First a definition. I didn't even know what apraxia was until I looked it up, so let me share with you the information I found (information taken from the website http://www.apraxia-kids.org/):
Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.Our journey starts even before Jedidiah was born. Most of the pregnancy I had this sense that something was not 'right'. I couldn't put my finger on it. All my measurements (until the very end) were normal. The baby's heart rate was normal. The baby was growing normally. I could tell that he was going to be on the small side. It did concern me that although he did move, his movements were small and light, way past those early weeks when you first feel your baby moving inutero. But again, nothing measurable was wrong, just those yucky mommy feelings. Come the last few weeks of the pregnancy my uterus stopped growing. I always measure 1 to 2 cm behind. But by the following appointment I was some 8 cm behind...my uterus was actually shrinking. I was able to get an ultrasound done a few days later. It showed a small baby, one that was losing weight. I was told the baby needed to be born....that day! It was 11 days before my due date. We induced labor with herbs, and the following day Jedidiah was born at 5.5 pounds. He never nursed correctly from the get go. I tried in vain for a full six weeks to get him to latch on properly. I figured he was just going to be a different nurser. A few months later I realized that he wasn't outgrowing his baby clothing like he should have. A very long story short we spent two weeks in the hospital with test after test being done to figure out why he wasn't growing. He came home with a nasal feeding tube. The doctors assumed that his tummy just needed to be stretched out a bit and then he would be fine. But six months later we were back to get him a g-tube.
The act of speech begins with an intention to communicate. Next, an idea forms, outlining what the speaker wants to say. The words for the desired message are put in the correct order, using the correct grammar. Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together. All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate.
The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.
In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.
By this time Jedidiah was just over a year old. He would gag on baby food. He would throw up if you tried to put your finger into his mouth (looking for baby teeth popping in). I noticed he was on the quiet side. We figured a lot of that may have been his failure to thrive. It took quite a while for Jed to become an active toddler. Jedidiah had physical therapy and occupational therapy to help him with his delays. We were successful in teaching him *how* to eat, but couldn't get him to actually eat on a regular basis. After those basics were done we turned to his lack of speech. By this time he was a few months past two years old and hadn't said any words. So we added speech therapy to his therapy mix. A diagnosis of apraxia can not be given until the child is around three years old. In the beginning it was assumed that he had a speech delay. He received speech therapy one time a week for six months and made absolutely no progress. He was only a few weeks away from aging out of the program he was in. Then in a group meeting I brought up his lack of progress. His speech therapist (SLP) told me she was going to bring that up as well. She said the word 'apraxia' to the program coordinator. I of course had no clue what she had just said. But the coordinator did, and she did one of those, "Oh my goodness, why didn't we see this before...now everything makes sense...Jed's lack of progress, his feeding issues, the oral sensory issues (those were not his only ones)". The coordinator told me to NOT look up 'apraxia', that it would just freak me out. Hmmmm....that can't be good I thought. The following two weeks he was given a couple of tests, and he definitely tested in the severe range of apraxia. We had a consultation with an augmentative communications specialist. She brought a few devices for Jedidiah to try. We were excited to see that he would try to mimic the words from the device. However the device didn't exactly fit in well with our lifestyle. It was a very limited machine, and we found it frustrating to use. By the time we were figuring this all out Jedidiah had aged out of the program. He was supposed to start right into the 3-5 year old program, but for a lack of time to write it all out, that didn't happen. It was a few months later that he got signed up for the next program.
And this is where we are now. Jed has been in speech therapy two times a week for the past 4 months. We just increased his therapy to three times a week this month (March 2010). He has gone from saying not one single word...to actually saying two sentences that I understood! He has a very long ways to go, but we are very excited with the progress he has made. We attribute his progress to the therapy he is receiving and the alternative health care he is involved in. You can read more about those alternative therapies on my other pages listed at the top of my blog. In short he started with homeopathy at 18 months old, and then we added in kinesiology when he was about 2 and a half. We have seen great progress with these therapies. He has become more social, has finally started to eat on his own during the day (as of Feb 2010), has had a huge decrease in his sensitivities, and has had some great gains in speech. Apraxia is an issue that originates in the brain, and a lot of his therapies focus on that. When Jed was first tested with the kinesiologist she said that every one of his neurotransmitters was off. Well I am sure that accounts for a lot of what we have seen with Jed's issues!
From reading other peoples' accounts of finding out that their child has apraxia one thing that I did not experience...at first...was the devastation and fear. For us, we were so involved in Jed's more serious issue of failure to thrive that his apraxia was just something we kind of tacked on to "What's Wrong with Jed". For me it was kind of a relief to know that I was not crazy to think that there was something just not right with Jed. A lot of well meaning people tried to down play how I felt. It was frustrating that I spent months telling people about Jed's long list of "weirdness" and getting that *look*. Kind of like I was a first time mom who just didn't know that I was being over worrisome. However these people knew I was not a first time mom. They really just blew my concerns off. When we finally had the diagnosis of apraxia, all of a sudden their eyes lit up as if I had just told them something for the first time. The way I felt was that I was finally able to give this long list a 'weirdness' a name! It didn't change what had been going on all along. After a few months had passed and Jedidiah started to be more stable in his overall health I then had time to really think about the apraxia. It was then that the other emotions that most people experience when they first find out about the apraxia came.
I was very grateful that we had already been using sign language with Jedidiah long before we knew abput his speech issues. I use simple signs when my children are babies to help those months between when they know in their heads what they want to communicate and when they can finally articulate those wants/needs. I am glad that it was learned in a relaxed manner. We have increased our efforts to teach him sign as the older he gets the more he wants to tell us. It has been hard to see him struggle to get his point across. It has led to both of us in tears more than I care to remember. There was a time when he really just gave up for about three months. That was heartbreaking. Although he is past that it is hard to know that mentally and emotionally he has the ability to act as three and a half year old, but he can not express those thoughts or emotions with us a lot of the time. I feel we are ever so slightly closing the gap between his biological age and his estimated ablities age. It is just one step at a time. I seriously did not consider all the possible ramifications of what apraxia would mean. But as I see other kids his age come up to him and want to ask him his name, and does he want to play with them....and all Jed can do is stand there wanting to really reply, but all that comes out of his mouth are sounds...not words. And to see that Jed actually seems to understand that he is different and that he will more than likely go off in a corner to play instead of facing other children is hard on this mommy's heart. But he is a trooper and with some coaxing and explaining to other children why Jedidiah can not talk like they can has been helping. Again, it seems like we always take these wee baby steps. I feel like I am in an endless game of "Mother May I", but all we ever get to do is take baby steps....oh how I would love to be able to take one of the 'giant steps'.
This has gotten much longer than I anticipated. As I was writing I would remember another part of Jed's story, and I just kept adding more and more. There is a lot more I could have said, but hopefully you will at least get a feel for what apraxia is and what it has meant to our family.