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!

Ileus

It's called an ileus. That is why John is back in the hospital tonight. This morning we had no idea what was going on other than he kept throwing up and he was getting weaker by the moment. By the time dad rushed home from seeing someone in the hospital in Columbia to get us and rushed us back to the hospital John was unable to even hold his hands together to make the sign for 'more'. After a lot of testing we found out that the problem is an ileus, a part of his intestines just isn't moving right now, lots of things could cause it, we don't know for sure which it is right now. What we do know is that he is going to be hospitalized until his bowels are working correctly again, and that could be tomorrow, it could be a week or so.

When I left to come home John was winding down and getting ready to go to bed, but he was still sitting up, signing, smiling and carrying on with the nurses, so he's tons and loads better than he was this morning. We have so many things to be thankful for today, not the least of which is a kind and compassionate family who completely understood when their pastor had to leave the bedside of a dear member to rush home and be dad. We are very thankful for good doctors, a great hospital, good nurses, and a little boy who despite the pain of getting in IV's and being sick still wants to smile and talk to those around him. We are thankful for family and friends who keep our little guy in their prayers. We are most thankful for a faithful and caring God who has carried us through one more day of health crises with reminders all around us of how much we are loved and how we can show His love to others.

Perspectives

Life seems to be a continual string of events that are good or bad depending on the perspective that you see them at. Today was a St. Louis day, John had a check-up with both the GI department and nephrology, and we were once again reminded of the perspective of life that you see from the children's hospital.

John has lost weight again, but developmentally he continues to chug forward, so while it's not good, it isn't tragic either. We're adding in some extra calories to his night time formula and trying to encourage him to eat some more high calorie things. Seems kinda ironic in a household with adults who have been trying so hard to reduce calories, portions etc. The GI people are wondering if his weight is a part of his current kidney issue.

Ah the kidney issue, well John has hydronephrosis, basically his kidneys aren't able to rid themselves of all the urine that they make and some of it hangs out there. He's had it since he was born but lately it is worse and so all roads lead to surgery at the moment. Here's that perspective thing again though because John is right now the strongest that he has been in his life, he is 2 days shy of 6 months with no hospitalizations, a record for him, and he has his best chance to survive this big of a surgery right now. We will know next week exactly what surgery they are doing and when they are going to do it.

So today while we were at the hospital waiting to hear the news of what John's immediate future held, we passed a family with 2 little kids in strollers, and they stopped to talk to John because he was walking around in his gait trainer being oh so cute. A little later John and I were headed up to see the trains again and the dad from this family stopped to give John a sticker and talk to him again. A couple hours later John was in the bathroom with his dad getting his clothes changed, and the dad from this family came over to ask where he was, was he okay, and to bring him a Kit Kat. He wanted to tell me that his little boy was nearly 2 and has a syndrome that renders him unable to walk even as much as John does, and he was so happy to see another little guy out there doing so well and said that he would pray for John, and of course we will remember his little guy in our prayers too.

If the day comes that you are ever tempted to throw yourself a pity party go and visit the children's hospital for a while, you will find there a perspective on life that few other places show. While there is sickness, and sadness and those things of course, you will find a living example of faith, and people who despite the circumstances of their lives or their children's lives find a reason to smile and learn to enjoy the moments that they have with their kids. At the very beginning of John's life a very wise pastor reminded us that we were not at the hospital only to take care of our son, but to bring the hope of Christ to the people there. That is a perspective that we try to hold onto, and when it slips someone comes by to remind us!

We've been out of the hospital long enough that it's hard to think about John having to go back in, but when we remember that we will be there not only for ourselves, we find the strength to prepare and ultimately the strength to go.