A few people have asked when I knew my son was different from other kids.
Depending on the day, I'll tell you that I knew he wasn't a typical child when he had his first seizure at 13 months, or after the twins' disastrous one-year check-up that left my husband & I in tears, or when the occupational therapist started her visits at 5 months, or when my son couldn't fixate his vision at 3 months, when he wasn't smiling on time or when he had his gassy, colic, non-stop crying fits. The truth is, I always knew he wasn't typical, even when I was pregnant. I recall the ultrasound technician proclaiming "Baby A: perfect! Baby B: o.k." at pretty much every appointment.
I've only just recently (like, last month) got over the denial and accepted that my son is not like other kids and never will be. I went through a long denial phase, one where I *knew* something wasn't right but then felt smacked with guilt for even going there. I felt guilty because he is alive, here with us and that should be enough. I shouldn't have to want more, I should be grateful for what I have. I am grateful and I love him with all of my heart and being but I still want more.
I want more for him and (surprise) this isn't all about me. I want my beautiful boy to have the best life possible and be provided every opportunity available to him. I want family members to get to know him, to meet him and to love him (and his sister). I need to be an advocate for him, I need others to advocate for us. Being in denial and not wanting to think about his diagnosis is selfish and my son deserves so much more.
I'd like to tell his story here, to start at the very beginning. Hopefully you'll want to read about him if I promise to keep it short. :)
