trying to find myself and humor in life

Our life on the spectrum – Part 1

Rainbow above Kaviškis Lake, Lithuania

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Have you every thought about having J evaluated?  The pediatrician asked me rather casually in April 2010. J and I were there for an ear infection and frankly, all I was thinking about was some amoxicillin.

Ummm evaluated for what?  I asked. Well it just seems that J is a little ‘difficult’ to parent and maybe you should have him tested for PDD-NOS. It’s nothing to worry about, some kids ‘outgrow’ it.

BAM Those words were like a whack to my head. What the heck was she talking about and what the hell is PDD? J had just woken up from a nap and had a cold for 10 days, of course he was being difficult. He was already in Early Intervention (EI) for a speech delay what else did the doctor want me to do? I ignored it for a while (probably 30 minutes) and then did what any other mom would do – I Googled.

Big mistake. PPD-NOS stands for Pervasive Developmental Disorder – Not Otherwise Specified and is associated with AUTISM. W-T-F was all I could think. I was sobbing at my computer thinking that the doctor thought my adorable, blond-haired, blue-eyed almost 21/2yo, baby was Rainman.  No way, not J that doctor was 100% wrong.

Months go by and J is still not talking at an age appropriate level. I get varying opinions on why. Speech therapist #1 tells me J is just a control freak and doesn’t feel like talking.  Speech Therapist #2 says that he is just not ready and when he is ready he will talk. Speech Therapist #3 says that once J turns 3 he will probably talk non-stop boys just take a little longer.

In the fall I decide to have J evaluated for Autism Spectrum Disorder (ASD). I have convinced myself  he is fine but I just want to make sure. It’s just a co-pay. We will get the evaluation, they will tell me J is fine and we will move on.

Of course I can’t get an appointment until January 2011 so we wait. The holidays come and go and I find myself always staring/analyzing J. Is he looking me in the eyes when I talk to him, is he playing with his brothers, is he flapping his arms, is he social with his cousins??? 

January 10, 2011 J and I head out at 8:00a for his evaluation. I told family that we were going for another speech evaluation, why get them all worried when it will be nothing. I even sugar-coated the appointment for the husband because it will be fine.

J was NOT fine. In the matter of 30 minutes I’m told my baby has Autism Spectrum Disorder (ASD). He would need out-patient speech therapy, occupational therapy and a consult with a neurodevelopmental pediatrician. A social worker would contact me shortly and there was a support group meeting for newly diagnosed ASD families in a week. Oh, it was also suggested that I rent the Temple Grandin story on dvd.

W-T-F. I start crying and J and I leave. I decide the evaluator is wrong. J did do what she asked but she didn’t notice. Plus, the evaluator is a total stranger , of course J didn’t want to cooperate with a stranger he’s a baby after  all.  And who or or what is Temple Grandin??

I tell no one J’s diagnosis with the exception of  my best friend and husband. When family ask what is wrong I assure them it is just a speech delay. I will NOT have people label my son and think of him as Rainman. I tell myself we will get a second opinion and I ignore all calls from the social worker.

All I do is think about the label of ASD. It haunts me.  Why does my kid have to carry this burden at the age of 21/2. The label wont just go away, he’ll be forced to carry it around his entire life. Kids in school will tease him and people will give us that pity stare when they see us.

Weeks go by and I am a mess. I am moody (more so than usual) and spend any spare time I have staring at J. He is the one that needs my attention, not the other 3 toddlers in the house.  The other kids are  “normal”. I devote hours at work either on the internet looking for information or on the phone trying to get appointments for speech and occupational therapies or a second opinion.

In between all this I remember calling our pediatrician to give her an update. She listened to me then told me not to focus on the label but rather, what doors the label would open for J. You are a good mother and you can do this she said before we hung up.

It has been 1 year and 2 months since J’s diagnosis and guess what?  I can do it,  WE  can do it. It has been a long, emotional and stressful journey but we are doing it everyday. A little while after the phone call with the pediatrician I spoke to the social worker (she was AWESOME), I went to the support group (I took my good friend so it wasnt too bad) and more importantly, I stopped feeling sorry for myself and for J. I stopped asking why me..why him and began to look past the label of ASD and focus on what I needed to do for J, not because he had ASD but because he was my son.

I also tried to focus some of my negative energy into paying it forward. There is an extraordinary amount of information on ASD and it is completely overwhelming. I did not want another newly diagnosed parent to feel as helpless as I did. I wanted them to see that it would be ok. That they will need to look past the label and become an advocate for their child. Hey, if I could do it anyone could.

J has made amazing progress this past year.  A year ago, J could say a couple of words if prompted. Today he is able to speak in a sentence and communicate his needs/wants (wants being easier). He attends a full-day, autism preschool program and takes a bus to school.  J goes to out-patient OT and ST 2x a week and has started to take part in circle time at school. He loves to sing, play on the playground and his favorite class is gym. Hands down though, THE absolute best thing J has done is say one simple word Moni – which is how he says mommy. 

Everyday is not always easy. There are days I want to cry or pull my hair out because I just can’t take it.  I want J to be “normal”. Then I look into J’s blue eyes and see him smile and I tell myself it will be ok that he is “normal”.

This was not an easy post for me. J is my baby (technically he is the second to youngest but you know what I mean) and I will do anything to protect him. I am also not someone who goes around as a walking billboard for autism. However, I think it is important for other ASD parents to hear our story and support one another. In the months to come I hope to share more stories about our daily struggles with ASD. I should warn you, I always try to find the humor in things, especially with ASD so I hope that won’t offend anyone. I believe that if you can laugh and smile at things it makes them a little easier to tackle.


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6 thoughts on “Our life on the spectrum – Part 1

  1. Great post – heartbreaking, but also honest and real. I can’t believe you kept the info to yourself! Though, I do remember not telling that many people initially, then after a while it was, ‘oh yeah, have I told you?…’

  2. Melinda on said:

    What a phenominal post! Do you mind if I share? Let me know ((hugs))

  3. So glad that J is thriving from just a year ago and that you could write about “your” feelings, Nicole!

  4. terri basile on said:

    love this post the best, i know u have a hard time talking about it, but wrote about it beautifully as i read it and cry, our Jakes is a beautiful, happy and smart little boy and are blessed to have him in our lives

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