Liar, Liar Pants On Fire & Tattoo Girl

So finally after six months of being without a care provider for Hayden, we found one. After fits-and-starts with Care Provider Agency #2 (after Care Provider Agency #1 provided nothing and no one since the end of July), they brought someone by for me to meet. I should say right now (in beautifully crystal-clear, living-technicolor hindsight) I can now see and almost feel in the pit of my stomach, the fact that I did NOT listen to my instincts. Oh, they were talking to me all right but I was just so desperate for help with Hayden that I pushed aside those pesky feelings of doubt and forged ahead in my trademark, confident-despite-facts-to-the-contrary sort of way.

My first clue that candidate #1 (who later earned the moniker “Liar, Liar Pants on Fire”) was not “the one” was when the case manager from Care Givers R’ Us had to ask if I could go get Hayden so “Angela” could meet her (by the this time in the interview it would have been a timely, if not expected request on the part of the candidate who was in my living room, presumably to interview for a job). So I retrieved Hayden from his lair where he was snuggling with his Dad (namely the guest bedroom that we’ve called “home” since coming up to my beautiful homestate for a visit nearly two years ago) and presented him to the candidate. Looking back I can now characterize her introduction to Hayden as rather stiff and aloof. Then I just thought she was a more reserved and contained person and that she would warm up after she got to know us all a little better (afterall, I told mysel, not everyone on the planet walks into a room and starts talking up a storm like me….thank the good Lord).

I also ignored the fact that she didn’t have any experience being a caregiver for children…..much less children with disabilities. Let me stop right here and introuduce myself a bit before any incorrect assumptions are made. My husband Jeff and I have two great gifts: a son and a daughter, bonafide gifts straight from God. We believe whole-heartedly that God chose these kids for us and that together we make a perfect, if albeit different-from-run-of-the-mill, family. Our oldest son, Hayden, is now 8 1/2 and has Down syndrome, (among some other challenges which we’ll get to later). As a result of his development delays and (depending on who you talk to) disabilities, he has access to what’s called a “caregiver”. Kind of like a babysitter, but really more of a teacher/companion to be here with us and sometimes without me to help Hayden with things like potty-training (don’t be shocked: there are many kids with disabilities who do not have bladder control. With all the challenges that comes with low muscle tone (a direct result of the extra chromosome on the 21st gene, which is Down syndrome) and the sensory issues that go along with low muscle tone, it often takes quite awhile to master toileting skills. Despite your first reaction, or maybe what you’ve heard, it’s not a “parenting issue” and kids with DS are NOT “being babied” when it comes to this topic). Anyway, the caregiver is a position that can be a great, great help to the entire family. While Hayden is complete joy and the light of my life, there is a vigilance associated with caring for a child with disabilities that can have a comulative exhausting effect on the primary caregiver (a really fancy way of saying that Moms get burned out and tired after finding their 8 year old son playing in the toilet for the 15 time that day and it’s only noon, and Mom grows weary of spoon feeding her 17 year old son with severe CP). So from time to time, we need help. I’m NOT whining or complaining and if you tell me “Well you knew what you were getting yourself into” (and it’s been said to my face before and you know who you are), I will rebuke you in an instant. It’s just a fact that caring for a child with disabilities takes extra of everything: time, patience, energy, willingness to be fully present in the moment, and great amounts of determination to not let the idiots (case workers, teachers, therapists who want to waste your time talking about your child’s Gymboree outfit rather than work with your child who sits ignored on the floor, ignorant and mean spirited family members and strangers in the grocery stores) get you down. You get the picture.

Back to our regularly scheduled program: so we were (are) looking for someone not necessarily a legend in the field of children with disabilites but someone with heart for children and someone who believes that all children can learn. It’s easy to say, not so easy to find (hence the phrase “easier said than done”). Apparently it was easy for this candidate to say to because she convinced me that although she didn’t have any experience with little children, she loved children and had a niece and nephew that she doted on. She said she was very affectionate and demonstrative (something I said was important to be a part of Hayden’s “inner circle”). So we agreed that she would be our caregiver. That was a Friday and she agreed to come by Monday morning and go with us to our Monday round of therapies for which she would be present to get better aquainted with what Hayden was working on.

By Monday morning I gave her a call to tell her that Hayden was now sick with a cold (kids with DS often struggle with head colds and congestion because 1) they have depressed immune systems; thank you extra chromosome and 2) their sinuses and nasal passages are quite small compared to their typical peers) and would not be attending his usual therapeutic regimine. I told her she was welcome to come over if she wanted and we could get her aquainted with what we do here at the house. So she showed up for what I presumed to be our previously agreed to time allotment: 10am-1pm. But right after coming in the door she informed me that she wouldn’t be able to stay the whole time because, “The office really needs me. They’re having people from the state come in and there’s a lot going on and they just really need me back there as soon as I can”. That was BIG HINT #2 that this arrangement wasn’t going to work out. But I thought, “Maybe someone did tell her she had to be back at the office (she was hired as part care-giver/part office person to fill in for my case manager who is due to leave on maternity leave in the next few weeks) and I can just talk with the office later”.

After a whopping hour on the job Angela, who by this time had changed her name to Beth (at the end of theg interview she said her real name was Angela but sh’es always gone by Beth…..”whatever, just tell me what you want me to call you”, is what I thought.) said she needed to leave by 11:30. I needed to run to the grocery store so I left and was back in 15 minutes. By this time she said the office had called her in my absence and told her that it was imperative that she return to the office immediately; the place was just in complete chaos and they desperately needed her. “Wow”, I thought, “She’s only been on the job :15 minutes and already she’s indispensable. Either that or dillusional.” My money was on choice B but I let it go.

I used her Tuesday without incident, although I had this nagging feeling that she was using Hayden’s malady as an excuse to do absolutely nothing with him (I left with her explicit instructions and dozens of choices of activites to do with him). When DP and I returned home Tuesday evening after an afternoon away, the place looked oddly “untouched”, like everything was where it was when we had left a few hours before. That’s not how the house usually looks after Hayden’s been in it for the afternoon. Usually you can see his trail of books, favorite toys (the ones that make music) and odds and ends around the place. I convinced myself that she had already picked up everything by the time we got home after DP’s ballet class.

Wednesday was the day I really needed her. I have a weekly volunteer commitment to which I had already taken the children and I hated to do it again, especially with Hayden under the weather. And my sense of duty to my own committment won out over common sense. I was also desperate. I love my children more than anything in the world but it had been months since I had had even the shortest of breaks away from them for ANY length of time and I justified leaving him with her because she was over all a pleasant person and Hayden was safe. He didn’t look especially happy and joy-filled but he was sick, so who would? So DP and I were off for most of the day. When we returned a little after Noon, Angela-er-Beth seemed a little startled and off kilter by our appearance. I told her we were just stopping to drop off some things and pick up one of the dogs to go run some errands. While standing at the counter I saw a broken DVD. She said somehow it had broken, “Probably Hayden sat on it” and she was sorry. Hmm, I don’t remember giving her permission to use the DVD drive in the laptop computer sitting on the coffee table. In fact I don’t remember saying she could even touch the computer, much less use it for entertainment purposes. I stuffed that nagging doubt down deeper this time and off we went for a couple of errands for a couple of hours. Hayden remained on the couch. I was beginning to think maybe she had bolted him there sometime during the morning.

When we returned (ten minutes early I might add) she looked visibly relieved, as if she were handing off a twenty pound baton in some invisible foot race. Before she took leave of us though she informed me that while I was out the second time that day the office had called yet again with yet again another “office crisis” and that they wanted her back there immediately. She said she told the office that The Mom (that’d be me) was out and that she couldn’t leave right then”. So then she proceeded to tell me WAY TOO MUCH about the inner machinations of The XYZ Care Provider Agency including the fact, that she would probably be called back to the office frequently over the next two months, “just because things are so crazy there”. And then she added, (don’t miss this…it’s a BEAUTE), “And I can’t just leave Hayden (she glances at him as he sits on the floor playing with a toy)”. I just nodded and added some non-commital “uh-huh”s. Then she said, “Well your dad is here, maybe sometimes he can just take over when I leave”. “Hmm”, I nodded. By this time we’re at the front door and I really hope she has EVERYTHING she brought into my house because SHE AIN’T NEVER COMIN’ BACK.

What in the name of all that is right was that??? That whole thing is what I now refer to as “Not Better Than Nothing”, thank you very much. I think the owner of the XYZ Care Giver Agency’s ears have stopped burning by now. I gave him such a piece of my mind after Angela-Beth left that day that I thought I had truly used up my last six brain cells for the rest of that day.

Next installment? Tattoo Girl

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