Can’t get over how big he’s gotten. Just wanted to share a little smile today. This is Andy how he usually is – smiling! Missed the date but as of January 24th he has been off of insulin now (takes glyburide pills) for 9 years! My how time goes fast.
I knew I loved Jamberry nails long before I even tried them and long before I decided to sell them. Part of what I love about the company is that they are all about giving back to people in need. They carry certain wraps called charity wraps that they donate $2 from each sale to that charity. Now, for a limited time they will be teaming up with the Now I Can Foundation to raise funds for families in need.
This foundation, based in Utah, helps children overcome some of their disabilities through the use of intense physical therapy. Children often come to their facility for 3 or 4 week sessions of therapy. With 4 hours of therapy for 5 days a week, children can reach goals that would normally take them a year to achieve.
Obviously this can be very costly and insurance doesn’t always pay for all of the expenses. So Jamberry nails has created a charity sheet that will be sold from December 3rd through December 31st. For every sheet of wraps sold, $2 will be donated to the organization. This will be used to help fund grants for families in need of financial assistance to receive these therapies. Please consider supporting this wonderful cause that is close to my heart. I don’t know if this is something that would benefit children like mine, but it may be your child or someone you know that could. Help these children reach their fullest potential.
You may order these wraps starting December 3rd at my Jamberry site. Christy’s Jamicures
Here is a picture of the wraps on hands.
Anybody who has a child on the spectrum or with SPD probably took one peak at that title and shook their head in understanding. “Yep, my kid does that too” you’re saying. Sometimes I look at Andy and just think, if only he could talk like a normal kid, he would probably be a genius! He is such a little scientist. I love to watch him work sometimes and try to see things from his perspective.
It was maybe just a year or two ago that I started really trying to notice what he was doing. What the autism community calls stimming (repeated self-stimulating behavior), I call him being a mini research scientist! Having that in my bones (and wanted to act on that someday in the future), I started approaching my view through the lens of a researcher. What is he thinking? What is he trying to figure out? What scientific phenomenon is he discovering today?
I think it started with the tower of pillows. Now, he’s been doing this off and on for YEARS! In fact, I remember when he was around 5, we were creating a PECS system of cards for him and the therapist asked what some reward activities might be and building towers of pillows was definitely one he enjoyed. It got its own picture card. He loves piling the pillows up on top of each other as high as he can possibly go, climbing up to the top of the tower and then crashing down to the couch and burying himself in between the pillows. This is what we call in the Sensory world, a seeking behavior. He is seeking heavy input. At times like these, he is in need of the pressure of the pillows around him. Maybe because he is having a hard time feeling where his body is, so crashing into a pile of pillows gives him that input he so desperately needs.
Eventually, he got hurt one time as he grew taller (seriously, what are we feeding this boy? He’s going to turn into the Green Giant!). We put a stop to the towers of pillows because it was getting dangerous. But then he discovered BOXES. Towers and towers of boxes. Now I know that most kids can build towers with boxes and you may be saying what is so special about that? What is amazing to me is that, when the boxes have been played with so much that they start falling apart, he still has some uncanny ability to layer them on top of one another, move them ever so slightly, getting them to balance precariously, just so. And voila, he has a tower of 6 or 7 boxes that would make an architect proud! I mean, sometimes, the towers he makes would put the Leaning Tower of Pisa to shame. Of course, the whole point of the tower is to make it crash, which gives him that “controlled” loud noise that has always brought him so much joy. I love hearing that boy laugh. He has always been such a happy child.
Lately he has been back to doing the towers of pillows again, which is fine by me because I know he is just needing to get some input on his body. He is having trouble with being aware of his body so he needs that to help him feel his muscles and feel where his body is in relation to the world around him. So we let him and just take it with a side of caution, making sure he’s not hurting himself. Maybe it’s because he is growing so quickly right now. We haven’t quite hit puberty yet, but by the way he’s eating, we must be getting close to the raging hormones so maybe he’s feeling a little unorganized or unsure of himself. So the towers are back and he’s as happy as ever with the building and crashing. Hey, at least it helps him sleep at night!
What do your children to for proprioceptive input?
This is an overdue post. We’ve now been in the Cincinnati area for over a year and we have been slowly getting the kids settled into their new team of doctors at Cincinnati Children’s. After meeting with the endocrinologist, neurologist and neurodevelopmental specialist, we decided to start the full testing for Katie. Since she was about to turn 6 and was entering Kindergarten this year, we thought it was time to get the ball rolling. We had suspicions of ADD/ADHD and of course knew about the speech and cognitive delays. What we weren’t sure about was if she would test on the Autism Spectrum. We had also started seeing some eye fluttering and she also lost her balance one day while trying to pull her pants down to go potty, so we scheduled an EEG just to be sure.
So off we went to a regular speech evaluation, an ADOS (Autism Diagnostic Observation Schedule) speech evaluation, an ADOS psych evaluation and an EEG. Overall, based on my own observations, I thought she had some pretty good imaginative play skills and not a lot of stimming behaviors. While I do see the sensory processing problems with her, I have never thought that her skills were on the spectrum. Ultimately, the doctors decided to go with the diagnosis of ASD and Intellectual Disability. Her Developmental Pediatrician explained to me that, though they know her delays and sensory issues are caused by the genetic mutation, giving her the diagnosis of ASD opens up therapies, grants and insurance payments that might otherwise be unavailable to her. The doctor explained that she has enough of the markers to place her in that category. Of course, as a mother, I had to have my good little cry on the way home from that appointment, but I finally accepted the fact that it does open up services that she needs to move her forward.
As for the EEG, she was having Absence Seizures. The data showed that for the 45 minutes that they were monitoring her, she had several seizures. The doctor agreed that there was enough evidence that waranted her starting medicine. She is now on 4 ml of Ethosuximide (generic for Zarontin) to help control her seizures. We haven’t seen any side effects. One benefit that has been associated with this medicine is that she is finally sleeping through the night almost every night now. Whether or not that is an effect of the medicine, the result of increasing her glyburide, the seizures stopping or just getting older, it’s hard to tell, but we’ll take it!
So to summarize, Katie now has full-blown DEND syndrome, a diagnosis of ASD and intellectual disability. However, we are seeing an increase in her speech and a decrease in her melt-downs, but that is for another post.
What kinds of diagnoses does your loved one(s) have? Were you surprised? Dissapointed? Relieved? Feel free to share in the comments. I love to hear about what other people are going through.
If you are a parent of at least one child on the spectrum or with SPD or motor delays, you will no doubt relate to this story. When I see other children outside playing in their yards or close to home I get jealous sometimes. I admit it would be nice to just tell my kids (much like my own parents did) to “go outside and play until it’s dark”. Alas, this is the world I live in now and that is not my reality. But when you have a nice, 60° cloudless day in the middle of November, you get the itch to take advantage of it. No matter how many times you’ve been battered by the “getting ready monster”, it is easy to forget on such a lovely day.
So as I finished a call to Granny and Pappy, Katie asked me in her cute little voice, “go for a walk?” how could I turn that down?
“Go get your socks and shoes Katie”
“OK” and she starts running around to find her socks and shoes that were discarded earlier in the day.
Five minutes later, we have 2 socks and one shoe. I get up and start searching and finally find the lone shoe on the shelf in the coat closet.
“Katie give me your foot.” (she offers the foot and retracts it just as quickly. This goes on for about 20 seconds before I finally grab the foot and hold it tightly with one hand while I try to wrestle the sock on her foot).
This time I just grab the foot and hang on for dear life as she plays a “Hoakie Pokie” type of dance with me.
Two minutes later, finally both socks are on. I’m sweating at this point.
No problems with this one. On in record time with it tied in a double knot. We’re making progress!
No such luck. I get the shoe on and then the “Hoakie Pokie” leg starts again while I try to tie the shoe.
Five minutes later and Katie finally has both shoes on.
Now I have an even brighter idea! “Andy, do you want to go for a walk?”
“Go get your socks out of the bathroom.” He runs to the bathroom and grabs his socks. Coming into the living room, he drops them on the floor and continues to play with his balloons.
At this point, Katie pipes up, “Take your shoes off?” and proceeds to take shoe #1 off.
I tell her, “if you take it off again, we won’t go anywhere!” I’m contemplating putting Andy’s shoes on first before trying to fix hers, but I do it anyway.
Ok, Katie has both shoes on.
“Go get your coat.” I say to her. At this point I put both of Andy’s socks on and his shoes as Katie is running around getting her coat and dancing to the music we are playing.
After 5 minutes of tugging and pulling, pushing and tieing, Andy’s shoes are on and he is back to his balloons.
Now for coats.
Katie picks up her coat and says, “need help please”. I help her into her coat and then proceed to wrestle with her zipper as she leans back, pretending the coat is a swing for her to launch herself away from me. Zipper in (it’s not locking), zipper out. Try again. Zipper in, this time stuck on mismatched teeth. Zipper out. Finally turning her around with her back to me, I successfully get the zipper locked and pulled up.
Is anybody else feeling like this is an aerobic activity just to read the post?
Ok. Finally! After about 20 minutes, all three of us have shoes and coats on and we went for our little walk around the block.
For the most part, it was a nice walk. The kids held onto my hands and I even let Andy walk independently a couple of times. But the walk wasn’t without it’s own comic relief. Several times, Andy decided he was done walking so he just fell out. Just sat down on the ground and refused to move. Oh, for the love of God. You have to laugh so you don’t cry. And to cap it all off, the end of the 25 minute walk, we were “attacked” by a swarm of gnats. Not the best thing for a sensory kiddo like Katie who freaks out about anything that even remotely looks like a fly. Screaming and crying and begging to be picked up ensued.
Was it worth it? You bet! I got in (according to my Fitbit) 23 minutes of physical activity, some much-needed vitamin D, and some quality time with my kids.
Tell me about your own stories with getting your kids ready. I know I’m not alone.