Here’s my card

IMG_0743Perhaps we met at the market or at a social event. Maybe you have a friend or family member who has a child that has a disability. Either way, there are things you may like to know and that is why you were given a card. Here is the 411:

Jess has Angelman Syndrome. This inhibits her from talking, but not from understanding. She uses an app on her iPad called Speak for Yourself for her voice.

When you meet a disabled person, speak to them directly, not to the person that they are with. They may not look at you eye to IMG_1343eye. This does not mean that they can’t see, hear or listen. This does not mean that they are “in their own world”. In Jess’s case, she takes information in all at once instead of in little pieces.

When someone uses a device or a picture book to communicate, this is referred to as  AAC (augmentative and alternative communication).This is much slower than talking.  When someone uses AAC, give them time to find their words and please don’t finish their sentences. Just because someone isn’t talking does not mean that they do not understand.

She's self described herself as Exceptional!

She’s self-described herself as Exceptional!

As for parents like me, I know you don’t know what to say. Comments like “I don’t know how you do it”, or “it takes a special parent to raise a special child” may be well-meaning, but we don’t hear it that way.  I will try not to roll my eyes when hearing these phrases.

My child may not be perfect, but she is in my eyes. Jess is kind, pretty, people smart and has a great sense of humor.  She may not change the world, however, the world would be a better place if it took the time to get to know her.

The following are a few posts that share more of her story:

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Jessie and George

Thank you for taking the time to learn about Jess. Hopefully, if you meet another person with Angelman Syndrome, you will have a better understanding, as well as meet other people that use AAC.

PS- if you have questions, please feel free to ask.

 

 

 

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4 thoughts on “Here’s my card

  1. Pingback: Let me introduce myself, here’s my card | You Don't Say

  2. “My child may not be perfect, but she is in my eyes. Jess is kind, pretty, people smart and has a great sense of humor. She may not change the world, however, the world would be a better place if it took the time to get to know her.”

    And yes, that does give us lots of things to share and talk about.

  3. Hi. I just found your blog!! I loved reading the story about Jess. It gives me hope, which I need. My son is 11 and dx with Autism and seizures but I think he may have AS (trying to get him tested). He seems to meet the criteria. I have to ask, how did Jess progress? You mentioned that she has progressed a lot the older she got. What did you do? what MD’s/therapies did you try? She’s a beautiful girl and my prayers for her continued improvement.

    • She is a work in progress. Between the seizures and the side effects from the meds this slowed her down. If one thing is off with her, it’s hard to get her to focus. Her biggest progression came late. School didn’t really know what to do with her. Many things happened at one time so it is hard to say what exactly helped, however, the first piece was finding her the right AAC. Once she could communicate, it reduced her anxiety. Being understood is so very important. We also had a job coach her last year of school who came to the house. In reality, they were training me how to support her better. We broke jobs down to the smallest task. For example, we had her feed the dog. There were at least 8 steps to this. She needed help organizing her motor planning. We also had to work on her fine motor skills and we did this through play. We revisited building and stacking blocks. used a gumball machine and other activities that helped with her coordination and hand strength. When things are difficult to do, it’s easy to want to give up when you don’t have success. This is where I had to be retrained. I helped her too much.
      The outside (of school) therapies weren’t very successful. Would have been better to not run around to appointments and spend that time playing at home.
      From the beginning, I’ve always held both sides of our conversation. Just because someone isn’t talking doesn’t mean they aren’t listening. I believe she was answering me in her head and following along. Sometimes her eye contact is good and sometimes it is not. She uses eye contact to get my attention when there is something she wants and she uses it when she finds the word she meant to say on her Talker after a miss hit. When I’m mad at her (which happens on occasion) part of the punishment is not to look at her. She then makes a point of putting her face into mine to let me know she is sorry. Of course, I’ve never forced her to look at me. I realized long ago that she takes information in differently.
      With the label of developmentally delayed, I assumed this meant that delay meant she would do things in her own time. This is where presuming competence comes in. In her own time, with support and patience, she is doing well. However, I have to stop myself and not help her too much.
      Our goal is to have her be as independent as possible. She’s 26 now and she is still learning and growing.
      They are never too old to learn… I think what happens is people stop teaching.
      Even if you get an AS diagnosis, in many ways it won’t change what you are doing. When Jess got her diagnosis at 13, they took her off the educational track. I think they did this because of what they read about Angelmans. This was a mistake. I will attribute Sesame Street for teaching her to read. She is able to sight read, doesn’t’ read for pleasure.
      Focus on every little success and don’t look too far down the road. 🙂

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