Things We Don’t Want to Know

Most biological parents have a comfortable sureness that they know their child. Most adoptive parents also are sure they know their children. Then there are adoptive parents of special needs kids. They, too, are reasonably sure, after a couple of years of living with them, that they have a large amount critical knowledge on their kids. Most of the time, all these parents are right.  Sometimes, though, the outside world gives us a piece of information that blindsides us. Biological or adoptive, someone says something to us that does not fit into how we see our child. Denial is our instinctive reaction. We know our kids! We would have noticed.

The first thing that a parent may notice is that in the past, people or professionals have said stuff to us about our kid that it didn’t fit the kid we knew, we either laughed, got annoyed, or felt attacked. After it ate at us for a while, it went, or mostly went, away.  This time, someone, a professional, school personal, or someone you are close to, says something or suggests something that you have never given thought to or have already ruled out. Our reaction is denial, sometimes mixed with hurt or anger. Perhaps we feel overwhelmed, maybe to the point we feel that someone has knocked the wind out of us. This time, our feelings won’t settle down. Time passes and the reasons that person gave for what they believed are still bouncing around our head. Eventually, our mind acknowledges that there was some truth behind what was said and we start the difficult task of researching and integrating the bit of new knowledge into our world view.

I can give you several examples from my life. When we adopted MK we knew she was exposed to alcohol in-utero. The specialists completed testing in 1986 and assured us MK had gotten lucky. She did not have FAS. I was relieved. After a difficult childhood and a more difficult adolescence, a neuropsychologist who evaluated MK at 17 said she was FASD and RAD and probably would need some support the rest of her life. It was not a diagnosis I was prepared for. I had never heard of RAD and FASD had all ready been ruled out! Seven years later, I find myself mostly in acceptance. It was a long, hard journey.

We knew that GB had a lot of delays when we got her. She started Early Intervention at 7 months. EI suggested taking here to see a neurologist. I did and within 2 minutes of examining her, the doctor announced GB suffered prenatal exposure to alcohol and had FASD. Nobody had ever mentioned it before and I was blown away. Over six years later, after much research and multiple evaluations,   I have integrated this into my worldview of who GB is.  Last fall, in the middle of a neuropsych, I was told GB was autistic. They gave solid reasons for this diagnosis, but a took a lot of research and observation of GB- months’ worth- before I knew they were right.

These are examples of things I didn’t  want to know. Most parents have at least a few of these moments. Special Needs parents tend to have more than a few. It is really difficult to process and then deal with these world changing truths.  I remember being so angry at the neurologist that first announced  that GB was FASD that I simply walked out. Shooting the messenger is neither kind nor productive. Although that is what I wanted to do when the neuropsychologist told me GB was Autistic, I was able to refrain. It still took months before I accepted the diagnosis .

Each loss, each blow to our kid’s future, needs to be grieved. The only way to get through denial to a place of acceptance is to go through the grieving process. Then we move on to make sure our kids get what they need.

2 thoughts on “Things We Don’t Want to Know

  1. Thank you for posting this. So often I read on special needs blogs, "We are the experts on our children." I get that this is usually true. And I get the need to say and reinforce it–doctors and other professionals have so much inherent authority and power that it needs to be said, otherwise many parents will be too intimidated to speak up.But I've always wondered–what about those parents who really are in denial? Or, at the opposite end of the spectrum, isn't there at least one parent in history who has underestimated her child's abilities? I've been told that my aunt (who is mentally disabled and in her 60s) couldn't even get herself dressed in the morning before she moved into a group home about 30 years ago. (And it was my aunt who insisted on the move, not my grandma.) Before long, my aunt was able to successfully use NYC public transit to take herself to therapy appointments and visits with her boyfriend. I don't think my grandma was necessarily wrong about what she thought my aunt was capable of. I think my aunt really was that limited so long as she lived at home. All the junk from a less than perfect mother/daughter relationship probably really did prevent my grandma from teaching these things and my aunt from learning them. It took a neutral outsider, without baggage, to work with my aunt. But I digress. What I really wanted to say was thank you for bringing up this side of things.

  2. I am reminded of when Ms A was first born and I was given a packet of information about spina bifida. In that packet was information on Chiari Malformation, and it talked about possible mental retardation. I said "no" and closed that pamphlet and stuck it in the back of the notebook. There were very few who didn't want to ride down the Nile with me. But yes, those that did often put their thoughts in writing and I just didn't process those words. I've gone back into some of the reports from when she was young and I am surprised to see, to understand, the meaning of what they had written. Sometimes it feels like my grief over this one (large) aspect of her will never end.I am glad to see you are working on really facing and dealing with the autism diagnosis.

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