How do I explain that this is not just a behavioral problem?

by Sarah
(USA)

My daughter is almost 6 and is still having a terrible time with clothing. Mornings are very stressful in our house, to say the least. I have even had to arrange for my older daughter to get a ride to school in the morning because my SPD daughter could not get dressed to take her to school. I have tried everything I can think of, read about and taken others suggestions. I am at a complete loss of what else to do.


Her school focuses on children with disabilities. It was not easy to get her in here and she is in a class to prepare her for kindergarten. She also has developmental delays which was the basis I used to get her into this school for the year. I have struggled with every school I have sent her to about the fact that she doesn't wear underwear. I have explained the reasoning for it but everyone seems to think it is behavioral. I know it is not just behavior. I have worked with her to the point in the past that she is able to put underwear on later in the day at school. That is not good enough for her school now. They are trying to help her by asking me to make sure she comes to school with underwear on at least twice a week. Of course I would love for her to do that! If only it were that easy. Some weeks we can accomplish this, but others it just does not happen.

It makes me feel like I am failing as a parent because I can't get it done. She was getting OT through my insurance up until last summer but the school she goes to now does a good job at integrating sensory rich activities throughout the day. She really has improved but I feel like everyone is always wanting more and it's never good enough. I think I need to get more of a diagnosis but since it's not in the DSM yet, I'm not sure how much good it will do for school. How do I make people, including her special ed teacher, understand that this is not behavioral? She is able to keep it together at school, which I think should be applauded - instead they just want more! But, the minute she comes home it all goes down hill. Please help! I don't know where to go from here.

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Mar 07, 2011
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SPD
by: Anonymous

Yes, it always does seem like everyone wants MORE AND MORE> somedays it's just hard to survive with this issue and I'm sure it's hard just to get through the mornings!! I know the feeling..

Explain it to people and just accept that some will be supportive and some will not be. Some will probably think it's you and others will understand. Also, there are plenty of us that understand (me included!!) It's hard. I know sometimes I feel like even those in my own family have no idea what I go through with my son. It's SO TOUGH somedays.

Also, I think to myself, I want to be able to reach out and help others one day, maybe that is what this hardship is for...

Dec 15, 2010
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One other suggestion
by: Anonymous

Kinda like the leotard effect, you could try spandex bike shorts. I've also heard some kids really like the feel of Under Armour brand underwear and undershirts. They are snug fitting and give a mild compression feeling that some kids really like and benefit from. They are pricey - we've never tried them - but you might get one pair to try and then shop around to see if you can find something similar??

Dec 03, 2010
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Our story
by: Anonymous

I had the same issues with my DD a that age- getting dressed. After diagnosis, we found out that her stomach area is very, very sensitive. She would not wear underwear unless it came over her stomach, and pulled up until it sat all most under her breast. We tried every type and size of underwear- until we found leotards. She wears these under her clothes- I know it sounds weird but the leotard spreads the sensation and now she can wear "comfy" pants - somewhat comfortably. She has learned to quickly take the leotard off for bathroom breaks.

Does your child tell you why the underwear is comfortable and where it doesn't fit "right"? Maybe you can identify the area and then work around it.

We also allowed extra time to get dressed, watched the changes in the weather, used habitation, allowed my DD to watch TV and be distracted when dressing, and made a reward chart for wearing "new" or different clothes. I can not tell you how many times these rewards to used to buy her a reward that she really, really, wanted- something like an American Girl Doll...ouch expensive but in the end worked out. Also females get self esteem from males in childhood, have your husband highly praise your DD when she has put underwear and different clothes.

I also let my DD change into something that distresses her when she comes home from school- this often means putting on her nightgown, or taking off her pants and just being in her top and leotard. Most days, she comes in the door and starts to strip down to her comfort zone.

We are lucky, at our school, they know about SPD and work with us. But our problem was our family, they still believe that SPD is a behavioral problem. I have to remind them that my DD has SPD and that effects many things.

Dec 01, 2010
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my daughter is the same
by: tina

Hiya, i know exactly how you are feeling, my daughter is 8 years old and she has hated clothes since she was 3 years old, it all came about when she had really bad chicken pocks, and a chest infection, she never had any clothes on for 3 weeks as she was smothered with pocks, this is when i cvan pin point when it all started. every single day is a struggle like yourself, we sit down every morning and we start with the same item of clothing every day, first pants then socks then trousers then vest then top, jumper, she is going through what i call a bette stage, she can get her pants just about on with her trousers, this could take 30 mins, we then try with the vest, she stretches it so it would fit me, the same with the pants. we try with the vest but this will get half way then chucked as she doesnt like it, too hard to do it too hard to feel, she asks for help, then she will take away from me, then 5 min later ask for help again, this goes on until we just have to go otherwise i would be sat there for hours, we get to school her freezing as nothing under her coat, we now go to the toilets at school and get her sorted, this happens every single day.

i have had many meetings with her school, and i am so lucky that they are so supportive, but it does make you feel your a failure as another, your not coping, your walking down the street with clothes in your hand, people staring at you, these now go in a carrier bag! At her worst stage the car has been shaking as we drove her screaming her head off, shoes being thrown at my head as they dont feel right. At weekends she wears one pair of trousers and one top, these are her favorite but they can still take an hour or more to put on, she will not wear a coat, and the weather is freezing here, just starting to snow, she totally refuses to wear pants at weekends, so when monday morning comes its a nightmare all over again, i have been off work for 6 months with stress anxiety, sweating, and depression.

I am about to lose my job, i have been fighting for years for someone to assess her, its only this year in September i found out about sensory, we are on the list to see a peadiatrician but this will not be until new year, have waited 6 months so far. I have know exactly how you feel every morning, sometimes i just do not want to wake up and go through the whole process again, but i have no choice she is my daughter and i am a single parent, which makes it hard to as have no one to lean on in the mornings, when it just gets to much!!

Nov 30, 2010
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Some Suggestions
by: Anonymous

My daughter has similar issues and I know how frustrating it can be! So sorry to hear you are going through this. Here are a few suggestions:

1) Have you tried purchasing a copy of a book (for the teacher's reference) that explains SPD clearly - like "The Out-of-Sync Child" or "Raising a Sensory Smart Child"? Or even putting together a page or two of the best quotes from the research you've done including the links/citations so they can look into it further. Or perhaps giving them a copy of the OT's assessment/write up so they can see something "official."

2) Although the problem IS a physical one, we've realized it's important to still have behavioral expectations. In our experience, dealing with these issues has to be a combination of love/understanding/accommodating, therapy, teaching/training, AND discipline.

3) On another note, we've seen incredible changes in our daughter after going gluten-free. It's definitely worth a try since their symptoms sound so similar.

Best of luck to you as you care for you daughter and advocate for her in school!

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