Wednesday, May 22, 2013

Caution: This is an Autism Moment

Reader warning: This entry is about my daily struggle being an Austism Mommy for my glorious son, Danny. If that doesn't interest you as much as my homeschool news, then this post is not for you :)

For those of you who don't know, my oldest son was diagnosed last year on the Autism Spectrum. Because he has social quirks and learning deficits all over the spectrum in an odd combination, his diagnosis is technically PDD/NOS - Pervasive Developmental Delay/Not Otherwise Specified. Not to go off on a tangent, but the DSM, the diagnostic "bible" of the psychiatric/psychological set got a makeover this year and the newest version, the DSM-V  deletes this diagnosis and simply puts all Autism/Aspergers/PDD-NOS/Retts patients under the ASD (Austism Spectrum Disorder) diagnosis.

This means my son's diagnosis will (technically) disappear. Looking at the new specifications of the DSM-V, Danny will no longer meet the qualifications for autism. In fact, he will not meet ANY of the criteria of ANY official disorders. He will simply be "quirky", with no hope of getting any if he was getting any now, which he isn't. :(

Believe it or not, that's actually not the cause of my rant today. Today, I'm having AMF...Autism Mommy Fatigue. 

Most of the time, I can work with our daily schedule around our sons and our differences and quirky behaviors don't even show. We have done so well adjusting our lives around the needs of our sons that we don't even know we are doing it any more! I did have one of the psychologists that evaluated Danny note that we had adjusted our family to fit his needs...and I don't think she meant that as a compliment. But honestly, what options did we have? 

When your son can't sit still long enough for you to receive your meal, much less finish eating it, you don't go to restaurants as a family.

When your 10-year-old son can't understand why it's not okay to yell at a 3-year-old boy who accidentally pushed you, you don't go to the playground when other children are there.

When your son has NEVER been able to tolerate anyone touching/brushing/cutting their hair, you don't take him to the barber anymore - you learn to cut hair yourself and do it every six weeks for years and years....

...and when you are cutting his hair and realize that his extreme scalp sensitivity has led to a horrible case of I-dont-even-know-if-I-can-call-this-dandruff-it-is-so-horrible - then you give another lesson in personal hygiene and find yourself washing your little boy's hair again, just like when he was three.

When your son needs the extra understanding and time required to actually LEARN educational material rather than just perform the required sequence of lessons in the required time, then you take him out of that environment - and you stop your own life and teach yourself how to teach and become a Homeschool Midlife Mom.

When your son can't tolerate more than a handful of food tastes, you stop making family meals and are sad - or you make two of them and seethe with resentment.

When your son shakes and cries with fear some nights because he's scared to sleep alone in his room at age 11, you have family campouts in your bedroom with your son in a slumber bag on the floor and lose the last of your privacy.

When you take your son(s) to a group homeschool activity on a beautiful day in a beautiful park and he whines for the entire visit because the toy he brought doesn't work because YOU didn't tell him something and that YOU should have told him to bring another...and then happily frolicks in the creek you are passing as you desperately try to walk to the parking lot and just LEAVE and get home to your quiet cup of coffee at home...

And when enough of these happen on one day...or too many days in a row...then you realize you are Autism Mommy and it is hard. So very, very hard. And you have given your life and soul to someone you love very much, and love to raise  - but would very much like to watch grow, learn, and grow up. Before you lose your mind.

He is growing. He is learning. He is amazing and wonderful. But parts of him are the same as they were ten years ago. And Autism Mommy is tired today.


  1. Wow!! I am sure my daughter understands, and so do I. But it sounds like you have had everything dumped on you at once, and that is rough. More than rough? Especially, when you are worn out. I have to admit to being kind of confused about the autism spectrum thing at the beginning. I guess I will have to do some research. I don't understand about the changes and had not heard about them.

  2. I love homeschooling and would not consider any other form of education for my children, even with it's challenges. And homeschooling a child with special needs...well, it's got its own special challenges. I have a daughter with Down syndrome. Although the diagnosis is different than your son's, I understand your struggles. It's a tough job. However, putting her in school with a teacher that has 20+ students and doesn't have the time or love for her that I do, is not an option I want to consider. I'm sure you agree. And let's not even get into the IEPs. I would not trade homeschooling for mainstream education. She is doing so well learning at home.
    I was reading through a few blogs and chose to stop and comment on yours because I could read the frustration that I feel some days and can relate to. I want to share with you the curriculum we have used with our children, and it especially works so well with our daughter with special needs. She really enjoys the animated and interactive lessons on Time4Learning. I like that if she gets an answer wrong, it will explain the concept again, but in a different way until she understands. Because she's weaker in math than Language Arts, she works at a different grade level for math. We're not confined to one grade level for all subjects. And best of all, she can work independently if I need her to. I just look at her progress report to see how she did on her lessons and quizzes. If she scored low on something, we can go back and repeat the lesson together.
    I'm always close by if she needs help, too. Time4Learning has been a God-send for us!! I just thought I'd share that with you. This link has some good information on homeschooling with Autism, too.
    I hope this helps. We use it through the summer so she won't lose her practice in math or reading. But she doesn't mind at all. :)