Please bear with me as I go back in time just a few months. I took Grace to see Dr. G. in October of 2007 and brought with me a long list of concerns. She sat patiently with me for over an hour in her office listening and responding as I went through my list line by line. It was a tedious process. She agreed that we were on the right track and that something was indeed amiss with Gracie. She gave Grace her initial referral for Sensory Integration Therapy and speech therapy. She also suggested I contact the Early Intervention clinic to have her evaluated. At this time Grace was 3 years and 9 months old - just over a year older than when the behavior had started.
We threw ourselves into Grace's OT and speech therapy. Grace attended at least three times per week in a combination of the two. We also began her gluten free diet. Both changes resulted in some improvement in her behavior. I first contacted the Early Intervention program (The Alyce Hatch Center here in Bend, Oregon) in winter of 2008. I was hopeful that they would be able to identify the problem that we were struggling with and provide us with some form of treatment. We were currently paying for Grace's treatment using our insurance. However, our copays were adding up quickly. If she qualified for assistance through the Early Intervention program she would receive free treatment. We would have continued to fund private treatment as well, but would have liked the additional support.
Before I continue let me say that I think the Early Intervention program is fantastic. They work wonders every day for hundreds of children. They are caring, selfless, individuals who are true professionals. It is unfortunate that they are underfunded and that they are not able to provide services for all of the children and families that are in need of them. This is certainly not their fault.
This was my experience with Grace and the Early Intervention program. Grace was already almost 4 years old by the time I contacted them. It is much more difficult to qualify a child for services at this age. If I had contacted them right away, on the very first day that I noticed her behavior change, I believe she may have qualified under autism spectrum disorder. The other problem was that by the time I had her evaluated she had already begun many, many interventions. These interventions were helping Grace. This was what we wanted. However in a strange twist of fate I feel that the interventions also made it so that she didn't qualify for services.
The evaluation process involved a school observation and a home visit. Grace was attending preschool two days a week. The evaluator went to her preschool and observed her. Grace was very successful at preschool. While reserved, she didn't "act out" or typically have any behavioral problems. There was another child in her class who was very noticeably autistic and in the process of being diagnosed as well (by the same group of people). Let's just say Grace's observation seemed a bit ridiculous in comparison.
The next step was a home visit. A nice man came to our house at about 10:00 in the morning. He brought with him a bag full of toys. They just so happened to be Grace's favorite toys - lots and lots of toy animals. Now Grace would sit for hours upon hours and play with little toy animals and anyone who would play them with her would be her instant best friend. He sat on the carpet and played with her for an hour. She talked to him and laughed with him. They had a jolly good time. At the end of the "session" he looked up at me and asked me if I had any issues with post partum depression. I almost strangled him right then and there.
Why didn't he come earlier when she was gasping for air because there was a crumb on her chair? Or last night at dinner when we had to carry her up to bed at 5:45 because she was so hysterical about the green bean on her plate that I thought she was going to throw up, and then afterward when we had to listen to her scream in her room for an hour because we couldn't get her to calm down? Or how about yesterday when we were at the park and she stood shaking by the slide because she was too afraid to climb on it while all the other children laughed and had a good time? Where the heck was he then?
I thanked him for his time and showed him the door. I never contacted them again. The rest of the treatment and therapy that Gracie received was funded and provided completely by us. I received a write-up stating that she did not qualify for any services.
I think the problem is that there are many children who fall into what some people call the "gray area". They are not blatantly disabled. They aren't glaringly autistic, or have some other very obvious disability. These children may have Asperger's, OCD, Sensory Processing Disorder, or another disorder that is difficult to pick up in early childhood. These kids are getting "missed". They are getting missed by parents, caregivers, early intervention, and preschool teachers. It isn't until these children get into school and have trouble that someone finally starts to ask what is wrong with them. By then we have missed a huge window of opportunity to help them. Early intervention is just that - early. To be effective it needs to be started at a young age - preferably by age 3! If parents are bringing their children in to be looked at and are being told there is nothing wrong with them when there clearly is something wrong then there is something very wrong with the system. Unfortunately, until our early childhood intervention programs are adequately funded by the government I don't see this changing. Not all families have the funds or the knowledge to provide their own treatment for their child. It is both my honor and privilege to share our journey in hopes that it will help someone else.
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