Teaching an Apraxic Kid to Read

I've spent years searching and digging for information on teaching a deaf child to read, most of it is written for deaf kids that do not have hearing aids, all of it seems to say that some deaf kids learn to read, some don't, and no one really knows why. Distinctly unhelpful. Ok, to be fair the one thing that I did read that was actually helpful was that the only thing in common among deaf children that can read is parents who are determined that they will - we are some determined parents, let me tell you.

Several months back I decided that maybe I should google 'teach apraxic kids to read' being as John's main issue is that he doesn't talk and all off-the-shelf reading programs are predicated on the fact that the child can repeat the sounds made by the teacher. I cannot believe that it took me this long to actually search for this, but it did, now though I have actual helpful information, some of which we have put into action and it's actually starting to work :)

So here's the list of things that an apraxic kid needs to have worked on so that they can learn to read:
1. phoneme - grapheme matched cards (cards with pictures that represent sounds)
2. color coded systems as visual reminders of language structures and of sound groups
3. sound categorization activities using multi-sensory approaches
4. rhyming work
5. explicit teaching of reading and spelling rules

Lol, I seriously had to google some of the words in that list just to figure out what they are talking about. But some of it we have already implemented and it's really working for John, it's slow, but it's working!

So let's start at the beginning:
1. Phoneme-grapheme matched cards: K-3 Teacher Resources is great for these and I've printed, cut out and laminated a ton, better yet I am using them with John in conjunction with Ordinary Parent's Guide to Teaching Reading and he is starting to make connections. The other day he was playing around scribbling and I asked him to write an 'E' for me, he thought for a second and signed 'elephant' for me, which we have been using for the short e sound. Each day I am seeing him make more connections and now he is even trying to make the sounds with his mouth and accomplishing a few here and there.
2. Color coded systems: At the moment all the consonants are on green and all the vowels are on red, as we move I will continue to color code everything.
3. Sound categorization activities: I'm still working this one out, but have found Phonemic Awareness in Young Children which is helping me to figure this one out.
4. Rhyming Work: Ugh, okay the book from #3 has some help on this but we struggle right here.
5. Explicit spelling and reading rules: Thankfully here there are two programs that have been written for children John's age. For spelling there is All About Spelling which we will start as soon as John is through learning the sounds for all his letters. This program is written for autistic children and other children who will benefit by learning the explicit spelling rules as a means to learn to spell. John is NOT autistic, but according to the apraxia people he certainly needs the rules. For grammar we have First Language Lessons which came highly recommended by a trusted friend, and although the book says it will take one year to get through we will see but it looks like it is just the right book for teaching John the explicit grammar rules at a pace that his grammar-phobic mother can handle.

After yesterday's post about John's current condition, and while we are till waiting for news of how it's going to go and what we are going to be doing, you may be scratching your head and wondering just why in the world I am focused on school, in short the answer is John loves to learn and is excited about learning to read, the other answer is John is turning 7 this winter, he wasn't supposed to have turned 1, if I plan on him dying and skip school and he lives to be an adult what do I tell him then, I of little faith was so paralyzed by fear that I neglected to give you an education, if his years or mine, as we never know when our time here is up, is cut short of him reaching adulthood we still have had a great time learning together - I might be John's teacher, but never underestimate what you can learn from a 6+ year old silly boy with a contagious love for life!

Corn, corn and more corn...

...but mean mommy made him take 3 noodle bites and 3 piggy bites too! Actually John ate the best tonight that he's eaten since we returned from check-ups in St. Louis, we're hoping this is the harbinger of things to come despite his low energy level this evening.

We've been in search of a perfect mac and cheese recipe for a while, smooth, creamy, cheesy, and using real cheese, butter, etc., we finally found one but of course that still didn't make John happy with eating noodles. He didn't protest over these as much as he has over other noodle recipes, so maybe he'll eventually learn to like them, who knows.

Well at the hospital the last time I finally had to pull out the 'h' word. One of the therapist was pretty insistent about knowing where John was going for preschool this year and I finally told her that he would be homeschooled, while I can't say that she was thrilled or impressed, at least she didn't look shocked or offended, I'm sure we'll get that reaction from someone out there some day, lol, I just keep bracing myself for it. I was however really impressed with the reaction of the coordinator for the school. We ran into her at Wally yesterday and let her know that John would only be traveling to therapy once a week this coming fall and she was happy with it and said that she was glad to have the info so that she could get his IEP written up, of course we haven't used the 'h' word with her yet.

Just in case the thought has ever floated through your head that the government would be great at handling the health care in this country and nothing else has persuaded you that this would be an insane proposition, get a hold of this - to get John evaluated for and have 4 vision therapy sessions it would be $820 out of pocket if we go to the Medicaid provider, and $805 if we pay cash up front to the non-Medicaid provider, hmmmmmmm, makes me think. Okay, this is a different kind of therapy than what normally goes on, but he has a load of other therapists and doctors that really think that he might need help relearning what level looks like as his neck strengthens and he's able to look at the world in a new way. Now, we are thankful beyond words to the taxpayers of this state and this country for the health care that has been provided for our son, we certainly wish that we were able to afford the care that he needs without this assistance but still, if you ever think that the government should be in charge of all of health care park yourselves in the shoes of a government health care recipient for a few minutes, you'll see it from a whole new perspective. Well okay, I'll get off my soapbox, lol, for the moment :)

Well VBS is over...

...and John managed to make it to 3 days, or rather nights. That's not too bad for his first time. Dad went to the closing without us tonight because John was napping. He had big fun in the swimming pool this afternoon, and feasted on his Happy Meal on the way home and then was ready for nappage, hooray!

While the house was quiet and I should have been doing other things I decided that I'd play with the new photo-printer and print out the vacation pictures that are here on the blog and made John a little book about his vacation. He was thrilled. I put in the words and signs for "My Vacation" and about flying, having fun, and seeing his family and he was already working on the new signs and loved the pictures, especially the picture of Uncle Cute Nose blowing bubbles for him. I find it interesting that he is even more fascinated than usual with words when they have the pictures of the signs with them, I so wish that he could talk to me more because I'm sure he understands that they mean something and are important to him. One of these days he'll be talking more and I can't wait!

All John's therapists are now on board for 1x a week therapy, what do you know John behaves better and learns faster that way, sure makes us feel good about the decisions that we've made. Speech this week went very well, Miss Amy had new stuff for John to do and he was thrilled to play with her. PT with Miss Gertie went very well too, and she says that botox for his neck is immediately necessary because he's not currently using the full range of motion on his neck. Today Mr. Paul told us that he agreed with that and think that more tummy time is what is needed. Tummy time would be the big downfall that we have as parents, John hates it and well we aren't the best about making him do it. They have some strategies for us to try so we are going to give it another big effort, sigh, we'll see how it goes.

Time to Slow Down!

This past week has been one of interesting and in the end good developments.

Therapy on Monday was good, and John did so well, we're so excited to see all the progress that he makes. Wednesday, well that was another story. I took him to therapy by myself and he seemed excited and ready to go, he was good on the car trip there and even getting into the building he seemed ready to go. But well, all good things must come to an end, and this one surely did, and quickly too!

John ran right into the school and actually stopped and acknowledged a few people with a little wave, but when he got to Amy, his therapist, well he wouldn't look at her and instead of coming to her he wanted to run off into the supply closet to play. Now I'll spare you all the details, but suffice it to say that he spent his entire hour of therapy showing himself to be a very smart, very stubborn and very burnt out little boy. Instead of playing nicely at the table he tried to climb out of his chair to get in the toy box. Instead of telling us what the little girl in the pictures was doing he was only interested in the doggie. Instead of doing anything that he was supposed to do he did the opposite and then grinned and gave us the thumbs up sign. Amy was frustrated, mommy was frustrated and John well he had already taken out his frustrations on mommy and Amy and still had some more to go.

All the way home I thought and thought about what was going on with this child. I've joined an email list for LCMS Lutheran homeschool mommies and when I came home I asked them if they or their child had ever just hit the wall on therapy. Several mommies there have special needs kids and they were very helpful, very supportive and well all of them really helped us think through some stuff and make some decisions. First off it finally gave Mark and I the impetus to really sit down and discuss John's schedule and therapy and what we wanted to see and expected, and low and behold we were both thinking similar thoughts, like 'why are we driving an hour to therapy so that someone else can play with our kid when we could do this at home', we just thought we were the crazy one.

Well through much discussion, prayer and supportive input from friends we made some decisions regarding John and the various therapies and such that he has the opportunity to be in. Our determination has always been that he was a little boy first, and a special needs kid only when that interferred with little boy, and somehow we just got ourselves and our little boy lost in the therapy jungle. It's hard when people tell you things like 'I know a couple who took their child to therapy all the time and that kid is doing great' to then say "STOP" this is all too much and we have to slow down. It's hard to buck the authorities on anything, but we've finally decided that just as important as listening to our own selves when it comes to his health care it is important that we listen for therapy as well.

Mark called the Moog school and let them know that we were taking Friday off and starting vacation early. We're headed to Montana on Tuesday. He also let them know that we are only going to be bringing John in one time a week for the remainder of July and August and hasn't told them yet but when we get to setting the fall schedule he's only going one day then too. We have seen for quite some time that John makes great progress on the days that he comes back to school after several days out, and well it's just time that we take our homeschool ideals and apply them to therapy as well.

So we are off on a new adventure in our house. So far it's been fantastic. We've had time to relax, play Uno - which John loves and is getting better at, and draw and read and go for walks and all those things that our little boy loves and that he learns from too! Mark and I have started really working on learning more sign too, and hoping that as summer progresses we can get to the point that we can sign most of what we speak, that way John can pick up language expression naturally by watching us and repeating. Even tonight he was copying the way that Mark would hold his hands and fold his arms, it was funny.

Tuesday we are off to visit my family in Montana, where John will get to meet his aunt, uncle and cousins and see grandma too, get to ride a horse, pet some chickens and ride on a four wheeler and who knows what else. We'll update and post lots of pics when we get back!

New Haircuts!

John and I both got new haircuts this past week so we thought we would share. John is doing GREAT, he is getting stronger and faster every day, believe me the dogs are scared. His new trick this last week was feeding himself with one hand. John has fed himself cocoa puffs and cheerios and a variety of other things for a good long time, but he mostly has put them to his mouth with his left hand and then used his right to help get them in. Well the other day at his IEP meeting we were talking about he just didn't seem able to eat one handed, he was obviously listening and decided that we should know what he was capable of as that night at dinner he started feeding himself one handed like he had been doing it forever. He amazes me at how determined he is to prove that he is a big boy despite his tiny stature.

John's IEP, individual education plan, went great, beyond great it was perfect. This is the plan written between the parents and the school district regarding special needs kids and what they will be provided with. It can be a rather intimidating process and we have heard horror stories about school districts that are just bears to deal with. Not ours, our school district not only set out to make sure that John is getting all of the therapy that he needs but went further and wrote in his plan that his overall diagnosis that most affects his education is systemic ataxia, unsteady muscle movements. They did this to make sure that everyone who sees this kid knows that he's very smart and will push him to excel and overcome what limits his body has. We were thrilled! So often people see John and just see the cute and the disabilities and the people that did John's IEP saw the abilities and the potential and the amazing little boy that we know, and the cute too of course, but we are most thankful that they saw that our little guy is a big smart boy in his head, even if his body holds him back some.

So we've met John's new physical therapist, his new occupational therapist is even taking a continuing ed class on eye/hand coordination, an issue that John has particular problems with, he will continue to see the same speech therapist and still have pool physical therapy with Mr. Paul. He will also start going to the preschool at the MOOG school this next year, he will get to spend an hour each day we are there in the classroom during their music and social time. That will be cool as John only gets to see other kids when we visit family, occasionally go to the country church or passing by us in hospital or mall.

Before I go I have to tell you another of John's latest coolest new skills. Mr. Paul has been trying to teach John 'daka' for a while, hold your hand up in a classic Fonzi pose and say 'daka' and you got it. Well John not only can hold his hand that way now, but has even said 'daka' a few times. I knew the kid would speak Chinese first, I just knew it.