Graduation?

If you follow us on social media, then you probably know Joel attended his first regular high school prom and he attended his graduation! Woo-hoo!

Prom:

Joel is an amazing dancer and loves going to shindings, but we have never let him venture out on his own. He’s gone to special needs proms and dances but my sister and I have always gone with him. I know… I know… special needs proms? What about inclusiveness?!?! Look, I’m all for inclusion, I really am but I’m also for Joel having a good time. Joel loves going to special needs proms and I won’t stop him from going for the sake of inclusion. With that said, he technically wasn’t on his own because his teacher accompanied him with a few of his classmates but nonetheless, he was free to do what he wanted. Which can be scary. What if does something inappropriate? What if someone does something inappropriate to him? What is he gets lost? What if the other kids are mean?

But it turned out great. Our family gets nervous about letting go off on his own especially because he’s considered non-verbal so he can’t tell us if something happened. He’s also very friendly and can easily be persuaded do something he shouldn’t. He does things on his own here and there and finally, Joel got to experience his first real prom. He even made our local news:

Graduation:

Joel is 18 and this was his senior year, but he can and will go back to high school for at most another four years. WHAT?!?! How??! Let me explain; so Joel is not on a diploma track. This means when he walked across stage he got what is called is a certificate of attendance. He can stay until he’s 22. Some people ask why, why doesn’t he just leave after his actual senior year like everyone else. Well, because simply put, we don’t have the money to provide him with the services and resources he is entitled to while still in the public school setting. There are some vocational programs we’d like to get him into as well but it’s expensive.

As I’ve mentioned before, Joel is on a waiting list for a waiver that would be able to provide those services to him but the waiting list is about 14 years long. Although Louisiana has changed it to need-based, one still needs a score of a 4 or 3 to get services now otherwise your back on the waiting list. Joel was given a score of 1.  4 = critical, 1= planning (he doesn’t need anything right now apparently – *insert eye roll here*.) This is a whole nother story; I’ll get into this in more detail in another post.  (Side note: this is why we have our shop)

So did Joel really graduate? I guess not, but he walked across the stage and loved it. We decided to let him walk across the stage this year because this would be his exiting year if he were a typical student. Ya know, why not complete the senior year experience for him now with the schoolmates he’s been with forever.

BEHOLD:

You can tell he was a little nervous before the ceremony but look at his sweet smile afterward.

Joel has always wanted a waterslide for his birthday, but his birthday is too cold. So after his graduation, we decided to throw him a water slide party.

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Joel’s Birthday Revelations

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.

Joel34

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!

 

Friendships II

So, last week I wrote a bad example of friendship and I thought I’d highlight some good ones. 🙂

I really appreciate my friends who consider Joel a friend. Even people who I do not know that consider him a friend. There have been many times where we run into people Joel knows in a public setting like the mall or grocery store. Joel usually tries to act cool and will barely lift his hand as he waves and says ‘hey’ in a most nonchalant voice.

My favorite thing is to see how he reacts when my friends come over. He greets them with a happy smile and will not leave us alone. He wants to be a part of the conversation. He’s super talkative even though most of what he says is not understandable. It can be a little annoying and I would like to thank everyone for being super cool about it. Thanks for your patience and understanding! It makes me feel proud of my friend my when they pretend to know what he’s saying and try to hold the conversation.

It’s much better in my eyes than when some people just start laughing. I’m sure they aren’t laughing at him and they just don’t know what to do. But its just weird when people laugh in the middle of him trying to make a conversation. He notices, he knows what he said wasn’t a joke. I’ve seen it time and time again. Joel is trying to talk to someone and they laugh just because they don’t know what he said. He pauses and looks confused and says, “oh, okay.”  What’s worse is when people babble back… eww. I won’t get in to it.

So shoutout to those who make him feel included and heard! I can’t say this enough!!!!

So here’s an example:

So I’m going to write about my boyfriend, I was trying not to mention him because it’ll sound biased but it’s the best example I can think of…I’ll use a real name for once. Huy.

So Huy has always been extremely great with Joel. I’m sure Joel loves him more than me.. because he says so all the time!! Huy has proven to be a friend to Joel many different ways. Joel face times him when he’s upset and texts him constantly. When I can’t get joel to listen, I’ll call Huy and he is always able to get Joel to behave. When we’re out and about I can never get Joel to hold my hand but he’ll gladly hold Huy’s hand. When Joel needs someone to take him to the restroom, we can always count on Huy to take him. Huy is always there for him. No questions asked. No protests. He never looks for a way out and he doesn’t look for anything in return. I’m sure he can get annoyed with all of Joel’s texts and Snapchats, but Huy’s is always a good sport. It’s been over 4 years and Huy is still as great with Joel as when he first met him.

Thanks for supporting him. Thanks for hyping him up when he’s dancing. Thanks for loving him. Thanks caring for him. Thanks for giving advice. Thanks for being Joel’s best friend!

 

Friendships

The story behind this picture is a good one. My sister was taking my senior pictures when I graduated college and Joel interrupted to pose. I’ll post the rest of those pictures at the bottom of this post.

Joel makes friends very easily, especially if your a guy around his age. I’m so appreciative of everyone who is kind and accepts his friendship. Thank you to those who:

  • listen to him even though you can’t understand what he is saying
  • go along with never ending games of poking and pretending it wasn’t him
  • hold his hand
  • Let him play on their phone
  • Let him take pictures for Snapchat and Instagram
  • Texting or Snapchatting/DMing him back even though he sends jibberish

You’re the best. But like always there’s always people who are just are not too nice. There was this one time when we went to a restaurant where this person, we’ll call Mr.Krabs, worked. Mr.Krabs is a family friendish, and goes to our church. He’s close to Joel’s age and like any normal person, Joel sees this person as a peer and always gets excited when he sees him because Joel sees this person as a friend. To be fair, Mr. Krabs usually will be nice and greet him in a playful way. But Mr.Krabs, couldn’t keep pretending to be nice to Joel all the time. (Mr. Krabs and I argued a lot about little things in a friendshipy kinda way but we remained amicable, but somethings I can’t easily look past. And somethings includes how you treat my brother.) 

So, we go to the restaurant and Joel immediately gets excited when he sees Mr.Krabs. This means Joel is loud and laughing a lot. Joel tries to be playful and is not taking the hints that Mr.Krabs is not in the mood. (Sometimes I can see that Joel is being annoying and I try calm him down, but if your gonna be rude, I’ll let him annoy you.)  Mr. Krabs kept giving me looks as if he wanted me to do something. At first I was trying calm Joel down but I can’t control him. The looks were okay I guess because they were pointed at me and not Joel. But as soon as his annoyed face and tone of his voice was directed at Joel, I had a problem. Strike 1.

The restaurant is small and it wasn’t very busy, maybe Mr. Krabs was having a bad day. I know I can be mean to Joel sometimes, but all Mr. Krabs had to do was be nice for 10 minutes. We weren’t in there very long at all. Joel was eating his order very happily and making gestures with his hands. Mr. Krabs grabbed his hands and placed them on the counter and said “shhhhhh.” Strike 2. Joel is thinking this is a funny game and he doesn’t see that Mr. Krabs isn’t being nice. I let it go at first, because I didn’t want to argue with him. Then came strike 3. He had had enough, looked at Joel and said, “Oh My God!” Then turned to me and said, “Can’t you control your brother.” So I yelled back kinda. “No, I can’t. You know he has down syndrome and he doesn’t get that he’s annoying you. He is just trying to play with you because he sees you as a friend.” Mr. Krabs then said, “Well, make him chill out.” So we just left. There was no point to continue arguing.

I can’t make everyone patient and kind to Joel but I wish I could. It always catches me off guard when I come across people who are not kind about disabilities. I always expect people to be patient and nice, and that is not always going to happen.

Joel’s reaction to this situation is very sweet. He never saw the rudeness and continues to always see this person as a friend and is always excited to see him. Someone asked me once who I admire the most in my life and my answer was Joel. Then they asked why and I dreaded answering because I hate getting emotional. My answer is because he always sees the good in people. He is never prejudice. He doesn’t hold grudges. He will always see you as a friend first. You can be mean to him and he may not notice and if he does, he’ll forgive you within minutes. I love him dearly, and I’m so thankful for those of you who are kind to him and keep his friendship alive.