7 Years Ago…Our Lives Changed Forever
Seven years ago at this moment, I was sitting in a hospital bed awaiting the birth of our first child. At the time, we did not know if our first child would be a boy or a girl. We were overwhelmed with the wonders of who our child would look like, what to name said child, and PAIN. Well, I was only feeling some of the pain thanks to an epidural but I felt pain none the less.
Now, I feel it necessary to write about Little T’s story so our newest readers have a chance to understand a little bit about him. He’s had a few bumps in his life to date so we’ll start at the beginning…
My pregnancy with Little T was fairly uneventful with the only real problem was when ever I ate anything that had cilantro as an ingredient. Cilantro gave my horrible heartburn which was a huge deal for our Mexican food loving family. His birth, on the other hand, was much more eventful. Prior to delivery, he breathed in meconium and was not breathing upon delivery. He recovered fast but none of this prepared us for what we’d face over the next few years.
He hit all of his milestones on or before the “expected” date. Well, all except talking. He walked early. He danced early. He ate early. He grew fast. He counted early. He could add and subtract up to 5 early. But he didn’t talk like others his age and we knew something was wrong. We got the normal ‘He’ll catch up’ or ‘Einstein didn’t talk until he was 3’ or ‘It runs in the family so don’t worry’ but that didn’t stop us from worrying. By the age of 2, our pediatrician was in agreement that something was going on so we began a myriad of testing. We did a standard hearing test. Inconclusive because he was unable to vocalize his answers. We did a sedated hearing test. Perfect score, the little bugger hears better than the average child his age. The technician just kept going to see how well he could hear. She gave up long before he stopped hearing. We saw our fair share of doctors who tested him for autism, aspergers, other spectrum disorders, ADHD, ADD, and many other neurological and speech disorders.
After all of this we were told, “He has Apraxia.” And off Tim and I went in search of an answer. What is Apraxia? Does he need speech therapy? Will we ever understand him? What can we do to help him now? And every other question a parent has when faced with the unknown.
Now you may be wondering, “What is Apraxia anyhow?” In a nutshell, Apraxia is a speech disorder where the brain tells the muscles what to do but the message gets jumbled between brain and muscle. Little T talks and talks A LOT but most of what he says is not understood by anyone. Over the years and through the speech therapy he has received, he has gained some ground on what we understand. If I had to put a number on it, I’d say we probably understand about 25% of what he says right now.
As we grew to understand Apraxia and all the challenges we faced, Little T began preschool through the early intervention program. And, as expected, his frustration of not being able to communicate grew. At one point, both Tim and I were at a complete loss because Little T’s violent tempers became uncontrollable and down right scary. Thankfully, Tim stumbled upon a wonderful doctor that was understanding of our wishes to try non-medication options before resorting to medicating Little T. We were told that more than likely, Little T also has ADHD but wanted to wait to make a complete diagnosis until we could get some of the speech under control because it was possible that he would lose some of the signs if he could communicate. And to help us with Little T’s behavior, he informed us of an herbal remedy (Valerian Passionflower) that has been showing benefit in overseas experiments. We began using those drops and within 6 months, Little T’s temper and violent tendencies were reduced by half. Within a year, we saw very few outbursts and the few we saw were mild in comparative to the ones he had before the drops.
Of course, not understanding 75% of what your child is trying to communicate is the frustrating part of our world. Little T can walk into a room and spend 5 minutes trying to tell you something only to walk away frustrated that you don’t “get it.” We resorted to pointing, hand signs, and physically showing us what he meant but that can only solve some of his thoughts. Thankfully with the help of a fabulous company, Prentke Romich, we have an AAC (augmentative and alternative communication) device called the Vantage Lite.
This little device is an electronic communicator that is slowly saving our day. It has taken some time for us to understand how to use it and go through trainings but it has all been worth it. This device has given Little T the power to talk to us about everything that is new and exciting with him. He absolutely loves the device but complains that it’s too heavy. I cannot wait for smaller electronics to become more durable because someday, he will be walking around with a device the size of a netbook or iPad and it will power his communication with the world.
And if you give him 5 minutes, he will tell you EVERYTHING you didn’t want to know (or maybe you do) about his favorite subject: Wrestling. He has an entire page that I created dedicated to the uncommon words found in the fantastic world of wrestling along with about a dozen or so of his favorite (and some not so favorite) wrestlers.
Now that we have communication increasing day by day, we started to tackle sleeping. Little T has NEVER been a good sleeper. He could be awake for 24 hours only to fall asleep for 2 hours and be up for another 12 hours. He was as inconsistent with sleep as a newborn baby. No matter how we set up his routine, he never got into the sleep habit. We investigated a variety of herbal sleep remedies in hopes that we could at least slow his brain down enough for him to realize he was tired and allow him to get a decent night sleep. We tried various things and nothing worked. That is until we found Sleep Assure, a lemonade flavored herbal sleep remedy. After a few nights of using Sleep Assure, we have conquered the sleep issue. He has faithfully gone to sleep every night for the last 6 months and has slept through the night almost every night. This has been wonderful. Tim and I finally get to sleep through the night without one of us having to be up on Little T patrol.
Happy Birthday, Little T.
As always, I love to give back and I started afor Little T to help his fellow superstars. Donating helps create better futures for children with speech apraxia. Both Tim and I have received numerous pieces of advice and words of encouragement from the Apraxia Kids listserv. Simply knowing that we are not alone in our battles from potty training to picking the right communication device and that others are there to share their trials and tribulations is amazing.