Let your voice be heard

May 3, 2014 § 29 Comments

Saturday, May 3rd at noon, my pal Joel Elliott will start riding in circles; actually in “L’s.” He will be riding his bicycle for 24 consecutive hours to raise awareness for his daughter Hannah, who has selective mutism. Joel will be riding to bring attention to the failure of the Torrance Unified School District to properly address Hannah’s needs. 

Joel’s goal is to ride at least 328 miles in that time. Of course I know Joel as being pretty much a wanker, so the 328 miles is hopeless … but what he’s riding for is not!

Hannah suffers from selective mutism, a rare condition that renders her unable to speak. Even though the Torrance school district agrees that Hannah qualifies for special services, they refuse to consider the advice of experts in formulating an individual education plan to help her. This is like someone saying, “I know you’re an Olympic caliber athlete, but you don’t need any special training in order to get there.”

In other words, cheap-ass bullshit.

Selective mutism is fully curable, but it takes time, patience, lots of love, and the right kind of help. With selective mutism, the wrong kind of help makes it worse. The district certainly understands this, but due to its inherent cheapness or its unwillingness to treat each student as an individual, it is unwilling to meet Hannah’s needs.

In a very real sense, her life is at stake. When treated properly, 99% of selectively mute children begin to speak within two years, but Torrance Unified doesn’t seem to care.

This school year has been extremely difficult. Though Hannah’s teachers have been amazing, the principal and the district continue to generate obstacles for Hannah.

Another parent recently reported that earlier this year, her daughter found Hannah on the playground, surrounded by a group of older boy who were abusively bullying her. Hannah was standing with her hands over her ears as tears streamed down her face. The other little girl stood up for Hannah and broke up the abuse, and though the matter was reported to the principal, the school has never reported the incident to Hannah’s parents.

This is just one example of how a child with developmental issues, a child who is fully capable normal adjustment, has been thrown under the CYA bus of Torrance Unified.

Joel’s ride will take place on the 1-mile industrial loop just outside of the Strand Brewing Co.’s tap room, on the famous TELO crit course in Torrance. Everyone is invited to come help Joel kick off his ride. Hannah needs a voice. We can all speak for her, by speaking from our bikes.

§ 29 Responses to Let your voice be heard

  • Erik says:

    Very compelling, Seth. And sad to hear. I would have thought california schools were more progressive. Here in New York, they’ll give a kid an individual plan for behavioral problems, like chronic lateness. Well, not really, but it’s almost that out of hand.

    • fsethd says:

      What’s funny is that every person has special needs. We’re not cookie dough to be shaped with the same cutter.

  • New Girl says:

    Hannah cannot speak, but we can ~ even if some of us ever so softly. Supporting a beautiful child and her parents while riding your bike? What could be better? Thank you, Seth, for writing this important piece. See you all there.

  • Arkansas Traveler says:

    You gotta love that institutional paralysis. “Oh gee. That’s terrible. We’d really love to help, but instead we’re going to do nothing- hunker down- and cover our own asses”. Unbelievable.

  • Winemaker says:

    Exactly the same situation occurs in School Districts across SoCal and the country for that matter…My kids went to school in the Saddleback school district in Orange County and while my son was autistic, athletic, and VERY quiet (in other words, kids liked him), my daughter was severely ADD (no hyperactivity component) and what you have written is nearly exactly what occurred to her from K-12. I mean, EXACTLY.
    School Districts (and their principals) are in the ‘business’ of witholding benefits, not granting them. They protect their budgets naturally and they receive so much pushback (including verbal abuse) from parents who want their ‘normal’ kids to receive 100% of the budget, that they have let themselves become special-ed misers. It is a shame. So what is a parent to do (if you are not willing to bankrupt yourself in providing your child with the appropriate therapies and paying for attorneys and physicians to attend each and every IEP meeting)?

  • Tom Paterson says:

    Gist of story from a school counselor who was forced to “work within the system” to be allowed simple elevator use (two-story high school building) for her special needs daughter: “When I pulled my recording device out, set it on the meeting table, and turned it on, they (the gathered teachers, principal, other school service providers) were very surprised, and not pleasantly so. They knew right then I meant business”.

    A one-mom steamroller, that woman. She knew the rules backwards and forwards and was not one bit shy about getting what was properly due– which she emphatically succeeded in doing.

    I was happy to have her on our side, me and my own special-needs children. We got a lot of voluntary help. Yes, there are laws, but that’s only the first part.

    You gotta do whatever it takes. Including riding bicycles and airing dirty laundry on social media.

    Sometimes the transition from old ways of thinking to better, new ways is a little rough. People need help sometimes, from the unthinking bullies in the schoolyard to the CEO in the Principal’s office.

    Success to Hannah, and those who follow her.
    Please make sure she knows that people she doesn’t know are on her side.

  • dan martin says:

    Heres what pisses me off…TUSD spends hundreds of millions rebuilding and renovating its schools with my tax money, yet fails to spend the money to help a little girl thrive in the educational system.

  • Spencer Yee says:

    Our Daughter has Selective Mutism. We had her diagnosed in Philadelphia by Dr. Elisa Shipon-Blum who became a Dr trying to help her own daughter when the schools labeled her as “shy” or “not smart.” Many people do not understand this condition and say they will just grow out of it. However, like you said It takes specific training and the support of the schools and teachers to work with the child.

    Our daughter Olivia is going thru the PV school system and its like pulling teeth to get her help. Fortunately, we acquired tools from Dr. Shipon-Blum to work with the teachers in the classroom setting.

    Today Olivia is doing much better from Kindergarden not being able to speak up to go to the bathroom and having an accident. To now doing Power Point presentations in the 3rd grade. With a lot of hard work and patience and still working on it…

    Thanks for getting out the word on this little known Anxiety Disorder called Selective Mutism. We’ll be going out to support Joel.

  • The Other 98% says:

    Hope the ride draws the attention needed to expose this negligence.

  • Morgan says:

    My son has Angelman Syndrome, lack of speech is among the many severe disabilities that comes with it. While raising awareness is always a good thing, Joel needs to hire a lawyer and contact his local Regional Center (if he hasn’t already).
    California is considered one of the best states to live for special needs care, and many families move here for that reason, but as mentioned above the school districts want to protect their budget so you have to fight for it. We hired an attorney that specializes in these cases and one letter from her and the Culver City School District was bending over for us. We got everything we were asking for, including hiring a one on one aid to work with our son because he can’t be left unattended.
    The Regional Centers will help you find the outside [the school district] services you need and help pay for it if you can’t afford it or don’t have the insurance coverage.
    It also seems that the pushback may be a bit of an urban issue as we now live in a smaller area up in NorCal and the school district has been amazing.
    Sorry I am not in LA this weekend to show my support on the ride. Good luck to Joel

    • Morgan says:

      To add: Most of the system is set up to deal with Autism and Down Syndrome, so when you turn up with something rare that no one has heard of like Angelman Syndrome or Selective Mutism it really throws them for a loop and you often have to a lot hand holding to get what you need.

    • fsethd says:

      Thanks, Morgan!

  • Rick says:

    The sad truth is this is common in public schools. My son had dyslexia. He was diagnosed in 2nd grade with this condition. It came to our attention because he thought he was stupid because he could not read as well as the other kids. It was very sad as a parent to hear that. After having him tested it became clear what the problem was. The public schools would make no accommodation. I was fortunate enough to be able to afford private school. He got on to the right academic track with tutoring and accommodation. He recently graduated from one of the top technical universities with a double major in math and physics. The lesson here is do what you need to for your children.Advocate advocate advocate for your kids because nobody else cares like you do. But also, don’t be naive and don’t expect a leopard to change its spots. Be prepared to make the personal financial sacrifice to make sure your kids get what they need to succeed. Seth, good to you for raising awareness.

  • jorgensen says:

    All the local school districts are attempting to do as little as possible vs. what is worthy for special needs students. The Districts call it “encroachment” on the budget, and drag their feet. Two ways to deal with this, fund it yourself, (which as parents of a SS child is the way we went so we could control the effort, but not cheap and I realize that) or what is called due process, get an attorney versed in Special Needs cases and knock them flat for what is needed. I will state even if that is achieved, the school can only do so much in the time they are responsible, a comprehensive plan that includes the school is required, the school should communicate with the parents weekly to keep things going, that can get written into an IEP, they won’t want to but it really helps.

    As to bike content, my son never turns down a chance to ride with Dad, I hope it always stays that way.

  • Jim G says:

    School Districts far and wide choose the easiest path these days. My wife and I have had to fight it out with our district on my sons behalf to make sure they do the right thing. Once we presented the laws showing what they were supposed to do (and let them know my very successful attorney friend was in our corner if we needed), they finally stepped up and gave him the personal aide he needed. Ever since, my son has done amazing. Tell Hannahs parents to fight with everything they have. In the end, they will win.

  • Joel says:

    Thanks Seth for this post. Because of it, I got to meet some amazing people. They came out and rode with me and told me their own stories – stories that sounded very familiar to mine. They kept me going because it became clear that this isn’t just about Hannah, this is about how we take care of children as a whole.

    I was only able to reach such a hopeless goal because of the support from the community – friends and strangers alike.

    When I started this ride I was just a wanker. Now that it is over, I am a wanker with renewed hope, who has been completely humbled by the kindness of others.

    Incredible.

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