January 17, 2012

where's Waldo

For those of you who remember the where’s Waldo craze about the fictitious traveler who could never be found, these days we call it the where’s Alex craze.

Alex is 18 and active and engaged in the community. Although she still prefers the Disney channel over almost anything, with a little enthusiastic suggesting (bribing) Alex will do anything. She is our adventure girl, up for any last minutes excursions, and particularly those that involve social interaction.

So, where has Alex been?

Alex worked at the Treehouse at Snowmass Mountain over the winter break, the childcare facility for families who come out to Snowmass to ski over the holidays.

Alex was in the room with the three year olds and by all accounts was a great help. She was so sad to leave four of her young charges she spent an entire day making gifts for them. These gifts were photographs of her, which she took from this blog, saved on her computer and printed on nice paper. She then mounted on cardboard, signed each one with “you will always be in my heart” and glued three paper tubes to the back so the masterpieces would stand up.

I did not assist Alex in anyway, she showed me the gifts when she was finished. Alex’s technical skills are as good as her siblings, and better than ours in many ways. As far as her thoughtfulness, she rivals no one in our family.

Alex had her last IEP meeting. Each year when we have Alex’s annual meeting we ask for the team to come. This year it includes four regular education teachers, her aide, Alex’s case manager, the School principal, the basketball coach or director of athletics and the director of Special Education for the District.

This year for the FIRST time ever everyone came, except the basketball coach and director of athletics. Suffice it to say Alex is not playing basketball this year, she was clearly not welcomed, and every conceivable wall that could be built to prevent her from playing was built. Sometimes John and I have to pick our battles and this is not one I can fight based on last year’s total lack of support from the basketball coach, principal, director of athletics and the district. I hope this is not the case for future young athletes in our district it is a great opportunity for all involved. Alex will be running track in the spring, thanks to the inclusive track coach, who is also her history teacher.

This was BY far the best meeting ever. Alex is on track to graduate with an academic diploma and will be going to college. Requesting an academic diploma is a personal choice, it prevents Alex from staying in the public school system and receiving transition services, but that is a choice she made, and we support her. The school supports her in everyway.

Alex’s team is BY far the best ever. Everyone genuinely supports Alex and wants the best for her. This year she does not have a revolving door of aides, she has one who “gets” Alex. Her teachers were all given a document with Alex’s strengths and weaknesses as well as her IEP goals, and how they apply in general education classes. This is a first for our school district and a direct result of grievances that were filed against the school by another family last year. A bit late for Alex, but I can feel the change and the commitment from the district. I also hope that my six years of advocating and pushing for Alex have made a difference for younger children.

And finally for now:

Alex is texting me constantly as I am back in NJ looking for opportunities. Alex professes to love me more than anything in her texts, but also likes to fill me in on her activities. I love the constant updates as well as the technical skills she has. Her last text was a picture she took from her computer and sent to me showing me one of the many things she “needs” when I return next week.

Alex is everywhere – she is skiing, babysitting, studying and most importantly for her singing in her room. I am constantly amazed by her fortitude and smarts, what a gift down syndrome has brought to our family.


  1. Hi Alex!

    Just drinking a slushie/slurpee now. What's your favourite flavour, if you have one?

    They're all over Glee.

    Great work at Treehouse - sure the three-year-olds appreciated your thoughts. And they will in time!

    The last IEP meeting and the academic diploma are fantastic. Hope you have a wonderful spring season.

    (We've seen various examples of how the aide gets Alex this academic year so far, and last?)

    And, yes, I remember Where's Wally, very well!

  2. Such fantastic news! Glad the IEP meeting went so well. Alex sounds like she knows what she wants and is going after it. Good for her!


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