Saturday, January 14, 2012

Hanging my head in disbelief.... HELP AMELIA!!!

Read about Amelia Rivera's story, Kidney Transplant denied.

I cannot believe, that in this day and age, that a child is being denied a life-saving kidney transplant due to her cognitive disability ("mental retardation"). But that is exactly what is happening to little Amelia Rivera, a two-year-old little girl. She is in need of a life-saving kidney transplant, and just a few days ago, her parents were told that the transplant would not be happening because their beautiful little girl, Amelia, was ineligible due to her mental delays. Not because she was in too poor of health, not because there wasn't an available kidney (her family has a family member match), but because she has cognitive delays.

How is any of this even a question? A child needs a transplant, and if a donor can be found, you give it to them? Mental delays or not, it's still a child.... someone who deserves a chance at a life.

The doctor who told these parents that their child could not receive a potentially life-saving kidney transplant because she was deemed ineligible due to her mental delays (or in his words mentally retarded) should be absolutely ashamed of himself and humiliated. Children's Hospital of Philadelphia should be ashamed of themselves.

What's even worse? This is apparently a common theme amongst a lot of hospital here in the US, and that's just wrong in so many ways. This makes me cringe. Ashton is not classified as mentally retarded (intellectually challenged), but this makes me wonder if we ever found ourselves in a situation such as this, would he be denied for the same reason?

THIS HAS TO CHANGE! Please sign the petition located HERE, to show CHOP and everyone else that us as Americans will not stand for this.

Thank you and Good Night all!

Thursday, January 12, 2012

Thankful Thursday

Today, I am thankful for such wonderful groups like Surfers HealingCamp Gonnawannagoagin, and the many, many on-line support groups that I/I've belong(ed) to over the last 10years or so since Ashton's diagnosis.

Groups like Surfers Healing and Camp Gonnawannagoagin allow Ashton an opportunity to experience things that a "normal" (for lack of better words) child would, in a loving, engaging, and safe environment. The surfers and volunteers of Surfers Healing are gentle, gentle souls. You wouldn't expect these macho, sporty guys to be so gentle and kind with these special kids, but wow! Big, ole, amazing teddy bears! We've met a lot of awesome people within the Surfers Healing community, both in real life at the Virginia Beach camps as well as online via their Facebook page(s). Ashton's already looking forward to Surfers Healing Virginia Beach 2012! How COOL is it that he gets to surf with a REAL surfer, not just a family member who can "kinda" surf? The smiles and calmness that he gets to experience is amazing and awe-inspiring. Camp Gonnawannagoagin is a much needed source of respite during the summer months. Ashton gets to go to camp from 9am-3pm every day for 5 days straight. They go swimming every day (pool, beach, water park) and they do one other activity (mini golf, arcades, aquarium, Tae Kwon Do, etc). Each autistic camper is paired up with a typical peer buddy as well as an adult counselor. The social growth Ashton experiences every summer is amazing. The things he gets to do (Ocean Breeze, Tae Kwon Do, etc) are not things that I've done with him, but he LOVES them! It gives him an opportunity to experience camp and social outings, without Mom always having to be there.

The support groups have been numerous over the years. From online support groups to in real-life support groups to our family and friends. But they all serve the same basic purpose. To allow the opportunity for discussion of issues, different coping strategies, the ability to see Autism through another family's eyes, etc. But, they give you the opportunity to vent about the struggles or the opportunity to celebrate the small (or to us, large) victories that other family's that have only neuro-typical children wouldn't otherwise understand.

SO thank you. From me and my family to ALL of you!

Monday, January 9, 2012

Case of the "Mondays"

Did you know that there's an official affliction called .... the "Mondays"?

Ok in all seriousness... it's not official, or even a real affliction, but boy, it seems that it's running rampant amongst my fellow autism families today. And yes, it's Monday. The first full week back to school for many kids. (Last week was a shortened week).

Ashton wasn't "bad" at school, but he refused to come to group for any of his lessons. So therefore, he didn't get to bring a DVD home from school, and *that* my friends, made him mad mad mad mad MAD!

He apparently had a complete and total meltdown. Screaming down the hallway, etc. But, the school handled it but the teacher called me to ask me what she should do. I said DO NOT under any circumstances, send the movie home with him. He's smart enough to know what he did (not do work, the guidelines were very clear: come to group, participate, do your work. If not, no choice of DVD to take home). The sooner we make that very clear for him, the sooner he will realize that "hey, I want that movie, I need to do my work".

And honestly... he's been fine since he got home. He went to his elective and to PE this afternoon after the meltdown and did fine.

So, it wasn't a horrible day .... just one where Ashton (hopefully) learned a very valuable lesson. Do your work, so you can have the reward. (and really? we're asking for a 50% participation/work completion ... that's not too hard for him, since he did it 2 days last week).

So - here's hoping for a better Tuesday!