It's hard to believe that sixteen years ago...I gave birth to the most beautiful baby boy I have ever seen. He was a perfect little blur as they whisked him away quickly because he wasn't breathing when they took him from my body. It took them 5 minutes or so to work on him before we got an actual cry. They only let me see him for a moment before they took his little 4 pound, 8 oz body into the ICU where he stayed for 5 days until they could see him actually gaining a little weight. I couldn't wait to get him home, where the nurses could no longer tell me what to do with my own baby boy. There was absolutely no fear in bringing him home to take care of him on my own. I couldn't wait!
What I didn't realize is that I should have been in no hurry. I would have a lifetime of years ahead of me. My life would never be the same. I would no longer rest on my own schedule, but on his. In fact, I would almost completely loose who I am, so that I could help develop who he will be in this world. I would be in for the roller coaster ride of my life. I became a mother...who would give up her own life in order to make his life better. As I held that perfect baby in my arms...I had no idea really what being his mother would actually mean.
We perseverated over the birthday ALL WEEK LONG leading up to the big day. He actually sent out an e-mail announcement to the entire family, reminding them that his 16th birthday is Sunday (you know in case they forgot or weren't thinking about it). He tried very hard to act like it wasn't all about the gifts...at least he TRIED. He also made an effort to graciously say thank you for what he did receive, even though it was mostly scripted. (I know I'm supposed to say thank you and act all grateful...whatever that means, so that everyone won't be mad at me and they will give me more gifts in the future.) I was glad to at least see him at least making the effort.
On this 16th birthday, Red opts out of the boring Six Flags trip that he likes to take every single year...mostly because he doesn't really have anyone to go with. He only has one friend who actually likes Six Flags and roller coasters as much as he does. Instead, he asked for a dinner party with the Aspergers Meetup group along with a couple of his other good friends.
So on Saturday night, we met at his 2nd favorite restaurant, Cheddars, because his first favorite (BJ's) is too expensive for a large group. We had a great turn out and the boys all had a really good time. It was so awesome to see Red smiling, genuinely happy because he was the center of attention. This is a lifelong dream for him.
There were about 20 of us in total, parents all sitting on one end of the table while the boys sat conversing at the other end. Most of the boys were all actually very social, which was good to see. There were a lot of plain cheeseburgers ordered (no condiments of course). Most them ordered double burgers and woofed them down in nothing flat. Hubby allowed them all to order whatever they wanted for dessert, which thrilled them all immensely.
The creme de la creme for Red was his big brother showing up for the celebration. The prodigal son whom we have not seen in months, though he only lives 10 minutes away, did his brotherly duty, showing up in his Alpha-phi-Alpha fraternity jacket, fresh off of crossing over into the brotherhood. Red was so proud to introduce him to all of his friends. Slim Shady, sat down on the boys end of the table and actually engaged in conversation with all of the them. I think that alone was the single, best gift.
On Sunday, his actual birthday, Mama slaved over a hot stove to prepare the traditional fried chicken, macaroni and cheese dinner. This time it was accompanied by a spinach salad, which Red actually ate. He is trying to be healthy so that he can loose a few pounds to be ready for the wrestling team that he hopes to join next month. Mama topped off dinner with homemade white chocolate cookie bars with ice-cream. We all sang happy birthday to him...even Harry our dog tried to get in on the celebration barking as we sang. It was a very special day for a very special boy. The difference is this time...he actually seemed grateful.
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| Blue picked out the most PERFECT card for his brother... |
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Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
diyalabs6192603 11p · 192 weeks ago
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Spoil your cat · 122 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago