Sunday, January 20, 2019

3 SATB2 Supplements

When you have a child diagnosed with SATB2 Associated Syndrome, there are 3 supplements you may want to consider:


1. Calcium and Vitamin D

One of the main symptoms of this genetic syndrome is that there is a decreased bone density from an early age, which can later lead to osteoporosis. 

In order to slow down the rate at which the bone breaks down, I give Chelsea calcium and vitamin D supplements. Make sure to do both! Vitamin D helps the calcium get absorbed! 



2. Probiotics
A common problem with SATB2 kids (though not across the board!) is very, very loose stools. And they get sick all the time, and for longer periods of time than other "typical" kids! SO- probiotics helped us with that! 

I don't give them all the time because it gets expensive, but will grab some about every other month, or any time I hear about a nasty virus going around. I also rarely use the same brand twice in a row, and will get the refrigerated kinds, which have a much higher concentration of the culture strains, which is better. 



3. Fish Oil


My favorite one to talk about!!! Kids with SATB2 often have decreased myelination of their neuronal axons (not enough "good fat" in their brains). Giving fish oil supplements can help with this.

With my SATB2 baby, I saw that she didn't lose her startle reflex for a looooong time, which the pediatrician told me was indicative of an underlying neurological impairment. Once I started her on fish oil at about 7 months, she lost the startle reflex a few weeks later. Coincidence? Possibly. 


With Chelsea, I gave her fish oil starting at about 3 years old, and that was when we started to see more speech progress. Again, it could have been a coincidence, since we were doing lots of speech therapy too. But many mothers have reported an increase in speech once they started fish oil, so I will keep it up! 

And funny story- when Chelsea started taking fish oil, her typically developing little brother always wanted some so he could be like his big sister. So I would always give it to both of them. And he turned out to be a little genius kid, so I have sometimes wondered if the fish oil played a part in that. 



So there you have it! 3 supplements that are great for SATB2 kids! 


Saturday, January 19, 2019

Getting Early Intervention

Here is a little bit about the early intervention process. If you are in the "People say my kid is behind in ___, and I don't know what to believe" phase, this article is for you!"

If you sometimes wonder if your baby is behind- in speech, in gross motor, in waving/ clapping/ whatever, here is my advice- GET IT CHECKED OUT! And I don't mean just ask the pediatrician if your baby is on track. 


Most doctors are eager to reassure the over-nervous new mother by saying that some babies are late bloomers, and everything is probably fine.

For me, I was ashamed to get Chelsea checked out by early intervention. I thought that if someone had to come to my house and teach me how to play with my baby, that must mean that I had failed as a parent. 


I was a offended and embarrassed, worried that everyone would think I was a dreadful mom because I couldn't even keep my kid on track for basic milestones. I already spent every waking moment with Chelsea. Was I not doing enough? 

SO- where do you go? 


Any pediatrician should be able to refer you to an early intervention office. This is a state run agency that has child developmental specialists, speech therapists, occupational therapists, feeding specialists, physical therapists, all that jazz! 


All you do is have your pediatrician write up a referral and send it into their office. The EI (early intervention) clinic will contact you to set up an evaluation. 

This is a FREE evaluation they do for your child. Someone will either come to your home or ask that you come to their office, and they will assess your child's abilities through a range of tests, and ask you a bunch of questions. 


Again- you don't pay anything for this evaluation, and they will look at all areas of development- problem solving (yes even for little babies!), speech/ communication, gross motor, fine motor, social, everything! 


If the clinic has had a large number of referrals when you are referred, you may be put on a waitlist. I had this happen with my youngest. They told me that they wouldn't be able to see me for 3-4 months. 

Knowing how crucial early intervention is, I then started calling their office every day to see if there were any cancellations for evaluations, and we were seen that week. The squeaky wheel truly does get the grease!


After they finish the testing, they will write up a report and review it with you. If your child is on track, they will send you on your merry little way, with you now fully reassured that your child is "normal". 


If your child is still struggling in an area, they will set up an individualized family plan for you. This could include a 1:1 therapist working with your child in your home, a group class at their office for ABA, horse therapy once a week, family training so you have some more ideas, all sorts of things!
That little cutie on horseback? Chelsea at 2 years old!


Now, when the plan is set up, they may or may not charge monthly for the services they provide. It will depend on your income. But even when you are charged, it isn't very much. Most families pay between $15-50/ month. 

So if you are worried if you baby is behind, or if you want to approach a friend, I would ask "What is the worst that happens? You will either go in and they say your baby is fine, or they say that an area needs a little extra work, and here are some tools/ resources/ ideas"

Good luck!!!







Wednesday, January 2, 2019

Disney with a SATB2 Kid

We just went to Disneyworld, and I was SO nervous about going! I had no idea what to do, what the "fast pass" meant, and I knew there was supposed to be some kind of disability pass, but didn't know how to use it. 


Luckily, I have some awesome friends who told me all of the secrets of how to plan an incredible Disney trip for a disabled child! So here is all I learned!


1. Download the Disney World app

It is free, and you will need it to sign up for fast passes later (more on those in a minute). It shows all the current wait times for all the rides, which is SUPER helpful. And you will be able to access photos and showtimes, etc. 

There are options to reserve dining and order food and link your hotel room, but I didn't use any of those. 


2. Fast Passes

Okay. Fast passes. Basically what this is a way for you to skip the lines on 3 rides/ experiences. You can sign up for whichever ones you want- character greeting, Splash Mountain, whatever. 


I recommend looking up the most popular rides/ those with the longest wait times, and signing up for them as early in the day as you can, and preferably close together. 


Because Chelsea is so into princesses, I signed up for the Ariel ride, meeting Cinderella/ Elena, and meeting Tiana/ Rapunzel. Those things were all fairly close together, and I was able to get them all done before noon. 

NOW, once you use those 3 fast passes the day(s) at Disney, you can get back on the app and select one more fast pass at a time. Once you wait until your time slot, and ride the ride, you can go back and choose another. The day of, there will be not as desirable rides/ times left, but still good stuff! We ended up using 6 fast passes- the 3 we signed up for ahead of time, and 3 more that day. 



The fast pass will give you a time, so "Ariel ride at 9:10" will mean that you have from 9:10-10:10 to get to the Ariel ride and get into the fast pass line, which lets you skip the entire standby line! It is nice that they give you an hour to get there, because there will be things you want to stop and watch. 

4. The DAS Pass

Right when we got to Disney (gates open at 8, and rides start at 9), we got Chelsea's disability pass. It was very painless- no in-depth questions or paperwork. They just snapped a picture of Chelsea and put it on her ticket. We just had to remember which one was hers. 


Now, the DAS pass is different from the fast pass. What you do is go up to the ride you want to go on, and the attendant at the front will scan your pass. They will tell you to come back at a time that is the same amount of time as the standby wait line. 

You cannot sign up for multiple rides with the DAS pass. Just one at a time. But if you work the fastpass and the disability pass, you should be on things all day. 

Our Schedule

I can't stress this enough- a mapped out, planned schedule will be a lifesaver!!! The park is big, so we did everything in sections. In the morning (at Magic Kingdom), we hit Fantasyland first. 


We scanned the disability pass to meet Ariel as we arrived, and got right on the 9:10 fastpass time for the Ariel ride. By the time that was over, the wait time was up and we went right in to meet Ariel. 

Once we met her, we scanned the pass for Dumbo and went to Pete's Silly Show because it had almost no wait time. By the time we came out of there, our wait time was up and we got right on Dumbo. 


You get the idea! I alternated using my fast passes with the DAS pass in an area of the park until we rode everything/ met everyone, then we would move on to the next section. 

Baby Swap

We had our 3 kids with us- ages 7, 5, and a baby. Obviously there will be a bunch of rides that don't allow babies. BUT- if you tell the attendant at the front that you want to do a baby swap, then one parent will ride the ride with the kids while the other holds the baby, then the kids can go AGAIN when the parents switch the baby- no line at all! They just stick you right on after swapping off. 


Stroller as a Wheelchair

Chelsea was very fortunate to win a big stroller at the first ever SATB2 conference. And that bad boy counts as a wheelchair! You can tag a stroller for a disabled child as a wheelchair and it was AMAZING! 

There were a couple rides when I took Chelsea up to scan the disability pass to come back later, and they said that if she is in a wheelchair, we could go right then, and just let us through. It was awesome! 

It also rocks at airports- we get the handicapped lane which is WAY shorter and less stressful. 


Photo Passes
At Disney, there are photographers all over the place! They will get pictures of you and your family, then scan your ticket, so that the photos will show up on your app for you to preview. They are expensive! My app said $70/ day or $200 for the whole trip. But if you have the budget for it, they do get some really incredible pictures. 



Companion Restrooms
Okay, I loved/ hated this. They have companion restrooms, which was super helpful for us since I needed to help Chelsea with potty. The Disney restrooms were very efficient, but I wasn't sure that I would be guaranteed a handicapped stall in the women's one. 


Maybe I didn't understand the concept of a companion restroom, because I saw a family of 8 squash in there and all go so that they could skip the bathroom lines. It was my assumption that a companion restroom was for people like a single dad with a young daughter and he doesn't want to take her into the men's room. Or a special needs adult that needs changed. 

If you are a typically developing person and just want to skip the line and aren't disabled/ have special circumstances beyond "I want to use this bathroom because the line is shorter", please don't. It is just as rude as parking in a conveniently placed handicapped parking spot. 


Parking
And speaking of parking- I really liked the handicapped parking at Disney! It was close to the gate (not super close, but WAY closer than the other lots!) so easy to get to the park in the morning and leave at night.


Rest Spot
I heard several people recommend going back to your hotel for a nap mid-day. If your hotel is close, do it! We were in a hotel further away because my son had a tournament there. 

So we went over to the Hall of Presidents, got the nice back row for wheelchairs, and all took a break! Comfortable seats, dimly lit room, and the show was a lengthy one, but not flashy, so the kids were able to rest, I fed the baby, and my husband loved hearing the history of the United States. Win for everyone!


Fireworks
The fireworks/ show at the end of the day is magical. I seriously teared up because it was that great. You need to get in front of the castle super early though (like up to two hours before!). So make sure you go potty, and bring some snacks. We ate our dinner and then went through that day's photos talking about our favorite things. It was a long wait, but by that time, my kids were so tired that they were happy to just sit and have a break. 


Overall Experience
I would absolutely go to Disney again! I feel like we had a much better experience and shorter wait times with Chelsea in our group. SO much fun! We were able to do everything we wanted to AND meet everyone we wanted to in a single day (at just one park). 




Tuesday, December 4, 2018

SATB2 7-9 Month Activities

When my older SATB2 girl, Chelsea, was a baby, I often wished I had a list of activities that would help her improve her motor skills. And now with Lily, I have the opportunity to document her progress and make those lists!


Lily is 7 months old right now, and here are some things she is working on with me, her PT, and her OT:

Core Strength and Stability

1. Bounce on a ball! Alternate between bigger bounces, little bounces, and rocking side/ side and front/ back so that your baby engages their core and works on balancing themselves


Reaching Forward
Have your baby sit on something or with someone, and hold out interesting toys for them to reach for. You want for them to lean forward and reach out for the toy and use their core to stabilize.


Tongue Protrusion
I JUST learned how to encourage Lily to pull her tongue back into her mouth by herself! Chelsea did the same thing- tongue hanging out a lot, and I would just push it back in. Watch Lily's PT- she will vibrate her finger on the outside of Lily's mouth. It is MAGIC!!!


Clapping Hands
This is a fine motor skill, and a difficult one for babies that can't coordinate bringing both their hands to midline at the same time. If you try and clap your baby's hands, they will clench into fists. So instead of holding their hands, go behind them and clap holding onto their upper arms


Bending Knees

To work on getting your baby used to not locking their legs (for bouncing later and bending to sit on their bum rather than fall flat), curl their knees up to their chest and rock them.

To work on bending knees, you can also have your baby sit on a low stool/ chair/ cushion, then stand up. Baby squats!


Tall Kneel Position
Being able to balance on knees is a very important skill! Any kind of play with toys on a stair or couch cushion when the baby is kneeling is great! This will help with crawling and then pulling to stand later! Tip: Make sure those toes aren't curled up under!



Sitting Up Independently
We already went over working on sitting when I place her in that position, so now we are working on getting into that sitting position by herself. 











Tuesday, November 13, 2018

Faith versus Fear

Parenting a SATB2 child (2 SATB2 children now, actually!) can not only be scary, it can be terrifying. There is so much that I am afraid of. 


What if my child gets abused and can't tell anyone?

How will we be able to financially prepare for the future when all her needs right now are using almost everything we have?

Will she ever have real friends, not just people being nice because she has a disability?


Is she getting a real education, or is the school just providing mediocre babysitting?

Does she feel loved enough when I am constantly correcting her misbehaviors?

Who will take care of her when Derek and I are gone?

The list goes on and on. 

And those are all, real, legitimate fears. 



In church on Sunday, we reviewed the talk "Be Not Troubled". At first, as the women in my church group discussed it, I felt like many of the things didn't apply to me. 

They spoke of standing in holy places so we can feel the Spirit, and I thought, "How can I go worship when I can only sometimes find time to shower?"


They spoke of how we need to have faith instead of fear. I thought that my fears were too great to overcome.

But as I pondered about it, I realized that all these principles still apply to me, and that my faith in Christ's love and atonement is greater than any fear I could possibly have. Ronald A Rasband, who delivered this talk, said "Since ancient times, fear has limited the perspective of God's children." 


I CAN stand in holy places. Perhaps I can't go monthly to the temple to worship, but I can do my best to pray always and make my home a sanctuary from the world, and feel the Spirit's presence there. 

I CAN remember that after death, our family will be together forever, all of us whole and without imperfection. That is the perspective I need to remember when I am afraid of tomorrow. Tomorrow means nothing when compared to eternity.



Yes, my fears are very real, and sometimes seem insurmountable. It is hard to think about forever when I am scared of my child hurting right now. 

But I also know that Christ can heal any heart. I try to remember that while imperfect, I am still doing the best I can, and will continue to do so. I am not a peaceful, kind, or happy mother when I am constantly freaking out about the unknown future. 


These fears are a way for me to realize the areas of my life that I need to focus on, work at, and gain confidence in, but if I am paralyzed by fear, what is accomplished?



So as I continue to prepare for the future, I can invest the emotional energy previously spent on fear into loving my children and preparing a path forward, so that as we step forward into the future, we will do so unified and strong, ready for whatever comes our way.