I really need to share this story and it's in hopes someone else finds it enlightening or helpful....I know there are a lot of other people out there who have 'difficult' kids and get the third degree from teachers, relatives and friends. Here's my story, how my family worked through two huge challenges, the symptoms, the diagnoses and the practical tasks that helped us:
My son with autism-My oldest son was an angel at home, quiet, loved to draw and from a yound age would spend hours drawing and painting. I thought he was just very laid back...until I put him into prechool at three years old. Everyday I was getting cornered by the teachers about his behavior; biting, scratching, 'defiance' from the teachers and classroom rules. I was going through a bad divorce and immediately blamed my personal stress for my son's outbursts. Over a two year period, I was under constant stress, my son never wanted to leave home and there were meltdowns of screaming and crying just over going to school. Several professionals had told me there was 'something' going on with my son. Those are the scariest words a parent could hear!
I was in denial until my son was kicked out of a daycare. I decided to go to therapy with him-a child therapist to help him work through whatever was distressing him. We were fortunate to get in with a very gifted child therapist-a woman. Within three sessions she said to me"has anyone ever talked to you about sensory issues?" No, that was the first time I had ever heard of sensory issues. She gave me a symptom questionaire to fill out, I couldn't believe what I was seeing:
My son's 'symptoms' which I never knew were symptoms, he was my first child, I was young and I just thought every kid was like this: he hated the feeling of sand or grass against his skin, he couldn't stand bright sunlight, when people clapped he covered his ears, he would say 'ouch' if I brushed his hair...
Then I started to realize, when my son was born he did not make eye contact with me for three weeks. The counselor very gently told me that my son might be best described as having aspergers syndrome or highly functioning autism. I think I went into a daze for about a week. The therapist asked me if I wanted my son officially diagnosed, the benefits being getting assistance in school the down side being people's judgemental attitudes. I decided on an official evaluation, because of my divorce I felt that my son's caregivers when he was away from me needed to know how to care for him.
My son was diagnosed by a leading child psychiatrist as having aspergers syndrome, ADHD symptoms, obsessive compulsive disorder and depressive disorder...After doing a lot of research I realized that some of the most successful people in our society were or are asperger's people. they have the capacity to focus so intensly on one topic that they master it in a way us 'normal' people cannot. But my son was going to need help to get to a place where he could go to school and function in society. We underwent 9 months of behavioral therapy with our counsleor and added adderall as medication intervention to help him control his impulsive behavior.
The therapist helped us to see that we needed to pay attention when meltdown's happened -what preceeded them. We had to keep the lights low in our house, low noise, low stimulation. It was really important (oddly enough) to keep the house picked up, clean open spaces for my son to live in-without too much to process. Happily he blossomed. He now approaches other children and asks them to play (before he would not even be engaged by them if they spoke to them), he has overcome his defecit in academics math and reading and is now ahead of his grade. He still obsesses over star wars and acts like Monk (from the tv show) but I find his uniqueness endearing. I know that he will be successful even if he has to live nearby me for a long time.
My son with developmental delays-Then I had another son, he was born at 32 weeks only weighing a pound and a half. He had no body fat. I had a severe prenatal disease which caused growth restriction in him. My Dr told me at 27 weeks gestation I should consider going out to colarado and having a late term abortion since they did not know if my son would live. My husband and I happily, decided against this. When my son was born he was perfectly healthy other than his weight.
When my son turned 3 we really began to notice some extreme problems with his behavior. He was loud, yelling all the time, he would scream at the sound of an airplane or truck and cling to me, he didn't sleep at night and constantly sought out risky behaviors like climbing the television, jumping off the top of his dresser and oddly he hated being picked up or having his head tilted to the left or right-this would also send him screaming. Well, if my first son challeneged me, my second one floored me completely. I got reported to cps for one of my son's injuries -I was mortified. He was constantly injuring himself and I couldn't seem to control him. I put baby gates everywhere and he would climb them or break them in half (he broke a wooden gate down the middle, his peculiar strength is explained later). He also insisted on being naked (just diaper) all the time.
People said to me, maybe he's autistic. He wasn't speaking very well. But I just knew that was not the case, he had good eye contact (autistic people cannot stand to make eye contact for very long, if at all) and he was a social kid, he could play well with others, he just couldn't be controlled at home....we found a good pediatrician who first of all put my son on benedryl every night to help him sleep and she found a cribtent for us-a mesh structure that attaches over the cribe to keep your child inside. That was a Godsend, this stopped my son from getting out of bed in the middle of the night while I was asleep. She next perscribed occupational therapy and speech therapy. Through my son's OT he was diagnosed as having severe vestibular, auditory, and speech delays as a result of his premature birth.
These diagnoses explained an extreme spatial disorientation best described as how a pilot without a natural horizon would feel. This explained why my son was always doing risky things-he literally didn't know where the ground was or his own center of gravity-thus the avoidance of tilting his head. He had a lot of strength because he interpreted the world through touch and developed his muscle groups early. His therapist put my son into what is called astronaut training, and cd therapy. Each week his vestibular and auditory systems are stimulated to the point that he cannot avoid paying attention to them and processing the information. After three months of therapy my son has stopped screaming at loud noises and is sleeping through the night, and is wearing clothes! His behavior has become so much more controllable. The commonality with autism is that autistic children have many of the same delays or may never develop these systems completely.
Interestingly our child counselor told us the same thing with these delays as with autism-keep the stimulation at home minimal, low lights, soft sounds, and keep the house picked up clutter free (this actually helps a lot).
Finally-I hope these stories are helpful to other parents. It makes me sad to see parents who are challenged and don't know where to turn. Everyone around you assumes you are not parenting correctly or that it's a discipline problem ....argh! Anyone who has a child with sensory issues, delays or impulsive behaviors knows as well as I do, that you could be the parent of the year and still not know how to handle one of these children. They need professional intervention and as parents we have the huge challenge of learning to see the world the way our children do. Please feel free to share any stories or tips that you have found helpful in dealing with similar situations. Thanks!