Wednesday, May 30, 2018

What is Most Important?

I recently attended a workshop that was titled "What Does My Child Need to Learn?" The whole basis of the workshop was about teaching kids the things that matter most in the long run. 

This was something I really struggled with, especially in the preschool/ kindergarten years with Chelsea. I still had the subconscious thought that she would naturally pick up life skills, so I should focus my energy on academic work. 

But as Chelsea is getting older, I can see that while reading and math are important, and we will continue working on those, there are more important things that she needs to know in order to have a happy life. 

I need to look at her future in 10, 20, or 40 years, and think about what I want her to be able to do then. Do I want her to have a job? What skills does that require? 

How about living arrangements? What does she need to be able to do in order to take care of herself?

Think about social skills. We all want our kids to have friends. And that means she will need some hygiene and social skills.

So considering all of that- what do I need to teach her NOW and practice for years so that she will be in a good position in 20 years? 

What Do We Work On?

1. Potty Training
Learning to use the bathroom independently is a HUGE life skill! It would be much easier for Chelsea to socialize with friends, she will need less help from others, and it opens doors for day programs and living arrangements that otherwise wouldn't be available. 

I wrote about how we potty trained Chelsea HERE

2. Dressing Self
Chelsea needs to be able to get herself ready for school or work in the morning. That will mean taking pajamas off, finding clean, matching, weather-appropriate clothes and putting them on, taking care of snaps, buttons, ties, zippers, etc. 

There is a lot that goes into dressing one's self! To help Chelsea learn how to get ready in the morning, we developed a morning routine that we do diligently every morning. I blogged about it HERE.

I know it is WAY easier and faster to do things for Chelsea myself- to brush her teeth, get her dressed, make her bed, and she would happily let me! BUT, I don't want to be brushing her teeth for her when she is 15. I don't want to be getting her dressed when she is 30. 

It is much easier to make her do these things herself now when she is a manageable, teachable size, rather than an adult who has had a life time of not needing to do these things for themselves, so they now refuse and are strong enough that you can't make them. 

3. Personal Hygiene 
This one goes along with the morning routine above, as in we need Chelsea to wash her hands and face, brush her teeth and hair, things like that. But we will also be teaching how to take a bath/ shower. That she needs to use deodorant. When she is older, how to handle her period hygienically (oh be still, my soul!)

4. Health Care
We have been very fortunate that Chelsea is such a good eater! (Sometimes too good of an eater- she just ate cherry pits and stems today) She never complains about eating a variety of healthy foods. That is a big one here- your child needs to eat a well-balanced diet and take a multi-vitamin. 

Chelsea will need to know how to clean a minor cut and put on a Band-Aid, and KEEP IT ON. 

Exercise is important! Sitting in front of the TV all day isn't good for her body, so she needs to know that she needs to have some physical activity each day. 

Later on, she will need to know how to take her medication herself. Since she has osteopenia and a seizure disorder, that will mean a Calcium supplement and seizure medication. 

Get enough sleep! It is important to get enough rest, and Chelsea will need to be able to put down whatever activity she is doing at bedtime and go to bed, and stay there until it is time to wake up.

5. Cleaning
Who wants to live with a filthy roommate? It is important to clean up after ourselves. Starting when they are little, we teach kids to pick up their toys, put dirty clothes in the hamper, and clear dishes after eating.

As they get older, we teach them to make their beds, tidy their room, vacuum, and wipe up any spills they make.

Eventually, we want our children to be able to care for themselves, do the dishes and laundry independently, scrub the kitchen and bathroom, and things that make a house livable and neat. 

6. Food Preparation
This is a big one! People eat several times a day, and there are a LOT of steps that go into eating most of us never think about! 

How do we get the food in the first place? We need to think about what we need, make a list, go to the store, find each food on the right aisle, handle the transaction, go home, and put the food away in the right spot so it is available. During the summers, I have Chelsea do her own list with cut-outs from ads. 

Then we need to make sure our hands and cooking surfaces are clean, get the right ingredients (even for a turkey/ cheese sandwich!), make the food, and put everything back away so it doesn't go bad. 

So I want Chelsea to know how to make some basic things herself, starting with a bowl of cereal for breakfast, a sandwich for lunch, and how to heat up food for dinner. 

Eventually, we will progress to other things, like salads and pudding, meals from boxes, and things like that. But one step at a time!

Bottom Line:
WOW! That is a LOT that we as parents need to teach consistently! And when we already have a child that struggles with basic things and has behavior problems... It is a daunting task for sure!

What Do We NOT Work On?
Knowing we have to work on so many skills with our child and teach something for years on end will mean that some things get dropped. We can't do it all.

Only you know your child well enough to know what they need to know. For us, a lot of academic trivia will never be learned. Chelsea probably won't learn the types of cloud formations, or the habitats of different animals, or about photosynthesis. 

She will most likely not ever learn algebra or who discovered America, because those things won't matter to her long term. But you know what? She WILL know how to do some basic grocery shopping, make a sandwich, socialize with friends, do a job she enjoys, and shower. 

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. 


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.