Remembering Grandma...

How do you explain death to a child that is developmentally delayed? How do you tell your child that one of his best friends has gone to heaven?

My mother, Emmett’s Grandma, recently passed away. Her health had been declining over the past few years and we knew that it was coming, but it was definitely hard to say goodbye.

Although my mother loved all of her grandchildren very much, Emmett and Grandma always had a special bond. Initially, I think it just made sense for them to be together more because Emmett was not only the youngest, but he also needed to be held a lot and watched more closely than the other grandkids. She was always happy to help and Emmett has always been a cuddle bug, so that was an added bonus. Whenever we would get together as a family, my mom was happy to have Emmett sitting on her lap or letting him lead her wherever he wanted to go. She would also help by feeding him so that Seth and I could have a chance to eat, and she even provided respite care for him until she was no longer physically able to.

When we received Emmett’s official diagnosis in late 2014, my mom became one of his biggest advocates. She shared information about Xia-Gibbs Syndrome and my blog with just about anyone she met, whether she knew them or not. If she saw a parent with a child wearing a helmet or orthotics, that was often all it took for her to strike up a conversation.

They were definitely two peas in a pod and being together brought so much joy to both of them. I remember one time when we hadn’t seen my mom in a while, Emmett was so excited when she arrived that he was nearly in tears and he gave her the biggest, tightest hug.

In the past few years, she mostly relied on a wheelchair, but that never stopped Emmett from reaching for her hand, hoping she might get up and walk with him. He also discovered that if the wheels weren’t locked on her wheelchair, he could push her around— and he thought that was hilarious! We just had to be sure that he didn’t crash her into anything!

When her health seriously declined a few months ago and we knew that she was near the end, I tried to prepare Emmett as well as I could by telling him that she was very sick and that she would be going to heaven soon. We aren’t completely sure how much Emmett understands. Since he’s developmentally much like a 2- to 3-year-old, the concept of death is difficult to explain.

Emmett uses a communication device for his basic requests, and asking for his favorite people is something he does often. ‘Grandma’ has always been one of his top requests, which has made not seeing her a tough transition. She was such a big part of our lives before moving into the nursing home, and even in recent years, we made sure to visit her at least once a week.

When I learned that my mom’s passing was imminent, I reached out to Emmett’s ABA center to ask if they had any suggestions to help him cope with the loss. They offered to create a personalized social story for him, using photos and a simple narrative to explain our beliefs—like Grandma being in heaven—and to reassure him that it’s okay to feel sad. The story also lets him know that even though he can’t see her, he can ask to look at pictures and talk about her. To support this, they added buttons to his communication device so he can make those requests. While no book could ever replace his grandma, I do believe it’s helping him process the loss and understand it, at least on some level.

I know with time things will get a little easier, and we’ll settle into our new normal without Grandma, but we will never forget the amazing bond that she shared with Emmett and all of the sweet memories that we shared as a family.

Time Flies...

It is hard to believe that it has been 10½ years since we received Emmett’s diagnosis and I started this blog. There were only a handful of people diagnosed with Xia-Gibbs Syndrome in 2014 and there are now over 500. Some people are being diagnosed as infants, while others are well into adulthood. Although there are some diagnosed with mild symptoms, many are very much like Emmett and require constant supervision and help with many everyday things.

Ten years ago, we were hopeful that Emmett would “catch up” with his peers. Although we have come to the realization that he won’t, he has made a lot of progress and continues to learn new things. His future may look different than a neurotypical person, but he can still live a full and happy life. Unlike most kids his age, he’s not interested in the latest video game or cell phone, but would much rather just hang out with his favorite people or enjoy his favorite snack.

Although Emmett is still small for his age, he has definitely grown this year. The pants that he wore last year are easily 2-3 inches too short now and he weighed a whopping 62 pounds at his last doctor’s appointment. He may have toddler sized feet and only be the size of an average 9 year old, but he officially became a teenager this weekend and is definitely starting to get the teen attitude!

Trying to rationalize with a teenager that is developmentally delayed is not easy. I think one of the most difficult things for Emmett to understand is the concept of time. If he hears us mention anything that is going to happen in the future, he either gets upset or thinks it is going to happen immediately. He has become an expert with his communication device and will persistently push the buttons for specific people, places, or food over and over again. If he doesn’t like what we’re doing, he pushes, “I'm all done” and “get up” repetitively, no matter how many times we tell him it’s not time yet. He will also string some of his thoughts together, like: "mom", "kitchen", and whatever food he thinks he needs at the time. If it isn't time for his current requests, we try to redirect him, but when he gets an idea in his head, it can be very hard to get him interested in anything else. Often times, he will stand by the door or bring us our coats or shoes, in hopes that it will convince us to go somewhere. He is definitely a social butterfly and would much rather be out and about than be stuck at home. Emmett goes to his ABA school year round and only has breaks on the weekends and major holidays, so we can see why he thinks he should get to go somewhere every day, but the rest of the family definitely enjoys our down time.

Although we can't always honor Emmett's requests, we have been pleasantly surprised that he is starting to show a little more interest in some toys and will actually request to play with them. His most recent interest is playing with balls. Not only does he request to sit and bounce on our exercise ball, but he also asks to play with a smaller ball that he will catch, roll, and even lightly throw. We have been trying to teach him how to throw a ball for years, but he would only drop it straight down or hand it to us. This may seem like no big deal for a typical child, but this is huge for Emmett and the fact that he is asking to play is even more exciting. He has had his communication device for over 3 years, but it is amazing to see how much more he can do with it now.

When Emmett was three, I wrote a blog entry called, "Waiting For Words" and I was hopeful that he would eventually be able to talk. Although this hasn't happened and we aren't sure if he ever will, he has learned how to communicate in many other ways and he understands a lot more than most people realize.

However, there are some things that I don't think he fully understands. We recently decided to move Emmett to a smaller ABA center. Although I started talking about the change with him a few weeks before he switched, I could tell that he was a bit confused for the first week or so. He definitely had some favorite people and things at his previous ABA center and I'm sure that he was missing them, at first, but I'm happy to report that he is adjusting well and seems to really like the new place.

Emmett will also be experiencing another big change because he will no longer be attending Hippotherapy. For those of you that may not know, Hippotherapy is a form of physical, occupational, or speech therapy that uses horseback riding to improve physical, cognitive, or communication skills in people with disabilities. This has been one of Emmett’s favorite weekly activities for nearly 11 years, but unfortunately, they only see children until they turn 13. He has been riding a horse and doing physical therapy there since he was 2 years old and we added occupational therapy a few years later. He consistently asks for his therapists, other friends, horses, and activities using his communication device, so this will definitely be an adjustment for him. Emmett may miss the horses and may not fully understand why things have to change, but he will start physical and occupational therapy at another location soon and I'm sure that he will settle into his new routine before we know it.

I'm probably feeling a bit more sentimental, since Emmett just reached a big milestone birthday and he's had some big changes in his routine lately. Change is inevitable and is sometimes hard, but Emmett is resilient and has adjusted to many changes throughout his life. I'm sure that more changes are ahead and we will make the most of them. He will learn new things, meet new friends, and continue to grow. When people tell you to enjoy your kids while they are little, you should definitely take their advice, but there are also many things to look forward to as they get older.

Our boy has grown so much!

Photo collage of Emmett's first ABA program

Photo collage of Hippotherapy

The Force is Strong with These Two

This has been an eventful year and it is really flying by! I can’t believe that it is already November. This spring, Emmett’s big brother, Corbin, finally convinced us that we should welcome a dog into our family again. It has been 6 years since we lost our sweet dog, Cody, so getting a puppy has definitely been an adjustment. We wanted to be sure that whatever dog we chose would be good with Emmett, so we were glad to find a puppy that was a little older and had been socialized with young children. We let Corbin choose his name and Jedi joined our family in mid April. I could tell early on that he would be good with Emmett. Although Emmett doesn’t play with Jedi like a typical child might, he definitely likes having him around.

A few days after we brought Jedi home, we discovered that Emmett thinks it’s hilarious when Jedi gets in trouble. If we reprimand Jedi for doing something wrong, Emmett giggles like he’s saying, “Ha, ha, you’re in trouble and I’m not!”

Ironically, Emmett and Jedi often get reprimanded for similar things: chewing on things that they shouldn’t, pulling laundry out of the basket, and trying to snatch food. There are times that I think they are secretly plotting against us! Emmett recently discovered that he can not only open the side door and go out to the garage, but he can also open the van door and get into his booster seat all by himself. Now that Jedi is part of the family, they both like to “escape” into the garage and will both get into the van or if the garage door is open, they will both make their way outside! Needless to say, we definitely have to watch Emmett closely, if the garage door is open.

Emmett also cracks up when Jedi barks, which is definitely counterproductive if we are trying to discourage Jedi from barking. However, I am thankful that Jedi’s bark doesn’t scare Emmett or make him cry because that would be so much worse! I’m equally thankful that Emmett’s loud vocalizations don’t seem to bother Jedi. On the first morning that we had him, Emmett started making sounds like he normally does when he wakes up and Jedi looked up at Corbin to make sure that everything was okay. Once he knew that we weren’t concerned about the sounds that Emmett was making, Jedi seemed completely unbothered by it.

I’ve also found myself calling Emmett by Jedi’s name and vice versa. I honestly think that I get their names mixed up more than I do Corbin and Emmett’s.

Something else that I noticed when we first brought Jedi home was how much more affectionate Emmett was with Corbin. Don’t get me wrong, Emmett is all about his big brother, but I think he was a bit jealous of all of the attention that Jedi was getting from Corbin, so he was giving him even more hugs and cuddles. Emmett also likes to be close to Jedi, jingle his tags, and touch his fur, but he will sometimes try to pull his hair or pet him a little too hard, so we have to watch him closely. Jedi is very patient with Emmett and likes to come into his room when I go in to get him every morning. He also likes to lick Emmett, which we try to discourage, but Emmett doesn't seem to mind it.

For those of you that may not know Emmett, he always wants to be where the action is! If someone leaves a room, he isn’t far behind. This is also true with Jedi, so I can pretty much count on having not one, but two little “shadows” following behind me now. They are also both experts at wanting attention from the person that is busy doing something, even when there is someone else completely available to attend to them.

In addition to wanting to be where the action is, they are also very observant and enjoy watching what is going on around them. If the neighbors are outside or a delivery person stops at our house, it is a pretty safe bet that they will both be watching their every move.

Emmett and Jedi are also equally interested in food and they both let us know if they think it is time to have something to eat. In fact, we had to get Jedi a slow feeder, so he wouldn't eat too fast and Emmett will just keep stuffing food in his mouth, if we don't watch him closely.

Although there is obviously a huge difference between Emmett and Jedi, it is funny how many of their personality traits are so similar! They keep us on our toes, but it is fun to see how they interact and communicate with each other. The force is definitely strong with these two and it will be interesting to see how the relationship between them changes through the years.

Seriously Sweet

Hug or Headlock?

Snuggle Buds

Just Hangin' Out!

Double Trouble

The Little Escape Artists

Puppy Love

Outdoor Shenanigans 

Our nearly 50 pound “lap dog” looks huge in this picture!

Christmas Catch Up

It’s hard to believe that Christmas is here again! Emmett is doing well, but the holidays are always kind of hard for him. Like many children with special needs, a change in the usual routine can be difficult. He loves going to his ABA program every week day and is not a fan of being home for long periods of time. The past few days have been particularly frustrating for him because it has been too windy and cold to be outside or go anywhere. He’s not a fan of TV or movies, so Christmas movie marathons don’t entertain him at all.

We don’t fully know how much Emmett understands about Christmas, but we always include him in our traditions. Every year at our church candlelight service, the children do a nativity scene. Through the years, he has been baby Jesus, a sheep, a king, and a shepherd. This year, he was a shepherd. Before the service, all of the children got dressed in their costumes and waited in one of the classrooms. While they were waiting, Emmett kept trying to escape into the sanctuary because he wanted to be where all of the other people were. He is definitely a people person and he doesn’t want to miss out on anything. Once the kids were on stage, our pastor finished reading a Bible verse and sat down. All of the kids were supposed to stay together on the stage during a song. About halfway through the song, Emmett decided to join our pastor on the side pew. We joked that we needed a shepherd for our shepherd, but it honestly didn’t bother anyone that he wanted to do his own thing.

In many ways, I’m thankful that Emmett doesn’t seem to care that he does things differently. Earlier this week, we took him and his brother to see Santa. Emmett honestly couldn’t care less about seeing him and was more interested in playing with his bells. Of course, he also doesn’t really care about toys either, so why would he care about seeing Santa!? Besides that, we were actually there to see Grandma too and grandma’s are way cooler than Santa!

Although Emmett doesn’t get too excited about Christmas, he does enjoy the holiday treats, like cookies and hot chocolate. A few weeks ago, he did a really good job of “supervising”, while I was making cookies. Just before I put the last batch in the oven, I turned my back for a second and he snatched a cookie dough ball right off of the cookie sheet and popped it in his mouth! He had been watching so patiently and I had just told his brother how well he had been doing. A few days later, we made cookies at Nana’s house. I helped him ice one of the cookies and I let him eat it right away. He actually didn’t snatch any cookies that day, but while we were cleaning up, he stuck his hand in some of the leftover icing and sampled some. His impulse control is definitely getting better, but that bowl of icing was just too tempting!

The other thing about Christmas that Emmett loves is spending extra time with his favorite people. He doesn’t care much about presents, but definitely enjoys being with his family and friends.

I hope your holidays are filled with yummy treats and the people you love, just like Emmett’s will be!

Watching the train at Nana’s house

Emmett, the wandering shepherd, and his brother, the king.

Showing off his ugly Christmas sweater

Checking out Santa’s bells

So many cookies… so little time!

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.