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"Its Not A Perfect World But I'll Take It!" Free from Skyhorse Publishing For Autism Action Month

Light It Up Pink for Autism with Kim Stagliano

Pink lightbulbI wrote this back in 2011. Not much has changed beyond my girls growing older and my dear Dad passing away in February at 94.  Share your thoughts on April - and what you would like to see that would help not only you, but others outside the community (are there any people left not affected in some way?)

By Kim Stagliano

I'm aware. I get it. I have 3 girls with autism. I am bludgeoned about the head, shoulders and heart every day. Awareness - it's only a word. It's passive. If I am aware that you are hungry and I don't ask if you have any food, then find you food and help you to eat, what the hell good does it do for anyone to say, "Oh, that Mary Pat is STARVING over there on Main Street and I feel uber-special helpful since I know it."

Of course most people aren't so callous about awareness - and there's a ton of great work being done not only this month, but day in and day out. Teachers, therapists, researchers with a death wish (snark alert) parents, friends, family - it's wonderful to see the outpouring of support and thought about autism. However, I'm tired, just came off a week of 3 kids with strep and have a head cold. So I'm feeling very snarky.

A month of "light it up blue?" I guess it's like Coke red. Fine. If you have the budget, you can brand anything you want. Hell, why not come up with a jingle too? Let's see.... Try singing this? "Autism was 1 in 10000 not long ago millions spent on genetics and the numbers oh they just groooooowwwww!" (That sounds best when sung out of tune sort of to the old "A sprinkle a day" Shower to Shower powder jingle, by the way.)

A month of puzzle shaped bright blue cupcake toppers? I saw those online and got so annoyed it was if I'd eaten a vat of blue die. Instant behavior problems. Whoop-dee-gluten-filled doo. Puzzles are a child's toy for God's sake not the mark of a national and growing worldwide epidemic. Let's see, colon cancer. Intestines. Maybe they get a slinky as their "logo." I told you I was snarky.

I'm tired of symbols and awareness and acceptance as "enough" for us all. I want action. I want to protect kids from death by wandering. I want adults n the spectrum to find meaningful work. I want kids with Asperger's not to be bullied into suicide or rage. I want more things than Veruca Salt could ever have demanded on her very best day. And while I know in my head that there's a lot of great progress taking place - it's never fast enough for my heart when I'm in the thick of the chaos.



I went to a wedding today. Bella's Godmother married the love of her life - she's my age, which ain't young. We were high school roommates and college best friends and she was in my wedding. My naive, never been whacked with the bad things happen brush wedding. I was part of her family for many years. And seeing them all today - her elderly parents whose eyes still shone with love when they saw me; her older brother who dated my big sister in high school and his wife and adults kids; the nieces and nephews - scads of them in a large Boston Irish family - it made me incredibly happy to be reunited with them all.

And incredibly sad that in World Autism Day (fly a flag! spin something!) I had 6 hours of time away, via the courtesy of my wonderful Mom and Dad who watched the kids. Six hours that should have a been an overnight in Boston while my 16, 14 and 10 year old had a blast with Grandma and Grandpa going out to dinner and maybe a movie or bowling. Instead, my mother has bruises up and down her arms from our child who seems to have a large share of crab DNA. I raced off the boat, oh yes, the wedding was on a beautiful boat in Boston Harbor, and sped home. I'm aware. And now it's time to ACT. I'm lighting it up PINK PINK PINK this month. Screw blue.

Comments

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Jeannette Bishop

Lots of wishes in my head too. I think the top wish is for real autism awareness, awareness of the environmental/vaccine injury responsible for most (all?) of the epidemic and therefore an awareness of the responsibility on the part of many to change what they do, awareness of the biological pathologies in those on the spectrum that mean they cannot handle many pharmaceuticals, other chemical exposures, even common foods as well as most seem to. IOW first, I want to know that the average healthcare provider isn't likely to harm my daughter further whenever given the chance, which I am sure is not the case now. I think that's why I have a hard time focusing on the next steps albeit urgently needed to care for our injured, that and the hope that such an understanding of autism as environmentally induced injuries might increase access to effective & safe remedies that by and large are difficult to impossible to access because of politics, not because of comparatively limited evidence (our children are exposed to many things with little evidence backing such practices) or even actual cost in some cases.

annie

I did not see any support today from the White House?

George stevens

Trumps going to light up the whitehouse blue on Sunday. While that normally pisses me off I find it interesting the whitehouse is doing it.

angusfiles

Thanks Kim for this we echo the previous post and our views.Ah! we want it all we want Trump to do what he said he would do so far as vaccines and pharma are concerned.I share with you below a letter of support we wrote for Trump a couple of weeks after his inauguration .Trump he gets such a bad press over here mostly- and you know how the public love fake news not real news anyway enough from me.

18th February 2017

President Donald Trump
The White House
Washington DC
USA

Dear President Trump

This letter is sent with great thanks, admiration and respect and is a vote of sincere confidence from one family in Argyll, Scotland. Please be assured that not everyone in the UK pays attention to the lies and false reporting emanating from the mainstream media.

You are not, unfortunately, our Prime Minister/First Minister and yet you have restored our hope for the future and belief that things can change for the better and I admit that we are hoping for some sort of cascade effect here in the UK.

As a family we have, for a long time, been disillusioned with what you rightly call “fake news”; in fact the rule in our home is - if it is in mainstream media then don’t believe it. We do not have scheduled TV in our house but stream real information over the internet. We have watched recordings of you speaking and the rally at Melbourne Florida was the best. We also follow Alex Jones’s Info Wars.

We are the parents of a vaccine-damaged severely autistic son, we are long-standing supporters of Dr Andy Wakefield and it is through my husband’s involvement in various autism groups that we became aware of your views on this catastrophe and came to support you. We then found that you make sense not just on autism but on all the major issues being faced at the moment especially the issue of dealing with militant Islamic fanaticism. You embody the principle that “Charity begins at home”. I am not particularly religious but I have found one quote from 1 Timothy 5:8 “But if any provide not for his own, and specially for those of his own house, he hath denied the faith, and is worse than an infidel.” You are providing for and protecting your own and this is a correct and fundamental principle.

I know that above all you are putting America first but wanted to let you know that you are a beacon of hope beyond the USA. We look forward to your State Visit to the UK, we welcome you from the heart and hope that we can get to one of the venues to see you.

Keep shining for us all

Pharma for Prison
MMR RIP

Shelley Tzorfas

I so appreciate Kim's point of view and thankful that there is a place that allows folks the dignity to vent especially when the kids grow up and have no place to go other than staying home with their PTSD parents or parent. We are going on 30 years of a sudden Autism Epidemic. The vaccine schedule bursted open when the US passed laws taking your right to sue a vaccine maker away. This legal immunity brought them robust sales regardless of how many kids developed seizures, deadly allergies- as peanut oil was utilized in the vaccines ,or had their futures Stolen from them due to the chemicals causing their delicate brains to swell (Brain Encephalitis) which morphed into a code word-AUTISM.
So many folks think that the reasonable thing to do is to promote research. I used to think that would be helpful but my "patients" has worn thin. Research would take another 30 or so years of people donning lab coats, of Universities getting grants based on the Conclusion matching the grant ahead of time such as "Autism is because more children live near highways...of articles and the news proclaiming "Researchers found that.." Just Stop shooting children with cancer promoting Formaldehyde, Dead baby cells, Neurotoxic Aluminum, Thimerosal/mercury, animal and insect parts and stop manipulating people into the Mystical Blood Brain Barrier which is said to "OPEN SESAME" when an infant teeths or starts life with polysorbate 80.

kws

I agree with Aimee and have a couple more for the magic lamp:

I wish the many autism organizations would unite, put aside their differences and pull together to achieve critical mass. I know this is easier said than done.

I wish my parents had warned me about the vaccines. People had suspicions then as they do now and if I had only known I could have averted disaster.

I wish I could regain my career after a 12 year hiatus taking care of my son. On bad days, I feel as lost as him.

I wish I could be in Washington DC today to express myself. My thanks to everyone who is.

Robyn

Okay this is long. I'm so sorry but I got into a roll.

Kim
Everything you wrote I could have written except that you have it x 3!! God bless you girl! Mine is a 15 year old young man whom no one can watch except for me or my husband. In fact my husband and I can rarely leave each other alone with him while caring for him when he is not in school (we are is to late 50's). We have to stay together to watch him. We can't even leave the house or go to anything together without him. Most of the time we go alone to events or anything because we can't take him anywhere because he is extremely difficult for us but also because of all his noises, behaviors, anger and self injurious melt downs when out in the community. We have an older son who plays college baseball who we have almost NEVER ever see play (😢). We also have two college girls who can really never come home again because he is so big now and dangerous to potentially hurting them on accident. We also never get to go see our girls where they are either. Anyway, I am very tired of all the "awareness." I am wondering who gets all the money raised for this "awareness". They (the organizations who fund raise in my area) have slogans that say something like "improving the lives of those on the spectrum and those who care for them." Oh really? Well, having a well trained responsible person who I can trust to take our son not only off our hands for a short while but also while taking him to do something great with him and for him would be a start in "improving" our lives and his life. One day I called the local organization that says it exists to improve my life and my son's life and asked the person who answered the phone tangibly how they improve our lives and how do O tap into that help because I seriously need tangible help and relief. They had no idea how to answer my question. On that elusive tangible level, in the past three years while he grew into a large agitated teenager, I have never been able to get a worker to even come to our house to watch him. Never. It's like they hear 15, boy and autism and they don't take our case. Also, we are completely damaged financially from having paid every penny we had out of pocket to therapies the first 10 years of his life. We have officially been moved into the "working poor" category that I never knew the definition of before now. We no longer have the nice(ish) house we had which was a place we didn't mind having workers come in to. But then, we got into such a bad financial place that we were forced to let the home go and move into a place much less able to accommodate a worker for our son (my mother-in-law's small circa 1952 (old and completely never renovated) house. It's just too small, dark and dank to have someone come in to watch him for a while or "relieve" us. And someone coming in actually doesn't really relieve us. He comes over to us the entire time. We don't need awareness. I mean maybe autism does but we need real help. We need real solutions to this impossible life. I know what would really be the answers to all these problems from the perspective of people they go through it moment by moment day by day and we love these kids. I have this dream that I would like to tell to someone who can actually make it happen. It's not just a dream for my kid and my family but for all of the kids like this and their families in my community and also in every community in America. I know what all the problems are and I think I have the solution. It would take a lot of help and a lot of money but I have the answer at least what I would want to see happen. Awareness? Maybe. Real solutions that help these kids by giving them and their family a better life? Definitely! You wrote a great piece and by the way I think you have a right to be snarky. I know what you live. I just wish that it could all be changed for you and for all of us. You are now in my prayers. 🙏

AND Ditto!!! On everything Aimee Doyle just wrote!!

So, I wasn't going to mention my dream or my ideas because they're so involved in my head. I HAVE begun to put them on paper but basically I wish every community had a sort of autism campus. I am envisioning a beautiful piece of land maybe in the mountains, maybe near water it all depends on where the community is but this must be in every community where there is a need and we all know the epidemic that AutismMom has become so this is probably needed in communities across this entire country. But the land should be beautiful and the buildings should be state of the art because these kids and these families deserve it. My plan for this land? To briefly touch on something very involved in my mind it's a plan for multiple buildings (a sort of campus) it's a beautiful main building. Each community campus can start small at first with just the first main building being multiuse at first but with a plan for many specific-use buildings and also eventually residential cottages. In the beginning, as fund raising would allow the first building would be an Autism Community Center where everyone would meet for many different activities. Some would meet for specific activities, some would meet for social activities, some would meet for therapy, some areas would be just for the moms to meet (and dads if they wanted to). There is even a small movie theater and cafes for the moms to meet in this dream. It's like an autism center that knows exactly what families and these kids need. This place in my head is completely perfect for what my son is lacking right now in his life. He has no friends. Heck, I have no friends. Friends requires work and with having to deal with these kiddos we just don't have anymore work or time in us. People sort of just fall by the wayside as the difficulties of autism become too much for family and friends to be able to handle amd so we let them go. We understand. If it weren't our own kids we would do the same thing. But we need friends and socialization. This dream would be a one stop shop for fun, learning, therapy and friends. AND it would be there for these kiddos and their families to go to 1) after school (like say from 2:30 to dinner time) 2) on weekend days (til dinner time) 3) during school holidays (til dinner time) 4) and summers (til dinner time). It would be a place that would close by say 6:30 pm so the child can go home with the family for dinner time and to get ready for school BUT WHAT WILL ALSO EVENTUALLY BE AT THIS WONDERFUL PLACE is that there be A system in place and accommodations for the child to have an occasional scheduled weekend long sleep-over. There will be special nice homey quarters with a worker supervising who can really take care of them for an entire weekend so the family or caregiver can get a real weekend break which is something that never ever ever happens for them. There is so much more about this perfect dream that is in my head but it would take too long to put here. I did draw plans for the first building. It started as a very large dream home that I drew but when that dream grew into this dream I began to modified the plans to be a beautiful homey autism community center. and now I am currently drawing it onto this fictional dream piece of beautiful land. All I need is a lot of help and LOTS and LOTS of money (for the first building I am pretty sure I would need $2 million to start but I've never spoken to an expert on this. This is just my uneducated guess. I would love for this to happen in my community (West St Tammany Parish, Louisiana) first and perfect it here first and THEN take my prototype to all other communities that would want this. Anyway, that's what I would want for our kids. And here's the kicker, I am the definition of the "working poor" (which, if you knew me, you wouldn't believe) but I have absolutely not one penny to undertake such a dream (I barely have the ability to buy groceries regularly). I could never ever afford to be able to send my kids to a dream like mine. No, this Autism Community Center, would HAVE to be 100% free to ALL families who are dealing with this. Of course, we would have to fund raise and we would except government help except that he would have to stay private because to me everything the government does eventually turns to crud. This would have to stay in a state of the art private endeavor. If you know of anyone who has already created such a place please let me know. However please don't mention those places that charge $300,000 per year for the kiddos to attend. I've read about those places. Maybe Joe Montegna and Sylvester Stallone send their autistic kids there but I can't even afford to step on the driveway at those places. No, I'm talking about a place that is good for these kiddos and for us their families/caregivers that is completely lovely and completely state of the art but it must also be completely free to anyone with this disability. So these are my thoughts but only the tip of the iceberg. I want every community to have this, what from my perspective is completely necessary, such a wonderful place for these kids.

Robyn
Covington, LA
rstweedy@aol.com

Aimee Doyle

What would I like to see in April? Like you, Kim, I would like to see autism ACTION rather than awareness. After 25+ years in the trenches, I'm aware already. So here are three wishes for a magic lamp...

I'd like to see real research into effective treatments and therapies for adolescents and adults with autism. The numbers are growing every day and most of the research focuses on kids. All I ever get from my son's doctors are offers of more drugs. And while I'm at it, I'd like to see insurance coverage for these effective treatments and therapies for adolescents and adults.

I'd like to see some honesty and in-depth coverage regarding the impact of severe autism...on the individuals with autism and their families. All I ever see in the news media - and even entertainment programming (e.g. Sesame Street's Julia) are shiny, happy autism stories about how autism is a gift, a difference, just needs acceptance, etc.

I'd like to see the neurodiversity movement actually pay attention to those more impaired by autism - those individuals at the middle and lower end of the spectrum. My son would love a friend, but no one who is higher functioning has ever wanted to spend time with him. I feel like his "community" has no place for him (other than a group home) and has abandoned him. And how about Ari Ne'eman spend a week taking care of someone on the severe end of the spectrum - yup, hands on stuff. Maybe then he'll get it.

Three wishes for April. I have a lot more wishes, so maybe should wish for more genies.

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