A Support “How To” For Those Who Want to Know.

I was asked a very compassionate question from a non-autism parent about how to respectfully support autism families in our community. Here was the question:

I’m so sorry for your daily struggles and I certainly won’t pretend to understand. One question if you don’t mind me asking; what is an appropriate way to bring awareness, acknowledge the lack of research and funding, show support for friends and loved ones, etc?  We try to contribute to different organizations and in return, we are usually given things (t-shirts, pins, etc) but it’s hard to know the fine line between respect and support vs celebration and feel good behavior.

First, do not buy into the businesses that have been formed to make money off of the nightmare that is autism such as the big one Autism Speaks. If you ever look at their info they have to share, a huge chunk of money they raise goes to big money salaries and fancy New York offices. They have now spread to Houston. Every now and then they promote or do something good but in the big picture, they do not contribute to actual research that is relevant nor true day-to-day help for families that are struggling. The daughter of the original founders who herself has a severe son has openly written about why you should not support them.

What you can do instead of just buying the blue puzzle pieces and the ribbons and the bracelets and doing those walks autism speaks loves to put on is pay attention when it’s time to have legislation passed that actually creates funding for good quality therapy centers, adult day programs, and residential programs because right now Texas is third to last for taking care of both our disabled and veteran populations.

Pay attention when teachers and schools say they need more help to be able to support the kids they see in schools and put pressure on the Texas education agency to provide more funding and help in training because as that huge number of kids being diagnosed with autism rises our school districts are overwhelmed.
Pay attention if your church does not have a disability ministry and help volunteer and start one because I guarantee you all the churches that have a strong disability ministry it is put on and managed by the parents of the disabled kids themselves who already are tired and exhausted and stretched to the max.

When you see a mom in Target struggling with a large teenage boy who looks like he’s throwing a fit over not being able to get a Thomas train either standby quietly to see if she needs help or just walk away without judging our staring.
When you see a family in church with a child or adult who keeps making weird noises don’t shoot them dirty looks rather ask the mom if you could help or better yet just act like you don’t notice it at all because that mom is so desperately trying to just get a few minutes of comfort in a church that should embrace her and her son who can’t be still or keep quiet.

I have had friends who are cancer survivors tell me they have the same thoughts and frustrations with all the pink ribbon awareness crazy that goes around breast cancer month when they see women who are in the trenches struggling and have no family or financial support.

Autism is a lonely disability for families who eventually just quit going places because your kids just seem strange and loud and different and people judge and stare.

The real awareness would be families like mine who have a 225 pound teenager that still acts like a five-year-old to be able to go out to places everybody else takes for granted such as the grocery store, restaurants and church and not be stressed constantly that people are going to act annoyed and bothered by us and feeling like the community really sees us and knows when to lend a hand or just to look the other way as we try to get through our days.

Real awareness would be not just feeling good that you are contributing from the outside looking in wearing an autism puzzle piece T-shirt during the month of April and then forgetting about these families the rest of the year. I guarantee if you look around in your own church, your own neighborhood, your own school or wherever you frequent often you will see autism families that are sitting on the sidelines trying to get through their days with children who will never grow up who will never leave home and who will never reach milestones and will eventually have to be left behind to be cared for by others when their parents are gone. Real awareness is helping us families figure out a plan for all of these adults with autism to have a quality place to be left one day when parents can no longer care for them.

If autism has not affected your family yet the way the numbers are rising it will.

If you managed to escape having a child with autism there is a good chance you will have a grandchild with autism. This is a community/society problem that right now is being left only to be solved by parents whose shoulders are already so weary.

I absolutely love this question! Thank you!

When Children with Autism Grow Up.

Take a look at this link. The story covers what we parents have been asking from day one – what happens when our kids with autism become adults with autism if they are not able to take care of themselves? Sad. There is a quote here that calls this a “groundbreaking study.” Groundbreaking? Not really. I have been asking these questions since Tyler was diagnosed in 2004. We just hit 1 in 36 people diagnosed with autism in 2017, and articles like these just keep asking the obvious questions with no real work towards a solution!

https://www.disabilityscoop.com/2018/03/05/autism-challenges-persist/24802/?platform=hootsuite

 

Autism Awareness is Nothing to “Celebrate.”

This is why autism is not to be “celebrated”. It is not AUsome. That whole phrase is overused by well-meaning providers but offensive to us parents. Do NOT buy into the light it up blue propaganda we are all about to be fed next month during April autism “awareness” month.

The death rates rise for our most vulnerable in this country yet no alarms sound, no outrage over the deaths, because publicizing autism means the begging question, where on earth did all these children with autism come from? 

Autism spectrum disorder is a disability few properly understand, children who look “normal” but are far from typical, don’t draw attention and yet they find water or danger so easily. 

These children (and adults too) are not always aware of danger, parents are hyper-vigilant every moment of every day. I know because we have been and are still super stressed and vigilant for our son Tyler who at age 15 goes to a small private therapy school and we now can reason with him but he is easily distracted and can never be left unattended, this is Autism for millions. 

https://www.cbsnews.com/news/trevyan-rowe-autistic-student-drowns-n-y-school-911-employees-on-leave/

Autism Is Medical

Someone sent this link to me and suggested I share. I agree with most of what it has to say…

Autism is medical. Tyler was officially given the diagnosis of encephalopathy NOS many years ago by a neurologist, and then eosinophilic esophagitis, and then irritable bowel syndrome, and then metabolic disorder. You get the idea. These kids are medically sick we just call it autism to package it nicely and this is why please do NOT buy into the light it up blue nonsense groups like autism speaks will be selling during “autism month” in April.

Nothing to celebrate here folks we need real conversation and real answers to help this generation of sick kids.

https://walkinginquicksand.com/2017/03/31/my-sons-autism-was-caused-by-autoimmune-encephalitis-and-no-i-wont-accept-it/

 

 

What Keeps Autism Moms Awake At Night?

I had so many autism moms of younger kids send me this after they saw my post that I took Tyler out for lemonade frozen ice in Fulshear by myself Saturday night. They know Tyler is 225 pounds 5’10” now and even after years of therapy still on the low to moderate end of the autism spectrum. For those that asked how, years and years of 14 hour therapy days and we are still not done.

This mom in this video says what all of us are afraid of when they are little. What happens when they are bigger than me and have a meltdown in public? And the real question that keeps us up at night, what happens when I am gone who will take care of him?

This mom says this (and more) so eloquently I wanted to share her post. There are many “lasts” for parents as they go through the seasons of raising kids – only other special needs parents get the “last” time you really thought this will be ok.

https://www.facebook.com/todayparents/videos/10155588729997984/