I Can’t Dwell On The Fears

It was no surprise to me. I mean, I didn’t even cry. Maybe I even zoned out a little bit.

I heard him say, “What we are looking at is Autism Spectrum Disorder.” In my mind I was still thinking about why in the world playing with a baby is an important part of these assessments.

He went onto say, “I am writing his prescription for 10 hours of TSS and 3 hours of BSC weekly.”

I mean my son has never even played with a baby doll. Why would there be any interest in that now! And what is TSS and BSC? I need to remember to look that up.

And then, “You will need to get a medical card within XX amount of days, find a therapist, do this paperwork, do that paperwork, and we will re-evaluate/re-access him in 6 more months.”

I snapped out of it and responded, “Okay… so I will see you in 6 months?”

“No,” he says. He only does initial screenings. “You will need to find someone else to evaluate him.”

In my mind I am honestly still thinking that I really need to incorporate more baby dolls into our play.

The doctor keeps going. “Here is all this information. Call this other person if you are confused. Have a nice day.”

We gather our things and head to the car. I think Chase is happy to be done. He was trying to escape the little room we were in almost the entire assessment. He starts talking in the back seat, “Da Da Da Da!!! Da Da!!! Da Da Da Da!!”. I tell him I agree. We should call Da Da. So I do, and I tell JC everything I can remember from the appointment. I tell him about the therapy increase and the paperwork.

We both agree that the diagnosis is a good thing at this point. It can only help our buddy.

Like I said…I wasn’t surprised. I didn’t even cry. That is not to say that I haven’t ever cried. I’ve cried a lot. I’ve worried a lot.

Autism and the characteristics of it were not new to me though, so I honestly diagnosed Chase long before we got the formal one. Chase was born early and I look back now and I thank God for it. At the time it was scary because he was in the NICU in an incubator, etc. but now, I realize that maybe this happened because God knew Chase would be autistic way before I did. So, he set Chase on a path of support I didn’t even know we needed yet.

Chase was the happiest baby and really still is the happiest toddler. He was smiling on command at 4 or 5 months. If I said “cheese” his big gummy smile would emerge. Eventually that stopped on command. A word or action would emerge and poof, eventually it disappeared.

He was developing fairly typically until about 1 year. His once delayed motor skills were now decent (OT was helping) but he had no real words. He babbled but nothing with real meaning. He also had some unique behaviors that were head scratchers…like eating things that were not food (carpet fibers, blankets, stuffed animals, his crib). We were working on this with his OT, as well.

He also was a terrible sleeper (still is)…yawn. But he was also really engaged sometimes, and loving, and played with toys appropriately a lot of the time. He would run to me when I picked him up from daycare or when I came home from work. He knew, organically, that his little plastic basketball went in his little basketball hoop. He met most motor milestones within the range although at the far end of it.

So, in many ways, he was developing what I would describe as “normal”. But as 1 year turned into 18 months we really started seeing more ‘unique’ behaviors. Like when he lined up his cars. Or just how important cars had become to him. He kept them in his hands at all times– like little security blankets.

But by far his biggest set back is language and communication. We have a non-verbal, non-gesturing toddler. He doesn’t speak with any clarity or real meaning and he rarely points. He gets by. He goes to his chair if he is hungry or grunts by the fridge or microwave. He pounds on the back door if he wants to go out to play. He has a way of getting what he needs. I am super grateful that he has receptive language. He knows what I am talking about and we have made a very clear effort to talk through everything we do. So he understands even more. I know this is half the battle but I would prefer to be winning in 1/2 the battle than none of it.

Fast forward and we are three weeks post diagnosis and not much has changed from our usual routine. Yet. We are lucky.

We have a wonderful Early Intervention team. Chase already gets Speech on Mondays and Tuesdays, OT on Wednesdays, and Behavioral Therapy on Thursdays and Fridays. They alternate between visiting home and daycare. I’ve completed all the paperwork and was informed that Chase qualified for his medical access card. Also a big benefit in the state we live– PA has a loophole so Chase’s needs will be fully covered. I pray he always will!

On a super positive note Chase had his annual Early Intervention evaluation last week and he was a rock star. Scoring at age for almost everything besides speech. So kudos to my buddy for having a great day. I have heard that in this autism world there are a lot of 1 step forward 2 steps back situations. This was certainly a step in the right direction. I like to think we just keep moving forward. Even if its a centimeter we need to just focus on what is going right and try very, very hard to learn from what is going wrong. Then adjust… then adjust again… then a little more.

I guess I will end this by acknowledging my biggest fears and counting my blessings.

I have 3 fears about his diagnosis right now. I know…only 3. I am sure this list will grow.

I fear that Chase will never speak. I just long to hear him speak and tell me his thoughts and selfishly hear him call me mommy! Or tell me he loves me.

I fear that he won’t have friends. We rely so much on our friends. It breaks my heart to think he may not have this type of bond with others.

I fear that I will get old and there will be no one to care for him or about him like his dad, sister, and I do. This is the big one for me. What happens with this amazing person if we are not here to help him?

I can’t dwell on these fears. I have to forge on and put my trust in the faith I have that Chase will be okay. He has a lot of people rooting for him and a lot of people in his corner.

Even more importantly though, I need to focus on the good.

I am blessed to to have this amazing little boy who thinks I am better then sliced bread (gluten free–of course). I am blessed that he understands me. I am blessed to have a supportive husband and the support of my 10 year old daughter who understands that sometimes my attention needs to be on Chase (even if she is not always fond of it).

I am blessed with wonderful friends, co-workers, and neighbors who are really our extended family. I am also blessed with a supportive family, although we don’t live by any them they are there for us. I am blessed to already know special needs on a personal level and have a keen understanding of the importance of acceptance and inclusion. I am blessed to have a job that gives me lots of time off so I can attend to my kiddos needs.

Honestly, in the grand scheme of life, I am just really, really blessed all around.

Written by, Millie J. Rodriguez

My name is Millie. Mom to Brooklyn (10) and Chase (2). I am a university director, passionate about distance education by day and try to be super-mom the rest of the time. My son, Chase, was diagnosed about 7 weeks ago with Autism. He is currently moderate to severe on the spectrum and is non-verbal.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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  • Chris

    June 14, 2018 at 12:23 pm
    Reply

    Hey Millie, You are so far ahead of the curve at the moment and all of the early interventions that Chase is doing will pay big […] Read MoreHey Millie, You are so far ahead of the curve at the moment and all of the early interventions that Chase is doing will pay big dividends. It's been many years now, but I've worked in schools with great autism programs and have seen kids both verbal and non-verbal make great strides through the elementary school years. You have a great support system in place. I can't do much more from a far than say that you are doing a great job and your son couldn't be in better hands!! Read Less

    • Millie
      to Chris

      June 14, 2018 at 12:45 pm
      Reply

      Thanks Chris! I appreciate the words of encouragement!

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