His journey is a difficult one and the changes that have happened to him in the last year are intense. We have struggled for years with trying to help him with his social interactions. He is incredibly social and friendly one-on-one and never fails to make an impression. He has an incredible smile and puts so much energy into reading facial expressions and responding to adults he makes you feel incredibly important and loved just by saying "Hi, how are you?" He can be a little overwhelming for age-mates.
Over the years we've tried lots of therapies even as we've struggled to get a comprehensive diagnosis and plan for his future. Play therapy, Occupational Therapy, neurofeedback, counseling with both social workers and psychologists, speech and social language groups, group therapy, extended school year, etc. He is complex and contradictory, with emotions way too big for his body, but apparently the Autism Spectrum has a spot for him. Asperger's Syndrome is different for everyone, but I highly recommend Be Different by John Elder Robison. Also Autism Everyday by Alyson Beytien for a practical approach to dealing with daily issues without getting too technical. Next up on my reading list are Freaks, Geeks and Asperger's and Pretending to Be Normal. There are so many more books out there now than there used to be on AS, and lots of controversy with the changes in diagnostic guidelines, but these two are wonderful. Especially for us, getting started with older kids (Dolly is newly diagnosed with Asperger's at age 12 and My Favorite Alien has self-diagnosed as we've gone through interviews, ratings scales and checklists for the kids' diagnostic process).
Last summer Caveman was taking two different anxiety medications, a non-stimulant ADHD med and a mood stabilizer. His doctor at the time was absolutely convinced he was medicating appropriately, but we felt that the combination was too much and the meds were working against each other. Each had worked well initially and then gradually lost effectiveness, but he still had very wild mood swings and some episodes of violent rage. Looking back it seems obvious, but at the time things were changing so gradually it was hard to see the pattern. As fall passed, he was becoming more depressed and self-destructive, more frustrated and angry. He was defiant and obstructive to any plan that wasn't his origination. It was painful to address any conversation to him, because an angry, defiant retort would come back and a long argument would ensue for any small direction. He was filled with rage and severely depressed, and talked about hurting himself.
In early December he went to school and told his teachers we had beaten him. We had restrained him, because he had been flinging himself against the wall repeatedly, less than two feet from a window on one side and the Christmas tree covered in glass ornaments on the other. It was a horrible episode, but in no way a beating. The school knew him and us well enough to alert us that they were calling family services. We called his psychiatrist and he advised immediate hospitalization.
The last week and a half before school got out for Christmas, Caveman was in the hospital behavioral unit. There are options for adolescents, but for pediatric patients, there are very few, so he was a full hour away. I had just started back to work, at two holiday retail positions. The Monkey was having a birthday in just four days. We were working really hard on keeping Christmas on-budget. It was horrible.
Both of my "new" jobs flexed enough that we could go and visit him on the very strict schedule-1 hour drive up, 1 hour of visit, if we were on time, and 1 hour drive home...without him. The Alien's job gave him almost a month of combined work from home and time off so we didn't have to "farm out" the Dolly and the Monkey. The church helped with groceries and friends made meals and hugged me when I cried. I cried a lot. I screamed sometimes. I cried a lot more.
Caveman didn't make progress. More and more meds, hours of different therapies, nothing was making a difference, much. The general consensus was that his anxieties about being in the hospital were making it too difficult for the therapies to help. After a few days, a different psychiatrist came in for the holidays, and he was more receptive to taking meds AWAY instead of just adding more. And things started to get better. Not quickly, and he moved to the half-day program without really having made much progress. And even there, he was still having severe difficulties some days. They once had to put him into a padded isolation room to stop his physical outburst...then had to go in and pull him away from the window he was trying to break. Gradually the medications made their way out of his system and a message got through-if you're good enough at following the program, you get to STAY HOME. His last three days were picture-perfect and he came home to stay the weekend before school started back up.
Oh K, the biggest of hugs to you and your family. I relate oh so well to this post. I have seen the AS battle since my oldest was 2. In our house there are two parents who are semi self diagnoised and 2 kids now 17 and 19. Parental history on both sides was a huge part of the getting the dx for the kids. Some of us in our home are in total denial about the AS. My father related to the AS in himself and was the one who first told me about it so I could take the possiblities to my son's doctors to get the dx for my son. We started out with ADHD dxes for me, (1978) and the two kids, both at 3 1/2. I know that I had a horrid time with social interaction..desperate to make friends and be included by older sibling and cousins who found me annoying. I had numerous meltdowns and was a difficult child for my wonderful mother who always loved me and was my greatest champion.
ReplyDeleteMy son's numerous problems came to a breaking point when he was sixth grade when he had a complete nervous breakdown and entered a severe depression and regression in schoolwork, going from gifted sixth grader back to 4th grade and lower abilities. We were able to avoid the hospitalizations you dealt with but we had 5 years of my acting as a para for my son in a program that combined homeschooling and classroom instruction. For at least two years I spent more time in my son's classroom than he did cause he was so unable to cope with being around other people or the many issues that middle school was for him.
I came across a statement in one of the AS books I read that a lot of AS kids are about 2/3 their real age when it comes to emotional and mental issues. Hence the six year old acts 4, the 19 year old is about fifteen and so on. For us that has been the best strategy for dealing with our son on so many issues. We have high realistic expectations for him based on his emotional age and not the real age. So many of our greatest battles came from when we have or others have disregarded the 2/3s rule. Along with AS, depression and anxiety for him has come major food allergies, throat strictures and surgeries to fix it and a dx of fibromylagia as a teenager.
My daughter is one of the family deniers and her attitude to AS is so much of who she is...it has made her stubborn and determined to not ever be labelled in any way. It meant that she has resented a lot of the decisions we made for her based on the suggestions of doctors and teachers. She didn't want to be put on any medicine so she worked extra hard to keep her grades up, learn to modify her behaviors and learn self control and time management. It was hard as a parent to have a child who is determined to prove you wrong on all accounts, but she has for the most part...Honor Society member 3 years, seminary and school attendance almost perfect, and a good reputation as a hard worker.
For me learning about AS explained my parents, their relationship and so much about my life. One book that I think saved my marriage at one point was Loving Mr. Spock: Understanding An Aloof Lover by Barbara Jacob. It helped me realize certain things that drove me crazy about my husband were never going to change cause they were distinct things that went with AS...some people would call them disablities I tend to think of them as the quirks of personalities.
Just thought it help to know that your's isn't the only family ruled at times by the oh so wonderful adventure in life that AS is. The kids' doctor when she agreed that this is what we were dealing with told me that you could have a roomful of Asperger's and not one would be experiencing AS like the others. I like to think about ASD not as a spectrum but as a lite brite picture. Everyone has different quirks that makes up their own individual picture but the problems come from varying degrees of certain areas (sensory, mental, emotional, medical, prefrential, learning difficulties, social issues, and attitude) that are the colors that are used.
Here's to beautiful lite-brite pictures.