Shoes, Socks, Seams, and "Strings"

Food Dyes, Preservatives, and High Fructose Corn Syrup

2011-04-04T11:54:00.000-06:00

One of these, or all of them, are causing my child distress, and it makes me both angry and sad. I have talked about this before, but Sofia is starting to figure out the connection herself. She was over at a friend's house the other day, ate a lot of conventional sweets, which I'm sure had all three of the aforementioned items in them, and had a HORRIBLE evening. Crying, extremely anxious, horrible stomachache, her legs hurt...but she knew why. She said through her tears, "I don't think I should eat food anywhere but at home."

I'm going to have to start being more proactive about packing food for her when she goes places. I've always done that for Mikaela with her food allergies, but it looks like it is a necessity for Sofia as well. I'm glad that she sees the connection between bad food and feeling badly, though. It will help her have the confidence and courage to say, "No thanks!"

The Anxiety is Driving Me Mad

2011-03-22T20:23:00.000-06:00

I came back here a few days ago to see where we were exactly a year ago, and the memories of awfulness came flooding back. What is it with the change of seasons?? Sofia is just a big anxious mess and has been for a few weeks now. She has tummy aches all the time, cries over little things or for no reason at all, is constantly worried about things she doesn't usually get worried about, and doesn't want me to leave her sight. I'm so grateful that it's *just* anxiety and not clothing issues as well, though. Last year was nightmarish. This is definitely hard, but we're muddling through.

And, I'm Back!

2011-01-10T20:45:00.000-07:00

I had closed down due to not being able to post much but I've had a few requests for access so here I am again.

We are doing really well from a sensory standpoint. There are certainly moments, and sometimes days that aren't that great, particularly for Sofia, but overall things are much, much better than they have been.

Our biggest issues continue to be socks and shoes! Imagine that.

Hopefully my archives will be helpful to people looking for info and support. Please let me know if you have any specific questions.

Thanks!

Shutting This Down

2010-11-09T08:46:00.000-07:00

Hey All! Thanks for reading and commenting over the last year and a half. I've decided I'm going to close this blog for now. I have just started working part time and feel I have very limited time to keep this up. You can still visit me at my healthy eating blog: The B.E.T.H. Approach, or at my "random thoughts on random stuff" blog at: Beth's Boring Blog.

It's been great being a part of the SPD blogger community, and I will continue reading all of your blogs. If you have a blog that is not currently on my sidebar please leave the address in a comment below and I will be sure to bookmark/follow all of them before I close this.

The support I've received on our SPD journey from you all has been amazing. Thanks so much!

~Beth

Miracle of Miracles

2010-11-04T09:08:00.000-06:00

My child (the older one) is wearing jeans!! I was at Gap a couple of weeks ago and they had jeans on sale for $6.99 and they had slims. I thought, "I'm probably going to end up returning these, but for that price it's worth a shot." So I brought them home, casually mentioned, "Hey, there are some jeans in that bag if you want to try them on." So she did, and she LIKES them. She hasn't been able to wear jeans since she was really little, and even then she didn't like them and much preferred to wear leggings or sweats.

So I went back to Gap and bought one more pair for now and the next size up for next year. I can hardly believe the changes that have happened in a few short months. I have ideas about what has precipitated the change. I think it's partly getting older and wanting to fit in, which I have mixed feelings about. We all want our children to just be able to be themselves, but I certainly feel and cave into societal pressure on a fairly regular basis, so who am I to say that my child shouldn't?

I also think that the dietary changes we have made over the last year and a half are having a very positive impact on both my children, with their overall health and SPD. This time last year was HELL with Sofia, and this year we've just seen a touch of SPD symptoms and anxiety. Granted, the weather has been staying really warm so we haven't had to fully make the switch to closed shoes and warmer clothes, but she's been dressing appropriately for coolish weather with little complaints. And when there are complaints, I can almost always tie it to what she ate that day or the day before. Too much sugar and/or artificial colorings lead to breakdowns.

We have cleaned up our diet so much that when the kids have something really processed it manifests almost immediately in their behavior and their ability to tolerate their clothes. Twice in the last few months Sofia has had a really hard night where she got really rowdy and then grumpy, cried for no apparent reason, couldn't fall asleep, and then woke up during the night with bad leg pains. This used to happen far more often, and the two times recently have been on days when she consumed a little junk food.

I wrote more on my other blog about how we limit sugar around here.

It's really exciting to go through the fall season without any major issues. Fall and spring are usually our toughest times.

My Story for 30 Stories in 30 Days

2010-10-19T07:43:00.000-06:00

My story is up at: Hartley's Life With 3 Boys.

Check it out, and make a donation if you can. All funds go to the SPD Foundation for advocacy, education, and research.

I have to share this picture because it's so Sofia:

She is climbing on us, pinching, wrestling, squeezing, etc. every single day. Poor Alex was trying to get schoolwork done. Of course I grabbed the camera before I told her to get off, but I'm a broken record all the time: "Get off your sister. Get off your dad. Don't pinch me so hard. It hurts."

This kid. I tell ya.

30 Stories in 30 Days

2010-10-02T18:50:00.001-06:00

Hartley’s Life With 3 Boys is holding a one of a kind event showcasing the stories of 30 Families parenting a child with SPD in 30 days. This event is designed to not only help spread awareness of Sensory Processing Disorder, but to raise money for the SPD Foundation’s 30th Anniversary.

She opened up yesterday with a great story by Dr. Lucy Jane Miller. Use the ChipIn! widget on her site to make a donation, and your name will be entered to win lots of great prizes. If you would like to donate under my family's name feel free to do so. Just leave Turner/thebethapproach@gmail.com in the comments section of your Paypal payment. Thanks!

And keep an eye out for my story later this month!

****************************

Today I was out of sorts and had a good long cry about all sorts of stuff, and started getting that "Why my kids?" feeling. I tend to judge myself when I start to feel sorry for me, but I allowed myself to just feel it for a bit and then let it go. Because sometimes, it does just suck and I do wonder why, and that's okay. I certainly don't want to get stuck in that feeling because it wouldn't be beneficial to me or my kids, but it's alright to grieve and acknowledge the loss that often comes along with having sensational kids.

Both girls have been doing so well, but I had a harsh reminder this morning that this is the time of year when they start spiraling downward, and I was frustrated. I'm going to have to really make an effort to make sure we have a good sensory diet in place in the coming weeks. Lots of trampoline jumping and some good heavy work for my Sofia!

Mikaela took this pic yesterday! It's been unseasonably warm.

Silly Sisters

2010-09-24T10:06:00.000-06:00

I'm writing this as part of the Blog Carnival at Hartley's Life With 3 Boys.

Of course, both of my girls have SPD, so it's not like I can write about my "normal" kid. But, they do have different issues that fall under the larger umbrella of SPD, and Mikaela also has asthma and a severe peanut allergy. Sofia really wants to go to Mikaela's special school, but she can't since she doesn't have a chronic health condition. On many an occasion Sofia has hung her head sadly and muttered, "I wish I had asthma." I love that she sees her older sister not as disadvantaged, but as super cool.

As part of our homeschooling efforts this year, a friend and I have pooled our resources and hired a Spanish tutor once a week. Sofia just went to her first "Spanish Class" on Wednesday. She was so excited, and when we left she said, "Wouldn't it be cool if I had to wear a uniform to my school, I mean, class? Wouldn't it be cool if I had to wear a backpack to my class? Wouldn't it be cool if I kept my homework and my water bottle in my backpack?" etc. So we ended up making a trip to Target for a school uniform and school shoes just like Mikaela's. I was really reluctant to buy the shoes, as I have paid for so many pairs of shoes that have gone unworn, but she begged and pleaded and I finally caved. She just wants to be like her sister, after all! (And what's another $10 towards clothes/shoes they don't wear when I consider the probably hundreds that we've spent over the years??)

Mikaela is very supportive of her sister when it comes to SPD. She often helps her pick clothes out, distracts her when she's not doing well, and offers to be "matchy twins" so that wearing clothes is more fun. In some ways I guess I'm glad that they both have it, as it makes it easier for them to be supportive of each other. I'm so blessed that my girls are so close, even though they are 6 years apart in age.

This and That

2010-09-09T09:59:00.000-06:00

Sorry for the lack of posting. Life has been a little crazy this last month. Mikaela started school and it's going great. I still haven't found any pants for her, but not for lack of trying. I'm not sure where else to look, and I'm worried that we won't be able to find any before the weather turns. She was fairly happy with the uniform pants at Kohl's, but the 10 Slim was too short and the 12 Slim was too big around the waist even when cinched up. She is so tall and slender!

1st Day of School

Homeschooling Sofia is going well also. I'm pretty laid back in my approach with her, which seems to work for both of us. She pushes back against anything that she feels I'm forcing on her, so I have to approach everything in a playful manner. She's been making me laugh, though, because I'll suggest something, she'll resist, I'll quickly give in, and then she insists on doing it.

A few weeks ago we went to an amusement park, something that we haven't really tried in the past because of sensory issues. Well, I took Mikaela once about 3 years ago and it was really boring because she was too big for most of the kiddie rides and too scared of the adult ones. The difference between my girls was making me laugh. Sofia loves sensory stimulation and Mikaela doesn't. Mikaela was brave though, and tried a lot of rides. She loved the Whip, the Ferris Wheel freaked her out, and she opted out of the Tilt-a-Whirl. I was proud of her. Sofia loved all of it.

Wheeee! So happy.

Personality and SPD status - in a snapshot!

Great Giveaway!

2010-08-03T09:09:00.000-06:00

Sponsored by Soft Clothing, Hartley Steiner, and the SPD Foundation.

Check it out!

Time Flies!

2010-07-29T22:31:00.000-06:00

I can't believe the summer is almost over. A couple of weeks ago when we were out buying camp supplies we also looked at school uniforms and lo and behold - Mikaela can wear regular skorts and shorts! They have a slide clasp instead of a button, and an adjustable waist. She's never before been able to handle anything but soft cotton leggings or shorts, so this is HUGE! I made her try everything on and kept saying, "Are you sure they feel okay?" She assured me they do. Unfortunately we can't get pants because if we cinched up the waist on a pair that was long enough it would look ridiculous. As it is we got size 8 skorts and shorts, and have to cinch them just a bit. She's sooooo skinny!

And I probably shouldn't be blogging about this because she's getting older and probably won't appreciate it, but I know other SPD mamas out there can understand. She's wearing underwear. This is also huge and I'm so relieved. She hasn't been able to since she was about 4. For a long time she would wear bike shorts underneath skirts, but then she went through a period where those were horribly uncomfortable to the point of tears and she took to only wearing long shorts, capris, or pants.

So needless to say it was a very exciting (and expensive) trip to Target! We got a bunch of underwear, socks, the skorts and shorts, polo shirts, plus a bunch of other camp and school necessities. But yay! What a relief to have school shopping feel fun and so...normal!

Now I just have to find some pants that she can tolerate. She still has her hiking shoes that we bought in the spring, and she just got a cute pair of black Crocs that are like a ballet flat. I think a pair of tennis shoes should make us all set for the school year! Woohoo!

Growing Up...

2010-07-20T11:07:00.000-06:00

...is exciting and fun and sad all at once! Mikaela is currently at camp. It got canceled last year but this year it's on. She was nervous and excited when she left on Sunday. I put on a brave face while we said goodbye then bawled my eyes out in the car. It's mainly her peanut allergy. It's really hard for me to trust others to keep her safe. I know all too well that accidents happen.

A friend of mine whose daughter also has severe allergies said she's decided the only thing that's going to keep our kids safe is an Epipen and someone with the knowledge to know when and how to use it, and I have to agree. We can do all we can to keep them from ingesting their allergens, but cross contamination is going to happen at some point regardless of how hard we try.

At any rate, I'm sure Mikaela is having a fabulous time and I can't wait to hear all about it when we pick her up on Saturday. Sofia is finding lots of fun things to do with her sister gone. She keeps raiding the game closet. Yesterday she played several board games, Marbleworks, and now she's got the blocks out. I also bought her a puzzle on Sunday and she worked on it for so long. She's always had a hard time with puzzles, but she's so determined. At one point she said, "My neck hurts," and I encouraged her to take a break and she refused. "No! I want to finish."

She was so proud! I helped her finish it after she'd been working on it for almost two hours. It's really neat to see her have such a long attention span to complete a task. Lately she's also been really intent on learning to read. Mikaela was pretty much trying to learn to read from birth, and taught herself at age four. It's been a little hard to just follow Sofia's lead and go at her own pace, but it's great to see her suddenly really into it.

We've been reading Ramona together, even after her initial stubbornness, and I just found out there is a movie coming out on Friday: Ramona and Beezus. Maybe we'll go see it on Saturday after Mikaela comes home!

Dad - Always the Fun One

2010-06-25T15:07:00.001-06:00

Alex is an amazing dad, and he helps the girls overcome their fears by simply having fun with them. They often ask me why I'm so boring or tell me, "It's okay, Mommy. You can stay home. Daddy will take us/play with us/be the cool parent." I'm totally fine with it, and so grateful for him.

This, on the Other Hand, is Definitely Defiance

2010-06-16T16:50:00.000-06:00

Mikaela has been begging to go to the library for a week, and today was the day it finally worked out. However, Sofia started begging to not go to the library and just stay home. "I don't like the library! I don't wanna go!" Since I know her well and know that she does, in fact, enjoy the library, especially picking out movies, I ignored her objections and off we went.

She turned in her Summer Reading Program card and got her first prize - an inflatable beach ball - and she was happy about it. Then I said, "Oh yeah! I was going to get a Ramona book to read to you. Let's go look." Sofia immediately started whining, "No! I don't like Ramona." (She's never even heard of Ramona.) I found a Ramona book and she grabbed it from me and put it back on the shelf. I kept my patience, picked it back up again, and showed her how Ramona has her same haircut except she has bangs, and flipped through the book and showed her some pictures. She continued whining and insisted that she didn't want to read it with me and that it would be very boring. I calmly stated, "Sofia, if we can't read a book together we aren't going to have a very good time doing homeschool in the fall."

And then...wait for it...she started crying in the middle of the library, wailing, "I don't wanna do homeschool! I don't wanna do regular school! I don't wanna do ANY school! AND I HATE RAMONA!"

Ah. Lovely. I got down on her level and just wrapped her in my arms until she'd quit crying. She settled down, but then looked down at the reading card that was still in her hand and said, "What's this?"

"It's your Summer Reading Program Card."

"What's it for?"

"To read books and get prizes."

"I don't wanna do it."

Oh brother. Stickin' it to the man at age 5. I'm not going to do ANYTHING that anybody wants me to. Definitely defiance. She then refused to pick out any movies or books, restated that she hates the library and especially Ramona, then asked to buy something out of the vending machine. No freaking way, child! I just continued to ignore her while her sister and I picked out what we wanted, and I did get the Ramona book. And you know what I'm going to do? Read it quietly to myself but laugh really loudly...I can guarantee Sofia is going to be dying to know what I'm laughing at. She may be defiant at times, but her curiosity is strong too.

When these kinds of things happen it's actually kind of refreshing when there isn't a sensory piece. It's just Sofia deciding to be obstinate and contrary and pushing the limits. Just her being 5. It's perfectly normal, and kind of funny, I'll admit. Though I have to keep the laughter in check in the moment. Don't want her to think I like her behavior.

She's currently begging to go swimming right this instant. I told her I didn't want to and she said, "It's okay. When Daddy gets home he'll take me swimming, and you and Kaela can stay home." Whatever you say, child.

It's NOT Just Defiance

2010-06-02T11:53:00.000-06:00

Thanks to Sensory Street, Inc for posting this article on Facebook. The author, John Rosemond, asserts from ONE example that Sensory Processing Disorder isn't real but merely defiant behavior. He states:

In the absence of obvious, significant, quantifiable brain deficiency, as would be the case with, say, cerebral palsy, there is no known way of determining that certain otherwise normal children's brains don't organize sensory data appropriately. Therefore, the above statements from SPDF are completely speculative. Therefore, the existence of SPD is completely speculative.

He then goes on to tell about one little girl who had been diagnosed with SPD but when he advised her parents to take all of her belongings away so that she would get dressed in the morning she did so. First of all, of course she did. What kid isn't going to respond to, "You can't come out of your room or have any of your things until you get dressed?" Threats and fear can be powerful motivators, but I certainly don't want to parent that way, regardless of if SPD was a part of our reality or not.

Mr. Rosemond, just as you assert that the lack of studies or quantifiable evidence makes the existence of SPD speculative, I would like to remind you that one example does not a study make. I'm no scientist, but I know that much.

I've had plenty of people in my personal life speculate that perhaps my children are simply defiant, and you know what? It pisses me off. But the same people who have made that speculation but have gone on to get to know us better and observe have completely back tracked and admitted that it doesn't seem to be the case at all. One friend even told me in regards to Sofia, "There's no way she could be making that up. She's so happy and laid back and then putting on her shoes makes her burst into tears. It's just not like her. It doesn't follow suit with her personality and temperament." In other words, all that friend had to do to know that it is real is to observe. (Part of the scientific method, if I recall. Again, I'm no scientist.)

I hope the parents that he "helped" get some better advice. I have so much guilt about how I did resort to threats to get Mikaela to wear her clothes when she was little. And she's not a defiant child at all, but sweet, sensitive and desperate to please, so she would be totally miserable with tears rolling silently down her cheeks, not able to enjoy the world around her because she was constantly bombarded by sensory input she simply couldn't handle. It took having Sofia, who is more strong willed and verbal, for me to realize that perhaps there was more to all of this than "sensitivity."

Having it finally click in my own head that this is a real thing and not just over sensitivity in the case of one child and defiance in the case of the other has made all the difference for our family. Mikaela unfortunately received a late diagnosis and is resistant to occupational therapy, but at least I am learning more and can be more sensitive to what she needs and how to help her. Another clue that it isn't just defiance is that it hasn't gone away. With age she's become more able to cope with things, and utilize different strategies to do so, but she's just as sensitive to clothes, noises, and lights as she's always been.

This is an area where I am overly sensitive and defiant, I think because all of the special needs that we have been blessed with are considered hidden disabilities and are barely understood and/or acknowledged by the medical community. There was recently a New York Times article entitled "Doubt cast on many reports of food allergies" that made me want to cry. I have personally overheard many parents of nonallergic children speculating that we parents of allergic children are making up or exaggerating the severity of our childrens' allergies. You go through the terror of watching your child go into anaphylactic shock and plunging an Epipen into her thigh while your husband calls 911, all the while chanting, "Please don't die" over and over in your head, and then tell me I'm making it up.

Just because something is misunderstood or hasn't been studied doesn't mean we should make broad speculations that it must not be real. I would never deign to make assumptions about the reality of others' lives, particularly in such a condescending and arrogant manner. It's easy to label things as crazy or insane when you have no direct experience with them and don't have to deal with them, particularly on a daily basis.

My friend Jenn is a reader here, and she admitted to me recently that when I first started the blog she was highly suspicious that I was simply a pushover parent and my kids were defiant. But after recently spending some time with us she said the combination of following the blog and observing the way my children are and the way I parent them that she was wrong. I told her that I will likely never fully understand SPD, but I have to admit that it is real and do my best to help my kids simply because this is the hand I've been dealt. This is my life.

Sensory Preparation

2010-05-28T12:01:00.000-06:00

We are officially in summer, as Mikaela finished up the school year yesterday! I can't believe she'll be in 7th grade next year. Time flies. We have lots of fun plans for the summer, and I'm trying to prepare as best I can while looking through a sensory lens.

Sofia's latest anxiety/fear is about bees and bugs, which is totally crazy because she's never had a problem with them in the past. I'd love some suggestions as to how I can help her. I know some of it has been learned from me and her sister. I used to be really scared of bees, but an incidental total immersion last summer when we went to a farm to pick raspberries seems to have completely cured me! The raspberry bushes were literally covered in bees, and I just took a deep breath and went about my business. Sofia was there, too, but she says she doesn't remember. I still am not fond of wasps and yellow jackets, but I just use my deep breathing technique and deal.

I'm excited about summer for the first time in years (I've lost 60lbs in the last year - you can read about it on my other blog, but the giveaway is over. Sorry!) so I've told the girls that we are going to have a blast and be outdoors all summer long, and not let fear of bugs get in our way. We're going to go hiking, camping, swimming, and take several day trips to some of the Colorado mountain towns that we love.

I'm trying to get the car completely prepared. I have a couple of small collapsible containers that I found at Target, and I'm going to fill one with wipes, Kleenex, hand sanitizer, sunscreen, bug spray, ziploc bags, napkins, plates, and plasticware. I want to be prepared for any and every situation. The other container is for things to keep Sofia occupied and happy in the car. I'll put some coloring supplies, small toys, and a couple of heat packs for some weight to put on her lap. And of course we'll keep sun hats, ponchos, and an umbrella in the car too.

I'd love to hear how others prepare for road trips and summer activities!

Ahhhh...

2010-05-12T20:12:00.000-06:00

Sofia finally seems to be back to "normal." Our normal, anyway. Which is still not very normal according to most standards, but for us it feels good. She's back to changing clothes several times a day, and trying every pair of shoes she owns before we go somewhere, but as long as I give her plenty of warning before it's time to go we're fine. I can live with that.

Now to just spend the summer figuring out what her triggers are and how to avoid such a long flare in the fall. Hopefully this new support group will help with that. The first meeting was good. There were just three moms and Susan, the coordinator, but it was nice to connect with people going through similar things.

Book Review: Parenting a Child With Sensory Processing Disorder

2010-04-30T15:07:00.000-06:00

It took me a little longer to finish this up than I thought, but luckily no one had it on hold at the library so I was able to renew it!

Parenting a Child with Sensory Processing Disorder: A Family Guide to Understanding & Supporting Your Sensory-Sensitive Child by Christopher R. Auer, MA, with Susan L. Blumberg, PH.D.

I really appreciated this book and its focus on the whole family. I also appreciated that only one chapter was devoted to giving an overview of what SPD is. I know with some books in the past I was impatient to get to the "skills and strategies" section. The first chapter is very succinct and informative, and I always enjoy a quick relearning experience, as I sometimes feel that I will never totally understand SPD.

Chapters 2 - 8 focus on some aspect of families dealing with SPD, including a chapter on Strengthening Relationships, one for dads, Taking Care of Siblings, and Learning to Talk About SPD. I'll just hit what were some of the highlights and "Aha" moments for me:

Chapter 2 - SPD is a Family Affair

Talks about developing a positive focus, which is something I always need to be reminded of, and something I try to encourage my husband towards.

"Living with SPD isn't easy. It can be easier, however, if it's viewed as an opportunity to create a stronger family and a deeper, richer life."

This chapter also talks about taking care of yourself, which became very important to me during this latest flare that Sofia went through, even if it was going to the coffee shop for an hour or taking a bath. Taking care of me helped me keep my sanity.

Chapter 3 - Strengthening Relationships

This was also timely for me since I really started to feel during this last flare that it was all "on me." I'm now communicating better with Alex so he knows what's going on and we are working towards solutions together.

Chapter 4 - Dads are Needed, Too!

Hopefully going to get Alex to read this chapter before I return the book!

Chapter 5 - Taking Care of Siblings

This is an interesting dynamic for us since both girls have SPD, but Mikaela also has asthma and food allergies. I think both girls go through times of feeling like the "normal" or "not normal" one. One thing that we have been doing for the last couple of years is once a month date nights, where we each take one of them on a date and switch off the next month. It gives both Alex and I one on one time with each girl.

Chapter 6 - Learning to Talk About SPD

The importance of support and community! And why I started this blog - to tell our story and connect with others. I appreciated the bit on having an "Elevator Speech" that highlights the positive about your child but explains what others might see as negative behavior. I know I sometimes struggle with how much to say/explain to people.

Chapter 7 - Bringing Hope

Talks about making a paradigm shift; moving from the at-risk model to the resilience model.

Chapter 8 - Making it Happen - Building a Healthy Family

My favorite part of this chapter was the recommended stress relievers, but if you want them you'll have to read the book!

I recommend it.

Coming Soon!

2010-04-21T14:10:00.000-06:00

The SPD support group that was supposed to happen last month got postponed because of snow, but it's on again tonight and I am going. I am really excited about it. And, I finally put two and two together and realized that the woman coordinating the group is the author of the book I am currently reading! Susan Blumberg. She coauthored Parenting a Child With Sensory Processing Disorder! It was so funny because I was reading an email she had sent out about the group, and then thought, "Wait. That name is so familiar..." Isn't that great! She has graciously offered to do an interview with me for the blog. First up will be a review of the book, though, and I am on the last chapter.

I'll let everyone know how the group goes, and if there is anyone in the Denver area interested in attending just let me know and I'll forward the details.

Lots of exciting stuff on the horizon! Sofia is continuing to improve (yay!). Shoes are still not her friend, but she's been getting dressed on her own in the morning and wearing a lot of different things.

An SPD Funny

2010-04-19T17:25:00.000-06:00

I was getting ready today and listening to Sofia play on PBS Kids. She was playing a Curious George game, and had the volume turned up LOUD, as usual. (Have I mentioned that one child is over sensitive to noise and the other is under sensitive? Makes for exciting times around here.) Anyway, the Man in the Yellow Hat was giving her directions in the game. She had to pick out a birthday gift at a store and I heard him say, "Be careful not to bump into any of the other customers."

I found myself thinking, "YES! Teach her that. Please."

And then giggling at myself as I realized it was such an SPD moment. Sofia is CONSTANTLY bumping into people wherever we go. It's a combination of often needing to watch her feet as she walks and just not having a good sense of where her body is in space. She misjudges how close she is to people and whether or not her body will fit through a space.

I remember one trip to the mall in particular around a year ago. She was bumping into people left and right and I was getting annoyed looks as I muttered, "Sorry! Excuse us!" I reminded Sofia to please look where she was going and to say excuse me when she bumped into someone. So then she walked really slowly and yelled, "Excuse me!" to everyone who walked by, even if they were 10 feet away, which was funny even at the time. (There are also so many SPD moments that are only funny in retrospect, right?)

I probably have little hope that a computer game will translate into real life skills, but at least I know her fine motor skills to manipulate the mouse and get through a virtual store without bumping into anyone are great!

Oh, and listening to the Man in the Yellow Hat say, "You ROCK" is always good for a giggle. He seems like so much more of a "Nice job," "Good going," or "Swell" guy to me.

A Little Better

2010-04-09T09:15:00.000-06:00

Sofia is slowly improving still. She's wearing dresses and has even worn leggings underneath the last few days. She goes back and forth between shoes and slippers from day to day or hour to hour. I'm noticing a pattern in these flares. They happen on the cusp of both spring and fall, and last about six weeks. Why? I have no idea.

We went to see a child psychologist yesterday, and she was very nice and gave me a lot of good ideas to deal with Sofia's sometimes overwhelming anxiety. She said that a presentation at such a young age points to a genetic tendency towards anxiety problems, and that is definitely what I was suspecting given my own family's history. We will be using Cognitive Behavioral Therapy to address Sofia's issues.

I'm going to do some reading and research on child anxiety. It was hard to hear that I may be feeding into Sofia's anxiety. She asked how I help Sofia deal with her fears, and I gave the example of how I explained each step of the process of having her blood drawn last week and Sofia did great. Sofia asked a lot of questions beforehand, which I answered, and she was still very fearful of it, but as I gave more information she actually started to become quite curious about the process. Coincidentally my doctor had ordered some blood work for me, so I was able to go first and then Sofia went and had a smile on her face the whole time. I thought I'd done a good job of easing her anxiety by letting her know exactly how the process worked, but the psychologist said that I have to present the idea that there is nothing to worry about. I'm just not sure I agree that withholding information would give Sofia the idea there is nothing to worry about.

In the past Sofia has FLIPPED OUT at doctor appointments, and I once tried the "I'm just not going to tell her the visit is even for her until the nurse calls her name" strategy, and that was by far our most disastrous visit. She got so freaked out she couldn't calm down, and of course the nurses and doctor were angry at me for not being able to control her. I was on the verge of tears. It was awful.

I guess I agree with the psychologist when it comes to Sofia being unreasonably anxious about things that she normally loves, like a play date. She did that the other night. I told her some friends were coming over in the morning to stay with her so I could go help a friend, and she got all upset and had lots of questions and worries. And I just told her there was nothing to worry about and she was going to have fun. But when it comes to doctor appointments I don't feel that Sofia is being unreasonable in wanting to know exactly what's going to happen. She's been very traumatized in the past by medical professionals examining her and invading her personal space without either asking first or telling her what they were going to do beforehand.

I was also slightly offended at first because the psychologist thought that Sofia was too attached to me and that was part of the problem, but by the end of the visit she acknowledged that it sounds like Sofia spends plenty of time away from me and does fine. She spends the night at the grandparents once or twice a month, time at friends' homes without me during the week, and I've gone on a few trips where she has stayed with her dad and sister or grandparents. Alex and I even took our first alone vacation ever last fall for five nights and she was totally fine. She definitely needs to stay with people she knows well, but she is away from me quite a bit.

On the topic of school, the psychologist said that ideally the way to deal with that fear would be to just put Sofia in school, and again, I have to disagree. She did say that if I really believed in homeschooling as the best option that's fine, but that if I was not putting Sofia in school because of her anxiety it would be best to get her in. The thing is, it's not just the anxiety that is part of my decision, it's her SPD. I suppose if I could get her in half day kindergarten in the afternoon I might be willing to do it, because I foresee that getting ready in the morning will be a nightmare.

So, I don't know. I did appreciate the strategies that she gave me, which I think will be helpful for SPD as well as anxiety. They are basically distraction and relaxation techniques. Sofia is often very adverse to me telling her to take a deep breath or count to ten with me, but if I can utilize the distraction techniques before we need the relaxation techniques we should be good. Actually, we left the appointment and went to Costco. Sofia cried on the way because she didn't want to sit in the cart and felt too tired to walk, and I just ignored her complaints. Completely on her own she decided to try sitting in the front of the cart, and at first she started to get upset but then looked at me and said, "We have to talk about something so I won't think about how yucky this feels." So we played "The Name Game," which I had just learned about in the psychologist's office. We each said a name of someone we knew until someone got stumped. By the time we got through she felt fine and we were able to complete our shopping happily talking and laughing. It was great.

Hangin' in There

2010-03-27T23:50:00.000-06:00

I am hoping that Sofia is slowly but surely coming out the other side of this flare. She wore Crocs tonight. Briefly, but she did. She's still in a nightgown, but yesterday it only took maybe two hours to get used to her underwear instead of all day. Gotta celebrate the little victories.

Mikaela is on Spring Break and we have a friend coming in from out-of-town, so I likely won't be blogging much for the next week. Hopefully the distraction of having a friend here will help Sofia.

I've been doing a lot of researching and visiting SPD forums. I just need to compile info and then start trying different strategies. I'm seeing that some parents are supplementing with serotonin, but I want to be sure to do it correctly and safely if we decide to go that route. I'm also reading about reactive hypoglycemia. Has anyone else done any research on that? It does sound like a possibility in what's going on with Sofia, and interestingly if there is a genetic link, I have been diagnosed with PCOS, which is basically pre-diabetes and linked to insulin resistance.

Sofia CRAVES sugar and carbs like crazy. It's really hard to limit because she is constantly asking for something sweet. I don't eat sugar or white flour at all, and I've been slowly transitioning the girls to my same diet, but going completely off sugar is going to be difficult.

Have any of you other SPD moms had any luck with dietary changes?

Thank You

2010-03-23T08:55:00.000-06:00

Just wanted to pause and say thanks to everyone for reading, commenting, and supporting me and my family on this journey. I've picked up several new followers lately, several of whom have their own SPD blogs, and I'm so glad you all found me so I could find YOU!

I've added some new blogs and helpful links in the sidebars so be sure to check them out, and let me know if there are more I should add.

Support makes this all bearable. Thanks again.

We are planning on checking out the homeschool Options program this morning. Hopefully I can get Sofia ready and dressed (even if it's in pajamas and slippers)!

And the Downward Spiral Continues

2010-03-22T19:18:00.000-06:00

Alex and I had a nice date on Saturday night, but a miscommunication with the grandparents resulted in us just going to get our massages and out to dinner, then to pick up the girls. It ended up being a good thing, since when we arrived Sofia was in full meltdown mode, crying her eyes out and mumbling something about her nails. Turns out they did manicures, like they do EVERY time they go to Grandma's, and getting her nails clipped HURT. That has never happened before, and just shows how bad this "flare" is. Her nails weren't too short, but she said they hurt and felt really weird. Even the next morning she started crying in her sleep and said, "My nails! It's still my nails."

One thing that I was really touched by was that Grandma was on the SPD Foundation website, trying to figure out if there was some way to help Sofia. That meant a lot to me. I held Sofia for a while and eventually she calmed down, but she would mention, and I could just tell, that they were still really bothering her.

Today we were going to get groceries, and I just let her wear whatever was comfortable, which was a nightgown. I told her to get her slippers, as she still hasn't been able to wear shoes at all, and she thought they were in the car. They were not. I searched the whole house and couldn't find them. Our friends who came over to play this morning and whom we were supposed to be meeting at the grocery store had already left, and so I grabbed Sofia's old slippers, her red sparkly shoes, and just left. Her black boots, fuzzy Crocs, and new Crocs were all in the car as well. She cried that none of them worked and she just wanted to stay home. I explained to her that I can't continue to live my life this way, and that we have things we need to do and we can't just stay home because her clothes and shoes feel badly.

I gave her the option of picking one of the myriad available options to put on her feet so that she could "push the little cart," or going barefoot and sitting in a big cart. She chose the latter. But carts are not comfortable. She refused to sit in the front because "the metal part touches me and feels bad," and sitting in the back wasn't fun either, so she stood in the cart with her bare feet...and cried the entire time we were there. Luckily there weren't too many other shoppers, so I just quietly tried to console her and told her that we would leave as soon as we got what we needed. At one point she said, "Why does this happen to me, Mommy? Why?!"

I wish I knew, baby girl. I wish I knew.

A dear friend let me know about an SPD support group for parents that is starting this Wednesday night, so I am definitely going, and dragging Alex with me if we can find childcare. I am so done.

Still Tired, and Annoyed Too

2010-03-18T09:06:00.000-06:00

I mentioned previously that I talked to the principal at Mikaela's school and received permission for her to wear her shirt untucked. Well, it turns out one of the school nurses has been having her tuck it in, even though she is completely aware that she has permission not to. I just sent an email kindly asking her to cease and desist, and explained that Mikaela is a people pleaser, and just because she CAN tuck it in, doesn't mean it feels good and that she isn't thinking about it the whole time. I told her that if she was having her tuck it in last week, it most likely negatively affected Mikaela's performance on CSAP testing.

I offered to send her some information and resources about SPD if she would like to understand it better. The only reason I found out it was even going on was that Mikaela has been tucking in at school and then untucking right as she leaves the building so I wouldn't see. Yesterday she forgot to untuck, and I asked what was up, and she said, "It feels really icky but Ms. ___ wants me to do it." I understand that it must be frustrating to see one child "bucking the rules," but at the same time I really feel that she just doesn't get it or she would just leave Mikaela alone.

Sofia is still in a bad way. She had a bath last night and then cried for over an hour while getting used to her underwear. It is so taxing. I'm starting to feel that I'm the one with SPD as I just can't handle the crying. I put a movie in to help distract her, then went downstairs and sat in the Mod Pod, put some music on and completely zoned out.

Alex and I have both been stressed by this, of course me more so since I'm the one home with her all day, but we had a long discussion about everything over the weekend and decided that we are going to try and get more help. I made an appointment with a child psychologist for Sofia. There seems to be more going on than just SPD. Her anxiety levels are so high. Over the years I've had inklings with both girls that there may be some OCD or at least Generalized Anxiety Disorder going on. It's time to find out. I want to help them be as functional as possible both now and as adults.

The girls are spending the night at the grandparents on Saturday, and I remembered I have a couple of spa gift cards so Alex and I are both getting a massage and then using a Groupon to a nearby restaurant that cost $15 but we get $35 worth of food and drinks. Yay for inexpensive, stress relieving dates! I'm REALLY looking forward to it. Our last date was on Valentine's Day. (His mom made us pose for pictures - felt like we were going to the prom!)

We are really needing this time to connect. Special needs can be very taxing on a marriage. I'm trying to really communicate everything that I learn about SPD, all of my concerns, how I'm feeling on a day to day basis, so that Alex can really be involved and understand. I need his support and input.

I'm Tired

2010-03-13T11:14:00.000-07:00

We bought these lovely Crocs yesterday. Sofia and I finally got out of the house. She wore a dress and socks, but no shoes. I had to carry her into Lil Monkey Bizness to see our friends. I was willing to do whatever it took to get there because I knew all the running, jumping, climbing and swinging would be great sensory input.

After acting like a monkey we went to our friends' house and she played there, and Sofia borrowed these Crocs and wore them for the rest of the afternoon and loved them. So we went to the mall later in the afternoon and bought a pair. She needs some summery shoes anyway, so I wasn't too upset at the $40 it set me back. She had to get matching Jibbitz too.

This has been a really rough couple of weeks. All of our friends have been making school decisions for their kids for next year, and normally I am a very "live and let live" kind of person, but the last few days I have been feeling very resentful. It's a weird sensation for me, but I think it just comes from two weeks of a really high stress level. I'm actually really excited about homeschooling, but it's hard to hear people say that I should just put her in school and she'll "get over it."

On the one hand, it's tempting to put her in school and let them deal with it, but on the other hand I don't want to traumatize her, and I'm just really not in a place where having to do a ton of advocating for my child sounds like fun. I'm still burnt out from what we went through at Mikaela's old school. That was by far the most hurtful and stressful thing I've ever been through. The emotional and physical effects were staggering. I couldn't believe I had that many tears, and I had horrible insomnia, heartburn the likes of which I've never known, couldn't eat. It was horrible. Not to mention poor Mikaela. She had to live with the harsh reality that there are people in the world who simply don't care, leave all her friends and start the hard work of fitting in somewhere else where she was the new kid when the year had already begun.

And SPD certainly isn't life threatening like Mikaela's peanut allergy, but it's hard to feel like fighting. How understanding or not understanding will teachers and administrators be? SPD in and of itself is not grounds for an IEP or 504 Plan, so why would they be willing to let Sofia take a break when she needs to, peel her socks and shoes off during class, move around, chew on things if necessary? I just don't see it going well.

We are looking into an Options program that would have her in a classroom setting one full day a week. Two of her friends are already enrolled, so I really think she'll do okay. She'll get some experience in a classroom and I will get a break once a week. I can handle that.

Pulling Out My Hair

2010-03-10T12:05:00.003-07:00

First, the good news - Mikaela loves the shoes! She's been wearing them to school everyday and thinks they're great. Sofia didn't like them at all, but they were way too big. I was really annoyed since I had measured her foot and got the size that REI's size chart said she needed, and they were ginormous. I'm contemplating getting a smaller size and trying again. She is in a bad spot right now, so nothing feels good, but I know when she is feeling better she really enjoys being "matchy twins" with Mikaela. So maybe I'll just get them and put them up in the closet until she is feeling better.

I just called about making an OT appointment and Sofia has been put on a wait list. I'm frustrated with myself for not getting her in sooner. Her evaluation was last May, but I was reluctant to start therapy when our insurance only approved four visits. We just can't afford to pay out of pocket. But I'm going to go ahead and just do the visits as soon as we can, and take copious notes so that I'll have lots of strategies for at home.

I've got her back on Vitamin D (Note to self - don't make big sister responsible for taking her own vitamins and giving her sister hers. She was remembering the multivitamin and Vitamin C, but forgetting D for at least a couple of weeks.) I'm also having her do lots of trampoline jumping, Mod Pod diving, and I'm trying to do some joint compressions when she'll let me. This week is a bit better than last, but we really haven't been able to do anything other than go pick up Mikaela from school. It will take two hours just to get Sofia to put pajamas on, and then she cries the entire way there and back. It's very, very frustrating and exhausting.

Yesterday we had friends over and that was a great distraction. Sofia actually wore some dress-up clothes. I was surprised and glad, as that should help desensitize her skin a bit. As soon as her friends left she put her nightgown back on, but it's a step in the right direction.

Today I can't even entice her to get dressed with offers to go out to lunch or a trip to the mall; things she normally loves. I'll keep trying. For now she's happy to stay right here:

One Step Forward...

2010-03-04T09:40:00.004-07:00

Yesterday I really felt like things were looking up, so of course Sofia took that as her cue to get herself into total sensory overload (AKA freak out mode) for the rest of the day. A week ago we were out shopping and she found this cute little dress and leggings set that she just HAD to have. Tears and everything. I looked it over and thought the dress might be okay, but knew she wouldn't like the leggings because they are capri length and would feel weird to her. I told her several times, "These leggings are short," and showed her about where on her leg they would come to, and asked if she was okay with that. She insisted she was, so I (unwisely) relented and we brought it home.

Side note - yes, the wise thing would have been to have her try it on, but since it was a two piece they attach it so you can't, and I've found that both my girls get excited about things in fitting rooms and don't really notice that the clothes are bothering them until I've paid for them, got them home and taken the tags off. Of course.

Well, yesterday was pretty warm and she was excited to wear her new outfit. She put the dress on, then the leggings, and promptly started to cry. "It's the lines, Mom. The lines feel bad." I reminded her that whenever she doesn't like something she can take it off. I left her on her own while I finished getting ready, only to discover her in the guest bed five minutes before we needed to leave, snuggled under the covers with nothing on. I encouraged her to try some different leggings with the dress, but she informed me she already had tried her turquoise, pink, and black ones, and the rest of them didn't match.

We really needed to leave, so I told her she could just wear the dress by itself as long as she wore a coat. It was fairly warm, but it's still winter. So she put it on and we went downstairs to get shoes. First she tried her black boots and they were a no go. Oh wait, first was the red sparkly shoes and then the black boots. Next her fuzzy crocs, and she tried them with the strap both forward and back. No luck. The only other option were the tennis shoes she recently found in the car that are three sizes too small but she's been insisting on wearing the last few days. She tried them without socks, then decided she needed socks. Of course since she's been wearing those shoes, both pair of socks that she owns were dirty, but I told her to just put one on anyway. We really needed to leave, and I managed to stay (outwardly) calm this whole time.

I ran in the kitchen for something and came back and Sofia was face down on the Mod Pod looking totally defeated, but she did have socks and shoes on. She stood up, took a deep breath, and said, "I just had to get my tears out. If I don't get my tears out my throat hurts." We got in the car and I heard a few quiet sobs as I was driving. "Are you okay, Sofs?"

"I just have to get my tears out some more. My dress feels bad when I'm sitting down."

I calmly told her that maybe buying that outfit was a bad idea, to which she started crying in earnest. "I know you like the way it looks, but I don't want you to wear something that makes you feel bad."

At this point she was so far gone that she had kicked her shoes off, stripped off the socks, and wrestled with her seat belt (she hasn't been doing that for at least a month or so). We drove to pick up Mikaela and from the sheer exhaustion of simply getting dressed, Sofia was asleep by the time we got there.

I needed to go to the grocery store, so I parked the car outside King Soopers and woke Sofia up. I asked her to get her shoes on so we could go inside. She asked if she could stay in the car. Then ensued a 5 minute discussion on how that is illegal and the police would give me a ticket, not to mention also report me to Social Services. All told, we were in the car for about 10 minutes waiting for Sofia to get her shoes on. Mikaela let out this huge, long, exasperated sigh, and I totally shot her a, "Don't you dare. You've done this a million times." look.

We went in, and Sofia started to cry and asked if she could sit in the cart. I put her in and she asked if she could take off her shoes. I told her no because we weren't going to be there that long, then looked down a few minutes later and she'd taken them off. We actually had a pleasant time shopping after that since she wasn't thinking about her shoes. I let each kid pick out one "junk food" item. We rarely even shop at a conventional store. It's usually Vitamin Cottage, and they were totally thrilled. Sofia picked "cakes" - those chocolate cupcakes with the white squiggle on top, and Mikaela chose chocolate Pop-Tarts. Ick.

We got home and the rest of the evening wasn't too bad, until I had to leave for a babysitting job. I've been doing some babysitting for extra cash, and after such a rough day Sofia wasn't happy to see me go, and when I got home at 10pm she opened the door to the garage with her absolute saddest face and told me Daddy is mean. Sigh. I was up with her until about 11:30. What a day. Needless to say we both slept quite well, and for 9 hours!

The upside is that even though Sofia got upset she did a really good job articulating exactly what was bothering her, she got her tears out when she needed to, and was clear in letting me know what she needed to make things better. I have to look at the upside or I'd surely go nuts.

It's the Little Things

2010-03-03T11:06:00.003-07:00

Sofia has been brushing her hair. Of her own accord. By herself. And doing a good job.

That's a big deal around here.

We recently painted our living room, and moved our big bean bag chair (dubbed the "Mod Pod" as that is the brand name) down there. It's been a great source for both girls' sensory diets. Sofia jumps on the trampoline and then onto it, over and over again, and in the evenings she and I will snuggle up on it and listen to some quiet music. Mikaela enjoys resting on it too. Here's a picture of both girls snuggling with Grandma and Grandpa:

So cute! Sofia told Grandma on the phone one day that she had to snuggle on the Mod Pod with her, and now Grandma can't leave the house without snuggling for at least a few minutes. Sofia needs a lot of snuggling and/or roughhousing throughout the day.

I found a great deal on a pair of shoes and ordered them for both girls. I'm hoping they will like them. We plan to do some hiking and camping this summer, so I'm hoping these will work for that and just running around and playing.

Now we just need to get Sofia some socks that she can handle. I'm waiting until next month when Soft starts selling some. The poor child currently only owns two pair of socks, neither of which she is completely happy with.

Sensory processing disorder is real to thousands of kids - The Boston Globe

2010-03-01T16:25:00.002-07:00

Interesting article in The Boston Globe today about SPD possibly being added into the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders.

Sensory processing disorder is real to thousands of kids - The Boston Globe

Posted using ShareThis

On the one hand, I think it would be a good thing if it meant that insurance would be more willing to cover treatment, but a friend pointed out that if it's added the girls could have issues getting insurance coverage in the future. Even if that were to happen, I think I still want it to be easier to get help now.

Happy

2010-02-17T09:03:00.002-07:00

Here is Sofia in her party dress from Soft:

She absolutely loves it!

I really don't have a bad thing to say about everything we've tried. Everything is so comfortable, the flat seaming is amazing, there's no tag to cut out, the sizing has been great...my only complaint is that Mikaela is in the biggest size they currently stock, so I'm hoping that they are planning on extending that soon. I would also love, love, love to see them carry polo shirts. Mikaela is currently wearing a long sleeve Soft shirt under her Gymboree polos.

The pants are great. This is probably a horrible thing to say, but it's nice for me to see Mikaela looking a little more "normal" for school. Leggings under a dress worked well enough, but she is getting a little old for that look.

I highly recommend Soft Clothing for All Children. Check 'em out!

Mornings

2010-01-22T16:50:00.002-07:00

Just wanted to address the following comment from my last post:

Beth, I would love to hear how you got your girls out the door on time for school. My daughter starts kindergarten in the fall and I'm terrified she'll never make it on time.

Oh goodness, I so wish I had some wonderful suggestions for you, but honestly, our decision to homeschool Mikaela and now Sofia in the fall when she starts kindergarten has been largely due to their sensory issues. Mikaela has been in school for 2.5 years now, but we homeschooled for K-3rd grades.

In the last couple of years we have definitely had some very dramatic (and traumatic) mornings getting ready for school, but with age Mikaela has become better able to handle her morning routine on her own and get out the door on time. What lessened the pressure for us a lot was that I quit getting up in the morning with her as her dad is able to take her to school on his way to work. She gets ready completely on her own and greatly prefers it that way. She showers at night and lays out her clothes and socks for the next day, so in the morning all she has to do is get dressed, brush her hair and teeth, take her daily meds, and get her shoes, bag and coat. Breakfast is served at school, so we don't even have to worry about that.

She needs 45 minutes to do all of that, because she is very set in her ways (honestly probably a little OCD), and has to do everything a certain way and in a certain order. She spends a good 15-20 minutes of that time brushing her hair, and it generally looks the same when she finishes as when she started. She also takes a good 5 minutes to get her socks on and "just right." If I am observing I tend to get annoyed, but I had to just let go of my expectations and quit judging her for what I deem to be a tremendous waste of time. I've learned to just let go and adapt a "whatever it takes" attitude. If that's what she needs, that's what she needs.

With Sofia, we have the luxury of sleeping in quite often, and we only need to be somewhere a couple of mornings a week for playgroup and a cooperative preschool that we do with friends. I've learned to let go with her as well. She's old enough now to dress herself, so I'm very clear with her that it is her responsibility to just get dressed in whatever feels comfortable to her that day. She is getting way better at just taking something off and trying something else when it doesn't feel good instead of instantly launching into hysterics. I try to stay calm and say, "Sofia, just take it off if it feels bad and try something new." It's been a slow and steady process but she's getting there. Sometimes the things she picks are not occasion or weather appropriate, but again, I just try to roll with it, or meet her in the middle. "Okay, you can wear that if you will wear your vest/jacket/shawl when we are outside, or put some pants on underneath."

A year ago we tried preschool very temporarily and it was a disaster, and so stressful. At the time she refused to wear a coat at all, and the school wouldn't let her go outside during playtime without one. I know not everyone has the luxury of just not doing school, though, so I totally feel your pain and wish I had some better suggestions.

A Little Relief

2010-01-13T20:38:00.003-07:00

I talked with Mikaela's principal today and told him how stressed out I am about all her leggings for the school year being torn and now also too short. She has shot up in the last couple of months. They are all almost 2 inches too short now. I told him that I could probably find some navy or khaki pants that she could wear, but she can't handle having her shirts tucked in, which is a school rule. He was so kind, and told me to just find whatever she is able to tolerate, and we will figure it out. It was such a weight off my shoulders! We are going to try the new khaki pants from the just launched Soft Collection.

And on that note, I know I still owe some pictures and a complete review, but the basis of the review is going to be "WE LOVE SOFT!" I bought a dress for Sofia and a few more t-shirts, and we couldn't possibly be happier with them. I'm just holding out hope that we can get a pair of pants for Mikaela that will be slim enough in the waist yet long enough.

Happy Holidays!

2009-12-21T13:50:00.003-07:00

It has been a hectic few weeks around here. I will post a full review of the t-shirts from Soft as soon as possible, but wanted to at least take a moment to share a holiday and sensory related funny.

I posted this family picture on Facebook recently:

And cracked up when my uncle pointed out that the girls were lacking shoes. I hadn't even noticed. I think in sensory families we just get used to the kids being shoeless, underwearless, not dressed appropriately for the season, and so on and so forth. The fact that they had clothes on (matching, no less) felt like quite an accomplishment. We take what we can get around here when it comes to balancing fashion and comfort.

Wishing everyone soft, comfortable, and relaxing holidays!

Very Impressed

2009-12-07T19:37:00.002-07:00

I was just thinking today that I needed to write here, but there hasn't been that much going on. We seem to be on a pretty even keel as far as sensory issues go lately (meaning we have good days, and bad days, but mostly good days). Alex just got home and put a pile of freezing cold mail in my lap, including a package from Soft!

I signed up to receive free shirts for the girls, and they are here. I have to say that I was immediately impressed. I pulled the shirts out of a cute little cloth bag, and they are indeed SOFT! The girls have them on now, and I'll update tomorrow with a full review and some pictures. Mikaela loved it and asked to see the catalog that came with the shirts and when I asked Sofia how she liked hers she simply did a happy dance then ran to her drawer to put on her softest jammy shorts with it.

Thank you, Soft. Can't wait to try out more of the clothing line!!!

Sensory Induced Anger

2009-11-17T09:12:00.002-07:00

Or SIA. It's the name of a new condition I'm claiming for myself. The only pants Mikaela will wear are cotton leggings from Gymboree. I have let go of any expectation of how she should look and have succumbed to just paying $10-$15 per pair of what is, for her, essentially underwear. She has four pair in uniform colors for Monday through Thursday that she wears under a uniform dress, and maybe five or six other pairs to wear evenings, Fridays, and weekends.

Well, a few weeks ago I noticed that the stitching on the bottom hem of one of the pairs of uniform leggings was coming undone. It was one of the light blue ones, and last year we had to have two light blue pairs replaced after they inexplicably shrank about five inches even after I washed them according to the directions on the tag. "Hmm," I thought to myself, "Gymboree just doesn't make these light blue leggings very well." First it was just one pair, but then I noticed the same thing was happening with the other light blue pair. Very strange.

Within a week, the stitching had come almost completely out of the first pair I had noticed, and the second one was getting worse as well. But then while doing laundry I noticed the same thing on one of the navy blue pairs. Then the next week I noticed it on one of her non-uniform pairs. So annoying! Surely the quality of Gymboree clothing has just gone totally downhill.

At the end of that week I had a parent/teacher conference with Mikaela's teacher, Miss H, and she invited Mikaela into the room. We were sitting there discussing school, and out of the corner of my eye I watched as Mikaela violently yanked the bottom hem of her pants in order to pull them up and adjust her sock. She yanked, pulled up, yanked again, and pulled down. Suddenly I couldn't even hear what the teacher was saying, and I know my eyes widened and I wouldn't be surprised if there had been steam coming out of my ears. I was so mad!

Here I thought some weird phenomenon was occurring or that shoddy sewing was the problem, and she was yanking the stitching out. I certainly can't afford to buy more leggings, and they're not even available this time of year anyway. They are supposed to last the whole year. I don't sew, and I don't want to pay to have a tailor fix the hems. For now I'm just letting them be, but I'm afraid they will come completely unraveled.

I'm both anticipating and dreading the thought that she only has one more year of wearing these leggings, as they only go up to a size 12. She's going to have to figure out something else to wear after next year, and hopefully there won't be too much SIA involved for either of us!

These Boots are Made for Clacking

2009-10-23T13:55:00.003-06:00

I recently bought a pair of knee high black boots and Sofia was instantly enamored with them. "Oh, Mama! I love your boots. They make such a nice sound! Do they make them in my size?" Of course I told her no, but then lo and behold we were out shopping one day and she found boots in her size and they make lovely clickety-clack noises on hard floors. She was also delighted to discover that they make black marks on vinyl floors. Mama was not so delighted and she's now only allowed to wear them on carpet in the house. I've been calling her "Clickety-Clack" when we're out and about, so yesterday she decided to name the left boot "Click" and the right boot "Clack."

From a sensory standpoint, it's certainly fun to see her in something stylish even if she is a bit young for them. And her smile as she listens to herself walk is totally worth it. I also bought a pair of Crocs with the fuzzy warm stuff inside since she won't wear socks. One of her little friends came over yesterday and I asked him to put his shoes by the door. He did so and I said, "Didn't you have socks?" He solemnly replied, "I'm allergic to socks." I got such a giggle and told him my girls are too!

Catch-up Post - Finally!

2009-10-01T09:43:00.009-06:00

I'm sick and stuck at home so I finally have some time to post about our school shopping trip. As I mentioned in an earlier post, Mikaela can fit into women's sizes now, which opens up a whole new world of possibilities. We went to the Eddie Bauer Outlet first, and this pair of clogs were the first thing that caught her eye:

While they did look really comfy, they made her feet look really big, and I didn't think socks would feel good with that fuzzy interior. Her school dress code requires socks. She found a cute pair of black shoes at Eddie Bauer, and I went ahead and got them since they were 60% off. But they weren't just right. We headed over to Off Broadway Shoe Warehouse and only had to try on about 8 pairs of shoes before finding THE PAIR:

They're Clarks, and were expensive, but after the shopping trips from hell that we've been through in the past, I'm more than willing to pay out the nose for a pair of shoes that fit and that she likes. This was BY FAR the most pleasant shoe shopping experience we've ever had! We went on to Target and got her school supplies, and just had fun hanging with our friends. The shoes from Eddie Bauer got returned.

Mikaela's school supplies:

Sofia's "school" supplies:

And Mama's sanity supplies:

I simply can't resist a box of brand new crayons!

Party Car

2009-09-11T13:50:00.003-06:00

Well, I have found at least a temporary solution for Sofia's problems in the car. A few days ago I was flipping through radio stations, and she heard a few seconds of "Boom, Boom, Pow" by the Black-Eyed Peas. "Hey! Turn it back!" she said. So I did, and she started grooving in her car seat, and asked for it louder, and louder, and louder...as soon as it was done she asked to listen to it again, and as luck would have it I have it on my iPod, so I plugged it in and played it again. So now she asks to have a "Party Car" and we roll the windows down, blast the music, and dance! She has a couple of other favorite songs, including "Funhouse" by Pink and "No Hay Igual" by Nelly Furtado. I need to buy clean versions of "Boom, Boom, Pow" and "Funhouse" so I can quit feeling like a horrible mom and cringing when I hear a bad word. So far she hasn't repeated any of them. Knock on wood.

Also helping is that I started her on a Vitamin D supplement on the advice of my chiropractor. She's been on it for a couple of weeks now, and is wearing things that I never thought she would be able to, totally of her own accord. She's in a much better mood, not nearly as clingy, and just in general doing much better. My chiropractor also recommended supplementing her iodine, and I've heard elsewhere that magnesium really helps with sensory issues, so I'm going to research both of those and find some more supplements. Things are looking up!

Wit's End

2009-08-26T15:56:00.002-06:00

Well, I've been meaning to blog about our shopping trip, which ended up being not nearly as awful as I anticipated. Mikaela can wear womens' shoes now, and that opened up a world of possibilities. So I will talk about that soon, and I have pictures I need to upload.

But right now, at this very moment, I am at my wit's end. For reasons unknown, Sofia has been in sensory overload for the better part of the last month, and it has gotten worse and worse to the point that I just can't take it. There is nothing like a child crying and screaming in the car for 40 minutes to make you question not just your ability to parent them, but your sanity as well. We've been home 15 minutes and she still can't totally calm down, and I just took 4 Advil because my head is now throbbing.

She is back in a place where everything bothers her, nothing helps or distracts, and not only that, but she needs ME all the time. She's been freaking out if I leave the house or am not within her sight at all times. Right now she won't go downstairs and eat her snack because I'm not down there too. Part of me thinks I should just hold her and comfort her and make every effort to be with her as much as she needs me to be, but another part thinks that I'll have to be checked into an insane asylum if I do.

I blame myself, because I could have had her in OT all summer. My husband feels like she just has to learn to get used to the world, but I know there is more to it than that. Her brain is perceiving normal touch as pain. I don't want my kid to be in constant pain, or have to just get used to it. That sounds like a horrible existence.

I am sad today. I'm going to my mother-in-law's Pampered Chef party tonight, and I know getting out the door is going to be hard, as Sofia will certainly be crying and saying she needs me.

Shopping Day

2009-08-13T08:26:00.003-06:00

We're off in a couple of hours to get school supplies and shoes. Yesterday I had Mikaela try on her tennis shoes from last year, and they still fit. That is such a relief since shoe shopping is such a horrid chore, and those shoes were expensive. She said they were too tight, but we had a talk about how she's been wearing flip-flops all summer, and it's going to take a while to adjust to wearing closed shoes again. Her foot fits inside the shoe - the length is fine, the width seems fine - so we're not likely to find a better shoe. She just has to get used to it.

We will be looking for an everyday pair of shoes and a pair of dress shoes today. For the dress shoes I will likely look for lowest price since she'll only be wearing them a handful of times. Last year she had a pair of sparkly black ballet type flats from Target, so we'll go there first. I'm anticipating that she'll want to dress up for both school programs in the winter and spring, and for her occasional jaunts to the symphony and theater. Her dad and I are taking her to Wicked for her birthday in October, and I'm sure we'll all dress up just for fun.

I'll report back on our successes/failures today! Wish us luck. Sometimes I wish shopping with the kids was fun instead of total torture. Maybe someday...

Soft Clothing Coming Soon

2009-08-11T13:52:00.003-06:00

Just wanted to share an email I received from Soft Clothing today for anyone who is interested. I'm really looking forward to trying out their line!

Dear Soft Supporters,

As many of you know, we are finally launching our first collection of soft, flat seamed, tagless cotton clothing for children with sensory sensitivity in November 2009. Currently, our line is in pre-production, our samples have been tested by kids and families and approved (passed with flying colors), and our online store is designed and ready to go! It is an exciting time for Soft!

As we prepare for launch, we would like to tell you about our upcoming wholesale, retail and affiliate opportunities! Please pass this email on to anyone who may be interested. The more people who know about and have access to Soft, the more children we can help with all of those dressing difficulties!

Thank you,

Jessica E. Ralli
Director, Soft

Soft Affiliate Program

Who can be an affiliate?
If you have a website, blog or forum, you can join our Affiliate Program and earn revenue by pointing customers in need of soft, tagless, flat-seamed clothing to our online store. It's our way of saying thanks for your word-of-mouth support and patronage.

How does it work?
It's easy! We'll provide widgets/links that you can place on your website to direct visitors to softclothing.net. In appreciation for your help, you'll earn 10% of every sale that occurs on a click-through from your website.

Sounds great, now what?
If you'd like to become an affiliate for Soft, please follow this URL to the signup page: http://www.softclothing.net/affiliate/join/SOFT. We will review applications and begin sending your product links and widgets for your website in mid-September, so you can be set up in time for our launch in November!

Soft Wholesale Program

Soft Wholesale
Beginning in January 2009, we will be offering our first collection at wholesale prices to select retail partners worldwide. For information on selling Soft clothing in your store or through your website, please fill out the wholesale inquiry form.

T shirts for your organization
If you are an organization, and are interested in wholesale purchasing Soft t-shirts custom printed to your specifications, please contact Mia for updated pricing and color choices at wholesale@softclothing.net.

Soft Retail E-commerce Site

Beginning in November 2009, our introductory collection will be available for purchase through our website--www.softclothing.net! Soft cotton, flat seaming, tagless, buttonless, zipperless, fuss-free clothing for all children--especially those with sensory sensitivity--a common symptom associated with Autism, Aspergers, ADHD, and Sensory Processing Disorder.

2010 will be an exciting year for Soft as well, as we will be launching our Soft Jeans line, seamless socks and tights, limited edition printed tees, outerwear, underwear, and the first toy in our Soft Toy line!

Please have a look around our site, and tell us what you would like to see added, what you think could enhance our look, collection, navigability, etc... We welcome your suggestions and feedback, as always.

Thank you!

And So it Begins

2009-08-03T10:30:00.003-06:00

We are trying to get ready for school, which starts the 17th. The summer has just flown by! I've got to ascertain whether or not Mikaela's shoes from last year are going to fit this year. I doubt it, as I think she's grown at least four inches this summer. Luckily, her dresses will still fit, and I bought four new pair of leggings to go underneath. I don't know how she can stand to wear the leggings when it's hot, but since she won't wear underwear or bike shorts, there's really no other option. She could wear yoga type pants, but won't because there is a rule about shirts being tucked in and she just can't stand that. She started crying in Gymboree the other day when I suggested it. I suppose I could talk to the principal and ask if she could wear her shirt out. He's been really understanding about her sensory issues, so maybe he would go for it.

So my agenda for the next couple of weeks is to get all paperwork in order, buy school supplies, go shoe shopping (oh, the horror) and make sure she has enough clothes! Fun, fun, fun!

A Great Tool

2009-07-22T20:28:00.002-06:00

I just discovered a great website via Sweet Alexis' food allergy blog. It is Select Wisely, and they offer traveling translation cards for people with food allergies. I think I might order one in Spanish for when we go to Mexican restaurants. Most are perfectly safe, but we've had trouble at times. One waiter was confused by our question about peanut oil and when we first asked if they used it he enthusiastically said yes. Then apparently our expressions changed, and he gravely shook his head and said, "Nooo." We finally asked him to show us what kind of oil they used and he brought out a big jug of canola oil and said, "Good for health!" I've also heard that some restaurants use peanut butter as a thickener for refried beans or chilé, though that is more common on the East Coast.

Okay, sorry for veering off into food allergy world, but it is a big part of our lives as well. I don't think I wrote here about Mikaela's anaphylactic episode in May. It can be found here on my other blog.

Bummer

2009-07-10T13:42:00.002-06:00

Not an hour after I posted my last post I got a call that Champ Camp has been cancelled over H1N1 flu concerns. Mikaela is bummed, but she has such a positive attitude about it. It relieves the stress of getting ready and worry while she's there, but I was very excited too. Next year!

Sigh

2009-07-10T10:33:00.002-06:00

So, because of this lazy summer we've been having, I haven't done any of the things I intended to. I had hoped to get Mikaela's last two approved OT visits in, and make a few for Sofia as well. There is a bright pink Post-It note that has been stuck to my monitor for weeks. "Make OT appts!" Oops. I'll try to get on that today.

I also intended to have Mikaela wear tennis shoes for several hours at least a few times a week so that it won't be such a difficult transition when school starts. I'm already dreading fall, and it is quickly going to be upon us. I should probably have her wear them a few times this next week, since the week after she's off to camp. It will be her first time, and we are both nervous and excited.

Champ Camp is for kids with asthma, and they also know how to deal with food allergies. If there's ever a camp she could attend, it's this one. It's hard enough to let your kids go, but severe food allergies make it so much harder. I'm going to be doing a lot of deep breathing while she's gone. Luckily she'll only be about an hour away, so if anything does happen we can be there quickly.

We've got a very busy rest of the month, with some out-of-town visitors coming in, camp, and starting to think about school. I'd best start looking for comfy clothes that fit the uniform requirements!

The Lazy Days of Summer

2009-06-24T09:35:00.008-06:00

We are having an extremely lazy summer, and I have to say it is kind of nice. The girls have been playing video games, watching movies, reading (Sofia sits and leafs through a picture-less book while Mikaela reads silently), playing with friends, going to the library, swimming, putting on shows/dances, stealing my camera and taking ridiculous pictures, and just hanging out. Summer is so much easier on the sensory front, since they can basically wear whatever and it's fine. Sofia is still crying after bath time when it's time to get new undies on, but she's seeming to be adjusting more quickly. I have her put them on then let her watch a movie for the distraction. It works pretty well.

Evaluation Results

2009-06-09T22:35:00.002-06:00

We just got Sofia's Occupational Therapy evaluation results, and it came back with a diagnosis of Disturbance of Skin Sensation and Lack of Motor Coordination. It recommends weekly one hour OT sessions for three months, with another evaluation at the end of that timeframe to see if continuing is necessary. Now I just have to hope that our insurance will cover that many visits. It is also recommended that she be evaluated by a psychologist to "assess her behaviors of getting quite anxious with life experiences and with her fears." (Interesting that my last post was all about that!)

There are seven goals for OT, that Sofia will eventually:

1. Demonstrate comfort with daily tactile experiences and be able to dress herself without deterioration in her behavior.
2. Select and wear clothing which matches the season requirements.
3. Be able to use sensory based activities, when guided by an adult, to help calm herself when upset, to calm as she is shifting to high arousal or agitation and to prepare for a challenging task, and extinguish reliance on nursing for calming.
4. Be able to use picture schedules, social stories and other strategies for improved self regulation and success with challenging tasks, such as going to the dentist. (I mentioned to the therapist how we haven't taken her to a dentist yet because she freaks out just talking about it.)
5. Be able to engage in physical play with her sister and peers without being too forceful and causing injury.
6. Be able to manipulate large buttons, zippers, and loose snaps, as expected for age level, without adult assistance.
7. Be able to complete age level construction tasks successfully, without frustration and avoidance.

Sounds good to me! I'm excited to get started.

Sensory Anxiety

2009-06-08T00:47:00.002-06:00

The girls spent the weekend with my parents, and while overall they did great and had a fun time, it was sad to see how much anxiety Sofia went through over the anticipation of sensory overload. She was really worried about riding in their car and the seat belt being too tight. She was also worried about taking a bath there, and sleeping in another bed, and the possibility of Grandma or Grandpa making her wear something she didn't like.

When we picked them up today she wasn't wearing underwear, and had told my mom flat out, "If you make me put them on I'm going to cry. I always do." Of course Grandma didn't want tears and didn't push the issue, but I told Sofia she needed to put them on. She did cry, for about half an hour. It was hard to get used to them again after a 24 hour reprieve. She did end up riding in their car, and I talked to her a little bit about how she thought it was going to be horrible and then it wasn't. It makes me sad to see a 4-year-old have such anxiety over such seemingly trivial stuff, especially when overall she is a fun loving and go with the flow type of kid!

Mikaela got a little homesick, and when I mentioned that perhaps the summer camp she is wanting to go to in July might not be such a great idea, she said she still wants to try it. Luckily it's not too far away, so we can go pick her up if necessary. It's a special camp for kids with asthma, and they also know how to deal with food allergies, so if there is ever a camp she'll be able to go to, it's this one. I'm a little anxious for her, but at the same time so proud that she wants to go.

She's always been very determined. When she was about 4, I signed her up for a rec center class where they tried a new sport each week for 5 or 6 weeks. She was the only girl, and every week she cried her way through basketball, soccer, t-ball, etc. I always told her that we could leave if she wanted, but she always wanted to stay even though from my perspective it looked like sheer torture. Finally the last week the sport was track and field, and she was overjoyed. That was when she discovered her love of running. I'm glad she stuck it out.

Both girls just got adorable new haircuts - I'll get some pics up soon! From a sensory standpoint short hair is so great. Both girls just cry and whine every time we brush, and now it will be much, much easier.

Mellow Yellow

2009-05-31T21:22:00.006-06:00

Sofia won her Mulan Barbie! She's very excited and has been playing with her all day. I am also happy to report that we've discovered that a rice filled heat pack placed on her tummy helps her after a bath when she's trying to adjust to having underwear on again. We still have tears, but it's not nearly as dramatic as it has been. Here she is in her yellow dress. She also has pink and purple. I'm in the process of going through both girls drawers and closets and just getting rid of all the things they don't wear. Why keep more than the handful of things they actually like, right?

Two Thumbs Up; Two Thumbs Down

2009-05-26T21:49:00.002-06:00

First thumbs up is that Sofia has been doing a great job with underwear and she will earn her Mulan Barbie at the end of this week! Second is that she likes the dresses! But, we had a long drive today and she cried a lot about her seat belt, and she hated the bike shorts. But since she's wearing underwear we don't really need the bike shorts anyway. I'll have to get some pictures of the new dresses. She got yellow, pink, and purple, and already horribly stained the yellow one with chocolate cake. Maybe I'll just get two more dresses when I return the bike shorts.

That's about all I have in the way of updates. My mom had an interesting thought in the car today, that it seems like Sofia seeks out a sensory experience in order to override a difficult one. She was crying about her seat belt, and rolled down her window and just laid back and felt the wind in her face. As soon as I asked her to roll up her window because we had the air on, she started crying again. I've often wondered about the dichotomy of being simultaneously so tactile defensive and yet so sensory seeking. It makes a lot of sense. I'm going to observe to see how often it is true.

Things are Looking Up

2009-05-13T11:11:00.004-06:00

Well, the OT appointment went really well. I was worried Sofia would flip out like she does at the doctor's office, but she did great. The therapist had her do a whole series of "games" and challenges for her overall evaluation. Sofia did balk at a few, saying that they were too silly, but other than that she enjoyed herself and really bonded right away with Sharon. I should get the evaluation results within three weeks, then we will schedule our next appointment and start the real therapy. Sharon said since we have Kaiser they will likely only approve 4 visits since that's what they did with Mikaela. She assured me that she will teach me lots of things to do at home to make up for the lack of visits.

Sofia had a bath on Monday, and I just let her run wild for awhile afterward, and the next time I saw her about 20 minutes later she had underwear on! She was beaming and said, "Look, Mama, I put panties on all by myself and I'm NOT CRYING!" She got lots of high fives and praise for that, and we went and added a sticker to the calendar. I bought a Mulan Barbie at the beginning of the month (the only Disney Princess Barbie she doesn't yet own), and told Sofia she could have it after filling up the calendar with stickers. I've been very lax with what gets a sticker. Basically she gets one for wearing underwear, regardless of the amount of crying that happens, but the crying has dissipated considerably. Sharon said a reward system is great, and it will help Sofia to learn how to self regulate. Of course we are going to do all we can so that hopefully eventually the panties won't hurt, but we just needed some sort of solution to lower the emotional heat in our household. Everyone gets extremely tense when Sofia is screaming for upwards of an hour!

I'm waiting on the dresses and bike shorts to get here, and crossing my fingers that she will like them. I'm tired of taking her out in a nightgown. Oh, and that was Sofia's main concern when I talked to her Monday night about her OT appointment the next morning. "Can I wear jammies there?"

Mikaela has been a bit under the weather with a slight cold, and having a horrible time with her shoes. I woke up because she was wailing this morning, and I think she ended up wearing snow boots to school. It was 90 degrees yesterday, so I hope her feet aren't sweltering all day. The whole school is going bowling today, though, so at least she'll get to take them off for awhile. But then again, hopefully she'll be able to wear the bowling shoes!

Here are a couple of recent pics of Sofia. I went upstairs to find her after a long day of playing. It looks like she fell asleep standing up and then just fell over.

Hope on the Horizon (I Hope)

2009-05-08T14:53:00.004-06:00

We are still in a bad place and I am just downright depressed lately. It's so hard to know what to do. My only rule lately was that Sofia be wearing underwear under her nightgown to leave the house, and she still just opted to stay home. So I had to put my foot down this week and also not let her watch movies or play on the computer unless she has panties on, which may seem mean for in the house, but I don't want her to think that I'm okay with staying home and being a couch potato because clothes feel badly. I went and bought two new kinds of underwear, one of which was $18.50 for a pack of three (Hanna Andersson). If they work of course it's totally worth the money, but I am only washing up one pair to try and if they don't work I'm going to sell the unwashed ones for $5 a piece on my parenting board.

I'm a horrible mom and let Sofia go 2-3 days at a time without bathing or changing clothes because I can't stand the several hours of crying after her bath about putting new clothes on. She bathed a couple of nights ago and I just sat and plugged my ears while she cried and she started screaming even louder and went ballistic and tried to pull my hands off my ears. Then I just felt guilty for making her even more upset, especially when even with my ears covered I heard her say through convulsions, "Mama, I just need something to heeeeelp meeeee."

She doesn't want to be this way. I know she doesn't. She loves clothes and especially the cute factor that comes along with them. We got out the size 5 bin of clothes from when Mikaela was her age, and just sorting through the box brought back all the memories of how we've been here before. There were no less than 25 pair of underwear of different sorts in that box, and all but a couple of pair looked brand new. Then the clothes...so many, and just three pair of sweats and a few t-shirts looked worn. Sofia pulled out a swimsuit and got very excited about it, declaring, "I'm going to be so cute!" Within minutes of putting it on she started crying, but she refused to take it off. "I want to be cute. I'm going to try to get used to it, Mama."

So, the good news is that I simply packed up that box of clothes and sold it to someone on the board, and I think I'm going to put the money towards buying two or three simple dresses and bike shorts, and those will be her uniform for the summer, and panties under the bike shorts will be totally optional. Also, her first occupational therapy appointment is finally around the corner (Tuesday), and I'm hoping it will be helpful.

Stuck in a Rut

2009-04-30T09:08:00.002-06:00

We are having a rough go of it lately. Sofia can't seem to wear anything without crying that it hurts. In fact, her pajamas keep mysteriously disappearing during the night. Twice in the last week we've been surprised to find a totally naked girl in her bed, and the funniest part is that she was as surprised as we were! Clothes must really feel bad if she's taking them off in her sleep without even really knowing it.

She's also having a really hard time in the car because she can't stand her seat belt. About a month or so ago I switched her from a 5pt harness to a high back booster because she used to complain about the harness, but the novelty of being in a big girl seat has apparently worn off. She wants the belt very loose, and of course that's not safe! We've been stuck at home quite a bit, and it makes me sad to see her choose staying home over going somewhere fun if it means putting on underwear. I'm going to try buying the next size up to see if it helps at all.

Mikaela's been having a rough time as well, and this mama is on the verge of pulling her hair out. I know I need to be more consistent with the brushing, but I've been under a lot of stress lately with some of my own health concerns, not to mention just keeping up with household stuff. I need to make it a priority but it's hard when I feel so behind on life in general.

I just bought a mini trampoline, and supposedly it will help the girls to get some daily jumping in. It will be part of their "sensory diet," which is the amount of sensory input they're getting each day. I'd like to also get a couple of those stress relief squeeze balls for Sofia, to see if it decreases the amount of times that she pinches and squeezes me in a day! It's worth a shot.

Comfort over Fashion

2009-04-24T13:25:00.003-06:00

In my ongoing effort to let go of the little things, lately I've let Sofia pick out whatever she wants to wear, and let her change clothes throughout the day as needed when something starts bothering her. I just wanted to give an example of one of her outfits:

It may not match, but comfort is all that matters to my kids!

Parenting is Hard

2009-04-20T10:45:00.002-06:00

Duh, right? It's been a rough week, and not all of it has to do with sensory issues, though that is usually the icing on the cake and the thing that makes me feel like I'm just not cut out for this parenting gig. It amazes me how one child just flat out refusing to wear clothes and the other upset about not getting to wear flip-flops in the snow can just send me flying over the edge.

My relationship with Mikaela has felt very volatile of late, and as she gets closer to those teen years I keep questioning whether I am doing everything "right," or at least, "good." Her sensory issues have been the one constant, but other things of late have snuck up on me and left me at a loss. Boys crushing on her and wanting to "go out." She's 10, for goodness sake! It doesn't help that she's a grade ahead and in a 5th/6th grade room. So 12-year-olds are falling for her. Lately she's also been struggling with her peanut allergy, and I'm wondering if counseling may be helpful. She struggles with anxiety, and I know I do too on her behalf. I think that as she gets older and more independent it's scary for her to start to take over the responsibility of dealing with it.

This morning was really rough, as she had a hard time getting up and ready, and I had to stand over her and make sure she was doing everything she needed to. We were both pretty emotional by the time she walked out the door, and I noticed she arranged her socks and shoes even more than she usually does. It seems that both girls have a very low sensory threshold when other things are not going well or they are sick. Sofia has had a lingering cough from a cold and she has just had a really hard time with clothes this past week.

Sofia told me repeatedly last night that she didn't like me. She is still nursing, which I know is unusual in American culture to be nursing a 4-year-old, but actually I've realized there is a sensory piece to her refusal to give it up. From the moment she was born she had an extremely strong need to suck. Our first night in the hospital was horrible. She would SCREAM unless she was on the breast. She would actively suck for as long as I would let her, and the longest I would last was about 45 minutes per side. I would fall asleep with her in my arms, then wake up Alex and ask him to take her. He would pace back and forth across the room with her screaming in his arms. By the time we went home my nipples were cracked and bleeding. I introduced a pacifier when she was just two days old, which is normally not recommended as it can interfere with breastfeeding, but it was never an issue. She literally needed to suck 24/7.

Last night when I refused to nurse since she'd already had her "bedtime nana milks," she cried and whined, told me she didn't like me, then shoved her thumb in her mouth. She hasn't sucked her thumb since she was about 10 months old. It made me realize that she hasn't lost that need to suck, and I've also known that she craves the touch that comes along with breastfeeding, as she still squeezes, caresses, and pinches my arms while nursing, and it takes a lot of energy on my part to keep her down to only nursing twice a day. She requests it far more than that, and even when I say no she needs lots of hugs and snuggles to be okay with waiting until bedtime. I'm feeling hesitant to publish this since extended nursing and child led weaning are not exactly popular choices, but in Sofia's case I feel that not giving it up is in part a sensory seeking behavior.

What is Sensory Processing Disorder?

2009-04-13T16:40:00.003-06:00

Jenn commented that she doesn't understand any of this. I certainly don't completely understand it, but I'm getting it more and more every day.

Here is the short definition, from Wikipedia:

Sensory Integration Dysfunction (SID, also called sensory processing disorder) is a neurological disorder causing difficulties with processing information from the five (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SID, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SID; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion.

Here is some info from the book reviewed in my last post (The Sensory Sensitive Child):

...sensory integration can be broken down into three complementary processes: sensory modulation, sensory discrimination, and motor planning.

Sensory modulation is the brain's automatic adjustment to the intensity with which sensory stimuli are experienced. When sensory modulation is efficient, the nervous system responds to some input while disregarding other sensations. We are able to tune out or tone down annoying or distracting stimuli. Sensory discrimination is the ability to distinguish one sensory experience from another. It is how we know that an itch on our arm is not an itch on our lower back, that a siren is coming toward us rather than moving away from us. Motor planning, or praxis, is the ability to translate sensory input into organized, purposeful motor output. The process of motor planning includes (1) coming up with an idea about the action, (2) having an accurate sense of where the body is, (3) starting the action, (4) executing the steps in the appropriate sequence, (5) making adjustments as needed, and (6) knowing when to stop the action. When motor planning is efficient, sequenced movements are executed smoothly; over time, we no longer have to think about how to do them.

Together, the processes of modulation, discrimination, and motor planning make sensory integration possible. It is this silent interaction between our brains and our bodies that enables us to move through the day in a purposeful manner. We do not think about the sounds we are not consciously noticing, the mechanics of sitting in a chair, or the location of the third finger on our right hand as we slide a button into a buttonhole. Instead, our brain does this work for us outside the realm of consciousness. It receives and sorts countless tidbits of sensory information, then allows only an essential fraction of it to pass to the thinking parts of our brain.

Okay, so hopefully that helps! This is a disorder that is not really fully understood, and it can go hand in hand with other disorders or stand alone. Some of the behaviors in my children that I have noticed over the years that have led me to SPD are that they both have a hypersensitivity to clothing and shoes. That is their one similarity. Mikaela also has had issues with loud noises, bright lights, touch, has difficulty learning tasks such as tying her shoes and riding a bike, has never liked activities that require movement such as swings or slides, often gets carsick, and seems to have some auditory processing difficulties. Sofia craves fast moving activities and lots and lots of touch. She categorizes people and things as "squeezy" or "crunchy," and she highly prefers "squeezy." Her need for touch is so strong that she has very little self-control when it comes to pinching, squeezing, hugging, and wrestling. She also has a hypersensitive nose.

Finally - Book Review Number One

2009-04-10T19:00:00.002-06:00

The Sensory Sensitive Child: Practical Solutions for Out-of-Bounds Behavior

Overall, I did like this book. It took me a long time to get through, but I whizzed through Part 2 because it had the kind of information that I was really looking for. Part 1 was a little tedious, as it explained the why and how of sensory processing problems, but Part 2 delved into the practical solutions. Two chapters in particular were just what I was looking for -

Chapter 6: Helping Your Child to Help Himself
Chapter 7: There's No Place Like Home

The most important thing I took away from Part 1 is understanding that my children's seemingly irrational reactions to clothing and shoes happens because their brains literally go into "fight or flight" mode when they cannot modulate or regulate their response to sensory input.

Some of the ideas from the book that I'm hoping to implement:

- Let go of the little things. I feel like I already do this a lot, but I'm going to try even harder. I will just take a deep breath when the only thing Sofia is comfortable in is a nightgown, and try not to care when people comment.

- Turn down the emotional heat. This is a big one in our house. The emotional intensity can get very high very quickly, and I need to practice self regulating behaviors so that the girls will learn them too, like taking a deep breath and counting to ten or keeping my voice calm even when I am upset.

- Change your thoughts and your feelings will follow. As I mentioned in a previous post, I think that until now I have tolerated but not accepted, and I want to change that. I need to stop thinking of my children as unmanageable and difficult. Don't get me wrong, I don't think of them that way all the time. I of course love them fiercely and love their quirks and unique personalities, but countless episodes of total meltdowns has led me to label them as strange, and that isn't really fair.

- Chill-out before time-out. I really like this one, and it suggests having the children take a voluntary "chill-out" when they sense they are spiraling out of control or feel they are in sensory overload. When Mikaela was little and often hypersensitive and overreactive, my mom taught her to stop and ask herself, "Am I hungry? Thirsty? Tired? Do I need my inhaler?" That worked really well with her and I think this chill-out technique will too.

- Plan ahead. "Children with sensory processing problems often feel internally disorganized; consequently, they are more dependent on external organization." At the beginning of the year I implemented a chore chart for the girls and they have done really well with it, and Mikaela does much better with morning and bedtime routines when she has a list to reference, rather than me constantly reminding her what to do. "Less nagging = less resistance = lower emotional heat." So true!

The other thing I gleaned is to always look at situations through a sensory lens, and to ask myself, "Is there a sensory piece to this problem?" For example, in Mikaela's last therapy session, her reaction to the joint compressions did seem to have a sensory piece, in that the therapist's touch felt bad to her. Likewise, Sofia recently got upset in a coffee shop and suddenly desperately wanted to leave, and at first I wondered why she turned on a dime like that, but then started to smell what her hypersensitive nose had caught way before mine: someone had thrown up, and she simply cannot handle bad smells. So we left!

New Shoes!

2009-04-04T14:30:00.006-06:00

Well Mikaela's running shoes got here and they're slipping a bit on her ankle, so we're going to try gel inserts to see if they'll fit a bit better. She will only wear ankle socks from Gymboree, and she could use a few more pair, so I'm going to see if I can find some either here in town or online. These are some rockin' shoes. I'm thrilled she likes them!

I also bought both girls Adidas flip flops, with a nice thick sole and "comfort foam." I get so worried every summer about them running around in $5 flip flops as they're not exactly supportive. These are practical and cute. Win-win!

Yesterday I felt like I'd walked into some bizarre parallel universe, as Sofia insisted on wearing her flower girl dress (from my brother-in-law's wedding last August) to the coffee shop. She wore a shirt and a skirt on the way, because she thought the dress would bother her in her car seat, then I helped her change in the car before we went in. She had a blast as everyone was commenting on her beautiful dress, and when we left she decided to try wearing the dress in the car. "Don't drive yet," she said, "We have to investigate!" So she sat in her seat and exclaimed, "It feels good!" So then we tried putting on her seat belt. "Still don't drive! We're not done investigating!" Lo and behold it worked:

As if getting through lunch time without tears over clothes wasn't enough, we went to Target to buy a ballet leotard as Sofia has been begging to take a ballet class. I hesitated about tights. Neither child has ever been able to tolerate tights. She really wanted them, so I got them and opened them up carefully when we got home, noting exactly how they were folded in case we ended up taking them back. She's been wearing the ensemble for pretty much 24 hours now, with the exception of when she was sleeping. Amazing!

Mikaela is tolerating brushing really well. Actually, she loves it. I just started with Sofia this morning, because she noted how much Mikaela likes it. They were arguing over who got to go first!

Well that didn't go well...

2009-04-02T20:03:00.002-06:00

Our insurance only approved four total OT visits for Mikaela, so today was our second. The appointments are only 45 minutes, and the therapist wanted to teach me the brushing/joint compression protocol. Mikaela did fine with the brushing, but after the joint compression she got very quiet and sort of drew into herself. I asked what was wrong and she wouldn't really say, but she ended up getting very upset and spent the rest of the appointment crying so we didn't get to do anything else.

She wanted to go home, and told me she didn't like the therapist and thought she was insulting her. The therapist had said that she just wanted to help Mikaela to be happier in her body, and Mikaela insisted that she is happy and she's fine, and she doesn't want or need to change. She has been very resistant to change her whole life. When she was two my mom told her at the end of summer that soon the leaves were going to change color and fall off the trees, and it took several hours to get Mikaela to calm down. She also had a total screaming meltdown when we moved the location of our refrigerator. She almost turned purple and was screaming, "Put it back!! Put it back where it goes!"

We had a talk on the way home about how sometimes change can be good, and that by pursuing therapy I'm not trying to change who she is inside. I'm just trying to make life easier for her and for all of us. She has a very severe peanut allergy, and I asked her if she would want a cure if one was ever discovered. She instantly said, "Yes!" and I reminded her that it would be a change also, but it would not change the essence of who she is on the inside, just a medical condition that she happens to have that is a real nuisance. She readily admits that she doesn't feel comfortable in clothes and shoes, but for some reason she thinks that it's an important part of who she is.

We are going to do the brushing every two hours, and for now I'm going to skip the joint compressions. She couldn't describe the way it made her feel beyond, "Really icky," but I want to respect her feelings. I told her that perhaps we could try the joint compressions in a few days after she's gotten used to the brushing, and see if it feels any different than it did the first time. I also told her we will be finishing up our two OT appointments, and hopefully next time she'll get to do something fun like try out the swing or play in the ball pit.

I'm tired.

Frustration and Guilt

2009-04-02T11:14:00.003-06:00

I'm still working on getting the book read, but I got to a chapter last night that made me collapse into tears:

If your child has sensory processing problems, she is going to need more support, more patience, and more understanding from her family. She is high maintenance, and your job is to do what you can to keep her from falling apart. In order to do this, you must accept her as she is, not as you wish she would be.

I was flooded with all the memories over the years of being so frustrated with Mikaela, and just not understanding why she is the way she is. I told her countless times in regards to clothes, "You'll get used to it. Just please stop crying." I remember feeling embarrassed that she was scared to go down a five foot slide or get on a swing. Over the years I feel that Alex and I have learned to tolerate her differences, but not truly accept them, because we simply don't understand. Her perception of the world is so different than ours. Another passage:

When sensory integration breaks down, the cortex is unable to perceive, analyze, and solve problems effectively. The child is unable to organize a well-planned, meaningful response to the requirements of the moment. Limbic and lower brain processing take over (fight or flight mode), which can result in overly emotional, inappropriate behavior that the child himself cannot explain or defend.

That has been the story of our lives. Why is she freaking out over something so small? Our frustration and anger would rise exponentially with her meltdowns. I feel like such a bad mom. I know that when you know better, you do better, but I just hope I haven't done any permanent damage, to her or Sofia.

She has an OT appointment this afternoon; we had to reschedule last week because she was sick and there was a snowstorm. I'll post tomorrow how it went. Thanks for reading.

Success...almost!

2009-03-24T22:19:00.002-06:00

I took Mikaela shopping for running shoes today. Our selection was severely limited since she is unwilling to try learning to tie her shoes right now, so she only tried on a couple of pairs with velcro. Low and behold, after a few tears were shed over the first pair, the second pair worked! Only they were a bit small and the store didn't have the next half size up. I wrote down the information and cannot find them online. So frustrating. Actually I found them at one place for $54.95, and they were $29.99 in the store. I'm going to call around to some local places tomorrow to see if I can find them.

I'm still working on the book and am continuing to learn a lot. Hopefully I will get it finished this week.

I also got a couple of surgical scrub brushes from a friend who is an anesthesiologist so that we can start a brushing protocol with the girls. I don't know that much about it at this point, but another friend is going to come over and show me how to do it and also how to do joint compressions. I have heard from several people that both things can be very helpful.

The first step of the Wilbarger Protocol involves providing deep pressure to the skin on the arms, back, and legs through the use of a special surgical brush. Many people mistakenly call this technique "brushing" because a surgical brush is used. The term "brushing" does not adequately reflect the amount of pressure that is exerted against the skin with the movement of the brush. A more appropriate analogy would be that it is like giving someone a deep massage using a surgical brush. The use of the brush in a slow and methodical manner provides consistent deep-pressure input to a wide area of the skin surface on the body. Ms. Wilbarger has found and has recommended a specific surgical brush to be most effective. The face and stomach are never brushed.

Following the "massage" stage, the child receives gentle compressions to the shoulders, elbows, wrists/fingers, hips, knees/ankles, and sternum. These compressions provide substantial proprioceptive input.

Entire article can be found here.

I Wrote Too Soon

2009-03-19T23:47:00.002-06:00

Sofia has had the same pair of socks on for two days. She put them on completely of her own accord and now won't take them off. I think she is so determined to overcome and to please me that she's forcing herself to get used to them. She excitedly came in to to show them to me, and made this long declaration about how she wasn't going to "stretch" her clothes any more, and that the "strings" wouldn't bother her, and that she was always going to wear clothes and not cry even in wintertime, and summertime, and "when it's snow time." It was very sweet. She's still had her moments over other clothing items, and she changed clothes numerous times yesterday and today, but I'm fascinated and thrilled by her sudden take charge attitude!

I'm still reading the book I mentioned, and from the very beginning something that really resonated with me was the authors' assertion that these kids are not trying to be defiant or obstinate. In fact, just like all kids, they have a deep desire to please but the constant state of overload makes it nearly impossible for them to do so. They are not bad kids; their senses have just betrayed them.

Mikaela has her second Occupational Therapy appointment next week. The first was just an evaluation, and the therapist said that our insurance balks at paying for OT, especially for older kids, but she's going to try to get them to authorize as many visits as possible and teach me things that we can do at home. Sofia has not started OT yet because she was referred to a different practice and the first available opening was in May. I'm interested to see what Mikaela will be doing in therapy.

No Socks, No Shoes, No Screaming

2009-03-16T09:51:00.002-06:00

I think the toughest area for our entire family in dealing with this has been socks and shoes (hence the blog title). Both girls have had major issues. Summer is bliss around here. They can wear sandals or flip flops and everyone is happy. When fall rolls around, though, the tears commence.

My husband Alex and I have joked that telling the other person to go shoe shopping with Mikaela would be akin to saying "I don't love you anymore." It is that difficult of a task. We tackle it together and go from store to store, and inevitably she and usually I end up in tears after she's literally tried on hundreds of pairs and nixed them all. This one has a lump. This one is too tight. This one is not tight enough. This one is scratchy. Then I will find something that looks smooth and non-scratchy, and it will be nixed by a more normal childhood concern - that looks stupid, Mom. Our selection is also limited by the fact that she can't tie her shoes. We've tried to teach her and that always ends in crying as well.

I am currently reading The Sensory Sensitive Child: Practical Solutions for Out-of-Bounds Behavior, and I will write a thorough review when I'm done, but so far I've learned that not being able to tie her shoes and having difficulty trying to learn how to ride a bike are clues that Mikaela has difficulty with motor planning. Motor planning is the ability to assess a task, decide on an action, execute the action, and make adjustments as necessary. In kids with SPD, for some reason the neurotransmitters necessary to do everyday tasks are short circuited, and it isn't helped by the fact that they feel assaulted by the sensory information coming at them from every direction. Most of us can subconsciously tune out the noises and sensations that we don't need in the moment, and these kids can't.

We've tried numerous solutions to our sock and shoe problems. For several years Mikaela wore her socks inside out. Eventually I bought seamless socks from an online diabetic store. Those worked for awhile, but they ended up feeling too loose to her and she didn't like when they fell down. She now is quite happy with knee socks from Gymboree, but we still have the occasional morning when she is in sensory overload and a seam not feeling right is the tipping point for a full blown meltdown. We've also had good luck with Land's End shoes. A couple of years ago I bought a pair of snow boots and she loved them, so I quickly bought the next three sizes. You learn to do that: if something works buy it in every size! Tennis shoes are much more difficult, and this year we finally found a pair of velcro Converse type shoes at Gap (in the boys section). She tightens the velcro so much that it looks a little ridiculous, but she doesn't seem to care since they feel alright. However she likes to run and we are finding that they are not supportive enough for that. I'm dreading the thought of going shopping for running shoes, but at the same time I am thrilled that she has found a physical activity that she really enjoys and absolutely want to encourage it!

Sofia's problems with shoes are similar, and since she has a much more fiery and noncompliant personality than her sister, her solution is: don't wear socks! Back in August she was a flower girl in her uncle's wedding and got two new pairs of sparkly shoes; one for the ceremony and another for the reception. She wore the reception shoes for months after, and when I finally couldn't stand the stench any more, I told her we needed to throw them away. She was surprisingly more willing than I thought she would be, and we went and bought a pair of Disney princess tennis shoes and Littlest Pet Shop socks (characters are enticing at this age). I think she's worn those shoes all of twice, and cried the entire time they were on. She remembered she still had the silver ceremony shoes in the back of the closet and now that is all she will wear. I bought her snow boots and she's worn them once. I even bought a pair of leather moccasin type slippers, thinking she could wear those out as long as it wasn't wet outside (which it rarely is in Colorado, especially this winter), and she doesn't like them.

I've tried "making" both of my kids wear socks and/or shoes (not to mention jackets, coats, underwear, pants...) at various times, and I've learned that they don't get used to it or decide that it doesn't feel as badly as they originally thought. They have literally cried for hours, and in the end it isn't worth it for any of us to force them to wear anything. I haven't got to the "Practical Solutions" portion of the book yet, but I'm hoping it will hold some good suggestions for our sock and shoe dilemma.

Welcome! (And Why I'm Starting This Blog)

2009-03-13T15:34:00.000-06:00

This last Friday I was really excited to take my four-year-old daughter Sofia to our weekly play group. We had missed the previous three weeks due to illness and a funeral, and I was really looking forward to reconnecting with friends. I got up, got myself ready, then took a deep breath and braced myself for the dreaded daily task: dressing Sofia.

I picked out one of her soft cotton dresses and pulled it up over her feet as usual. (She hasn't been able to handle having clothes pulled over her head since she was two.) Within moments she collapsed into a heap on the floor and started crying, yelling, "The strings! There's strings in it!" I let her take the dress off, and we looked through her drawer and closet for clothes that she would be okay with. We were unsuccessful, after trying a few more things, and she just wanted to wear her nightgown. I don't like taking my child out in pajamas, as people do tend to notice and make comments, so we ended up staying home.

I have been through this so many times, and I was so disappointed that I started to cry. Sofia was sad that I was crying and asked what was wrong. I explained to her that it was hard for me when she refused to wear clothes, and I was disappointed that we weren't going to see our friends. She started to tear up and said, "I'm sorry that I cry about clothes, Mama. They just feel so bad."

Getting dressed should be simple. But it's not, at all, and never has been in our house. My eldest daughter has sensory issues too. When Mikaela was little I just thought she was overly sensitive. Since she was my first I had nothing to compare it to. I just accepted her differences as our normal. It wasn't until a couple of years ago that someone recommended The Out-of-Sync Child to me that I realized Sensory Processing Disorder is a very real condition.

I do feel a little dense for not figuring it out earlier, but now that I have and have reached the end of my rope, I am jumping in with both feet so that I can help my daughters. I am going to be reading and reviewing books here, charting our progress through Occupational Therapy, processing my feelings, sharing helpful links, and probably doing a little ranting and raving when I'm feeling totally overwhelmed like I was last Friday.

I hope to find other parents that are wading through this journey, so we can help each other and just plain commiserate about raising "sensational" kids. Welcome.