As I lay in bed this morning...as I do every week day morning, I absolutely dread having to get up and awaken the boys. Red sets his own alarm and if he is so moved...he may actually get up and get dressed. But most days, he walks across the room, shuts off the alarm and then gets back in the bed...under the covers. I think Blue has given up on the alarm setting. If I had to bet, I would say that the meds he is taking make him sleep like a log. I try to wake them both as gently as I can. I give them extra time to lay around for a few extra minutes. Heaven forbid I rush them! I still dread the process!
This morning, I think to myself...when I had these children, I never thought about having to wake them up for school as teenagers. I don't think my mother ever had to wake me up as a teenager. I set my own alarm, got up, got ready and rode the city bus across town to get to school. If I didn't make it on time...that was on me.
There are a million things you never think about when you have a baby. As much as I love my godchildren...when my BFF recently got pregnant (this is child #4) all I could think was, "Have you thought about when these children become teenagers?!" Of course, her 10 and 12 year-old girls are much better behaved than my boys. I pray for her sake that these last 2 children will be the same. She is an awesome, loving, but hardcore mom. She doesn't take any crap!
Anyhoo...here is my Top Ten List of things I Never Thought About before I had my babies:
1) Never...ever did I think I would have a child with special needs...much less, have 2. Since having special needs wasn't a blip on the radar...what it would be like to parent a teen with special needs.
2) I never thought about what it would be like to raise teenage boys. Silly me...I just assumed I would have a perfect set -a typical boy and a girl. Never thought about what it would be like to be completely responsible for guiding to young men towards independence and adulthood.
3) Never thought about all of the nights of sleep I would loose, all of the tears I would shed...that I would feel every single feeling that they feel.
4) Never thought I would wait almost 4 years to hear the word, "Mama." Now that they are teens with Aspergers...I wish I could change my name and not tell them the new one.
5) Never thought about all of the jobs that are hidden behind the tittle -Mom i.e., Nurse, Therapist, Pharmacist, Life Coach, Advocate, driver, referee, cheerleader. I guess I knew I would have to feed them...which would mean I would also be a cook. I just never knew I would come to hate it so much.
6)Who would have thought I would ever hear the words, "I wish I could kill myself," while my child is crying uncontrollably.
7) Having to decide weather or not to give my kids psychotropic medications and all the nightmares that come along with that ...no one warned me this would be a possibility.
8) Sitting in a Pediatric, Psychiatric ward with my child...who me? No freakin' way!
9) Having to talk to ...much less actually, call a police officer or mental health officer because my child's behavior has become violently out of control. Who does that? Apparently me.
10) Most of all I could never have imagined this immeasurable, unconditional love that I have for them. I could never have conceived the magnitude of our connection.
This life with my children is simply unimaginable...
What's on your list?
Logging you in...
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