The word NORMAL is kind of a bad word in the special needs world.
The premise is the feeling of ... "what IS normal?" When there are so many different body types, beliefs, education systems, religions, etc, etc, etc ... what exactly IS normal? So the buzz word of de jour is "typical." Normal is a word we all use to basically say average or based upon the average. Today, the better word to describe this is TYPICAL. He's not typical. No truer words were ever said.
I've made no secret of Luke's Fetal Alcohol Spectrum Disorder diagnosis almost two years ago. But what I'd like to do more of this year is document our daily struggles as well as educate the general public, friends, family members and other adoptive families.
When Luke was 9 months old I said to our general doctor "he's not normal." She laughed at me (as one would and I was kind of laughing at myself!). But what I meant was "something is off with him and my gut is telling me IT IS SOMETHING." She responded "he's a BOY" and "it's too early to do anything." I really liked her, but this was NOT sound medical advice. Hindsight, I should have followed my gut then and sought out more help ... IE ... FOLLOWED MY GUT.
Over time and after years of pounding down doors for answers we arrived at the diagnosis we have now (and a list of others). And we the knowledge that NO, he is NOT typical. Academically he is very normal. Socially/emotionally he is that of a child 1/2 his age. We have to mentally think that ALL OF THE TIME because when you look at him ... he does look and present TYPICAL. Then, you will hear one of his massive meltdowns and simply close your eyes to listen. Listen to him closely and he sounds like, well, a four-year-old who didn't get his way. This was a really great LIFE HACK from a really awesome therapist. When he's raging/acting out/melting ... to close my eyes and listen for a second. It has helped me time and time again reset and move forward.
But what I really want to share with you is that sometimes its REALLY HARD to be out in public, or even in our own neighborhood/school/church/family with him because he does look VERY TYPICAL. So when raw words come out of his mouth or behaviors that are horrific, socially inappropriate behaviors, a hard time transitioning, an inflexible standoff or complete lack of impulse control ... we most often look like parents that don't do anything about their behavior problem kid. The fact is FASD affects reasoning, rational thought, impulse control and regulatory behavior ... most often FASD looks like your kid is just a giant A-hole.
When you read the above, it helps you understand a little bit better. Below is another great graphic about what Luke's brain might look like ... I can attest ... it for SURE looks like this!
Basically, like having a toddler for A LOT of life. And you sometimes get tricked into forgetting when you look at the child by size or by what their peers are doing. A child with FASD isn't able to function in the same way as their peers, even when it seems like they can.
I've often found myself under a hot shower in tears just wishing my kid had a predictable or physical deficiency. I know. It's horrible. I find myself thinking it must be easier than THIS. I slide down that slippery slope of comparison where comparison just isn't fair at all. And to my friends dealing with other special needs, I'm sorry. I am not lessening your pain & daily struggle.
But in a year where I am trying to embrace KIND ... I am in turn asking you to embrace KINDNESS and acceptance when you encounter others. Be slow to judge, quick to offer help and know when to just pat a mom on the back. You just don't know. What might look like a massive ungrateful behavior problem might be something far deeper than you will ever realize. And in that moment, that Mama does NOT need your condemnation or judgement. She needs your kindness. Nothing less, nothing more. It will be felt and who knows, maybe give her the strength she needs to move forward in a positive direction in that moment. So I implore you, BE the kind of person to others, that makes something BETTER, not worse.
Having a non-typical child has been enlightening for our family and made me a better person. I know all sorts of things I would have never known, I see the good in things much more readily than others who don't face these challenges and I embrace all of the things God has taught me simply by picking me to be Luke's mom. I am definitely not normal! ;) And I'm ok with that.