Fighter Parents

I read a great blog about how families of special needs people are always in fighting mode:

“I think people wonder why special needs parents stay in fighting mode. It’s because if we let our guard down even for a day, we miss something. Sometimes it’s something big. Or something as simple as our family getting to swim together in a community pool with our son safer by use of a floating vest. Our “fighting” isn’t fighting as much as it is just doing what we do. Or doing what we have to do.” http://supportforspecialneeds.com/2013/06/28/why-special-needs-families-stay-in-fight-mode/#comments By Julia Roberts

It got me thinking about the many fights we’ve had since our son’s diagnosis… He doesn’t have a modified curriculum on his IEP! Keep that little bully away from him! Don’t send him home– give him accommodations! You receive Federal funds– you can not exclude him! He’s not going into the multiple disabilities classroom– he’s going into general ed! And the list goes on… some fights I’ve handled well; others like a rabid mama bear. Some fights I’ve won– others have thrown me on my butt in a puddle of tears. But we HAVE to persevere.

I love the Samuel Johnson quote “Great works are performed not by strength but by perseverance.” But, I do believe that sometimes strength is needed… we have to be strong enough to get up in the morning and go head-to-head with people who are afraid of our kids or are too lazy to work toward our high expectations. We have to be strong enough to learn the law and use it. We have to be strong enough to keep on believing that our kids will reach their maximum potential when everybody around us only sees the disability.

Our children need to know that they are “good enough” to do what others get to do– they need to know that we’ll fight for them– that they are worth it! That we don’t give up– we accommodate.

Some of us fighter parents create organizations to include their kids when the mad hits (Ohio Adaptive Sports for example) others hire attorneys and some just pay for the private lessons when their kids are kicked out of group swimming lessons at the Y. (And wait to rub swimming medals in the faces of those who excluded our kids.).

I believe that every generation of fighter parents weakens the walls that our kids have to face. I want to be a fighter parent who helps clear the path so others have lesser fights.

What’s Wrong with this IDEA?

Special Education Law (IDEA) has kind of become my hobby. Sure it’s related to my son and my work… but it’s really interesting. As a mom and an advocate I think it’s a pretty good law. In both capacities there are a few things I’d change but over all it’s a good law. I’d love for the law to spellout what they’ve had to explain in commentary (http://www.wrightslaw.com/idea/commentary.htm) but it works. Well… it would work IF schools spent a fraction of the time getting to know their rights and responsibilities as the mom brigade has…

In my humble (but pretty experienced) opinion the biggest hurdles to our children with special education needs having their educational needs met are:

1. The people…. General Education Teachers who don’t think they have any responsibilities under IDEA… or don’t want to fulfil their responsibilities… or just plain don’t understand their responsibilities (which is the fault of those to taught them and those who are responsible for helping them with professional development). They know they are supposed to show up and sign IEPs… but they either don’t know or don’t care that it’s a legal document and their signature makes them legaly responsible for their part of the program. Special Education professionals— who don’t know the legal definitions of the buzz words they use… are treated as the “red-headed step-child” in their schools… need more funding for their students and can’t compete against the football program…. the list goes on. I do not believe that people go into special education as a profession without caring about our kids (some exceptions of course) and then they get beaten down. School Administrators— who see high expenditures with statistically minimal results… who are too arrogant to admit when they make “mistakes” and can’t make it right because that would mean admission.They fail at educating staff on special education law– fail to supervise special education programs– circle the wagons when anything goes wrong… fail to establish a culture that values special education, students in special education and families who live with special education needs. Parents— yes… we really are part of the problem. We are the foremost experts on our children– but,  (generally speaking) we are not experts in education. (Generally speaking) We are intimidated by professionals. (Generally speaking) We want our children to have it all– even what they don’t need because who knows– that might be the magic bullet. Many of us are angry and have blown a gasket at least once in the years of dealing with special education. (Generally speaking) We are excluded from the process. (Generally speaking) We are angry. (Generally speaking) We are tired.

2. Enforcement: The federal government went to all the trouble of creating a good law but appear to be careless about enforcement… it can take years to work through the process… Local and State cronyism makes it difficult for parents to fight for their child’s rights to have their “unique needs” met so that they can go on to “future education and independent living”. Without enforcement, this good law is impotent.

Of course funding is also an issue– but shouldn’t be because the law doesn’t let funding be a consideration in determining the child’s needs. When you get to nuts and bolts of HOW the needs will be met– that’s when you can get creative. There are many ways to skin a cat (my son is working on memorizing euphemisms so forgive me…) so, working together– so long as both parties have good faith and the best for the child at heart– is best for the child. Most of us understand a tight budget– been there or are there– so we can be reasonable. If districts would treat parents as true members of the IEP team and parents would set aside the anger over past wrong doings, creativity can lead to reduced cost– while avoiding reduced results. We must focus on the results– not the “thing”…  But, we can’t waste time on that which does not work.

There are many other obstacles to ensuring that our children’s needs are met and some we can overcome. There is already a pretty good law…

Social Advocacy: Giving my son a voice

Parents of children with exceptionalities (aka disabilities) see things that parents of the “normal” kids don’t notice –the volume of a movie, the ceiling fan, the florescent light that strobes,  the teacher who only explains verbally… We can complain– or we can educate.

Business owners, neighbors, family, friends, teachers don’t mean any harm (generally speaking) — they just don’t know any better. It’s important for us to educate these folks so that change happens.

I never complain without offering to help solve the problem– If I offer to train their staff at no cost and they don’t take me up on it they don’t have an excuse… and I have more leverage if I need to lodge another complaint.

There is no silver bullet… and unfortunately, education hasn’t always worked for me… I confess that I have filled complaints with the ADA when education has failed but it’s always been last resort.

Remember to be polite, know your facts, ask questions, be persistent and make change!

Federal Funding for Autism Research

One in every 110 children has autism. One in 70 boys is affected. There are almost 750,000 children in the United States who test somewhere on the autism spectrum.

In FY 2008, Federal spending on autism research was just $177 Million and is expected to increase to $282 million in FY09 due to $89 million in one-time stimulus funds…   That’s less than $40.00 per person with autism in the United States. 

Federal Funding for Defense Research in FY2009: $6,692 Million

“During his campaign, President Obama committed to $1 billion of annual federal spending on autism by 2012. In October, he identified autism as one of his administration’s top three public health priorities. This new prevalence data must compel Congress to take action to fulfill the President’s promise in the upcoming FY 2011 budget process,” said Mark Roithmayr, President of Autism Speaks.

It’s time to write our elected officials… and hold them to their promise. http://www.usa.gov/Contact/Elected.shtml

Wearing Blue for World Autism Awareness Day

Yesterday was World Autism Awareness Day (WAAD) as declared by the United Nations.

While watching the evening news, I noticed that MSNBC’s Chris Mathews was wearing an Autism Speaks puzzle piece so, I started bouncing around to see if any of the other networks were honoring this day… CNN’s John King was wearing blue but, his guest, Governor Strickland of Ohio was in red… On Fox Sheppard was in pink.

My family all wore blue, my Facebook friends wore blue and  the sky was even blue… but, the press (with the notable exception of Chris Mathews) didn’t acknowledge WAAD. And, I couldn’t find a single special on the topic.

It’s sad that this epidemic is a footnote– or rare news story– when 1 in 70 boys born today– 1 in 110 children– have autism. Surely they don’t think it’ll just go away if they ignore it…

Remember Swine Flu? Bird Flu? Just plain old regular flu? The numbers weren’t anywhere as high as autism’s and they led the news… funding for research and development of vaccines was astronomical but, the Epidemic that is Autism is relegated to a single line in the news casts if mentioned at all.

Don’t get me wrong– I appreciate any positive mention of accomplishment or discovery but, I wish that the attention given to comparatively minor outbreaks would be given to this disorder– and the boy who has autism that is dancing in my kitchen as I write.

When the 1 in 110 is enters the workforce or applies for government assistance they will notice… it will be the lead story… I hope it’s not too late for this generation of children with autism.

I challenge you to write a letter to the editor of your local paper, post a blog, write your elected officials and/or tell your Facebook friends what autism is, how it impacts those you love. Let’s talk about autism– let’s demand the attention this epidemic deserves!

The inclusion of behavioral health services and ending of  “pre-existing conditions” in the new Healthcare law are a really good start– and very appreciated by my family.

 As our Country moves on to Education reform let us advocate for increased and improved education for children with autism. Let’s insist that colleges  provide supports needed for those with autism to succeed. We, the people, the grassroots advocates for our children–can make a difference.