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Back in Time

  • Posted on July 17, 2014 at 10:00 AM

A friend came to visit while I was sick. I tried to stay away, but she poo-pooed that idea. I met her twins—a boy and a girl—for the first time (at least it was the first time I could remember). They’re fifteen months old and their adventures made it perfectly clear that our house was no longer baby-proof.

Over ten years ago, I went on a journey of discovery. I found Birth to Three, I found a doctor to diagnose first one son, then another. I navigated IFSPs and IEPs. I wrangled with diagnoses, labels, and services. And now I see this friend beginning a similar journey.

She knows she’s “different” and she has received diagnoses of disabilities for herself. Now, she’s seeing herself repeated in her daughter and she’s seeing other traits that are duplicated but different in her son. They both have developmental delays, though they started services early enough that they’re “almost caught up.” They both have sensory issues and may or may not have autism, Asperger’s, and/or epilepsy. (I didn’t see any pronounced signs of any of these diagnoses.)

This woman’s situation is complicated by the lack of a spouse, an antagonistic “support system,” and the involvement of social services. As a person with disabilities, she was vulnerable to the maneuverings of people who wanted CPS to remove her children from her home. Now, she’s taking the hard road back to regaining custody.

Hers is a different journey than mine in many ways. There are things Mark and I have no experience in. There are other things that we do know more about than she does. We can share the wisdom of our experiences. We can empathize with her frustrations and her struggles. We can remind her that, above else, her first job is to acknowledge that her children are different, that it’s okay that they’re different, and that focusing on what is and isn’t normal is not the best way to serve her children.

We can be for her the friend we didn’t have when our children were that little. It seems small, but it’s something that means a lot, at least to us.

Alex is Still a Mystery

  • Posted on November 8, 2013 at 10:00 AM

During the last post, I talked about one of the results of Willy’s IEP. I just had an IEP meeting for Alex, too, which went rather differently. The primary result of Alex’s meeting is that Alex still baffles those of us who are entrusted with his care and education. Big surprise, huh? In discussing our need to grapple with Alex’s needs, once again a resource was brought up for consideration.

This resource first arose when Alex was ending his elementary school education. The facility houses a considerable number of professionals who, over a period of two months, analyze and assess a child more thoroughly than would otherwise be available to determine unmet needs and unknown solutions. It’s an in-patient facility, which means Alex would be living there temporarily.

The first time this came up we were told that it involved signing over temporary custody (or something like that) to CPS. That put a stop to that. This time when it was brought up that was the first thing that came to mind. I told them if that was still the case, then it would never happen, because CPS representatives have already expressed an interest and an intention to institutionalize Alex.

OVER MY DEAD BODY!!!

I mean that literally. There is no way I will allow Alex to be institutionalized for being a mystery while there is a breath left in my body. As long as I am alive, Alex will not be institutionalized. And, to be perfectly clear, a lot more people than just me would have to die before the government would gain enough traction to enforce that option.

Granted, in-patient care is dangerously close to institutionalization. But it’s not the same thing. The differences make it a potentially viable option if the benefits would be sufficiently substantial. But the benefits won’t even be considered if it involves signing Alex over to CPS.

OVER MY DEAD BODY!!!

And, just so there is no doubt about the strength of my feelings on this matter, I’ll let you all know right now that I intend to HAUNT anyone who dares to institutionalize my child after my death.

Yes, my son is a mystery. I’ve accepted that. I understand the drive to better understand this mystery and I share it. If that means we must be deprived of Alex’s company for a month or two, then I can live with that. But I no longer have the luxury of idealism when it comes to trusting the government. The local CPS agency burned that bridge years ago and nothing on this earth can build it again.

Imminent Burn-Out? (Part 4—The Next Word and Resolutions)

  • Posted on November 21, 2011 at 12:00 PM

Again, I knew I was adjacent to the autism spectrum, I read about Rachel’s experiences, and I panicked.

The threat to autistic children is real. The threat to autistic adults is real. Combine the two and the threat becomes even stronger. And these threats apply directly to my family. This is why I fight. This is why I advocate. It’s not the only reason, of course. If my family was suddenly safe from all future threats, if we got a pass on all the discrimination and prejudice, well then I’d still fight—because nobody should have to face this kind of threat. But we do. It’s real. Right now, my boys cannot advocate for themselves on this level. They cannot face down CPS and win. They shouldn’t have to; I shouldn’t have to. But I had to and I did, but if I had to do all over again, with the loss of functioning that Rachel described, I would lose. And that possibility is incredibly scary. The consequences for my children are terrifying.

Reading Rachel’s words, I felt this terrible ticking clock hanging over my head. I drive myself hard—too hard. I know that. Everybody who knows me (in-person) knows that. Periods of burn-out, of being too tired to keep up, of running out spoons, of hiding in my basement office to avoid the very loud noises my children make when they’re all playing in parallel—these things are inevitable, and as long as Mark and I are a team and I can keep up my end of the bargain, they’re just part of the flow of our lives.

But what if I couldn’t keep up? What if it wasn’t temporary? What if it stretched on for months or years? Pardon my language please, but my thoughts could best be summed up: Oh shit! Is that going to happen to me?

I kept reading. I finished The Uncharted Path and moved onto Blazing My Trail and…I kept reading, sighing in relief. While I don’t mean to minimize the significance of burn-out, the dramatic shift in abilities got a new explanation in Blazing My Trail. They were due, to a great degree, to a medication she took that made things worse instead of better.

The relief was palpable. I know with certainty never to take that drug. Besides, I’m horrible about taking daily medications. And I try medication only as a last resort—or after significant experience that it will be necessary, such as with bronchitis and antibiotics. And, well, the only time I found a psychological medication (for example, an anti-depressant) that didn’t provide more side-effects than positive effects was when I had that terrible reaction to a birth control shot that lead to a serious case of post-partum depression. The drugs then were just a temporary fix to get me by until the birth control hormones were out of my system and it was only effective because my depression was more poignantly chemical than usual and far stronger than I usually experience.

So, avoid drugs—check.

But, that’s not enough. She also described a plan that helped her regain abilities she’d feared she’d lost forever. It was simply a matter of taking care of herself and being responsive to her distinct needs.

Now, that’s not as easy or as obvious as it sounds. Not for me. I’d always thought that I should be my lowest priority, after family, God, work, school, friends, etc. I knew I had to sharpen the saw and all that…but that didn’t make it a priority, did it? Not really. Certainly not.

This scared me into reevaluating and reassessing the importance of my own well-being. Because, yes, actually, I am a priority. As a caretaker, I need to take care of myself so I can continue to take care of others. It seems obvious. In fact, I knew it, on an intellectual level. Reading Rachel’s story has made it visceral.

So, take better care of myself—check.

I can’t stop pushing myself. There’s too much to do. But I don’t have to push myself so hard that I break. I don’t have to ignore my own needs and well-being. In fact, if I pay attention, I’ll be able to do more, because I won’t get quite so tired.

But, wow, was it a scary, rocky trip—and I didn’t even have to live through it!

Imminent Burn-Out? (Part 3—My Panicky Aftermath)

  • Posted on November 18, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and then, I read Rachel’s The Uncharted Path. I read about how she once had a lot more functioning capabilities, which she lost, and how she attributed that loss to burn-out.

I admit, when I first read that, I panicked for a good, long while. I wrote a lengthy post in near-hysterics about what Rachel said and what I feared. The post was highly emotional, a bit incoherent, and I asked my husband for his opinion before posting it. He agreed that I shouldn’t post it at this sensitive juncture (a reference you will either understand or not).

You see, it’s not that I’m afraid of being disabled. I’m not afraid of losing the ability to do things that I can do now. For me, unless I die very young, that’s inevitable. I’m a writer and I’m already showing signs of arthritis. I’m 32 years old. I use my hands and brain, almost exclusively to any other part of my body, for hours at a time several times a day, every day. So, unless I die young or arthritis is cured, I will lose the ability to work as I do now. I’ve looked ahead to that future, acknowledged that it will slow me down, and committed myself to not letting it stop me. If I lose enough functioning to be diagnosed on the autism spectrum, I can do the same. It’s not me I’m worried about.

There is a powerful, local government agency that has the authority—with few checks and balances—to remove children from the home of their parents. Here it is called Child Protective Services. For most of my teenage and adult life (the parts of my life that I was at all cognizant of their work), I was fully on-board with their mission. I’ve seen abuse. I know what it does to kids. I’ve seen kids have their lives ruined by abusive parents. I’ve seen some kids reclaim their lives, either as children or as adults. I’ve seen some people who struggle with reclaiming their lives every day of their lives. And I’ve seen some people who either don’t know reclamation is possible or have given up or continue to live in abusive situations their entire lives. I’ve seen it. I know. So, how could CPS be a bad thing?

For the same reason that autism advocacy is necessary at all. I was told: “No family should be burdened with three children with autism.” I was told: “The goal of therapy is to help your children become indistinguishable from their peers.” The person who said these words had tremendous influence with the local CPS agency, and when we didn’t comply with her “suggestions” to prioritize normalization or clinicalize our home, she called CPS—repeatedly. And they sided with her—completely. If they could, they would have removed the boys and put them in group homes for children with disabilities where they would live until they were normalized enough to be put into foster care. This was explained rather explicitly. Luckily, they couldn’t fabricate a case strong enough to make that happen.

But what if I burned-out? What if I became sufficiently disabled to qualify for an autism diagnosis? It would all start up again. The person in question would, if she became aware of it, begin harassing my family all over again. And I don’t think the autism advocacy movements have made enough progress for my family to survive the encounter.

So, I panicked.