I wanted to introduce my amazing son, Ian, who is about to begin his 6th year at WISH. I thought I’d share some info about him so you are prepared to help enrich his life and assist in supporting him throughout 5th grade.
Ian loves to sing, laugh, read and be silly. You’ll often encounter him sharing the passages from his favorite books or songs. Asking for a “sniff”, a “shiver” or a “dizzy” will happen all the time, especially in times of stress. If he acts like he’s sniffing you and says something like “disgusting” this is nothing personal. He thinks it’s funny to say this. You can suggest “you smell nice” as an alternative. Quite often he will say he’s “freezing”. This does not mean he’s cold, he’s asking you to act like you are shivering because, again, it makes him laugh. If he’s cold he will ask for a sweatshirt ;)
His favorite games are chase (including saying Duck, Duck, Goose while tapping his and your head, acting as if you are “wobbly & woozy” and anything else really silly that makes him laugh and is a great distraction when stressed.
During distance learning, he sat on a yoga ball, pretty much the whole time, except when he wanted to lay on the floor, which I know he can’t do at school.
We use “First, then…” a lot! Ex… “First finish this Khan lesson, then we can do a sniff or a shiver.” I always make sure to have some way to count down the number of equations. (Or sentences we are writing, or words we are spelling, etc.)
I always give choices. Even as simple as should we begin with the left side or right. What color should we use when we are doing math equations. Do you want to sit on the right or left side of me. Etc.
He loves math! He can skip count 1-12. He’s great at addition, subtraction, multiplication and division. He just often gets them mixed up and has to be reminded which one he’s working on. It’s very helpful to use the fact family board that’s in his backpack. Using the white board and as many support charts as possible is how he was successful during DL.
For writing, he might need picture prompts and questions about them. And for reading, he can read, but it’s better to read to him, if appropriate. Or if on Epic, the “Read to Me” is great, again, if appropriate. If you ask him to read to you, make sure to ask him to slow down if he’s mushing words together. For comprehension questions, if he doesn’t get it right the first time, I try to go back to the passage, read/play it again, and then go back to the question and ask him again.
A wonderful skill he has is to take a breath when stressed. If you model it, he will most likely do it, or you can ask him to do it as well. The best way to ensure he gives you your space is to cross your hands across your chest and ask for “space please”.
He’s very in tune with his feelings. We used the Mood Meter during DL. If he’s sad or frustrated, I try to reflect his feelings and then move on. “Wow, you are so frustrated. I’m sorry. Let’s try this a different way.” Suggesting, “You can let me know if you need a break.” Is good too. It’s helpful to time the breaks so we would get back to the task at hand. We also have a figure 8 breath chart we use for calming down or before a task which requires more focus.
If you don’t understand what he’s saying, just ask him to slow down or to type it on his Green Talker (green iPad).
He will let you know if he has to go to the bathroom but it’s good habit to take him at the end of lunch. He can do everything on his own except for wipe after a bowel movement. I’m sorry to ask this of you, but if you can do this for him that would be great. If you give him toilet paper and ask him to wipe, he will do the motions but not get in the area of need. But it’s good to ask him each time.
He loves collecting things such as pens/pencils, crayons, or anything that looks like “sticks”. Also any type of tiles, blocks, marbles, etc. Since we have been learning from home, one of his fav things is to collect all of these things and push them under our bed. Often he will pull them out, play with them, and then put them back as if it’s his storage place. When he’s outside, he enjoys playing with/in rocks, sand, dirt, leaves, or anything else that is of, or connected to, the earth. If this becomes an issue in class, you can try saying “It’s not time for sticks right now.” Or you can find some that he can carry around and make sure he has those with him when in need. While all of these things are not convenient, doing this provides much needed sensory feedback for him.
Socially, connection with his peers is so important. Whenever possible, working with peers on activities that can be done that way would be great.
His favorite TV shows are any of Thomas & Friends shows/movies, Word World, Cat in the Hat, Numberblocks, Alphablocks and Little Einstein’s. The favorite movies are: Rio 1 & 2, Frozen 1, Curious George Back in the Jungle, The Gruffalo, Sneetches/The Zax/Too Many Daves/What Was I Scared Of (A Dr. Suess Series which are books but also have had movies made of them) and, of course, any Thomas movies.
If you happen to know the names of any Thomas trains that would be a great way to connect with him. He also can, and will, recite the words to the following books: The Gruffalo, Room on the Broom, (these following Dr. Suess books) Fox in Sox, The Cat in the Hat, Sneetches, Too Many Daves, The Sleep Book, What Was I Scared Of?, The Zax, and Green Eggs & Ham.
He loves when people join him in singing, songs from Frozen (“In Summer” or “For the First Time…”) or songs from Rio.
On the medical side, he’s had quite a difficult journey. The list is extremely long but his primary diagnoses are: Megalencephaly Capillary Malformation (M-cm), Bilateral Perisylvian Polymicrogyria (PMG) and, Autism. I kept a blog solidly for the first few years of his life is you’d like some background. Of course, it’s easiest to say he is Autistic as he presents in that way and most people are familiar with ASD.
I’ve listed some of the ways I have answered questions over the years:
“He’s had a rough beginning and still is working on catching up."
“His brain works differently than yours."
“Everyone has their strengths. You know how you are amazing at xx and yy, well Ian loves math and to spell.”
“Ian is a very loving guy and doesn’t always understand personal space. The best way to ensure he gives your your space is to cross your hands across your chest and ask for “space please.”
By sharing some major accomplishments, I can illustrate how far he’s come. We try to focus on his progress rather than his challenges. When he left the NICU, he was fed primarily through his gTube, now he can eat more than most kids ;) This is another condition where he might steal preferred foods & could eat a whole table of pizza or a dozen bananas without stopping. His gtube fell out for the last time at 3 and we never put it back in ☺ For the first 2.5 years of life he needed 24/7 supplemental oxygen. His last O2 study in June released him from any required use of oxygen, even on airplanes, which was his last pulmonary goal. He took his first completely spontaneous independent steps on his 3rd birthday, now he goes “fast” across the yard. From the time he was 2.5 until 3.5 he lost all sounds besides a grunt. Now you will hear him singing and exclaiming from many classrooms away.
On a more advanced side, he has been able to read and spell since he was 3. He would take the letters in the bath and spell out words tricky for even his older sister (by 3 years). We don’t know what happened to his sounds but after we gave him a “voice” back via an iPad with Proloquo2Go, he showed us he had so much to say. At the same time, his verbal sounds began to return, and we have worked on one letter sound at a time since that day.
We know he is an extremely bright and aware child. Our goal is to enable him to share all that he knows with the world. Academically he’s in a good place. He really wants to socialize but has trouble working out how. This is our main focus this year at WISH. Here is where we could really use your help. If your children come to you with questions or concerns, feel free to share what you feel is appropriate for your child. And it would be great to encourage them to try to connect with him when they get a chance.
To be honest, we do not know the potential of this remarkable boy. But we will continue our quest to reach it, as every parent does. There are no limits we will place. We will continue to work with him at his pace and challenge him all along the way.
Thanks for letting me share his story. I also have been keeping a blog since placed in the hospital before he was born http://mommapod.blogspot.com/ Please feel free to ask my questions along the way shariabercrombie@gmail.com 310-699-7621.
Some of the things that he enjoys and get him through activities are:
A “sniff” and say things like, Gross! or Disgusting!
A “freezing” where you act like you are super cold
“Wall pushes” we found an empty wall and did push-ups against it. Every time I’d go down into the wall, I’d do a “shiver” or a “ewwww”
“Wall squats” - again, an empty wall but it has to be somewhat smooth as he needs to have his back against it, his feet shoulder width apart, and slide down into a sitting position. And, again, when he gets to the sit, I react with one of his silly sayings.
“Icky sticky’s” these were like knee lifts standing in place. Again, when knees are up, silly sayings.
“Duck, duck, goose and run” - head taps between he and I with the, duck, duck, etc. and when it’s goose, one of us runs in a crazy pattern. Then it’s the turn of the other person to run.
“Chase” this is, as it sounds, one of us chases each other. Mainly it was me chasing him. I usually needed to encourage him to “run” (he’s still working on his run but has come a long way)
After he completes a task, I share specific praise, such as “great focus on your math”
He just loves anyone to act really silly around him.
We do a lot of hi-fives but not sure how that will work at school.
Reading books is his favorite quiet activity.
I’d prefer these to be used instead of free iPad time as it allows him to get more regulated and hopefully it will help with focus.
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