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It all started when……

January 27, 2013

You know that feeling you get.. like a gnat buzzing around your head?

buzzzz

Yes, I’m sure you do.  It’s a nagging… won’t go away… no matter how hard you try to ignore .. feeling.   I had that feeling when my son hit 16 months old.  He wasn’t using a lot of language.  He could not sit still for even the smallest amount of time.   He would have the most horrible temper tantrums I had ever seen.  And he stopped eating a lot of the different foods he liked.  Not one thing taken on its own would pin point what the issue was.  And when I brought my concerns up with his Dr. she assured me he was a happy healthy boy.  That he would speak when he was ready, that lots of children give up foods at this point in their growth, and as for the running and not sitting still, well he was just an active child.  I attributed a lot of this behavior to the fact that both myself and my husband were AD/HD as children.  So we must have just passed it down.  He was  a happy, smiling, funny, sweet, affectionate baby/toddler.  Autism NEVER crossed my mind.  As he got a bit older, it was clear that we couldn’t even let him walk along side us.  He had to be in a stroller, on a leash (which is something that gets a lot of rude comments from the general public, but more on that later) carried in our arms, or a firm death grip on his arm. He had no sense of danger.  No fear.  He would run straight into the street, or straight into the path of a car in the parking lot, or straight into the ocean when we took him to the beach.  So started the feeling of terror anytime we left the safety of our house.  Just walking out the front door and too our car was a feat, and had to be choreographed between the two of us.  I could never go grocery shopping by myself with him or do any other errands.  It was just safer to stay home.  We still tried to do the things other families with children our age where doing.  And so we decided to go to the beach.  Santa Cruz Beach Boardwalk to be exact.

bbeach

The beach of my childhood.  So many fun memories for me.  I wanted him to have the same.  And as I look back I realize I was WILLING IT on him.  It was this day that all these behaviors smacked me upside the head.  We got to the beach, wheeled all of our beach “fun” out to the beach (blankets, beach chairs, sand toys, buckets, ice chest….) and put the life jacket we bought on him.  Without skipping a beat, he ran straight for the water.  Straight for it, to my horror.  Never stopped for one second to look back at me as I screamed,  or at my husband who was trying to catch him.  Catch him he did, with both of them going in the water.  And he dragged him back to our set up, with me almost in tears and shaking, my husband wet and mad, and our little guy having a melt down because he didn’t want to stop…. I said to my husband “We will never get to do what other families do.  We will never get to just come to the beach and relax, or go to the mall and have him walk next to us, or let him play out in the front yard or even just take a walk in our neighborhood”  And I started to cry.  I knew there was something going on.  I watched the other children out on the beach that day, watched that they listened to their parents when told to stop, where able to sit and dig in the sand, and eat their lunch without having to be held…. I knew he was different and I was mad.  Yes… Mad!  Who was I mad at?  I don’t know.  Not so much him.  More so myself, God, the universe, fate, JUST MAD.  Selfish I know.  But I remember looking down at him when he was a tiny baby and  just envisioning all the great things we could do, the fun we would have, and it seemed we couldn’t do any of it.  I felt I was failing him.   Now I know I wasn’t failing him, I just didn’t know what to do for him.  I had to learn.  And it was a steep learning curve.

14369411-steep-learning-curve-drawn-on-white-paper

With in a few weeks of having our second child I knew we had to do something. His behavior was getting so out of control and I knew I didn’t have the tools to deal with him and a newborn.  We needed help and we had to get testing of some sort done.  With all the budget cuts in our area it would take more than 6 months to have the school district even met with us to decide if he could be tested.. blah blah blah.  I remembered reading an article in our newspaper about a clinic up in the foothills (an hour away from us) that specialized in testing children for AD/HD and Autistic Spectrum disorders. Mind Matters Clinic in Murphys CA to be exact. (if you are in our area and need help I can’t recommend them enough.) I called almost in tears and set up an appointment.  I felt like a failure and like a weight had been lifted off me at the same time.  Doesn’t make sense does it?  Yeah, I know… This life of Autism is like that!  So our first appointment with the Dr. was stressful and eye-opening.  Our son ran around the office the entire time, getting into everything, even pulling things off the walls.  It was a good thing so the Doctor could see what was going on.  But the thing I will remember most from that meeting was explaining to the doctor that we can never let go of our son’s hand, that he runs and bolts.  The Doctor looked at both of us and said “It’s so terrifying isn’t it?” I had tears in my eyes and said “Yes it is”.  HE UNDERSTOOD!  Not many people do.  I knew we had made the best choice in bring our son to this clinic.  So started the rounds of testing…… and more testing and even more testing… with our final meeting to discuss what they had found.

Intricate question

I was sure they would tell us he was AD/HD.  Positive.  1oo%.  And then came the talk and diagnosis.  He was on the Autism Spectrum.  I couldn’t even listen.  I wanted to scream NO NO NO!  My hearing became almost tunnel like.  I couldn’t look at my husband or I would burst into tears.  I was so angry!  I remember looking at my son who was in the room with us and thinking, there was no way.  He was affectionate, he was funny, he was sweet, he was…. NOT AUTISTIC.  I wanted to throw the report in the garbage can.  But I remained calm and tried to ask questions.  I couldn’t tell you what questions I asked, but I knew I needed to ask some kind of question so they knew I was listening to their “talk”.  I could feel my husband’s anger too.  So I knew we had to straighten up.  Next up we had to met with the doctor again and go over the testing report.  I didn’t think I could do it.  I just wanted to go home, crawl into bed and cry myself to sleep.  But you do what you gotta do.  And we  met with the Doctor…..who was so positive!  He said our son was mild and very well have a diagnosis change has he grew older (that means either grow out of or adapt) They also said he had a VERY HIGH IQ…. something we had figured out on our own.  And in my opinion, probably what part of the issue is!  The Doctor told us to remember this was a marathon  not a sprint.  We had a lot of work ahead of us.  We left the clinic for the long drive home with our son having a melt down in the back of the car while I cried and my husband fumed the whole way home.  I remember saying “Welcome to Autism” and hitting the steering wheel with my fist.

images

We had a second opinion done, not because we didn’t believe Mind Matters (we sure did) but because to get services here in our school district we had to go through an agency here in town.  The second opinion was the same as the first but this doctor also said he was AD/HD .  Now on to getting him help.  The school district couldn’t be bothered at the time I called because the school year was almost over with.  Yes, true story.  So we decided that we HAD to do something. We couldn’t sit around and wait.  And although there were some people who couldn’t understand why we didn’t just wait for the “free” help, I didn’t and wouldn’t do that to my son.  So we enrolled him into a private socialization class through Mind Matters Clinic. Yes we had to drive an hour to his class and hour back 2 times a week, but it was a god-send.  Not only did it help him, but his teacher (who I adore!!!!) taught me so much.  Taught me how to use a visualization board at home, what to do with melt downs, calming techniques, and more.  I will never forget all she did for us and still does!  And while doing this socialization class we also were doing more testing to see if there was anything supplements would do for him.  His Doctor thought that using L-reduced glutathione could help.  We were up for anything that could help and started him on that treatment.  Guess what????  It worked!   His melt downs, his concentration, his compliance… all improved.   Meanwhile, I dove into reading and research about Autism.  I would read so much that I would make myself upset.  But there are 2 things worth reading I would recommend to anyone going through their first few months after the Autism diagnosis:

 Autism speaks First 100 day tool kit

This tool kit helped me to *hang on*  It helped me to actually say the words “my son is Autistic”  and to share with people.  Without sharing this, I’m not sure what I would have done.  I have made some wonderful friends through this and feel empowered that I can help my son and others around me to understand and accept Autism.

10 things every child with autism wishes you knew

This book blew me away….. if you just click the link you will read the 10 things… and you will look at an Autistic child with a new set of eyes.

preschool

FINALLY after having to be a Mama Bear and send some pretty aggressive letters to the school district we were able to have him accessed.  The assessment team was absolutely charmed by him.. as are many.  And told us they had never seen another child like him.  Too which us Autistic families say… If you have met one child with Autism, you have met one child with Autism!   He was placed into a preschool program for high functioning autistic children.  5 days a week 5 1/2 hours a day along with riding the bus home.  OH BOY!  What a change for both him and me!!!  (and his baby brother too) The house is quiet for 5 hours!   He’s quick at learning the rules and how to play them.  He is also slightly tired when he comes home which is a first.  And the fear I had in him riding the bus home were squashed once I met the driver and saw what a sweet lovely man he is.  Off we go on his school career.  And I know it’s so important to make this as positive as we can.  We have lots of work ahead and we all have lots to still learn.

It will be a year in April when we got the first diagnosis of his Autism.  I know I have changed.  I’m not the same person I was. I couldn’t be.  I’m the Mommy to an autistic son.  He has taught me so much.  autism-heart

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8 Comments
  1. Samantha Lemons permalink

    Loved reading your blog. I look forward to reading more. Your story sounds a lot like ours… times two! We have twins (both boys). Both act similar to your son. They’ve been in the ESE VPK class for a little over 6 months now. They’re doing great. Payten, the older twin, has grown out a lot of his “dangerous” behaviors. However, you can’t keep your eyes off of him. Jayden, the younger and more “autistic” twin, is a little maniac. He is all over the place, gets very upset, is stubborn as all heck, and has NO fear. I have never seen a child so fearless…. it’s almost impossible to not have a nervous breakdown on a daily basis. Their behavior has gotten us a lot of looks, stares, and rolling of the eyes… it used to be because they were twins and “oh how cute” they are… now it is because they are running around, screaming, being physically violent, and just out of control. I’ve adapted and so have other family members. Their behavior at school is great (so says their teachers), but I do see some change at home since they began their early-intervention. On another note, I stopped giving them cow’s milk… and WOW what a difference!! The tantrums and meltdowns are much less frequent and intense! I highly advise anyone with a child on the spectrum to get rid of the milk!

    • NO FEAR!!! YES YES YES!! It’s exhausting, which so many don’t understand. We know we just can’t let them run around at the playground with other kids, because they will run straight for the street instead. I love when I find people that get it. Welcome and please share whatever advice you have! We are all in this together. 🙂

  2. Stacey Palaszczuk permalink

    Your story is so familiar! We had similar things happen to us. The no fear thing especially. We used to call Gabe “Stuntman” because he jumped off everything.

    Nice job Aliece. Keep writing. Our children are all so different that every voice that is heard has so much value in teaching. xoxo

    • Thanks Stacey! He’s got a shirt that says.. “I do all my own stunts” He’s such a daredevil. Someday it might serve him well. 🙂

  3. Reblogged this on Coffee With A Side Of Autism and commented:

    It’s been a year since my son was diagnosed on the Spectrum, and it’s also Autism Awareness month. So I thought I would re-blog my first post. He’s come such a long way in just a year. He’s such an amazing kid ❤

  4. Beautifully written! I am so glad Kevin will have this blog to read when he grows up. You are an amazing mom and woman!

  5. I’m so glad I’ve stumbled into your blog. You are a great writer ! It’s nice to read the thoughts of people who understand …

  6. “We will never get to do what other families do.” I have said this a million times. Although it is ‘better’ now, it still isn’t where it should be. Cooper has no words and is VERY loud. Church is awful. I leave sweaty and exhausted. Stores are hard. Family events are hard. I am so jealous of other families…most of them are my friends. I am getting better with this every day but it’s still a struggle. Love this post!

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