As many of you know, April is Autism Awareness Month.
Recently, I became aware of a dear friend who has two (yes, two) children suffering with this disorder. I wish I knew more about Autism to write a opening to her story, but I don’t. I am at a loss for words.
Many moons ago, Tess and I worked together at my parents company in Charlotte, North Carolina. Tess’s personality could light up the darkest room. You’ll see that in her story below. She’s an amazing mother and wife. Whom, along with her husband, have declared war on Autism. Get your tissues handy.
~We always wanted a girl. We had two beautiful boys already but something always felt incomplete. I mean I was a ballet dancer! She was our only planned pregnancy and the day we found out we were expecting a daughter was definitely in my top 5 happiest moments ever.
My pregnancy was for the most part pretty run of the mill. We had a blast getting ready to take down the blue and red and put up the pink and purple. My older boys were super excited about having a little sister and the anticipation was unreal.
In August of 2009 we got to meet our little Mia. She was so gorgeous. The palest, silkiest skin imaginable, she looked like a little Snow White with her perfect rose colored lips. She had beautiful hazel eyes that we could stare at for hours. She was a perfectly “normal” baby. She slept through the night on time and met all of her milestones on time. No one could prepare us for the hail storm that was only around the corner.
Things were going along nice and calm for awhile until we were surprised to discover that we were expecting again. This time a little boy. Sammy. They are only 14 months apart.
Sammy joined our brood (commonly referred to as Team Walters) in October 2010 and was by all accounts another perfectly “normal” baby.
When Mia was about a year we started to notice that she wasn’t doing what all the other children were doing. She didn’t speak and had extreme and violent melt downs. She didn’t liked to be touched and would have horrific screaming “sessions” for hours on end in the middle of the night. She would strip off her clothes and refuse most of the time to wear anything (diaper included) at all. I would listen to my friends tell me about their littles with such jealousy and fear because my perfect little creature was not in any way shape or form close to functioning that well.
I started to research how to get her to sleep in a diaper and tried all the tricks, all the different styles of pj’s, zippers and buttons, clasps and even backwards diapers. Nothing worked and it seemed to only make her more upset. All the stories I would read a single word kept appearing over and over again. At this point it was only referred to among my friends and family as the “A” word. I wasn’t ready. I did however make her an appointment with her pediatrician. Who pretty much blew it off and labeled her as “developmentally delayed” and refused to even investigate the possibility of the “A” word.
This wasn’t good enough for me. It didn’t seem like the right call so I made a few myself and scheduled her a hearing test (which came back normal) and an evaluation with the early interventionists in my area. We had to wait only about a month but it felt like a year. Once the crew of specialists came and made their assessments, the “A” word became….Autism. High functioning with Sensory processing disorder (SPD). It felt like a ton of bricks had just been thrown onto my soul. My daughter? My only daughter? She is supposed to be “perfect” she is supposed to be a ballerina. What about her prom? What about her first date? Are these things all gone?
I was really angry for awhile. Then incredibly sad, but finally after a few weeks I put my big girl panties on and stapled my thick skin back together and started advocating for my daughter.
Within a few weeks she had started therapy. Occupational, Speech and Play (CBRS). Words cannot describe to you how much these women mean to me for reasons I will describe to you in a bit.
While all this is going on don’t forget we have little Sammy who in all honesty wasn’t getting my full attention emotionally (he wasn’t neglected or anything like that but it wasn’t until my world stopped spinning that I began to notice some irregularities). Sammy was just a little bit over one when we saw that he had stopped responding to sound completely. He was never a very social baby but now it appeared he only would make eye contact or interact with me. He wasn’t speaking or making any attempt at sound at all. He was hypnotized by one show and one show only. (The Backyardigans). Something was amiss and I was going to figure it out.
I took him to our pediatrician who tested his hearing and he failed that. No surprise there. So she referred us to an audiologist. We went through the sound booth testing and again no surprise he failed that too. Next stop to go have a BAER test (Brainstem audiotory evocation response test) to see the full extent of his hearing loss and be fitted for his hearing aids or maybe a cochlear implant.
My amazing husband had been trying to figure out a good way to tell me for a few weeks at this point that he thought there was something more going on with Sam. And, in his defense he did try a few times and I blew it off and said “No, No, No, it is his hearing, once we get him his hearing aids or cochlear implant everything will be fine. You’ll see”. As you can probably guess, it wasn’t. I did finally let him convince me to make the call that I had just made for Mia and get him evaluated also. The same group came out and tried to be as positive and upbeat as they could since they were indeed the folks who were just in my living room 6 weeks prior breaking down my vision of the future, but they had to be honest. Autism. Again. This time everyone jumped on my bandwagon and said “let’s see how it goes after he gets his hearing aids……..Maybe he isn’t as low on the spectrum as he presents.”
We finally went for the BAER test about 5 weeks later and his hearing was perfect. Absolutely no problems to report. You might think YEA! his hearing is fine that’s great news, but that is not how we took it. My thinking was that if it was his hearing then I could fix that. I have a compulsion to fix things but the problem lies within the brain. This is the Autism, I can’t “fix” that but I can help him.
So we delved into therapies, which wasn’t to much of an adjustment since Mia was already receiving them. Pretty much instantly Sam started Music therapy (Mia did too eventually), Occupational therapy, Speech therapy and then he also works with a certified speech and sign teacher. The dream team. Don’t underestimate the power of a spectacular group of therapists.
Fast forward to now. My hubby and I refused to let the Autism define us or our children and have started a war with it. We research and absorb everything we can. We are actively learning sign language and therapy techniques. We have even taught our older 2 to sign and they have embraced it. We are a signing home. We are in the process of making Sammy’s bedroom into a sensory room for both him and Mia to utilize. We currently have a fundraiser going to try to buy a therapy swing for Sammy. (link provided at the bottom if your interested to learn more). We have therapists in our home daily (most days more than one). Autism has made us better parents and made us understand why these children are called “Special” needs. Everyday they teach us something new and make us appreciate the smaller things like Sammy learning to clap his hands a few weeks ago or Mia actively showing compassion for someone else.
Here is what is going on with the kids as of today.
Mia is doing amazing. She has been using functional speech for about 3 months and can sign over 30 things. She understands more than 50 signs. She is on the GFCF diet and that was amazing for her behavior. She rarely becomes violent and can recover quickly when she becomes upset. She doesn’t have the night time fits that much anymore and has been wearing clothing consistently during the day. (the night is still a challenge for her but we will get there). Her therapists are rock-stars and have helped her so much. She now can tell me her needs, she knows her colors, shapes and about 75% of her alphabet. She has begun to try to pretend play which is amazing to watch. Just this past weekend we had a tea party. (I cried for an hour once it was over).
Sammy makes better eye contact with almost everyone. He is learning to play and has a few favorite toys that he consistently attends to for more than 1 minute at a time. He is trying to sign “more” (it looks like clapping now but WHATEVER) and the biggest change to report is that he now loves his dad. After a year of not letting my hubby barely look at never mind touch him he now goes to him for love, support, comfort and snuggles. He has the greatest “quirks” instead of using his hands to feel things he uses his feet. He makes elephant noises when he is happy and loves to clap his hands now that he has figured out how. He is de-sensitizing sound a lot slower now and will play peek-a-boo with me.
Autism isn’t what I thought it was going to be (at least not yet). I know that my littles are going to face some major hurdles in their lives more so than “typical” children but I am ok with that. We will face them together.
Here is the fundraiser link if anyone is interested in helping! Once my littles are not able to use this swing anymore it will be donated to a family that needs it.
“Different, not less.” – Temple Grandin
I love this, “Different, not less”. So true old friend, so true!
You can read Tess’s story and others at http://www.mostlytruestuff.com/.