• Kelly

Our Autism Story – “A Grandparent’s Perspective”

Brahm is incredibly lucky to have a bunch of grandparents and great-grandparents! Family is everything to us and we thought it would be cool to get a grandparent’s perspective on autism. Brahm’s Grandma Kim (Kelly’s mom) wrote this post a few years ago. Enjoy!…

I knew someone with autism as a young child, although I doubt he had a diagnosis. He was a nonverbal boy whose only activity was to sit in a lawn chair and twirl a men’s handkerchief. The other person I knew was a couple of years older than I was. He would come to watch the women’s softball games. His obsession was cars. He would always ask me the same question in the same way every time I saw him for more than 30 years: “Hey Kim, what kind of car are you driving?” I could engage him in other conversation but we always circled back to cars of which I had nothing to contribute. After speaking with his mom, I know he was never diagnosed with autism. I met another boy about 30 years ago that did have a diagnosis of autism. I met him when he was three years old. When I pulled into his driveway, he said “You drive Chevrolet” which he read on my car. He was an amazing child who was able to read a newspaper at three years old. I knew him until he was about ten. Every time he saw me, he would say “Hello Mrs. Gregor. How are you today?” He was being coached by his teacher on how to be more social. My 11 year old nephew was recently diagnosed with autism and reading Kelly’s post about pacing will make me more accepting of that behavior. As I continue to learn about autism, I think there are other people I know and have worked with that may be high functioning on the spectrum. Knowing more about autism has made me a more understanding person.

I learned more about autism before Brahm was diagnosed when my youngest daughter, Nicole, did research comparing functional MRIs of children with autism to those without autism while playing a video game. She found that the children with autism had additional areas of the brain working and other areas worked differently while playing the video game. She always commented on how wonderful the families were. I find it amazing that parents who are already busy and overloaded took the time and effort to involve their children in her research for the sake of everyone learning more about autism. More research needs to be done so families with autism can get the best treatment for their loved ones. I think autism has been around a long time but more people are being diagnosed now and there are more treatment options, research, and hope for the future.

When Kelly asked me to write an article on the grandparent’s perspective on autism, I warned her it might be long and she said she would expect nothing less and laughed. I want to start by saying that all of Brahm’s grandparents, Jim and Birdie, Jeff and myself really enjoy spending time with all of our grandkids and help whenever we can. Being a grandma has been one of the true joys and blessings of my life.

We’ve been watching this story unfold in real time from the beginning, but reading Kelly’s daily posts has been both wonderful and emotional. When Kelly first told me about Brahm’s diagnosis before things progressed, I just thought his behaviors were like other little boys but more so. Now I know differently. I started reading and learning all I could about autism. I agree with others that Kelly should publish her posts to help others know and understand more about autism. It isn’t a physical disability that people can see so they think children are choosing to misbehave and might stare or make rude comments just because they don’t know.

Brahm is blessed to have a very special family to help him with his special needs and his family is blessed to have him as well. Because of the love and support he gets from his parents and sister, he will reach his full potential whatever that will be. I think Brahm having a diagnosis of autism has made his family more compassionate and understanding toward others. His sister, Lena, is like a third parent. When we have the kids over, she tells us when Brahm is doing something he shouldn’t or when we’re not sure about something, she always has the answer. Lena loves to talk and frequently answers questions to Brahm before he can answer. She is one of his biggest supporters and is always there to help him and aggravate him sometimes, too – typical siblings.

Brahm can light up a room with his smile but he’d love to use a flashlight, too. He loves any kind of lights and notices if one of our landscape lights is burned out. On the way over to our house the next time, he’ll ask if Grandpa Jeff put in a new light bulb yet. His memory is absolutely amazing for details on subjects he’s interested in. He wishes we had more fans (we only have one ceiling fan) and tells us we should get more every time he is over. Brahm loves listening to stories before bedtime. He loves music and singing. He loves anything chocolate. He loves stuffed animals. He loves to see how things work. When his grandpas are fixing something, he is right there to see how it’s done. He is an awesome builder of fans and can make them in record speed out of any building material or toy. He can spot things he is interested in that I’ve never noticed before. He used to love windmills (similar to fans). We walked with the kids to the neighborhood playground and he spotted about 25 windmills from 3 inches tall on mailboxes to large ones on front lawns. Who knew? He really is amazing. We will need to figure out how to capitalize on his talents.

I love that my daughter, Kelly, can joke, laugh, and stay positive (at least AFTER the meltdowns). She has many amazing stories to tell which always make me chuckle but also makes me love her even more. Sometimes Kelly tells me they’ve had a sh(xx) show at their house but she can still laugh about it. We had a sh(xx) show of our own when we watched the grandkids in December. We usually have so much fun going to the pool and the playground, doing arts and crafts, baking, etc. (If you don’t know about Kayla’s playground in Franklin, it’s wonderful). But . . . there was one weekend in December during a period where Brahm was more difficult with growling and hitting. (His medication has since been adjusted and it’s much better again). Lena wanted to sleep in the same bed with Brahm, which I know wasn’t a good idea because they don’t sleep. They both pleaded so I gave in – grandmas can be such pushovers. I was glad Lena was in the room with him this time. We have a picture above the bed with glass and fortunately Lena told us Brahm was swinging it so I took the picture down and put it in another room. Then Lena told us Brahm took the nail out of the wall and was poking holes in his sock with it, so the nail came out of the room. Then Lena told us Brahm stuck a bead up his nose from a little stuffed bear I had in the room. I asked Brahm to blow his nose only to realize he doesn’t blow out but only stiffs in, making matters worse. We found the bear was actually missing three beads. Brahm wasn’t in any distress so we sat him on the floor so we could keep an eye on him while we searched. Grandpa Jeff and I were on our hands and knees and found two beads right away but couldn’t find the third. We pulled the quilt and sheets off the bed trying to find the missing bead. While we were looking, he sneezed a few times but was still alright. We were going to take a trip to urgent care to have the bead removed but as I was remaking the bed and pulled the quilt off of the floor, there lay the missing bead which Brahm must have sneezed out. Yea – the urgent care visit was averted. Now when Brahm sleeps over, we strip the room of almost everything. Lesson learned. This time when Kelly and Nick came to get the kids, our smiles were as big as Nick’s when they drop them off.

As the grandma, I appreciate that we have the large duffel bag Kelly referred to in a post. I think Nick usually does the packing and we have everything we need which makes sleepovers easier for us. They pack a bag for his heavy blanket, which helps him sleep, a bag for his stuffed animals, noise canceling headphones, medications, etc. Brahm and Lena keep us hopping, both talk at the same time, etc. but we have the time of our lives. They help keep us young.

I’ve watched Brahm during therapy. Brahm works super hard every day receiving up to nine hours of ABA therapy a day since he was two years old to get where he is today. His therapists are amazing, truly caring individuals with a calling for the work they do and I am grateful for them. He has come such a long way.

The main thing I notice with Brahm are things aren’t always predictable and you need to adapt and change course in a moment. Parenting is always tricky and a bit of trial and error. Parents need to think on their feet, plan ahead, be patient, be creative to elicit the behaviors we want in our children and just do the best they can. Multiply all of this times ten and you might have some idea of the challenges Kelly and Nick face daily.

We were lucky to be able to go to Disney World with Brahm and his family in October. Kelly already shared the story where she was sweating bullets while trying to draw a fan in extreme detail on a small scrap of paper at the happiest place on earth when the weather felt like a sauna. I didn’t time it, but I’m guessing it took at least an hour for Brahm to express what he wanted and for Kelly to draw the ceiling fan to Brahm’s specifications, i.e., the correct number of fan blades, the post, the collar, the wiring, the switch on his bedroom wall, etc. He was having a meltdown and growling like a bear so it wasn’t easy to understand what he actually wanted. But Kelly got the job done and we made sure we didn’t lose that scrap of paper for the rest of the trip. We also have a lot of wonderful memories from the trip. Brahm had expressions of true joy with the widest smile during some of the rides and shows. While wearing 3D glasses, he was smiling and reaching out in mid-air to try to catch the things he thought were coming at him. It really was and is the happiest place on earth.

I have to say I can’t be more proud of the way Kelly and Nick have made their children the biggest priority in their lives. They stick together. Nick does a great job of keeping the household running while Kelly is at work. I wish things were easier for all of them and that they didn’t have to work so hard. But, it helps shape them all into the wonderful people they are. Brahm will be the best he can be because of the support he gets from everyone who loves him so much.


Grandma Kim

P.S. – Please enjoy a bunch of photos of Brahm and his grandparents and great-grandparents!

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