Photos Too Cute Not to Share

We took our family on vacation to Disney World December 1-9. My oldest son and his wife work at Disney World through the college program. My son is a skipper on the Jungle Cruise and his wife works at the World of Disney store in Downtown Disney. If you'd like to read more about our trip or see other photos you can check out my blog http://www.rebeccatalleywrites.blogspot.com/.

My youngest son loved Disney World. Everything was so exciting. He couldn't ride on some of the rides, but he had fun on lots of other rides. It was great watching his reaction to everything and seeing Disney World through his eyes. I've included some of my favorite photos of him. I hope you enjoy them.

Gratitude for my Son

I am very thankful for my son. I am very thankful that he's been so healthy and that he's doing so well. I feel very blessed.

When he was born, he had to spend time in the NICU because he wasn't getting enough oxygen. He was actually air-lifted to another hospital because the doctors assumed he had a heart defect. About 50% of those born with Down syndrome have a heart defect. I remember being so scared and wondering if he'd even survive the flight.

Thankfully, he did, and he didn't have the heart defect. He didn't have anything wrong with his lungs. He didn't have any problems with his intestines. He was able to suck and he was able to breathe, suck, and swallow at the same time. I'd been told he wouldn't be able to nurse, but I was determined to nurse him. I ended up nursing him for almost two years--even through an extremely painful bout with thrush that had settled in my milk ducts.

We never learned why he needed the extra oxygen. They'd suspected newborn pneumonia, but he didn't have that. I believe it was because he was induced too early. I hadn't kept good track of dates so the doctor relied on the ultrasound to pinpoint his due date. He was 8lbs 6 oz when he was born, most of my babies were over 9 lbs and I even had one that was over 10 lbs, which is a good size. I think his size threw off the ultrasound dates. Plus, the induction with him took so much longer than any of my others, induced or natural, I'm pretty sure he just wasn't ready to be born.

Four years later, I'm just so thankful it all turned out so well. Yes, he has some delays, but that's okay. He's healthy, he's happy, and he's surrounded by a family that loves him. Today, I am so grateful he was born into my family. 

Memory Skills

Shortly after my son was born, I researched Down syndrome as much as I could. I bought and read books, read articles, met people connected to DS, asked questions, and posted on DS boards on online sites. I wanted to know all I could as fast as I could. Of course, I've since learned that all that book reading and studying was good, but it could never compensate for, nor replace, experience.


One of the things I read while researching was that people with DS have memory issues. I've been interested to see how my son does with memory skills. I was pleasantly surprised to see him be able to match picture cards to pictures in a book while at his speech therapy session last week. Wanting to help him with this new skill, I decided to purchase a game from Walmart called Memory.  I've been using it to help him with him memory and I've been very pleased to watch him correctly match cards from this game. I've done it a couple of different ways and with each match we go over the sign, the name, and the sound. He's been consistently trying to make more sounds and he's done it much more spontaneously. Not only is he having fun with the game, he's improving his memory. I'd expected, from my research, that he wouldn't have much memory retention, but I've learned from experience that at this point he actually has a great memory.


Update on speech therapy: last week, and this week, his therapist was quite surprised at his vocalization and willingness to try new sounds so I think we're making progress--yay!

Speech Therapy Progress

My son had his speech therapy session yesterday. Unfortunately, he wasn't feeling well by the time we got to town so he didn't want to participate very much.

I visited with his therapist and asked her what she thought about his progress. She said she was happy with how he's doing and she's seen him improve in his verbal skills. She'd like to see him use even more words and consistently ask for things using either a sign or a word. The therapy sessions have been good for me in that I've become more insistent that he ask for things. As his mom, I almost always know what he wants--I can practically read his mind. In the past, I've let him point to things or take me by the hand to show me what he wants, but now I'm making him ask for it by either signing or by saying a word. So, the positive effect of his therapy is that it's making me more aware of how I interact with him when it comes to communication. Yes, it's easier to just hand him a drink of water, but that doesn't help him learn. Now, I make him give me the sign for a drink. Next, we'll move to the signs for both a drink and the water. Then, hopefully, we'll move to the words.


The therapist read him a book yesterday and he had to match the picture in the book to a picture on a card. At first, he wouldn't cooperate, but by the end of the book he was pointing to the matching cards, which is great progress for him.


I'm glad we've had him in speech therapy. I think it's been good for him and it's taught me a lot. He's learned to work with another adult and he's started to make connections between signs and words.


I've never been a very patient person. When I want something, I want it now. Of course, after having so many kids I've become more patient than I was as a teenager, but I still tend to get impatient. My son has been a great teacher. I have to be patient with him. I have to not stress that things take him longer. I have to be okay with the time it takes for him to learn things. I've had to let go of wanting him to do certain things at certain times and just be thankful for what he does, when he does it. After all, I'm in this for eternity, so a few extra months or years won't make much difference. Besides, learning how to be patient and grateful are things I might not learn any other way.

Occupational Therapy

I took my son in for his occupational therapy evaluation a couple of days ago. When he was an infant, the physical therapist said he didn't need OT so I never thought too much about it. His speech therapist suggested we have him evaluated for OT now that he's older.

I researched OT trying to figure out what it meant, how it helped, what skills it developed. I found that OT is dedicated to helping individuals learn to live in their environment. It helps people learn to feed themselves, dress themselves, use pencils, crayons, scissors, and be able to adapt to their surroundings.

My son has been feeding himself for a couple of years (except, of course, when he doesn't want to eat what I've fixed him). He can dress and undress himself. He loves to find his sister's shoes and wear them. And, his favorite is to wear nothing at all, so I'd say he's much better at undressing himself.

He also draws and colors. I prefer when he does it on paper, but he doesn't limit himself to that, he likes to draw on the walls, floors, doors, even the refrigerator. Sometimes, he even likes to color himself. He can draw lines, circles, squiggles. He likes to use different crayons to add color. In fact, if I give him a pad of paper and some crayons, it'll keep him busy for a long time.

Unfortunately, he can also use scissors as his sister found out when he snipped a rather large piece of hair off her head. Many years ago, after my oldest son cut his sister's hair off (she had to wear a ponytail for almost a year to hide the damage) I have insisted that scissors and preschoolers don't mix.

The OT tested him with things like stacking blocks (he stacks blocks all the time, but his favorite is to stack cans of vegetables at the top of our stairs and then send the cans careening down to the basement), drawing, using scissors, threading beads, picking up beads, and folding paper. He didn't know how to fold the paper, but the other tests he did well. In fact, the OT said he has very strong hands and has amazing skills. She attributed it to having so many older siblings.

The best news is that he didn't qualify for OT. Other than working on better scissor control and folding a paper, he's where he should be and is age-appropriate. I thought he would be, but I was glad to have a professional determine that as well. I'm all for having services he needs, but I want those services to really benefit him, not have services just because he has Down syndrome.

Now, if only we can get him talking more and using the toilet, I'll be a happy mama.

My Mexican Jumping Bean

Yesterday morning I got my son up and fed him a big breakfast. Sometimes, when he's hungry he grinds his teeth. Last week at his speech therapy session he started grinding his teeth and twisting his hair even though he'd had breakfast and a snack. I was puzzled that he was hungry so quickly, but assumed he was just very hungry that morning. I wanted to prevent it this week so we could focus on his session and not his hunger, so I gave him extra food and even brought more for the ride to town.

On our drive to town he was fine, but as soon as we walked into the therapy building, he started to grind his teeth and twist his hair. It dawned on me that he wasn't doing it because he was hungry, it was because he was stressed. I guess the strange environment and an unfamiair person in this setting makes him stressed. I'm hoping he'll get over it as we work more with the therapist. He seemed to warm up by the end of the session so that's a good sign.

The therapist was giving me some advice to help my son use more speech. She encouraged me to let him be a boy. She said I should let him run around, jump on things, and crawl around because that would encourage him to talk. I stared at her. laughing to myself, and wondering if she was for reals. This kid regularly chases, and usually tackles, his older sister, much to her dismay. He jumps on the trampoline, runs around the backyard, and plays on the swingset whenever he can get outside (usually after he's let one of the outside cats into the house to jump up on the stove and eat the hamburger I'm cooking--but that's another story). He jumps all the time--piles up pillows so he can jump into them, jumps on the couch (even though it's against the house rules), and jumps up and down the stairs. In fact, if he's holding hands with people while walking somewhere he "counts" and then on three, he jumps. If you aren't expecting it, he can almost take you down to the ground. He jumps so much he reminds of a Mexican Jumping Bean.

So, yes, I do let him be a boy. He's extremely active. I don't think lack of activity contributes at all to his speech delay. In fact, if activity were tied to his speech, he'd be speaking like a college professor. I know the therapist meant well, she wants his verbal skills to improve, as do I, but sometimes, I have to wonder about what therapists say. I think if she'd stopped to think for a second, she'd have realized that with nine siblings not only is he active, but my entire house is in constant commotion.

Gymnastics

I enrolled my son in a community gymnastics class to help him strengthen his muscles, learn to better follow directions, and to interact with other adults and  kids (I'm a super cool mom, but once in a while I think he gets tired of only playing with me :) ).

He did really well. He isn't the bravest soul so when it came time to walk across the balance beam (which is about 3 inches off the ground) he hung onto his teacher for dear life. He had a great time raising his arms up and down while following the class around the gym. He loved jumping. In fact, he now jumps more than he walks. He likes to count to three and then jump, especially when we're walking somewhere and are trying to hurry.

He wasn't too sure about the rope swing at first, but he seemed to be an expert by the end of the class, grasping onto the rope and then dropping a few feet into a big, cushiony mat.

I think his favorite activity was climbing through the tube. He kept wanting to go back and do that.

He did need some additional instruction and guidance to stay in line and not skip over the other kids so he could keep taking his turn over and over again. He isn't as good at responding to verbal instruction as he is to having someone show him what to do. But, once he gets it, he does pretty well.

Most of all, he's having fun. His little face lights up and he has a huge smile as he participates in this little gymnastics class and that's all I need to tell me he loves it.