Autism and the ultrasound experience

Last week I had our son out to get blood work done twice in the same week. He hadn’t been sent for blood work since he was a toddler. So clearly he didn’t remember that experience and neither did I.

I showed him this video of a young man with autism who was going for blood work. I told him that the doctor was asking that he get this done.

He seemed fine listening the video. All he asked for was a hot chocolate as a reward after.

The next day I received a call saying he needed to go back in to get certain things rechecked with his blood because numbers were high, then I wondered how that might go for him being that it was a fresh experience in his mind. It went fairly well, but he was more nervous and tense the second time around, and also had a few behaviours that clearly showed he wasn’t impressed but he got through it. The nurse doing it the second time around wasn’t as relaxed around him as the first nurse, but the one that gently held his arm so he wouldn’t move was there the first time and she totally got him. So that was good.

Then I received a call from the clinic saying he needed to go for an ultrasound next, but don’t worry Mrs. McRae its nothing serious. I’m not even able to worry about this because there’s enough with my own health that needs attention. I trust things will be ok with him.

I knew that the ultrasound would be a lengthier procedure than the blood work. I wanted him to be even more comfortable, and prepared so he could do better and feel ok with it. I had to put my thinking cap on and see how was I going to tackle this one. I googled a video on youtube about getting an abdominal ultrasound. I found one of a young man getting this procedure done. Its well made, they showed everything in stages and very detailed for him to see. When I shared it with him he watched the whole thing and without a doubt I knew he understood what he needed to get done next.

Then I remembered that I could write him up a social story. Getting things written down for him, so he could see what to expect. They have always worked in the past when I have remembered to do them. This below is what I wrote for him in french, because that’s the language he has better comprehension. I’ll share below also in english so you can see what works for him. I don’t use a lot of images with him. He gets words, and sentences that makes sense to him. So I use his language. I allowed the video to show him the visual images that he needed. It’s nothing fancy how I do it, its just a visual of how things were going to happen. They are probably not a true social story (you can google that if you are curious) but this works for him. He doesn’t need each step broken down in tons of little details. If something in particular was harder for him, then I would break it down with more details so its more clear for him.

Now you may wonder why I’d get him to eat his breakfast at 4:30 pm. Well his eating schedule has really been all over the place, so I had to start with where he was at in his day. It’s not something I can explain in short form here that would make sense. I wrote him a short schedule, the times and what he had to do. Then I wrote from midnight until 8 am, he couldn’t drink or eat and that he had to sleep in his bedroom last night. Sometimes he likes to sleep on the sofa and I never know which nights he’ll do that or not. I knew that I had to sleep on the sofa last night, to make sure that I heard him if he came out of his bedroom during the night. Another thing we did, we turned the water supply off to the house. He doesn’t know that we are the ones that did this, just like when the internet stops working… we just tell him someone will fix it. So that worked to our advantage to help ease one thing in case he wanted to drink water. But it didn’t happen. He went to bed at 11:30 pm and slept throughout the night. When he woke up this morning, he knew what to do.

the french version I wrote for him…

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in english below…

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I woke him up around 6:45 am instead of the 6 am like I had written on his schedule and that was ok. He’s not that rigid that I couldn’t be flexible with this. It took him maybe 10 minutes to get dressed and ready. Mind you he didn’t have to eat or get much of anything ready to head out the door. But on those days where he has to go somewhere, with all the routines and preparation he has to do it’s always a 2.5 hour get him ready and out the door (some days closer to 3 hours). Its exhausting on the best of days. Patience, well that one’s almost always needed. But this morning, he knew. He had really understood what needed to happen. He had some extra time before we had to leave, so I gave him time on the iPad before we left. When it was time to go, he had a few things he had to do. Because of the OCD (obsessive compulsive) you can’t rush him. He has his ideas in his head and the sequence must happen at the speed he needs it to with whatever rituals are needed. He can’t skip those. When they are in his mind, no one can change his mind.

I thought we’d be late for sure, but we got there just on time. The clinic hadn’t opened their doors yet. So we stood in line up outside waiting. Often that’s when behaviours will start, when he’s got wait time or down time, but not this morning. He was very well behaved. I was grateful. Let’s just say parents of mis-behaved children will often get the look from some people who just don’t understand. Try visualizing this with a 6’1″ or taller young adult when suddenly the behaviour changes and there’s not a darn thing you have any control over. Not everyone understands. Not everyone is compassionate. But this morning he stood and was part of the line up with me. He wasn’t bringing attention to himself today. No one was staring. I can’t tell you how good that felt as I stood there with him, and didn’t feel judged or out of the norm. So I put a feather in my cap this morning!! 🙂

As soon as we walked into the clinic, he spotted the water cooler. Uh, oh!! I experienced a moment of panic, yikes! How I was going to handle that one? I had a piece of paper on me, so I sat down and asked him to sit with me and quickly I wrote out a message for him before he decided to test me by going to the water cooler… #1 see the ultrasound technician; then #2 drink water in a cup… #3 Friday, Ottawa shopping (his reward). He seemed fine with my explanation. He wasn’t up to testing me this morning. Thank goodness he got it and chose to not drink, because he wasn’t allowed to drink before the test was done. Phew!!

Half the battle was over already. He got through the night with no eating, and no drinking, out the door early this morning when he’s not a morning person. We had to be there for 8 am. When I saw the technician she looked serious. That’s one thing parents go through I’m sure, and not just me… we can prepare our child all we want, but we never know what awaits us at the other end. How the staff will be able to interact with our child. How flexible they might be. How understanding they might be. So I wondered if she was going to be the right person, the right fit for him? It didn’t take much more than a minute for me to see that she was a most incredibly compassionate person that had such a caring heart. Lesson learned, don’t make assumptions or judge. She was there clearly to work with the patient, not against them. When she asked him to take a deep breath and hold it. He didn’t know how to do that even though I had practiced it with him a little in case they did ask. When he gets anxious or stressed, I get him to breathe in and out with me slowly several times to help relax him, so that is what he was doing this morning instead of holding his breath in. But, she understood. Instead, she would follow the rhythm of his breathing and told me she was able to capture images of what she wanted that way instead. She made the whole experience so pleasant with him. She didn’t talk a lot with him which is good, because he can’t communicate like we do verbally and that annoys the heck out of him when people try to make him answer things that he can’t. She did her job, she talked minimally to him, which was perfect. She thanked him on the way out for doing such a great job, and he said thank you to her. He always does.

Being able to get a glass of water at the cooler before we headed out to go back home, was a reward of its own for him.

Another thing I did yesterday, on top of creating a schedule for him, along with the video, and the social story with details of what would happen… a friend told me why don’t you try surrogate tapping (EFT) for him. She had suggested that I try surrogate tapping (EFT) at each meridian using sounds, words etc that he might use during this ultrasound experience and before. So before bed last night I remembered to do it. I tapped into his energy, it didn’t take long that I knew it wasn’t me his mom talking, it was my son’s energy telling me what to tap on each meridian point. What was interesting, it was his energy expressing how he feels about me his mom, and how anxious I can be during procedures like this for him and how that affects him, and other things that get under his skin. So he was venting his frustrations, it was clear to me. So I wasn’t making that up. It clearly was his energy bringing that forward for me to surrogate tap on for him. All I could do was do the tapping to help clear some things on his behalf. Then I found myself saying simple words he would use, even making movements he would do as well if he felt frustrated or anxious. I did that too as I tapped along. It was quite an interesting process to do. I didn’t do this for very long just several rounds and then I unplugged from his energy and came back into my own. So to say that this process might have had something to do with the incredible success of this whole ultrasound experience, I believe without a doubt it did play a big part in making this go as well as it did. Talk about another awesome things that I was brought to that helped in so many ways.

Here Brad Yates shares about surrogate tapping and you can see one example… mine didn’t look much like his because my son’s needs look different somewhat. I’ll be using this technique again in the future. I also did tapping for myself to help clear any anxieties I had too.

When I talked to my Mom this morning after we got back home. I was telling her how well it had all gone with Mr. K this morning. She was so pleased. She said, finally God is giving you a break with something. I knew what she meant. But I also knew that God was making sure that I know what to do for my son so he can have more successes, and to make our lives also a little easier. God arranged to bring it all together… and it all paid off beautifully.

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Comments

  1. Gabriella says:

    Sometimes, we place these expectations on our kids based on past experiences, but are pleasantly surprised when they didn’t transpire as terribly as we had imagined. I am certain that all of the preparation helped your son. That was a heck of a lot of work, Suzanne! But, I also think his maturity, his comprehension, and even his curiosity helped him to follow along with greater ease than originally imagined! It’s amazing when that happens!

    I loved reading this recount of your experience with Kyle, Susanne. You describe all of the issues parents go through when preparing for an appointment from physically preparing for the tests to explaining what to expect to waiting time at the appointment, the procedure/ test, and all of the post stuff. It’s just fascinating that we don’t fall to pieces at the end of each day! (Well, maybe we do! lol)

    Wishing you and Kyle receive the results you’re hoping for from the tests. Thank you for being a blessing to parents by sharing your reality.

    P.S. That social story is indeed perfect and does not need images at all! It’s a perfect example of modifying to your child’s needs! You know Kyle so well — this is why it all went to smoothly. xo

    • Its amazing what happens when we tune into our kids and their needs. Thank you for sharing Gabriella. I appreciate hearing from another parent who knows exactly the amount of work and efforts it takes to do even the simplest thing with them. xo

  2. Mary Dowdy says:

    Kyle,
    What a wonderful job you did on getting your ultrasound the other day.
    Suzanne wonderful and a great job done!

    A wonderful shopping trip to Ottawa for Kyle for a job well done. I am so proud of you.

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