D1 was our first foster child. We received him at birth, but weren’t able to bring him home from the NICU until he was 8 days old. He was exposed to Depakote (valproic acid) throughout his mother’s pregnancy. He went through terrible withdrawals in the hours after birth, with very high muscle tone, blotchy skin, tremors, projectile vomiting, and uncontrollable crying. He was on phenobarbitol for three months, to stabilize him and prevent seizures from the withdrawals. He was on a stable dose for two months, and we took a full month to wean off of it. Once he was home with us and stable, we had to follow up with OT/PT orders from the hospital. He had extremely low muscle tone in his arms and trunk. We did PT three times a week for 9 months, until he could bear weight on his arms. He was actually standing, cruising furniture, a full week prior to learning how to CRAWL.
As an infant, we dealt with a lot of sensory issues. He couldn’t handle having his face touched AT ALL. He couldn’t handle the stimulation of even a soft baby washcloth during his bath. I had to use just my hands and soap, and even then he squirmed like crazy. It took us about 7 months to work up to his tolerating me to use a washcloth. Now, at 8 (Feb. 2009) his sensory issues are movement seeking, deep pressure and touch related, and skin sensitivity is not like it was when he was little. Now, he can have peanut butter smeared from ear to ear and cannot feel it.
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A baby with apraxia may not be able to create that tongue-jaw-voicebox-swallow muscle routine that allows them to babble. D1 didn’t. He could laugh, cry, squeal and scream. He could not create sounds using his mouth or lips. Nothing. At one year, we began to teach him sign language. It was so obvious that he understood everything, but could communicate nothing verbally. I got a book called Signing Exact English, and I taught him some signs. He learned and faithfully used the signs for: eat, drink, milk, water, please, thank you, more, all done, book, apple, orange, juice, tired, up, and I love you. It wasn’t much, but it was enough.
Those First Sounds & Therapy
When he was 2, and still unable to even say Momma, I took him to the doctor. The doctor referred us to an ENT specialist for a hearing test, which went just fine. His hearing was normal. The next referral was for a speech evaluation. That went as we figured: he needed speech therapy desperately. We began speech for one hour, once a week. It took two months before he could begin to make those sweet baby babble sounds. Babababa, mamama, dadadada, papapapa…. those were his first sounds (and his first two words ended up being dada and mama, as they came to him developmentally). He made leaps and bounds of improvement after the first sounds finally came. His therapist had him working at sucking applesauce and pudding through straws, and licking peanut butter off of popsicle sticks and spoons, to build up his muscle strength in his lips and tongue. He blew whistles and bubbles. I know eating pudding doesn’t SOUND theraputic, but when you’ve got a kiddo who can’t get his tongue to touch the outside corners of his mouth, giving him something chocolatey to lick off of there makes it much more motivating! It was a really long road before words started to come.
The first stage after the babbling came (and praise God that it did! Music to my ears!!), he began to learn words. Lots and lots of words! This didn’t mean he was intelligible, though. D1 could not create consonant sounds at the beginning or ends of words! All of his words were really only fragments. “Mom, come here and see what I made!” sounded like “o u ea a ee u I a!” Gradually over a year, he began to get the middle consonants, and some ending sounds. He dropped off the first sound from his words until he was five years old. “Om, um ere an ee ut I ade!” It was an improvement, anyway. And this was JUST the speech area of the apraxia. We didn’t realize it until we began to explore further, that his motor skills and toilet training were also heavily affected by apraxia.
He hadn’t had a full developmental evaluation since 6 mos., so when he was 3 I had another one done. This eval. showed some lack of coordination, and some sensory seeking/movement seeking behaviors. (This was also when the official Apraxia diagnosis was made. He was once again approved for OT. He was placed into a speech/OT group for an hour once a week. It was D1 and five other little boys, with an OT and and SLP. They ran it like a mini-preschool, where they used a calendar and checked the weather, hopscotched and climbed, crashed, and rolled clay, etc. All things that helped to strengthen his fingers and his muscle coordination. He was in that group for a year, up until he started develpmental preschool through our school district.
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OFFICIAL DIAGNOSES:
Fetal Valproate Exposure
Developmental Delay
Childhood Apraxia of Speech (articulation issues resolved, processing still being worked on)
Developmental Dyspraxia
