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Repost: All the parenting hats

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Re-posting from my other day job.

All the Parenting Hats

Some days it feels like being a parent requires me to be a general education specialist, a special education expert, a psychologist, a neurologist and neuroscientist, a geneticist, an education law specialist, a diplomat, and a hunting dog all at the same time. It is exhausting. But it’s what you do. Will there be a time when I’m not going to advocate for my children and others like them? When I’m dead maybe.

My kids want to go to college. That means it’s my job to make sure everyone does their job to give my children that opportunity. Sometimes that means holding my children to a higher standard than others have for them. Sometimes that means cutting them some slack. It’s a delicate balance that requires knowing the child in question and what best motivates them.

Mostly it requires being present and aware of my child and their needs. It means setting in my mind that they can achieve their goals and working alongside them to make s…

Medicaid Morass

The Medicaid system is byzantine. There is no way around that fact. Issues with Medicaid have plagued those of us living with disability for decades. But it’s nice to see that others are beginning to notice problems with Medicaid to wit, “The new healthcare bill could worsen the stigma of special education.” Of concern here is the possibility of a loss of $4 billion over the next 10 years earmarked for schools to help children with special needs. Without Medicaid, support services as well as educational outcomes for children with disabilities may suffer. In a report from January of this year, AASA, the School Superintendents Association, made clear how dire the situation could get. Health and wellness, therapy, and nursing services will be on the chopping block, as will the jobs of staff whose salaries are paid either in part or in full by Medicaid reimbursements.In a letter sent to top lawmakers on May 2, a non-profit organization comprised of members from the nation's school dis…

Town Hall Fun

I appreciated the opportunity to take part in the live broadcast town hall on Monday, May 15, 2017 with my congressman John Katko. The event wasn’t earth shattering or game changing. It was a good start for a new way to do public dialogue with elected officials. I’d love to get state and local elected officials in that kind of format.
Here are the questions I had prepared for the evening but did not get a chance to ask. (News coverage here, here, and here. Plus protest coverage here, here, and here.)
Medicaid Medicaid fraud prevention measures do a poor job of preventing fraud. Instead they make it harder for people who need services to get them. How would you address this problem at the federal level? Medicaid reimbursements to service providers are notoriously low. This leaves people with limited options for care. It is a perennial problem for people with disabilities who need specialized care. Central New Yorkers are currently faced with a limited number of providers forcing families t…

The Death of a Child: Blame shifting and lack of transparency

8-Year-Old’s Suicide Leads Cincinnati School to Release Video Showing Bully Attack
This is the stuff of parents’ nightmares and it hits close to home for me. I had a similar experience with one of my children. It involved school staff rather than another student. My child is alive and well but I understand the outcome for my family could have been what Cornelia Reynolds is now experiencing. The school made no mention of the incident to the boy's mother, Cornelia Reynolds, only telling her that he fainted, said Jennifer Branch, an attorney representing Reynolds, adding that they learned about the surveillance video months after the attack in January.But because the mother didn't know what happened, the doctor at the hospital didn't either, which changed the nature of the medical examination, she said. "If she had known he had lost consciousness for over 7 minutes, that is a critical detail for a medical professional to know," she said.Reynolds found out about the bu…

Mother's Day Tenacious

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Mom has taught me a few tricks over the years. The most important lesson she has taught me is to fight for family. Here's to many more battles fought and won.

Everyday Thankful: My Autistic Children

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April rolls around every year and every year for autistic folks, their families, and friends we become the center of a media frenzy. Some welcome this some not so much. Lost in the hubbub though is the fact that life is precious and beautiful especially when me make conscious decisions to make it so for our autistic selves, family, and friends.


Not Alone

This really seemed to hit a nerve for people when I shared it on Facebook today, “20 Diversion Tactics Highly Manipulative Narcissists, Sociopaths and Psychopaths Use to Silence You”. It seems quite a few of us have crossed paths with highly manipulative self-centered people in the flesh. People who try to control us, make us over as they see us, distort our sense of self-worth, lay waste to our character, and leave us questioning our sanity. Some of us have been broken by the slow seeping poisoning of our lives by these people. Some of us have been broken and made whole again. Some of us are still a work in progress. Some of us are just beginning to realize the truth of what we have been living with.

Wherever you are in the process you are clearly not alone.

Wisdom and Innocence

Tonight, Friday, November 13, 2105, there is terror in Paris. At home we are at heightened alert lest the same terror seize us unawares. At our colleges and universities mobs have been gathering demanding conformity to their will and their ways. We have watched as we burned our own cities. These are just a few of the more eye catching woes that beset us. What is a Christian to do in the midst of this kind of chaos?
Matthew 10:16 16 “Behold, I am sending you out as sheep in the midst of wolves, so be wise as serpents and innocent as doves.”Wisdom, shrewdness or prudence, and innocence, an openness to what happens in life, both require constant vigilance to cultivate and protect in the right balance. Both are required to see clearly to the heart of the challenges that we face. Lean too much on one or the other and you leave yourself open to being easily deceived.
Philippians 4:4-8 4 Rejoice in the Lord always; again I will say, rejoice.5 Let your reasonableness be known to everyone.The Lord…