January 24, 2012

Come home Mom!

I have been away from my family for two weeks and it has seemed much longer. I fly home to Colorado tomorrow to get Alex and come back to NJ for Alex's fist college interview! Yes, Alex's hard work on her college applications has paid off….her excitement is contagious (as is mine!)

While I have been away Alex has been a great communicator, calling or texting every day. I checked with her case manager and Alex has not had any meltdowns at school, which is unusual when her life if disrupted for a few weeks. Instead she tried out for the school musical, was awarded a role, and has been helping her father around the house. Another bird is ready to fly our nest.

But Alex is not all sweet and loving, she is also manipulative and cunny when she wants something – just like her peers. The only difference, Alex's ask is a lot less veiled than her siblings.

The following appeared in my inbox after a lovely phone call consisting of "I love you" and "I miss you", and I am sending you an e-mail.

hi mom
Here is also i want this soon before you came home
thanks- Alex B- OOOXXX

The e-mail contained two pictures.

The first was a card holder for Pokémon cards. For some reason Alex is still a collector of these ridiculous cards. Perhaps she knows more than me, and they will one day become collector's items, Alex will become wealthy, buy her own house and one for her parents……

My suspicion is Alex enjoys working with the cards and creating her owns games where she can always win. She is control of the characters, and unlike in her daily life, she can create situations where she is the hero. This attraction to Pokémon cards bothers my husband and son and I catch a lot of grief for supporting this. Some battles I fight, some I do not – only time will tell if Alex really grows up to become a ninja warrior.

The second, the secret journal. Alex loves to write and create stories that correlate to what happens in her life, and these stories have a heroine named Alex (or something very similar). Once again, I have no idea what DS specialists would say about this, but I feel it is a productive way for Alex to share her feelings in a safe environment.

As Alex has gotten older she has demanded more privacy and knows when she leaves her journals around the house her snoopy mother reads them. How else would I know her deepest and darkest secrets? But just like her siblings, Alex deserves her own space. The journal I will buy, the Pokémon card carrier is on hold.

As Alex grows, learns and matures I am so proud of her accomplishments. I get email from across the world from other parents, and mostly those with younger children wondering about their future. I am not an expert in anything, but I do l know given the right supports, a belief in the impossible (college) and advocating for our kids anything is possible. Alex is now an active advocate for herself and although adulthood, housing, and employment loom ahead of us, we have come so far.

Tell me, how many people out there can text, surf the internet, cut and paste pictures from the internet into an email (obviously not me, I could not get them into this post) and then call their Mom to say they love her and by the way check your email? Alex can, and she has down syndrome. Would I have believed that 18 years ago? I know that answer – it is no.


  1. We are so proud of Alex and look forward to hearing about her college interview. Will you guys be in Chicago for Noa's Bat Mitzvah? Hope to see you then.

  2. April loves to text me and was doing it last night from the movies! I finally figured I'd better stop repying or she would miss the movie on the screen:) Can't wait to hear how the college interview goes.

  3. That is so cool and heartening to hear! Exciting!!! Someday you will be on the east coast, hooray!
    As for the journaling and cards. We all have so little we really feel in control of and each of us, if we look closely, have small habits that bring us in to a space that soothes because it gives us some small feeling of control,often just daydreaming, blogging,solitaire etc. Kayli loves to self talk in the bathroom as she gets ready for bed- we love to listen to her narrating her stories, bits of her day, her movies, music, small dreams. I don't know- for me I see it as healthy and normal- just perhaps more transparent and visible than my own process.
    hugs and well wishes Gary.


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