Teaching a Child with Apraxia (CAS) How To Read...

Overwhelmed. That is how I feel when I think about teaching JJ how to read. It is overwhelming. When I was in graduate school I did a practicum in a high school testing students for learning disabilities for their IEP's and coming up with ideas for helping student's learn despite those learning disabilities. Little did I know just how much that experience would be used personally in my life. God was preparing me... I also often consider the irony that when we adopted we were asked if we would feel comfortable dealing with special needs and I said "no." Ha. We have so many diagnoses around here I can't keep up lol!

The psychologist that I trained under while doing that practicum asked me to come up with a model of understanding how students learn. He wanted me to understand that it is not just this global process of "learning" but that there are many, many facets and processes involved in learning. If neurologically a brain is unable to process information "optimally" then learning is compromised. The brain is an incredibly magnificent and complicated organ. It can compensate for a lot, but damage also makes outcomes...messy.

Buddy asked me the other day why JJ having difficulty speaking contributes to his incredible struggle with learning how to read. My first answer was that statistically there is a very significant number of people with CAS who also have written language learning disabilities. If he "only" had articulation error problems with his speech, then reading would not be such a problem. It would be a "muscle" issue and not a "brain" issue.

I am not a neurologist so cannot pretend to understand all of what is going on. But what I do understand that is happening is overwhelming enough.

I have talked about how JJ has trouble with retrieval of information when he tries to speak. He has no problems at all with non-verbal understanding or following directions (other than stubbornness - he has loads and loads of that lol!). However, ask him to actually say the specific words and he usually uses a lot of "attribute naming" to describe words/situations rather than being able to retrieve and say the actual word. That is adaptive and over the past 2 years he is finally able to communicate with us and as a family we know what he means when he speaks and all is well.

But...when learning how to read. Uggg. It gets so complicated. Because in reading there are those pesky 26 letters. Those letters don't have "attribute naming." They simply say what they say. For someone who can't retrieve specific information that is overwhelming. I have taught him the sounds (forget trying to teach him the name of the letters - at this point who cares?). But I had to teach him the sounds in conjunction with a word (again, to help him combine another piece of information to a meaningless couple of squiggly lines so it will "mean" something). That is pretty normal and most kids do that but they realize that the /b/ in butterfly is just the "b." Not JJ. To him /b/ means "butterfly." I am working on getting him to break that idea but it is pretty stuck.

When Buddy was 2 I sat him down to potty train him and thought I would work on teaching him his letters while he sat. He proceeded to tell me what all of the letters were in 1 setting. I realized he had learned them from a Thomas the Tank Engine computer game. He learned and retained and retrieved it fast.

I didn't even attempt to teach JJ letters until he was 6, and it has taken SIX MONTHS for him to get the sounds. Even now it is a laborious process for him to have to stop and really think hard to retrieve correct sound when he is looking at the letter. I am now working on trying to get blends like "am" or "at" or "bat." For him to see the letter, retrieve the sound by pulling up the "picture" in his mind of what picture goes with that sound, THEN hold that sound while adding another sound to it that he had to go through the same laborious process to retrieve. THEN actually remember both of those sounds and put them together to make /am/ instead of /a/   /m/.  He loves to rhyme and does great with that. So if he finally gets the hang of bat, cat, sat I can get him to do mat, fat, nat - but at that point he is only rhyming and not actually "reading" if that makes sense. So if I switch it up to "mad" instead of "mat" he is completely confused.

Do you see where this is going? I can't even imagine how to transition him to learning that /a/ makes more than 1 sound...:(

He doesn't have the same problem with numbers. He can retrieve numbers just fine. I don't even understand how that makes sense. He still has to associate the number "1" with "one" item and so on. But for some reason that clicks for him while sounds do not. He can count to 100 with only a few mistakes. He is starting to do adding and basic math with ease. But reading.

Uff. Da.


Friday we have an appointment with a different speech pathologist to get another evaluation. She has a lot of experience with Childhood Apraxia of Speech (CAS). I am hopeful of what she can tell us.  At that point we will have to make a decision between several options for intervention. I am not sure what the answer is... Hopefully we will know more after Friday.


Sunday during church JJ went to the bathroom and came back very excited to tell me that "h, h, horse is the same as h, h, hot!!!" It was the first time that I know of that he has made the connection that the first letter of a word was for more than just one single word. When he then also told me, very excited, that "J,E,S,U,S spells Jesus" I teared up right away. His first spelled word. And it should be. Even if he doesn't understand yet how those letters make sounds that make up words.

God gave me hope right then. JJ will make progress. It won't look like everyone else's progress but it is progress. He is wonderfully and perfectly made:)


2 years ago JJ still wouldn't speak to anyone outside of the family.

2 years ago no one outside of the family could understand anything he said.

2 years ago I still had to carry him in public because he was terrified of people and he wanted to feel safe.

2 years ago we couldn't get him to stay with a babysitter without a family member present.

2 years ago he didn't sleep through the night and needed me to stay with him until he fell asleep and if he woke at night he could not put himself back to sleep and needed me (OK, all of that is still the case - but I have hope for that some year too lol!)

But tonight he is at AWANA!  By himself!  Well, 3 siblings are also in the building but he is alone with his leader and group without fear. He is learning verses!  Well, the leader works with him and there is A LOT of paraphrasing going on. But he is making progress every week and retaining information about Jesus even if he struggles with retrieving it in a specific way. He is actively playing games during the game time and there are no family members in that room to encourage him. He is just feeling safer around people. He has made some friends. He often has to ask us what their names are as he forgets and will say "the one, you know, that has the brother" or "the one I danced with?" He is gaining confidence.

This is yet another opportunity for me to trust  in God and His plan for JJ's future. And that He will guide us on the correct path for His glory and not for what the world says is important.

Psalm 25:1 

In you, Lord my God, I put my trust.

Psalm 56:3 

When I am afraid, I put my trust in you.

Isaiah 26:3 

You will keep in perfect peace those whose minds are steadfast, because they trust in you.

Psalm 37:5 

Commit your way to the Lord; trust in him and he will do this:

Psalm 33:21 

In him our hearts rejoice, for we trust in his holy name.

This parenting thing sure isn't for the feint of heart! It is a good thing that we have God:)

Alaskan Cruise?

My husband and I have been on two cruises (before having children;) One was a Caribbean cruise - for our Honeymoon. The second one was a Southern Caribbean cruise while I was 7 months pregnant with Beautiful. We have talked over the past 20 years about going on an Alaskan cruise. Recently I have been prodding my husband along trying to get him to take me. We have Beautiful to watch the kids and we can go a week that the Middles are at camp (we have no family in our state so have never had grandparents/etc to watch kids. We are so grateful for the friends who have kept our kids in the past when the Middles were younger so that us older ones could get away to Mexico (so.incredibly.grateful!) but they are now just too difficult to ask someone to take them for that long - hence us trying to go while the kids are at camp lol!)

He has been reluctant. He wants to wait for the kids to get older in case something happens to them or us while the kids are away. And, lets face it, our kids are a handful! He also argues that our oldest son will be gone to college soon and we should just spend the time with him until he leaves.

I keep arguing that Beautiful is probably going to have her own family soon and then she won't be able to keep track of our "handful" children as well if we left for a week, the kids can only go to camp for a couple more years, and - lets just be real - as difficult as our daughters are right now it will be nothing compared to what they are like from ages 13 - 16 (in my opinion those are some downright insane years for girls). So, I think we need to go sooner.

I think both sides of our argument have valid points. So, today he shocked me when he gave me a proposition.

I have been desperate to lose weight for years and no matter what I do I can't seem to lose it. So, he asked me what my goal weight would be - and then told me that if I reach it we can go. I countered that he has been itching to go on a fishing trip and that if he gets his A1C down to the recommended level (he was diagnosed with diabetes just over 4 years ago) that he could go on the fishing trip.

Then I told him - "It is ON!!"

Of course he will likely win way before I do. In fact, given how hard it has been for me to lose weight there is probably a fishing trip and not a cruise in our future. But I have a new motivation and maybe it will help lol!

Quite honestly, his motivation is probably that he gets to go on a fishing trip with only our 16 year old and will get to leave the rest of us home lol!

Disney World: Day 9 We finally get HOME!

I thought I had packed Grace's bedtime pills in a logical place. I thought I knew exactly where I packed them. But, I could not find them. So between putting her and Faith in a bed together (right next to our bed) knowing how much they are like oil and water (MOM! she breathes too loud! Mom! she is pulling on the blankets! Mom! Ewww, I am not sleeping with her!) and me not getting her sleeping meds in her I am not sure if she slept at.all. Which means that I did not sleep much as I can't settle until I know they are sleeping and not causing mischief.

We were back on the road by 8:30 a.m. and we got home about 8:30 p.m. We had called ahead to pick up pizza hut pizza on the way home so we didn't have to find food. I did that, and when we got there they had no idea what we were talking about. So we ordered Casey's pizza and picked it up when we got home. We were not happy with Pizza Hut:(

Last night we stopped so late because there is NOTHING after Memphis, TN. We kept looking and looking for a place to stop and had to just keep driving until we could find a town big enough for a clean hotel - we found a Holiday Inn. As much as I refuse to get a smart phone, I was VERY thankful for our son in law using his to look ahead on our route and help us find a hotel to stay in lol!

The drive this day...We stopped to get McDonalds for breakfast to eat on the road and get moving. On the second day of driving down we had instituted a rule that we would only stop for bathroom breaks every 2 hours and EVERYONE was required to relieve themselves so that we could be sure to make it another 2 hours. We used this rule on the way back as well.

However...our 12 passenger van set up is that I set in the first bench seat with JJ and the snacks, electronics, everything else that people may want and I need to have access to in order to keep them QUIET and NOT FIGHTING. So, there is not much room around me. Beautiful and her husband have the second bench seat. Two people over 6 foot tall look quite uncomfortable for long drives in a bench seat. I am just saying... And in the back 4 person bench are the Middles with a space between Grace and Superman (who protects Faith from Grace by sitting in the middle of them. Poor guy).

About an hour after McDonald's Grace (someone said she had fallen asleep, not sure if that was true) sat up and yelled she had to throw up. She gave us about 10 seconds of warning. Yeah...

Thankfully we use ice cream buckets double bagged with Walmart bags for trash cans in our van so someone closer to her got her a bucket.

I then tried to navigate the moving of Superman and Faith through all of the junk that was piled all over the place to my seat while I tried to get to the back seat. Beautiful and my husband DO NOT handle vomit well, and since Beautiful had been sick 3 days before she was not happy. We made a bathroom stop before the 2 hours was up (we have to be flexible people!) and I pulled out her dirty clothes from the day before that were in the hotel bag (nothing else was accessible) and got her clothes changed. Thankfully, we also always keep lots of baby wipes in the vehicles!

Also thankfully, I had my EO's handy so I got Tummygize and Peppermint on her tummy frequently (and mine just.in.case) and had a Purification spray that I sprayed many times over the next 11 hours of travel:) She vomited a total of 8 times in the van (and a couple more times after I got her home, showered, and to bed).

I remained in the back to help her and she either vomited to slept the rest of the drive home.

Silver lining? It was blissfully QUIET in the van as the girls were not fighting, and I got to SPREAD OUT in the back rather than being stuck in a small space. So, it all turned out ok:)

Palm Trees and warm February weather?  We will miss you!!!

***********************
Post Vacation Contemplation
Our home is a stressful home. It is not a peaceful home. There is no way for me to even describe the conflict in our house or the issues we deal with. You wouldn't want to hear about it anyway.

Every day of travel we prayed for our safety and other various things. But I kept praying for unity for our family and that we would like each other more after the trip than before the trip.

You know what? I think we do. Despite 9 days of being is close proximity to one another 24/7, I was able to relax enough and actually enjoy my kids enough that I like them more than I did before. Does that make me a terrible mother to admit that? I love them all. But constant rebellion can be a weary experience. Does that mean that we did not have any conflict on the trip? Far from it. But we got to have more moments of joy than we usually do, and more moments of togetherness without distractions. Overall it went better than I expected it would go. How to keep that momentum going now that we are home is something I am contemplating...

Of course Beautiful and her husband were more than ready to not come over again for a month (except for the Superbowl of course) lol!

Maybe I am doing better at anticipating conflict and intervening earlier. Maybe (PLEASE) they are actually maturing. Maybe God just gave us a very needed break. Whatever it was about, I am glad that we went:)

Oh, and JJ has put himself to sleep 2 out of the 4 nights that we have been home, doubling the number of times he has done that while at home. So maybe the trip got that trend started too.

Please?

Pretty Please?  ;)

Regardless of where he fell asleep, he has slept through the night 3 of the 4 nights we have been home. That means that I have gotten to have 6.5 hours of uninterrupted sleep 3 nights. I laugh when I think about how that is so much less sleep than I used to need but after over 6 years of getting so much less than that it feels like I got 12 hours of sleep those nights lol!

If you have read all 9 of my Disney World blog posts to this point - Wow! Thanks for reading:)

Disney World: Day 8 Starting the Drive Home

Of course it took us longer to get out of the house than we would have liked, but I think we were gone by 9:00 EST. We had been advised by people in Georgia that unless we wanted to sit in traffic in Atlanta during the day we should also go through it at night. On the way down it was a Saturday and traffic (and construction) was not good. So we decided to head back through AL instead since it would be mid-day on a Friday (like we did last time). We traveled 15 hours this day and got to a hotel somewhere in Arkansas around 11:30 p.m. CST. It was a LLLOOONNNNGGGGG drive. JJ even fell asleep before we got to the hotel and slept all night long!  A very rare occurrence for him to fall asleep in the van at night.

Traveling through Alabama was long. We took some back roads per the GPS, but I think that staying to the interstate would be better on our patience because of the slower driving and stops to go through towns.

It was an interesting experience to stop at gas stations or McDonald's and be the only white people there. As a transracial family we are used to getting a double look when we walk in, but it was different there. It was a good experience for us to know what it is always like for Superman, Faith, and JJ when they are the only black people in a room, building, town...

We got to see some of the damage from the tornado that went through Georgia a couple of weeks ago. We went through FL, GA, AL, MS, and AR today.

Georgia tornado damage

Georgia tornado damage

FEMA in Georgia for tornado damage

Alabama

Birmingham, AL   I am so glad we do not live in a city!

I tried to take a picture of every state. It was obviously dark out. I think this was the MS one lol!

Disney World: Day 7 Epcot Day Two

Beautiful was feeling better this day so we loaded up for our short day at the park. We were all tired and ready to be done with long days. We chose Epcot for a second day since we all liked the park and Beautiful didn't get to see it yesterday. She was still pretty week from the stomach crud so we got her a wheelchair and her husband pushed her all over for the 6 miles of walking;) He is a most excellent husband:)

We went to Mission Space and Test Track again. We got to watch the Jamminators - which are 2 men in a percussion "band" who bang on garbage cans for as their instruments. It was really fun to watch. This week was arts week so there was a lot of art work and bands playing. Three years ago it was horticulture week when we came and the bushes were all clipped to represent Disney characters. Personally I preferred that week. However, there were a bunch of bands (loosely labeled) and as the kids love music (especially JJ) it was nice for me to be able to sit frequently today while they listened and danced to various entertainment:)

The oldest 4 of our group were moving slowly and spent most of their time today in the "countries" looking in the shops. NOT a safe place for our youngest kiddos if we don't want to purchase a bunch of damaged souvenirs, so I took them on more rides. We went on the Figment ride and Under the Sea (Nemo). They are both fun. Then the kids played in the play area after the Nemo ride and watched the fish in the huge aquariums there until I was texted that it was time to go for the night. I think we left around 7.

We then headed to IHOP. If one wants to call it a tradition, we stopped there 3 years ago as we had never eaten at one before so decided to do it again on this trip. Everyone got a huge "breakfast" meal then we headed home to pack. While packing I contemplated whether it is worse to pack for the beginning of the trip or to just pack up everything in the vacation house to get it home. I am undecided...

I was so excited for the pool and the game room. I got to enjoy the pool with the kids a couple of times. I never did get to play pool though:( But I was very thankful for those two activities at the rental house so that we could give the kids something to do besides argue...

Grace in Canada

Percussion players in China

Trains

The kids swam a lot this morning while we packed up.

Finally got a family pic with our shirts:)

Figment!

Either JJ is posing like a goofball or grumpy when I want to take a picture-so I will take the goofball;)

game room

boys' room

kitchen

patio/pool

girls' room (Well, Grace's room)

Living room.

There were 3 other bedrooms - two with king beds and 1 with a queen bed. It was a nice home and plenty large for our family. Washer/dryer so I was able to keep up with laundry. Dining room table for 6 and a kitchen table for 4. It was a nice house:)

This is the link to the house if anyone is interested in staying there:)

Disney World Day Six: Epcot Center for My Birthday!

Today I got to celebrate my birthday with my family at Epcot Center:) Beautiful got sick in the middle of the night so she could not come with us. That made me sad, but she got to rest in peace and quiet and the other 8 of us enjoyed another packed day of walking, standing and waiting, and more walking;)

Every night in the house so far I have enjoyed the large soaking tub. I don my swimsuit and JJ and I enjoy a bubble bath with Copaiba EO to help my old muscles;) Last night, just like every other night, he announced he was tired, got out of the tub before me, and put himself to bed. To be totally honest Faith and Grace had a huge row the first morning we were here so we removed Faith from that room and she sleeps on the floor of JJ and Superman's floor. So when I say that JJ puts himself to bed what I really mean is that when I go check on him he is snuggled up next to her on the floor like he would normally be with me. But, hey, he is going to sleep without me so it is a win for me!!

Anyway, we got to Epcot late as we had a Fast Pass to what we remembered to be our favorite ride - Test Track. We had to go through metal detectors at this park, unlike the other ones, so I was worried that we would miss our time (they are effective for one hour from the time we signed up to be there). We made it with minutes to spare (sound familiar...happened to us yesterday too...that is just the way our family rolls;) But it didn't really matter because Epcot was not busy at all that day so the lines were all under 15 minutes of wait time:) We all loved this ride and went on it several times this day.

We went on the ride Soarin'. My husband was ADAMANT that he would NOT be riding that ride so the rest of us went. We had hoped that the line would short since we were pushing it for another fast pass to expire. But then...they came and announced that there were "technical difficulties" and there would be a delay. It wasn't more than a 15 minute delay. I was texting with my husband and he said he saw someone running with a spray bottle toward the entrance while waiting for us. I suspect (I know it is wrong to assume) that someone vomited on the ride... Anyway, we finally all got on the ride. I knew what to expect from last time but Buddy had not gone on it. You are put on racks of seats and seat belted in. Then the racks are elevated so you are all facing a concave movie screen like you are in it. There are two rows across and 3 back which means that the front row ends up very high up in the air when everyone is put in front of the screen. If you are scared of height either DON'T LOOK DOWN or  don't go on the ride. The racks of seats sway like you are riding in a hang glider (but sitting, not prone). The movie was different than last time and was really, really incredible. But it is like you are in the air and I am not embarrassed to say that my stomach was in knots, I clutched the handles beside me very tightly, and I closed my eyes and thought of something else during scenes when I knew it would be showing us tipping over the edge of something. The kids LOVED IT. Yeah... must be because I am, er, 29;)

We missed our Fast Pass but the line to Spaceship Earth was very short so we just walked in anyway. That one is the big ball that one thinks of when they think of Epcot. It is another low fear ride when you sit in a open bench and they talk about technology and the future of technology.

You can see the Spaceship Earth in the background. You can not see JJ because he is refusing to be in the picture and is off to the right... Because, of course, not all of our day ran smoothly... Because that would be an unrealistic expectation;)

There is a Living With The Land ride that is like pontoon boats that you sit in and they talk about agriculture, etc. It is a neat ride. And safe. Very safe. And on.the.ground.

We also went into Mission Space. We did not do this one last time we were here. I was a little reluctant and my husband went on it once and refused to go on it again. It is a simulator for being in a space shuttle. There are two levels you can go on, green and orange. Green is for me - low key. So my husband, JJ, and Grace went on that one. Buddy, our son-in-law, Superman, and Faith went on the other one. You sit in a "capsule" 4 across and are harnessed in. Then the control panel comes toward you and the capsule moves while you watch a screen as if you are on a space mission. There is a narrator who tells you what to do (push buttons depending on if you are the Commander, Pilot, etc). Grace and JJ loved that they got to push buttons, my husband felt claustrophobic, but it really was very low key and not scary at all if you are ok with being in a small place (they have hair blowing right on your face - I assume to help you not feel claustrophobic). The other 4 said that there was a LOT more g-force on the orange one. They all went on it twice and loved it.

After many of the rides at Disney are educational or fun things to do. This was the one after Mission Space.

The "rides" at Disney World are far more entertainment or educational "experiences" than a thrill ride. I think we all understood that better this time so we adjusted our expectations accordingly. If we just want thrill rides we will find an amusement park:)

We stood in line to get pictures with Mickey, Goofy, and Minnie. Kids loved that. We started to stand in line for other characters but I fail to see the point of standing for 30 - 60 minutes to get a picture with someone dressed up in a costume of a fictional character so we...didn't do that anymore.

The back part of Epcot is a big lagoon with a walking road around it. Around that are a bunch of buildings set up as if they are from different countries. Like Canada, United Kingdom, Mexico, Italy, Germany, etc. The buildings and the entertainment (music, juggling, etc) are themed to be like the country.  The bathrooms are even set up with similar themes lol! Believe me, we experienced each of the bathrooms at the parks numerous times and found out which ones had the shortest lines and the "companion bathroom" for our child who cannot handle public restrooms. Clean bathrooms with short lines are a beautiful sight!!  It really is a very interesting place to see. Not much to do since there is only 1 ride back there (Frozen) and the wait for that was way over an hour so we did not do it) and the rest is all stores, but the older people all thought that was great.  Of course there is a lot of alcohol sold specific to the countries as well. We did not see anyone who appeared intoxicated, but it was present. I don't remember that much alcohol last time but last time we left Epcot earlier and this time we stayed for the fireworks so I think it was just a time of day difference.

 JJ loved that there was a funnel cake booth so we got funnel cakes for my birthday cake:)

The fireworks are put on from barges in the middle of the lagoon, and there is music and lasers incorporated into the show. The largest barge is a huge globe that lights up where the continents are. The fireworks show is amazing. Amazing. We found a place to sit almost an hour before the fireworks. I was SO thankful we got to sit as my feet and legs were killing me by 6:00 every day...or earlier. Our son in law has a mileage tracker on his phone and we walked 5 - 6 miles every day. As a funny aside, he was able to look at where he had gone during the day and the squiggly lines from when we were on the roller coaster were hilarious!

The top picture is of the globe being brought in during the day with the globe reloaded with fireworks for the nights show. There are several barges. The bottom one is what the globe looks like during part of the fireworks show - we are facing North and South America lit up... The middle picture is of our family right before the fireworks show with the Epcot ball in the far background.

Anyway, after the show I carried JJ on my back to the tram and we rode to our van. Epcot is actually set up so the walk to vehicles is relatively short if you want to walk it. Unlike Magic Kingdom where you have to take a ferry or mono rail.

We got back to the house late (the fireworks were at 9) and we got everyone in bed. JJ and I enjoyed our soak, he put himself to sleep again (AWESOME!), and we were thankful that Beautiful had a good day after we left so she could come with us the next day.