History

You are reading about the journey with my son, Alex, who was recently diagnosed with Verbal Apraxia and slight sensory issues. In this first entry I'm going to try and give you some history about Alex. I will probably remember a thousand things later to write about that I missed the first time. Alex was born on Valentine's Day 2002. He was 8 lbs. 4 ozs. and just perfect! Alex began experiencing severe colic shortly after coming home and was just a plain unhappy infant. He cried all waking hours, unless he was nursing. Sleep even seemed uncomfortable for him sometimes. So much of his first year is a blur to me. He spent a lot of time sick with allergies, chronic ear infections, and tonisillitis. Alex began saying his first words at about 7 months old, calling me "ma ma ma ma" and saying "da da da da", etc. Just as quickly as those first words came, they disappeared. Tubes were placed in his ears by one year old and he hasn't had an ear infection since, Praise the Lord! After receiving the tubes, I was told by doctors and nurses that it would be "no time" and he would be talking again. "No time" became six long months and still no intelligible words. All hearing tests came back within normal limits, and continue to do so. At a follow-up appointment at 18 months old, his pediatrician recommended Alex for Early Intervention therapies. At this point, I continued to hear from family and friends, "he'll grow out if it... he's still so young, don't push him." I had to make a very important decision for Alex through prayer. I felt like it wouldn't hurt him to have the services, it could only help! Now that I look back, I'm very thankful that I felt led to go ahead with his therapies at that point, to give Alex a good head start! Paperwork and meetings, and more paperwork... we got the ball rolling! An IFSP (Individualized Family Service Plan) was drawn up and we made simple goals for Alex. By September of 2003 Alex had a speech therapist coming to our home once a week for one hour. We then learned of a center-based program that would allow Alex to go to classes twice a week. The program was based out of a regular childcare center. Alex had his own Early Intervention teacher that would work with him (and a couple other EI kids) alongside the regular daycare kids. Whatever they would do, Alex and the others would do. If it was circle-time, Alex would join in. If it was art time, Alex would join in. It was actually a great idea, being that the regularly developing children in this classroom setting could be a good model of speech for Alex. We decided he would also have his one hour a week therapy session at the center. Alex's independent skills have grown so much since starting these classes. He went from having severe separation anxiety to running right in to his classroom (no looking back!) and joining his friends. All of his teachers and therapists have been wonderful. However, Alex's progress remains extremely slow. One year and another IFSP later, we realize we're rewriting most of the goals from the previous year that Alex has still not mastered. We decided that Alex wasn't making enough progress and we needed to try doing speech therapy twice a week for an hour each session. Recently his speech therapist told me that Alex was one of the worst cases of speech delay she had seen. That's when I realized we were dealing with more than just a "developmental speech delay". I began doing my research and found that Alex's symptoms closely followed those of Verbal Apraxia or Childhood Apraxia of Speech. His speech is mostly babble, "ba ba ba" or "buh buh buh" standing for most everything, although he does use intonations of sounds to create language. His receptive language skills continue to develop, making a larger gap between what he understands and what he can actually express through speech. What started out as a 27% delay in expressive speech at 18 months old has turned into a 54% delay at age three. Alex has made some progress, although slowly, and very inconsistent. One thing that has always puzzled me was how Alex would learn a new word one day and then the next week you would not only no longer hear the word, but if he tried to say it, it would not sound like it was suppose to. It was as if he learned a word and then lost it completely. Alex has very little spontaneous speech. Spontaneous speech that is developing at this point is "thank you", "bye" and ironically "pee pee" as he is potty training, and very successfully might I add! His personality has changed from a very unhappy infant to an extremely entergetic, happy toddler. He does have frequent bouts of tantrums when he is trying very hard to communicate and he's frustrated at the lack thereof. It is frustrating for the whole family and I have shed many tears and prayed many prayers over this absolutely PRECIOUS little boy. We recently got a diagnosis of Verbal Apraxia from his speech therapist. He also has some sensory issues. He often covers his ears (daily) when he hears certain sounds. He is a very picky eater, not liking the textures of certain foods, even spitting them out. He also has a slight shake to his hands when he is doing something fine motor. This is all new to me and I'm researching as much as I can. I am looking into other ways of communicating with Alex at this point, non-verbally, such as sign language, etc. I know no one in a similar situation. I really seek support, but I also hope that somehow someday this journey with Alex and possibly this journal will help someone else facing a similar situation. If nothing else, it helps to know you're not alone. On Alex's third birthday (6 more days!), all of his services end with Early Intervention and he is transitioned into the school system. His first day is the day after his birthday! I'll write more on that later.....