Waiting for Words

We were on the road a lot this week. Even more than usual. For the most part, both boys do really well in the car, but there are times that Emmett does not do so well. One of the most difficult things for us right now is the fact that Emmett is nonverbal. I realize that there are many typical 3-year-olds who say very little, but most of those children can communicate there basic needs or at least show others what they need.

We are working on using pictures or sign language, but this is still difficult because Emmett has limited fine motor skills and cognitive delays. I can normally tell what Emmett wants by asking basic questions and waiting for a clap or giggle. However, when he gets really frustrated, he just fusses or lets out a very loud, throaty cry. Whether he is hungry, thirsty, tired, or mad... we hear the same cry and it is worse when he is confined and can't crawl to who or what he wants. As you can imagine, this is great fun when we are driving down the highway with almost 2 hours ahead of us! It is a guessing game and is especially fun if I'm the only parent in the car.

It is hard not to get frustrated and believe me I DO get frustrated, but then I have to remind myself how much more frustrated Emmett must be not being able to express his needs. I'm not completely sure how much Emmett understands, but I do know that he understands quite a bit, which is why I try to be very careful about what I say to him and about him. He may not be able to talk, but that doesn't make his opinion or his needs any less important.

As we prepare for Emmett to start preschool, I pray that his teachers and caregivers are understanding and take time to figure out what he needs. Many people think that once Emmett starts walking, talking won't be too far behind. I am hopeful that this is the case and look forward to hearing his first words. In the meantime, I will enjoy his babbles and giggles and will do my best to understand what he's trying to tell me, even if he's screaming as we drive down the highway!

I can't take credit for the quote,

but I can at least take partial credit for this handsome boy!

Mommy's New Adventure

A few weeks ago, I shared with you how Emmett aging out of the Early Intervention program will start a new adventure for us. This has proven to be true with at least 6 appointments a week, but this is only the beginning of our new adventures.

Many of you know that over the past 14 months, we have been taking Emmett to see an Anat Baniel Method (ABM) practitioner to receive "movement lessons." The closest ABM practitioners are at least two hours away and we can only afford to take him every 8 weeks or so, but we have seen incredible improvement in his movement, as well as his overall awareness and involvement with the world around him. These lessons are normally done in blocks of 2 lessons a day, for 3 days.

The results we are seeing are so profound that I have decided to take the training myself, not only to benefit Emmett, but also other children with special needs and adults with chronic pain.

This was not an easy decision to make! When I first saw the cost and the logistics of traveling for the training, I honestly thought it was unattainable. However, the more I watched these lessons and how Emmett responded to them, the more I felt like this is what I am supposed to do. Leaving my family for several days at a time will not be easy, but we are going to make this happen.

Please remember our family in your prayers, as we prepare for another big change. My training will start next March. I am both excited and terrified to start a whole new career at nearly 40 years of age, but I know that it will be awesome for our family and I hope to help many other families along the way. I will keep you posted as we get closer to start time and look forward to sharing our ABM journey with you.

Our little water bug... The reason I decided to "take the plunge!"

New Adventures Ahead

Today was a big day for us. Not only was it Emmett's 3rd birthday, but it was also the day that he officially aged out of First Steps (our early intervention program). Emmett has received in-home therapy through First Steps since he was 9 months old. This will definitely be a huge transition for us because we have been truly blessed with a great team of therapists. I'm not sure who will miss them more. Every day Corbin asks, "does Emmett have any therapy today?" and Emmett knows that when I unlock the front door, there is a good chance that he will see a familiar face very soon. Having four different therapists come to our house every week has become our "normal" routine and I don't think that either of one our boys remember what life was like before therapy!

Does this mean that Emmett is done with therapy? ABSOLUTELY NOT! Thankfully, he will continue with weekly Hippotherapy, which we plan to continue for as long as possible. We also started the process of lining up his summer therapy several months ago, which entails more evaluations and insurance approvals. I think things are finally coming together, but we will definitely be on the road a lot this summer. I will have to scope out some parks along the way, just to make sure that our summer isn't all work and no play!

Then, starting in mid-August, Emmett will start preschool and receive therapy at school. These will be big changes for all of us, but I'm thankful that our boys adjust well to new situations and I look forward to our new adventures.

Big Brother Knows Best

Several weeks ago, I thought it might be fun to interview our older son, Corbin, to see what he had to say about Emmett. Corbin just turned five and was 25 months old when Emmett was born. He has been present at the majority of Emmett's therapy sessions and many of his doctor's appointments.
As you can imagine, the interview process was a bit silly, but I enjoyed hearing what he came up with and I am sure he will enjoy reading it, when he gets older. The questions are in red, Corbin's responses are in blue, and further explanations are in black

Emmett: According to Corbin:

Emmett's Favorite Color: Red and blue (first answer) green (second answer)
Favorite Drink: Milk and orange juice (Milk is his favorite. However, we rarely even have orange juice in the house)
Favorite Food: Macaroni and cheese (one of Corbin's favorites) Then, he came up with: cottage cheese, applesauce, and pear sauce (which was a little more on track)
Favorite Thing to Do: Go outside
Favorite Song: The Ants Go Marching (Corbin's favorite)
Favorite Toy: His stuffed dog (which is actually Corbin's latest obsession) Then, I reminded him we were talking about Emmett's favorite toy and he said, his musical drums
Emmett's Favorite Thing to Do: Watching me play games (on the phone or computer)
Favorite Book: The Very Hungry Caterpillar
Which one of Emmett's therapists do you like the best? His occupational therapist (he actually called her by name) and when I asked him why, he said "because she brings snacks" (Part of Emmett's OT includes feeding and she always brings a little extra to share with Corbin. For the record, he loves all of Emmett's therapists and they all try to include him as much as they can)
What does Emmett like to do with you? Bonk me in the head (I'm not sure where this answer came from, but he does occasionally like to pat Corbin's head like a drum)
Corbin's Favorite Thing to Do With Emmett: Play outside
Favorite Exercise to Do with Emmett: Karate chop (this one just made me laugh)
What do you remember about when Emmett was first born? I said, "Stand up!" (he probably doesn't actually remember this, but I have told him about it. When we first brought Emmett home from the hospital, Corbin walked over to him and said, "Stand up!")
How is Emmett different from other kids his age? He's weak (his muscles are weak) and he can't play (like other kids)
Why can't Emmett have water? Because it makes him choke (aspirate)
Why can't Emmett talk? His mouth is weak
What can Emmett do now that makes you proud? Crawl and walk (with help)
What does Emmett do that makes you crazy? Clap 
Does that make you crazy in a good way? Yes
What makes you crazy in a bad way? When he's sad
What does Emmett do that gets you excited? When he tries to jump with me
What do you do to make him laugh? Funny stuff (no one can make Emmett belly laugh like Corbin!)
What do you like to teach Emmett? To be bigger
What do you think he will be when he grows up? A police man like me
What show do you like to watch with Emmett? Paw Patrol

Although Corbin is only five, he knows a lot about his little brother. He knows all of Emmett's therapists by name and therapy type. He understands that Emmett is different from other children, but loves him for who he is and has a pretty good grasp of how low muscle tone affects him. He tells me if Emmett is going into the kitchen, so he doesn't fall and get hurt. He is also good about making sure that Emmett doesn't eat things he shouldn't and will even pry his little mouth open to retrieve something, if necessary.
Now that Emmett is getting close to walking, Corbin likes to take him by the hands and help him walk. He also truly gets excited when Emmett stands for several seconds or does something he has never done before.
I know that it must be hard to have a brother with special needs, but I am thankful that Corbin doesn't take it out on Emmett. Just the other day, I was busy making dinner and Emmett was having a snack that required me to spoon feed him. He was ready for more and Corbin said, "I can do it, Mommy." I thanked him for helping and he said, "That's what brothers do!"
I know that there are days that Corbin may feel a little overlooked, but it's moments like this that make me realize that it doesn't change how much he loves his little brother.

This made me think of Corbin and the love he has for Emmett!

I am one lucky mommy!

 
 

The Friends I Have Never Met

The world is a very different place, than it was when I was young. Sometimes it is hard to remember what it was like before the internet. It was a simpler time and I do miss it sometimes, but then I think about how different our journey would have been without modern technology. The countless hours I have spent researching Emmett's symptoms, new therapies, and doctors, would have literally taken me years to navigate, without the internet. I never would have heard of some of the best treatments out there and I don't even want to think about how many times I would have gotten lost on my way to one of Emmett's appointments, without navigation on my phone.
One other thing that would have been profoundly different, without modern technology, is my network of friends. I am blessed to say that I have an amazing support system of family and friends who love Emmett unconditionally, but I also have a whole other network of "friends" that I have never met. These are the families that I have connected with through online support groups, that never would have existed without the internet. These are people from all over the world who are on a similar journey. Some of them have children with only a few similarities to Emmett, while others have the same diagnosis.
Even though we have amazing family and friends, having a child with special needs can still be lonely at times. However, being able to connect with other families, who face similar challenges, has made this journey a lot less lonely. These groups have been a great place to vent, share ideas, ask for advice, and share exciting progress. The past few months have been especially exciting because we are beginning to connect with other families that have children diagnosed with Xia-Gibbs Syndrome. When we were given the diagnosis in November, we were told that there were only four other known cases. We don't know much about the syndrome yet, but it has been interesting to compare notes and see how similar our children truly are.
I may never meet a lot of the people that I have been in contact with and I may not even know much about them, but I do know that having them to relate to has been a lifeline for me. The internet can be a dangerous place, but it can also be a great resource to connect with people in a positive way, to encourage them, give them advice, and let them know that they are not alone. So, thank you to all of the friends I have never met. It is good to know that I am not alone in this journey and I hope that I have been able to help some of you, like you have helped me.

How God Prepared Us for Emmett

When I used to think about getting married and having children, I never really considered the possibility of having a child with special needs. While I was pregnant, we never considered doing any extensive tests to determine if our unborn child would be born with anything out of the ordinary. We weren't oblivious to the possibility, it just didn't matter. No matter what child God gave us, it wouldn't change how much we loved it, so we chose not to do any testing. Standard prenatal screenings wouldn't have detected Emmett's syndrome anyway. A few months ago, I started thinking about how God prepared us for Emmett. The more I thought about it, the more I realized He had been preparing us for most of our lives.

Although my husband, Seth, and I had never met anyone with Xia-Gibbs Syndrome before Emmett's diagnosis, we did intimately know people who faced challenges in life and we loved them unconditionally. My first experience with someone who had a physical impairment was with my dad. He was severely injured in an accident as a toddler, which left him with only two fingers and a thumb. Although he may have looked strange to others, he was just my dad and he learned how to do just about anything, with very few limitations. I think that by seeing what my dad had overcome, it helped me realize that you shouldn't put limitations on people, regardless of their disability or diagnosis.

When I met Seth, I quickly learned that he had a twin brother, Nathan. He was mentally impaired and epileptic, as the result of a childhood illness. Although Nathan had his challenges, his family treated him as an equal and had high expectations of him. He was a hard worker and had a child-like spirit that could always brighten your day. I only knew Nathan for a short time before he passed away, but I am thankful that I got to know him and it gives me hope that Emmett will be happy and accomplish many things, even if it isn't what others perceive as normal. I truly believe that having Nathan as a part of the family, helped prepare us for Emmett.
I'm sure that my dad sometimes wondered why he had to lose his fingers and I know that Seth has wondered why his brother had to get sick. No one truly knows why these things happen, but I do know that these circumstances did help prepare us for our journey with Emmett.

I also often wonder why Emmett has Xia-Gibbs Syndrome, but I can't help but think that what we are going through now will help someone else along the way.

Mr. Mischief

I first suspected that something was "off" with Emmett very early on. I remember telling my close friends that I was concerned because he didn't smile much and was not easily amused by things that most babies would love. It was too early to pinpoint developmental delays and many people said that he was just taking everything in and that he would be fine.
When he was diagnosed with low muscle tone, I began to understand why he was "the observer" and seemed more serious. As he became stronger and was able to do more, his personality began to come out more and more. It has been a slow process, but he is really starting to show his mischievous side.
A few weeks ago, we were playing outside and he had mittens on his hands. He loves chewing on things and managed to pull one of his mittens off with his teeth. Well, a few minutes later, he managed to pull the other one off, the same way. These are the pictures that I took and I think that it is very clear that he knew exactly what he did and that he is very proud of himself.

He isn't saying any words yet, but he will mimic kissing, laughing, and even coughing. He loves copying these sounds and loves to see our response when he does it.
He has great facial expressions and will look off to the side or flash a mischievous grin, when he is up to something or doesn't want to do something. He will also scrunch up his face in disgust or make an awful, throaty sound when he gets upset or mad.
These may seem like little things, but it shows me that he understands far more than he can express and that he is learning to communicate, even if it is only with a silly face, grin, or giggle. I love watching his personality unfold and look forward to seeing him get into more mischief. After all, that's what little boys are supposed to do!