Bowling, Cascarones, and Living a Good Life

We are going on a month into kindergarten and Christian is doing great!

He's making friends and I'm told he has "helpers" now. He also has a curly, little mohawk due to him needing a haircut. I gave him a comb over two weeks ago and his aide told me the kids were sad to see his mohawk missing. Hope they're not sad next week when we cut his hair!

Christian has also been going bowling every Wednesday with Special Olympics. His aide sends me pictures and I think we might join him next Wednesday to see what it's all about.

Christian also got new boots.

Superman, of course.

We worked on school projects. With enough support, Christian did all the finger painting himself. He's very good with his pointer.

And we get smiles like they're nothin' special. But we all know they totally are.

Sunday morning mess.

I brought home Christian's and Lola's first cascarones. I asked Christian if he wanted to bop it on Lola's head to break it open. He immediately gave his eye movement for "yes" and smiled without any hesitation. Even Daddy saw it. That kid knows what he wants and what he wants is to hit his sister on the head with an egg full of confetti.

Confetti was everywhere for days. There may even be some still in his chair.

When I saw the pictures of Christian bowling and I picked him up from school that day I thought - 

He has a good life.

Despite his disabilities and what he'll miss out on, we promise to him we'll make his life the best we possibly can. The sky is the limit for my boy.

We promised it in the beginning and we promise it now. 

One more thing before I go. I had the opportunity to review a really cool fundraising resource! I think if you're a family with a child with special needs, check out my review! Seriously, I wouldn't peddle something I couldn't stand behind. Especially not here. Click here to learn about Teespring.

A Wheelchair Accessible Disneyland: The Happiest Place on Earth!

A Wheelchair Accessible Disneyland

The Happiest Place on Earth

I'm just going to come out and say it.

Disneyland is hands down, undeniably, the happiest place on earth. Especially for families who have children with disabilities.

My son, Christian, uses a wheelchair. So when we decide to go places as a family, we always take into account the maneuvering that's involved. We certainly don't let anything get in our way and we work around challenges and obstacles, but we definitely prefer places like restaurants, zoos, and parks that are handicap accessible. We're a little biased like that.

There is simply no place like Disneyland. And here's three reasons why:

Rides

All of the rides in Disneyland are handicap accessible. All of them. There are different levels of accommodations made on specific rides and Disneyland provides a list on their website with every ride and the corresponding degree of accommodation available. Click here for the list.

What does this special accommodation look like? Some of the rides, like the Dumbo ride and the Teacups, offer larger doors that swing open to provide more room to get a rider in and out. 

We were able to transport in and out of the Teacups easily because of the large entry way to the Teacup. He made sounds through the whole ride!

There are also rides that offer full wheelchair accessibility. The Jungle Cruise and It's A Small World are adapted so that Christian can stay in his wheelchair, roll on to a platform and be lowered down into the ride.

It was like he had his own chariot! It was awesome because the platform sits him high above everyone so he can get a good look at everything.

On the carousel, we were able easily roll him on and off the ride.

That blur is Christian on his way off the carousel. See how easy?

There are also separate lines for guests with disabilities. This cuts down on wait times for everyone involved.

The Cast

The "cast" at Disneyland is amazing! And the experience with Christian was beyond my expectations. They would actually go out of their way to make sure we knew a ride was adapted for Christian. A cast member from It's A Small World saw us walking by and called out to us saying, "Would you guys like to ride It's A Small World?" He can ride it in his wheelchair!" 

Something also to mention is the kindness and love they show to all children and guests of Disneyland. Christian was treated no different than any other child. Ariel asked to meet "the prince" when she saw him. He was sleeping so he missed his chance to meet the princess but she went out of her way to come over and meet him. 

Goofy even bent down to say hello to Christian and give his hand a kiss.

We don't know if he liked it, but it was still appreciated by Mom.

The Magic

The magic of Disneyland is still there whether you have a wheelchair, leg braces, a scooter, cane, or crutches. It doesn't go away. The cast of Disneyland is trained to go above and beyond to create the experience for everybody, regardless of ability. Whenever we needed assistance, they were always there to help. It was never a burden. Never. They showed compassion and acceptance and something like that means so much to a mom of a child with special needs. I'm not sure I can really articulate it without crying all over my laptop. 

All I can say is that the magic is still there, with or without a wheelchair, and the memories mean more than anyone at Disneyland will ever know.

Life made.

(Cross posting on Momma Candy.)

Christian's First Week of School

Christian started kindergarten on Monday at a new school! And it just so happens that big brother went to this school, too.

Off he goes!

And this is what he looked like when I  picked him up. Tired!

This is his sensory wall at school. He really liked it! One of the squares has bubble wrap on it and I hear he really liked it and used his pointer finger to pop the bubbles.

Here he is in the kindergarten classroom with his aid.

And here he is this morning off to finish up his first week. He was so tired this morning.

The first day of school I had planned to stay with him all day. But by the time we got to lunch it seemed like everyone knew what to do, including Christian. I think it's important they have their own time with him so they can get to know him without my interference. They have to create a bond with him and if I'm always jumping in, it's hard to make that happen.

When I went to leave I asked him if he was ready and he was so vocal about it. Probably saying - Can you leave already? Nobody else has their mom here!

We're all doing well with it. The first couple days I felt like it was such a long day away from me with a full day in kindergarten. I would think throughout the day - I wonder what Christian's doing right now.

For the first day I made a little book about Christian talking about what his favorite things were, about his wheelchair, about his button, and about things he does. The teacher let me read it to the kids so they could learn more about Christian. I didn't want them to be afraid of him. The preschool kids kind of just blindly accept him but as the kids get older they have more questions and fears. So the book helped relate Christian to them but also explain why he does some of the things he does. I'll post the pages soon.

 So it sounds like Christian is really liking school and I can't believe how big he is! Oh yeah, and it has been so much easier getting him back and forth to school! I used to have to load him and Lola up every morning and drive about twenty-five minutes to his school. Then park and unload Christian's wheelchair, Christian, and his grumpy little sister who was still in jammies half the time. We'd have to trudge through the office, the school courtyard, and all the way to the back of the school where his classroom was. Then we had to turn around and do the whole thing again two hours later. 

Now his school is five minutes away. I can hear the morning announcements from my front door. And because I was having trouble finding parking when school pick up and drop off purgatory was taking place, I now just pull up to the side of the school and his awesome aid helps me unload and load the wheelchair into my van and then she takes him into his class! It has been a dream!!! It's the little things that make life easier!

I'm really excited about this year and still in disbelief that he is in kindergarten.

Happy Birthday, Christian!

Christian is starting school tomorrow! 

I'm so excited about it for him, but also a little nervous because he'll be in full day Kindergarten. He'll have two classrooms - a typical kindergarten classroom and a special needs classroom, kind of like a therapy room. Wait until I show you guys his therapy corner!

We celebrated Christian's birthday by going to Disneyland! I'm going to write up an entire separate post about how handicap accessible Disneyland is and why it's THE BEST place to take your child if they have special needs or if they rock a wheelchair.

But first, let's just acknowledge that Christian turned FIVE!!!

On his actual birthday we had some cake, cupcakes and candles to celebrate.

The best part? Christian got to actually eat some of his cake. He had tastes of frosting and the frosting actually had crumbs of cake in it. There were times when he used to just let it sit on his tongue if something wasn't thin enough to move to the back of his throat on its own. 

But this frosting was a little thick, being peanut butter frosting and all. 

So I pressed a little into his tongue with a fork and let him figure out what to do with it. If anything, I could always go back and rinse it with water or wipe it out.

I turned the other way to serve the rest of the cake.

I turn back to Christian and do you know this kid cleared the whole thing!!!!

And so he gets more!!!

But only a little bit at a time. He'll let us know when he can't handle it so I just follow his lead. Apparently, he was ready to handle some peanut butter frosting with chocolate cake crumbs. 

And just for good measure, we celebrated again with frosting and sprinkles in speech therapy the next day.

Spoiled kid.

Happy Birthday, Christian!

And, just in case I didn't post the pictures from his celebration of life earlier July, here they are! We took him to pizza where he rode his very first carousel. 

The buttons at these pizza places where they have those ticket games are perfect! They're just like talker buttons. 

Go Christian! 

Frazier Water Protocol Update: I love this program!

July has been such a busy month!

 

I knew it would be. Between July and the beginning of August we have two birthdays and two kids going back to school. And one of those kids is Christian!

 

But before he starts Kindergarten, he has a birthday coming up. I'll let you all in on his birthday trip we're heading out for tomorrow in a later post. For now, I wanted to update on the Frazier Water Protocol we started with him about six weeks ago.

 

I love this program!

 

About three times a day I clean his mouth with a toothbrush. Teeth, inside of cheeks, roof of mouth, tongue, and lips. Then I follow it up with about 3mL of water by mouth with a tiny syringe. The whole thing is supposed to promote better oral hygiene and stronger swallowing, thus reducing the risk for aspiration and/or pneumonia.

 

And it does!

 

Christian's mouth was starting to become a problem. I felt like brushing his teeth alone was not helping and with him being a mouth breather with his mouth constantly open, his mouth would dry up. Saliva would actually dry over his teeth and it was like I needed a power washer to get it off! I was beginning to wonder if this was going to be a problem because what I was doing didn't seem to be helping.

 

Enter Frazier Water Protocol.

 

There was a difference in his mouth within the first few days.

 

This is what his mouth looked like before. A mess.

 

 

Pretty, right?

 

Very dry and you can hardly see his teeth. This was what it looked like every morning.

 

This is after we started the program.

 

 

 

He has teeth!

 

Over the years Christian's gums started to engulf his teeth. The roof of his mouth is different than children his age and his teeth kind of sit in his gums. When his first top teeth came in, he had a big gap between them. The gap disappeared when his gums enlarged. This, I'm assuming, is because he doesn't eat by mouth and because his mouth is always open so every thing dries over.

 

But after six weeks of the water program, look who's back!

 

 

It's the gap!

 

 

His mouth looks so much better! But I have to do the water program AT LEAST three times a day. If I do it less, which has happened because he'll fall asleep early or something, I can see the difference.

 

Not only has the program vastly improved his oral health, but his swallow is so much faster! He used to pool all of the liquid at the back of his throat and give one big swallow. But now he will swallow right away. And fast. He has also shown more interest in tasting food and he is clearly more motivated with food. His favorite is a chocolate peanut butter smoothie because, of course, it is.

 

Here he is in action with his water:

Frazier Water Protocol from Shauna Quintero on Vimeo.

 

 

 

If he swallows better, his risk of aspiration is lower. He has never aspirated before that we know of but as his anatomy grows and changes, it's always a possibility. So we're working on strengthening that swallow reflex as he grows.

 

 

I have our fabulous speech therapist, Randi, to thank for suggesting this program. It has been amazing!

 

 

Four years later.

I'm sitting at the table with Christian by my side like we've done every day this summer. I drink my coffee and he drinks his water and a little bit of breakfast smoothie. He grunts at me when he's ready for more. He likes his food. And I like my coffee.

This morning with Momma's coffee and our chocolate banana smoothie, chosen by Christian with a "clear yes," is so normal and average. So beautifully normal and average.

This morning is a little different, though. Four years ago today Christian survived. Our little eleven month old boy left our house and this world and sent back a new boy in his place. I look back on that time and wonder how I even survived it. He was full of tubes and scars. He didn't even seem to know who I was. In fact, I remember thinking that exact thought - He doesn't even know who I am.

But over the years the hard became a little less hard and even passed as easy. The sad subsided and the joy arose. Now I don't cry for what we have lost, what Christian has lost. I cry for all we have gained. I cry for that scared, pregnant mom spending the night in a frigid hospital wishing and praying to wake up from a nightmare. I wish I could tell her it will be okay. He will know you again. He will smile again. Just hold on tight.

He is such a gift. I can't even begin to articulate my feelings about this. There is a clarity that comes with living on gifted time. It's almost like a secret to life that is so excruciatingly beautiful but you don't get to experience it without feeling immense pain and heartache. It's a trade off.

If I could talk to the me four years ago I would tell her to hold her baby. Really hold him for the baby that he is. I remember reading advice about parenting children with special needs and one thing that always stuck out was the advice to enjoy my child. At the time I thought - Enjoy my child?! Enjoy what?! His constant crying? His laying there doing nothing? How do I enjoy this?!

Now I look back at these pictures of his babyhood and just look at him. I want to hold that little baby with his purple trache speaking valve right now!

Over the last four years Christian wasn't the only one who had to learn new things.

I had to learn, too. I had to learn that his "doing things" would look very different than any other child, ever. And I needed to learn how to recognize that, rejoice in it, and speak his language so I could celebrate him for the boy that he is. I would have told the me four years ago not to get hung up on fixing him, but to focus on making him happy. I would have told the me four years ago, but the me four years ago wouldn't have listened then. I wanted to fix him.

But I learned. He learned to breath and to sleep and to make sounds. I learned to accept him for the perfect baby that he is.

I learned to trust my instincts and that he is still my son and I am still his mother. I don't need permission to give him Teddy Grahams in his blend. I don't need permission to rough house with him. No medical professional has ever said anything to me about my choice but other parents have questioned me. Did someone tell you this was alright? How did you know you could give that to him? Because I'm his mother. And I say it's okay.

I learned that my son isn't forever a medical patient and he certainly isn't a medical patient in this house. He's a kid. His medical stuff is just the way he is parented. I give Lola Cheerios with honey for breakfast. I give Christian a blend through his tube. It's parenting, not a medical procedure. He doesn't need a doctor or a nurse for that. Same parenting, different look.

Christian has been our greatest teacher. When we went through the hardest parts, with his non-stop crying for hours, I would wonder to God - Why did you spare him? To torture him? Will he ever be happy?

I think I know why Christian made it. He teaches us every day. He teaches us about this big, great love that's painful and stunning all at once. He teaches us patience and acceptance and he humbles us. He teaches us forgiveness. He teaches us strength and the will to not only survive but to thrive. He teaches us to appreciate everything and take nothing for granted. Even a little half smile.

He teaches about choosing happiness. He teaches us about not feeling sorry for ourselves. He teaches us perseverance. Because if Christian can be content in living his life every day the way it is, certainly I can, too.

I love that boy for everything he is. I don't think about the future as much as I probably should. But I think about now and what we're doing today. Finally registering him for kindergarten. His fifth birthday coming up. I'm focusing on now.

Christian is still showing us miracles all the time. Just when we think he's done, he throws us another one.

But my greatest joy four years later? Christian likes dinosaurs and Thomas. He likes chocolate peanut butter smoothies. He knows his family. He knows his Momma.

And, I finally believe that Christian is happy.

"He is still going to be your perfect baby."

I started the day going through the motions of Stay-At-Home-Mom-Land.

There was no more creamer. Or milk. So I put Cool Whip in my coffee. Yes, I said Cool Whip. Don't judge me.

I wore yoga pants.

It was grand.

And then just like any other morning I opened up my lap top. I noticed a YouTube video that had been shared a few times by other friends and I hadn't yet opened it. I decided to open it this morning with my Cool Whip coffee in hand.

I heard the pretty singing and saw the faces of parents who have children with special needs. They held up words.  They were powerful words. Words about hope. Words that served as advice on diagnosis day.

I guess what struck me was that this wasn't a sad video. This wasn't a woe-is-me video. This was a here we are and this is what you should know going forward video.

But then I saw a friend of mine. She was holding up words.

They read...

"He is still going to be your perfect baby."

I sobbed. Like, ugly cry sobbed. And when I tried to retell it to Manny later on, I almost couldn't get through the sentence.

I have so many thoughts and feelings about that sentence but I'll elaborate later. For now I can sum it up in three words.

He totally is.

I gave Christian a bath today. Every time I give him a bath, if we're not a hurry, I take his right hand and make him splash the water. Then I ask him to splash. He never does. I always chalk it up to him being so relaxed in one of his favorite places - a warm bath.

But today I splashed his right hand while I had him sitting up in the bath. Then, like always, I asked him to splash. I said, "Now, you do it." And do you know his little right hand started to buzz. He was trying to raise it out of the bath water and open his hand. He did it several times after I asked him if he wanted to splash. I had waited for him to do this for years now. YEARS. At first I thought maybe I willed him to do it. But he was ready to try and splash on his own.

So then Lola got in the water with him and I told him we should splash her. So I had both my feet in the tub while sitting on the edge, holding Christian up in the water. I grabbed both his arms and helped him splash his sister. He had the biggest smile! But then Lola started splashing back. Normally I would tell her to stop because her splashes drench the bathroom but she really wasn't hurting him so I let her continue. We kept on splashing back. He just smiled and smiled, I was laughing, and Lola was giggling.

I looked down at my now soaked yoga pants and said, "You guys got water on me!"

To that Lola responded while giggling, "Sorry we got you wet, Mom!"

Do you know that I wanted to cry when she said that? Sorry, WE got you wet, Mom! I don't really know how to articulate my feelings about it. It was all so normal and perfect. They, as brother and sister, were playing and got Mom's yoga pants all wet. It was both so mundane and so extraordinary at the same time.

I highly suggest you watch this video. And if you do it with a cup of Cool Whip coffee I promise not to judge you.