You will be tired.
Raising kids is hard. Raising special needs kids is hard in different and unexpected ways. Yes, you will be tired because you don’t get enough sleep (who isn’t?!). But you will also be tired of constantly being an advocate, of changing diapers way past potty-training age, of carrying around a non-mobile child, of doling out of medicines, of dealing with the questions, of scheduling doctor appointments. . . I really could go on for a while, but you get the point. Try to find that time for yourself. When I feel like I’ve had enough, I spend an hour browsing in TJ Maxx, Pier One, and Ulta.
You will be jealous.
There will be a day when you look at another child and wish your sweet little guy wasn’t disabled. There will be a day when another mom complains about how horrible it is for their kid to have strep throat and you will long for a life where that was your biggest worry. It is okay. Don’t feel bad for having these feelings. The grass is always greener, right? None of this means you don’t love your kid just the way he is; it just means you are recognizing how unusual your home life is.
You will feel alone.
Where are all the special needs parents? My guess – they are all at home because they are tired. Sometimes raising a special needs kid feels like those early months with a new baby when leaving the house is almost a burden, when it is just so much easier to sit around and cuddle. Fight past that urge. Find a way to get your family out of the house. Yes, you will have to plan and probably bring way too much stuff. Yes, you may need to go at off-hour times when things aren’t as crowded. But just do it. The longer you wait, the harder it will be. Check for special needs support groups or meet-ups in your area. Get connected with advocacy groups. There are others out there, I promise.
You will feel strong.
There is nothing that makes me feel stronger than taking an active role in the little man’s medical care. Telling the doctors and therapists what is best for him and having them work around my expectations. Getting rid of someone who is not a good part of the medical team. Confronting your challenges head on – whatever they may be – can make you feel like a super hero.
You will celebrate everything.
When the little man pronounces a word particularly well (usually “yeah” or “bye” as those are his two best) the house erupts in celebration. It is just exciting. When you ask you four-year-old if daddy hurt his head and he responds by grabbing his head and saying “uh-oh,” you will call the grandparents and post it on facebook. [Yes, that might be an actual example.] The little things mean everything when you are dealing with development delays. Don’t feel bad to celebrate.
You will view everything through a therapy-lens.
One day the little man was obsessed with trying to take a bandaid off of his leg and put it back on. My initial though? “Well, at least he is practicing his fine motor skills.” This is pretty much an everyday occurrence. New toy? – what skills can that improve? Playing with the dog? – is he stretching new muscles? Reading with his sister? – what book contains words he is struggling with?
You will be on a never-ending quest to find toys that fit your child’s development level and age.
When your child’s development starts to fall behind, you will find yourself caught in the trap of toys designed for younger children fitting better with his development stage. But damn it, there just comes a point where you don’t want to buy primary-colored baby toys for your toddler. Be on the lookout for older toys you can modify. I personally love B Toys; their unconventional color scheme makes them appear a little less age-specific. Dig deep on Amazon and you will start finding more appealing toys. And don’t forget to read special needs blogs for recommendations. Love That Max has some great posts with suggestions for lots of ages and stages. When all else fails, make your own!