Frustration; it’s why I blog.

When I started writing, three and a half years ago, there weren’t many blogs about young adults with Angelman Syndrome. It seemed once your child aged out of school, they might as well have dropped off the face of the planet. I wanted to know, what happens next? So, I started writing about Jess, an older Angel, hoping that something I said would help another parent. By sharing our journey, the mistakes, the lessons, and the success, maybe, just maybe someone else would benefit. In our own way, we have been trying to pave a way.

At one time, there was little expectation for the Down Syndrome community. However, the parents pushed and questioned what they had been told was possible. By presuming competence and raising expectations, the perception with regards to abilities morphed into “anything is possible”. I believe the Angelman Community is following a similar path.

When Jess was finally given the correct diagnosis (at 13), she was taken off the educational track and the focus was on self-help skills. This was done with my knowledge, however, I was naive. I didn’t realize why the change until years later. I didn’t realize that the diagnosis caused the shift. I dumbly followed schools lead believing they had her best interest at heart.

Because communication is the foundation for learning, my main focus for this blog has been about AAC. These are the bullet points that you need to know:

  1. if you child isn’t able to communicate, you can ask the school for help, but most likely, you will need to research AAC apps and devices yourself. Be aware that SLP’s are not created equal and are not required to take courses in Augmentative and Alternative Communication. They learn after they graduate, on the job and many do this on their own time. Where once speech was about articulation, there’s a growing need for SLP’s to be versed in AAC technology.
  2. When asking for supports from school, put it in writing. They will kindly blow smoke up your butt making you believe action is taking place when it is not. Requests do not exist unless it is in writing.
  3. AAC evals are only as good as the person giving the evaluation. A two-week trial isn’t enough to know if the AAC is a match.
  4. If you succeed in getting an AAC device, insist that it comes home with the child. Consider the device a voice prosthesis. A child wouldn’t leave a wheelchair at school and come home without one and they shouldn’t leave their voice at school either.
  5. Ask for training, not just at school, but in the home too. You need to know how to support your child. How can they be successful with an AAC app unless you are able to model comfortably? You can’t just hand the child a device and expect them to talk and they especially need someone to talk to.
  6. Get the whole family involved. Get your friends involved. Have your child out in the community using their Talker. Share with those that have never seen an AAC app in action so they understand this is your child’s voice and not a toy. Not only will this help your child but will make your child’s world bigger because it will encourage acceptance.
  7. There is no such thing as too old to learn.

For Jess to have a voice and the ability to speak for herself, it has been life-changing. If you are reading this and are waiting for school, do me a favor. Stop talking for an hour or two and try and communicate to your family. Or go out into the community and try and get help. You will learn quickly how difficult it is to not have a voice. So how old is your child that isn’t talking, seven, twelve, eighteen? Do you think you could be as patient without a voice as they are?  If they’re acting out, then they have given you their opinion. If they aren’t responding, maybe they have given up. Jess was a combination of both. We are trying to make up for that now. It’s the best we can do. The point is, don’t wait for school.

I guess I’m writing about this because I’m frustrated. It saddens me when I learn schools do not follow through and let time go by.  Either it is due to ignorance or because they want to save their district money. This I know because I’ve had many teachers pull me aside over the years saying such. They’d share with me their concerns and how the administration has constrained them. I realize our schools are overwhelmed, however, you have to be the squeaky wheel.

Unfortunately, I didn’t learn all of this until Jess was about to age out of school. I was ignorant about how technology was changing, however, the SFY app wasn’t available to Jess when she was eight (though that first device worked initially, it soon became apparent it didn’t meet her needs).  I shudder to think what Jess’s life would have been like if we hadn’t found her voice when she turned 21. Fortunately, no child should have to wait that long anymore.

PS- I forgot to mention, even though I was labeled “that over-involved parent” and teachers were “warned” about me (told to me recently by one of Jess’s teachers), I didn’t buck the system till her last two years of school. Up until then, I followed the school’s advice. In all transparency, I was that parent whose child didn’t have a (reliable) voice when she was 18.

2 thoughts on “Frustration; it’s why I blog.

  1. Thank you for your blog, and for being so kind to give me your time!
    You have inspired me…already you have enlightened my life. Thanks ❤️

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