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