John’s Journey - A Diagnosis

For almost two years now we have actively been searching and trying to better understand John’s delays and various sensory issues. The therapists that have worked with him have each commented that he is not a text book case of anything. “He is a mystery.” But with all of their help and guidance we saw huge progress. It has been wonderful to see a personality immerge in John that had been hidden from us previously.

With moving last summer and disrupting everything that was familiar and routine in John’s world we have saw him regress in a lot of areas. It is heart breaking to see so much of the hard work over the previous year by his therapists and us gone. We were able to help him progress but the retention when put under stress has shown to be weak.

Since this school year has began I have continued to work hard to be John’s advocate; to see that he is getting the help he needs at school as well as learn what services are available outside the school setting. This is exhausting work, but so rewarding when hurdles are overcome.

I recently have begun to think; if we stopped all his therapies, and stopped working with him at home would things be clearer? Would it be easier to pin point a diagnosis? Would I not have to advocate as much because his needs would be easier to spot, even by a casual observer? But alas I love and care about my son too much to put him or us through that option. And so we plug along exploring/discontinuing avenues when the timing and opportunity seems right.

One of these avenues was to have an in depth evaluation done by the School Psychologist and to have John seen by yet another Developmental Pediatrician who then wanted him seen by a Clinical Psychologist. We have been very pleased with the outcome. I think his age and the regression experienced with moving has been in our favor. We finally have a diagnosis; a diagnosis that leads to understanding; a diagnosis that I have wondered about for years. John has autism.

I read once that when parents get this diagnosis for their child they are either in shock and denial or are relieved. I am relieved! No longer will I shake my head in frustration as doctors, friends, and teachers tell me John is just fine, he is just slow or that the things he does are ”normal”. I recently read,”Once you have met one autistic child, you have met one autistic child.” They are each so unique and their strengths and weakness are so varied.

I really believe that John’s early intervention therapy and the follow up by us at home on his therapies over the years made it hard for someone to make this diagnosis until now. In the beginning of my searching to help John, I remember corresponding with a friend who works with special needs children, especially children with autism, and she advised me to “listen to your Mommy radar.” I’m so grateful that I have. On this journey up to this point there have been many times that I have wanted to give up, but there have also been some amazing spiritual experiences/insights that have helped me to see the bigger picture and which have given me the strength to keep going.

I feel like a big mystery has been solved, which hopefully, will open doors for services and further help down the road. A solved mystery, which will lead to greater understanding of my precious little boy.