I have a blue light. It is one of those energy saving bulbs that lasts what seems like forever. It has been in my outside porch light for a good 4 (maybe more) years now (and yes, I did notice that there are plenty of dead bugs at the bottom in this photo – that’s life.)
One Halloween about 4 years ago (maybe 5) it was my turn to host the annual Halloween/Trick or Treat party for DC and his friends. We would still be giving out candy so I wanted to find a bulb that would not interfere with the lights and decorations I had put up, as the regular porch light bulb would.
I rummaged around and came across an old bulb from back in the day when I used to Light- it-Up Blue. The porch light is not easy to change and if the bulb works, I am not changing it. There it sits – four (or maybe 5) years later. Obviously, I do not turn my porch light on all that often for it to last that long.
We did not have Autism Awareness when DC was young. We did not have World Autism Day, so when Autism Awareness started to become a thing, I was all for it. I naively believed that the awareness would encompass all of the spectrum. If your child happens to fall somewhere on the spectrum other than where the characters that we see on TV fall, you are not allowed to speak about it. Don’t get me wrong – awareness and acceptance is a necessity but some of us need more.
As I get older and DC gets older, I worry more and more about his future and his safety (don’t worry, I am not going to rehash all of my fears for the hundredth time). Awareness is/was necessary though. It brought us more programs into school systems and more understanding and hopefully, acceptance of the students. Awareness has done next to nothing for some of our children as they become adults.
With funding for the disabled being one of the first things to be cut in every budget, even some of those school programs are going away now. I have already said that DC, after all of the people I have put in place as guardians after I am gone are gone, will have to live in a group home. What if there is no funding for that sort of thing when I am gone? What if everything I have put in place falls apart due to these cuts or due to one little miss-step? What would have happened if our whole Social Security debacle happened after I was gone? (A debacle that turned out to be Social Security’s fault, but they were perfectly willing to take his benefits away, knowing full well that it was their fault – this is a 3 part-er so if you are interested, start here). Who will be there to fix it all for him? Will he be out on the streets or institutionalized? He would not survive. He is in a staffed day/work program right now. He loves it. What happens when their funding gets cut (as it does every year)?
April is a very depressing month for me now-a-days. It really is. Please do not tell me that I am undervaluing my son’s life by saying that. I am not in any way.
He is happy.
You should be so happy.
I love our life.
He loves his life.
I would not change a thing about him, except for his future.
I worry for his future and it is not for you or anyone to judge a parent, any parent who is just worried for their child’s future. His future is not your future, it is not your child’s future, you cannot compare.
I do not disparage those that are celebrating. I do not disparage the associations/charities they choose to support or not support. I do not disparage Autism Awareness at all. I am glad there is push for awareness and acceptance, but it needs to encompass everyone and we need more – much more.
So I will just continue on my way, writing stories – some with humor and some not, some about progress made and some not. But through-out those stories, it should be apparent to you just how much I love this “boy” and how proud I am of him every day. If it is not in your face apparent in one or two; all I can say is that everybody has a bad day once in a while. I will continue to write about DC and our life just to raise awareness to another side of the spectrum. I will continue to call and email my representatives whenever the threat of more cuts are in the air. I will continue to plan and research other methods of making sure he is safe and taken care of.
So yes, I have a blue light. It is left over from Halloween, 4 years ago (maybe 5). It may be turned on if someone is stopping by after dark, but it means nothing other than the fact that I am just too lazy to switch out a perfectly good, working light bulb.
I am glad there is an awareness day and an awareness month. I am glad it has also become an acceptance day and acceptance month.
We need more.
We do. And all we can do is keep on trying. Tomorrow is another day, another chance.
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I get it, I used to. I just don’t feel it anymore. I will never stop trying, though. Thanks for commenting.
Sigh. Yes. All of it. We are all in our own autism worlds. So many variables of the things that keep us up at night. And I dare say, this may be the one common thread regardless of belief or value system in our disability communities we can all agree…
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It doesn’t always seem that way…..
Well I bet the blue light is pretty. The bulb in the picture certainly is. Since you and I have been listening to the West Wing podcasts, I’ve gotten to the part where they talked more about autism after the episode where they “called the grandfathers”. Even though this month makes you sad and you didn’t have nearly the support that people have today, it sure is wonderful how much has progressed in 16 years since that show. Aside from the doings of current administration…. 😦 #icanteven – I hope we don’t lose 16 years of advancement over politics.
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The current admin definitely adds to the sadness #ICantEvenEither – I remember that episode well and yes, there has been some progress – now we have to extend it to adults.