Editorial Note: This post is written by an Aspergers Mom I met through my Confessions Facebook Community. She has been experiencing some really difficult times with her son. He is now 18 years old ...an adult, so he is even more difficult to manage. She can't be sure if he is taking medication or not. He is big, and strong and can not be made to do anything. Everyone's journey is different. Her experience is different from mine but I'm sure not all that different than many other parents.
I keep an open mind and never discount the feelings of other parents raising kids on the spectrum. I do not judge their thoughts or feelings ...because I don't march in their shoes. If you line up a group of Aspergers kids ...each and every one of them will be different. That is why it's called a spectrum. I see that in my own life with two children with the same diagnosis, who could not be more different.
Today I share her thoughts with you. It's raw and it is the reality of this Aspergers mom and many others...
Aspergers Awareness Moment
I love and adore my son unconditionally but autism has cruely robbed us of who my child used to be and what he could become.
I remember him as a giving, loving, intelligent, affectionate and happy child. and then I started noticing things that were not normal, things that were against his nature....so I took him to countless of doctors. They all told me different things, none of which I accepted...until I read about Aspergers.
Aspergers is cruel and mind boggling, it is never ending and there is no cure.
Everyday that we have to walk on eggshells to prevent meltdowns in which he can break windows, mirrors and china cabinets with his bare hands and even worse, harm himself because he gets so angry at himself for losing control.
You see he has no choice in the matter...once he loses it...Aspergers takes over and he becomes an obsessive, selfish, impulsively violent man-child and honestly...it is scary to watch.
Everyday I dread the phone ringing in case there is bad news about my son
Everyday I worry is today the day he goes over the edge?
I try to see his soul. I think back to when he was a baby when he was all those loveable things. I hold on to those memories for dear life.
I need to...in order to cope...to give him encouragement...to praise him everyday and to love him.
Everyday I hold on to those memories in order to stay strong for him. I wonder if those things are deep within him buried deep down inside and no one can reach them...not even him.
It's difficult to watch him beat himself up over the times he loses it. He knows what he does is wrong and hateful and he feels so bad afterwards.
He struggles to reach in deep to find himself as he used to be...to remember how he used to be. But he cant find himself. He is lost to Aspergers.
So you see autism can be cruel.
I try to look at his soul and the way I do that is to remember him as a baby everyday to get through another rollercoaster day of uncertainty and fear.
So now you know why I hate aspergers with all my might.
I want my baby back. I want to be affectionate with him, to praise him to show him love...yet he doesnt feel these things, they are lost to aspergers.
I want him to hug me back, to give me a sunshine smile like he used to.
I want to hear him say I love you mom without being prompted.
I want him to feel emotion, to be happy with himself, to achieve new goals.
I want him to live without fear and embarrasment because he knows he's different. He longs and tries to be like everyone else and it hurts to watch him not succeed.
It hurts to watch other kids make fun of his efforts to fit in.
It's hard to watch adults stare at him without compassion, wondering what the hell is wrong with him.
I wonder what will become of his future.
I can guide him and teach him but I never know when Aspergers will come to rob us again of
another step forward.
This is why I HATE autism and Aspergers. It has taken my son away from me and those who love him.
I love him without question...unconditionally, but I have to remember who he really is...that sweet innocent baby that I held in my arms not so long ago.
So no...I do not feel blessed to have been cruelly robbed of my son.
I have learned so many things...but I have also experienced such deep heartache that its difficult to breathe sometimes.
I feel hatred towards Autism and Aspergers.
~Another Aspergers Mom
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.
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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