Joel’s 18th birthday was this weekend, he’s officially an adult! Our boy is so grown and he never ceases to amaze me and make my heart melt.
This was very big birthday for us. We celebrated his golden birthday on Sunday, 18 on the 18th. 18. EEEE! He’s reached adulthood. But what does that mean for someone with a cognitive disability? I know I wrote about guardianship before but I’ll go into more details about his transition into adulthood later on, I promise.
This birthday was special. It was also the first time he celebrated with his own friends. Joel’s friendship circle has always just been family, my friends and family friends. But this year he branched out and has met a lot of people just like him and he invited some to his party at his most favorite place on Earth, Laser Tag.
Anways, about two weeks prior to his birthday, we got the letter from SSI about his eligibility since he’ll be turning 18. We’d been expecting it and as always I helped my parents prepare for their meeting and filled out all the paperwork. This lead to me going through Joel’s old paperwork and documents from his diagnosis and doctor appointments, and old IEPs.
I learned a lot. I didn’t really get involved in Joel’s appointments and such until he was in high school so there was a lot about his life before that, that I didn’t really know. I only knew what my parents told me and from more recent documents.
One of the documents I was looking for was Joel’s original diagnosis. My mom always told me that they told her right away that Joel was born with down syndrome and that’s probably true and I never did find the original diagnosis. What I found instead was a doctor doing another evaluation of him at 3 months old and writing his assessments to the original doctor who diagnosed him along with a referral to the Down Syndrome Clinic at Children’s Hospital. It turns out Joel got his formal diagnosis at 4 days old. The assessment stated that Joel does indeed have Down syndrome, trisomy 21 and as a result is mentally retarded and may have other significant health conditions that can present itself later on. I understand the use of the word retarded here as it was nearly 20 years ago and it was used medically, but I still felt uneasy reading it especially in light of recent events. Luckily the medical field has replaced that phrase with intellectual disability. (In case you don’t know why, it’s because the term retarded has lost it meaning because people use it wrong and it has become a hurtful and demeaning word.)
The referral that came with this document had me asking my parents a lot of questions. Mostly, “did you know what that said?” Sadly my parents did not have someone to help them understand everything and missed a lot of important things. They hadn’t realized that they missed things because they didn’t understand what was sent home and no one translated it for them. My mom of course blamed my dad (because he supposedly knows more English) but in his defense being able to get by in life with English is different than actually knowing English. English is a hard language to learn especially if you looking at medical documents. The point is that Joel missed appointments and interventions that could’ve really helped him. It’s useless to put the blame on anyone. It was years ago and Joel is still perfect anyway!
Luckily they met a doctor later on who my mom babysat for who help her get other supports and early intervention. I wish I was older then, so I could’ve helped them.
Looking through his IEPs was a whole another ordeal too. Some teacher wrote offensive things and my parents had no idea. Those IEPs were passed down and no one ever told my parents anything. I remember one phrase that stuck with me that was written. Joel was 8 years old when he was finally fully potty trained. At home he was using the restroom on his own better but at school he had a lot of trouble. And I know that teachers have a lot to do and cleaning up accidents is something no one really wants to do, but they had the responsibility to do it. Or ya know… get a para for him. But um, the IEP said, ” Joel does not mind sitting in his own void, and does not want to use the toilet.” I read that phrase to my mom and she got mad. She said she remembers how much of a hard time the school gave her about his restroom needs and how she would constantly get called to go there and change him. I remember once she sent him to school with extra clothes and pull-ups and they made her come back to school and they gave them to her saying they would not change him. I’m sure they were convinced that he wasn’t being potty trained and home which he was! He just had a harder time at school.
I remember when he was born and I was not allowed to see him for a few days. I don’t know why. I remember my mom stayed at the hospital a while as did Joel and my aunts and dad took turns caring for my sister and I. One day, my dad got my sister and I all dressed up and we finally got to see Joel. He was perfect. I remember bragging o everyone at school about him. I had no idea he had down syndrome and I didn’t know for a while.
But I know I told you all about one of my family member’s thought: Religion in my Family and Disability But I just wanted to reiterate how much it sickens me that not everyone was so accepting of Joel. Joel having down syndrome is not a punishment! My dad constantly says that Joel was the reason he changed. (He used to be an alcoholic.) He was a gift and continues to be so!