Not the expert mom with all the answers...the mom who can't stop looking for them.
Wednesday, January 5, 2011
Baffled
My first born son is now 15 years old. We have known that he has special needs since he was a toddler. He was first diagnosed with a speech delay, later ADHD, then depression, and now Aspergers.
It took a while for me to accept the ADHD diagnosis, because at first I thought that the schools just toss that label around like it's a frisbee. I had private testing done where the diagnosis was confirmed. It did explain some of his behavior i.e. his tendency to be off in his "own world" and his impulsiveness. It did not however totally describe him. I knew there was something more. He was a jigsaw puzzle and all of the pieces were not quite put together.
When we received the Aspergers diagnosis in his first year of middle school it was scary, but at the same time, it was a huge 'ah hah' moment. It explained so much...the incessant talking about areas of interest, the obsessions, the difficulty with peer interactions, depression as a result of feeling different than others, lack of understanding humor, idioms and context clues, difficulty with understanding fiction while he was an excellent reader of non-fiction. It further explained his sensory issues and limited diet.
Here we are three years later and I still look at him sometimes and say, "WTHeck?" What is with this kid? Why doesn't he get it? I've said the same thing over and over again. Does he think if he just keeps asking me the same questions, the answer will somehow change. We usually have this problem whenever the answer is no. No -we can't buy that. No -you can not have company today.
Is he thinking let me just beat her down and wear her out -eventually she will give me what I want. That is exactly what he's thinking. He has actually said it out loud, "Why don't you just give me what I want so we can avoid all of this." It kind of sounds like a threat...or at least intimidation.
If you have been behaving atrociously, I am not going to turn around and reward you by allowing you to have company. If you were not on time for school -I will not reward you by giving you a ride home. You will take the bus. If I take you to a restaurant and you are rude and ungrateful, why would you turn around and say, "Now can we go somewhere else?" The answer would be NO!
O.K. so in my head, I know the answer to many of my own questions. He has autism. He is emotionally immature. Sometimes, he just likes hearing the sound of his own voice and his own familiar dialog. He makes statements and asks questions that comfort him somehow -even though they annoy the hell out of me. Also -he is a teenager. It his his job to test the limits.
It is my job to maintain the balance, keep the peace and to hold the line. However, just because I know there is a reason for his behavior, doesn't make it any less painful to deal with. That doesn't take away the headaches. I often find myself wondering is this Aspergers or just a teenager trying to push my buttons? What's the difference? It's all exasperating.
Lately, it seems like things are going backward not forward. It almost seems like he's regressing in some ways. I am looking towards the finish line (although I know it's not really a finish line). I'm looking at him becoming an adult. I want him to eventually become independent. I want him to be successful. I want him to be out of my house. (I know that sounds bad...but hey, these are my confessions). While he seems to be running in the opposite direction or at the very least, running on a treadmill that goes nowhere.
Why is it that I am watching his brother (who is 3 1/2 years younger and also has Aspergers) take off like a lightening bolt seemingly growing past his brother? In this past year I have watched Blue become an independent, organized, self-starter, excellent student. He gets up on his own every morning, takes care of all of his responsibilities for school and personal hygiene independently. (Except the occasional reminder to put on deodorant.) While getting Red to do any of the above is like pulling wisdom teeth with no anesthesia or laughing gas. (Well..white wine is my laughing gas, or if things are really tough, a martini or a margarita.)
By the way, over Christmas vacation Red was up almost every morning before everyone else -usually around 8 a.m. Sunday morning -he wanted to go to church with a friend. He set his alarm and was up and dressed, on his own by 8:15 a.m. Two days later, when school started we were back to "I'm just so tired! I can't get up. I don't know what's wrong with me." Yes -you know exactly what is wrong. "I just hate school because I have no friends." Exactly!
I realize that every child with or without Aspergers is different and I shouldn't compare him to his brother. Still, it is baffling. I wish that he could be more introspective and tell me what he needs. He can't seem to do that, so I have to help him figure it out.
I am the one person in the world that he knows will love him through anything. Somehow that entitles me to bare the brunt of his negative behavior. He doesn't have many friends, that makes him sad, that makes him depressed. Who does he take it out on? Me! He's bored so he spends a lot of time fixating on the next thing he wants to buy and when he can't get it right away, who does he bug to death? You guessed it...me!
Where is his father in all of this...well thank God, he's still here. Many fathers of special needs children can not deal with the pressure. They often have a hard time with the amount of time and attention that these children need. Not to mention, disagreeing on treatment and parenting issues.
In our house, Dad's patience aren't nearly as long as mine. Red knows this -so he will only approach Dad with certain nonsensical things and he will only push so far. I play completely dumb when it comes to his computer, so he has no choice but to go to Dad with those issues. Dad also has a knack for drowning things out much better than I do. He also has the added benefit of escaping to the office or out of town on business on a regular basis.
The bottom line here -is that there has to be a better way. Something has to give. We need to do something different because I'm loosing it.
One of my New Year's resolutions is to find that better way -to get some answers and to help him move forward. I have to keep him busier so that he won't be bored and bug the s#*t out of me. I have to find a social skills coach, a mentor, someone or something to help him to help himself. He has a therapist and a Psychiatrist, but we can't keep doing the same things and expect different results. This may mean having him re-evaluated and getting a second opinion from a Neurologist or Neuropsychologist to make sure that we are on the right track.
It's crunch time. I have three years before this dude is 18. I may be wishing on a star to hope that he will be on the road to independence by then. I do know this for sure...he has loads of potential. I intend to see to it that it does not go to waste.
Comments (9)

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Comments by IntenseDebate
Posting anonymously.
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 · 121 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