And so it has been 1 year......

So it has been a year…..

April 16, 2009……..

The events leading up to this day were not easy.

On March 23rd, (I only remember that day because it is my sister, Anna’s, birthday) – we took Alexis for her 15 month check up.
Matt and I had been fighting constantly for weeks, because he was sure there was something wrong with our child, because she had not made a sound in nearly 3 months….wasn’t responding to her name, and would not turn to her name when we called her.

These were all things she had been doing up until shortly after her 12 month checkup.

I argued with Matt that obviously, she was mastering other skills, such as climbing – and exploring, and that perhaps this had slowed her language.
Deep down inside, I knew I was wrong, but I wanted to be right so bad.

We asked the doctor to screen her for delays, and she pulled out a checklist (I guess it is standard that all kids are to go down this checklist at 24 months).
I allowed Matt to answer most of the questions.

The doctor seemed very uneasy – and then she handed us a few referral slips for speech therapists – and a developmental pediatrician.

That evening – after we got home, we both sat at the kitchen table and cried profusely. We officially knew there was something wrong with our daughter.

The morning of the speech evaluation was the following week. I went in with so much hope – that the speech therapist would simply tell us she was a little behind. After the evaluation – she told us that Alexis was at the level of a 6 month old for speech and language.

What happened to the way she used to scream “doggie!!” when she saw a dog – or Kona?
What happened to her saying “bye bye” – and “hi!”? Where did “mama” and “dada” go?

She looked at me as if I was crazy and perhaps if I had imagined these things. I have it on video – my sisters saw – Matt saw – I have witnesses.

She asked me if there had been a “trigger” – perhaps a high fever? I said…..no fever – just very sick after her 12 month checkup – vomiting – we had had to take her to the ER – but that was all. Oh – and we had started giving her regular milk in the process as well.

I went home and googled “autism and milk”. At this point, I was unwilling to say the word “autism” – out loud…..but I already knew.
I learned about how some children with autism respond better to outside stimuli when you safely remove all dairy, wheat, gluten & casein from their diet. I read more and more – I discovered that a DAN! (defeat autism now) doctor could help us put her on herbal supplements that could also help her.

We immediately started the diet (I mean – I drove to Kroger at 11pm to buy whatever I could that was gluten, wheat, dairy & casein free THAT NIGHT!!).

The next step was the hearing evaluation.
I remember before the evaluation – I got down on my knees and prayed so hard that she had just gone deaf! We could deal with deaf! We couldn’t deal with the “A” word.

Her test was normal.

The following Monday – my favorite person in the whole world (and I mean this from the bottom of my soul – other grandchildren – if you are reading this – please back me up!!) – My Grandma Anabel Smith – passed away.
I was devastated that she was gone – and I had been so wrapped up with Alexis – that I hadn’t gotten to tell her goodbye. I hadn’t even called her.

Monday – heard the news about my Grandmother – Wednesday was April 16th, and it was our time to see Dr. Rubin – the Developmental Pediatrician who could give a proper diagnosis. (There are only 5 doctors like him in Georgia – and if you want to see him quickly – you have to pay $1,000 and file your own insurance – otherwise – you sit on a waiting list for 6 months just to get a diagnosis).

My mother-in-law, Nancy (she is truly an angel) – flew in for the week – as I was going to have to leave on Friday to go on a 6 hour trip with my mom and sisters to my Grandmother’s funeral.
I remember Nancy’s kind and gentle way, and how she brought us comfort during the appointment.

Well – it was diagnosis time. Alexis was diagnosed as PDD.NOS (Pervasive Developmental Disorder – Not Otherwise Specified) – a very nice way of saying Autism.

My heart sank. It was official…..and where were we going to go from there?
Dr. Rubin suggested “Floortime” – getting into “Babies Can’t Wait” (the state run program for disabled children age 0-3), Speech Therapy – Occupational Therapy – and as much one on one time as possible.

We were overwhelmed to say the least – and heartbroken.

Who was this child of mine? Where did she go? Where was the light in her eyes? Where was her smile? What was the future going to hold for her? Would she have to live with us forever??

We didn’t know. And we still don’t know.

It is too hard for me to talk about my Grandmother’s funeral that occurred 3 days after the diagnosis, because it all felt like an out of body experience. It was very traumatic – especially since my sister, Anna, was so sick the morning of the funeral – that she couldn’t even go in – and she couldn’t get out of the car for the graveside service. We had to take her to the hospital because she was so sick.

I broke down and started crying hysterically when they were having the luncheon after the funeral – there were relatives everywhere who wanted to talk to me – Matt called me from 6 hours away - Alexis was screaming in the background – and Matt was asking me if he should take her to the ER – while I was just trying to fix a plate for my mom – and get my sister to the closest hospital.

My cousins were so kind to me – they came and wrapped there arms around me – especially Matthew.
And then to later see Margaret and Nathan –my Uncle Bill and Aunt Patricia at the hospital was so comforting. They were so kind to come.
I still had not told them about the diagnosis. It was a weekend to mourn Grandmother – not Alexis.

I knew on the way home the next day – that Matt & I were facing what seemed like an insurmountable task.
We pushed through – got her into programs, speech, Occupational Therapy – ABA – Floortime – met other parents – hired someone to be at the house for 1 on 1 time during the mornings from 8-12 – and worked with the DAN! Doctor to continue with biomedical treatment for Alexis.

She started signing – she started using her voice and making sounds again – she started communicating! She started getting excited to see us, and she started responding to her name more and more.

It has been one year since this nightmare began……

We are blessed that I am able to stay home with her now, and be with her. It is not easy, but we are so lucky to have found the strength and resources to put together all of this for her.

This journey is far from over – and we don’t know what lies ahead.
She has surgery this Thursday, because she has so much fluid in her middle ear that it has turned to gel. She has basically been hearing as if she is underwater – and there is so much pressure in her head – that she is in constant pain.

The doctor is hopeful that it will make her feel better – and maybe learn to talk. We are not expecting a miracle – just praying for one.

My thinking has changed. I do everything as if she is going to grow out of this and become “typical”. Maybe a little quirky – but typical.
College fund – Savings for her future……and lastly – I made a decision to buy a $2,100 wedding dress for a TINY ceremony Matt & I are having in August – in Destin.
We are only inviting immediate family – so everyone will only get to see it in pictures.

Matt asked me – WHY I was spending that kind of money on my dress, my headpiece and my veil……

My answer? So I can preserve it – and give Alexis the choice (even though she may hate it) – of wearing that dress in her wedding.

I will never give up on my daughter – and I know Matt will never give up.

Thank you for reading this.

April is Autism Awareness month – feel free to pass this story along.


Sincerely,

Sarah