Apraxia
Greetings to everyone.
Over the last several weeks we have been working diligently with Xavier to get him speaking better. Miss Robin noted Xavier is six to eight months behind in his speech skills.
He and she have been meeting once a week. Xavier is determined to speak, so he engages diligently with Miss Robin the whole hour. At home, we have flash cards and we work with him in many other ways on a daily basis.
Before today, one of the things we noticed with Xavier is his struggle to get simple words to form. The most notable one so far is the word sit. This word seems to be one which typifies his struggle with words in general. He must concentrate to say the word, as if squeezing it out of his brain. He starts out with a hard and protracted "Sssssss" then works to force out the "it" almost as a short second syllable ending in a very hard T.
Xavier has a vocabulary, but he often slurs his words when he uses them (this is not the same class of slurring and cutsie pronunciation most might expect from a two year old). He will speak some words clearly and with great ease, then go for weeks before saying the word again with such clarity and control. He can babble and speak structured sentences in Xavierese all day long, but English for him is a big challenge.
Apraxia, or in this case, CAS, is a poorly understood neurological condition, fairly rare in children, and seen in many adults who suffer brain injury. In its most general definition, it is a condition making it difficult or impossible to make various motor movements, though the muscles are fully capable.
Today, that is the name Miss Robin gave to Xavier's speech difficulties. "Don't Google apraxia," Robin warned Rebecca. "What you find will scare you." She was right, apraxia can be scary. However, Robin confirmed that Xaiver has a mild case of it. With therapy, he will be able to overcome it.
The biggest potential problem will be his parents, but we are doing everything right, we are told. The problem from the parents would be forcing Xavier into making and sounding his words perfectly—to obsess over him getting every attempt correct. That will frustrate him and he will shut down trying, the very thing that will derail his healing. Our work will be to keep him engaged and excited about speaking as we work with him.
Though this news disturbed us a little, we know Xavier will come through it victoriously. We will keep him in therapy and diligently work with him at home. We have even researched preschools which offer appropriate therapies. As it turns out, the highly coveted school just down the street has such a program. Because we live in the district, we don't have to be on a waiting list. Glory to God!
Though we are doing much with therapy and exercises to help Xavier train his brain, we do not leave such things to chance and Human effort alone. We are praying over Xavier, asking Father to heal our son. We know that great is our God, Who has not brought Xavier this far just to let him stand outside the promised land. Like all Xavier's obstacles in his past, this wall will fall also!
To Wean or Not to Wean
Greetings to everyone.
Xavier was up early this morning and Rebecca decided to take him to breakfast as part of her errand running today. Sitting like a big boy in his booster chair, Xavier posed for a photo for one of his most adoring fans (his mother). After that, he ate his bacon and toast.
He has started eating more and more solid foods these past couple of weeks, and growing more proficient with flatware. The primary reason for his increase in solid foods is Rebecca. She decided a couple of weeks ago that it was time for Xavier to be weaned from the bottle. "He's two years old!" she said. "It's time."
We have been so focused on keeping him eating, we lost focus on transitioning his eating. Also, the two times in the past we've attempted a weaning did not go well for anyone. This time, however, Mom's countenance took on a steely strength; it was "go time" and it showed. We knew Xavier would throw fits and not want to help with his weaning, so we prepared ourselves for a battle of wills.
Of course, that battle of wills was not just ours against Xavier's. It was also ours against ourselves. Could we endure his shrieking and his tantrums? Could we endure watching him go hungry if he chose to not eat his meals?
It did not start off easy; everything we expected Xavier to throw at us (including food from his plates), he did. It was anger at times, frustration also. He mixed in attempts at manipulation, tantrums and the most adorable—and nearly effective—lost puppy dog look.
We started by cutting his bottle slowly, only giving it to him after he got up, or before he went down. We offered the bottle after he put some effort into eating solids. (Xavier has been eating solids for some time, but the bottle is still his go-to source)
It took a week, but Xavier got the idea. If he did not like the hunger pangs, he had to eat his breakfast, his second breakfast, his snack, his lunch, his dinner, etc. Throughout these past few weeks, I frequently mused over a mother camel and her little one I came across in Jordan. The owners were weaning the baby from its mother, and the baby camel did not like it. It called out to his mother with lamenting cries, but could not get to her. The separation of the young camel from its mother was a necessary thing for it to grow, and so a similar reasoning for Xavier.
The pain to our ears, the painful pull on our hearts, the cries of Xavier pleading with Mom for his bottle, then pleading with Dad when Mom did not acquiesce has paid off. Xavier is eating more solid food now. We've moved him to whole milk (though we are still spiking it with formula at night, mostly to augment any nutrients he misses during the transition). He is drinking from cups and glasses, often with straws. And, he is sitting at the table longer, sometimes eating well, other times playing with his food, but we think it progress either way.
We figure he is now at the 60/40 point, perhaps 70/30 now of solid supplied nutrients to formula/milk supplied nutrients. We've got a way to go, but the screaming and willful denial has greatly lessened. I credit Rebecca for her tenacity; she is the one who must endure Xavier's low blood sugar personality most of the time.
First Day of School, Year 2
Greetings to every one.
Today was Xavier's first day back to school. This year, he is a Turtle. It is a little different this year than last, in part, I think, due to different teachers. Also, this year, Xavier goes twice a week, for four hours each day.
Last Thursday, Rebecca took Xavier in to meet his new teachers: Miss Karen and Miss Andrea. Later that evening, I went to the "kids-free" orientation. It's a different room this year, a different animal (turtle), and different lessons.
Xavier will have a gym class on Tuesdays this year. The new gym instructor is a lot of fun and should give the kiddos a run for their (parents') money. On Thursdays, Xavier has a music class which we are equally excited for him to experience as he is both highly active and loves music.
It took Xavier a few minutes to get used to the idea of being dropped off, but he was soon exploring the room. (this room has a child-sized bathroom attached as many of his class mates are working on or have been potty-trained).
Emphasis this year includes manners, listening, following directions, taking turns and sharing, communication. Also, continuing with letters, introducing numbers and colors, working on fine and gross motor skills.
One of the hard things Xavier will have to rise to as he is evaluated "speaks clearly and is easily understood 50% or more of the time." He is several months behind in his speech. We have learned that this is a severe impediment in getting him into a preschool/kindergarten class; it may delay him a year. (we are still seeing Miss Robin, Xavier's speech therapist; Xavier is doing well, and works hard the whole hour with Miss Robin. He really wants to speak. We have been pushing him at home also with flash cards and making him use words to express his wants)
Most of the other evaluation points Xavier has in the bag. The list is much longer this year, but Xavier is already ahead of much of it.
Rebecca and I picked Xavier up. After checking him out of his room, we posed for first day of school pictures outside the school.