silence is (not) golden in our house

(be forewarned...this is a long one...we're covering a lot of ground here)

Many of you may remember that the day after Riley was born, the nurse discovered that he had a localized seizure in his right arm. He was immediately transferred down to Children's Hospital where he remained in the hospital for the next 12 days. After putting him on anti-seizure medication and running various tests, it was determined that Riley suffered a stroke in utero due to a blood clot in the left frontal lobe of his brain. We were told that due to the "plasticity" of his newborn brain, it often learns to compensate for an injury. We were further encouraged by the fact that he had no additional seizures and was weaned off his meds within 3 months. So the prognosis was good due to the fact that the stroke happened at such an early age.

Because of the time he spent at Children's, he has been going in for a checkup with his neurologist every six months and they watch for any signs of developmental delays. At 18 months they began to suspect an expressive language delay and recommended that we have Early Intervention assist in some in-home therapy. So for the past year Riley has been getting services from EI to help him with his speech.

At first, we wondered if he was just unmotivated to talk. Riley communicated so well in gestures and sounds that he may not have seen the need use words. We had to stop anticipating what he wanted to see if he would ask for things. Also, he's a contented kid -- maybe he didn't feel the need to have his present circumstances "changed". Since boys are thought to talk "later" than girls, we weren't sure if this was something to be concerned about or not.

After six months of working with EI, we were seeing that he was more motivated and willing to communicate in either signs or speech, tho' still saying only a handful of words. We began to wonder if there was something else going on that was making speech difficult for him. At 27 mos, EI did a full evaluation and determined that developmentally he was tracking along with his peers in all areas except expressive language, which was at an 18 mos level. His receptive language is fine -- he understood us and could follow simple and multi-step commands that he was given, so there were no concerns there.

It seemed that Riley's ability to form certain sounds and consonant - vowel (C-V) combinations was limited. For example, he could say the "b" sound and the "e" sound clearly, but when he tried to say "bee", it came out as "beh". The C-V combo "me" gave him the same trouble. However, "tea" and "knee" sounded fine. He might attempt to say a simple two word or two syllable combo, but it was often not intelligible. Once, he spontaneously said "eggs please" and it came out "eh pwa". If it's more than two words or syllables, he won't even bother trying. And in a few cases, he won't say words that he used to say. "Water" used to come out sounding like "daughter", but now he won't say it at all. So there's inconsistency in what he can say and when he will say it.

Using signs did seem to help him with his speech. After saying "more, more" and using his sign (which helped me to distinguish between it and "mama"), he dropped the sign altogether and now just uses his words. He did the same thing with the only two-word combo he has used consistently or spontaneously -- "all done". Just this past week, he said "me" and "bee" clearly for the first time while our EI specialist was working with him. That was an exciting moment after seeing him struggle with those c-v sounds for the past year.

But as we have a long way to go before he catches up with his peers, we felt that it may be time to have him undergo a full speech & language evaluation by a Speech Language Pathologist. The backlog for an appt at Children's was almost 4 months, so his eval is scheduled for April 27th. I'm anxious to know if they can diagnose what the problem is. Our suspicion is that he may have verbal dyspraxia ("dys" = difficult, "praxis" = planned movement), which is a speech disorder in which one has difficulty in controlling the muscles that are needed for speaking properly. It's also known as apraxia of speech. The brain knows what it wants to say, but can't seem to organize the oral muscles needed to put the sounds together to make words.

One of our resources describes the act of speech like this:

1) First, there's an intention to communicate.
2) Next, an idea forms, outlining what the speaker wants to say.
3) 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 and syllables that must be ordered together.
4) All of this information is translated 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.
5) Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.

A child with verbal dyspraxia has difficulty programming and planning these complex speech movements. It is not uncommon for stroke victims to suffer from apraxia. Add to the fact that motor aspects of speech production originate in the left frontal lobe area of the brain (the area where Riley suffered his stroke) and you can see why we suspect dyspraxia as the source of his expressive language problems.

We're sharing this with you -- our blog community -- just to let you know about something that has been very much on our minds and hearts, but had yet to be shared on the blog in much detail. With Kendall's arrival in March and Riley's transition to preschool in July, there is a tremendous amount of change going on in our son's life in the next 3-6 months. Those of you who pray, we would ask for your prayers as we seek guidance from EI and the SLP at Children's in order to help our son communicate more effectively.

If you managed to read through the entire blog... thanks. I know it was a long one, but one I feel much better having written. It's a lot like journaling and I hope to use it to look back and see how God took care of our family as we await to see what lies ahead for us.

Shelby