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Staying the distance

March 23, 2020 by Mary 6 Comments

Keeping to ourselves is "a walk in a park" for usSocial distancing? We have been doing this for years. This wasn’t exactly our choice but kind of came with the territory. When your child isn’t typical, people naturally distance themselves from you. This natural weeding process allowed for the cream to rise to the top and that is a good thing.

To those special teachers, therapists, caseworkers, and job coaches who by luck or by chance, were drawn to us, I want to thank you. Your time and effort have been life-changing for Jessie and I am grateful. As much as you were Jessie’s champions, the skills you shared have helped me too

We are taking advantage of this time to work on her life skills beginning with dressing. Either she is independent or she isn’t. My tweaking her (sports) bra (because easily gets twisted), or pull up her pants so she didn’t leave the house with plumbers-butt has to stop. Of course, she will need to pass inspection before leaving the house, however, there’s no need for me to be hands-on. Struggling is part of the learning process and we are both up for the challenge.

The only verbal prompt needed for dressing has been, “go back to your room and don’t come out until you are dressed”. Unfortunately, upon closer inspection, I realized she didn’t put on any of her undergarments, so she had to start over. The first few times, this took at least twenty minutes, however, her best time is now around eight. We are using the backward chaining method. This begins with modeling, followed by verbal prompts, then visual cues. Jessie has been doing a lot of the work herself, however, for some reason, I didn’t complete the final step of fading back.

The rest of our day we focus on chores; walking the dogs, moving laundry, and preparing meals to name just a few. Though I prefer to get jobs done quickly, I’m not stressing about it. For Jessie, all of this seems novel. Just wait till she realizes that housework is our new normal!

When the warmer weather arrives, I’ll have Jessie make lemonade. I’d like her to enjoy the fruits of her labor. In essence, isn’t this what we are doing now while staying the distance?

Who knows, maybe margaritas will be in order, along with a side of chips and guacamole. One thing I know for sure, we will be toasting all those special people who helped us along the way. 

Cheers!

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Comments

  1. Janice Block says

    March 24, 2020 at 8:41 am

    Congratulations on the dressing skills! I am very impressed. I am curious, and maybe you get this question, what genetic type of AS does Jessie have? It’s just because there are so many variants these days, and different levels of functioning. My Allison was discovered to have the mutation type. She cannot dress independently, but one step at a time! I will share these photos with her, Jessie is her role model 🙂

    Reply
    • Mary1991 says

      March 24, 2020 at 9:19 am

      Jessie wasn’t diagnosed until she was 13 (she is now 28). The test confirmed my guess but it didn’t give us the detail that most families seem to have. I didn’t know to ask to pursue a more comprehensive test. It takes 3-4 people to draw blood from her and I haven’t been able to get a doctor to agree to run the test again. We just live the adage, try, try, and try again. Sometimes this means attempting daily, monthly or revisiting a couple of years later. As a parent, it is so easy to get in a rut and keep helping, however, when we break down the task and work one thing at a time, this has helped. Her fine motor control was practically non-existent when she started with her AAC device but attribute 99% of her success to mastering being able to isolate a finger. Then we were able to work on hand strength, and then we were able to work on using both hands together. It’s a long process and she would have been better served by a parent who had more skills. The best thing I can suggest is to keep working at building skills.
      How old is Allison?

      Reply
      • Janice Block says

        March 24, 2020 at 11:16 am

        Allison is 28. I didn’t recognize you from the Angelman listserve I joined after she was diagnosed, so makes sense that you did not have diagnosis yet. She was diagnosed at age 5-6; with “suspected” angelman by age 3.5, negative genetic test at that time (ruled out the classic deletion type), new test UBE3A became available and we were convinced to go through with it (even though we were 100% convinced AS was the diagnosis)–it is interesting there seem to be various forms/levels of functioning–Jessie reminds me of Allison when I saw the videos on youtube, but seems to have higher fine motor skills–although persistence obviously pays off! We need to up our expectations a bit, I think. Thanks!

        Reply
        • Mary1991 says

          March 24, 2020 at 12:49 pm

          We missed out on Listserv. Jess was given a cerebral palsy diagnosis. Once they define,
          they don’t question it. A year before Jess was to age out of school, we pulled her out and had her finish her last year at the Arc, a sheltered workshop. The man that was running
          the program took a special interest in her and worked with us as a job coach. We then were
          able to hire a job coach at home. She had an AAC device since she was 8? I now forget, but not until she turned 21, six months before aging out of school, did we find her current AAC
          and that motivated her to work on her fine motor skills. We revisited stacking blocks and all sorts
          of fine motor activities, however, what worked the best was a gum ball machine. She did not have
          the hand strength to turn the crank, could pick up a coin but not manipulate it for the machine.
          M&M’s motivated her to work at this and she gained the skills needed. We finally had to take the machine
          away.
          I had read about Angelman when Jess was a toddler but I didn’t understand that there was a spectrum. Based on the child I was reading about, I dismissed that as a possibility.
          Yes, keep raising the bar. Last year, Jess learned how to buckle her seatbelt! THis is HUGE! 🙂

          Reply
  2. April Newman says

    March 25, 2020 at 8:02 pm

    As always, thanks, Mary Kay and Jessie, for the encouragement of someone far down the road ahead of us. You inspire to keep my goals high.

    Reply
    • Mary1991 says

      March 25, 2020 at 9:24 pm

      Just keep chipping away. Jess had a ten-year plateau and then something clicked. It was a combination of our pushing her and her being ready. She had so much failure, she stopped trying and we had to convince her she could do it. The one thing I did do was never stopped talking or asking questions. She may not have been giving me answers but I know in her head she was. With any kid, we don’t know what they will achieve, so presume competence 🙂 Thanks for letting me know you are there! Be well.

      Reply

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