Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, July 31, 2016

Funny how that works

When you adopt a child, you are agreeing to accept whatever diagnosis may have been missed prior to adoption, or whatever diagnosis comes up later as they grow. This is just how life works, and if you don't want it to work that way, you should never adopt. Just say'in!!!

As an example, there was Axel's diagnosis of AAI (Atlanto Axial Instability) just weeks after arriving home from Serbia. This is one of those things that can happen in kids who have Down syndrome, and something as an adoptive parent I was prepared for.

With each of our adoptions we had to list whatever criteria we were willing to accept in any children who's referral we would accept. Our criteria were fairly broad: Over age 7, Down syndrome, Male or Female. We intentionally did not accept referrals of kids who also had a diagnosis of Autism or Fetal Alcohol Syndrome because we didn't feel prepared to deal with either of those diagnosis, although we knew it was very possible any of our kids could later be diagnosed with anything later on.

Audrey has been home 2 years now. For some assessments we prefer to give the kids a year+ home, allowing them to shed some of their institutional behavior, gain some language, and just generally have some experience living in the real world before putting them through an assessment type situation.

Sometime around September last year Audrey's behaviors started to change. Mostly she just came out of her shell. She became much more noisy, but her noises are just self-stimulating behavior, not communication. (though she does have singing noises, which crack us up!) She dances and sings in her own way much of the day, but there are other noises that are painful to the ears when listening to them for hours on end, primarily moaning and growling. When Audrey gets mad, watch out! Pinching, biting hair pulling and kicking. Most of these are done to avoid tasks she doesn't want to do, or get out of an environment she doesn't like. She still has a lot of repetitive behaviors that, although they are very common among post-institutionalized children, they are also common among kids who have Autism.

I have known for a long time that Audrey's behavior and functioning were beginning to look more and more like Autism. There was the question of "Institutional autism" - which is not a recognized diagnosis - which is autistic-like behaviors caused by neglect and severe sensory deprivation, which all of our kids adopted from Serbia experienced.

Audrey recently finished an assessment with a child psychologist, who went over all of her records from school, reports from us and from the county. Audrey has now been diagnosed with "Severe Autism" and "Profound developmental disability".

Yesterday we took all the kids to see "The Lion King" (A HUGE thank you to Minnesota Parent and Hennepin Theater trust for this amazing gift!!) This was a "sensory friendly" performance, with decreased sound levels, lights that stayed on, and, since there were hundreds of people in attendance who had a wide variety of disabilities, there was no need to worry about unusual noises our kids may make at inappropriate times. :-) The more I looked around, the more I realized how much three of our kids fit in with people who are on the autism spectrum. Funny how that all works, isn't it? When we say "No, thats not on our list of criteria" but that is what we will deal with anyway. Noting has changed, we have the same kids.  Only a new label, which will be helpful to Audrey in the future as we strive to understand all the things that make her tick.

Two more of our kids have assessments coming up, and I have no doubt they'll each be given the additional label of Autism. 

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