Fighter Parents

29 06 2013

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?

18 06 2012

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…





Perseverance

16 06 2012

4th grade was a nightmare! We knew there were issues (seriously, you don’t give report cards to kids with disabilities?! Hellowwww ADA!) but the severity and number of issues didn’t come out until after the school year was over… 4th grade with “General Curriculum” on his IEP means (according to IDEA) that he should have been taught the “same material taught to non-disabled” 4th graders…. not the K-2 pre-reading curriculum that the district gave me as a result of my FERPA (Family Education Rights and Privacy Act) request. Then there was the issue with earplugs, fig-its, the boy who terrorized him, the change of placement without team agreement (or even notification), the humiliation in the gen ed classroom… no wonder he’s been diagnosed with an anxiety disorder!

So… in July (2011) we filled a complaint with the US Department of Education Office of Civil Rights (OCR) and submitted more than 5 inches of doubled sided documentation. In December we received a “letter of findings” that basically told us that we said this and the district said that– OCR just doesn’t know what really happened. Seriously. Did they not look at the documentation? So… in January we sent in our appeal to the Washington, DC office– with the original 5 inches of documentation plus another 2 inches. According to them it’s “impossible” to tell how long this is going to take. (And we are supposed to believe that they are serious about disability law?!– without enforcement there may as well not be a law.)

So… here we are at the end of 5th grade… Jay spent the last school year in full inclusion with an aide and personal FM system used only during lectures. He passed all subjects (even without having been taught any subject in 4th grade) and has increased 3 years’ reading levels. He has friends– REAL FRIENDS who seek him out! He has a crush that seems to be returned… he has made more progress in one year than he did in the previous 4.

This summer he is taking speech, swimming, and cornet. He is doing a research project about penguin behavior with a typical friend– this is part of a bigger– grown up– research project and their documentary at the end of the summer will become part of the zoo’s educational program. We are taking his group of 6 on field trips to the Science Center… one of the girls is setting up a book club that Jay will be part of. He’s working so hard– and having fun!

J has a social group. Kids who seek him out... who like him quirks and all...

I am exhausted!

Great works and accomplished not by strength but by perseverance. Samuel Johnson





Open Letter to Asbury University

4 11 2010

Asbury University (formerly Asbury College) is playing Fox News in the campus gym and cafeteria. When did Asbury start teaching propaganda instead of truth? When did it lose its compassion?

Shortly after college I married a fellow Asburian who declared his homosexuality a year later. He was told by an Asbury faculty member that if he got married he would be “cured” of his homosexuality. I was the victim of this declaration and yet I was able to forgive the College for its naiveté.  

Now, the views espoused are attacks against my son (who is the child of my straight second husband). And that I cannot forgive so easily.

My son is on the autism spectrum. The Republican Party and its mouthpiece, Fox News, have mocked those with autism specifically and those with pre-existing conditions more generally. Leaders in the Republican Party think my son is a wrecked car with “autism”.  I cannot—and will not—support a political party who values money over people.  I cannot—and will not—support an institution that condones ridiculing “the least of these”.

As a result of Asbury’s shift from a conservative Christian institution to an extension of the political party whose leaders call my son—who is a gift from God, perfect and created in God’s own image—unworthy of equality;  I am changing my Will so that it no longer includes your institution.

The Jesus I know doesn’t think little kids with pre-existing conditions should be discriminated against in favor of profits. The Jesus I know doesn’t hate or ridicule people who disagree with him. The Jesus I know teaches compassion and charity.

“I like your Christ. I do not like your Christians. They are not much like your Christ.” –Gandhi

Please call Asbury and tell them to turn off Fox. 1-859-858-3511 (X 2105 alumni office)





Where’s The Parade?

23 09 2010

Today it became illegal for children with developmental disabilities to be discriminated against by health insurance companies– Yes! Mr. Biden! This IS a big F*#@%ing deal!!

But, where is the parade? Families celebrate silently and politicians who voted for it shy away from the topic unless they are defending their vote… the President has taken 6 months to start talking about it in earnest and republicans are lying about it. 

Insurance companies are having tantrums and refusing to play– that gets the attention of the media. Republicans are proclaiming they will repeal healthcare reform– that gets the attention of the media.

But where are the families who benefit from this law? Why are newspapers burying the story on page 5 when full page covers were given to protests prior to passage? Why are politicians campaign websites missing the healthcare link under “issues”?  The silence is deafening.

MY SON HAS INSURANCE TODAY BECAUSE OF HEALTHCARE REFORM!! Children with developmental disabilities– autism, down syndrome ( Sarah, that includes your son!)– can no longer be discriminated against! Short of a cure for autism, or truely effective treatment,  the end to healthcare discrimination is the biggest thing that can be done for children with autism (Autism Speaks)! So– where’s the parade?

I call upon those who voted for this law (Sherrod Brown and John Boccieri– MY  SON’S representatives)– for families who spent years fighting for this day– for teachers, doctors,therapists and advocates of children with developmental disabilities– for the media who championed this law– CELEBRATE!   This IS a Big F*#@%ing Deal!!





A Little Bit of Normalcy

23 09 2010

Autism is no longer an uninsurable pre-existing condition

For well over a year we fought for the opportunity to pay for insurance for our son who has, until this month– been denied on the basis of his “pre-existing condition”. Jay has autism. He’s healthy and happy. And now… he has insurance!

I am thankful to so many who had a part in making this happen… to family and friends… to politicians and insurance companies who gave me lip service and made me angry… but, it really came down to our Congressman– John Boccieri, who took a big political chance… whose family endured threats and as recently as last week was on the front page of the NY Times with a man’s finger in his face… He voted for healthcare reform.

I don’t believe that when President Obama signed HCR he had any thought of the children with autism who were denied this often taken for granted thing– but, his signature gave my son a little piece of normalcy. For that I will always be thankful.

The Republicans have sworn to work for the repeal of HCR… This would be a huge step backwards… and, we can not allow it to happen.  Vote. Stand up for those who, like Congressman Boccieri, have stood up for our kids!

Tonight, my son goes to bed with insurance. And, I can sleep knowing that what I did mattered.





Social Advocacy: Giving my son a voice

23 05 2010

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!