I have never know life with Mitchell to be without the challenges thrown up by this condition.

When he was younger I had one of the neighbours come and "talk" to me, as she was concerned that I was abusing my son, as she heard him screaming every morning and every evening. I physically had to show her how he reacted to having his hair and teeth brushed, or his toe nails cut before she understood that his "wiring was wrong" and that I wasn't a bad mother........

That coupled with jeans being ouchy, socks having crimples and anything other than cotton putting him into sensory overload made for interesting times when he was young, and I was learning.

We had one therapist suggest we start tactile desensitization... which involved a daily "rubbing" of different textiles. Starting with cotton and leading all the way up to sand paper..... it seemed brutal (we found out later it was heartbreaking to do) and for all the stress we gained no benefit.

The solution? We as parents adjusted. People were asked to not overload the perfume and aftershaves if they came to visit, we bought the foods (and brands) he would tolerate and avoided the others, we made sure his clothes were cotton and tried with all our might to not lose our temper if it took 15 minutes to get the crimples out of his socks.

So you can imagine my suprise when a therapist told us that there was nothing wrong with our son, he didn't need his clothing adjusted, giving in to his dietry demands was just weak parenting and that we were making a rod for our own back...... at a time when we had not had an unbroken nights sleep for nearly 8 years it was the last thing I needed to hear. (Mitch used to need to be repositioned up to 8 times a night once he became non ambulant, and even before that, if he was completely still for too long he would wake up, and need to be "patted" to get back to sleep)

The first time I met another parent with a son with similar issues, I felt like the world was tipping back the right way, and my sanity was being restored.

It took me a long time (and a lot of reading) to understand why Mitch is the way he is, and if I'm honest I can't even begin to imagine what life is like for him when things that feel so normal to us feel so wrong to him. I have days when I wish I could deal with one or the other (DMD or SID) as dealing with both is just so exhausting, but as the years go on and our routines become more and more embedded in our daily lives, I find these days are coming less often.

The weirdest thing is that for all his sensitivities, he is a little boy that NEEDS to be touched. If we are shopping he sits as close to me as he can, so his feet touch my legs. If I walk past him, he needs to be kissed and hugged (and who can resist that) but when this is happening 20-30 times a day it can really make getting anything else done difficult..........

So to all of you that live in this select group of DMD parents, I hope that the medical professionals have not tried to convince you that it is a result of bad parenting like the therapist did to us. The issues are real, the stresses are many, but together we can get through this and whatever else is thrown at us.

I look forward to hearing everyone elses experiences.....

Jules

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Replies to This Discussion

Wow Julie, you've really been through some rough times with Mitchell. Christopher has never been formally diagnosed with SID/SPD and has much milder reactions than what you describe with Mitchell. I guess he is just extra sensitive but not enough to be officially diagnosed with SID/SPD. When you talk about that therapist saying that you didn't need to accommodate his needs and that you were being a weak parent, my blood just boils. I know that sometimes, family members feel that way about Christopher. Especially his sisters. They are all in their 20's now, but they still sometimes don't get it. I guess it certainly looks like he is spoiled sometimes when I do special things, like put his salad dressing in a separate dish so it won't touch other foods, or adjust his socks...again....because he feels a bump. But they just don't buy that he truly feels things differently. It doesn't help that he is the only boy and the youngest of the 4 kids. Maybe someday they'll come around and realize that he just has differences that we need to work around and if that means a special bowl for his dressing..so what?!
I know what you mean about other people looking at you and thinking that you are "over mothering" your son, some of our friends think I am over compensating for the whole DMD thing.

I know a lot of people that serve tomato separate to a salad, as they don't like the way it makes the salad "soggy". I also know a lot of mums that like their labels to all point the same way in the pantry, and I will often giggle as they "straighten" up the jars if the kids have put the groceries away. The list is endless and I think truth be known all of us carry these little irks and quirks - it's what makes us unique, but usually people either don't notice or don't even know of them, as we are able to "put right" anything that is out of whack compared to the way we like it.

So for our boys, that have no dystrophin (which researchers are now finding may increase the occurence of things such as SPD, OCD, ADHD, Aspergers etc) they not only have the increased occurence of these irks and quirks, but they lack the ability to perform the tasks to rectify or satisfy these neural impulses.

I watched a show years ago on people with OCD, and they physically prevented them from being able to satisfy their rituals, whether it be handwashing, flicking the light switches, counting items etc, and they all reported that the one thing worse than OCD is the "torture" of not being able to do what they needed to restore "order" in their world.

I guess for our boys that is the same problem, only DMD not a group of medical researchers are preventing them from doing what needs to be done.

Medical science is coming along at a staggering rate, and I know in 5, 10, 20 years, the mysteries of the mind will slowly be unlocked, but until then I will keep adusting his socks and hugging him on demand - whatever it takes to make him feel safe and at ease with his life. He has enough on his plate, and I certainly don't want to add to it, by trying to make him "normal" and forcing him to live a life that makes him miserable mentally, physically and emotionally.

Other people can (and probably will) judge me, but I made a vow to be the best mum I could be, and if this is what it takes then so be it. I know a day will come when I can no longer look forward - I can only look back, and when that day comes I want the peace of mind that I did every thing I possibly could. So bring on the separate salad bowls, the adjusting of clothing, the 6 million ways to brush teeth or cut hair without making your child scream like they are being skinned alive - this is our journey too, and if these things keep the peace, then that should be all the justification we need. :-)

tracie said:
........But they just don't buy that he truly feels things differently. It doesn't help that he is the only boy and the youngest of the 4 kids. Maybe someday they'll come around and realize that he just has differences that we need to work around and if that means a special bowl for his dressing..so what?!
Julie,
Thanks for sharing that! You have just described our situation too. I understand everything you are saying. .

At times I am so glad that we live out in the country because of the screaming. Mostly it's Daniel but sometimes when I just can't take it any more, I am sorry to say it is me. It takes an enormous amount of patience to deal with this. I dread dressing my son to go any place. If it's not the socks it's almost always something else. The pants not fitting just right (have to be in just the right spot on his belly) or the shirt (can't be too long or too short). Always the shoes! They get taken on and off at least 10X until they "feel right". It extends beyond clothing as well. The spoon for his cereal gets a thourough inspection every morning and if it has even one detectable water spot on it than it's rejected. He will get another one and the inspection goes on until he finds just the right one. Everything has to be clean and germ free. Once we get in the car then it's the seatbelt. It ca't be too tight or too loose. Has to be in just the right spot across him. Before that though, his jacket has to be smoothed out behind his back. Can't stand any bumps or wrinkles in it. Once we get past all that it is pretty much smooth sailing and I heave a huge sigh of relieve! It is the same routine everyday.

Most don't get it. It can make an already stressful situation even more stressful. I get tired of trying to explain it. Your right in that people think you are just "giving in" and coddling your son - especially I guess given he has DMD. I have heard the poor parenting thing as well.

I am not against steroids, as they are the only thing that we have to help but once we started them this is when all this oversensitivity began to be noticable with my son. Still, we use them (at a minimal dosage) and I just try and deal with it the best I can.

I sought out a neuropsych by a pediatric psychologist as soon as I could get one for Daniel when he started kindergarten. I felt I needed ammunition. I would only have it done with someone that had evaluated a large DMD population so it was Cincinatti that I took Daniel too for that. I was so afraid for him to start school and that people would not understand him. I knew he would not adjust well to it. I was right. Teachers didn't know what to make of him. School was a nightmare! It can still be a challenge but he is adjusting better this year. The psychologist we saw was right on. She said his sensory issues were something we had to learn to adapt to. They were real and we were not "coddling" to him by trying to ease them. She said we were in danger of people not understanding him and thinking he was just a kid behaving badly. She was so right on. Her report was invaluable to us and helped a lot with the school.

Julie, my son is also the same way with craving the hugs and kisses - usually only from me though. He loves to be touched and massaged and have his back rubbed. He cannot get enough of it!! It is a bit odd given all the sensory issues but it is one quality I am so gald he possess's! These moments I treasure!! It so makes up for all the struggles with the dressing and his other little quircks throughout the day!

Karen



.
I hear what you are saying with the screaming (as a mum) Karen. There have been days when I just can't help it, and it all has to come out, and while I put it down to the frustration of not only living with this demon we call Duchenne, but the added stress of having sensory dysfunction thrown in for good measure, it still doesn't make me feel any better about it (or stop me beating myself up for being a bad mother).

I must say that as Mitch has gotten older these outbursts are coming less often, largely because I think we are now over all the major hurdles - we've had time to adjust to him not walking, we are used to feeding, dressing and toileting him because his arms don't want to comply anymore, and we are so used to seeing the vent that it no longer tears out another tiny piece of my heart out each night when I go check on him......

The SPD has also settled down. I can't say it has gone away, or even improved, but I think we as parents have become ingrained in the routine, and are now ultra efficient at preventing the problems, rather than having to deal with them. I have now been buying the same brands of cordial and cereal and musli bars and everything else that I know is "not negotiable" for nearly 12 years - so I can almost do my grocery shopping on autopilot. Family and close friends now also keep some of Mitchells "non negotiables" in their cupboard so I can stop in for a coffee without having to pack half the panty, which is really nice, as it gives us a sense of normality in such a crazy situation.

We still perservere with trying to introduce new foods, but we don't get stressed if it doesn't happen - lifes way to short for that. I am noticing with Mitch that his sense of smell is maturing as he grows (the same way our taste buds mature as we get older) so he is trying a few new things every now and then - last year he added roast potatoes to his list of will eats, and spent months saying he couldn't believe he has missed out on eating them for so long!

I agree that the biggest challenge when combining both situations is introducing (and living with the effects of) steroids. Our little boy went from an angel (albeit a very picky one), to a self mutilating monster literally over night. 3 days after starting pred, he was biting himself, banging his head on walls, pulling out his hair, and screaming almost non-stop. As parents we were devastated. Mitch had been diagnosed 10 weeks before and we were still trying to come to terms with it all. To then find out that we had to make a choice between the only drug that has found to be beneficial, and giving up the very essence of our son was hard. Luckily we found a mum that had the same problems and she told us to avoid the mould inhibitor (282). Once again almost overnight we got our little boy back.

Then the second steroid challenge began - the diet restrictions. How do you limit a childs intake to everything low cal, low salt, low fat, when they have already self regulated their diet down to half a page of "will eats"? How do you switch to salt free when everytime your son sniffs it (Mitch wont eat ANYTHING unless it passes the smell test...) he refuses to even put it to his lips because "it doesn't smell right - thats not MY (cereal)........" our solution, don't even try. Pick the battles you can win, and keep your sanity intact. As a result Mitch did gain weight on steroids, he also developed typical cushingoid and a buffalo hump, but he has now been off the steroids for 3 years, and his weight, and everything else is nearly back to "normal" - whatever that is in our house!

The whole sock issue is also eased (ironically) when the boys stop walking, as you do get to the point where you realise they don't need shoes and socks anymore, because they are not going to walk on anything that may damage their feet (which lets face it, is why we wear shoes)..... so on days when the socks aren't right, we have a few goes and if he still is not happy with them, we just call a barefoot day! For winter I invested in a really soft polarfleece blanket, and this winter I am going to make a custom one with a foot tuck - that way even on the coldest days, socks and shoes can be left behind if the crimples just wont come out...... I now cut the labels out of clothes the day I buy them, and if I see things on sale I will often buy not only the size he's in now, but a few of the larger sizes for next season (but I don't cut the tags out of them - it gets too confusing).

And as for us as parents? There is not a day goes by when I don't cast my eyes to the heavens and remind Him that we are going to have a "little chat" when I get up there (my husband laughs and says that will be the day Heaven experiences it's first tornado!) But I have come to accept that this is our fate, and we have to make the most of it. On days when the pressure builds and that valve blows, I once again look skyward and simply say "today is not a strong day, so how 'bout you cut me some slack?"

I have (finally) learnt that at the end of the day, the best thing we can do as parents is accept that we are not infallible, we will make mistakes, but as long as our boys are happy and healthy (well - as healthy as they can be given the circumstance) we can sleep easier knowing we have done a remarkable job, in exceptional circumstances.
Jules,
I have been searching and finally found what I was looking for - thank you!!!
My son was diagnosed with SID when he was 4 years old (autism was ruled out at the time because he didn't meet all the criterea), but then Aspergers a few months ago. He is almost 10 years old now. Genetic testing was done at the same time in regards to the Aspergers, and this is when they "accidently" found the BMD.
My question is, are you having trouble with your son's SID and need to have the constant touch and muscular dystrophy? We did go to occupatioanal therapy for a year and a half when he was four in regards of the sensory issues, but insurance wouldn't pay for any more sessions as they don't recognize SID as a real medical issue.
He has clothing issues, food issue in regards to texture, high pain tolerance and difficultly recognizing when he is too cold. He has a textured cushion he sits on at school, and wore a weighted vest from age 4 to 3rd grade. Last year the teacher said it was a distraction in class taking it on and off, so he stopped wearing it. (He goes to a private school, not public school).
My son NEEDS to have deep touch, not only hugs, heavy blankets, crashing into things, touch and feel everything! (like in the store), smell everything, and jumping. He has a small trampoline in the house and a large one outside. He has a NEED to jump and will go in the bathroom or his room and jump up and down on the floor if he can't use the trampoline. He just needs the extra sensory imput the jumping gives him. He becomes angry or agitated if we make him stop. It has an amazing way of calming him down. He will often do it in the morning before school or when we get home. It seems like he holds it all in until he can get home, and lets it loose on the trampoline.
The problem is I have been told and have read this is bad for BMD and muscle breakdown. I just don't know what to do about it. I have spoken to his physical therapist but haven't gotten any answers yet. I don't want him to damage his muscles, but I don't know how I can stop him from doing something he obviously needs to do.

Incidentally an excellent book on SID and ideas to try in general for at home and school is:
The Out of Sync Child by Carol Stock Kranowitz, M.A.
and also The Out of Sync Child Has Fun by the same author.
dear moms I just spent one hour with Caleb age ten screaming he wanted to watch a movie and he had not done his homework he missed three days last week for allergy tests as if his life is not tough enought out of 88 test he was allergtic to .all but 10 we go to see dr on thur so we can make a plan as to how to help him.I covered his bed and pillows but he has sinus so bad can not get it under control. he has been very sick. I know you will understand this my heart is crying. I do not know what to do he needs to get in his chair and stay there has trouble getting on the bus and Im so afraid he is going to fall hard. Mom I get on just fine. my older daus mom themselfs say just put in it and not give him a say. they just do not get that thats all he has control over and thats going fast other moms with older boys with dmd say he will know when its time but with his senery issus he will scream and another battle. thank you for hearing me do you have any idea that would help I guess me at this time again thank you Penny Hauer
Hi Penny,
my son is also allergic to many things - we tried a number of different medications and now he takes Zyrtec which works wonderfully. He used to get sinus infections constantly, but he hasn't had one now for about 2 years. We also covered his pillow and bedding etc with the special bedding to reduce allergies. I also take Zyrtec D for my allergies, and also haven't had an sinus infection since I started taking it. Doesn't work for everyone, but if you haven't tried it, I would ask your doctor about it.
Denise

Penny Hauer said:
dear moms I just spent one hour with Caleb age ten screaming he wanted to watch a movie and he had not done his homework he missed three days last week for allergy tests as if his life is not tough enought out of 88 test he was allergtic to .all but 10 we go to see dr on thur so we can make a plan as to how to help him.I covered his bed and pillows but he has sinus so bad can not get it under control. he has been very sick. I know you will understand this my heart is crying. I do not know what to do he needs to get in his chair and stay there has trouble getting on the bus and Im so afraid he is going to fall hard. Mom I get on just fine. my older daus mom themselfs say just put in it and not give him a say. they just do not get that thats all he has control over and thats going fast other moms with older boys with dmd say he will know when its time but with his senery issus he will scream and another battle. thank you for hearing me do you have any idea that would help I guess me at this time again thank you Penny Hauer

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