The Ballad of the Bedeviling Bedroom

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See that picture up there? That’s my boy (fourth child, third son, 11 years old), trying to go to sleep in his new bed in his new bedroom. We moved just about everyone around this past weekend. Usually, I would balk at such a thought—ASD kids have a hard time with transitions. But this was a pretty important move for a couple of reasons that I can’t get into right now.

Anyway, this poor boy was having a hard time with the change. He was excited to be moving to his older brother’s (third child, second son, 13 years old) room. The two of them had been roommates a few years back, and they had a blast together. But once he got into the room, he couldn’t cope. Within five minutes of Katie and me praying over him and giving him a good night kiss, he was back in our room, eyebrows knit, hands wringing, voice aquiver. Continue reading

Make Some Noise—Save Medicaid!

This is not intended to be a long post. In fact, it’s going to be very short. Not only is my friend at The Spectral Zone another autism dad, but he’s also a lawyer, and he is very familiar with legislative texts. He has read through the draft American Health Care Act (AHCA), also known as Trumpcare or Paul Ryan’s proposal for the repeal-and-replace of Obamacare. Spectral Dad has found some pretty disturbing language in this bill, language that would restrict or eliminate altogether the Medicaid benefits that many people with disabilities (especially those with autism) are currently receiving. 

I urge you to read his brief analysis of the bill, which is in his blog post here. I also urge you to contact your senators and congressperson to register your concerns about this imminent threat to the autism community—and the disability community at large. Spectral Dad has also included in his post a template for a letter you can write. Feel free to copy his as much as you can, or use it as a starting point for your own words.

The Medicaid provisions in this bill have a good chance of passage unless enough of us stand up and make some noise about it. So get out your pen; dust off your keyboard; pick up your phone. Whatever you do, do it now! From what I understand, the House is planning on voting on the AHCA this Thursday. Time is precious.

Failure Is Not an Option

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A couple of days ago, I posted a picture of my oldest daughter and described her struggles with anxiety and school. I talked about how proud I was of her for fighting—even when she is fighting me. Although it looked like she was being obstinate and resistant, I could tell she was getting the message that she can’t give in.

Well, now it’s my oldest son’s turn. Continue reading

The Struggle Is Real

 

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Remember my story about my girl having a couple of seizures last summer? Remember my story about how hard it was for her to go to Mass during the summer? Well, the saga continues to unfold. Continue reading