November 11, 2011

She’s baaaack, well sort of

The wicked witch of the Roaring Fork Valley has retired for the year – or should I say semi-retired?

Alex has returned – or should I say semi-returned?

Alex is a very intuitive and sensitive person. She understands nuances and has a great sense of humor. But just like most people with down syndrome Alex is developmentally delayed. Sometimes she comes across as a mature and completely together 18 year old, but mostly she comes across as a less mature 18 year old.

Alex is often not socially appropriate and likes to hang out with adults more than her peers. Given her peers are teenagers I can't say I blame her. This year I have noticed a difference in maturity with her classmates. As they fill out college applications and start to absorb the responsibilities they have as almost adults, they have grown. Alex's classmates are genuinely nicer to her this year, but they are also talking about opportunities Alex may never have - driving a car, going away for spring break without parents, and going to colleges with their friends. Right now this is not Alex's future, but it certainly could be in a few years.

Alex knows she is different than her peers and has difficulty voicing her fear of what this really means. Food and music are her solace and I am her nemesis. I watch her eating like a hawk and often remind Alex in a loud voice about being healthy. I will not let her play music late at night, especially after her teacher told me she fell asleep twice in class. We went to the doctor about this sleepiness (just in case syndrome) and Alex will undergo a sleep study in Denver as people with down syndrome are susceptible to sleep apnea.

Alex is filling out two college applications and I can feel her anxiety. These applications are easier than those of her peers, but they are still hard. Alex is perfectly capable of doing the applications, but has been reluctant due to the length. The other day Alex told me one of her friends got an acceptance letter from a college and she wanted one to. I wisely responded she needed to fill out her college application for that to happen, and I believe we are back on track.

Football season is over and those few hours every afternoon where Alex felt welcome, included and important are gone. This has been replaced by play practice and the stress of learning 27 line and articulating each and every word. Alex is working with her speech therapist on her lines and comes home every night and practices. She was the first actor to go "off book" and is determined yet anxious.

We have been talking about relocating to NJ for Alex's school, to find a job and to be close to my family. So, I have been going back and forth in search of a job. Hopefully, I will get something soon and relocate, as a job is very important for our family right now. John will join me when Alex and Tom finish school in June. My periodic absences, as well as John's becoming Mr. Mom, have really unglued Alex. Any deviation from her schedule and change in her family structure take a while for Alex to adjust to – and I have not helped.

Yes, Alex is a witch these days and I do not blame her. I often wish she could process her feelings and emotions in a more mature way, but she is not there yet. I wish we did not have to relocate and exacerbate Alex's anxiety, but we do.

So many things I wish for about Alex, but then I sit back and realize these are not important. What is important is who Alex is and the light she brings into our house every day.


  1. Sounds like your family is going through a difficult time. Do you talk to Alex about things that will be happening? We've found that sitting down with Beth and telling her, "On this day, such and such will happen." "During this month, we will be selling our house." We've found it gives her time to process the situations, ask questions if needed and even offer to help, without being asked!

    I'll be praying this transition is a smooth one.

  2. She must be so scared. I noted her Thanks for parents who hug alot and am wondering if she is worried about your leaving or you guys separating?
    Love and hugs on this difficult journey...


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