Saturday, July 18, 2015

My Little Cricket’s Delay: The Denial is Over

I feel like Alice in Wonderland falling down the big dark never-ending hole trying to make sense of the things that are flying at me way too fast.

I have noticed that my son doesn’t speak as well as his peers. He also has some behaviors that seem a little off to me. At his 2 year pediatrician appointment I spoke at length to our pediatrician. My doctor expressed a mirror of my concern and ordered me to get a few tests done. A hearing test, which he passed with no problems. A geneticist screening which I am still working through insurance on. And a speech appointment which I scheduled through the West Side regional Center. The occupational therapist has come, he passed with flying colors. A speech therapist came and she agreed that he has a speech delay and could benefit from some speech therapy.

All of this didn’t concern me. My son is happy, healthy, thriving. My brother spoke late as did my husband and both of his siblings. My husband’s son also spoke late. Every child develops at his own pace. And I trust that things are just a little slow in the speech department but that they will get there eventually. So I understand and opted to get a little speech therapy just to be sure I get the best care for my son. I can do that.

But then seven days ago the caseworker for Westside Regional Center came over. This was just a routine appointment to go over the results of the other consultations and to go through a few documents. She went through paperwork, talked about the processes off how my Little Crickets treatment for speech therapy will get approved and then said she wanted to get my son screened for Autism since he was showing signs of possibly being autistic.

The minute she said ‘Autism’ my lungs seized. We were meeting for a little speech delay surely my little boy doesn’t have autism. The center thinks my son might be autistic. That he is showing signs and needs to be tested. And in that moment the life I had dreamed for my son died. I knew we would get through it. I knew that if you catch autism early enough that the therapies help tremendously. I knew we would craft new dreams together for the future.

But I was devastated. Lost. In tears. And then a tidal wave of denial crashed over me.

In fact it has taken me 7 days to write this post because that is how long it took me to stop my racing thoughts and trust in the process. I did some research… google is a scary place. And all it did was confuse me more. The problem is that I don’t know enough, the internet is rife with speculation and I could be interpreting the data I am reading wrong because I am so emotionally invested in my son. I read things about kids with autism and I can possibly see some of them in my son but then again I go online with symptoms of a persistent headache and WebMD tells me I have brain cancer.

In fact a few years ago I found a small lump in my armpit and the internet convinced me I had lymphoma. Two days later I saw my doctor… I had a clogged sweat gland.

So I shut down the search engines and have decided that instead I am going to hold onto a few hopes.

1. A request for a screening for autism doesn’t mean my son has autism. This is not the final diagnosis.

2. My son may exhibit some of the signs of autism but he has wonderful eye contact, he loves games and playing with me and other people. So if he is autistic possibly he is on the higher spectrum.

Regardless of any diagnosis he is still my darling baby boy.

So with denial over, with my wild goose chase on the internet to find out myself if my kid is autistic I sat down and started doing the real work of getting him screened by the best. I called my pediatrician, I called my insurance, I talked to a few friends who had either knowledge of early child development or experience in the screening process. And then I made a KABILLION phone calls all over town talking to doctor offices and hospitals. In the end I opted to make an appointment for my sun at the UCLA Child and Adult Neurodevelopmental Clinic. Unfortunately everything moves way too slow. The earliest opening is for a month from now, and I was only lucky enough to get that because there was a cancellation.

Waiting is going to be so hard. Until then I need to stay calm, stay strong and love on my Little Cricket.


1 comment:

paul peggy zeus said...

It's going to be okay. No matter what, Cricket is a wonderfully happy, well adjusted little boy.

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