I may not be Phil’s parent, but I am also not blind. I see my mom and dad struggle and see their day-to-day exhaustion. Simple things, things most people (and parents) wouldn’t think twice about are a constant fight for a special needs parent.
For instance: Changing their clothes (undergarments more specifically) on a daily basis. I understand that practically all children have a favorite shirt or pair of socks or whatever, but with a special needs child it’s a whole other situation. Sometimes there’s screaming, other times there’s crying, but mostly there’s just resistance. Phil, and probably many others, like what they like. They have super sensitive sensory systems (wahoo say that 5 times fast!) so many of their clothes and things are a big deal. Just recently he decided on his own accord, to throw out all of his old worn and literally torn undergarments, and it was a call for a party in our household! Later that week, he had to wear khaki pants for his work program at school . . . and he LOVED them! After some discussion, he realized he wanted to wear them daily.
October was a good month for us.
They have the same issues with food. A lot of the time, it doesn’t have to do with what the food tastes like, but what it feels like: in their mouth, in their hands, sometimes how it smells and looks. Many times, going out to dinner is a challenge. Philip isn’t as sever as some other developmentally disabled peoples, so he does not have a wheelchair, or feeding tubes, and he can walk and communicate (although it takes a while to understand if you’re not used to it). But that doesn’t mean there aren’t other challenges. Sometimes he will say inappropriate things to the waitress (whether it be obscene flirting, or calling her a bad name), or he will order his meal–which is ALWAYS chicken tenders, french fries and a Coke– and he won’t touch it. Sometimes he gets mad for seemingly no reason at all. These issues, along with others, make every experience a true experience.
As I’m sure most of you know, your diet effects every part of you. That’s why feeding a special needs person is one of the biggest struggles with daily living. Of course we want them to get all the nutrients they need to be as healthy as possible, but sometimes you just take what you can get. Phil’s only vegetable is raw carrots and that is a blessing! However, some kids are more tolerant with their diets than others. I have a friend with some Autistic buddies, and she was telling me that a gluten free diet can help people on the spectrum.
If you want to learn more about how to make healthier, farm fresh meals for your special needs child (or if you want them for yourself) then check out her blog!