The Quiet Baby

I get complimented at least daily on how well-behaved and quiet my baby is. And I always graciously thank them and say that she is by far my easiest baby. Because it is true! She is a very quiet, well-tempered baby.

But some days, those compliments tear at my very soul. 

Because my baby is very, VERY quiet. She doesn't babble. She doesn't coo. She rarely even cries or fusses. 

And babies NEED to do those things. That is what teaches them to speak. Because of the SATB2 diagnosis, speech will be very, very hard to come by. 


I remember with my (typically developing) son as a baby, I thought I would lose my mind sometimes because of his constant, incessant crying and very loud babbling and squawking. 

But he is now a kid hat never stops talking. And even though I do wish sometimes that he would allow me to have a little bit of mental peace, I am grateful 100% of the time for his speech, even if it comes at the price of no silence ever around him.

With my SATB2 baby, I work every day on trying to elicit ANY noise out of her, trying to get her to realize 'hey, I can make a sound!' 

If you have a baby or toddler and feel like your head is about to explode or ears drop off from all the noise, and wish that your baby was as quiet as mine, just remember that other moms wish their babies would make noises like yours. 

"That Problem"

When I was first learning about Chelsea's diagnosis, I went and met with a geneticist. He was supposed to tell me about the syndrome and advise me about the likelihood of this happening again in a future pregnancy. 

After he gave me information I already had (he had googled it a few minutes before meeting with me), he started to discuss the likelihood of another child having the same disorder. He said that it wasn't likely, but that if we did have a pregnancy that tested positive, they could "take care of that problem" for me. 

That one sentence felt like a punch to the gut. I remember sitting there, holding my sweet little girl, and looking at her, wondering if the whole world would only ever see her as a problem.

I wondered if people see her life as less valuable because she has a tiny piece of DNA missing. How many people would not hesitate to end her life because they want a "better" baby? 

Chelsea brings her own set of challenges, it is true! But no child is without any problems. And even with all those challenges, Chelsea brings joy to our lives. She is excited about every little thing, and has an infectious smile. 

I hope that others see the value in my daughter, instead of thinking of her as eyesore or problem to be kept away from the "normal, healthy" public.

I think that every life is valuable. Do you?

When I Grow Up

I had a conversation last week that I couldn't stop thinking about.

I was in a meeting with some of Chelsea's therapists and teacher, and someone mentioned, "You know, Chelsea is doing SO well at following her visual schedule! That is really going to help her once she is working in a laundry room or something."

I know that many, if not most, life skills children are taught to do things like wiping tables, doing laundry, etc., not only for their own self-help skills, but also as a future job. Many of those kids do go on to be janitors and fold towels. I have nothing at all against that!

But that isn't what Chelsea wants to do.

Why is it that with typically-developing children, we ask them what they want to be when they grow up, and when they say they want to be a fireman, or teacher, or doctor, we encourage them and help them lay out a plan, but special needs children get overlooked?

Are Chelsea's dreams of being a dress model and dog walker less important? 

Should we assume that she will only be able to choose between being a janitor or laundry girl, and therefore only train her for those two options?

My vision for Chelsea's future is so much greater than that! I truly believe that Chelsea should get to do whatever she loves when she grows up.

Her most recent ambitions are 
1) A model
2) An elephant keeper 
3) A dog walker
4) A Disney princess

So you bet I will do everything in my power to help her achieve whichever career field she wants to! If she wants to help with the elephants, I will take her to the zoo as often as she wants and see what junior zookeeper programs I can find for her.

If she wants to be a princess dress model, I can learn how to do hair and makeup so she feels beautiful, and have photographer friends get pictures of her!

The most important thing is that I want Chelsea to be happy. To be excited to wake up in the morning and "go to work" when she is older. I want her to enjoy what she does, whether it is an actual paid job or a program that she attends and adores. 

I don't want her stuck in a job that someone assigned her and some company feels obligated to give a pity job to the girl whose is "slow", and no one talks to her during the day. Doesn't sound fun, does it?

Now, yes, I do know that that will require quite a bit of work on my part. My husband and I will need to plan and save and save and plan. 

But I have great hope for the future. 

I love Chelsea and love her dreams and hopes for the future, and I am determined to give her every chance at living her dreams. 

Baby Speech Therapy

First of all, I am NOT a licensed speech therapist. But I have done a lot of research and practice with Chelsea over the years. 

When Lily was diagnosed with SATB2 Associated Syndrome, one of my comforting thoughts was that I already knew a lot of what to do. So, we leapt into action! 

How do you get a silent baby to make noise?

All the SLPs I talked to didn't have any advice for getting Lily to make noise. Most people would be thrilled with a nice, quiet baby, but not babbling won't help the baby learn to talk. 

So we came up with our own activities for eliciting speech. 

1. Mirror Play

This has been amazing!!! We play in front of a large mirror on the floor for a half hour or more each day, with Lily slobbering all over it and slapping the surface. 

This is great for many reasons! She is learning that the baby in the mirror is imitating her, and babies and toddlers love to "be in charge". 

For speech reasons, she can visually watch in real time as she makes the O shape with her mouth what noise comes out when she does. It is particularly helpful if you sit with your child and also do the same noises/ oral motor shapes. 




2. "Wake Up" the Mouth

Do you know the feeling right after you brush and floss your teeth and you notice the parts of your mouth more? Same concept! But with babies, you can use oral motor stimulators (we got an Ark tool from Lily's OT), or just a little chewy toy.

Pressure around the lips/ mouth will also help. Basically the goal here is to create awareness of the mouth's muscles so the baby can then use them. 

We do this during diaper change time, because it is frequently throughout the day. I just keep the tool right there by the diapers and wipes, and will brush around in her mouth for a minute or so each time. She loves it!

3. Lip Buzzing

Closely related to the previous idea, but on this one, you use your finger or hand to rapidly vibrate the baby's lips. Then the baby will (hopefully) make an "aaaah" noise. 

4. Highly Desired Activity

Think of something your baby loves. I mean LOVES. For Lily, it is trying to grab running water. Then, any time you can, reward a noise, ANY noise, with that highly preferred item/ activity. 

So while the bath is filling up, I turn the water off, then on again once she makes a sound. When passing water fountains, same thing! In the kitchen making food, the sink is right there. 

5. Get your baby to squeal

Most parents don't have to worry about this. But when a baby is very very speech delayed, he or she won't laugh to squealing almost ever. So our job is to play with them so much that they squeal from excitement. 

The Most Important Tip:

If this isn't fun for you and your baby, then STOP!!! Therapy gets a bad reputation sometimes, with people thinking that is has to be drill, drill, drill. And your baby will hate the time and you will hate the time if it isn't enjoyable. Call it play time if you want, just make it fun!!!

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! 

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!!!

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).