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Wednesday, March 23, 2016

My Little Cricket’s Delay: Processing Autism in our Lives, Our Journey In a Nutshell

My Little Cricket had a perfectly normal first year. We were part of a large baby group and he seemed on par with the other babies in the group. He mouthed toys, he smiled, he made eye contact, he cooed and drooled. I was in absolute heaven with my wonderful baby boy.

We were part of two mommy and me groups. We had so many play dates and so many fun fabulous outings. And never once did I have an ‘ah ha’ moment that something was different with my child. He seemed again to be doing what he should be doing at the age he was supposed to do it. Other than walking a little late (at 15 months but since 9-18 months is the normal range for walking I wasn’t too concerned) nothing seemed wrong.

At 2 years old (May 21, 2015) I finally admitted that there was a very slow subtle creep of this feeling. Something was wrong or off or just different with my Little Cricket. I took the prescreening test for autism my pediatrician gives all her mothers and everything seemed fine. But I had started noticing little things, things that started bugging me. He had four words but seemed to lose three of them for about two months. He used words but not often and he wasn’t saying near as much as his peers were. I also brought up to my doctor that he wasn’t imitating me as much as other kids his age either. There weren’t any other glaring red flags, but to be sure there wasn’t something bigger going on my pediatrician recommended me to get a hearing test, see a geneticist and get a speech evaluation.

At 2 year 2 months (July 18, 2015) A general caseworker came over from the regional center. She was there to go over some paperwork that needed to be signed as well as the results from the speech and language reports. She was at my home for a half hour. She told me that the only service we were eligible for right now was speech therapy. That he didn’t qualify for anything else. And then as she was packing up to leave she mentioned that she was going to put in a request for us to get my Little Cricket screened for Autism. It was the first time autism was mentioned and my stomach dropped in terror. I did a ton of research, mostly drove myself crazy trying to decide if my son did or didn’t have autism. I freaked out. And then I called my pediatrician, I found the best place to get my son screened for autism and I made an appointment at the UCLA CAN Clinic.

At 2 year 3 months (August 11, 2015) I lost my mind and convinced myself that there was nothing to worry about; that my son didn’t need to be tested for autism. That that crazy lady who came over and said autism didn’t know what she was talking about. I was in denial, because we do strange things when we think that we are protecting our children and ourselves. I decided to cancel the UCLA CAN Clinic Autism Screening thinking that it was better to give my son time to catch up on his own. Also during this time (August 18, 2015) we meet with the local regional center coordinator. My Little Cricket was assessed to need speech therapy but not to need occupational therapy, clinic based preschool or an autism assessment. I took that as a good sign, if the regional center wasn’t worried why I should be. I continued to ask everyone and their mother what they thought, my mom group friends, the geneticist, my pediatrician, his preschool art teacher. Everyone assured me I had nothing to worry about… and yet I was still worrying.

At 2 years 4 months (September 10, 2015) my Little Cricket started speech therapy. In only 2 months he made huge strides but my speech therapist was concerned. My Little Cricket didn’t get approved for occupational therapy the first time we tried through the regional center however my speech therapist saw too many sensory things; she was convinced he needed OT. And so she helped me appeal to get my Little Cricket re-evaluated.

At 2 years 5 months (October 10, 2015) I visited my friend Ms. Pool Shark; a very dear friend who just so happened to have a degree in psychology. She did one of the hardest things a friend can do. She was brutally honest, and told me with love in her eyes that there was something wrong with my son. That I needed to get him tested; that I had to stop lying to myself. Even though I have known in my head something was wrong my heart couldn’t stop hoping that everything would be fine. I called that day and rescheduled our screening for autism at the UCLA CAN Clinic.

At 2 years 7 months (December 9 & 10, 2015) we got my Little Cricket evaluated both with a respected developmental pediatrician and the UCLA CAN Clinic. The developmental pediatrician told me exactly what I wanted to hear. That my son was defiantly not autistic but simply delayed. That he needed some therapy but that all would be well. And then we spent Christmas praying that the UCLA CAN Clinic would say the same thing.

At 2 years 8 months (January 5, 2016) we got the results from UCLA CAN Clinic for my Little Cricket, he does have autism. I cried, I still hoped in a corner of my heart that the developmental pediatrician was right. There of course was more denial… more back and forth… is it/ isn’t it. I had no concrete answers. But I didn’t have the luxury of not acting anymore. I couldn’t keep waiting until I knew for sure, or until we got another round of tests and doctors. I decided that the diagnosis didn’t matter as much as getting my Little Cricket the help he needed. It was time to start looking for the right therapies to help him. Our world was about to become very very busy.

In January, we continued our speech therapy sessions. I also kept attempting to find the right preschool for my Little Cricket. I met my mentor, a woman with an autistic son and who helped me navigate my initial feelings and helped guide me into a path of treatment I felt comfortable with. We also began JASPER at UCLA, a new therapy for treating ASD that is close to its approval phase. We started Floor time Therapy; a play based loose fun therapy that I adore.

In February we started a Clinic Based Preschool for children with delays. We started in the blue room which I wasn’t happy with and then transitioned to the rainbow room that I love for him. We started JASPER Mommy & Me, a ten week parent training course on how to implement JASPER in the home. We started my Little Rose in the UCLA Autism Sibling study, because siblings have a 20% higher chance of having autism, which will help me keep an extra close eye on her development.

In March we began four times of OT a week. A crazy amount by anyone’s standards but we are hoping that we can regulate my Little Cricket so his other therapies can be more efficient. We also added on two home JASPER sessions which I am so excited about. We began physical therapy once a week. In an attempt to gain more knowledge and create a community I went to my first LA FEAT meeting. Finally I got a second opinion from another psychologist at the Westside Regional Center; she confirmed that my Little Cricket does in fact have autism. And now we can finally move forward.

Denial is a parent’s biggest enemy. No one wants to admit that their child has a problem. The problem with denial is that my Little Cricket was the one being hurt. My son was exhibiting signs of autism since he was 2, I knew it. On some level I always knew it. Instead of listening to my head and seeing the facts clearly I listened to my heart and all the noise supporting what I wanted to hear. Instead of thinking that my son COULD have autism I waste time making a ton of excuses why he COULDN’T possibly have autism. I kept my head in the sand and wasted precious time. It took me 8 months to navigate my denial, get screenings, start therapy and finally come to acceptance. Now I am moving mountains, but the biggest mountain I had to get over is accepting that my son has autism.

I am left now with lots of choices. I choose to focus on the positives and help support my son in the areas he needs most. There are some huge accomplishments that have been made in a short three months. Things that might seem like little things to others but that are huge accomplishments in our world.

My Little Cricket:
- asked me to ‘help him’ unprompted when having difficulty with a toy
- called ‘wait for me’ as I started walking away from him at the park
- started giving me slobbery kisses
- started showing some separation anxiety
- acknowledged the baby with a ‘Hi baby’ a pat and a smile
- consoled the floor time therapist when she cried and gave her a hug
- said ‘come in’ to the speech therapist with the beckoning gesture

And so the journey continues. Not the journey I had originally planned but a journey that we will fill with joy.

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