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!

Thursday, April 11, 2019

SATB2 Baby Cruising

One goal we have really been targeting with Lily is building up to walking, and that means- CRUISING!!!

We were so excited that she learned to crawl quickly, and then we hit a little bit of a plateau in gross motor development. But we got some new ideas, and here are some things we do to get her ready for those first independent steps!

Basically, this means that we get her up and standing and moving along furniture as often as we can! 

A great motivator for Lily is the bathtub! She loves moving over to the running water, and get rewarded by playing with the water. 

This will mean push toys (NOT the walkers that they sit in) to develop muscle memory for walking

This will mean letting the baby cruise on EVERYTHING- stairs, beds, couches, the wall, whatever is a good height. I really like this table at her early intervention class- they roll balls around on it, and it has foam padding to prevent injuries and the balls rolling off. 

Make it motivating and fun to stand! Anything that encourages them to stand up- against a toy, to spin toilet paper wildly and gleefully out of control- totally worth it to develop those skills!!!

Monday, April 1, 2019

The Long Haul

With any chronic disability, there is no finish line. There is no half time. There is just the caregiving day in and day out, with no breaks, no light at the end of the tunnel. 

I'm not saying this to be an Eeyore. It is an attempt to let people know that there is no quick fix. 

In a culture surrounded by instant gratification- fast food, instant streaming entertainment, click a button to donate to a charity... We have grown accustomed to seeing results in a very short period of time. 

So anytime someone has a chronic illness, something that never goes away, people are less likely to help because they can't see quick results because of their efforts. 

When Chelsea was little, I did a summer of fundraising to get her speech therapy. We worked 5 jobs between myself and my husband, did a GoFundMe, we asked family members to help, and church members donated a ton of things for a huge yard sale. It was unbelievably helpful and I cried many tears of gratitude. 

But time and again as I was trying to do anything to get my kid help, the same question would be asked. "How long will it take?" 

It would be asked different ways, like "How much money will the speech therapy take?" or "When do kids with this diagnosis start talking?"

 Everyone wanted the timeline for when Chelsea would be "fixed."

I tried to explain to a school district professional (head of the special ed program, actually, which makes this story all the sadder) how serious and long-term this diagnosis was. 

I tried to explain that there was no band-aid fix. That 200 or even 2000 hours of speech therapy wouldn't "fix" my kid. 

And I will never forget her response. She said, "If she needs that much help to just get a couple words, you need to just put her into a group home and focus on the rest of your family."

My heart broke open. 

Was my child worth less than another child if she don't have the same capabilities? 

Are people only willing to help until a certain dollar amount is reached, and anything over that is too much to invest into a person? 

Why is it that people are willing to fix a broken arm, or hire a tutor short term, but a long-term fix is too much work?

How is it that schools and insurance are willing to help when there is a major crisis (a child is about to fail a grade badly, or someone is about to commit suicide), but anything to catch that person up is too much work and not covered by an IEP or insurance?

Do people see mental health, speech, and cognitive functioning as a luxury? As in, if you have it, great, but don't expect anyone to help if you are struggling before you fail. 

Right now, I have an uncle in rehab, trying to recover from additions and mental illness. 

People will hear alcoholic or mental illness, and suddenly, that becomes the label. 

They don't consider that this is a dad who is an awesome chef, tells hilarious stories, and likes to go fishing with his kids. 

They don't look at how he tried to get therapy and it wasn't covered by insurance, so it wasn't affordable, and he tried to find another way to numb the severe depression he faced daily. 

People don't see the years of trying to find a way to get help for a mental illness, they just see a guy pop up on their newsfeed who has those labels of "alcoholic" and "borderline personality disorder". 

So they scroll past, thinking what a shame, but somehow concocting in their mind an image of a person who doesn't need help, or think that it isn't their problem, so they move on. 

They don't think that this person could be someone like your husband or brother or best friend who is desperately trying to get help, but it is such a taboo topic, so help isn't offered. 

When people see a child with a disability, it is like they assume that the family must have medical expenses covered by insurance, or be on a government program that eases the financial burden, or have family helping. 

Guess what? The majority of the time, that isn't the case. 

The majority of the time, that family is being financially crippled as they fight tooth and nail, every day, to make sure their child is okay, and has access to the OUTRAGEOUSLY expense therapy and treatment that is needed. 

But that isn't a nice happy topic, so people don't like those stories. 

You want to see the picture of the cute down syndrome kid  smiling and reading a book, or planting a seed, or playing at the park. You want to think that everything is okay. Even when you hear that there are hard times, you picture a brief tantrum that is quickly resolved. 

People either turn a blind eye to the struggles, or else are horrified and cry poor parenting when the family has to physically restrain their special needs child from harming anyone (including themselves) or anything as they melt down. 

They assume that all kids learn to walk and talk because severely disabled children are often still sent to special schools away from "normal" kids. 

It is impossible to explain the depth and breadth of caring for someone with a long-term disability, whether that is a child with an intellectual impairment, or a spouse with debilitating depression and anxiety. 

It can't be adequately explained, only experienced long term. When someone babysits a special needs child, that isn't experiencing what it is to wake up every day for that child's entire life and feed them, dress them, and prevent them hurting themselves. And caregivers need a lot of love and support.

People say they wish their babies would never grow up, but I can't think of a single special needs family that would say that. We desperately wish that we could see them grow up, become self-sufficient, and fly away from the nest. 

Parents love their kids. When they break their arm, you fix it. When they make poor life choices, you cry and still love them and want them to improve. When you have a child with a disability, you grieve but still love them and care for them and want them to improve every day, even if they can't ever be truly "fixed". 

Disabilities aren't fixed quickly. We are in this for the long haul!