How do you know when you’ve done enough?

Last week I was at the National Autism Conference, and I heard a great speaker who is really well known for her expertise in Verbal Behavior and ABA. She has two kids on the spectrum, and she got quite wistful when speaking about the older one. The younger one, who was born several years after her brother, received her diagnosis sooner, and was in more effective treatment at an earlier age. The progress they have both made on their VBMapps was remarkable. When we know better, we do better. It’s hard not to get wrapped up in the “If only I had known this sooner, I would have….” Yes, you would have, I would have, we all would have. But we didn’t know.

The other day I wrote a post on acceptance vs. settling, in regards to your child and their diagnosis. As I was putting together that post, I had contacted a friend for her opinion. She is a fantastic mother, one that I admire greatly. She and I have had similar discussions before, as far as acceptance and what we do for our children and she is one who really shares my point of view.

Here are some examples of what we’ve discussed and where we struggle–

Let’s say, you see in the media, some human interest feel good story about some child with disabilities. Parents get the diagnosis and prognosis from doctors. But they exclaim “No! Not my child! You can’t put limits on what my kid can do!”

Then they proceed to enroll said child in every treatment, therapy, study and voodoo session they can find. And of course, against all odds and every doctor’s expectations, the child performs at a much higher skill level than anyone would have ever thought. And the parents sit there, on your morning TV show, beaming with a “We just knew he could do it! We never stopped believing in him!”

As if. As if, the reason my son performs many skills at levels below his calendar age, is because I don’t believe in him. Or at least, I don’t believe in him enough. As if “believing in him” is all it took. Ok, now fine. If you want to go ahead and leave me a comment and tell me I’m being too sensitive as far as those types of stories being shown, do so. You’re entitled to your opinion.

Let’s change the story a bit. Make it more medical. Now, on your morning TV, sits a cancer patient in remission. Was given only a miniscule percentage chance of surviving, but here they are, X number of years later, and doing great! Isn’t that fantastic? And they interview the family and/or person and they talk about their “great will to survive” and I just “wasn’t going to give up” and stuff like that.

Because, I guess, all the other people who die from cancer, they just didn’t want it bad enough. Don’t get me wrong, in my ideal world, no one would die from cancer. And I’m happy that these people are doing well, really I am. (And for what it’s worth, I have talked with friends who have lost loved ones to cancer, about this line of thinking and they agree with me and usually dislike seeing stories like that.) I just think that more credit needs to be given to genetics, timing and medicine.

My friend said to me: “I’m reading a book right now by a mom whose son has CP and is visually impaired. She’s told when he’s born that he won’t talk, see, walk, etc and she is angry – they can’t tell her what her son can do! So she fights. She does all these crazy (and I mean crazy) therapies, she gets crystals, she sets her son in front of 240 watt light bulbs for hours every day. She works her ass off doing things that I honestly think sound like a waste of time… but in the end he can walk, he can talk, and he can see (though he still has a hard time with all three). And all I can think now is, did I not work hard enough? Did I “accept” my son’s limitations and in the end let him down. I totally see the pull between accepting and settling. Her story is not my story – and it’s quite possible her son would have turned out this way without all the crystals and patterned massages.”

Add to that, just in this week’s People, there was a story in it about kids with autism. They’re going through some revolutionary program in the Midwest and seeing significant, documented results. I immediately flipped through the magazine to see if I could sign up. Seriously. Me & thousands of other parents probably had the same reaction. (psst-don’t bother looking, they’re not taking applicants!)

No matter how much you are doing, it’s very hard to feel like you are doing enough; especially when you see parents doing more than what you’re doing and they are getting (perceived) better results.

The public likes these stories and they get great ratings. They give people hope. We don’t like to see people with disabilities, it makes us uncomfortable. We’re much more comfortable seeing them succeed and be “normal.” We don’t want to see the kid in the grocery store grunting and flapping his arms, we want to see Temple Grandin.

But for every one child who exceeds all expectations, there are hundreds that perform at exactly the levels that specialists predicted. Or lower than predicted. It does not mean that we have settled, it does not mean that we haven’t done enough. Heck, really, if you look at it mathematically, a small percentage will always perform better than the norm, a small percentage will perform worse. And most will fall at the norm, it’s why it’s called the norm.

All we can do is constantly re-evaluate and set our course. Some things that I take into consideration:

1. I heard a great phrase at the conference last week–In deciding what to do, follow the evidence! It must be a evidence-based therapy with documented results. If not, then it must be completely harmless. For example, I don’t think that rubbing crystal rocks on my son’s body would harm him. I wouldn’t do it, as I do think it’s a waste of time and money, but at least it wouldn’t harm the child. I will not try any wonky supplements, medications or diets that are not documented to have significance and without harm.

2. If it’s not evidence-based, and not going to harm my child, it must not harm my family unit. By that, I mean that time and money are a factor. I will not bankrupt my family either in money or time/love to try unproven treatments.

3. It must not interfere with us having some semblance of a normal life. My son, who is only four, goes to school four days a week, year round. He does additional therapies some days, plus he has other appointments with doctors and stuff like that. On top of that, I want us to live a normal life. Go out for pizza, take the dogs to the park, go for a swim or go fishing. I believe these things are equally as important to his well being.

We should always be doing research and reading and networking with other parents and therapists. We need to keep current on the latest and greatest that is out there. No one is going to do it for you–or for your kid. You have to do it. But evaluate each new option carefully. Get second and third opinions on it. Look at your child’s progress, the stage they are at in their development and whether or not they need a new approach.

But most of all, we’ve got to stop comparing our kids to other kids, and our therapies to other therapies. I don’t beat myself up over my 2-year-old not being able to speak as well as his other 2-year-old friends, and get him enrolled in all kinds of crazy crap to try to fix it. So why am I beating myself up over some kids with autism in the Midwest, whom I’ve never met, have no idea what their formal diagnoses are or their performance levels?

As the saying goes, “When you know better, you do better.” You can only do the best you can with what you know.

If we can end each day, knowing that we did the best we could with what we had, then we’ve done enough.