Bittersweet Birthdays

It’s hard to believe that our sweet boy is 10 years old! Although he has made a lot of progress and we have made many great memories together, Emmett's birthdays are always a little bittersweet. 

When Emmett’s brother turned 10, I made a compilation video of him through the years and decided to do the same for Emmett. However, I didn’t realize that the process of choosing a background song would bring up so many emotions. Of course, going through countless videos brought tears to my eyes too, but not in the same way.

There are a lot of songs about children growing up or the love that a parent has for a child, but it was hard finding a song that seemed to fit Emmett. Many of the lyrics are about the things that most children do as they grow, like climbing trees, jumping in puddles, and riding a bike. Emmett can do his own version of these things with help, but not on his own. Other songs have lyrics about how quickly things change, falling in love, and going out into the world. While these things are very common for most people, this is not our reality with Emmett. Of course, he is growing up and learning new things, but he needs constant supervision and it is unlikely that he will ever be able to live independently. Most of the time, I try not to dwell on these things, but it is hard to completely put it out of my mind, especially now that he has reached double digits and is still very much like a toddler.

The good news is that he doesn’t seem to care that he is different and he is usually pretty happy to just be with the people he loves. So, as I continued my search for the perfect song for his video, I found one that seemed very appropriate. The lyrics are likely written for a much younger child, but the message is just right for Emmett:

“Big World, Baby” by JJ Heller:

Little hands, when you get tired
I will help you through
Little heart, when you get broken
I will shelter you
Little ears, if you will listen

You will hear the truth

You will hear the truth

It’s a big world, baby

Big enough to dream

You’re not too small to do great things 

I’ll be with you, right beside you

Hold you when you cry

When the rain is falling on you

I will keep you dry

When you sail on stormy seas

I will be your guide

I will be your guide

It’s a big world, baby

Big enough to dream

You’re not too small to do great things 

Hear the music play

Dancing in your soul

Listen to the symphony

You’re beautiful!

* * * * * * * * * * * * * * * * * * * * * * 

Emmett may not be able to do many things that other children his age can do, but he is definitely doing more than any of us could have imagined a few years ago. He may need our help to keep him safe, but isn’t that what parents are supposed to do?

There’s no way to know for sure to know what the next decade will bring, but we will do what we can to help Emmett do great things. I truly believe that he has already done great things by simply being himself and by the way he shows his love to others.

Check out Emmett’s video here:

Emmett: The First 10 Years

Emmett’s giant snickerdoodle cake!

Loving the beach

Brothers

Our little man

Just A Little Update

I can’t believe that the year 2021 is nearly over. Although things aren’t quite back to “normal”, they are definitely getting closer. All in all, Emmett has had a good year. Thankfully, he has been pretty healthy with just a few mild colds. He continues to get stronger and make progress. He has also gotten taller and has lost a few more baby teeth. He is still small for his age and has toddler sized feet, but he is growing and may actually reach 50 pounds by his 10th birthday!

Although Emmett has been healthy, one of his doctors was concerned about his posture because he tends to hold his shoulders back and push his belly out when he walks. This summer he got a flexible back brace to help minimize this, which will hopefully prevent back problems in the future. He doesn’t have to wear it all of the time, but he actually really likes it because it is very snug. I think he likes the compression feeling and feels like he’s getting a tight hug when he’s wearing it. We followed up with his doctor a few weeks ago and she believes that it is helping.

We also recently discovered that Emmett likes to wear hats. Over the past several months, he has been hitting himself on the head with his hand. He would sometimes do it out of frustration, but other times, there didn’t seem to be any triggers. After trying a few different things to minimize the behavior, with the help of his ABA program, we realized that wearing a hat seems to help. He must like the gentle pressure on his head. He will still hit himself occasionally, but it has decreased significantly since we started giving him a hat to wear. Many people with Xia-Gibbs Syndrome are sensory seekers, so this makes complete sense. We definitely don’t want him hitting himself, especially as he gets bigger and stronger, so I hope that this strategy continues to help.

One of the most exciting things about this year is that Emmett has finally learned how to isolate his pointer finger and has been learning how to use a communication app on an iPad. As his skills improve, we will be able to add more folders and choices for him. He has been using pictures on Velcro to communicate for quite a while, but being able to use a device will definitely make it easier to keep up to date and make changes. In the past, he just didn’t have the understanding or the fine motor skills to properly use a touchscreen, which meant we couldn’t get a device covered through insurance. Thankfully, we were able to borrow a device for him to practice on and he has made amazing progress, which means that he will be receiving his very own device within the next few months.

He has actually gotten so used to using an iPad to communicate, a few months ago, he thought that the license plate on his Nana’s car was an iPad and he couldn’t figure out why it wouldn’t do anything when he pushed on it.

Even when he doesn’t have his pictures or an iPad to use, Emmett is still very good about showing us what he wants. Typically, if I hold out two things for him to choose from, he will either grab what he wants or push away what he doesn’t want. A while back, I held out two different types of cookies for him to choose from and instead of grabbing one, he leaned over and took a huge bite out of one of them! I’d say that his choice was very clear that time. We don’t always understand what he wants, but I am thankful that we can figure it out most of the time. It is definitely a lot easier than it used to be.

I’m not sure what the year 2022 will bring for Emmett, but I do know that he keeps making progress and that he will continue to amaze us.

Little Man looking like a teenager!

Emmett loves looking out the window and wearing hats.

Someone snatched a cookie as soon as he noticed that they had been decorated!

Embracing Precious Moments

When I first started my ABM® NeuroMovement® practice, Embracing Movement, I decided to use the silhouette of my boys walking together as my logo. I based it off of a photo that I had taken a few months after Emmett had started walking. His brother, Corbin, was watching him carefully and holding his hand. Emmett was still a bit unsteady and unsure, but every step was a beautiful reminder of how far he had come. Every time I look at my logo, I am reminded of that moment and I thought it was only fitting to use an image of what inspired me to become a practitioner in the first place.

Last fall, I took a similar photo. To many people, it may just look like a sweet photo of two brothers walking together. However, if you look closer and you know more about our journey, it is so much more! This is a photo of a little boy who has had countless hours of therapy and didn't walk until he was 3 years old. It is also a photo of a big brother who has been Emmett's protector and cheerleader, every step of the way.

5 1/2 years later, I'm thankful that they still have an amazing bond, but some things are definitely different. Instead of focusing on every step, they are nearly running and Emmett is leading the way! He may not be able to do everything that other children his age do, but he has made huge gains. I've learned to embrace every little accomplishment because those little accomplishments add up to much bigger things! It is hard to imagine what Emmett may be doing in another five years, but I know that he will continue to amaze us and that his brother will continue to walk beside him and I will continue to embrace these precious moments.

Sheltering in Place

The year 2020 will definitely be a year that no one forgets! People around the world have been affected in many different ways. Every situation is different and while our situation is better than many, it has still taken some time to get used to. With the exception of a few short car rides and walks, the two boys and I haven't left our property since March 18th. I'm very thankful to have a big backyard and plenty of things to keep us busy, but it has definitely been an interesting time. We have taken the shelter in place order very seriously, not only because Emmett could be considered high risk due to his low muscle tone and being prone to upper respiratory infections, but also for others that may be at even higher risk.
For the most part, our third grader, Corbin, seems to be taking the shelter in place order in stride. Aside from being extremely sad when we had to reschedule our trip to Orlando and missing his friends and family, he is pretty content doing his school work in his pajamas and hanging out at home. He has definitely gotten more screen time than I’d like to admit, but he has also done more creative projects, has played more board games, and has spent more time outside. He has also been helping us cook more and has even learned how to cook a few things on his own.
Emmett, on the other hand, is not quite as content. If you know Emmett, you know that he loves his routine and he especially likes going to his ABA “school”. Every morning starts out the same way. After breakfast, I help Emmett get dressed and I normally say, “are you ready to get dressed to go nowhere?” I say this in hopes that he will be okay with staying home. He seems excited at first, because for him, putting on clothes means that we ARE going somewhere. If I don’t get dressed in “real clothes”, he will go into my room, pull clothes out of my dresser, and bring them to me. He does the same thing with coats and shoes. All of these things mean “GO” for Emmett.
I think the fact that his dad is still going into work makes him think that he should be going to school. After all, that is how it has been, since he was 3 years old. I can understand why he would think that, but unfortunately, that is not the case right now.
Once he is dressed, he takes me by the hand and leads me to the front door, where we hang his jacket and backpack. This boy wants to go to school!
I tell him that I understand that he wants to go to school, but it is closed right now because lots of people are getting sick and we have to stay home so that we don’t get sick too. He looks at me with disappointment and fusses with frustration, but he eventually realizes that we really aren’t going anywhere. He does this several times a day, EVERY day! He seems to be getting more used it, but it doesn’t change the fact that he gets frustrated.
In our normal routine, Emmett normally gets one-on-one assistance and therapy for 35 hours a week. They focus on communication, fine and gross motor skills, social interaction, and life skills. He also normally has hippotherapy (therapeutic horseback riding) combined with physical therapy and occupational therapy for two hours every week. This may seem like a lot for a little guy, but these services have truly been a game changer for Emmett and he loves it. They are all providing support via video conferences and emails, but I simply can’t do everything that they do in the same capacity.
Although it isn’t the same, I do my best to integrate things to help him improve his skills throughout the day. I have also been able to give him more ABM© lessons, which is definitely a good thing. During this change in our routine, he has made great progress in a several areas. While being home, Emmett has mastered opening doors with doorknobs and standing up from sitting on the floor without crawling to furniture or to one of us for help. He is also showing more interest in some of his toys and books and is following simple requests more consistently. He has even figured out how to open the refrigerator. (which may be getting a lock very soon!)
Although this may not be an ideal situation, it has actually been really good for all of us. We may not be physically seeing our family and friends, but video chats have helped us stay connected. We have also talked and texted with them more in the last several weeks than we normally do, so in some ways we are more connected than we have been in a long time. Emmett is extremely social, so being able to see the people that he loves definitely helps. Anytime he sees his family, friends, or therapists on a video call, his face lights up and he giggles. It may not be the same as seeing them in person, but it does make it a little easier being able to see their faces.
Don’t get me wrong, it will be nice to see people face to face and to get back to our “usual routine”, but I’m also thankful for this time that we have had to slow down. Although both boys are still early risers, we don’t have to rush to get ready to go anywhere! We can do school work outside, take recess whenever we want to, and have church in our pajamas. We may get a little stir crazy, but it has also been a time to make memories and really appreciate what we have. I hope that you have been able to find the blessings in all of this as well.

Here are a few photos from the past several weeks.

Can we please go somewhere?

Emmett's not so subtle hint!

Double trouble!

Enjoying the sunshine!

Corbin making scrambled eggs.

Outdoor school time.

Look who can open the pantry now!

Easter egg hunt in pajamas and new rain boots!

Hakuna Matata! We will get through this!

Reality Check

I have a confession to make: my boys are not always happy! You may have noticed that most of the pictures that I share on social media and on my blog are of very happy boys. Big smiles, sweet moments, and coordinating outfits may make for beautiful pictures, but let’s face it... these are only moments in time and in between those moments are many other not so happy moments.

Don’t get me wrong. We have a pretty good life, but it is definitely not “picture perfect”. In most situations, I tend to be an optimistic person. I just know that through experience and observation that it is easier to get through the tough times by making the best of what life throws at you. However, that doesn’t mean that we don’t have bad days, cry or even get angry.

Most people think that Emmett is always happy. When we are out, he is normally pretty happy, but he often times gets really frustrated at home or even if we are out and he is ready to be somewhere else. He is constantly asking to “go” with his pictures or by bringing us our coats or shoes. He gets especially mad if his dad and his brother leave and they don’t take him too! He also cries almost every weekday morning, when he realizes that his dad has already left for work, even though this has been the case for his entire life! We can normally work through it, but it can be exhausting at times. Although his communication skills have improved, it is hard for us, as parents, not knowing for sure what Emmett wants and I’m sure it is equally frustrating for him.

Emmett’s not the only one that has “not so happy” moments. We all do! Mine tend to sneak up on me when I least expect it. Sometimes when I’m watching other children play, I can’t help, but get a little sad. Even some toddlers are doing things that Emmett still can’t do. A few weeks ago, I was going through the boys’ toys to donate and started tearing up. Not because I didn’t want to part with them, but because Emmett never played with them. There are so many toys that I’ve held onto in hopes that Emmett would show interest in, but even at 7 years old, no toy holds his interest for more than a few minutes. Is that something to cry about? Probably not. But it does make me a little sad that he doesn't take joy in playing and pretending like other children. It clearly doesn't bother him, but it sure would be nice to say, "why don't you go play Legos with your brother?" Oh, wait, did I mention that Emmett also puts everything in his mouth? Okay, maybe the Duplo blocks are a better idea. Either way, he is not interested. I know that this can be hard for Corbin too because most children can play and pretend with their siblings for hours. He never really complains about it, but he definitely asks us to play with him a lot and often wants to have friends over to play, so I do feel like he misses out on some things.

Thankfully, Corbin currently seems fairly unfazed by the fact that his little brother is different. He may get a little annoyed when Emmett tears something up, chews on his toys, or is crying really loud, but for the most part, he is really good with him. He has also had to learn to be more patient because Emmett requires more help and doesn’t do things very quickly. That’s not necessarily a bad thing, but it is definitely a reality. We try to keep a balance, but there are times that I have to miss things with Corbin because Emmett has an appointment or just doesn’t do well in some situations. I guess that can happen anytime you have more than one child, but that doesn’t keep me from feeling bad about it. However, this year, between his stomach problems and breaking his arm, Corbin has gotten a lot more one on one time. He even tied with Emmett for the number of times that he's been to the to the ER! We definitely don’t want to have a tie breaker anytime soon! Corbin is normally our "healthy one", so it was really strange taking him to so many appointments and seeing him go through so many tests and X-rays. He was a pretty good patient, but he was definitely nervous.

Although Corbin is usually well behaved and is really good with Emmett, he still has rough days, makes mistakes, and disagrees with us about some of our rules and expectations. We don't expect him to be perfect and thankfully, he doesn't expect us to be perfect either.

The truth is, no one's life is "picture perfect" and by now, I have hopefully convinced you that despite my positive posts, we aren’t always happy. I’d like to explain why it has taken me so long to write a new blog post. I actually had the idea for this post several months ago, but every time I tried to write it, I couldn’t quite find the words. Even now, I feel a little guilty writing about our struggles. Not because they aren’t real, but because it could be so much worse!

I know of families that have gone through so much more than we have, but continue to keep a positive attitude and never give up. Some have children that have spent weeks or even months in the hospital. Others have been investigated or have even had their children taken away from them, when they were simply trying to get them the medical help they need. Another family is mourning the loss of a seemingly healthy child that unexpectedly passed away in her sleep.

We all have our struggles, but when I hear about what others have been through, it really puts things in perspective. Having a child with special needs is not easy, but we have so much to be thankful for. So, when you see those happy faces on my blog or social media, please know that I’m not trying to create a false sense of reality, I’m simply trying to spread a little happiness in an often not so happy world. I’m choosing to focus on the good and I hope that by doing so, I’m helping others do the same.



Here are just a couple examples of our "not so happy moments"

Emmett upset when he found out his school was closed for the day

Corbin waiting to get his arm examined

And some of my many attempts for the "perfect shot"...

No Words, Just Love

I’m sure that many of you reading this have never met Emmett. However, if you ever do, don’t be surprised if he walks up to you and immediately grabs you by the hand (or by one finger, which he often does). Emmett has no stranger anxiety whatsoever! He loves people and I can honestly say that most people who meet him, love him too.

Of course, I would never turn him loose in a room full of strangers, but I do try to let him choose who he approaches, within reason.

Every week at church, Emmett loves to look out the glass doors and wait for people to come in. He has become the unofficial greeter. One advantage of a small church is that almost everyone knows him and they fully anticipate him to walk up and grab them by the hand. Even when we have visitors at church, he is completely comfortable walking over to them. He will sometimes even sit next to them or back up to them, to show them that he wants to sit on their lap. Thankfully, most people are very accepting of him and welcome the extra attention.

If we are around someone new, I always explain that he doesn’t talk, but that he loves people and I apologize if he seems to be invading their personal space. Something about Emmett must just soften people’s hearts because I can only think of a few times that he seemed to make someone uncomfortable.
He has even started making friends out in the community. This summer, his therapist took him to the park and one little boy was very interested in why Emmett wasn't talking and was carrying around a book with pictures in it. The boy's nanny explained to him that some people speak in different languages and that Emmett "speaks" by using pictures. It wasn't long before a new friendship was formed. Emmett would show his new friend where he wanted to go on the playground, using his pictures, and they would both go where Emmett requested. They were able to meet up several times over the summer and had a great time together.

Although I like to let Emmett meet people, there are some situations where I definitely keep him within arms reach. I never turn him loose in a doctor’s office because of all of the germs. I also give him limited freedom in restaurants because he loves food and wouldn’t hesitate to grab something off of a stranger’s plate. His brother has learned that the hard way. Emmett has been known to steal marshmallows right out of his brother’s hot chocolate!

As much as I love how much Emmett loves people, I know that as he gets older, he will have to be taught more about personal space. Not only because of social boundaries, but also for his own safety. He is so trusting and would literally walk away with anyone willing to take him. This love for people is actually very common with most people diagnosed with Xia-Gibbs Syndrome, which is both wonderful and scary at the same time.

In some ways, I wish we could all be a little more like Emmett. He doesn’t make a snap judgement based on someone’s appearance and he loves unconditionally. Even without saying a single word, he makes friends everywhere he goes. I’m not sure what Emmett’s future holds, but I do know that wherever he goes, he will definitely make new friends.

No words, just love.

Emmett was a little confused, when this knight statue wouldn't hold his hand. 

Waiting to greet everyone at church.

Sharing the love with some of his friends at church.

Trying to decide what he wants to do at the park.

Don't Be Afraid To Fall

Due to his low muscle tone, it took Emmett longer to start walking than most children. I remember hoping and praying that he would walk independently someday and I was ecstatic when he did. What I didn't anticipate was how easily he would lose his balance and fall. Emmett definitely doesn't fall as much as he used to, but he still has his moments. Especially when he is tired or trying to go too fast.
A few months ago, he had one of "those moments". We were getting ready to leave church, when he pulled away from someone, lost his balance, and hit his head on the edge of a pew. He got a pretty good gash in the side of his head, so we knew right away that he needed to go to the emergency room.
I've never been one to panic, but I know that having Emmett has made me roll with the punches even more. Nothing comes easily for him and he's had so many tests and procedures that this trip to the emergency room was just one more bump on this roller coaster that we call life. He actually had a similar injury, 2 1/2 years ago, right after he had started walking.
He's such a good patient that the doctors and nurses are always impressed at how calm he normally is. While we were waiting for the numbing agent to kick in, he was standing at the doorway just checking everything out and watching people in the hallway. They had to put three staples in his head and were prepared to have to pin him down, but he didn't even flinch. We also requested a CT scan, which he was equally calm for. He just kind of looked up at the machine with an expression like, "This is new, I wonder why I'm in here?"
The CT came back normal and although Emmett will likely have a scar, it will hardly be noticed because it is under his hair.
I'd like to think that this will be our last emergency room run, which would be great, but not likely. No matter how closely we watch him, he is bound to fall and hurt himself sometimes.
A few days after his fall, Chris Rice's song, "Untitled Hymn (Come to Jesus)" came on the radio. Every time I hear this verse, I think of Emmett, and I especially do now:

"And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall, so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!"

All of us fall sometimes. Whether we literally fall, make a poor choice, or just go through rough times, if we fall on Jesus, He will see us through. There may even be a scar left behind, but that's just a reminder that we survived and are a little bit stronger or wiser from whatever we have been through.
Emmett may not understand this concept, but I know that having him has definitely made me stronger and has made me rely on my faith even more.
Life has its ups and downs and we all make mistakes, but knowing that we don't have to go through it alone, makes the hard stuff a little easier. Don't be afraid to fall.

This handsome guy doesn't let a little fall keep him down for long!