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Category Archives: labels

Drugs – Off Label Use

08 Saturday Dec 2012

Posted by Ann Kilter in Asperger's syndrome, Autism, diagnosis, Disability, high functioning autism, labels

≈ 2 Comments

Tags

autism, drugs, Risperdol

Many parents of autistic children face the dilemma of whether to place their kids on drugs in order to modify behaviors that interfere with their safety and/or learning. Some of these drugs are are approved for children with autism, and some are prescribed “off label.” That is, the treating physician (in our case, psychiatrist) feels that the drug may help them, but it is not approved specifically for autism. It might be approved for ADHD or depression, but not autism (e.g., Ritalin). http://psychcentral.com/lib/2010/medications-for-autism/.

At the time that our children were being prescribed drugs for the purpose of improving their functioning (and the ability of other people to tolerate them), there  were very few “on label” drugs for children or adults with autism.

Our doctor’s motto seemed to be “trial and error.” Sometimes I would get the feeling that my kids were lab mice.

First it was Ritalin for both Will and Mary. Try the least harmful and most studied in children first. Then Mary’s teachers called me in a panic to tell me that with the Ritalin, Mary had even less language and was very tearful. No more drugs for her, I said. One of her therapists said that sometimes Ritalin had the effect of increasing autistic features, which could be diagnostic for kids with autism.

Ritalin didn’t help Will at all, so we were on to Wellbutrin for both Will and Patty.

Patty would put the pill in her mouth, then spit it out later. She said it made her feel funny. Smart girl.

Wellbutrin caused Will’s heart to beat too fast, so he was put on Effexor, which I gave him for years, because it seemed to be effective. When Will had the flu in 1995, he developed a secondary infection of bronchitis and our pediatrician put him on an antibiotic, which in combination with the Effexor, affected his liver. Then the psychiatrist told us to always get a flu shot for Will, since the Effexor was necessary…..due to Will’s autism.

Whenever Will experienced more symptoms of aggression, meltdowns, etc., we adjusted his drugs or tried something else. But when the doctor suggested that we try Risperdol, I struggled. Risperdol had been suggested for me (I have bipolar disorder) and I had already read the side effects and decided not to put it in my body. One of the side effects is Tardive dyskinesia…the development of ticks and involuntary movements which may not be reversible. I worked in a nursing home when I was going to college, and I know what Tardive dyskinesia looks like. That is all Will needed, I thought…something to make him more of a spectacle…something that might not be able to be reversed. After some soul searching and tears, I REFUSED to give him any more drugs, especially that one. The behaviors we were concerned with would have be dealt with some other, mechanical way. That is, through talking, charts, quiet rooms, etc.

Now I see that Risperdol has been approved for treatment of autistic behaviors. I have very mixed feelings about this. However, parents and doctors need to weigh the risks and benefits very carefully. I am not against drug therapy for autistic kids.  Effexor did help for a while, although we eventually chose to end Will’s drug therapy. I still take a drug for my own bipolar disorder because the risk of untreated bipolar disorder for me is greater than the risk of taking my medicine.

Parting the Waters

17 Wednesday Oct 2012

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism, Independence, labels, Support, Thankful, Transition issues

≈ 4 Comments

I have mostly retired from the role of Moses in my children’s lives.

After our kids were diagnosed with autism in 1995, we began to educate ourselves about autism. We also spent a lot of time educating those who were going to be responsible for the temporary care of our children. I printed reams of paper and passed them out to Sunday School teachers, girl scout leaders, family members, etc. (some must have seen me coming and run the other way). When we started going to a new church, we met with the Sunday School Superintendent / youth pastor to talk about our kids, and pass out more information about high functioning autism. We wanted to smooth the way before our kids. I didn’t want my son to get in trouble for something that was part and parcel of autism. I wanted to make things easier for him and for those who would take care of him. I was going before him, parting the waters.

At every IEPC (Individual Educational Planning Committee) meeting, I handed out new information for the team of therapists, teachers, and helpers assigned to our children. At first, they said our kids could not have autism, in part because high functioning autism was not as frequently diagnosed then.  Rain Man was the image most people had of autism. I even made a presentation to my son’s 5th grade classmates about autism (which mostly solved the problem with bullying in that class).

When my son entered middle school, we were very concerned with how he was going to handle the changes. He would be dealing with a much larger group of students on a daily basis. Instead of staying in the same place in his classroom, he would have to move from classroom to classroom, from teacher to teacher. This was a huge transition that was viewed with some trepidation by his teacher consultant, social worker, fifth grade teacher, speech therapist and me. So a few weeks before Will started the sixth grade, we had a big meeting with all of his 6th grade teachers in order to explain what it was going to be like to have him in their classes. We were trying to head off meltdowns. We were trying to make his way smoother before him, so to speak. To part the waters.

We had a meeting with his 7th grade teachers before 7th grade, and we had a meeting with his 8th grade teachers before 8th grade. We had one big meeting with his high school teachers before he started high school. Our school district was small, so most of them knew him or knew of him at that point. He was hard to miss. He was six feet tall at the beginning of sixth grade, lanky, loud, and awkward. And smart. And gifted. I didn’t want them to miss that, either.

One of the important things about being a special education parent is that we are so very involved with our children’s education. From 1992 onward, I attended an IEPC meeting for each of my three children at least once a year (three meetings a year), plus every three years, a special meeting for Michigan testing requirements to see if they still qualified for special education services. (MET). These meetings included their teacher, an administrator, the speech therapist, the occupational therapist, the teacher consultant, the social worker, and toward the end, a transition specialist. This was  in addition to any parent-teacher conferences.

Our role in parting the water for our kids was encouraged and even demanded of us. I was an advocate for my kids all the way through high school, and I was applauded for my efforts (and no doubt sometimes complained about).

However, almost from the beginning, our long-term goal has been independent living for our kids. We won’t always be able to care for them. From early on, we talked about college, their future jobs, and their own apartments. When my daughter was ten, she announced that she shouldn’t have to sweep because she wasn’t very good at it, I said, “Then you need to practice, so that you can do it when you get your own apartment.” Not if, but when. Brainwashing is a strategy.

In 2001, I decided to go back to school to become a legal secretary. I said to them, “I need something to do when you guys don’t need me anymore.” I studied for three years, modeling college level effort.

It is not easy to relinquish the role of Moses.

My oldest daughter, who is the most impaired, received bus training, rode the bus from downtown to Davenport University five days a week for a year, and rode the bus with her brother for over a year. Then one day none of us could take her to a meeting downtown. She said, “I can get on the bus and take myself there,” as if it was the most natural thing in the world. I didn’t want to let her go, but my husband said that I had to, for her sake and for mine. She did very well, and has ridden the bus independently several times since then.

Their transition to independence has also been my transition to bystander, to cheerleader, to listener, to mentor. As they get older, I can’t go before them and prepare the way. I can’t protect them always. And I also have some plans for my retirement. I plan to write a book or two,  to volunteer, and to spend time with my husband and their father exploring new hobbies or going camping together by ourselves. Retirement has benefits.

Wings

21 Saturday Apr 2012

Posted by Ann Kilter in Autism, diagnosis, high functioning autism, Independence, labels, Miracles, Thankful, Transition issues

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Tags

aspergar's syndrome, autism, high functioning autism, independent living, work

One morning a few days before graduation from college, I dreamed I was a fledgling black bird, and I was running around chasing my parents (who were birds, too) trying to get food from them. I woke at that moment, but that picture has remained with me all these years.

Tomorrow I will be going with my son to help him look for temporary, economy housing in a city that is too far to commute to easily. He is starting his first post-college job.

The ship is venturing out of the harbor. And taking all sorts of flotsam and jetsam with him. Valuable (to him) clutter is going out to the car. This works better than my annual spring purge of unused stuff. (I always give up before my house is completely purged.)

“Mom, you don’t use this little crock pot, do you? How about this lamp? Here are some pans you never use.” “Nobody is using that printer – I could take that?”

His dad says, “Don’t take all the socks!” I say, “Make sure you take some towels and hand towels. Look in the cupboard and take some food.”

This is an entirely different from sending my daughter to college a few years ago. She wanted cute new stuff for her dorm room to set up a bedroom in a new place. She didn’t mind spending money (our money) to do so. My son is setting up house, and he wants to spend as little as possible. He is happy to take some of the items I no longer use.

College involves wings with tethers. Setting up house in another city is taking the training wheels off.

The Big Talk

12 Monday Mar 2012

Posted by Ann Kilter in Asperger's syndrome, Autism, high functioning autism, Independence, labels, Transition issues

≈ 2 Comments

Tags

asperger's syndrome, high functioning autism, independent living, labels, transition

In the world of Autism Spectrum Disorder (ASD), labels opened the door to services such as social work, speech therapy, quiet rooms, therapeutic horseback riding, one-on-one swimming lessons, etc. At some point, however, the label is not just a topic of discussion and planning among parents, teachers, and therapists. In Michigan, the student is invited to at least part of the Educational Planning meetings beginning in middle school, or at the latest, high school. This is the beginning of the transition process to self-care, to self-advocacy, to independent living.

Eventually you do have to have the “big talk” and I am not talking about the birds and the bees (although that is another delicate issue). We had to tell our kids that they are autistic. When I had the big talk with my children, my oldest daughter accepted it readily, but then she was in an autism classroom (partially mainstreamed). My son felt bad about it, but eventually came to accept it. My youngest daughter was angry and mad about it – and has not and will never accept it (her words). Even though she needed speech therapy, she made the visits with the speech therapists miserable. We finally had to pull her out of speech therapy because of her attitude. Admittedly, she has fewer autistic traits and more typical teenage traits as a trade off. She is more neurotypical than her sister and brother. She is aware of the world around her and other people. On the other hand, her attitudes can be off putting, and she seems tone deaf as to how she sounds to other people.

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