In This Together

babyO

Dear Oliver,

When you were little and it was time for you to start reaching milestones I began to notice that some of them took a little longer for you to meet than others.  I can remember trying to get you to mimic me by sticking out my tongue, but eye contact couldn’t be made with you.  I researched the internet constantly from the time you were born to make sure that you were on track and I knew that some children take a bit longer than others and this was normal.  I figured that you were doing your thing your way and when you were ready you would eventually meet whatever milestone we were working on.  I noticed that you never pointed at anything.  You never tried to tell me that you wanted something by pulling me and showing me what you needed.  There are cranes that come into our backyard and I would try to get you to see them and you just wouldn’t respond.  You never looked toward where I was pointing and when you did finally see them you could have cared less and continued to happily play with a rock you found interesting.  You only spoke one word and that word was mama, but to you everything was and still is mama.  You don’t relate the word to me.

You do repetitive things such as pacing backwards and forwards.  You jump onto our recliner and push the back down so you can rock on it and you will do that forever it seems.  You bat at your ears and you spin in circles.  You love things that spin and you do not play with toys like others children.  You study them and try to figure out how they work and if the toy has anything that spins that is what you do to play with it.  You wave your fingers in front of your eyes and cover your ears when you are overstimulated.  You do not pretend play in fact you don’t play with me at all.  You are in your world and I am constantly trying to figure out how I can be in it with you.

You are sweet and tantrums are rare and short-lived.  You do smile at me and lately you have been making eye contact with me.  You love music and you can bounce your foot to the beat of a song without trying.  I figured out that if I sing to you instead of talk to you, you will more often than not pay attention to what I am trying to tell you.  You rarely respond to your name and for a long time we thought you might be deaf.  You come over to me and touch my leg or climb on me and sit for a minute just to be sure I am still there.  Twice you have kissed me out of the blue.  You love me and you show it and for that I am so thankful.  If I have sunglasses on you take them off and look at my eyes and face closely as if I had disappeared behind them.  You have autism Oliver.  I have known in my gut that you were unlike anyone I have ever met before.  It’s one of my favorite things about you and if there was a pill that would take it away I would hope that you would choose not to take it because then you wouldn’t be Oliver…

Autism basically means that you have a difficult time with social interaction and communication with tendencies to do repetitive movements sometimes called “stimming.”  It’s not that you don’t want to play with others it’s just that you don’t know how.  Your brain is wired completely different and so things that are normal to others are odd to you and uncomfortable so you avoid them.  Speech is hard for you also because of how you process sounds.  Ever since you were small everyone has commented on your eyes.  How big and beautiful they are.  How they seem to pull you in and how unique they are.  The neurologist told me something that makes complete sense of why not only I, but everyone loves your eyes.  Since you can’t speak words you communicate with your eyes.  You talk with them.  I LOVE that!  Lately you have been saying new sounds such as yaya, baba, dada… I got you to say these things by singing them to you.  It is common for a child with autism to have higher intellectual abilities and talents towards specific things such as art, music, or math.  You love music and you have since you were born.  Music is your thing.

I just want to write to you about how we got to where we are with your diagnosis and tell you about what you have been through.  In August your doctor gave me a referral for speech therapy.  You met with a speech therapist and he agreed that you were delayed and planned to get approval from your insurance for therapy.

In September your doctor met with me and I expressed my concerns about your development and the red flags you were displaying such as no eye contact, non-verbal, no pointing, no pretend play, stimming, not looking at what I point at, not being able to follow simple instructions, and so on.  She gave me a referral to the neurologist.  You were also seen by an audiologist who could not test your hearing because he needed cooperation from you and you screamed the whole time.  He referred you to Nemours Childrens Hospital to have your hearing tested.  You were seen there and were given a referral for a CT scan to rule out brain damage or other possible abnormalities related to speech and she also gave you a referral to have an ABR test done at Arnold Palmer Hospital for Children.

On September 25th you were seen by your neurologist.  She observed your behavior and agreed that it was atypical.  She tried to engage you in play with toy cars so she could examine you but you pulled away wanting to repeatedly open and shut the cabinet doors.  She had me fill out the MCHAT which is a screening for autism and she used a tuning fork on each big toe and by your ear.  She diagnosed you with Autism Disorder Current/Active State with Lack of Normal Physiology Development Unspecified.  She gave referrals for Occupational Therapy, Speech Therapy, and Behavioral Therapy or ABA.  She also wanted blood work to include chromosome karyotype, chromosome microarray analysis, and fragile x syndrome which are genetic tests to see if there are abnormalities.

The next day you were seen by your doctor for a follow-up and I mentioned that when you look at something your right eye tends to drift inward.  She observed this also and referred you to Nemours for an eye exam which isn’t scheduled until December.

On October 3rd you had your CT scan done.  They had to sedate you so you would remain still and I was able to be with you as you went under anesthesia.  That was difficult.  I knew that if I was there it would be easier on you and you screamed as they put the mask on you. Finally you took four shallow breaths and closed your eyes.  The nurses and the anesthesiologist talked me through it and made me feel more at ease but inside I wanted to grab you and run.  You did great and had no problems!

October 7th Early Steps called and set up your evaluation to begin therapy.

Yesterday you had your ABR test done which is basically a test they do to measure your brain waves as different sounds and tones are played in your ears.  This tells us how well you can hear or if you are deaf.  This was a tough day for you.  You got a hospital gown and had wires everywhere.  You were thirsty but couldn’t have anything because you were going to have anesthesia through an IV after you go to sleep with the mask.  You cried and clung to me.  You were allowed to have your blanket (Linus) and they gave you a medication to make you calm and less anxious.  After you took that medicine you were A-OK.  You didn’t have a care in the world and the nurses loved you.  You tried to stand up on the way to the OR and a nurse ended up taking you out of the crib and carried you the rest of the way.  They told me you were grabbing their cell phones and playing with everything.  When they introduced the mask they said you took your binky out and grabbed it pulling it to your face like a pro.  🙂  The results were what I expected.  You have text-book hearing and this means the Autism diagnosis became real.  No doubt.

You have been through so much in your 20 months on this earth.  You have been stronger than I ever could be.  You have been stronger than me even and I admire you.  I think you are wonderful in so many ways.  Everyone that meets you falls in love with you.  I know you were meant for me and I want you to know we are in this together Oliver.  I’m with you every step of the way.  You are unique. I like that. There is so much more I want to say but I think this is enough for today.  Autism is not a disability.  You can do anything I can do you just do things differently and I will learn how to be in your world.  I promise you.

Love,

Mommy

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