What I've learned (so far)

I have a friend whose kid got his diagnosis last week. This is for her, a partial and self-conscious list of things I’ve learned in the last two years about raising a special needs kid, with a nod to Kendy and Rebecca, who have been amazing teachers and friends.

What I’ve learned:

It is not the end of the world. It isn’t even a total disaster. Terminal cancer, losing your kid in a car wreck, that’s the worst case scenario.

My kid perceives the world differently than you and I do. You can look at that as a strength or a weakness, and the choice is yours. It doesn’t change your kid.

His brain isn’t broken, and I am not fixing him. His brain works in a different way, and I am helping him manage that.

If you are mourning the loss of the idea that your kid will be the homecoming king or head cheerleader, realize that those expectations are yours, and that even if you have a typically functioning kid, they may dye their hair black and become one of those Goth kids, with those bizarre ear holes and black lipstick and tell you, ever so politely, that homecoming kings are totally lame and they have to leave now because they are out of Marlboro Reds. There’s a guy who lives in my neighborhood who has tattoos on his face. He’s over eighteen, and there’s nothing that his parents can do about it. What I’m saying is that it’s all kind of a crapshoot, so don’t get too hung up on what you want your kid to be. Whatever your kid is, love that kid all the way.

I love my pediatrician, but she hasn’t helped me at all with Kai. She writes letters I ask her to write and gives me prescriptions I ask for. Ask questions of your friends, your therapists, do your own research. Not to go all rogue on you, but the mainstream medical community will tell you that there is no cure, and a lot of ASD families will tell you that that’s not true. By all means, ask your doctor all the questions you want. Also ask the lady sitting next to you at your OT appointment. The most helpful things I’ve learned, I’ve learned from other moms.

Just because someone’s name is on the door doesn’t mean they’re right.

You will be told “no” a lot—by your insurance provider and the school system, among others. Reframe the word as a challenge.

Know your rights.

Your insurance company will make you cry. This is their job as handpuppets of the devil. Take copious notes, record conversations, ask for certificates of coverage, research the laws in yours state, and keep at them. Eventually, they’ll give you some of what you want just to make you go away.

There are people out there who say that they are okay with your special needs kid being in their yoga class, but are not really okay with it because they don’t know what to do with a kid that doesn’t hang on their every word. These are not bad people, but make sure you get your money refunded, and make sure your kid knows that you think that that yoga lady was a not a good teacher, and you’re glad you don’t have to go back there. Know additionally that that yoga teacher’s three kids will probably turn Goth and tattoo their faces just to get on their prissy mother’s nerves, and that you will try not to show any glee. Okay, that’s a lie. I will have an amount of visible glee.

My job is to help him be aware of what he needs so that he can manage those needs independent of me.

Additionally my job is to help him harness his strengths, whatever those are, to be as independent and as successful and as happy as he can be.

One more thing I have to do is help him function in a world operates in a way that’s not always compatible with Kai’s way, and this is actually the hardest part of all of it.

Take good care of yourself or you’ll never manage to get through the day. This includes showing yourself some compassion when you screw up or lose patience or burst into tears.

We have as much joy in our family as anyone else, typically functioning or not. We may even have more, because we appreciate victories we have to fight so hard for.

When you are tempted to look around and wonder, “Why me,” remember that the Universe gives you the kid you can handle.

Everyone has to take their own journey.

Comments

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You said everything so perfectly!

Posted by: Ecmaughan | 07/07/2011 at 10:59 AM

This brought me to tears because there was no better... or may I should say worse day... than today for me to read this. I was told that my son did not qualify for special classes and I know in a year when he starts in Kindergarten all heck is going to break loose. There have been nothing but doctors appointments, we are praying and hoping for a tenant to come into our lives to take over our lease so we can get into a home that is a safer environment for our son, and it goes on and on. Thank you so much for this!!!! I will be reading this over and over again for strength, humor, and to know that I am not alone!!! I wish I could hug you right now!!!! THANK YOU!!!!

Posted by: Christy Fall | 07/07/2011 at 09:04 PM