Sunday, June 9, 2019

Signing with a SATB2 Baby

This is my second time around trying to teach sign language to a baby with SATB2-Associated Syndrome. 

My First Approach
When Chelsea was little, I didn't start trying to get her to sign until she was about 18 months, and then learned a bunch of signs and tried to introduce them all at once. 

I would also forget to do hand over hand and modeling for a day or two, then try to squash a lot of learning into one day to "make up" for the forgotten days.

She did catch on after about a year, but many of the signs were jumbled together or not clear. I knew what she meant, but many people who could understand sign didn't know. 

Chelsea does use many signs- she had 800 at one point! So my first method DID work, and has helped her communication tremendously. But I still hoped for a quicker, more efficient method to teach babies earlier on. 


My Second Approach
With Lily, I started very slow. Starting at about 8 or 9 months old, I started signing "book" a couple times a day when I was about to read to her. 

At a year old, I bumped it up to modeling 3 times and doing hand over hand once or twice PER BOOK every day. We usually aim for 20-30 minutes of reading each day, so that is a LOT of repetitions!

And it worked! She started signing book consistently at 13 months (her age now). 

I chose the word "book" for several reasons:

1. It doesn't require much fine motor skill

2. It is easy for anyone to understand, those fluent in ASL or not at all. 

3. She LOVES books and it was very motivating to her

4. It is a  concrete noun. I didn't want to teach more abstract concepts (please, thank you, more) yet. You sign book, you get 1 book. Done. 

5. I can reinforce that sign every single time she says it. Some motivating words can't be reinforced every time (like ice cream or swim or Daddy)

Why This Method?
The key for the first couple words isn't to teach those words specifically. The important thing is that the baby is learning to communicate. They are learning that if they do a certain action, they get rewarded right away with awesome stuff. 

(Can I just emphasize that you MUST be 100% consistent here!!! You are teaching that an action has power!) 

The first day that Lily understood that if she signed book, I would stop everything else and read her a book, she signed that on repeat for about 5 hours. Every time we would finish, we would sign it again. And by golly I sat and read non-stop all that time! Thank goodness Daddy came home after 4 hours and took the last hour!
100% consistency!!! Dinner, bath time, anytime!

Your child is learning that they have power. That they can manipulate the world around them. They can make things happen and get what they want!

The longer I wait to introduce sign when my child wants to communicate a word/ want/ need, the more likely that my child would develop some sort of less desirable compensatory behavior to get what they desire (screaming, pulling things down, etc.) 

Moving Forward
Right now, Lily just knows the one sign- book. She uses it constantly, and she is clearly thrilled that she can get us to drop anything and everything to rush over and read her a book. She is getting her needs met!

We will continue to reinforce this sign 100% of the time for a couple weeks, then add in a sign that is TOTALLY different (but still easy to carry out and has a concrete meaning). We are thinking of adding on:

Up (we pick her up every single time she signs this)

Dog (give her a little stuffed dog and make the dog bark and pretend to lick her when she signs dog)

Water (we will slightly modify this to compensate for baby fingers not being as dexterous, but she will get to splash water or take a drink when she signs water. She loves it!)

Song (sing a song every time she signs song)

Eat (slightly more abstract, but she gets a snack every time she signs eat. We will probably have 2 or 3 options out for her to choose from at any time, then will eventually begin transitioning into 2 word phrases like Eat cookie or eat cheese)

The first 10 words are the most difficult and time-consuming to teach, because you aren't so much teaching the physical sign as you are the concept of communication, and reinforcing those signs every time. 

Dishes will get left undone, dinners will be PBJs for a while, but your child will be able to communicate!

Thursday, June 6, 2019

Staying Little Forever

As May turns into June, we all see graduating seniors go off on their new life adventures- starting jobs, going off to college, all those grand plans!

We attend parties and senior nights, and pat the backs of moms who worry if their kids will only eat Ramen now. 

I was at a party for a graduating senior when the mother of the senior gave a little speech. She spoke all about her child's accomplishments, how proud she was, and then "I just wish I could keep you little forever!"

I knew what she meant. I knew that she misses that daughter's sweet innocent childhood, and playing games of Monopoly and eating popsicles together on those carefree afternoons. Of the sticky hands and sloppy kisses and constant "I love you, Mommy you are the best"s. 

And I am sure I will think the exact same thing when my son gets older and prepares to go out on his own. 

But OUCH that sentence hurt. 

Because my child will be little forever. 

She will always believe in Santa Claus. She will always want to help cook but make more mess than food. 

She will always need constant supervision and care.

She will always want that bedtime story, and need her hand held in the parking lot. 

She will always want to play Barbies and do puzzles on the floor. 

And you know what? I don't wish that I could keep my child little forever. 

I wanted her to grow up, to graduate high school then college, get married and have kids, drive, travel, have a job and hobbies. 

I wanted to be able to ask her about her day and get an understandable answer back.

I wanted to have her call me from college and hear about how she used dish soap in the dishwasher instead of detergent and filled the kitchen with bubbles, and laugh about it together.

That was what I had imagined. That is not the future God has in store for Chelsea, but that is okay! Because really, I am the lucky one! 

I don't ever have to worry about Chelsea sneaking out of the house to see boys, or stress about is she is being a safe driver. 

I will always have a built-in ice cream buddy who loves being with me and likes books and going to the zoo! We will get to host stuffed animal tea parties while other moms wonder when their kids will ever call. 

The magic of Christmas will never fade over time. 

I will always have a child who is little. And even though it hurts more than I can describe sometimes, it is okay. Better than okay. I love my life and feel blessed to have Chelsea in it!

I know that when my son's time comes to leave the nest, I will sob and wish for those days back when he was little, because they really are sweet and I LOVE these days! 

I sometimes wish my daughters could grow up the way they are "supposed" to, and like it says in Welcome to Holland (below), the pain of that never, ever goes away. But life with them is beautiful, and I always get to keep that with me.

Welcome to Holland
By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...…

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, May 28, 2019

Private vs. Public Speech Therapy

There is a vast chasm of difference between the quality of private and public services. For example:

If your child is struggling in school, will you get better results by hiring a private 1:1 tutor 3x/ week, or sending your child to the school group study hall once a week?

This concept is seen in abundance in special education services. Here is my experience with private versus public speech services.

Public School Speech Therapy
1. Offers the bare minimum level of services to kids

2. Not enough SLPs for number of kids

3. SLP cannot specialize, because they have to meet all the different needs of all the different kids

4. It is free! Thank you tax dollars at work!

5. You can advocate and get more services IF you know how

6. Communication with parent is very limited unless you got a rockstar SLP

7. Speech therapy goals must pertain to education. You can't pick whatever you want. Generally, this is pretty easy to work around.

Private Speech Therapy
1. SLPs specialize in different areas, so you can find an SLP who understands exactly how to work with your child and how to handle that specific disability

2. Specialty comes at a cost. The more specialized the SLP is, the more they charge

3. Insurance will typically cover 20 visits a year max, after you meet your deductible. So expect to shell out a LOT of money if your kid needs long-term speech therapy 3-5x/ week

4. The SLP works directly with the child. Parent is encouraged to participate and carryover at home

5. Private SLPs really work hard for progress and want your child to progress as much as possible as quickly as possible 

6. Generally, SLPs have openings in their schedules for more clients. They aren't majorly overbooked like the school SLPs.

7. You get to pick any goal you want your child to work on

There are pros and cons to each side. Obviously, you will get more results and faster with a highly specialized SLP. When Chelsea went to Nancy Kaufman's boot camp, she made more progress in a week than she had in nearly a year of school speech. But we were also charged more than $100/ hour.

This year, we pulled Chelsea completely from private speech (for a number of reasons), and we saw more regression than at any other point in her life. 

Personally, I like private services whenever we can afford it. The problem is, it gets very expensive very quickly.

Monday, May 13, 2019

Special Needs Mom Anger

When a person is going through the stages of grief, it is never a neat line with a starting point at diagnosis and an ending point a little while later, and you stay in acceptance. You cycle through the stages over and over. 

Normally, I am a very positive person. I have always been an optimist. But on Mother's Day, I had a total meltdown. I'm talking ugly cry, snot everywhere, gasping for air because it felt like an elephant was sitting on my chest as the weight of my reality set in.

I was so angry and resentful toward everyone and everything. 

Even though I love my child unconditionally.

I still felt so angry. 

I felt angry at insurance for not covering the seizure medication and speech therapy and occupational therapy and medical tests that my kids so desperately need.

I felt angry that the government programs are so poorly run and underfunded that the wait list for help for severely disabled children in our state is 13-15 years long here. 

I felt angry that we had to work 10,000 times harder and longer for a single word than other kids.

I felt angry that other families can plan vacations or be spontaneous when we may never be able to.

I felt angry that my husband has had to work multiple jobs, almost every waking minute, for years, just to cover basic living expenses and medical care for my girls.

I felt angry that our weekends are monopolized by things like trying to teach Chelsea how to wipe after going potty when I just wanted to have fun family bike rides or go to the water park.

I felt angry that I have been deprived of the mother/ daughter relationship I wanted. I won't get to stay up to talk over that first date, or get invited to stay with my daughter after she has her first baby.

I felt angry that I don't have time or energy for my own wants because I am in constant crisis management mode at home.

I felt angry that the schools do the bare minimum and then try to take credit for the achievements that I was solely responsible for after hundreds or thousands of hours of work.

I felt angry that I have to fight for every minute of service, every dollar of insurance coverage, everything.

I felt angry that people are scared of Chelsea when she makes loud noises.

I felt angry that other people can plan for their retirement dreams, and the only thing in my future is caring for disabled children.

I felt angry that Chelsea has negative behaviors still after we have worked on them for years and years.

I felt angry that I have dealt with more potty accidents from just Chelsea than most moms who have 6-8 typical children deal with all together.

I felt angry that my house can't stay clean when I just want some semblance of order in my otherwise chaotic life.

I felt angry that I wanted a clean house when I should just be enjoying making messes and memories with my kids while they are little.

I felt angry that other parents can relax and enjoy their children when I have to capitalize on every second, working in therapy when it would be a million times easier to have a kid that just learns on their own.

I felt angry that people use the R word.

I felt angry that people don't want to hear about the difficulties I face, because they just want to hear that everything will have a happily ever after.

I felt angry with the injustice of me getting 2 special needs kids when I am an awesome mom and made sure to do everything right before and during pregnancy to insure my child's health

I felt angry that I was feeling angry about everything when I have so much to be grateful for. 

I know this will pass and that I will return to my normal self, but it is still difficult to process these raw emotions sometimes. I'm not looking for pity or sympathy, just trying to show what some of that anger cycle of grieving looks like for me. 

Monday, May 6, 2019

Weight Gain for SATB2 Babies

I have two kids diagnosed with SATB2 Associated Syndrome. We found out about Chelsea after years and years of searching for a diagnosis. With Lily, we found out when she was just a month old, and had already been down that road before, so we have a major head start this time! 

Because I already knew that poor weight gain was highly likely for my second SATB2 sweetie, I found as many ways as possible to sneak in calories! And at a year, Lily weighs about 6 pounds more than Chelsea did at a year old, so I think it is working!

1. Extra Feedings

Okay, this is your golden ticket when you get an early diagnosis and are breastfeeding your baby. Babies DREAMFEED!!! Use this method, use this method, USE THIS METHOD! About every 2 hours after Lily went to sleep, I would go and feed her. Yes, that means setting alarms and waking up multiple times each night, but it is SO worth it!

I just pick her up, and let her nurse until I knew she had a good feeding, then gently put her back down. She never wakes up and boom, she is good to go! That is an extra couple hundred calories each day right there!

2. Peanut Butter, Cottage Cheese, Avocado

Once Lily could start on solid foods, I started pushing high calorie foods as often as I could. I weeded out the ones Lily didn't care for (like Vienna sausages, and honestly I couldn't blame her on that one!), and offered ones she liked just about any time I passed the kitchen.

3. Fish oil

I really do believe in fish oil! It helped Chelsea with speech, and I am hoping that by starting Lily early, she will get more speech progress, and earlier at that! I read that fish oil helps with brain axon myelination, which Chelsea was low on when we had an MRI done on her at 2 years old. 

Before Lily could take this herself, I took some, hoping that it would go through the breastmilk to Lily. Not sure if it did or not, but Lily was on her own supplements at 6 months. We use the Nordic Naturals ProEFA 3-6-9 kind. 

Tuesday, April 30, 2019

Gift Ideas

I always love hearing what gifts are hits with kids- sometimes ideas run dry! Here are some of the best presents my kids have ever received. 

Spin Again
This is seriously the BEST baby toy for ages 9 months up to 3 years old! I've even seen adults go nuts over it! The rings spin down when you place them on the center pole. Doesn't sound all the exciting, but it mesmerizes kids!

Ball Tower
This is a great cause and effect toy. Similar to the spin again toy in that you put something on the top and watch the ball roll down. Kids seriously love this! Same age range- about 9 months to 3 years old.

Magna Tiles
This is an AWESOME toy! My son got some for his birthday a couple years ago, and they get played with daily still! By him, by Chelsea, and even Lily likes to pick them up and play with them! They stick together magnetically, and are really fun to build with and encourage creativity!

I can't imagine a great gift ideas list that wouldn't include books. We give books for all occasions at our house. Some of our top favorites (so hard to pick!!!) would be the Berenstain Bear series, Gerald and Piggie books, and any fairy tale. 

Backyard Coaster
This was a gift to my kids and is used constantly!! It is a little coaster that you ride down and is lots of fun! The kids will ride this over and over outside, and I love it!

Water Wall
I plan on getting one of these for Lily. Pour water in the top, and watch it pour down! I've tried to make these before, and it isn't ever the same. 

Assemble Yourself Kits
Lots of different companies that offer these. My son got one from his aunt where he had to assemble a pick up claw/ crane and was SO proud of the toy he built!

Butterfly Garden 
A gift for Chelsea that she was fascinated by! We bought at butterfly garden (use the 40% off coupon at Hobby Lobby!) and sent away for caterpillars using the code inside. Then we got caterpillars in the mail, and watched over a few weeks as they turned into butterflies.

Raffle Basket
I wasn't sure what else to call these. You know when you attend a raffle and they have stuff for a Harry Potter night, or a Gardening themed bucket or whatever? Find some fun things for an upcoming trip to the beach, or movie with a big popcorn bucket and baggies of microwave popcorn.

Doorway Trapeze 
Super super SUPER awesome gift for active kids! We hung this up in a doorway, and the kids swing on it all the time. IT is especially nice for rainy days or when it is brutally hot outside. We can still use up energy!

Busy Bags
I blogged about these HERE and HERE. These are little bags you can make with quiet activities. PERFECT for about 4-8 years old, depending on what kind of bag you make. 

Play Kitchen
This is a great imaginative play for older kids, and great cruising height for babies and toddlers! 

Miss Amazing Pageant

Last week, Chelsea was able to participate in the Miss Amazing pageant in Houston, TX. This is an annual event in most states in the United States, and many girls with disabilities participated. There were sections for interviews, evening gown wear, a talent demonstration, and the ending crowning ceremony. 

Chelsea just GLOWED the whole time! Here is how it ran:

Several Months Ago
We registered Chelsea (we had signed up for a reminder email when it was time to register last year). Registration was very easy, just answered some questions about age, that we lived in Texas, and a couple other things. The most difficult part was just uploading a picture of her and maybe the first page of her IEP. That was all! The only cost to participate was a few cans of food that would get donated to a local food bank.

The Week Before
Because Chelsea had wanted to participate in the talent portion of the show (that part is optional), I needed to send in a music clip. So I did that and responded to an email when I introduced Chelsea, said what made her amazing, and a couple getting to know you questions. I also programmed her talking device with answers to the interview questions that had been sent out.

The Day Of
1. We arrived at the theater where the show would take place (they get different venues, and this time it was at a ballet center downtown), and lugged in all of our makeup, hair stuff, dresses, shoes, and all sorts of fun things!

2. We signed in, dropped off our cans to donate, and took an orientation tour of the facility.

3. There was food for the girls and parents, so we got some snacks, and we set up where we wanted to get ready

4. Girls were coming in all the time at this point, and I realized that the dress Chelsea picked was super plain in comparison- everyone else had full out ballgowns! 

5. We got Chelsea in her interview dress and did her hair and makeup. Her buddies were there, and encouraged me to just relax and enjoy the show; they would take care of everything.

6. Chelsea made friends with some other girls and got to pick an escort (a guy in a very nice suit or tux that would walk her around the stage- SO CUTE!!!)

7. We took pictures by the photo booths they had set up for the girls

8. The show started!!!

The Interview 
All the girls would come out and answer questions. It was so cool to see all the different methods of communication! Chelsea used her AAC device, other girls spoke, others signed, and one used her sister to speak for her! 

They answered questions like "What is your favorite color?" and "What do you want to be when you grow up?" and my favorite "What makes you amazing?" 

It was super relaxed, so some girls just went up and said something like "My name is Fiona and I am 14 years old". Others interacted with the emcee and joked around. All the girls were cheered on. 

Chelsea was super sweet during her interview, and said that when she grew up, she wanted to be Snow White at Disneyworld, and an elephant keeper at the zoo. 

The Evening Wear
Each girl modeled a dress of her own choosing. It was so sweet to see how special and fancy each girl felt! Chelsea was just glowing the whole time. 

Part of this section was having an escort. Some girls had a dad or boyfriend or someone they already knew escorting them, and others had volunteer escort. Chelsea had a volunteer escort, and he was super sweet with her, escorting her and helping her with her device. 

Talent Show
Some of the girls showed a talent they had! My personal favorite was a girl in a wheelchair who did a comedy skit and I laughed a lot! Chelsea danced to a Snow White song with her granddaddy, who is an excellent ballroom dancer and made her look great! 

The Crowning
This was really cool- all the girls got a trophy and crown, and then there were some queens crowned from some of the sections of girls 10-28 years old (I think- I didn't [ay much attention since Chelsea was too young to compete in those sections). The girls who win their division go on to nationals. 

Chelsea LOVED her trophy and crown, and took them to school to show her class 


All in all, I thought that this was a wonderful program! Very inexpensive, made Chelsea feel like a princess for the day, and I cried many tears of happiness, seeing Chelsea shine. We plan on doing this again for sure!