Friday, April 17, 2009

Fed Up With Autism Fighting

Here is a great posting opinion from Tiffany and my comments too:

Tiffany this is a fantastic post and one that EVERYONE should follow the advice of. Every family is different, each Autistic child is different from every other Autistic child. No one should tell another parent or person with Autism what they should be doing with their life... even if they think they KNOW that family from watching them on TV. ;)

Our family goal is to increase the awareness, acceptance and understanding of Autism and all of it's various aspects and effects on families.

Some have accused me of trying to make money from my children. First if they follow your post's advice they shouldn't assume they know what I'm doing and be quite. However we've made money from our situation from a 'location fee' from the film production company. This is a standard in their industry. Then we have made an income from the sales of the Autism t-shirts that Robin and I designed.

But all the other TV, radio, magazine, blog and internet interviews we have received nothing. AND I'm not asking that they do.

95% of the comments we get on our blog or from emails have been positive and supportive. And I will continue to advocate for my children until the day I die. We too did not yell, "Yipee!" when we got the diagnosis for the children. We too did LOTS of grieving, for around 1 1/2 years. I was let go from the job I had at the time because quite frankly, at the time I was useless and not able to have my head into work. Worrying and wondering about what life was going to be like with Autistic children was just too much. It was tough and still is and IS financially hard. And I'm not sorry and will not apologize for mentioning that Autism hits families in the wallet. We've received many, many emails confirming this from other families. And they too are glad that the world is starting to understand those financial hardships. Its a FACT that people need to realize.

We need to stop the fighting among ourselves. It's a waste of time, effort and emotions. Another parent may want to chelate or put their children through test after tests or treatment after treatment after treatments. Or do nothing. Another parent may not agree with either and you know what? Each one is doing right thing for THEM.

That "Autism Czar" appointment that President Obama promised? He/she should understand all the above of what you and I have said here. And have a plan for ALL families and persons affected by Autism. And we need to get the support from this Czar... NOW. Too much talk and not enough action.

My creed: Autism IS a Spectrum Disorder, CAUSED by a spectrum of reasons, needing a SPECTRUM of treatments or solutions and requiring a spectrum of funding.

Peace and Blessing to all... Nuff said.



Maddy said...

Indeed. Spectrum, spectrum, spectrum. Now I shall nip on over to your recommended reading.
BEst wishes

The Drysdale's said...

Well said!

Laura said...

I love your creed! It is so true... I have never met two children on the spectrum who were the same; similarly I have never met two people who were the same. Every is a combination of strengths and weaknesses, and perhaps those on the spectrum have more pronounced strengths and weaknesses

hellokittiemama said...

I love this:

Autism IS a Spectrum Disorder, CAUSED by a spectrum of reasons, needing a SPECTRUM of treatments or solutions and requiring a spectrum of funding.


Hummingbirder said...

Yes, well said! Thank you!

Jennie said...

I am so sorry that people are judging you like that. Like you need it with all you have going on!

Anonymous said...

Well said! Even my son's special diet alone had put us in more debt than I ever dreamed of. And we are in a very desirable situation where we live where all his ABA in home intensive treatment is paid for here in MN. I cannot imagine what most people are paying for.

Jodi said...

I totally agree with your creed! I also think that it is an awesome creed for ALOT of issues out there! My 2nd son has a traumatic brain injury and no one sees ANY issues with him really (other than myself and hubby) And like you said people need to stop fighting between themselves and start to look at each person and issue (autism or tbi or cancer etc) as its own seperate issue/disorder and go from there! Hear Hear!!

Shantel said...

I agree that there is many different opinions. As varied as the spectrum itself. No one has the right to judge another's situation. With my blog, (more importantly with the way I live my life) i hope to promote the Gospel of Jesus Christ to help individuals who struggle with hope. Not a cure - the Lord does not allways take away our trials - but he does have a way for us to be happy and have hope. That is what I want to teach. I have that hope - through the power of the covenants I have made, and life is wonderful. I think it is more important to find the meaning behind what is happening to grow to be like the Savior, instead of just trying to "Fix" it. I just wish Autism was used to grow people towards Heavenly Father - not to tear each other down, wich is what Satan would love to have happen. We should all try and get the bigger picture here. My prayers are with all of you guys. We are so loved, and watched over.

Amanda said...

Well said!

DES said...

Ever read one of those blogs and just keep nodding and smiling? That's what I've been doing between yours and Tiffany's!

Sorry to hear so many have the negative remarks and comments...but I think we all get some point. I have one dx'd as Aspergers and one who had the classic full blown Autism dx. My youngest....supposedly severely Autistic, MR with severe sensory disfunctions. I grieved as well, and then pulled myself up and started the work we all do (as any parent would). Now he's considered HFA...and folks think I have NO clue what's its like to have a child on the spectrum with severe issues. OH yes...I do, I do! Understanding the 'spectrum' is being able to use their strengths to downplay the weaknesses. No cookiecutter programs...just individualized. Your family is amazing...and I admire your determination to help others understand! Bravo!

Thanks for sharing as you do! :)

Anonymous said...

Well said! Autism, Dyslexia, Attention Deficit Disorder are all potential pitfalls when a child doesn't have proper child development. I think all families should be wary of this.