Friday, December 23, 2016

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

Monday, November 7, 2016

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!

Saturday, August 6, 2016

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




Thursday, June 2, 2016

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.


Tuesday, May 3, 2016

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!

















Saturday, April 9, 2016

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.



Thursday, March 3, 2016

The Final Countdown

It's hard to believe that in just over a week, I will begin my journey to become an Anat Baniel Method practitioner. I'm very excited, but I feel like I have a million things to do!
There are a lot of logistics to work out with two different preschool schedules, therapy appointments, and my husband's work schedule, but thankfully, we have family and friends that are willing to help. I will be out-of-state for ten days, which is a pretty big deal, when you're the primary caregiver, cook, and taxi driver.
I have completed the master calendar and am working on several pages of instructions, tips, and phone numbers for the variety of people who will be helping. I have stocked up on Emmett's favorite foods and the diaper supply is secure.
I didn't think much about Emmett's daily routine, until I started typing everything out. There are a lot of little details that are just everyday life for us. His medical needs are relatively minimal, so he doesn't require a nurse to take care of him, but he does have a somewhat limited diet and we have to thicken his drinks, so he doesn't aspirate. It isn't rocket science, but it is important for everyone else to know, especially since he is nonverbal and can't easily communicate. There are also the little things, like what to pack for school, when the boys have a snack, and where to find the band aids! I know that the world will not come to an end if Emmett doesn't wear green on St. Patrick's Day or if Corbin forgets to do his homework, but I just want everything to run as smoothly as possible.
This is the longest that I have ever been away and it will definitely be a challenge for everyone, but I know that my boys will be in good hands and that it will be totally worth it.
I may not have prepared the make ahead slow cooker meals that I had intended to, but my husband is an excellent cook, so I know that my family won't starve. I didn't even plan the boys' outfits for the week, but I'm pretty sure that they won't go to school naked! Will everything be exactly how I would have done it? Of course not, but as long as my boys are happy and safe, that's all that really matters.
Even though I know that I will miss my family, I must admit that I am looking forward to waking up to an alarm and not the sound of a screaming child. And being able to go to the bathroom without having an escort will be a luxury. However, what I am looking forward to the most is learning how I can help Emmett and many others, through the Anat Baniel Method. This is going to be an amazing adventure and I can't wait to share it with everyone.

 I'm sure going to miss these little guys and their daddy too!





Sunday, February 14, 2016

God's Perfect Plan

I really enjoy reading blogs, especially those about children with special needs. A few weeks ago I read a blog that was titled: Bible Verses for Special Needs Moms. I could really relate to what was being said and one of the verses even hangs on Emmett's bedroom wall. 
One verse that the blogger mentioned was one that I had read before, but had never really thought much about. The Bible is cool that way, you never know what verse will stand out on any given day.
This is the verse:
As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."
- John 9:1-3
Although we are all sinners, Emmett's syndrome is not a punishment for something we did, as his parents. He was created that way by God and I see the glory of God's creation in Emmett everyday. In the chapter mentioned above, Jesus went on to heal the blind man to display the works of God, but not every person that is sick or impaired will be healed.
Even if Emmett is never "healed", there are many other ways that the works of God can be displayed in him or through him. When I read John 9:1-3, it made me think of all the ways that Emmett has already blessed so many people, just by being himself. It also made me think of how having Emmett has given us the opportunity to help other people. Whether it be by giving advice to other parents in a similar situation or by helping other children when I start my new career, many good things can happen as a result of God's perfect plan.
Even though we are only three and a half years into this journey, I am beginning to understand why God gave us this amazing boy and I am so thankful He did.


Thursday, January 7, 2016

Rare, but Not Alone

It has been just over a year since we received Emmett's diagnosis. When we first heard of Xia-Gibbs Syndrome, there were only 4 other known cases in the world and very little information about it. I would find myself googling it every couple of weeks, in hopes of finding just one other family who could relate. About three months later, I received an email from a mother of another child with Xia-Gibbs Syndrome from halfway around the world. I was so excited! We quickly exchanged emails about our children and learned that they were very similar, not only in their delays and medical background, but also in personality and appearance. A few days later, I received another email from a family here in the U.S. This trend continued and over the past 10 months, we have been connected with 13 other families from all over the U.S. and Europe. The children range in age from 2 to 18 years old. I have never met a single one of them, but I am so thankful that we have found each other.
Our intimate, little group shares the good times and the bad. We ask each other questions and give advice. Even though we still have a lot of questions about the future of our children, it is nice to know that we are not alone in this journey.
Although I have connected with many people who have children with special needs and can relate to them in many ways, I felt such a sense of relief when I started to connect with other "Xia-Gibbs families". All of the children have a variety of medical concerns, some of which may not be related to Xia-Gibbs Syndrome, but it has been interesting to compare similarities.
I want to respect the privacy of all of them, so I won't go into great detail, but I will share a few general observations:
  • Xia-Gibbs Syndrome causes hypotonia (low muscle tone) and developmental delays. Low muscle tone can affect fine and gross motor skills, speech development, eating, and breathing!
  • Most of the children have or have had obstructive sleep apnea.
  • Many of them have feeding issues of some kind. They have difficulty eating tough meats and hard fruits and vegetables. However, most of them love food, despite their limitations, and tend to stuff too much in their mouths. Some of them choke on thin liquids and must drink thickened drinks.
  • Some are talking, some are not. The ones who are talking have difficulty with expressive language. Most of the children tend to get frustrated when trying to communicate, whether they can talk or not.
  • Most of the children love music and are sensory seeking. They like tight hugs, being in water, feeling different textures, and tearing paper.
  • Perhaps the most interesting thing that these beautiful children have in common is their love for people. They don't know a stranger and they love being close to others. Many of them hate to be left alone in a room.
These are simply observations that I have made and by no means am I claiming that they are medical fact. I am sure that as more and more children are diagnosed, we will continue to learn more about Xia-Gibbs Syndrome. The challenges we face can be difficult, but it is nice knowing that we are not alone. I hope to eventually meet these families face-to-face, but in the meantime, I am thankful that we are able to connect through modern technology.