Tuesday, May 22, 2018

SATB2 Pediatrician Visit

Not sure why it is that I have a huge team of specialists for Chelsea, but still have to see a regular pediatrician for her well-child checkup each year, but I do. Around her birthday each year, I take her in for any immunizations and to get measured. 

I like our pediatrician! I feel like she really listens to my concerns, she researches Chelsea's conditions (a rare quality that I love!), and she is willing to fill out any and all forms I bring in. 


When going to the doctor's office, I usually pack a bag of activities and books to bring to entertain the kids. Sometimes the doctor gets us right in, and other times it can be a long wait. 


Some of our favorite books to bring are books related to doctors! Berenstain Bears Go To The Doctor, Germs Make Me Sick, all sorts of good ones!


I also bring Chelsea's Master Binder and our family medical binder. It cracks me up that I can fit all of the rest of our family's medical files into a single, half-inch binder, and for Chelsea's files, I have a cumulative 22 inches worth of binders, all packed full of papers!




When we first got to the doctor's office, Chelsea was just as happy as could be. We signed in, looked at books, played a couple games, and got taken back to be measured. That is when the difficulty started!


Weighing Chelsea was no problem. She stepped onto the scale, no issues. Then came the height. She refused to stand still, so the nurse couldn't get an accurate height. They had to lay her down on the table.



They were also unable to get a reading for her blood oxygen level and blood pressure. She completely freaked out about the arm cuff- no results, and we attempted the finger oxygen reader, but by then she was hyperventilating and thrashing around. So they said it was okay; they don't really need it. Which then made me think- so why am I here???  


Normally, Chelsea does well when her brother is there and goes first, which is why I usually schedule their well-child checkups at the same time. She watches him go through everything, then is calm when it is her turn. But with Chelsea, it is a constant guessing game as to what she will do next! Plus, it was getting close to the end of the day, and they were both grumpy.


The doctor was a whiz at listening to Chelsea's lungs and sneaking peeks into her ears in the middle of a meltdown. 


Overall, it wasn't fun. I don't love taking Chelsea to the pediatrician, and being 9 months pregnant, it was even more difficult than normal. But we survived! So to anyone taking their special needs kiddo to the doctor, may the force be with you!!!





Wednesday, May 16, 2018

SATB2 Eye Doctor Visit

Every year, I take Chelsea in for her annual eye exam. Since moving, I have gone through several eye doctors, trying to find one that I liked and that works well with Chelsea. 


If you think taking a non-verbal child to the doctor is difficult, you are right! It is even more difficult when it is a doctor visit that relies heavily on following instructions and giving answers to questions!


After the pediatrician's fiasco visit last week, I changed my approach for the eye doctor. I had my son go to a 4 hour gymnastics activity so it would just be me and Chelsea at the doctor. She was THRILLED to have girl's time, and was really, really happy. 


When we got there, she started out very compliant. We played lots of games in the waiting room and talked about what would happen with the doctor and about princesses (as always). The receptionists love Chelsea and complimented her outfit and hair, so she was beaming by the time it was our turn. 


We first attempted the typical eye exams with the technician. All the "rest your chin on this and lean forward until you see the green light" or "use your right eye to focus on the barn" type of machines that make you feel like something is going to stab your eyeball. Needless to say, those were all dismal failures. Which I had anticipated. 


After being unable to complete a single test, the technician took us to a room where she tried to do another test by having Chelsea follow a rubber duck with her eyes. The technician did her best, but just wasn't good at holding Chelsea's attention. So she did that test halfway, then lost interest, and we waited for the doctor. 


When the doctor came in, she didn't dive right into trying to test Chelsea. Instead, she asked about the kind of diagnoses Chelsea has, what that meant, went through some family history things, and just listened. I LOVE that in a doctor! 


Then it was time for the "One- Two" test, where the eye doctor puts the big black "goggles" in front of your face and switches the clarity and has you say if the first or second image is clearer. 


The doctor realized that this would be impossible with Chelsea, so instead asked what Chelsea's favorite TV show was. I said Max and Ruby, and she pulled up an episode on her computer. 


HOW DO YOU TEST THE EYES OF A NON-VERBAL CHILD?

I had wondered this often! The doctor turned off the lights while Chelsea focused on the video, and then shined a light through different lenses into Chelsea's eyes. The doctor said that the way the light reflects in her eye tells her how clear it is. I'm guessing that was WAY dumbed down for me, because I have no idea how they could tell that! But I trust the doctor, so full steam ahead!


Chelsea was wearing her glasses for the "test", and the doctor said that as long as she knows the prescription of the glasses, it is better to have the kid leave the glasses on, or they get frustrated that the video image is blurry. 


Chelsea favors her right eye BIG time, so kept getting annoyed when the doctor would partially cover it. The "test" probably took 15-20 minutes, and the doctor was more thorough than any other eye doctor I had taken Chelsea to. She says she would rather get a very accurate prescription in the glasses than do eye patching to correct Chelsea's occasional lazy eye.

Her reasoning was that if a kid's vision is clear, the brain will naturally accept that eye. But if the prescription is off, that eye's picture will be a little blurry, and the brain will reject it, causing that eye to be "less needed" and go a little lazy. 


So we picked out some frames, and Chelsea got a baggie of cookies from the receptionist for being so sweet, and her new glasses should arrive in a week or two! We will do a follow-up in about 2 months to see how well the glasses are working, and see if the frequency of the lazy eye has changed to know if we need to do a little eye patching in addition to having new glasses.

If patching IS needed, the doctor says she doesn't recommend a LOT of patching; that a little goes a long way if you do 20-30 minutes of a long-range vision activity (like watching TV) and an active short-range vision activity, something that uses motor skills (like doing a puzzle, or coloring). 

So we will see!!! Wish us luck!



Saturday, May 5, 2018

2017 SATB2 Conference Experience

In August of 2017, we held our first ever international SATB2 Associated Syndrome conference in Little Rock, Arkansas, USA. Here is a quick recap of what it was like for us!



Just Chelsea and I flew out for the conference. My husband and son stayed home, so we made it a Mommy/ daughter trip this time. I am really glad that we didn't bring my son- he is very attention seeking. 

1. The Hotel
We had a group deal and most of us stayed at the Homewood Suites hotel. Chelsea and I shared a room with another SATB2 mom and daughter.


The rooms were pretty nice, with a little kitchen, living room area, 2 big beds, and one tiny bathroom that I wished was bigger. Helping a SAS kid go potty when you feel cramped in a tiny bathroom is no fun.


There was a breakfast each morning. It was filling, but I wasn't dazzled by the quality of the food. Chelsea loved it though! And they had a pool that ALL the SAS kids wanted to be at every night, so after dinner, most families would congregate at the pool and talk and swim. 


2. The Welcome Night
When everyone first got to the hospital, we had goody bags and shirts for the families, and a dinner.

There was a quick welcome speech by Dr. Z and a couple of the moms who headed up the whole conference planning.

We all talked and shared stories, and it was amazing to see how similar the kids were! Chelsea had several little friends that were about her same age, and they followed each other everywhere!




3. The Clinic
I did a pretty detailed blog of the clinic HERE, but to sum up- several kids did a clinic to see the SATB2 specialists- ENT, speech therapist, dental team, genetics, and for the researchers to get some data on the kids. 


4. The Conference Lectures
In the mornings, there were some parents that gave several presentations that were amazing! It was so nice to hear people talk about topics when you know that they have been through the same exact things as you! There was a presentation that I particularly liked on keeping strong relationships in your family with a SATB2 kid. 


In the afternoons, there were more professional presentations about things like SAS research, AAC options, and work groups. Dr. Z gave an awesome presentation all about SATB2 Associated Syndrome.


5. Afternoon Child Care
During the afternoon presentations, the kids had the option of being watched by some hospital staff while the parents attended the lectures. It was super nice to have a safe, fun place to leave Chelsea while I listened to speakers.


Chelsea loved it because she got to watch Finding Nemo, and there were a bunch of toys to play with. The helpers watching the kids showered them with attention, so Chelsea was very pleased.

6. The Raffle
There were several companies that donated items to the conference to be raffled off. There were things including weighted vests, special needs strollers, G tube formula, a fine motor tools basket, and some gift cards. 


People bought tickets and placed them in containers in front of the desired item, and we drew for winners at the end of the closing dinner. The thing I learned was that I had so many tickets, I needed to write my name on the back of each ticket I put into a drawing, because there was NO WAY I would ever be able to keep track of all those numbers!


7. Camp Laughter
This was far and away Chelsea's favorite part! Most of the families were gone, but a few of us stayed for the hospital's "Camp Laughter" which was a day program with a petting zoo, crafts, fishing, talent show, and lots of fun activities. 






Tuesday, April 10, 2018

Apraxia Conferences

Before I had Chelsea's SATB2 Associated Syndrome diagnosis, she had several other diagnoses. One of the big ones was Childhood Apraxia of Speech (CAS). Since I was completely new to the special needs playing field, I decided to go to the national CASANA conference. 



CASANA is the national Apraxia organization. They have recently changed their name to Apraxia Kids. 

Attending the two conferences I did was incredible, and taught me so much! Here is how the conferences ran:


First Day
The first day started in the afternoon, giving the attendees time to arrive and get settled. It began with a meet and greet, and I got to know several other parents and lecturers. After the meet and greet, we picked up our schedules for the next couple days, and went to the keynote. 

The keynote in Tennessee was my favorite. It was about promoting resilience in children with special needs. The keynote in Texas was geared toward researchers, and most of it was over my head. 


After the keynote, there were drinks and appetizers in the hotel lobby, so everyone hung out and talked about Apraxia and introduced our kids. One thing I really liked was that on our lanyards, there was our name and a picture of our child with CAS. 

Second Day
Quick breakfast in the hotel lobby, then off to classes! You register for which classes you wanted to attend ahead of time, and I picked ones about working with your child at home, making therapy fun, advocating for your child, and a plethora of others. 


My favorite classes were the ones on making therapy fun and engaging, and then anything taught by Dave Hammer or Nancy Kaufman. They are both incredible speakers, and I took so many notes that my hand was cramped for days! 

Lunch was provided between classes, and another thing I really liked about the conference was that they had "topic tables", so once you got your food, then you would go find a table that interested you. So one table was for IEPs, another for "Dads of CAS kids", another for potty training, or homeschooling, or teens with CAS. It was so relieving to find like-minded parents that had the same concerns. 


There were also tables with vendors all around, and I found some amazing resources! I talked with the PROMPT Institute and was able to organize a training in my state, got videos on how to work with kids with CAS, books, and lots of great things!

One table that was really interesting was "The SLP is in". You needed to sign up for a time in advance, but it was free, and there was an apraxia boot camp trained SLP there, and the parent could ask anything and everything in their allotted 15 minutes. 


That evening, dinner was on your own, then they did some kind of activity- a rodeo in Texas, karaoke in Tennessee, just something to have fun. 


Third Day
The final day followed the same format at the second, with classes all day. Some classes were geared towards parents, others toward researchers or SLPs. When registering, all the classes were color coded, to let people know if it was a beginning/ advanced parent class, or a beginning/ advanced professionals class.


There are scholarships available, and I was awarded one for my first conference. The application was pretty easy, and they prefer to give scholarships to new parents or those parents who put in a lot of volunteer time to the Apraxia Kids organization- heading up walks to fundraise for research, etc. 

They held a raffle for a "Lunch with Lecturers", where you could buy raffle tickets to have one of the presenters all to yourself for the lunch hour, and ask anything you wanted. I didn't get drawn, but the parents who did said it was amazing!


After all the classes were over, we filled out surveys about our experiences with the conference- what we did/ didn't like, where we want a conference held in the future, topics we want addressed, etc.

The final thing we did before leaving back home was go to a panel about teenagers who have overcome CAS. Don't go unless you have water proof mascara on! I am not a crier, but I bawled when the kids up there, whose parents were told it was unlikely that they would ever communicate, spoke about their experiences learning how to talk. 



Friday, April 6, 2018

Teaching Reading to an Accelerated Child

After having Chelsea, I just assumed that in order to teach kids anything, you have to invest every fiber of your being, and then some. Then along came my second baby, and he wasn't at ALL like Chelsea. It was soon apparent that he was a highly accelerated learner. 



When he was about 2 and a half, he came up to me one day and said, "Mommy, I am sad because I don't know how to read by myself. Will you teach me?" 

I thought he would give up the notion in a week or two, so decided to humor him and teach him any words he wanted to learn to read. At this point, he already knew all his letters and associated sounds from observing me working with Chelsea.

People always ask how long I spent teaching him each day. In addition to the typical 30 minutes of reading aloud I did with the kids, I would invest about 10-20 dedicated minutes of doing activities with him to teach him to read.
Letter matching game


So I started by showing him the names of our family, and any other favorite words he had. He LOVED villains at the time, so instead of learning the generic sight words, we learned things like "Gaston" and "Captain Hook". 


If he wanted to learn about alligators, we would get books from the library, trace words, make a craft and have him sign his name, all sorts of fun. Sometimes, it seems like people believe that learning to read is a chore. It is fun and exciting!!!


Since he already knew the sounds that all the letters make, I picked up some phonic reading books at a yard sale, and had him read those. The only problem we ran into with those was that they were so short and easy, he would memorize the book within one repetition! 


To combat the memorization, I would cover up the picture and flip randomly to pages so the story was out of order, and point to words to have him sound it out. We used the EyeQ Phonics to teach him how to sound out words, and learned all the "regular" sight words just by reading and pointing them out. 


I also made sure that books were very, very accessible. Yes, some books ended up mostly taped together, and a few ended up in the trash, but tossing $10 worth of used books in order for my child to learn that books are important was very worth it to me. 


And on that note, we would give books for every holiday/ birthday. When out and about, instead of stopping for ice cream, we would stop at the thrift shop and pick up a new book for a prize. All those just to show the kids that reading is valuable. 

We did reading games every day. His favorite was the flyswatter game. I would have cards placed all around our house, or taped onto the play structures at the park, and would give him a flyswatter/ sword. I would then call out a word, and he would race to swat the correct one. 


I really liked this game, because he was motivated to read and always had a LOT of energy, so this combined the two, and a multi-sensory approach is the best way to learn!

We also had the Super Why board game, and he mostly watched Super Why or Signing Time for his screen time each day, which both promote early reading. Any time we would watch a regular movie, I always turned on the subtitles. 


We would do rhyming games, puzzles with words on them, sing nursery rhymes, and read poetry, all which help reading skills. We would also make "word family" strips, so write "at" on a card, then have a paper to pull through and read cat, mat, vat, rat, pat, bat, etc.


We would make books about anything the kids wanted to learn about. We would draw pictures or stick down stickers, then they would trace the words I wrote down, and we would point out each word and say what it meant. 


We also would incorporate reading into any activity/ outing we did. When going to the zoo, we would bring along a scavenger hunt with all the words written next to the pictures.


Chelsea had independent work activities that I would also let Ryan use, and he loved to be timed to see how fast he could do everything right. 


Once he was able to read independently, I made sure to never stop reading to him, but when I read to him, I would ask more comprehension questions about the book. No point in learning to read if you don't understand it!


Maybe I am too tough on Ryan. After having Chelsea and drilling her with therapy every day, I expected Ryan to be able to work on something that was hard for him and not give up.


The funny thing about that is- when I tell people that I do therapy constantly with Chelsea, I get lots of "Wow, that is amazing! Good for you!!! She will really appreciate it later in life!" 

But when I say that I make Ryan work on something difficult for him at least half an hour to an hour a day (a fraction of the time I have Chelsea do!) I get comments like, "Aw, just let him just be a kid!" or "Preschoolers don't need to know how to sit and work yet. They learn all they need to through play."

My thoughts- HELLO!!! Reading and learning IS fun!!!! If reading and learning aren't fun, you must not be doing it right!!