It's no surprise that we have always allowed ourselves to dream big for Ayden Jane. Maybe in a way, that first endocrinologist who told me - my problem was I needed to learn to accept that Ayden Jane was a special needs child and stop trying so hard - did me a favor. I mean, Ayden Jane gets her "just tell me I can't" attitude from genetics other than the PWS region.
So we went on our merry way helping Ayden Jane achieve as close to her peers as possible. She learned to read... with a little extra effort. She kept up in school, with the support of awesome teachers who recognized she could learn but sometimes took an alternate route to solving math problems. Ayden Jane would talk of going to college like her siblings and I imagined she would, but likely community college where she could still be home with support. She talked of becoming a veterinarian (like most girls her age) and I could totally see her as a vet assistant.
You get the picture. All wonderful success that could lead to her being able to be happy, productive and independent eventually. Or at least, independent enough that she would not be a heavy burden to her siblings one day. You know, needing one of them to check in with her and help her out at times, but not the 24/7 care that we were told would be necessary. That was a dream nearly unthinkable for kids/families with PWS even 5-10 years ago.
Those were the dreams we HAD for Ayden Jane.
I catch myself now, with Pitolisant, dreaming all new dreams for her. Although the dreams of the past were wonderful, I now catch myself dreaming, expecting that she will go away to college if she chooses. That she will be anything she wants. The limits I put on my dreams for her - not that she ever had any limits for herself - have been lifted.
Why the change? She operates so much closer to the speed of life now. The pause, the step behind she always was, is gone. It will take time to learn how to use her faster brain and there is still catch up to happen, but even others are noticing. We have said goodbye and good riddens to "the stand and stare." She is engaged and a part of all that is going on around her and not just an outside observer gleaning all she can but unable to do so fast enough to truly be a part.
So we went on our merry way helping Ayden Jane achieve as close to her peers as possible. She learned to read... with a little extra effort. She kept up in school, with the support of awesome teachers who recognized she could learn but sometimes took an alternate route to solving math problems. Ayden Jane would talk of going to college like her siblings and I imagined she would, but likely community college where she could still be home with support. She talked of becoming a veterinarian (like most girls her age) and I could totally see her as a vet assistant.
You get the picture. All wonderful success that could lead to her being able to be happy, productive and independent eventually. Or at least, independent enough that she would not be a heavy burden to her siblings one day. You know, needing one of them to check in with her and help her out at times, but not the 24/7 care that we were told would be necessary. That was a dream nearly unthinkable for kids/families with PWS even 5-10 years ago.
Those were the dreams we HAD for Ayden Jane.
I catch myself now, with Pitolisant, dreaming all new dreams for her. Although the dreams of the past were wonderful, I now catch myself dreaming, expecting that she will go away to college if she chooses. That she will be anything she wants. The limits I put on my dreams for her - not that she ever had any limits for herself - have been lifted.
Why the change? She operates so much closer to the speed of life now. The pause, the step behind she always was, is gone. It will take time to learn how to use her faster brain and there is still catch up to happen, but even others are noticing. We have said goodbye and good riddens to "the stand and stare." She is engaged and a part of all that is going on around her and not just an outside observer gleaning all she can but unable to do so fast enough to truly be a part.
This is amazing! <3 Keep on posting her success, makes me feel very optimistic about my sons future.
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