I was a young single mother in my first year of college when my son was first diagnosed with autism. The first half of my semester had not gone well. The increasing level of care for Jonathan at day care and at home had made little time for study. My grades have begun to slip and I had a difficult time explaining to my professors that my lack of participation had been due to some rather extraordinary circumstances. The diagnosis of autism made explaining things a little bit easier, however few of my professors were understanding to the unusual circumstances that I now faced. While some would give the extensions on some of my assignments there were some that simply didn't care. One professor explained that while she felt sorry for me that I should expect no sympathy from her, it was not her problem.
Things were not much better at home either. Johnson's increasingly wild fits of rage were being heard through the paper thin walls of my apartment. While the superintendent was sympathetic to my situation, my neighbors were not. It was not much longer before I receive my third and final notice forcing me to leave my apartment. Finding a new apartment was not easy. I had to find a place where Jonathan would not have the ability to disturb other people when he got upset. Not wanting to face another eviction I rented our basement apartment on a quiet street. While the apartment was nice it meant a much further drive to work, to school and to Jonathan's day care. Not to mention having to move was rather expensive.
In order to accommodate Jonathan the day care had to hire extra care to handle Jonathan's very high needs. Jonathan would have a break down of some sort almost every single day. If he wasn't trying to hurt another child he was screaming, kicking or trying of trying to hurt himself. It was very rare for Jonathan to have a good day at day care. Johnson was constantly wound up and he rarely slept making it difficult for me to get any sleep at all.
I found more and more that not only did my marks at schools suffer but so did my social life. Most of my friends at school didn't have children never mind a child with special needs. It was very difficult to find a babysitter could handle caring for Jonathan. Many baby sitters who watched Jonathan would only do so one or two times before quitting. The responsibility of caring for Jonathan was so great that it was simply too much for the average sitter to handle. More and more I found myself alone. After my first year of college I realized then returning would be next to impossible.
I found I was stuck between two worlds. I didn't quite fit in with the college crowd and it didn't really fit in with the parents of special needs children either. Many of the parents that I met were much older than I was and they where also married.
I spent a lot of time meeting with professionals that first year and putting Jonathan on endless waiting for lists for speech therapy and behavior assessment. There were many tests done by child psychologists and other therapists trying to determine what level Jonathan was at mentally and physically.
When he was four years old they found he was at the level of a child of 18 months old. His fine and gross motor skills were way behind and he had almost no hand eye coordination. He was completely nonverbal and often resorted to pointing and screaming to communicate his needs. His level of energy was off the chart. It was nearly impossible to get any kind of rest. He had to be watched the all times, locks had to be installed on the inside of the front and back doors to keep him from escaping and running way. Jonathan had no sense of danger whatsoever.
It was about this time the my boyfriend and I decided to get married. We had started dating shortly after my first year of college. We had a daughter together and decided that getting married would be the next step. Unfortunately, our marriage was far from picture perfect. As it turned out my husband suffered from depression and was somewhat bipolar. With the added stress of an abusive marriage, a second child and unbelievable financial stress I felt like the walls were closing in.
Then I got a ray of hope. A therapy that I had read about and was only available in the United States was finally coming to Canada. It was called IBI, short for Intensive Behavioral Intervention. The therapy was designed to target many of jonathan's problem areas such as behavior and speech. I got Jonathan signed up and on the list right away. Because the therapy was so new it took some time for them to train people to administer the therapy to children in our area.
When Johnson first started the therapy it was a difficult road. He started out with two therapists in the room with him at the same time. It was necessary to have two therapist because of Jonathan's severe and violent reactions to the therapy. The door had to be locked in order to keep Jonathan from escaping his teachers. His first lesson was simple. He was asked to sit on a chair and when he complied he would be rewarded. The idea of this lesson was to teach him that by doing what he was asked he would receive something in return. After a couple months only one therapist was needed and Jonathan begin to progress successfully through the program.
The therapist worked on many issues, such as potty training, which Johnson had not yet mastered, speech and behavior. Johnson improved in these areas immensely however his speech was very far behind. It was almost impossible to get him to use words for a request. One day I decided to bring home a kitten. It had been years since I had a pet of any kind and I thought it was hard time. What I found so incredibly shocking was johnson's interest in the cat. He loved the cat so much that he began to talk to it. It was not alone before he started talking to everyone else.
Unfortunately because of johnson's age (he was five) he was only able to receive IBI for one year. However, he did start school. I put him in Sr. kindergarten two days a week to start. An EA was hired to work with Jonathan every day at school. The first few years school was incredibly difficult for Jonathan and for me. There were many days were I had to go and pick him up because he had harmed another student or teacher. There was one incident where it took five teachers to bring him back to his classroom. Because of his violent and unpredictable behavior Jonathan had to be kept in a small classroom alone and away from other students. It was the only way to keep everyone involved safe. There were days when I was almost afraid to answer the phone for fear of what he had done at school. Even riding the bus was difficult. For the first few years Jonathan had to be strapped into his seat with a thick harness that went over his chest so he could not get out of his seat and harm others or bus driver.
When Johnson was eight my marriage ended. However, this was a happy time for us. My marriage had been horrible and abusive. We now had a freedom that we had not known in a very long time. We spent the summer doing all the things that we had missed out on was married to my husband. I've started working at a drive in/amusement park and with that job king free movies and free rides. We watched a lot of movies that summer.
As time when on jonathan's fits at school became far less frequent. He was able to start spending more time with other children with at the same worries as we had before. He became more social, initiating conversations with others something that he did not done before. His behavior was still a big problem. There still so many days where I had to pick him up from school because he had flipped out of gear. But it was better than before. Jonathan appeared to be on the right road.
By the time Johnson was eleven he was being considered as high functioning autistic. He could no longer be considered a severely autistic. He'd found the ability to better adapt to the world around him. His motor skills have improved dramatically and he learned and hand eye coordination. This gave him the ability to use the computer at school. While his reading and writing was very poor he was able to write short stories on the computer using a program called writing with symbols.
That summer eye to the leap of faith and son Jonathan to YMCA summer day camp. In recent years I had sent Jonathan to a specialized camp for children with special needs. However they could no longer meet Jonathan's needs. He had developed to a piont where he no longer needed such a high level of care.
That summer Jonathan absolutely blossomed. He came right out of the shell and forged many new friendships with the children and counselors. He returned to school at September and new young man. This school season I've only had to pick up Jonathan once. He has achieved and excelled beyond what anyone could imagine. He plays as laptop almost every day and has recently taken an incredible interest in playing Nintendo DS. Jonathan is now 13. He rides the bus on his own, getting on and all without any supervision. He runs errands around school and receives rewards for his accomplishments. He takes care of the school garden and help students and library. He has become out going, funny, social, helpful and unique.
I never thought that I would see the day when Johnson would do so well. Even though Jonathan has accomplished so much he still has a long way to go. There are times when he breaks down over the smallest detail. He still cannot read and write but has learned to navigate the Internet despite his illiteracy. Each day is a new challenge but he greets it with a smile. He never gives up and neither do I. My hope is that one day he will become independent enough to possibly live on its own with help. With all that Johnson has accomplished I can see that being a very real possibility in the future. For now we will continue to travel this road for it is the journey not the destination that is important.