I have been a lazy, relaxed, slacker summer Mom and I enjoyed it! Sometimes it is necessary for our family to be us and take a vacation from down syndrome. It rejuvenates all of us.
Our summer was easy, we had no real routine and took things as they came. We traveled a bit and enjoyed the great weather. Alex went to camp, volunteered and sang a lot with her IPad. This was great for us, but challenging for Alex, the human calendar. Alex always needs a plan.
Like almost all people I know with (and without) down syndrome, Alex loves routine and knowing what is next. Transition can be tough at times, and spontaneity only goes so far in her life. During her school years this was easy, Alex knew her schedule and was always ready for her transitions.
During Alex's school years we kept a calendar on the fridge with the kids’ weekly schedule, Alex checked it every night and made any edits (things I forgot) that needed to be made. There was no calendar on the fridge this summer, and although Alex had her schedule on her phone, there were no visual aids of the family plans. This caused her to retreat to her room a lot and without a plan Alex self isolates, which in our family is a proven method of social regression.
I was not a total slacker (as hard as I tried), and Alex and I did work together to plan Alex’s gap year. Over the summer we talked about the following goals for the gap year:
- Weight loss
And because I am not a total slacker (big bummer), the following gap year plan was recently ratified:
Alex needs to lose weight. She has committed to monitoring her food intake and we are working on counting calories. I have created a refrigerator chart where Alex documents her food choices and calorie count by meal. The lesson here is portion control and healthy eating. Alex has lost two pounds so far, and has learned how to google food calories on her phone.
We had a few work/internship opportunities come up over the summer (okay I asked local merchants) and Alex decided to pursue one of these. She is working (paid) at the local pizza restaurant (300 calories/pepperoni slice) one day a week with the hope she can increase her days.
Volunteering is very important to Alex, it makes her feel like SHE is contributing and she gains a lot of self-confidence. Alex is helping out at WindWalkers with two friends once a week.
I must admit speech was on my list not Alex’s. To me, this is the most important tool Alex has, and the need for working on speech never ceases. We have asked her wonderful speech therapist from School to work with her one afternoon a week. When I win the lottery we will increase this to twice a week.
Like her peers Alex is a life-long learner and has looked over the local community college class schedule. At this point she is interested in art and music classes, and steered away from academics. Unfortunately for us her definition of music is saxophone lessons….maybe has something to do with all that hot air?
Yes Alex, the plan is in place and you will shine, just like you always do. All you needed was to know the plan.
8/31 South Korea
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