On a Different Page

Posted on November 14, 2017 by simpleijustdo

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One of the downsides to living where we live is that it is difficult to find some kinds of medical care for The Boy. Medicaid covers quite a bit, and I am so, so grateful. But not all providers take Medicaid. There is basically one dentist we can go to, who is awesome – Thank heavens! And I have found exactly two counselors for therapy, both a bit of a drive from home.

Since one of The Boy’s major anxieties deals with absences from school (usually other students and teachers, because he never misses school), we eventually settled with the one who offered evening appointments, because missing school when you are anxious about absences is not an option.

The problem is, this counselor claims to have experience with kids on the spectrum, but I’m beginning to have my doubts. She told me last night that her brother has ASD, and I immediately thought of my ex-husband who knew he would be a great dad because his sister had 10 kids (at the time)… correlation not causation.

Red flag #1: She used the word “coddle” when asking if I could have “put my foot down” in the following situation. Grammy, Poppy, The Boy and I were on a long weekend getaway. Our hotel had spotty WiFi that The Boy had difficulty accessing at all. A meltdown was brewing, so we checked out and went to a different hotel. According to the counselor, she thought that I was “coddling” The Boy, and wondered what would have happened if I had “put my foot down.” I looked at her and said, “Most assuredly a meltdown that could have included a violent rage, possibly involving other patrons and property of the hotel.” No WiFi = not an option, and I don’t think there would be too many autism families who would disagree with me.

Red flag #2: She continues to ask open-ended questions. For example, last night, she was pulling cards from a “thoughts-and-feelings” game that you would only find in a counseling office, and gave one to The Boy who was reading them aloud. “What is the worst thing that ever happened to you?” I get that this is commonplace in counseling. Treating patients with autism may require a little more finesse and effort on the part of the counselor to get at what the kid is thinking without him parroting back whatever you said – I’m sure it can be done. Asking him to answer that question? SMH

There have been more, but I think you catch my drift with these two examples. I’ve decided to continue with her because A) there is literally no one else, and B) she doesn’t appear to be doing him any harm, yet. He likes her, and I think he enjoys having another outlet. But I’ll be monitoring the situation closely. She was headed in a very wrong direction regarding something else last night, and if I begin to feel uncomfortable, I will pull him, and we will continue our search anew, possibly driving further to see someone with weekend appointments if such a unicorn exists.

Suffice it to say that access does not equate with quality care, and I wish for the sake of our kids that we Americans cared more.

The Caretakers

Posted on January 13, 2016 by simpleijustdo

My dad had a stroke in the wee hours of New Year’s Day, and thankfully, as mom put it, I didn’t have to hop on a plane with an infant this time. It was still a series of trying, worrying days. Dad has recovered quite well, but is definitely requiring more care than before.

Poppy and The Boy

This time, I stepped up to make some phone calls and communicate with family. Invariably, it was a woman on the other end of the phone, as we are caretakers by nature. But for each generation, for each branch of a family, it tends to fall on one person’s shoulders. I spoke to my cousin, and my aunt, and before them it would have been my Aunt Mickey, and my Great Aunt Rosie. There are those in whose arms the rest of us seek comfort and care.

I am already a caretaker, and have been since the minute my son was born. I became an even stronger one the day he was diagnosed with autism. I knew when I married a man 17 years my senior that someday I would be his caretaker, and being an only child, I know that I will be taking that role with both of my parents, as well. This is not being a martyr, this is not being a nurse – I’ve already warned all and sundry that I will not do diapers again. I’ve done my time. This is being a steward for the care of others when they are not very able to do it for themselves, and I take this transitioning role on with open arms, a full heart, and a laser-sharp mind, honed by many years already dealing with hospitals, therapists, and educators.

There’s no one more qualified, ready, and willing.

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Are you a caretaker? What insights and advice can you share in the comments?

An Awful Weight Lifted

Posted on September 26, 2013 by simpleijustdo

Over the past month, I’ve become quite close, almost best friends, with a feeling I’ve never had to feel before. Because I was always a teacher, and had been for years before The Boy was born, and because (at least where and when I taught) teachers usually had a fairly decent benefits package and fairly decent pay, I didn’t ever carry the heavy weight of worry about providing for my child.

I know how lucky I was, and I knew it then, but I did work hard for that security, and we weren’t always absolutely free from worry on that front. With the ex doing our finances, there was always worry, but there was always the reassurance of another paycheck on the horizon, even if it was already spent. There was also a time when our district slashed our benefits, and all of a sudden, our all-important speech and occupational therapies were no longer covered. It was a struggle, but we managed. We only got sued by a hospital once, so victory for us, I s’pose.

Today, as I walked out of the Department of Social Services office, where a kind lady had explained to me, “Yes, those mailings you received do mean that your son has full Medicaid coverage,” I took one of the deepest breaths I have taken in months.

No matter what happens, he has a roof over his head, and the medical care he needs.

And now, I don’t have to spend any more emotional energy on that heavy worry, and can concentrate on finding a decent job.