We are constantly having a battle with getting to church or school on time since Jared constantly hates his shoes and jeans. He likes them in the beginning and then hates them within a few days. Some of it is his want of control, but I am somewhat thinking that because of his MD, he is more sensitive to the way the pants or the shoes feel on his body. Is anyone having a similar situation or have dealt with this and been able to find a better way to deal with this issue? Jared is still quite ambulatory and capable of getting himself dressed. Anyway, are there jeans and shoes out there that feel more comfortable? From what I have been reading in other discussions, shoes should be wide and flexible and lightweight. Please help us retain our sanity and do away with these terrible battles. Thank you for your help.

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Holly,
I have the same problem with my son. If his blanket isn't just so he can't go to sleep. I get upset because he is almost 10 and I feel like he just wants to be babied. which is ok some of the time. But I want him to feel independent. This morning he wanted me to put on his coat like every morning and I asked who puts your coat on at school? He replied "I do" So sometimes it may just be wanting the attention. I feel like my son gets a little ocd (obsessive compulsive) about how his room is kept. Nothing can be left out. But maybe he feels like he can control something other than his body. I hope this helped! Sometimes I can start rambling on after my morning coffee!
Dina
My goodness...I've just finished reading all the replies on this site and my Christopher is no different. Sometimes I call him the "Princess and the Pea" because he can feel the smallest wrinkle in his socks or clothes. For years we've been ordering his pants and shorts from Easy Access Clothing. We've been very happy with them. They are absolutely the only pants and shorts Christopher will wear. This is not an advertisement for them...I don't work for the company! The pants are made higher in the back for wheelchair sitting and they are very lightweight, which is nice here in Florida.
Our son has had severe SID (or SPD now) since birth, and it has posed so many challenges. Not only has he lived forever in sweat pants and cotton shorts made from t-shirt material, but he used to scream like you were skinning him if you brushed his teeth, or cut his hair or toenails.

The other thing Mitch has is an extreme sense of smell...... he can come home after school and know if his grandma has been over as he can "smell" her. For some of our friends this wouldn't be a challenge as some of them to like to marinade in perfume, however all of our family keep perfume and after shaves to a minimum as we know it sets Mitch off.

He also used to like banging his head (although he still does it if he gets upset) and when he was a baby he would stare at light bulbs (which really freaked me out, as it really made my eyes hurt to try and do it)

He is a typical Princess and the Pea, and whilst most days its bearable, sometimes I get so frustrated when it takes 10 minutes to get a pair of socks on, because the "crimples" don't feel right. We now use the diabetic loose top socks, which is helping, and as Mitch is nonambulant we just don't put shoes on (he also has pes cavus which doesn't help the shoe situation at all)

He has an incredible long term memory, but very restricted short term memory, but a perfectly normal IQ. He is OCD about a lot of things, including reminding you how to do things or when things need to be done (which drives me insane some days).

The weird thing is, the smells, textures and diet "anomalies" (he can pick "his brand" of juice by smell and refuses to drink any others) have become so much a part of our life that I couldn't imagine going to the supermarket and having a choice of what flavour (or brand) of juice to buy..... I can almost pick suitable clothes by just looking down an aisle of clothing, and whilst it is frustrating, I understand that clothing will always need to be adjusted, and since the VPap became part of the night-time routine I now just "budget" the 15 minutes it takes to get Mitch in bed and comfortable....

I have started a new group called tactile sensitivity, partly because I think it would be great for us to have an area where we can share issues unique to our boys and give each other tips and strategies, and also because I really would love to see how many families are dealing with this, as our physio seems convinced our son is the exception not the rule.......

Hope you all join as I'm sure there will be some wonderful advice on offer for our boys

Jules
I joined. Thanks, Julie.

Julie Gilmore said:
Our son has had severe SID (or SPD now) since birth, and it has posed so many challenges. Not only has he lived forever in sweat pants and cotton shorts made from t-shirt material, but he used to scream like you were skinning him if you brushed his teeth, or cut his hair or toenails.

The other thing Mitch has is an extreme sense of smell...... he can come home after school and know if his grandma has been over as he can "smell" her. For some of our friends this wouldn't be a challenge as some of them to like to marinade in perfume, however all of our family keep perfume and after shaves to a minimum as we know it sets Mitch off.

He also used to like banging his head (although he still does it if he gets upset) and when he was a baby he would stare at light bulbs (which really freaked me out, as it really made my eyes hurt to try and do it)

He is a typical Princess and the Pea, and whilst most days its bearable, sometimes I get so frustrated when it takes 10 minutes to get a pair of socks on, because the "crimples" don't feel right. We now use the diabetic loose top socks, which is helping, and as Mitch is nonambulant we just don't put shoes on (he also has pes cavus which doesn't help the shoe situation at all)

He has an incredible long term memory, but very restricted short term memory, but a perfectly normal IQ. He is OCD about a lot of things, including reminding you how to do things or when things need to be done (which drives me insane some days).

The weird thing is, the smells, textures and diet "anomalies" (he can pick "his brand" of juice by smell and refuses to drink any others) have become so much a part of our life that I couldn't imagine going to the supermarket and having a choice of what flavour (or brand) of juice to buy..... I can almost pick suitable clothes by just looking down an aisle of clothing, and whilst it is frustrating, I understand that clothing will always need to be adjusted, and since the VPap became part of the night-time routine I now just "budget" the 15 minutes it takes to get Mitch in bed and comfortable....

I have started a new group called tactile sensitivity, partly because I think it would be great for us to have an area where we can share issues unique to our boys and give each other tips and strategies, and also because I really would love to see how many families are dealing with this, as our physio seems convinced our son is the exception not the rule.......

Hope you all join as I'm sure there will be some wonderful advice on offer for our boys

Jules
I can so relate to the OCD thing and the reminding you how to do something! Everytime I go to lift him off of the toilet, he says, "Are you sure you can do it?" At dinner time, he needs separate little bowls for any type of sauce or dressing because he just can't stand it if some of the dressing gets on something else that it wasn't intended for! I remember when he was just a baby, sitting in his high chair, fussing because there was 1 crumb on his shirt. Ah, yes, the patience can run thin on some days. Now that he is older, he is getting better about recognizing it and we kind of laugh about it. We love the television show "Monk" and we joke that at least he's not quite that bad! I'm going to check out the group you started, Julie. Thanks.
one word on the shoe issue, Merrell! they make a shoe that is slip on and it is the only shoe my 10 year old with duchenne can wear, he is a toe walker, and this shoe doesn't cause discomfort for him. he also refuses socks, baby powder helps, we just dont force the issue. he also loves wind pants with a side zipper, they are light and easy to move in. pick your battles... clothes are a small isuue!
I do have to adjust the pillows and blanket for Austin also. It is a pain, but, once you learn exactly how they like it, it's not so bad. Austin likes to lay half sitting up in bed, so, he has like 3 pillows in his bed, they cannot be upside down, or backwards. His blanket cannot be hanging off the bed, or messed up in any way. We have used the Sketchers Z straps for a while now. Austin puts his socks on, I fix them, then he puts his shoes on, and I fix them again. Then we're usually ready to go. I've also finally given in and Austin no longer wears a heavy coat. I found him a thick insulated zip up hoodie at old navy, so, on cold days thats what he wears. I've found that the big bulky heavy coats make it alot harder for him to walk or move around at all. I also have to help him adjust his jacket exactly before we can leave the house, and make sure whatever he's taking with us is in just the right place and within his reach in the van.
I sometimes think it's not just sensory but more Anal Retentive. Austin has been like this with various things throughout his life. He once went through a phase when he refused to take his shoes off. I had to take them off of him after he was asleep... lol. It worked....

Holly Kimball said:
I can't believe how many others have the sensory problem. My son Tyler not only has to have his shirts with no tags and his socks and underware just the way he likes, he also has a sensory problems with his pillow and blankets. If his pillow is turned the wrong way, or his blanket isn't laying on him just right when he's getting ready to go to bed it's a big battle every night. I adjust the blanket at least 3 or 4 times until it's just perfect for him, then he'll go right to sleep. Seams his blanket has to lay on him just right, and can have no bunches in it at all, just like the "socks" before he will go to sleep. I do pretty good with adjusting his blanket for him each night so he can get a good nights sleep, but it really drives me crazy when I have two other children to tuck in and get ready for bed too. Does any one else go through this same thing?
Easy Access clothing has made dressing and pants in particular, easier for my son.
Ginny
My son always hated the feel of jeans, he lived in Cargo Pants with elastic waist. Even the feel of certain materials
bothered him. I spent a fortune on clothes he would'nt wear. Shoes were always an issue.
His favourite for the last couple of years are the Nike Free. They are super light and comfortable. Even socks were
an issue. I now buy the Nike white socks with the short top on them.

Hope this helps
Cindy

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