Who is the true Expert?

Parents often complain about how everyone has “advice” for them on how to raise their children. They are often very protective of their parenting and take offense to suggestions. This is especially the case when it comes from someone who has never had their own children.

Things get a little tricky in the special needs world.

When Z came along, I felt the same way as everyone else. I was the parent, I knew what I was doing. And if I didn’t, I would figure out what was best for my family. Thank you but no thank you.

Probably the hardest part of the entire journey was right before the diagnosis. We knew something was different but weren’t quite ready to hear. I remember a stranger at an ATM simply asking me if Z had autism (no judgment or advice given) and I pretty much said no and left without using the ATM. I wasn’t ready. We had always sort of made an excuse for all of his differences. We figured he would “grow out of it”.

Once we received the diagnosis and accepted where we were at, we found ourselves bombarded by advice on what we needed to do as parents. We were told if we didn’t do certain things then he would not advance in life. We were told we had to “give our all” for him to have a good life.

If someone had said that to me when Z was a baby, I would have rolled my eyes like “yeah, I know, that’s what I’m doing.” I knew what was right for my baby, we had made it that far on our own. Who are these people to know what was good for my family?

Once we became special needs parents, though, it felt like we gave up this right to simply roll our eyes. We had to talk about everything, share everything. The amount of questionnaires I have completed that ask about pre-birth, during birth, and post-birth is alarming. I had to share intimate details and question whether my body, my age, my lifestyle was what caused these issues for my son.

You see, there is no “cause” of autism. It could honestly be anything at this point but always seems to point to the parents. We caused this one way or another and that is a very sobering thought. These days, they are “finding” autism as early as 2 years old. Brand new parents are trying to navigate being a new parent, having a new baby, having a diagnosis, having guilt..

So you finally get yourself through the initial loss of control. You are okay with not rolling your eyes. Then you start therapy services.

For us, that meant ABA (behavioral) services. The entire point of behavioral therapy is to determine the antecedent to the behavior and figure out how to address that to avoid the behavior in the future. We would tell the therapist about an issue we were having and the first question was always “Why do you think that happened? What was happening right before the meltdown? What were you doing (or not doing)?”

So you start questioning everything. Every move you made that day, every food you served, every clothing you bought, every toy you chose, when they showered, slept, ate. Every second of your day is under a microscope for anyone to review.

That proud, confidant parent you once were is gone. Instead, you are worried about choices you make. You are asking others what you should do. You are letting “experts” tell you how to parent. And remember what I said earlier about how advice is more offensive from a non-parent? Guess what, most of these “experts” are non-parents or they only have neuro-typical children. Most are much younger than you, barely having experienced life at all.

And yet, in the beginning you welcome all of this. You are so lost in what is going on, what your life has become. You are grasping for any lifeline. You explain everything about your life to a stranger with the hope they have the magic answer for you.

And some do. Let me make sure I am clear on that. We have had amazing people in our lives that have helped tremendously. Early on, most of the advice was extremely necessary. It was welcome.

Then we gained a bit of our own experience. We had years of trial and error with our son. The “advice” started sounding cookie cutter and not geared to our son’s specific level. And we stopped wanting to share so much, stopped wanting to hear so much. We just wanted to figure things out with our son.

But now we are seen as being “difficult” by agencies and schools. We have demands of our own, we ask questions of our own. Rather than pointing at our own actions, we point to things the agency or school did as the possible antecedent. And that is just not accepted in our society.

You see, we are not often seen as the “experts”. Even though we have lived 24/7 for many years with our child, we are not the expert.

Our child has not progressed? It must be that we did not catch this early enough. We didn’t do enough services. We haven’t attended enough seminars. Haven’t ready enough books. We haven’t worked hard enough, haven’t given up enough of our own life. We must be selfish parents. We are not giving him his “best life”.

And just like that, you find yourself right back in the beginning with all of those new parents. Getting advice from every angle, being pushed to do the “right parenting”. We are constantly under a microscope.

The weight of oversight is sometimes too much. There are days I shut down. I can’t take one more suggestion, one more “helpful tip”. I am asked “why?” and I simply say “I don’t know”. I need the services, but relish the days when they get cancelled. I let Z control the day instead of using everything as a “learning” opportunity. The stims are welcoming rather than concerning. He gets to use his iPad all day. I look at people with a simple shrug and say “your guess is as good as mine”.

But we survive the day. We get up again to do everything all over again. Maybe a little bit better, maybe not. Maybe with more openness to instructions, maybe even more shut down. And in the end, you realize that you do have the control. Even when listening to everyone else. Even when having to explain your entire life. Even with strangers questioning your every move. We are in control. We decide what is best for our family, for our son. And it will be like that for all of our lives. Everyone else will come and go, but we will always be here.

And while we may be the experts in the end, we do not know everything. There is always opportunity for improvement. Always a way to see things differently. The true expert is Z. We are all just here trying to learn from him and listen to him. And that will make us the better parents and give him the best life.

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