Friday, January 15, 2016

Somewhere on the Spectrum. Written by Amy Kattre

Somewhere on the Spectrum

Our son was born in August of 2012, just four days shy of his due date.  He joined his big sister who was just 19 months old.  After a difficult couple of years trying to get pregnant, we were thrilled to have two babies close in age and of course happy that we now had one of each.  

He was such a happy, easy-going baby.  When I look back at pictures of him, I am amazed at how many I took, but he was just so happy all the time, I couldn't help it.  He hit all of his major milestones on time, he babbled a lot, he made eye contact.  But as time went on and the closer he got to 2, he wasn't saying many words.  His sister was a late talker and we were worried about her for awhile, but it was almost as if one day it just clicked with her.  One day she wasn't talking much and the next day she was talking in full sentences.  So as many parents do, we just kept waiting and thinking he would be a late talker like his sister.



Then we noticed something.  The arm flapping.  He seemed to be doing it a lot more and it seemed like it came out of nowhere.  Anything that excited him caused his arms to flap.  This past summer sometime, I took the kids (I now have three - we had our baby girl in March) to my grandma's house and my mom and aunt met me there.  My son was playing and interacting like he always does, and he was getting excited and flapping his arms.  I remember looking at my aunt, who has a lot of knowledge and experience in this stuff and saying, "Isn't that a common sign of ..."  I didn't even finish the sentence.  But I didn't need to.  She shook her head yes.  We talked after that about how interactive he is, how he makes eye contact, etc.  But it was in that moment that I knew we needed to get him evaluated.  I will never forget that moment.

His pediatrician got us the referral to see the pediatric psychologist and we met with him for the first time on August 19th.  After about an hour of being there he said we needed to come back for an official evaluation, but he thought our son was on the spectrum, but almost seemed like he had one foot in and one foot out.  Our next appointment would be September 3rd.

Another day I will never forget.  I think my husband and I both knew what the outcome was going to be.  But when he told us that he thought our son needed intense in-home therapy for 25-30 hours a week?  It hit me like a ton of bricks.  I felt like I was going to throw up and I have no idea what he said after that.  He could see in my eyes that I was about to lose it so he grabbed the kleenex box and came to sit next to me.  He asked me if I was ok and I just started crying.  In that moment I had so many thoughts running through my head.  I was thinking about all the hopes and dreams I had for my son.  What will his future be like?  I was thinking about all of this therapy and how I was going to have strangers in my house every day for several hours.  How much our lives were going to change.  I was thinking about how it wasn't fair.  It's not fair that he has to spend 5-6 hours a day in therapy.  He's 3 years old.  He should be able to run around and play and get dirty and be a normal little boy.  But what had me most upset in that moment was the guilt.  Through the tears I told the doctor there's got to be something I did wrong.  I had a rough pregnancy with my third baby and I didn't give him enough attention during that time.  And now the baby is here and I'm breastfeeding and I'm not giving him enough.  I failed him.  That guilt that I felt (and let's be honest, I still have a lot) was just too much in that moment.

The doctor took my hands, looked me in the eye and said to listen carefully.  It's ok to feel sad and to cry and be upset.  He told me to go home and have another good cry.  But then I need to get ready to fight.  My son needs me more than ever.  Things are going to be hard.  It's going to be a long road, but if I don't fight every day for my son, nobody else will either.  He told me that the process for getting him help at school and in therapy programs is frustrating and long.  My son is 3 years old and has so many positive things that he does.  The doctor told us that with this therapy and him being young, he believes he will see incredible progress.

So here we are, only 4 months later.  And let me tell you, I have fought for my son and I won't stop.  He recently started the in-home therapy and although it's very early, he is doing great.  I decided to start my own blog and Facebook page and document this new journey our family is on.  In these past few months, I have had a hard time sleeping at night.  I have so much on my mind so having this place to express myself is very therapeutic for me.  It also gives my family and friends a chance to keep up with his progress.  I also hope that maybe some day someone will find my blog who has a child recently diagnosed and be able to relate to what we're going through.

We obviously had some other concerns other than the arm flapping, but that was the one major red flag for me.  Some of the more "common" autistic behaviors, he doesn't do.  I say "common" because the doctor told us the spectrum is the size of Asia so I don't know how people can really say what is common or not.  But anyway, he is and always has been an awesome sleeper.  He sleeps through the night great and still takes 3 hour naps.  Loud noises don't really bother him, although he has recently started holding his hands over his ears when the baby cries.  He doesn't really throw extreme tantrums.  I mean he gets mad when he doesn't get his way, but he's three.  He gets over it about five seconds later.  He makes good eye contact and loves to interact with people.  Anyone who comes to the door gets a big "HIIII" and a smile.  He climbs right up on laps of people he has just met.  And one of his favorite things to do is wrestle around and rough house.  He's just an awesome kid!

He is an extremely picky eater, which is one of our biggest struggles right now.  He's not yet potty trained, although I feel like we may be able to give that a try very soon.  His communication is probably the hardest thing right now because he just doesn't know how to tell us what he wants or needs.  This is getting better and we feel like he's making progress.  He will sometimes walk closely to walls and look out of the corner of his eyes.  Or do other little quirky things like this that seem so silly, but there's obviously a reason for it.  He isn't obsessive over anything specific, but he does love balls, balloons and bubbles.  He's honestly such a happy boy.  We have a lot of hope that with some extra help and attention, he is going to do really well.  The therapists said they think we will be amazed at how much progress he will make in the next year.  I hope they are right!

Since this is all so new for us, I have so much to learn.  I found a workshop around me a couple weeks after his diagnosis.  About 5 minutes into it, I had tears running down my face and I almost got up and left.  I didn't think I was ready for it.  But I stuck it out and I'm glad I did.  I hope to be able to attend other things like that one in the future.  I also love reading other blogs and connecting with other parents so feel free to reach out to me if you want to share your blog or Facebook page.  I would love to follow along in your journeys.  I have enjoyed reading all of the other stories in this series and when I thought about if I should offer to share our story, I didn't think I'd have much to offer since we're so new to this.  My feelings are still so raw and I was almost embarrassed to share them.  I feel like my emotions are constantly going in a circle - grief, denial, anger, depression, jealousy - they're all there and sometimes one of them sneaks up on me when I'm least expecting it.  These past four months have been full of frustrations from trying to get him services at the school, to finding out our insurance wouldn't cover therapy, to mountains of paperwork, to people not responding to my phone calls.  The doctor was right.  It seemed like every day there was a new battle to fight.  But I have my gloves on and I'm ready for battle because my son deserves it.

Thank you all for reading!



Follow Amy's journey at her FB page, New Normal, Same Sweet Life and also at her blog, with the same name.

**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to join us daily at the GJOP page. 

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