Anyone who knows our family knows about our journey with our son Benjamin. If you read some of my past blog entries you can get a feel for the journey we have taken over the past 10 years in getting him properly diagnosed.
To those that have a child with Asperger's Syndrome, they know that it's on the Autism Spectrum. It a high functioning disorder that effects a child's social behavior the most. But in it's early stages it presents itself as behavioral and leaves even the professionals not knowing what could possibly be wrong with your child. There are no medical tests that can be performed, just questionnaire's, social and academic testing and observances that is used to determine if a child is on the spectrum. So when a child is very young these test cannot be preformed, and so you will likely be told a variety of different things to explain your child's behavior. At first your doctor will just brush it off as the terrible twos, perhaps blaming teething or other environmental reason for your child's unsettled behavior, he is healthy and making all the milestones a child needs to make, so there is no need to worry, just a phase they will out grow.
Once your child starts school and they do not want to participate in group discussions or activities, or cannot seem to pay attention to subjects that do not interest them. They will be called lazy, or even disruptive, doesn't take direction well. They will get in trouble for refusing to stay in line, or wait their turn. Cannot play well with others, prefers to be alone, over reacts when doesn't get his way.
This begins the phase when your child is called ADD or ADHD or ODD. With this period there are decisions to be made that very hard. You will be strongly encouraged to seek medical help, and also referred to services in the area that can help you cope with the stress of raising a child with high needs. We were strongly encouraged to medicate our child by the school system. At this point we were in grade 1, and Ben was causing such disruption in class that I was being called on a weekly sometime daily basis, to come to the school to help calm him down or to just bring him home. He was enrolled in all school programs to help children with high needs. STEPS was one that teaches children to make well thought out decisions when dealing with conflict among peers, and how to play with others and how to use your words not hands. He was also included in a morning group the school called the SUPER HEROS group, where the children where given a chance to calm down in a quiet setting with other students by talking about how they were feeling or the goings on of the morning. This was done before students continued on with the day in their regular classrooms with hopes of giving the children time and space to calm. All these efforts proved to help little in his behavior.
During this stage we also saw him dwelling on topics of interests for an extended period of time, and asking lots of questions about that topic. We had the school physiologist visit Ben weekly because there were concerns of his obsessions regarding death, as his grandmother had passed away and as this was a new experience for him, he thought about it a lot.
We also had the local child services group involved, we had a weekly visit by a case worker that would come into our home to provide support to Ben and myself. Giving me tips on how to deal with his outburst of frustration and anger. The psychologist from this facility also interviewed Ben, and determined in her opinion that he was dealing with Depression. She felt that he struggled with low self esteem but that this would likely pass as he grew up.
We felt our life was spinning out of control. Not knowing what to do next, and having exhausted all avenues of help and support. We decided to try medication, hoping for some relief from his outbursts and unreasonable behavior. The school also said that they would not be responsible for the quality of his education should we choose not to medicate, as we were not bringing our child to school in a state that was open to learning. I felt that was a unfair statement to make, however I thought long and hard and understood the root of that statement, I knew that it was true. So this began our long and continuing medication trial and error process. And to be honest of all the medications he has tried and we have had to stop because of side effects, the only one he has been on that has helped with little side effects is STRATTERA. It has provided the relief we needed from the outrageous behaviors that would cause such stress on the family. It calmed him, and he became more manageable. And allowed him to be able to function at school with fewer disruptions. However, that being said, we still saw other behaviors now surface that we could not see before because of the behavioral problems.
As a mother you know your child, and I knew that there was always a missing piece to the puzzle when it came to Ben. He exhibited behaviors that could not be explained by the ADHD diagnoses. He was obsessive, explosive, avoided groups, had sensitivities to specific clothing items, food items and how they were cooked, and excelled in technology.
Examples of these behaviors starting from 10 months...He would cry explosively as a baby for no reason and nothing would sooth him, he would throw his body into furniture or the wall, he was obsessed with his ties and rubber balls and had to wear and hold them at all times. He excelled at video games and always has. He avoids groups and always was reported to be playing alone at school, and if he did play with others there were always problems. There has always been a concern in how he speaks to adults, he doesn't look at adults in the eye. He takes all that is said very literal, and rarely laughs at jokes. He controls all situations to the way he feels comfortable or he will not participate. He shows sensory sensitivities with socks...if they don't "feel" right he will not wear them. If his mattress isn't "feeling right" he will change beds or even sleep on the floor if that is what feels right to him. He avoids situations when there is a boy that he isn't familiar with. He also has no fear or thought out plans when he plays, he often does things that are dangerous and impulsive, all because he feels like it, so he does it. He also shows a lot of anxiety that comes out in the form of ticks. The source of this is unknown.
So with all this evidence and more, I sought out a new pediatrician, was then referred to another psychologist and finally I received the diagnoses we had been needing. It explains so much about Ben. It will never change who he is, nor is there a cure for it. But it has led to better understanding, and has opened up a whole new avenue of help from the school and social system. We receive funding from the government under a disability tax credit and monthly allowance, and we also have a new Occupational Therapist that will be working with Ben for up to a year through the school!.
So in writing this long post I hope that it might help someone out there that is starting out this same journey. Knowing that you are not alone in this, somehow helps. Above all I encourage all parents that have a high needs child, to advocate for your child because they cannot for themselves. If you do not they will never get the help they need. Above all recognize that your child has a disability, its hard to do, but once you accept this the sooner they can get the needed help. Telling yourself that he or she is just a little bit eccentric or making excuses for their odd behavior isn't helping your child. I found this the hardest thing to do. But once you do, it really makes such a difference in how you feel about yourself, and your child.
