Confessions of an Autism Mom

Being a mom of three with autism has some irony.  Confession Number One:  I have a big fear of being misunderstood.  Since autism is a communication disorder, opportunities present for personal fear mongering.  Exposure to optimism training, through Dr. Carolyn Kessler who was at TEACCH, has helped me look at things differently, including people-pleasing tendencies.  I hope it somehow contributes where it matters the most- in communication efforts to help my sons understand and be understood.

For the past 2 1/2 months, I’ve written about a few phases on my journey.  I’ve given one parent’s perspective on some current issues the autism community faces.  I’ve been fortunate to share choice experiences about life in my house.

CELEBRITY GOSSIP COLUMN” was not received as I had hoped.  Coincidentally, after that post, one child said to me,

God didn’t make me like Frederick Douglas, when he was born in his time.  I don’t know if it’s a gift to be an individual experiencing life and the world itself by myself.  Is it a gift from God for me?  I don’t know.

Confession Number Two:  I remembered what I wrote about autism being a gift and felt conviction.  I said, “I don’t have your answer.  I do know YOU are a gift.  I love you.”

The label of high functioning autism is sometimes misleading.  There isn’t one gauge for autism.  Actually, there are two, who knows, maybe more.  There is an autism gauge and a cognitive gauge.  When I make assumptions about a child based on just one of those gauges (or one gauge for any person) I find that information unsatisfying.  A person can be anywhere on the spectrum of both gauges and have the autism diagnosis.  Some people can have average to high intelligence and also have a lot of autism.

One of my sons is like this.  On school days, a bus takes him to and from the other side of the city because he doesn’t fit in a self-contained classroom.  There is no situation on this side of town where he can be functionally and academically successful without specialized autism supports.  We had to advocate extensively for this to happen.  He would have fallen through the educational crack between Aspergers and classic autism.

High functioning autism is a partial myth because some children and adults struggle, while society assumes they are able to get along because they are smart.  If they fail, people are surprised or even angry.  My son struggles with communication, although he has language.  He has great difficulty navigating.  For example, he joined the cross-country team.  His coaches couldn’t understand why he kept getting lost on the course.  It’s that executive functioning part that people wrongly assume is intact.

Some of us may not see eye to eye on the difference between being “stuck in the anger phase of grief” and righteous anger. Confession Number Three:  For years, I was caring for an elderly relative with high needs plus three small children with high needs, all under one roof.  That would have been an algebraic reality show ( “95 + [Autism x 3]!“). There wasn’t always space or time to process my own feelings in a typical linear fashion.  Perhaps I have had both types of anger.  Like the “Don’t Spill the Beans” game, the partial truths are a balancing act.

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8 Responses

  1. I have to confess too that I feel a tinge when I question this “gift” of autism. As time goes on I wonder if Ben will no longer be remembered as the boy we watched regress into autism and become more fixed on the disorder. Ben is a gift, a wonderfully spirited boy that Im sure offers no more number of problems than any other kid down the block. Just different problems.

    Well with that in mind I decided on an experiment last weekend. Knowing all kids have temper tantrums I wondered if Ben’s tantrums could be self-controlled. In the past we have always reacted to end them and usually have had success calming him down within 30 minutes or so. Same problem but different right, what takes Johnny’s mom 10 minutes takes me 30. So what would happen if we do not intervene during a tantrum?

    Ben was watching a DVD, the DVD skipped, Ben blew-up, screaming, throwing things, I went to intervene and he hit me, I left the room and Erica started her way in, I stopped her. We sat, watched, listened for an hour as he went in and out of this firestorm of anger and frustration, he went into his room, picked up a few books, sniffling and wiping snot from his face he seemed to begin to calm down for real, then he started up again. Except for the few times we stepped in to make sure he was not in danger of being injured we simply observed and tugged at one another to keep out of it. Then we both got scared, Ben’s voice changed, he became so enraged he never once noticed us, pacing around the house slamming doors, turning things over, breaking a table in the process. We jumped in to get things calm again, it took nearly an hour after that. I’m still scared.

    momof3 you’ve met Ben, they can’t get much sweeter, a smart boy, loved and brings a smile to all those who meet him. As close as he is to falling from the diagnosis you would think he would be able to reset, to control his temper on his own but he simply can’t, I know this now, I’ve seen it.

    Is it a gift? Absolutely not. Autism is not welcome in my house, not for another second. It has to be controlled, tended to, when it shows up it needs immediate intervention, for the duration. Otherwise stuff gets broke.

    Is my son a gift? He is the perfect gift, I wouldn’t trade him for all the Little Johnnys in the world.

    There’s a picture of Ben, behind him is the autism.

  2. What My Son Has Taught Me

    When my son was diagnosed with autism there were a million things going through my head. One of the most prevalent was the thought that he would never be a normal boy and that all of my dreams had been wiped clean. I felt as though my little boy would never lead a “normal” life and that nothing good could ever come of this “autism”.

    That was 14 years ago. In those fourteen years I have learned many valuable lessons from my son. I would like to share some of them with you.

    My son has taught me compassion. I have eaten so many words that I should be full forever. I will never again look at a child having a meltdown in the store and think that he needs a good spanking or that his mother is not a very good mother. I will look into her weary eyes and try to convey my understanding. My son has taught me that.

    My son has taught me honesty. He never sees a good reason to lie. He is probably right. He will never break anyone’s heart, steal from another the things that they have worked so hard for, or get something that he doesn’t deserve. He won’t lie to protect himself from punishment or to get out of something. He will take the consequences of his actions because he simply doesn’t see that there is any other way to live. Truthful is the only way to be and my son has taught me that.

    My son has taught me tenacity. So many days I would like to just go back to the way that my life used to be. To not have to research, advocate, call, write, get to know my legislators, get to know my administrators, or fight one more battle. But, if I don’t, who will? Who will be the person that makes sure that he lives up to his fullest potential, if I don’t? My son has taught me to never quit.

    My son has taught me to be supportive. Before he was born I was happy keeping my house spotless, my garden weedless, and my life simple. Because of him I have learned the value of support. Giving and receiving. I have met wonderful people and I thank God every day that He brought us together. I constantly hear that God doesn’t give us more than we can bear. I believe that He does. I believe that He also gave us each other knowing that we would support each other and help each other get through this. He also was so wise as to give a scientist the idea that we would be needing Lexapro and that it needed to be developed.

    My son has taught be to be assertive. I had always believed that the experts knew everything and that we should blindly place our faith in them. I now know that is simply not true and that without questions there can never be any real answers. I have learned that we will never be given anything without making it available and that requires a lot of diligence and hard work. I have learned that we can put a man on the moon, but we can’t teach the engineer, that made the shuttle, social skills.

    My son has taught me charity. He is willing to give anything that he has to someone that has less. He would give his most prized possession to another child. He would move a homeless person into our home. He would give his food to a hungry person. My son has shown me how selfish I can be and what the true meaning of a giving heart is.

    My son has taught me love. He loves with no conditions. In his eyes, I am the most beautiful woman in the world. In his eyes I am the most intelligent person on the planet. In his heart, I am the best Mommy that God ever created. Our lives are not what we had expected. He will never be the president of the United States. He will never be the CEO of a Fortune 500 company. He will never be a lawyer or a doctor. In reality, I have no idea what his future holds. But, at night when I lay down beside him and look into that angelic face, I can’t imagine him any other way.

    By Sherri Tucker

    • I pray that in 10 years I will be at the same level of understanding as you are today. Love will get me there.

      Thanks for sharing, your son sounds like an excellent educator and a great kid. I guess Ill pay more attention in class to see what it is I can learn from my son. 🙂

  3. Wow! Good posts and good responses! Thanks for your insight to all of you! Time to share my favorite quote:

    Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.
    – Helen Keller

  4. I never thought of that this way .. good writing.

  5. Well, I didn’t read the post about autism being a gift. While I consider my son a gift, autism is pure hell and I wouldn’t wish it on anyone.

  6. Great post! Love the 95+Autism x 3!

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