I thought that maybe this blog could be an update on what life is like for Elizabeth currently.
I know that the holiday time can bring back memories and that was the case for me as I looked at this wonderful young lady who once was a little girl, struggling with her disorders, but made sure to get those cookies ready for Santa. Or that now, she calmly opens up her gifts on Christmas morning while before she cried from the anxiety she had during holiday times. I thought a lot about her life, how hard she has worked and how proud we are of her.
Her two disorders, global dyspraxia and sensory processing disorder (SPD) still affect her life everyday but as much as the SPD was the bigger issue when she was younger it is now the dyspraxia that seems to really play the larger role in her day to day life.
The resounding theme of her days is INCREASING INDEPENDENCE
Elizabeth wants to do things independently and makes no bones about saying as much practically daily but it is her dyspraxia that affects her ability to perform the tasks and life skills to allow this to happen. And not always is it a motor skill that is the struggle, since dyspraxia has hidden signs, it can affect her ability to organize the steps to do a task, to initiate the task and to remember the steps needed to finish the task.
So remembering the steps needed to go online to pay her credit card bill, something that independent adults do, is hard work for her so we accomplish the task together.
The same goes for writing checks and working on her budgeting skills…again, we are working on it.
She uses the supports we have in place, such as a notebook that has in it the steps needed to complete certain tasks/skills but no one book can have it all in it. So, we rely on lots of talking, reminding and chatting to help her as well as take the time to do a weekly, color coded schedule that she can use to help herself prepare for her days.
She knows to keep a battery pack in her backpack to use if her phone dies, but needs help remembering to keep it charged.
She has a “go-to” person for any place she goes. Meaning someone, and they know who they are, is the person she would go to for any and all issues. We review the go to person each time!
We put supports into place, remove them when we can, readjust them again….
Something we know is that nothing remains the same, so our eyes are on the current day but also trained to see a few steps ahead to be alert to anything that needs our attention.
Elizabeth is 22 years old now and loves things typical for a young adult such as music, time with friends, shopping, going out to eat, exercising and of course a trip to the local coffee shop. She loves going to her college program and loves hanging out with her buddy/coaches who are with her while she is on campus.
She wants to learn to drive but there are many steps that need to happen before she can begin that process and one of them is that we, her parents, need to take some seriously deep breaths and look at the reality of Elizabeth behind the wheel with her dyspraxia. Which can challenge her depth perception and her reaction time. Again, the desire in her is great but the reality is a bit different.
Her days are filled with going to her college program, her time at her internships with preschoolers ( her love), her part time “job”, her friends and of course with her family.
She is still one of the happiest, most content young adult you will come across.
She give wonderful hugs and looks so deeply into your eyes when asking if you are ok today.
She still makes us pause to look at the rainbows and sunsets and tell you she loves you about 50 times a day.
As we end the holiday season and begin the focus on her next semester, I am taking a deep breath and focusing on the goals that she wants and that she can achieve….in her time frame and her way.
If anyone has any comments or questions about what we do for Elizabeth, please email me and I would be happy to talk.
I wish everyone a peaceful month.
Michele Gianetti author of:
I Believe in You: A Mother and Daughter’s Special Journey
Elizabeth Believes In Herself: The Special Journey Continues