First Day of Preschool

Finally, all better... Alex was ready and excited about his first day of preschool! When we got to school, his teacher met us at the door and Alex ran right on in smiling. He took a good look around the room and said "Woooooooow!" I was so excited to see his excitement! He ran right over to play with the other children. We got settled in and I got a few questions answered when I felt like it was time for me to go. He was doing just fine. I told Alex to have a good day and that I'd be back later and he said "ank ewe, bye!" I was so proud that my boy adjusted so well, and so quickly. In just the half hour that I was there, the teacher noticed and mentioned that Alex has a "shaking" thing going on with his hands. I guess because I'm around him so much I don't notice, but his speech therapist mentioned this at an earlier time as well. I don't know what this means, necessarily... maybe it was his excitement. The speech therapist said she notices the shake when he does something fine motor. His progress report from today said that he had a great day. He was very active and happy, and did extremely well participating in circle time (staying seated with the group). He had speech therapy today. He also had three successful attempts at the potty! Alex is going on two weeks now and no diapers! Yay! I couldn't be happier with Alex's first day of preschool. I think he's going to love it there. Now, on to the next concern... how much progress will he make? Right now we are seeing a little more spontaneous speech from Alex. I've noticed especially the last few days. If he kicks a balloon around, it's "ki(ck)". If he's cold, it's "ode"... and if it's loud, it's "woud". These are words he's using on his own. Yay! He's also recently discovered that instead of dragging mama all around the house to do what he wants, he can hollar "Maaaaa!" and she'll come to him! LOL Pretty close to mama, right? (smile)

Party? Pooped!

The streamers still hang, and the cake is still untouched. What a long week this has been. Alex's fever broke, but he couldn't stop throwing up. He couldn't keep his medicine down, and I feared dehydration. He went back to the doctor yesterday. They gave us a new antibiotic that should be easier on his stomach, and a prescription to help with the nausea. The doctor said he would sleep. He slept from the time we got home around 1 PM until 8 AM this morning! When he got up this morning, he seemed to feel much better. I thought it was over (again) and yet again, he's curled up in the bed, whining and rubbing his tummy. I gave him another dose of the medication. I suppose he'll rest again tonight. I miss my baby! He did have some crackers and gatorade today which he kept down, and had a good bath. I felt better because he felt better. I want this to be over. I'm emotionally exhausted. Alex missed his entire first week of preschool. This morning we took Sarah to her preschool, which is usually when Alex goes to school too, so as we were heading out the door he grabbed his Thomas the Train backpack like he was ready to go too! What a cutie! He was perfectly content to stay home today with mama and play with his trains! I hope tomorrow is better...

Birthday Boy

It's early in the AM, and Alex is feeling some better. I feel like we missed his birthday yesterday, since we spent the afternoon at the doctor's office instead of celebrating at Chuck E. Cheese as planned. Alex has the flu. Poor baby, on his own birthday! He also has a double ear infection... first infections since the tubes at one year old. He's been throwing up since yesterday afternoon, until just after midnight. He slept most of the day yesterday and when he was awake, he only laid around pale and weak. His Dad and I got him a Thomas the Train battery operated train set for his birthday present. It was the only thing that brought a smile to his face yesterday. He laid on the floor and watched that train go round' and round'. Upon waking early this morning, the first thing I heard from him was "woo-woo?" He wanted his trains! He's feeling better this morning, but unfortunately he'll have to be on the antibiotics for 48 hours before he can go to school, so he will miss his first two days of preschool. He hasn't been able to keep the medicine down at this point. Depending on how he's feeling, we'll probably spend Wednesday evening celebrating his birthday. My boy is so sweet. As I would lay next to him cuddling and rubbing his back, I would whisper, "I love you" and I could hear him whisper back "I uh ooh too".

What is Verbal Apraxia, anyway?

Verbal Apraxia (also known as Developmental Apraxia of Speech or DAS) is a neurologically based speech disorder. It is caused by subtle brain impairment or malfunctioning. No one currently knows exactly what this brain impairment is or what causes it. Apraxia interferes with a child's ability to correctly pronounce sounds, syllables and words. It is the loss of ability to consistently position the articulators (face, tongue, lips, jaw) for the production of speech sounds and for sequencing those sounds into syllables or words. Generally, there is nothing wrong with the muscles themselves. The child does not have difficulty with non-speech activities performed with the muscles such as coughing, chewing or swallowing. However, the area of the brain that tells the muscles how to move and what to do to make a particular sound or series of sounds is damaged or not fully developed. This makes retrieving the "motor plan" for saying a word difficult.

As a result, even though the child knows what he wants to say, he cannot say it correctly at that particular time. Sometimes he cannot even begin. Either the wrong sound comes out, or many sounds are left out all together. These errors are not under the child's voluntary control so he often cannot correct them, even when trying his hardest. Frequently, a child will be able to produce a sound or word at one time and not be able to say it again when he wants to. A parent may hear words when the child is playing alone or when he is angry, but when asked to say the same word, he can't. This can be very frustrating for both the child and the parents.

For a young child with verbal apraxia, a limited speech sound repertoire is frequently the main characteristic of his speech. This simply means that the child has very few speech sounds that he can use automatically so he frequently uses a simple syllable (such as ba) to stand for almost everything. The length of a phrase as an adverse effect on articulation. Generally, the longer the utterance, the worse the speech accuracy. A child may be able to say syllables and short words fairly well but be impossible to understand in phrases or sentences. Apraxic children are usually better at imitating speech than at saying words spontaneously. If you ask a child to say a words right after you, he is likely to say it more accurately than if he said it without your model. Children with verbal apraxia may also lose words. Parents frequently report that the child "used to say that, but doesn't anymore".

Alex in Wonderland

I'm at home all day today and keep thinking of things to write in here. Alex is sick with a small fever and volunteered to take a nap. (gasp) I was sitting here thinking about a friend of the family who commented about Alex's behavior the other day. He called him "Alex in Wonderland". I wasn't sure how to respond, so I just kind of laughed and brushed it off. He does often seem to be in his own little "wonderland". I looked up the definition of the word just now and this is what I got... "a place of great beauty or wonder". Yeah, I can live with that. His life is beautiful to me. He sure keeps me wondering too! I wonder what he's thinking about when he can hear and understand everything around him, but he cannot communicate back to us through words. I know he wants to. He can use a few small signs and I'm beginning to understand a few words like "eee" means eat, "coe" means cold, etc. It's always the consonant sound followed only by the first vowel sound in the word. B's are often substituted, such as he can say "M" as in the alphabet, and sound out the "Mmmmmm" sound, but he cannot put the sounds together to say "Mama"... he substitutes with B, so it's "Baba". I'm very sad that my baby can't call me Mama. He doesn't even CALL me "baba"... it's just what comes out when I try to get him to say Mama. His new special education teacher told me yesterday (very nicely) not to over react... it isn't that uncommon for a three year old not to be able to talk. I don't think I can accept that right now. Something keeps bringing me back to the fact that he was calling me "mama" at just 7 months of age. What REALLY happened to my little (affectionately) Alex in Wonderland? (sigh)

I'm a BIG KID now!

Alex made it all night in his big boy underwear and still dry! After almost five years of diapering since my first child (and double-diapering for a while!), this is very exciting for mama! It's also a turning point. No more baby food, no more nursing, no more diapers, no more babies! My "baby" will be THREE years old on Monday! He still seems so much like a baby to me though considering his delays. When Sarah was this age, she seemed so grown up. I didn't see the baby fingers and cheeks that she still had, because she seemed so much bigger than Alex since HE was the real baby. I wished I had been able to appreciate it like I do with Alex. Alex still has that sweet baby smell and can still wear footie pajamas. I still want to kiss his little feet. Don't get me wrong... he's a big boy for his age. I guess mama's just trying to hang on to the last little bit of "baby" left....

IEP Meeting

Monday 2/8 was Alex's first IEP (Individualized Education Plan) meeting. He met the standards to be identified as developmentally delayed/speech impared, and qualifies for the developmental preschool through the school system. Alex will be attending preschool three days per week for just over three hours per day. He will receive a combined total of one hour of one-on-one speech therapy, plus group therapy as well. His first day of school will be Tuesday, 2/15, the day after his third birthday. Goals we set for his IEP were that Alex increase and retain vocabulary and be able to use spontaneous speech to communicate wants and needs with 2 to 3 word phrases.

I was informed at the IEP meeting that Alex would not be receiving therapies during the extended summer program as the preschool follows the regular school year, August - May/June. They base qualification for the services on the amount of regression a child experiences during a break from school. They told me there was not enough time to determine regression for Alex to be eligible for the summer program. I disagree with this, as I feel Alex needs continual therapy. His Early Intervention Speech Therapist strongly supports me on this issue. Not a whole educational program for summer, but one-on-one speech therapy. I spoke with the special education teacher today as I dropped of Alex's registration forms, about the summer program. In a nutshell I learned from her that the program exists, because it is the law, but it is really "unheard of" for a student to actually receive these services. In the 14 years that the special ed teacher has been teaching, she has not known any of her kids to receive therapy through the summer, except for one student who's parents hired a lawyer and ended up battling it out in court. What a shame that the school system here works like this. It all boils down to money. Unfortunately, our insurance company does not cover developmental delays, so we really can't afford private therapy. If we could push a diagnosis of "verbal apraxia" - a neurological disorder, etc., maybe.... but anything with developmental in the title is going to get denied such as "developmental apraxia of speech", as it is often called.

Alex received a Discharge Summary from Ms. Jane, his Early Intervention Speech Therapist. She stated that his speech production (articulation) is severely impared and showed minimal progress over 16 months of speech therapy. He has poor control over volitional tongue movements. His level of difficulty with his tongue movement and his poor articulation is consistent with developmental verbal apraxia.

We do continue to see progress here and there. Alex is very bright. He understands language. He can identify and name several colors. He even tries to count. He has been working on the computer since he was about 18 months old, clicking and dragging and putting together puzzles and playing games appropriately. Small "sentences" are emerging... like "bye wa-wa" (waving to the water as it drains in the bathtub), "bye bug", etc. His play skills and motor skills are excellent. He is a happy energetic little guy.

I still have hope that one day all of these challenges will be a thing of the past. I trust that God can do miracles. I've also learned that although He CAN, it doesn't mean he WILL. This is what God has given me, us. I love this precious child with all of my heart, but God loves him too. Whatever plan God has for Alex's life, I'm willing to accept it.

Today was Alex's last day with his Early Intervention Speech Therapist, Ms. Jane, who has been wonderful to both myself and Alex. We will miss her so much!

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.....