Off we go

After dinner routine in our house includes family time in the loft. Tonight I noticed that Adele was especially physically confident. I was over-the-moon when I saw her lift herself off of her belly, onto her knees, into a crawling position and actually crawl a foot! She attempted and succeeded a few times before and after the required excited mama video.

When you have a child with a disability, milestones that are achieved cause an amplified reaction by family members. This is for a few reasons: you never know what milestone may or may not happen at all, and chances are, it took longer for your child to reach given milestone.

I am listening to the audio book version of "Far From the Tree" and have reached the chapter on Down Syndrome.  Since the author does not include a chapter on other types of chromosomal abnormalities, this is most likely the chapter I will relate to the most. A story is shared about a boy born in the late 60's with DS.  Dr.'s advised this family to put the boy in a "home" since he would not ever recognize his family or learn anything. The family visits a groundbreaking institution with progressive doctors and psychologists that suggest nurture may superseded nature.  This mom took off running with all types of EI like activities and therapies. The boy was reading at a fourth grade level when he was in first grade. The parents began advising other families of children with DS to follow in there footsteps.

Then it happened. Adolescence, the moment when her son showed both social and academic discrepancies amongst his peers. He begins to become depressed and is taken to see a therapist. Boy graduates with a high school diploma and is eventually placed in a small, well staffed group home. He is too smart for other individuals with DS, but not quite socially up to par with other adults. He is still rather lonely but finds solace in his roommate at the group home.

The mother reflects on whether or not it was a good idea to push her son as much as she did. Her observation was that lower functioning individuals with DS, tended to appear more happy. In subsequent lectures, the mother is realistic with new parents of babies with DS.

I have said before that I am both cursed and fortunate to be in the field of Special Education, having a child with a disability. I can bring a "big picture" sense of what Adele's life may entail thanks to my career, however, I also know a storm is brewing. This is ALSO true of Jade, but Adele's storm will most likely be more intense for many reasons.

For now, I am savoring Adele & Jade's achievements and milestones, but I never take an eye off the approaching storms.