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SOMEDAY I'M GONNA DIE. WHAT HAPPENS TO MY KIDS?

CoffinBy Kim Stagliano

Ray Gallup, a dedicated autism dad, sent out an email this week with the obituary of a 74 year old woman who left behind a disabled son. 

Leila Simon's obituary moved me to write a piece for Huffington Post titled, Obituary: Kim Stagliano, 86, Leaves Three Autistic Children Behind.  I think people need to know how we inside the autism epidemic look at the future.

You can read the piece HERE. I'd appreciate your comments over at HuffPo.

Thanks.

Kim

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My son is almost 16 years of age, I am almost 38 yr old male widowed and often my mind goes into the unknown future, My best outcome thus far is to try to live as long as I possibly can and hopefully when I die he will be a very calm old man, People just dont know how blessed they are to have children with independent futures awaiting them, I really dont see the answer and the more I type the more helpless I feel, but I must say I am blessed and know that others have different problems are much worse than ours, its definately not a perfect world, as the song goes we are all just "Passing Thru"

If people think that Autism only affects the child and the parents they are wrong. Just last night we were discussing our 15 year old Autistic son. Time goes so darned fast, he will soon be 18. Knowing that our son will no doubt outlive us, we must begin to prepare for his future. As we discussed the prospect of having to place him in a group home someday our 23 year old son broke down into an emotional mess. Autism the gift that keeps on giving.
K Fuller

I have a very simple plan, which is that I will live forever. Maybe I'll find one of those Egyptian scarab things. Recently I read an article comparing "depressive realism" with "self-delusion". Although my natural tendency is towards depressive realism, I am really trying to work on the delusional thing. Optimistic people see a glass as half full when others see it as half empty. Self-delusional people see a glass as half full when it is actually 95% empty. Consistent with this outlook, I am envisioning four possible futures for my son:

- I will live forever, or

- He will recover both from his autism and his genetic Williams Syndrome and become fully capable of caring for himself and holding a job and living independently and making intelligent life decisions (even though at the age of fifteen he currently has a severe level of mental impairment including very impaired life & communication skills), or

- He will live in a wonderful group home surrounded by good people who genuinely care for him and never quit their jobs. His life will be happy and fulfilling, and all his expenses will be paid by copious Social Security disability benefits, or

- His siblings will care for him but this will be SO easy for them and will not infringe at all on their responsibilities for earning a living and raising their own families, and all his expenses will be paid by copious Social Security disability benefits.

Please, don't wake me from this dream or I might start to cry.

Kim,

I know the heartache of trying to grapple with my own son"s future " I can"t even begin to imagine what that must feel like x 3.

And your "babies" are so beautiful " which makes it even harder as a mom knowing that they will be at the "mercy of the care givers" (likely still earning minimum wage) who may not necessarily be the best equipped or trained to provide them the specialized care that they need.

In other words, "you get what you pay for" and I'm afraid that unless society "wakes up" and realizes the need to start valuing these children now and making the necessary adjustments, our children may end up in the hands of some pretty shady characters in the future.

Kelli

PS...Regarding bustlines and aging....for some weird reason, that department has gotten better for me as I've gotten older -- go figure!

PPS....What the he** is the "pencil test"?? I must have missed that in school (I went to an all girl’s high school) but it sounds like it could be fun :-)

Kim -- you're just too damn funny!


Kim - wow. I am sure that many adults just like David could tell the same story (if they could speak). It is something that I try not to think about. My son has a typical sister, but do I want her to carry the burden of caring for her brother when we are gone? Scary, scary, scary. Pray that the truth comes.

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