A Dream Come True

Something happened last weekend that I have thought about often, but I never imagined that it would happen this soon. I actually didn't tell too many people about it because I was afraid that plans would fall through. Most of you probably know that when Emmett was diagnosed with Xia-Gibbs Syndrome in November 2014, we were told that he was only the 5th known case in the world. It was a very strange feeling having a child with such a rare diagnosis. Over the past 2 1/2 years, several more children have been diagnosed and there are now around 40 known cases. It has been amazing connecting with many of these families online, even though we are spread out all over the world.
A few months ago, our Facebook group decided that it was time for the "Xia-Gibbs families" to meet face-to-face. We even coordinated with the doctors that discovered the gene mutation, so that they could meet with the families, as well. The first ever Xia-Gibbs Syndrome Symposium finally happened last weekend in Houston, Texas and even though it was a 16 hour drive, it was totally worth it!
The moment we arrived at the hotel, I began to see familiar faces of people that I felt like I already knew. I recognized their children and I knew most of them by name. I was hugging people that I had never even met and I didn't think a thing about it! These people totally "get it". Never once did I have to explain or apologize for Emmett. I didn't have to explain why he wasn't talking or why he had to have his food chopped up in tiny pieces. I didn't have to tell them why he walks a little differently or why he falls easily. I didn't have to hold him back, if he wanted to grab someone's hand or if he got in their personal space. I didn't have to try to keep him quiet, if he started making one of his repetitive sounds. Each and every person had an understanding that I had never fully experienced before.
Don't get me wrong, we have lots of wonderful people in our lives who love Emmett unconditionally, but there is nothing quite like meeting people who have children with the same diagnosis. Almost every parent I met told me that Emmett reminded them of their child in some way: his looks, his walk, his tight hugs, and the way he claps his hands (just to name a few).
I felt the same way about the other kids. I could see a bit of Emmett in all of them and sharing stories with their parents made it very clear that our lives have many parallels.
One of the best things about the children with Xia-Gibbs Syndrome is their love for people. Many of them don't know a stranger and will try to make friends with anyone. Others are a little less social, but are very attached to certain people in their lives and find comfort being close to them. They are some of the most loving, pure hearted people you will ever meet and I saw this over and over again. As parents, we got to enjoy not only the love of our own children, but the love of the other children, as well. There were also several siblings and caregivers in attendance and they were also very kind and understanding.
Our first evening was spent by the pool enjoying a nice meal and getting acquainted. The next day was the official meeting with several doctors from Baylor College of Medicine, including Dr. Fan Xia and Dr. Richard Gibbs. The first thing we learned was that most of us had been pronouncing Xia completely wrong, which was kind of funny! Come to find out, it is pronounced: "Sha" not "Zee-uh". (In case you were wondering!) They also shared many things about genetics and the mutation, answered questions, and discussed some of the research they are working on. All of the doctors and researchers were very sincere and explained things in such a way that we could understand. They also spent some time with our kids and tried to learn more about them as people and not just subjects of a case study. After lunch, the parents had some time to share our experiences, discuss some concerns, and shed a few tears. The meeting ended just before dinner time and the weekend continued with more time just hanging out and getting to know everyone better.
Another great thing about the weekend was watching friendships form between the siblings that were able to attend. Emmett's big brother, Corbin, made a new friend who may very well be a friend for life. They spent the entire weekend playing, swimming, and talking about Minecraft and Pokemon! (which I know nothing about, so I'm sure Corbin enjoyed talking to someone who does) They are pretty young right now, but as they grow older, it will be nice to have a friend who truly understands what it is like having a sibling with Xia-Gibbs Syndrome.
As I sit here typing, I still can't believe that this finally happened. Although not everyone was able to make it this time, it was incredible getting to know so many people and I hope to meet many more in the future. I truly feel like we are a family. No matter how big our group gets, having a community of people who understand what we are going through is truly priceless. Our journey with Emmett is not always an easy one, but it's nice to know that we are not alone. I am so thankful for our "Xia-Gibbs Family" and can't imagine this journey without them.

Finally in Houston and out of the car!

Enjoying the sunshine!

Geography lesson for breakfast!

One of Emmett's new friends

Corbin with his new buddy

Playin' in the pool

All Emmett Wants for Christmas...

I've always loved Christmas and have many fond memories of Christmas as a child and I hope that our boys will too. Most children get very excited about Christmas and can hardly wait for the big day. Emmett's big brother, Corbin, is no exception and enjoys everything about Christmas. He could hardly wait to put up the tree and eagerly opens a window of our Advent calendar every day. He knows the true meaning of Christmas, but like most 6-year-old boys, he also has a list of toys that he'd like to find under the tree on Christmas morning.
Unlike his brother, it's hard to say what Emmett thinks about Christmas. I know that he likes being with family and seeing the people that he loves, but it's hard to answer the question: "what would Emmett like for Christmas?" For those of you who don't know him very well, he isn't highly motivated by toys. In fact, there are only a few toys that will keep his attention for more than just a few seconds. When he was younger, I would come up with a list of things that I thought he might like or that would help him with his fine motor skills, but the older he gets, the harder it is to come up with a list. He does like things with music and lights and will sometimes show a little interest, but he'd still rather be in someone's arms or crinkling wrapping paper, than playing with a toy.
Emmett also shows very little interest in television or movies. He will occasionally turn to the television when he hears a song, but only for a few seconds. This isn't necessarily a bad thing, but a new DVD would definitely not be on his wish list!
Emmett may not care much for television or toys, but there are a few things he does like. One of his favorite things and biggest motivators is food. He especially likes puffcorn, yogurt, and fruit pouches, but he will eat just about anything you put in front of him. If he is fussy, he is likely ready for something to eat or drink. If you want him to do something, just pull out his favorite snack and you will be amazed at what he can do.
Another one of his favorite things is people. He doesn't know a stranger and will go up to anyone and grab their hand. Even though he doesn't talk, you can definitely tell when he sees a familiar face and he hates it when anyone says goodbye. He also gives great hugs and loves to be tickled.
Emmett's Christmas list may not look like a typical 4-year-old's list, but if he could tell us what he wants, I believe that his list would look something like this:
Lots of yummy snacks
Hugs and kisses
Tickles and snuggles
Spending time with my favorite people

Emmett will DEFINITELY be getting everything on his list this year!

Merry Christmas and don't forget that the greatest gift that you can give anyone is love!

Checking out the first snow of the season

Emmett and big brother, Corbin

Embracing Movement

Since I started the training for the Anat Baniel Method (ABM), earlier this year, it has been a little trickier to find time to write my blog. I am just a little over halfway through my training and it has been amazing. I am beginning to understand the work more fully and I'm starting to feel more comfortable working with Emmett.

Although I am still learning, I find myself experimenting a lot with the different techniques, especially if we have some quiet time where we are just waiting for an appointment. I also really enjoy working on Emmett, if he happens to fall asleep in my arms. On those rare occasions, I feel like I can really explore how he moves or his potential to move and it is very interesting and mind opening.

I also find myself simply following his spine with my fingers or gently lifting an arm or a leg, when he is sitting on my lap. At this point, I'm not quite sure how all of the pieces fit together, but I am seeing small changes in Emmett and I can't help but think that what I am learning and doing is helping in this process.

If you ever have the opportunity to watch an ABM lesson or to participate in one, it is hard to believe that such slow, gentle movements can impact the way that someone moves and thinks in such a profound way. I never realized how much movement and the brain are connected until we found ABM 2 1/2 years ago. Emmett went from a toddler who could barely roll or sit up on his own, to a child who can crawl, cruise, and walk.  When he started ABM, Emmett had very limited communication skills and seemed a bit disconnected from the world, but he is now communicating with pictures and is engaging with people like he never has before.

Several people have asked me if I think that Emmett would be where he is now without ABM. I do believe that he would be walking or at least close to it, but I don't believe that the quality of his movement or his connection with the world would be nearly as profound. Sometimes I like to go back and look at videos of Emmett when he was much younger or even when he first started walking and it's hard to believe that I'm looking at the same child. He has always had a sweet spirit and a love for people, but it's almost like someone flipped a switch and his mind and body just "woke up."

I realize that ABM is not going to magically make Emmett's genetic mutation disappear, but I do truly believe that it is helping him reach his full potential. I have seen so many subtle, but significant changes in him over the past 2 1/2 years and I can't wait to see what exciting changes are to come.

Emmett is my inspiration and the reason that I decided to write this blog and become an Anat Baniel Method Practitioner. Just a few weeks ago, I decided that the name of my business should closely relate to my inspiration, so starting in late spring 2017, Embracing Movement will officially open for business.

Embracing Emmett, Embracing Movement!

Catching Up

The last few months have gone by so quickly and even though I've had good intentions, I haven't taken the time to write in a while. Between Emmett's new school schedule, Corbin being home all summer, and my ABM training, we have definitely been keeping busy!

In case you missed my last blog, Emmett is currently on a very restrictive diet and we have cut out many of the foods that he used to eat every day. Thankfully, he has adjusted very well. Although it requires lots of label reading and planning ahead, it has been a much easier transition than I anticipated. I still feel a little guilty eating "real" food in front of him, but he doesn't seem to mind and he actually has more variety in his diet because I've had to get more creative.

Emmett is also adjusting well to his new school. Everyone loves him there and he never cries when I take him, so that is definitely a good sign. They send me pictures or videos to show me what he has been up to and they have an open door policy. Corbin has even gotten to stay a few times as a peer. Although Emmett is still nonverbal, they are teaching him to communicate with picture cards. We have tried this in the past, but he finally seems to be making the connection. We are also seeing great improvements in his fine motor skills. He can pull the picture cards out of his Velcro communication book very easily now, which would have been very hard for him, just a few months ago. He also just recently started drinking from his sippy cup with very little help and is getting much better at using eating utensils. While I was away at my last training segment, I received a video of Emmett pulling Cheerios off of a pipe cleaner and it totally made my day! Although these may seem like little things, they are huge for Emmett and I'm so excited to see him making progress.

Emmett isn't the only one learning new things these days! My ABM training is well on its way and I am already over halfway through Segment 4 of 10. Although I am still learning, I have been able to practice on a handful of people and have started working with Emmett a little. He has also had several ABM lessons with our practitioners this summer. It has been a great experience to watch them work with Emmett and it helps me understand the work even more.

As l look back on this summer, I'd say that it has been a pretty good one. It may not have been a typical "lazy summer", but we still managed to have some fun along the way. Corbin was able to attend a few VBS programs and a one-day sibling camp where Emmett does Hippotherapy. He also got to spend a little extra quality time with mommy, since Emmett was in school more. Both boys have really enjoyed playing outside and swimming. Emmett especially likes walking around in our hot tub and it is the perfect size for him. We keep it cooler in the summer, so the boys basically have their own personal pool. Emmett has also really enjoyed his newfound freedom. He couldn't walk unassisted last summer, so it has been a like whole new world for him. We were also able to squeeze in a mini family vacation at a Jellystone Park near one of our ABM practitioners. We have to travel 2 hours for ABM lessons, so it was a great way to sneak in some family time, while getting lessons for Emmett.

Well, that about sums things up for now. It has been a crazy summer, but it has also been an awesome one. Stayed tuned for more updates about our sweet, little man.

Despite his new diet, Emmett still loves to eat!

Enjoying some outdoor time at school

You Want Me to Eat What?

Over the past few months, Emmett has been doing better with a variety of foods. He has always liked to eat, but having low muscle tone and mild dysphagia makes it difficult for him to eat tougher meats, harder fruits and vegetables, and some crunchy foods. It wasn't until earlier this year, that we could actually order him a meal at a restaurant. However, things just got a little more complicated.

A while back, Emmett was tested for micronutrient deficiencies. The results from that led to a few more tests. His most recent test was for food intolerances and we just got the results. I had a feeling that they found something because the doctor wanted me to come in for a consult. Let's face it, no one ever gets called in for a consult for no reason! Unfortunately, we now have to cut several things out of his diet, including: gluten, dairy, wheat, soy, garlic, almonds, and eggs. His doctor explained that these foods may not be allowing important nutrients to absorb properly and may also be causing digestive issues and hindering his overall development.

As I looked over the chart, I was a bit overwhelmed and all I could think was: what is this kid going to eat? He loves grilled cheese sandwiches, quesadillas, graham crackers, egg salad, and cottage cheese. He drinks thickened almond milk every day.

I was thrilled to hear that he can still have yogurt because most of his other favorite foods have to be eliminated, at least for now. His doctor is hopeful that we will be able to reintroduce them slowly, but in the meantime, he can have soft meats, beans, rice, oats, corn, and most fruits and vegetables. At least we have options. It may require a little more money, research, and creativity, but Emmett will not starve!

On my way home from the appointment I stopped at the store and picked up a few things for Emmett to try. The gluten-free graham crackers and dairy-free cheese both passed the taste test, so that made me feel a little better.

However, I'm not looking forward to our next restaurant visit because if he sees a gooey, buttery, grilled cheese sandwich across the table and I hand him some dairy-free cheese and gluten-free crackers, there's a good chance that it's going to get ugly!

"Are you sure about this new diet, Mom?"

Emmett does try to eat sand, so gluten-free might not be so bad, after all.

Nothing Ventured, Nothing Gained

Many of you probably know that Emmett is currently nonverbal. I recently heard the term "preverbal", which I like a little better, but either way- it is, what it is. He does babble and make a variety of sounds. We have even named a couple of them: his "angry dolphin" and "Chewbacca whine" are definitely unique. He also has an awesome giggle.

At this point, we don't know for sure if he will ever talk, but we are currently trying to help him communicate. We haven't had much luck teaching him sign language, but he does have a few very simplified signs. We have also tried using pictures for communication, but we've had limited success with that, as well.

In an attempt to help him with his communication skills, he will be starting a new therapy soon, called ABA (applied behavior analysis). He will have a one-on-one therapist for several hours a day, five days a week. It will be play-based and customized for him by a speech pathologist. They will primarily focus on functional communication, but they will work with him in all areas.

Emmett has had many different therapies and has benefited from all of them in different ways. This will be a new one for us and it will be strange because it is a full-time program and it is 45 minutes away, but we are optimistic that it will help.

It is going to be an interesting process because what I am training in: the Anat Baniel Method (ABM) and ABA are very different and may "conflict" a bit in the way that they are approached. However, many of Emmett's other therapies appeared to "conflict" with ABM at first, but once I explained the principles, his therapists understood the basic concepts and did their best to integrate what I taught them. My hope is that I can do the same thing with ABA, so his therapists can combine the best of both worlds. If for some reason we decide that ABA isn't a "good fit", we can move on, but if it does help him, we will have no regrets! 

Two years ago, when we first tried ABM, we went in with the same attitude. And now, I am training to become a practitioner and I can't even imagine where Emmett would be without it. There are so many great therapies and techniques out there. What works for one child, may not work for another, but we are willing to try just about anything to help Emmett. Nothing ventured, nothing gained!

Back to Reality-Then, Back to School

It has been almost 3 weeks since I returned from my first segment of training for the Anat Baniel Method. I must admit, it was hard to jump back into the daily grind after being away for 10 days. We had class every day, so it was easy to forget what day of the week it was and the weather was beautiful.

When I returned, it was time to get back to the reality of housework, preschool and therapy appointments. Both boys had Easter parties that week and Corbin's spring break started just 4 days after I got home, so I definitely didn't get to do as much "homework" as I would have liked to right away. We are supposed to do movement lessons as part of our homework, which require you to lie on the floor and do a variety of slow movements. They are most effective with few distractions, so that you can really pay attention to how you are moving and how your body feels. However, having a 5 1/2 year old run circles around you, while a 3 1/2 year old is either grabbing your hand or climbing on you, is not exactly the ideal scenario. Next week we will all "go back to school" and I'm definitely ready to start my first online segment with fewer "distractions".

My first training segment was awesome and I met many amazing people. One of my favorite parts was hearing all of the stories from my fellow classmates about how they found ABM or how their children have been transformed by ABM. I've obviously seen big changes in Emmett too or I wouldn't be in the training. After doing several movement lessons myself, I have an even better understanding of how powerful this work can be.

Although I am just "a baby" in the ABM profession, I am already learning how to help others- one baby step at a time. I've even started practicing the few things that I have learned on family and friends. It will be a while before I fully understand what I am doing, but I guess that is how it is anytime you try something new.

Even though I was a little nervous to start this new adventure, I'm happy to say that it has been incredible, so far, and I know that it is only going to get better, especially when I can help Emmett in a way I never have before.