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April Light It Up Blue events?


Walking-Iris
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Okay, I may get totally flamed for this, and unintentionally offend people, but I just need a safe place to express what's been bothering me lately.

 

My oldest ds has Asperger's (his dx was PDD-NOS at first and recently a neuropsych felt Asperger's was a better fit).

 

Also as a college student I worked for three summers at Frost Valley YMCA as a camp counselor in the mainstreaming camp (part of YAI in New York). So not only am I parent of a child on the ASD spectrum, I have spent entire summers 24/7 with up to 16 girls and 16 boys with autism, Downs Syndrome, and various other SNs.

 

So I understand a bit about the issue.

 

BUT....the awareness campaigns slightly annoy me. At least here, locally.

 

There is a huge effort in my county and surrounding counties to collaborate on various "awareness events."  Art exhibits, balloon releases, a picnic, free portraits, free movie screenings, painting business fronts blue, handing out light bulbs, handing out puzzle pins etc.

 

Every year there is this virtual flurry of activity BY adults who either have an autistic child or don't. There's photos posted of the "Light It Up Blue" displays.....but no photos of the children, teens, or adults locally with autism.

 

No autistic child, teen , or adult is a part of the dialogue of organizing these "feel good" events. I've seen efforts to get groups of school children or Girl Scout organizations involved...none of them autistic children.

 

Every year I feel the same cynical- ness about it. And the same guilt. I have an autistic child, I should care a lot about this, right?

 

But April comes, April goes, and then all I hear are crickets the rest of the year. No one cares anymore. There still isn't a support group (and there have been numerous efforts), a doctor who is knowledgeable, or services available. It takes a ton of effort on local parents' parts to find medical professionals or therapists who can help long term. 

 

The special needs resources in our local schools are sub par. 

 

I guess I feel like my child, having autism, is a reason for someone to feel good about themselves every April?

 

I just have a hard time understanding what blue lightbulbs, and painted storefronts one month out of a year, do actually?

 

I think it's great to get people aware of accepting our children, teens, and adults, and I can definitely see how AAM helps with that....a bit.

 

BUT...it annoys me (at least locally...obviously I have no idea what other communities accomplish) that April (and the weeks leading up to it) feels like a time to talk "about" my child and others like him...not "to" or "with" him.

 

I really hope I haven't offended anyone. I just need to get that off my chest. 

 

 

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In our area, blue lightbulbs are to show support for law enforcement officers.

 

And all autism awareness events I've seen have been primarily for raising money - I'm not sure exactly for what - research?  programs?

 

:grouphug:  :grouphug:  :grouphug:

 

In my area any money raised is for funding next year's awareness efforts. 

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I can understand how you feel. Here the local events are quite good. We have a great local autism association which always has some sort of awareness event. The events they put on do seek to educate the community about autism and normally they raise money for the support programs they provide for families and also for their autism lending library.

I just find the whole thing odd to navigate with ds.

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I just want to say that I LOVE your post. I liked it but that wasn't enough.

Okay, I may get totally flamed for this, and unintentionally offend people, but I just need a safe place to express what's been bothering me lately.

 

My oldest ds has Asperger's (his dx was PDD-NOS at first and recently a neuropsych felt Asperger's was a better fit).

 

Also as a college student I worked for three summers at Frost Valley YMCA as a camp counselor in the mainstreaming camp (part of YAI in New York). So not only am I parent of a child on the ASD spectrum, I have spent entire summers 24/7 with up to 16 girls and 16 boys with autism, Downs Syndrome, and various other SNs.

 

So I understand a bit about the issue.

 

BUT....the awareness campaigns slightly annoy me. At least here, locally.

 

There is a huge effort in my county and surrounding counties to collaborate on various "awareness events."  Art exhibits, balloon releases, a picnic, free portraits, free movie screenings, painting business fronts blue, handing out light bulbs, handing out puzzle pins etc.

 

Every year there is this virtual flurry of activity BY adults who either have an autistic child or don't. There's photos posted of the "Light It Up Blue" displays.....but no photos of the children, teens, or adults locally with autism.

 

No autistic child, teen , or adult is a part of the dialogue of organizing these "feel good" events. I've seen efforts to get groups of school children or Girl Scout organizations involved...none of them autistic children.

 

Every year I feel the same cynical- ness about it. And the same guilt. I have an autistic child, I should care a lot about this, right?

 

But April comes, April goes, and then all I hear are crickets the rest of the year. No one cares anymore. There still isn't a support group (and there have been numerous efforts), a doctor who is knowledgeable, or services available. It takes a ton of effort on local parents' parts to find medical professionals or therapists who can help long term. 

 

The special needs resources in our local schools are sub par. 

 

I guess I feel like my child, having autism, is a reason for someone to feel good about themselves every April?

 

I just have a hard time understanding what blue lightbulbs, and painted storefronts one month out of a year, do actually?

 

I think it's great to get people aware of accepting our children, teens, and adults, and I can definitely see how AAM helps with that....a bit.

 

BUT...it annoys me (at least locally...obviously I have no idea what other communities accomplish) that April (and the weeks leading up to it) feels like a time to talk "about" my child and others like him...not "to" or "with" him.

 

I really hope I haven't offended anyone. I just need to get that off my chest. 

 

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I am also subscribed to some sites on facebook that agree ----- I like to see both sides.  I will see if I can find some. 

 

Hmmm.... I am not sure which pages I have liked show them!  But I see them.  There is also, kind-of separately, a thing for people who do not like "scare tactics" put out by some organizations, "autism is so scary" type stuff.  Then there is stuff where ---- the awareness seems to be feel-good but not involved autistic children or adults very much.

 

Our local autism walk is very local.  The proceeds go to help fund a local summer program that is an inclusion program, and includes spots for children with autism, ADHD, and also peer models.  It is supposed to be very good ---- we decided not to send my son this year b/c we think he will do better to just go to pre-school for another month, but in the future it is a great option to have available. 

 

When we went last year, it seemed like half the kids there might have autism.  It was a nice time!  Definitely I felt like I didn't need to be embarrassed about anything. 

 

I know some people who really like the blue lights, thing.  I know one person who puts it on facebook, and she has 30+ people doing it, who might seem to have nothing to do with autism, but are supporting her son.

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I think it is awesome that there are communities who do stuff every April where the actual children are involved, and there are activities and such for them that are meaningful. I know that exists. I just don't see it here. 

 

Here it very much feels like a "fluffy feel-good" experience for a few individuals. It's just a collection of loosely organized, random individuals with random ideas.

 

My dh was just talking about it today. We run a local printing home business and we have someone coming this afternoon to pick up "beer huggies" for Autism Awareness month. !!!!! Because that....is useful....how?

 

I'm under the impression this person just plans to pass them out to various friends, acquaintances.

 

We were talking about how they'll come pick up and pay for their order, and if they even knew our oldest ds has Asperger's, and if we told them...would they care? Why would we tell them? For what purpose? "Thank you for asking us to order and print your beer huggies, it means a lot to us!" um....not so much.

 

So yea! Someone can just have a beer and what....be "aware" of autism? I just don't get it!

 

 

 

 

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This is more broad than your original question, but I have a bit of a beef with nearly all "awareness" campaigns...they aren't very broad. What about kids who don't have autism but need special services? Okay, let's walk for cancer; that's great. But why does breast cancer get all the news? How often do you hear about rheumatoid arthritis, which is just one of many potentially crippling and financially devastating diseases that someone suffers with for decades (and possibly even for life)? If you have arthritis, it's not really talked about--just keep going. If you have breast cancer and survive, you are labeled a survivor for life. Yeah, it stinks to have cancer, and I would freak out if I were diagnosed. The possibility of relapse hangs over your head for years. But, if you regain your health, you can go on with life--that is often not the case with people who have arthritis or another auto-immune condition. They don't necessarily experience remission, and the disease is not necessarily fatal (though it can affect vital organs, lower immune function, etc.).

 

Is it possible to care about a specific illness while simultaneously encouraging awareness about others in many ways, not just the obligatory one that fits your family, etc.? What if your family is too busy living with the reality to participate in "awareness?"

 

A nearby city sponsors a walk for children's causes. You can sign up to walk for whatever cause strikes your fancy. I've never been to the event to comment on how well it's done, but I like that a single event, once per year, allows people with many various concerns to all come together. You can support your pet cause while also seeing and being with others who are there to support what they are passionate about. Sounds like a possible win-win.

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I suppose the awareness posters, etc. let folks who are dealing with a condition know they aren't alone and point them to resources they might not otherwise know about.  I know DS was interested to find out that there were enough kids with his issues that they have a whole month about them. 

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I suppose the awareness posters, etc. let folks who are dealing with a condition know they aren't alone and point them to resources they might not otherwise know about.  I know DS was interested to find out that there were enough kids with his issues that they have a whole month about them. 

That would be good if they actually did help with resources. I do like in theory the idea behind big things, such as the local courthouse lighting it up blue, but the more I research it, the more I find products. It's not as big as pink products for breast cancer, but it's slowly heading that way.

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I don't want this to come across as flaming you, as I don't mean it that way at all.
Just my perspective after a hard past year.
Today is National Cerbral Palsy Awareness Day.
There is almost nothing out there about it.
Much of the information that is available is outdated and incorrect.
The one CP blog that I follow - and normally love - didn't even have accurate information about the form of CP my son has. (Her information on ataxic CP was wrong and she was lacking important info on muscle tone variations.)
I really get not appreciating autism awareness. But at least it is getting some awareness. You say autism and people have a general idea of what it is. Mention CP to the general population - even pediatricians, for that matter - and it is blank stares.
I think any awareness is better than crickets chirping, which is what we are getting right now.

Edited to add: you didn't offend me at all. I do get what you are saying. It is hard no matter what the diagnosis.

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I don't want this to come across as flaming you, as I don't mean it that way at all.
Just my perspective after a hard past year.
Today is National Cerbral Palsy Awareness Day.
There is almost nothing out there about it.
Much of the information that is available is outdated and incorrect.
The one CP blog that I follow - and normally love - didn't even have accurate information about the form of CP my son has. (Her information on ataxic CP was wrong and she was lacking important info on muscle tone variations.)
I really get not appreciating autism awareness. But at least it is getting some awareness. You say autism and people have a general idea of what it is. Mention CP to the general population - even pediatricians, for that matter - and it is blank stares.
I think any awareness is better than crickets chirping, which is what we are getting right now.

Edited to add: you didn't offend me at all. I do get what you are saying. It is hard no matter what the diagnosis.

 

No...I totally understand what you're saying. It was a day for Downs Syndrome not too long ago and I KNOW for a fact that one of the gals helping with the AAM month has a 20 something year old sister with Downs Syndrome, and yet she's posting this and that and a million things about autism in support of her friend's twin daughters....her own sister's "day' was ignored.

 

I absolutely get what you're saying here! It's also something that has annoyed me! 

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Okay good news. I went to a neighboring county and talked to a gal there who is heading the organization for a lot of the events. We had a lovely, honest talk.

 

After April is over, she wants to work on getting something going to help autistic teens and adults be in community---job skills, housing, etc. This is a long term vision. I will help her wherever and whenever i can in my own county.

 

We also talked about the need for more organized support groups for parents and the children and a pooling of information. Beyond April.

 

 

Grassroots and guerrilla. Local. Not govt, not Autism Speaks and so on.

 

It was a lovely afternoon. 

 

If you're bothered...step up! Say something. Be honest. Work together. That was my take away lesson.

 

I just wanted to let you guys know that. No need to just feel bitter. Speak up! 

 

I feel loads better about it all now!

 

 

 

 

 

 

 

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