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Life on the Spectrum: When the Universe Calls, You Pick Up

blog march 2016Many of you know that I have a grown son on the spectrum. You can read about our journey by following this link.

If you’re a regular reader or blogger you also know the amazing connections we foster around the world, and the tremendous support that flows from our blogging community.

On March 8th I received a private email from Pauline at The Contented Crafter.

Pauline had just read a post from her friend Sherri who blogs at A View From My Summer House.  Sherri’s adult daughter is also on the spectrum. Moved by Sherri’s recent post, Pauline put me in touch with Sherri via her blog.

Here is Sherri’s story.

About a week later, Marlene at In Search of it All also sent me a private email, this time about an autistic child and his mother, struggling to keep her son Ben in school. The story is similar to ours in many ways, an uphill struggle of a mom trying to do the right thing for her child. Ironically, Marlene saw the story when another writer blogged the news of Ben’s plight.

Garrett Winter, a writer and an adult on the spectrum, shares the plight of Ben and his mom Tricia in this post Help Me Get Ben Back to School

And finally, here is Tricia’s heartfelt post.

I’ve reached out to both of these moms, and to Garrett as well. I’ve also donated to the GoFundMe campaign set up to cover some of the legal costs she is now facing, simply to get him the education he deserves.  I know from personal experience that many of these school administrations are condescending, hostile and uncooperative, and at times violate the law by obstructing a child’s right to a public education. The fact that the family had to set up a fundraising page to raise money for legal help so her child can go back to school is infuriating.

Just last week my son’s former high school district invited me to speak to the board of directors at Campbell Union High School District. The executive director of special education put together a presentation on their program’s successes, and I was one of three guests invited to speak. Unlike our obstructive elementary school district, Campbell Union provided services and support to ease our son’s transition from a non-public school to a fully mainstreamed high school. He thrived because he got the right kind of support and because people cared and understood his needs while at the same time valuing  his strengths. He is currently attending university.

Campbell’s model should be shared with other schools and programs. Funds should be available to help all children succeed. After all, our children are the future. When they do well in school, everybody wins.

Garrett, thank you for sharing Ben and Tricia’s story. Tricia, don’t give up. There are lots of people who understand and support you. Sherri, my heart goes out to you.  Please know that people like Pauline, Marlene, Garrett and others you’ve yet to meet are pulling for you.

 

12 thoughts on “Life on the Spectrum: When the Universe Calls, You Pick Up”

  1. Fabulous Alys – you have done such great things with both your sons, and in your community and in the blogging world …….. You lead by example and can be a wonderful support to anybody facing these issues. I’m so happy you connected with Sherri – she too is quite special!!

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  2. I think the word ‘infuriating’ is wholly accurate. I can’t imagine why the elementary school representative were so difficult to deal with. I can only guess they earned some type of financial bonus if they didn’t spend the budgeted funds. I’m sorry that you were made to go through that Alys. You have to be the squeaky wheel to get what you need and that’s just bass aackwards. I’m sure the parents you’re reaching out to will appreciate your knowledge and compassion as they struggle with similar problems. You’d think after a decade or more it would’ve change and the bureaucracy would catch on, obviously not so. xo ❤

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    • The way this was once explained to me was that the laws are federally mandated but not funded, or funded inadequately. So states, counties, cities and ultimately school districts make the determination. Money should never be part of the equation, but everyone knows it is. They denied us so many services that I later learned they had no right to deny. We paid through the nose for many of them because our child needed them. This means that we paid twice, since our property taxes fund public schools, then we paid again for additional services not covered (or more accurately denied). You are dead on: the squeaky wheel gets oiled, but only after several trips around the block and a few crazy maneuvers so that everyone knows you’re serious. Reading Ben’s story today made me mad. I know what his mom is going through, and I know how cruel children can be, too. C. had a near identical experience. He was taunted, then pushed, then *blamed* for fighting with three boys. In the end they had to write notes of apology, but that didn’t reverse the damage done. We simply had had enough by then.

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      • ((Alys)), you really give hope for the families now wearing those shoes and navigating the quagmire. I can’t understand mean children, except to think, they’re immature and can be taught to be kind and welcoming. But adults are a different story. For them, there’s no excuse. You probably see the same news we do for this election. It’s obvious there’s a segment of society that is so unaccepting of anyone who is different than them. It’s really a sad thing that they have so little compassion and think so much of themselves. I guess that’s a narcissist. Seems there’s no shortage of them around. So many challenges to rise above, and your family has been brave and unrelenting. Now Chris is in College! Bravo! Much love to you all ❤ xo

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        • Thank you for your love and support.

          I am so turned off by this year’s election and the hateful, hurtful people that think they have anything to offer this country. They’re not leadership material by any stretch of the imagination.

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  3. I am so glad Pauline put you in touch with Sherri. I thought about it but let it go because Sherri was not asking for assistance. I know you are an organizer by vocation but I’m seeing a higher calling here. The synchronicity is too heightened to be ignored. I can honestly see you on capital hill demanding funding for all of this. I think you can be the force to be reckoned with. There was a hesitation to put this on your shoulders but something said you would pull everyone together. That’s just me having my thoughts on this. :))

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    • Marlene, I thought the synchronicity was heightened as well. Extraordinary really. I would love to go to capital hill and plead the case for better funding, better supporting, training, understanding, all of it.

      I’m delighted that you reached out, and you did it in such a nice way as well. It was meant to be. xo

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