When my boys were diagnosed with autism (and a few other neurological impairments), I didn't have the same reaction as most parents I knew. They were depressed, angry, and mourning. Me? I basically said a big, fat, "I TOLD YOU SO! LALALALA!"
Sure, I cried for about five minutes but mostly I wanted to get busy finding ways to help our sons. The one thing I craved, however, was another parent who had "been there, done that." Even though I have a degree in special education and have worked with children with autism and various other disabilities, this was a whole different ball game. Parenting manuals? What to expect at Month 94? USELESS. I've learned quite a bit since then. I've also royally screwed up, but it's all good since they've grown, gained weight, and no one's called CPS. Yet. And since I have a tendency to over-share (you're welcome!), here's my best advice on how to cope:
- Read and learn everything you can about their special needs. There's this great new invention called The Internets. Use it. And libraries and bookstores, too! It's amazing, books everywhere! I know, right?
- Take everything with a grain of salt. You will read metric tons of information and it will be overwhelming at first. EVERYONE will have an opinion.You'll also read conflicting information and hear various viewpoints on what is best for your child. Which leads me to ...
- You are your child's best advocate. In other words, you are the one that has to make all of the decisions. Trust your instincts and become an expert on your child. Autism is a very political world, yo, and I suspect the same among other groups of special needs parents. Do what is best for YOUR family, despite what treatment your neighbor's best friend's cousin's former roommate cured their child with.
- Beware of snake oil salesmen. There are people out there that prey on the hopes and hearts of hurting parents. If something sounds too good to be true, it probably is. If it costs thousands and thousands of dollars, do tons of research before trying XYZ therapy. Because we spent thousands on XYZ therapy and I wished I did more research, mmkay?
- Start taking better care of yourself. You are NOT going to be an effective parent of a disabled child if you put yourself last. Yes, they have needs. But if you consistently miss that appointment/skip that nap/cancel that massage, you will begin to resent your life. Find time for YOU and make it a priority. A happy parent takes much better care of his/her children than an exhausted, resentful one. Just sayin'.
- You do not have to tell everyone on the planet that your child is disabled. Quite frankly, it's none of their freaking business. I went through a period when I felt I needed to tell everyone from the grocery store clerk to the mailman that my boys were different. It is NOT abso-smurfly necessary to disclose that information unless there is a situation that warrants it. Besides, if they had two brain cells and they watched long enough, they'd probably figure it out on their own anyway. I mean, HELLO! McFLY!
- It takes a village to raise a child with special needs. YOU NEED HELP. You cannot do this alone. If folks offer help, for the love of all that's good and holy, TAKE IT! Join parent groups, find message boards on the Internet, do whatever you have to do to find support and encouragement. If you can enlist the help of a neighborhood teenager to help after school or rely on friends and family members, please do. It's great for your sanity. Or what's left of it.
- Don't let their disability consume you. I know parents who completely throw themselves into Autism World, and that's okay. For them. While I'm involved to a point, I make sure I have other interests and activities. I NEED to have outside interests because I NEED to have a break from what goes on in that part of my life. If you don't have outside interests, you will suffer burnout. It isn't pretty. Been there, done that, bought the t-shirt.
- Do not treat your child differently than you'd treat a "normal" child. They don't need to be babied and they don't need pity. They need discipline, boundaries, and routines just like every other child. Presume intelligence even if you don't always know what your child understands.They may surprise you someday and figure out where your secret chocolate stash is and all this time you thought they weren't watching. AS IF!
- Focus on the child, not their disabilities. Remember your child is first and foremost a child. They are NOT their diagnosis.They are children who need your love and support. Be there for them. Love them unconditionally. They will teach you more than you could possibly know.
Photo via Marj Hatzell