• Chas

Our Autism Journey – Shay’s Diagnosis

Updated: Mar 8

Autism Diagnosis and Beginning Steps

About three weeks ago my mom and I were talking and I was commenting about my concern that Shay never responded to her name. I was trying to get her attention and she wouldn’t look (which wasn’t new), but for some reason that day it clicked. I knew she could hear me, because she would look towards noises or of course her favorite, Mickey Mouse, but her name or her many nicknames never got her attention. Nothing I said did other than indicating that it was time to eat… My girl!

In addition to her not responding to her name, she never made eye contact. I can count on one hand the amount of times she’s looked someone directly into their eyes within the last 18 months. At this point, my mom and I decided it was best to make a phone appointment with her pediatrician and me being me, I started my extensive research.

Early Signs

I found a video on a prestigious Autism organization’s website that compared a 17-month-old boy without ASD (Autism Spectrum Disorder) to a 15-month-old boy with ASD and wow, it was like watching Shay. The little boy with ASD was a mirror image to how Shay moved, played, and avoided interactions. At that point I wanted to understand all the signs and warnings within a child her age, so I kept researching before our phone appointment an hour later.

30 minutes later I ended up with 2 pages worth of signs and symptoms Shay possessed. These included:

  1. Not responding to her name

  2. Not making eye contact

  3. Repetitive behaviors (“Stimming”) such has: spinning, rocking back and forth, head banging, pacing, rotating toys in front of her face, and flapping her hands and arms.

  4. Walking on her tip toes

  5. No words or interest in learning how to properly communicate

  6. Repetitive sounds such as: “yeah” or “oooh” or “da”

  7. Not interacting with others during play-time

  8. Not imitating noises or behaviors

  9. Zoning out often

  10. Disruptive sleep patterns

  11. Sensory issues like her head getting wet, being cuddled unless she initiated it, chewing LITERALLY everything, touching things or people too soft or too hard, trouble focusing, sensitivity to light, etc.

…and the list goes on. At this point, when the doctor called me I already knew where we were at. I had been saying for awhile that Shay looked so little and that she still acted like a 9-month-old. Little did I know, this was part and parcel to her having autism.

The Road to a Diagnosis

After speaking with her pediatrician, she definitely agreed that it sounded like Shay could potentially be on the spectrum and she ordered tests and evaluations for her. She wanted Shay to get her hearing checked and then be evaluated for her speech and a overall ASD evaluation.

After speaking with the Dr. I also was referred to our local Regional Center, a state-funded organization that provides services you may not receive through your insurance. They too scheduled an evaluation to watch and observe Shay through various guided activities.

Her first evaluation was speech and it was a very short video chat that was just asking me questions since obviously, Shay doesn’t communicate. We talked and I answered questions, voiced my concerns, and was left with an authorization for speech therapy for Shay. Her delay was determined to be severe so this was something I wanted to jump on ASAP.

From there, she had her evaluation with Tri-Counties. It was an hour-long call that consisted of me guiding Shay through simple activities to see if she would A. imitate, B. show interest and C. respond to certain activities like most her age would. From there she was observed in play-time to see how she interacted with toys, to watch her stimming behavior, to see if she would respond to me speaking to her, and to also just watch her overall body composition with movement. The evaluation ended and I had to wait a week for her results.

Next was her last evaluation through our insurance. It was less thorough and they only watched her in play-time mode. They were mainly asking me questions, but kept saying it was hard through video chat to properly diagnose her especially since she was so young. This was frustrating for me, since the other evaluation was so thorough and organized. Age didn’t matter, even though she is the youngest age they can typically diagnose, but regardless the evaluation ended and the therapist mentioned that she would put Shay at a 9-month-old level and that she was on the spectrum at a moderate to severe level (they base it on how much therapy would be needed.)

So she was diagnosed at this point and now I waited for all her therapy authorizations to go through and to wait to hear back on her final results from Tri-Counties. After a week the results came back and they gave me an entire breakdown on where she stood at every level on human development from communication, to cognitive, to gross and fine motor skills, and emotional, etc.

The results didn’t differ much. She was very low in comparison to other children her age in most categories. So now, we wait for her therapy to begin. She will be in an Early Intervention Program, Speech Therapy, Physical Therapy, and Occupational Therapy for the next 6 months before her next evaluation.

autism diagnosis

Parental Processing

A.K.A. The emotional wreck I became.

Look, I know Autism is so common these days… Too common in my opinion, but that doesn’t change the fact that no parent wants to hear or realize that their child has a disability or is challenged in some way or another. When I first started to realize this is probably where we were headed, I lost it. Not gonna lie…

The reason why it hit me so hard was because I knew this road would be challenging. It already was, and to think it wasn’t just teething or some phase made it hard to process, especially as a single mom. Thank GOD it isn’t some death sentence or some seriously tragic diagnosis, but that doesn’t change the rapid rabbit hole of thoughts that start to follow and it doesn’t change how I had to quickly mourn a life I thought I had mapped out.

I will say the past year and a half has taught me the most valuable lesson of life… Do NOT think ahead of this present moment. Do NOT project what you think your life will look like outside of this present moment, because 9 times out of 10 we are so far off and so wrong.

Never did I think I would be divorced, a single mom to a girl (always thought I’d be a boy mom), with a daughter who has Autism. I never would have imagined this would be my life, but it is and because I had projected this perfect idealistic future, I had to grieve and mourn the life I thought I’d be living a few times over this past year.

I felt so guilty for crying. I felt so guilty for being so down about this new chapter in our lives because yes it is hard, but it’s not the end of the world. But there I go again, denying my feelings and invalidating my emotions. So, I let myself have a day to feel sad, down, stressed, and frustrated. Then, I picked myself back up until the next time I felt that way, I let myself have another day to just feel. I gave myself grace which is so hard to do, but so important.

Next Steps…

So, Shay starts Speech Therapy in a few days which is exciting and her other therapy services are being organized next week to start soon. It will be a long process but I have faith in her, she’s a smart cookie.

Her sleep schedule is so disrupted by her stimming behaviors that it has made getting a good night sleep impossible. We usually are up at 3 or 4am for quite some time, but knowing why she is waking up distressed has made it easier for me to have more patience and compassion, two things I was never great at before being a mom.

We will see how she responds to her therapies and then re-evaluate in 6 months.

I wanted to document this process because as I was doing all my research and what not, I stumbled upon this beautiful blog post that summed up how I felt perfectly. It was everything I needed to read and hear to make me feel like this journey we are going on would be OK, it would be hard, but OK. Of course, now I can’t find the link, but when I do I will make sure to add it in.

As a new parent, or new-ish parent, it’s hard to know what’s normal and what isn’t. Listen to your gut. If something seems off, make a call.

I will say, I spent a lot of time comparing Shay’s milestones to my friends’ kids around her age and I knew for awhile she was behind but I chalked it up to “every kid is different” which is true, but still doesn’t change the fact that asking a professional doesn’t hurt, it can only help.

Until next update… Take care and be safe.

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