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.....