Parenting a teen with Autism

While I have so far stayed true to the theme of this blog, finding the balance between the male and female energies in life, today I find the need to share some challenges. My efforts to remain positive and to “let go” have been greatly undermined by recent changes in my son’s behavior and the absolute helplessness I sometimes feel. It is truly a minute by minute situation and I am restarting constantly.

jason102012My son Jason is 19 years old and was diagnosed with Severe Autism at age 2. Through the years we have woven our way through all of the various treatments, cures, therapies, etc. with subtle effect and improvements along the way.  Being my fourth child and only boy, Jason has been an adventure and a learning process in many ways. Therapies and medications have been adjusted based on his hormonal changes and natural maturation process.

I would place Jason’s emotional level at about a two year old, his verbal communication about the same, his comprehension maybe younger (as far as we can detect) and his physical, intellectual and cognitive probably close to normal. This presents a unique condition of constantly opposing forces in his mood, social interaction and ability to comply with life’s demands.

During the past few years he has been taking Risperdal, an anti-psychotic drug that has been effective for some children with Autism in suppressing the behaviors associated with the condition. We have always trusted his health care professional’s guidance on this, but I have had periods of doubt about it quite often, including the fact that Risperdal has side effects that are the same as the behaviors it is supposedly easing.

Since my son is attending a school about forty-five minutes away from my home (and the only program in our area that suited his needs) he lives with his dad during the week. We made this decision when we separated due to the fact that my three daughters were attending school where we were living at the time (and where I still live today). I had to choose between removing my son from the school he was attending or moving the girls to where he was and taking them out of the school they were attending.  Agonizing decision, but looking back we made a good choice.

Recently Jason’s issues with self-injury and mood swings have increased. When he switched doctors from a pediatrician to an adult family medicine physician, the new doctor and Jason’s dad decided to wean him off of his Risperdal to see where he was with normal behaviors. That was as few weeks ago. Now, I have always wanted to take him off of medication and try other therapies, even natural herbs or remedies, but his father has been opposed to any suggestions I’ve made. He was never argumentative, just would change the subject and refuse to discuss or engage. It was frustrating. So when I was told that we were taking him off the medication I was pleased. I expected great things. We have been sadly disappointed so far.

Last week was the first full week without the medication. He started summer school and beat himself so badly in the face the moment his dad dropped him off that the teacher came running out to stop the car. When Jason came to my house on that Friday, his eye and cheek were swollen and blue, his jaw and temple area on the other side of his face was swollen making his face round and odd looking. He could hardly open his mouth due to the pain and swelling in his jaw.

He has been self injurious for many years now. He started out banging his head against the walls so hard that he put holes in them. One time he hit his head on the brick wall in the backyard and his head swelled so big it made him look like a space alien. Then he stopped banging his head and moved to banging his elbows. The joints would swell so much with fluid that they had to be drained quite often with a giant needle. He stopped doing that for a while then started hitting his feet and hands on the tables or door jams. This subsided and suddenly he began hitting himself in the face. Now he is literally punching himself with his knuckles in the face.  I have video of him in action and we have school records documenting this as well.

Yesterday I picked him up after work and brought him home. He seemed distant and agitated, but that was interspersed with smiles and affection toward me. His eye contact was nearly non existent, though he tried. His stemming and ticks were triple the norm and he seems extremely anxious. I felt like I was losing him. I started cooking his favorite dinner, and he kept asking to eat it. After I explained several times that it had to cook he suddenly started crying and when I asked what was wrong he jumped up and started hitting himself rapidly in the forehead. I tried to console him, calm him and eventually tried to grab his wrists to stop him but he overpowered me, pushed me away and ran to his room.

I quickly started a bubble bath and finally distracted him enough to get him to calm down and get into the bath. He stayed in the bath while dinner cooked and seemed relaxed. When he sat down to eat I noticed that he hardly opened his mouth more than an inch and had difficulty getting the food on his fork into his mouth. I spoke with his step mom about it and she told me she had been worried about the same thing but they had X-rays taken and the jaw seemed to be swollen but not damaged. That was a relief. Normally Jason would have jumped up from devouring his first serving and helped himself to seconds, but not this time. I offered him one of his favorite desserts and he ate less than half and set it down. Most of it ended up dripping down his chest anyway because he couldn’t open his mouth enough for the spoon.

After cleaning him up I gave him a Melatonin to help him sleep and put him to bed. He slept peacefully through the night and woke this morning about 6:30.

He would not eat any breakfast but seems to be in a better mood. I gave him a pain reliever just in case his jaw is hurting. When he refused to eat I asked if he hurt anywhere. He said, “Yes,” and when I asked where he grabbed his jaw. Just now, as I am writing this Jason came to me smiling and initiated our little “shave and a haircut” sound exchange. I asked if he is hungry and he said “Yes.” He requested chicken nuggets and I quickly complied. He is sitting on the couch now rocking to the music on his mp3 player waiting for his breakfast to cook.

When I talked with his step mom she mentioned that they will be taking Jason to a specialist in the next week or so to evaluate the next course in treating his behaviors. She and I discussed the medication options and agreed that an anti-anxiety drug like Lexapro may be a better answer.

With all of this disruption in our normally peace filled existence, I find myself searching for some grounding. I am constantly reminded that the greatest thing I can do for my child is love him. All of the other things are physical remedies for a biological condition. The deeper part of Jason just needs to be loved unconditionally and that I can do with ease. I know that the true nature of my son goes deeper than this physical manifestation of a person with Autism, he is a Divine being expressing himself in his own way. We are all learning as we go.

 

4 Comments

  1. Anonymous

    June 29, 2013 at 10:34 am

    Collin also takes Risperdal and a few years ago we tried switching the medication. What a mistake that was. I hope things get better for Jason.

  2. Aani

    June 29, 2013 at 10:55 am

    Well whatever I say will probably be laughable to you and I mean well. I have read that autism patients are very smart people but cannot articulate or express themselves. Have you ever considered past life therapy or a drastic change of diet (shift over a little at a time)? Some of those pharmaceuticals sound pretty hard core to me. The only reason I brought this up because it sounds like you were thinking of alternative methods and I truly believe in them…

  3. argosaries

    June 29, 2013 at 11:16 am

    Fantastic piece. Though the content is personal and heart wrenching, it is well written and sheds so much light on the transition from teen to adult for those with autism…especially severely affected individuals. Thank you for sharing this emotional story. Your love for your son is the best medicine by far.

  4. Lauren

    June 29, 2013 at 2:17 pm

    This breaks my heart to read, but it is such an important article. Keep up the good work and your loving and determined outlook. He is lucky to have you as a mom.

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