autism · Down syndrome

Given To Fly.

Today we did Abby’s first Individualized Education Plan (IEP) at the school district.  I really hate IEPs.

As I drove to the meeting, I played Pearl Jam’s “Given to Fly,” the song I used to listen to a lot after Casey was first diagnosed with autism. I turned the music on as loud as it would go before the garbage in the doors rattled and let the music surround me for a bit.

“He could have tuned in, tuned in, but he tuned out…”

I thought about all of the IEPs I’ve done with Casey. All of the fighting with the district over shitty teachers (just one, actually…), therapy times, inclusion, etc. The time I stood in a Michael’s and screamed into my phone at a school psychologist, “I know our rights! I’ve read all of IDEA! You don’t know what hell you’ve just unleashed…”  All of the hours sitting around tables negotiating. Losing my shit when I wanted to stay composed, staying composed when I wanted to strangle someone.  I remember nodding in numb agreement when they told me that Casey would probably never be able to be in a regular classroom…

“A wave came crashing like a fist to jaw…”

Then I thought about moving to Arlington and having the special education teacher, Gina, meet Casey and say, “He’ll mainstream. He’s going to do great. We’ve got this.”

“Delivered him wings, ‘Hey look at me now!’ “

Handed to us was a classroom with an amazing regular teacher and a support staff that would help Casey realize his potential. Gina, who would push Casey beyond our expectations. Who used his strengths and his passions to expand his education to things once thought unattainable.  We moved to Rhode Island to a new school system and a new way of approaching things. Gearing up for a battle for services, Casey was welcomed by a staff who was willing to bend as far backwards as necessary to provide him the best education they could.

“He’s.. flying
Whole
High.. wide”

Today at Abby’s IEP, goals were made and services were given without me even so much as having to hide clench fists under the table. The IEP was written for here, but will have to be ‘honored’ when we move back home to Washington State in August.  She’s offered speech, occupational and physical therapy in the classroom three times a week for all. She’d be in half day of developmental preschool, then spend another half day in an inclusionary preschool with “typically developing” peers.  The guidelines for these services are outlined in the Individuals with Disabilities Education Act, which is federal law, and then interpreted and carried out by the different school districts.

The interpretation of necessary services vary wildly. From us being told that Casey would never mainstream on the west coast, to him being readily mainstreamed on the east. From Abby getting 28 hours a week of services on the East coast to four and a half on the west.  That’s right. I called the Office of Special Education in our district in Washington and that’s what they would give her. No inclusion with typical peers. Two days a week, two hours and fifteen minutes a day.

I’ve been thinking a lot about those disparities. Is all about money? No. Is it all about teachers? Absolutely not. The teachers and staff in Washington want the children to be successful. Besides the two I’ve spoken about, all loved Casey and really had his best interests in mind. So what is the biggest difference?

The parents.

“He floated back down ’cause he wanted to share
His key to the locks on the chains he saw everywhere”

I’ve read the history of special education law- and it was not brought about by lawmakers. No, it was fought for by parents. Improving districts and schools has been through battles won that can’t possibly be shouldered by the teachers and staff alone. Reform needs to happen. It takes parents who know their kids need and deserve better. It takes losing your shit when you’re supposed to stay composed, and staying composed when you want to strangle somebody.

Up until now I’ve fought leaving here with all of the rage in my soul. I’ve often pictured myself screaming and clawing at the hardwood floor of the home we’re renting as Lance drags me out by my feet. I really liked the idea of my kids’ IEP meetings not being a battle of wills. I liked the idea of it just being easy. And then I remembered that mom, screaming the words to a Pearl Jam song as she sobbed in her car after moving her child from a regular kindergarten to a self contained special needs classroom, after being told repeatedly that he would never fit in in a regular class.  I ache when I think of that moment. I ache that parents are still having those moments and don’t know they can fight. They don’t know how much they can change.

So we’re going back.

Reforming special education

“He still gives his love, he just gives it away
The love he receives is the love that is saved
And sometimes is seen a strange spot in the sky
A human being that was given to fly”

Maybe the fights we’ll soon face will pave the way for other families to receive better services than we did. In the schools we’ve been to here on the East Coast, we benefited directly from the fights of the parents who went before, and for them, I am eternally grateful. I am excited to join the ranks of the parents I know in Washington who are already working for more. I’m excited to give back what was given to me by the generation of parents before me.

And in your schools in your cities and states, will you join me? I don’t know how, but I do know why: To give our kids wings so they can fly.

25 thoughts on “Given To Fly.

  1. Once again, you blow me away. So tell me what to do. How do we go about getting something passed that provides a nationwide menu of services that is consistent? Does someone need to draft a bill?

    1. At this point, I have VERY little confidence in our national government to make federal laws that would help students. I mean, they won’t even sign a law that would raise the standards of the use of seclusion and restraint in schools to what the laws are for prisons!

      I guess I’m just to the point where I’m seeing that fighting for our own kids’ educations affects change for students who come behind them. We need to work to change our own districts, and I’m not yet sure how that’s done.

      1. I don’t think you WANT the Federal Government dictating services, or you might find them instituting MINIMAL services everywhere. This way parents and children can experience different approaches, and then advocate for what works when they move someplace else.

  2. You are going to make them do the right thing for Abby, and Casey, and I know you will make a difference for so many others. I’m also glad we’ll be in the same time zone 🙂

    I think there is something more going on than just the parents. Why are some regions generally more willing to do more for their kids? In other words, I don’t think the parents in Rhode Island fight any harder for their kids than the parents in Washington or California. There is something cultural, by region or maybe school district. I’m not sure what. Perhaps the east coast schools have been dealing with this longer (though I don’t know why that would be), or there was just a different philosophy of education. I’m not sure.

    1. It’s true. I think that philosophy was born out of parents fighting though. I mean you look how special education started and took hold in this country. Parents. Getting pissed the hell off and not allowing for the same old things to pass as okay with their kids.

      And I think the programs in Washington have totally been pushed forward by parents, but I don’t know if the vast majority of parents understand how the law is interpreted in other places. I would have never known to ask for things outside of what they could provide, you know? And when they said that their “research” showed that Casey couldn’t mainstream, I didn’t know to fight like hell for it. The teachers weren’t withholding services, they just were doing what they knew. What the districts would allow for.

  3. It is not all that dissimilar from the saying ‘One generation plants a tree, the next enjoys the shade.’I WANT the student service director to dread meeting with me here in our school district in Oregon. I WANT him to wince when his secretary says: “Mrs. Welty is on the phone…” I want him to lick his lips nervously when my 45 packin husband meets him in public. Those things mean that he is paying attention, and that he knows we aren’t going away. I want change too. Every battle won may mean that some parent doesn’t have to fight that battle in the future. I would rather not fight, alas that doesn’t seem to be my journey.

    1. I feel the same way. I don’t want to fight. I don’t want to agitate. It’s not me. But I have two kids with special needs so I’m going to have to grow a spine at some point. Like a stegosaurus spine.

  4. Applauding though my tears. I wish I understood why geography can make such a profound difference in not only services and supports, but in the prevailing attitudes which DRIVE the decisions behind them. It’s infuriating and mind-boggling all at once.

    I love you to death when you are funny and snarky. When you are fired up and passionate? You are a power to behold and a force to be reckoned with. I can’t wait to celebrate the victories no matter how long they take.

  5. Hi ! First off I love your blog . You’ve made me laugh out loud on the train many times and I so appreciate it! Secondly we just had an Iep meeting for our daughter with DS and the issues you bring up are what’s going through my head . My daughter is in pre-k and there haven’t been any kids with ds in at least 15 years . Our district is a pretty affluent district and apparently pretty set in their ways. Our daughter has been struggling with some of the routines this last year in the blended inclusive program so the whole year they’ve been recommending we move her to the more self contained room with 5 kids . We feel that the room with 20 kids has helped her verbal skills dramatically but she is still super shy and doesn’t show them all she knows . They agree she’s made progress but not fast enough.
    They are fighting her getting an aid although we know she has the right to one but the question my husband and I have been wrestling with is whether we fight or take her elsewhere. . The pre-k teacher isn’t the greatest . But I know surely she won’t be the first or last child with ds . Thanks for sharing your insight . You rock ! And we have lots to think about .

    Sara

  6. Amazing! I to have lived East and West Coast. Fairfax County, Virginia and San Diego, CA. His preschool experience in VA his teacher even came to our house 2 times a month. Then we went back to San Diego and he went 2 hours a day and then moved to a self-contained classroom. 5th grade, back in VA, he has the most amazing team of teachers, mainstreams and his last IEP was a love fest. It should always be like that. Thank you for reminding us to keep fighting to help those coming behind us.!

  7. I have to second what Sara said above. How do you make that choice of staying and fighting or leaving for better services? My child was suffering and HATED the placement. While I fought what would have happened to him? I chose to leave and my child has blossomed in our new setting. Still, not a day goes by that I don’t think of going back and fighting. Those kids deserve and need better services but I don’t see the way to change any of it from where I’m standing and it makes me feel like a coward for leaving.

  8. I am in Australia but while my son gets services in a mainstream school, in our state, aspergers would not qualify him for any in others. Now a national disability scheme is o the table. It is to cover «most« people with autism. Nobody here knows what that is going to mean for those kids who “just” need some extra help for complete inclusion.
    All the best, fighter..

  9. I am right there with you! When I think of the junk I swallowed before we learned our rights, I could throw up! And I, too, ride to IEP meetings blasting Pearl Jam in the minivan! Although, I prefer “Not for you” and “Rearview mirror!” We had an amazing advocate who taught us SO much, and she always said, “we aren’t just doing this for Finn, we are doing this for every kid after Finn, too.”

    I am on board! Whatever you wanna do to help other parents! I’m in! I don’t think people realize how empowering knowledge can be! You don’t need a lawyer, just some information and a strong spine!

  10. I know how you feel about resisting having to move from a great place to a potentially bad place. My husband is in the military and we have moved several times and each time I have to hope that my special needs son will get what he needs. Supposedly they are not supposed to send us to places where he can’t get the stuff he needs but that has not been the case. I dread moving.

  11. Great post, Lexi! We’re just venturing into this world and already finding that our district is not super excited to include Dasha. We’re getting creative for school for next year to help her catch up for lost time and actually feel pretty good about our decision – but we have yet to find out from the school district what they will actually be offering her.

    Anyway, more importantly – you’re moving back to the PNW!?!?! Um hello, road trip to Oregon??

  12. Where on WA are you going? Ella has been in a fantastic integrated program with our school district in Spokane Valley for 4 years now!

  13. Doing it here in Cali! It is a rough road but oh so worth it when you finally arrive in the place you know your kid belongs. Good luck to you and your family Lexi!

  14. kay stambler.

    look her up. she is largely responsible for sped law in the state of vermont. one angry mother makes a difference.

    many children owe her much.

  15. hey, hi.

    it’s me again.

    today i unexpectedly ran into kay stambler at a party.

    i hadn’t seen her since i was about 15 years old, which was a long time ago.

    and i said kay! it was just yesterday i invoked your name! and i told her about you and about your struggles with IEPs and services that have no parity from state to state.

    you really should look her up. if you do, tell her i sent you.

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