In May I got the long awaited phone call from Jenna, my Medicaid Services Coordinator; my request for res hab (known today as Community Hab, but I will continue calling it Res Hab, which is short for Residential Habitation) was approved by the Department of People with Developmental Disabilities. I would be active as of June 1, and could start looking for counselors.
I was about to embark on a new chapter as a parent of a disabled child; a chapter full of wondrous encounters with amazing girls, as well as tearing-my-hair-out situations. Res Hab is a mixed blessing. It provides the family with desperately needed respite. BUT it comes with a heavy price tag. Finding the right girl is about as difficult as splitting the Red Sea. Scheduling the girls is a full time job. The turnover rate is extremely high; In the 19 months since we started getting Res Hab I have been through THIRTEEN different girls!!!! It took me a long time to learn the ropes; it was a huge learning curve, and I would get burned many times in the process. Figuring out how to interview the girls, how to say no, how to gently let someone go when she is all wrong, how to please the girls, how to make sure they dont get burnt out, an above all, how to not let it all get to me was a long, long process. I am still learning. And you know something? I just placed an ad in tomorrow's daily flyer, looking for yet another girl.
Every day I thank HaShem for the existence of this wonderful, wonderful program, and for the devotion of my Res Hab Coordinator, Marilyn. If not for her tireless assistance in helping me find the right girls - although it's really my own legwork, mostly - my life would be even crazier than it already is. Res Hab is the cornerstone to survival of a family with a special child - although it's very, very hard work to keep it all set up and moving along.
I will be telling you lots of tales from the Res Hab trenches. Those of you who were my Facebook friends in the summer of 2011 will remember this one vividly. My blood still boils sometimes over this story. But it was such a lesson for me. It was the ultimate learning experience. If I were to write a book on Res Hab, this chapter would be titled: HOW TO HIRE THE WRONGEST GIRL EVER. In all fairness, I had to learn how to sift through the chaff and find the wheat; I also had to learn how to communicate and interrelate with the girl(s). I have softened since and am not so rigid as I was that first time around. But in the context of the timing - I was absolutely DESPERATE for help, waiting for the Res Hab girl like you wait for Moshiach - that my reactions to the garbage she put me through is very understandable. I want to add from the outset that I bear zero ill will to this girl; it was a very bad match from the start, and since I was learning the ropes then, she was the unfortunate guinea pig of my learning process. Such a story would NEVER happen to me today; by now I bh have a large network of girls to rely on, and I don't allow myself to be strung along the way I did then - if a girl is not a match , I get rid of her right away.
So here's the tale of the First Res Hab that Went Terribly Wrong.
When my MSC told me to start looking, I didn't know how. HOW? How do you go about finding girls who are 1) experienced with the special needs population, 2) patient and friendly and loving to Dovi, and 3) willing to work, yknow, legally? It's hard. Most girls want quick cash jobs; they don't want to compromise their parents' government benefits for a couple of bucks a month. That makes it doubly hard to find someone. Ask any local mom who gets Res Hab. It's VERY HARD.
Years ago there was a nursing staffing agency that served as the go-between for parents and Res hab candidates. Goodness knows how many resumes I wrote for wanna-be Res Hab girls in my heyday. But that company does not exist anymore (legal issues killed it - ha), and unless your medicaid services coordinator is willing to be the one to interview the girls and have them on standby, you're on your own. As lovely as my MSC and Res Hab Coordinator are, recruiting and finding girls is usually the mother's onus. I didn't know where to begin. I called up my good friend Frieda and asked her if I should advertise in the daily flyer. She told me that a good Res Hab girl is usually found through word of mouth. She's never advertised. She rather thinks of a good family with good girls and asks them. Her criteria for a counselor was different than mine. Her Res Hab girls work in her house so she has to be able to tolerate them and not feel that theyre getting in her way. I really didnt care that much; I needed someone who would take Dovi out of the house - period. So she gave me one lead. I called them; they sounded interested at first but then declined. So I was back to square one. I was getting nervous; it was getting really close to June 1, and the sign up process is a pretty lengthy one. The prospective counselor has to get a medical exam and PPD test, then travel to get fingerprinted, fill out paperwork... it can take a month to be all approved and set up. I needed someone immediately.
Marilyn, my always-devoted Res Hab Coordinator, called me one day with good news. She had a perfect candidate; a girl who already worked at the Clinic's Sunday Respite program, and was looking for a summer job, since the clinic is closed in the summer. Since she was already registered at the Clinic - all fingerprinted and vetted and everything - she could begin immediately on June First. It sounded very promising. Let's call her... Debbie.
Debbie came over to visit Dovi and get to know him. When a girl comes to meet a child for res hab, there is the moment when you just know if this is going to work out long term or not. I had that with a lot of the girls. With Debbie, somehow, I didn't feel that vibe. There just wasn't that instant connection and instant warmth, where I felt taken care of and just knew that Dovi was in good hands. I can't explain it. But Debbie was experienced in the field, and was a counselor at the time to another child, was already registered at the Clinic, and was available. (She had ironically worked with Zevi that winter - remember Zevi? The boy who was compared to Dovi a lot, whose mother told me about the support group. )What other choice did I have?
Debbie explained her schedule to me. At the time she was working with another child on Tuesdays and Thursdays, but "In July he'll be going to camp and I'll be so bored! So until July I will take him on Sundays, Mondays and Wednesdays and in the summer I'll take him every day!"
Sounded perfect! My most desperate time then was Sunday - I just couldn't do my shopping! And while I would have loved to have someone every day already, my chesed girls were still coming on Tuesday and Thursday, so it wasn't so bad.
On Sunday, May 28, Debbie came to take Dovi out for 2 hours. It was absolute heaven. I did all my shopping and errands unencumbered, in half the time it normally took. I ran into a friend from the support breakfast of two weeks prior and I had an amazing chat with her. I discovered the existence of a second Sunday respite program - not run by the Clinic - that was specifically geared for children with autism. I decided to call them to see if Dovi could be part of it. (it's a whole chapter in itself which I will get into some other time.)
My first inkling that all was not right was when Debbie came back from her first foray with Dovi. She saw what he was really about, I guess - and told me she felt that it would be too hard at the moment to take him three times a week. For now she would take him only on Wednesday in addition to Sunday. Starting the next week. The next week, she decided that more than once a week was too much for her before her other kid went to camp. She would do Sundays only until July; in July she would start taking him every day. I was disappointed, but I figured I could survive the month. My main concern was that she should pick him up after school to spare me the pickup run, so I could wait until July.
That Sunday was basically the last time I can say that I fully enjoyed the benefit of Debbie's services. Things quickly unraveled - badly. I can't say I was being inflexible; a job is a job and you have to keep to the timing stipulated by your employer. I would discover very quickly a pattern of unreliability and a tendency to blame me for being inflexible.
On Sunday, June 5, I waited for Debbie... and waited. We had spoken Saturday night and agreed that she would come at noon on Sunday. At 12:05 when she hadn't shown up yet, I called her. She was taking a shower. I was upset. I was all dressed up and ready to go out and do my errands, and now I had to sit and wait a minimum of 15 minutes for her to show up. I know - it sounds trivial and petty - so what if a girl shows up 20 minutes late to a res hab job - it's not the end of the world. But you have to understand - I was desperate. I had been waiting for MONTHS to get some help to be able to do my shopping in peace, and now I was made to wait and wait.
Debbie showed up 45 minutes late. I was upset; I lost out almost an hour due to her oversleeping. I realized right then and there that I could not rely on her completely. She would never be able to handle working 6 days a week, and I had to find a 2nd girl. I even brought it up with her and she agreed. In her current Res Hab job, she worked every 2nd Sunday plus 2 days a week. She wanted a similar setup with another girl, so that she would only work every 2nd Sunday and 2 days a week instead of all 6 days a week. Sigh. So it was already beginning - it was too hard, before she had even really begun working.
At 2:30, Debbie had to be at her 'other job' - the child she had every other Sunday. So I had to rush-rush through my errands, having lost an hour, and then she asked me to please meet her halfway as the other child was arriving. I ended up walking across town, and she had left his favorite toy upstairs in her house. She had planned to take him to the waterfront - which he loves - but she said she was coming down with strep and therefore he had been in her house. It upset me. The weather was gorgeous, and Dovi has enough of being cooped up indoors all week. Strike 2.
Now in retrospect, I'm amazed how harsh and unforgiving I was on poor Debbie. Honestly - today I barely even ask the girls what they did or where they went. But then, at the beginning, when I was still learning to navigate the thorny relationship of mother to caregiver, every little silly thing upset me. Somehow, I felt I had been handed the short stick and didn't get the kind of counselor Dovi needed. She was neither reliable nor did she make good on her promises, and it irked me.
So why didn't I get rid of her, you may ask? Two reasons. Firstly, I had no one else. As bad of a counselor as she was, she was still a heaven-sent angel taking Dovi out of the house so I could do my errands. I also have a very hard time firing people. I sat at my therapist week after week complaining about Debbie's unreliability but just couldnt work up the courage to terminate her. So I doggedly continued putting up with our weekly spats.
The day the flyer appeared with my ad in it for a Res Hab girl was 2 days before Shvuos. I fielded dozens and dozens of phone calls. It was very tedious. I found myself explaining over and over to every caller exactly what Dovi was all about, what hours I needed, how much it paid an hour, what their job would be... I think I interviewed about 30 people. (In my later advertising campaigns I learned to be smarter; I set up a google voice number with detailed instructions and that cut down the messages and chatter in half). I ended up with 2 or 3 serious candidates. Most callers were 11th or 12th graders who were going to camp and were looking for a job after the summer. Some callers were mothers of candidates, and it was easier to talk to them. There were some young married, even some with babies - an immediate no, as they needed a LOT of energy to keep Dovi safe and happy, and they couldn't be distracted even for a moment. They also all wanted a lot of money - way more than the $11 an hour the agency was paying. Some of the applicants were shy and ineloquent and I couldn't see what they could really offer me that was better than the next candidate. I made a spreadsheet and whittled it down to the most qualified and mature sounding.
I'll refer to Res Hab Girl #2 as Teri. She was a sweet, shy girl who - again, did not connect very well to Dovi. She had no idea what she was supposed to do; she had never worked with a special needs child before. She was getting married in September and could use the extra income. I made up with her that she woudl work every 2nd Sunday, and on Tuesdays and Thursdays, while Debbie would do every other Sunday, and Mondays and Wednesdays. But here I committed blunder #2; when you hire a girl, you start her immediately! The payment situation can be worked out somehow until she is fully registered and fingerprinted. Instead I let it hang and hang. I made up with her that she would start working in july, once Dovi began to attend The ABA Center; she finished her day camp job at 3:30, and since Dovi would probably end at 4, she could walk over and pick him up and keep him for 2 hours, thus freeing me from the burden of picking up Dovi those 2 days a week. Debbie would do the same the other 2 days, and the problem of transportation in the afternoon would be solved!
But until that magical day of July 5, I would only have one girl - Debbie - on Sunday. We would survive somehow.
After I had settled on Teri, when the phone calls had trickled down to nothing, there was one more phone call. This girl - I'll call her Estelle - was extremely qualified. She knew everything about autism, had ironically also worked with Zevi (we seemed to attract the same type of girl all the time because of how similar they are), and funnily enough, knew Debbie too and wasn't suprised by the stories I was telling her. Estelle wasn't sure if she would be available as she was trying out for a new job a week later. I was hoping desperately that she would become available for me.
The next Sunday - June 11 - I made sure to have a long conversation with Debbie the night before about being responsible and all. She took it quite well. I really would have loved if she could take him out at 12, but she could only come at 1:30. Too bad; we'll survive. Where was she taking him? To the bargain shopping district just out of our neighborhood - she had to get new shoes - and she would make sure to stop at a park later. Turns out, she didnt take him to a park. He was in the stroller the whole time. Once again, I got upset. Dovi needed to run and spread his wings - not sit cooped up in a stroller the whole time. Debbie couldnt understand why I always had complaints. As long as he was taken off my hands and was happy, why was I making a fuss about things?
In retrospect - she was right. I was still learning. It was like leaving your baby with a babysitter for the first time. I was still trying to micro-control the babysitter. But I just wasn't getting the vibe that she was doing what Dovi needed. Dovi needed to be played with, taken to the park, interacted with. Not 'babysat'. Debbie even asked me for ideas what to do with him, but all I could think of was "occupy him."
That week I got the schedule for the end of the session for E.I. Ellen would still come to see Dovi in the last week of June - devoted, amazing girl that she is - but Bessie, of course, wouldn't, as most of her other students wouldn't come and "it didnt pay to shlep in from Boro Park for just 2 hours." Sigh. What to do with Dovi? I had a sudden brainstorm. Since Debbie's job at the Clinic only began at 2:00, would she be able to play with him in the morning for a little bit? But Debbie apologetically told me that during EEC/public school summer intersessions, the Clinic ran a program for the kids from 10 am to 3 pm, so she wasn't available. (The real question is - why couldn't she work with him after 3 pm? She was too lazy - or too tired - after a full day at the Clinic. Then again, don't many Res Hab girls work in the daytime? Whatever...) I began hoping that Teri would finish the sign-up process quickly so she could take him, otherwise I was at a loss how to occupy him on the two days Bessie wouldn't show.
The fourth Sunday of Debbie's tenure in our house, June 18, was the worst. She called me the night before to ask if she could take Dovi at 3 pm instead of at 1:00, because she had an 'emergency last minute job' - she was asked to substitute at the Clinic's Sunday program that day. I put my foot down and firmly told her - no! I needed Dovi out of the house at midday so I could run my errands stress-free. After 3 pm, Chaim was home and I couldn't go out anymore. She suddenly turned it around on me! She insisted that I was blowing things out of proportion; she had asked me for permission, and I was being so inflexible. I was left feeling horrible and taken advantage of. I hated that we weren't getting along. This was getting worse and worse by the week. I was getting the feeling that she was doing me a favor until the summer; she was really busy and was squeezing Dovi into her very tight schedule, because this was really meant to be a summer job, and she didn't have time for him until the summer started. I consoled myself with the fact that Teri would be signed up and available by the next week, and I resolved to give Teri the lion's share of the hours instead of Debbie.
A few days later was my sister's engagement party. I had asked Debbie if she could babysit and she graciously agreed. But on the day of the actual event she got cold feet and wasn't sure if she would have what do to in my house for 3 hours. So at the last minute I had to ask my sister-in-law to babysit. Again, this wasn't part of her contract - but it piled on to the list of unreliable episodes.
That same afternoon I found out that Teri's day camp job would be ending at 3:45. But Dovi's school day ended twice a week at 3:30 and twice a week at 4:00. She had a 15 minute walk and it was likely she wouldnt make it to the school on time to be picked up. Sadly, I had to tell Teri that the job wasn't hers. Finding someone to pick him up from school was the highest priority on my list, as Chaim's schoolbus comes at exactly the same time and I couldn't be there for both. I quickly called Estelle, but she still didnt know if she could take the job. [Sadly she couldn't. As you will read about in a much later post, she ended up becoming very involved with my family a few months later, and she has been helping us out a lot (although she is becoming burnt out lately and we will have to cut down on the amount of time she spends with Dovi).]
I began to panic as I realized I didn't seem to have anyone available to get Dovi from school. What would I do? Then I suddenly had a brainstorm. Who said that Dovi really needed to go straight to Res Hab after a long schoolday? The transition from 3 or 4 hours a day of therapy to a full 6 hour day would be huge, and he rather needed to come home and unwind a little before going out to the park again. I knew I would find volunteers for the first week or two until I had moved, and by then I would find some other girls to do it, or I could instruct Chaim to wait at a neighbor's house until I got home. Dovi's school was two blocks away from our new apartment, and it would take me 10 minutes to pick him up, if not less. I realized then that sometimes what I think is best for Dovi actually isn't, and I have to back up for a minute and rethink my priorities. I picked up the phone and told Teri to sign up. She would pick up Dovi whenever she was done with day camp.
My next difficulty with Debbie cropped up a few days later, when she mentioned that we had to find an indoor place for Dovi to play as it gets really hot in the park in the summer and it's difficult for her. I was at a loss. She had a hard time controlling him in her house, but it was too hot outside. What was I supposed to do?
Much, much later on, Marilyn my MSC realized that we did indeed have a problem, when winter came. We remedied that by allowing the Res Hab girls to use the Clinic's after school facilities once the special needs kids had left. But Debbie's hours were smack in the middle of Sunday when the clinic was in full swing. I realized then, however, that I was getting tired of Debbie's inability to figure out what to do with Dovi and to keep to her schedule, and I knew I would not mind replacing her with someone else. I wasn't going to fire her; something serious had to happen for me to go that route; but my patience with her was wearing thin.
The next Sunday, June 25, she was only able to take him for one hour. It was severely disappointing. It was bad enough that I didn't have any help whatsoever during the week - but I waited for that little bit of help on Sunday with bated breath. One hour wasnt even enough to finish a grocery order.
That day, actually, Debbie did a very good job with Dovi and I had no complaints. But later when we were discussing her summer schedule, I was extremely disappointed to find out two things. Firstly, the intersession program at the Clinic that she was working at was for two whole weeks. In other words, she wasn't available for Dovi until July 11!! I had hired her from June 1, and until July 11 she had worked a grand total of six times, two hours each. I was going to sweat through that first week of Dovi starting a full day of school still waiting for her to start her 'real', summer job. Secondly, I had assumed she was going to be so bored all summer because the Clinic did not run their after school program. Instead, she had a full time job; she was shadowing a girl with Downs' syndrome at a regular day camp. Part of her job was to walk that girl home - a good 20 minute walk. Which meant that she wouldn't even be back from her long walk to get Dovi before 4:45, when she would already be exhausted from a long day at school plus walking the other girl home. It made no sense!
(Now in retrospect I can't believe neither of us thought of the most logical solution: She worked in the school that's right above the ABA Center, so she should have picked up Dovi at 4 pm and walked the girl home while pushing his stroller! Why did neither of us think of it at that time? So weird.)
My house of cards began falling apart. Debbie herself admitted that she couldn't imagine how she would have the energy for high-voltage Dovi after an entire day at the day camp. It kind of seemed like her mother had been pushing her to get an after school job so her evenings wouldn't be long and empty. But it hardly seemed like Debbie would have the stamina to handle Dovi even two or three times a week.
The first week that Dovi was at the ABA Center, my devoted friend Carrie picked him up from my house at 9:15 and took him to the Center - he started at 9:30. And every single day at 3:30 she picked him up from the center and took him home (he ended up finishing every day at 3:30). Then, on Tuesday and Thursday Teri picked him up from Carrie's house after her day camp ended and kept him until 6:00. On Monday and Wednesday, devoted Carrie kept him all the way until 6. For the second week, we finally, FINALLy were going to start having Debbie on mondays and Wednesdays. Right?
On Monday July 11 I waited and waited for Debbie to call me and ask me for Carrie's address and what time she should pick him up from there. I knew I had to wait until she walked home from day camp with her protege, so I waited patiently. But at 4 pm she called. She wasn't feeling well. Could the Tuesday girl pick him up today and she would do tomorrow?
To say I was speechless was an understatement. This was it; the straw that broke the camel's back. We were moving in a week. I needed every ounce of help I could get. I had waited and put up with the shenanigans for six whole weeks, six weeks in which I was entitled to daily help, for nothing. There was a clear pattern here. She was not taking this job seriously at all. She didn't need this job.
Yes - she was allowed to not feel well. Occasionally, a girl really can't make it. But they are responsible enough to let me know - not to leave me high and dry at the last minute. Or they send in a substitute. This kind of shirking of duties was going on for way too long. I was not going to be stepped on any longer.
The next day, with a heavy heart, I picked up the phone and called her when I knew she wasn't home. I left her a detailed message telling her that unfortunately this relationship was simply not working out, and I was very sorry to do this but I would not require her help any longer and I wish her a happy summer. I felt a huge sense of relief, even though this meant that for the foreseeable future I would have no help with Dovi twice a week and every 2nd Sunday.
To my surprise, Debbie called me a little later telling me that she saw my number on her ID but there was no message. So I quietly repeated what I had said on the machine - but Debbie completely turned it around on me, saying that she had wanted to quit this job a long time before but hadn't wanted to leave me stuck without a Res Hab counselor. Ha! I quietly told her that she should have; we had wasted six whole weeks of funding and available hours when I could have hired someone else. We parted on lukewarm terms; ironically I ran into her a few days later at the Clinic and we were quite cordial to each other. She said hi to Dovi, and that was it. She admitted that the job had been way too much for her; logically, she really hadn't needed this extra job. You need a boatload of energy and patience for Dovi, and it's not meant for someone who has a tiresome job all day.
I learned many lessons during that terribly unsuccessful first attempt at finding the right counselor. I learned how to interview somoene the right way; I learned what my priorities need to be when interviewing the girl; and I have learned to trust my instincts. If a girl does not seem to click with Dovi, she will not last. I don't hire them if it's not a good match. They say experience is the best teacher; unfortunately the tuition comes at a high cost...
A few weeks later, I told Teri's mother that I felt her daughter should not continue the job once she got married; it would be too physically difficult and draining. Her mother was relieved, for she had thought the same. (Teri often took Dovi home and the entire house was upside down during that time.) Through a pure stroke of Divine Providence I was able to find a girl to replace Debbie for about three weeks; that girl had simply called me because she heard I was looking for someone, and I was able to get together the funding for her even though she had no time to sign up officially on such short notice. In August we went to the Catskills for 3 weeks (I will talk about that in about 3 or 4 posts from now), so when we came back.... the search for the perfect girl began again.
The Res Hab saga is ongoing. Girls quit. Girls leave. Girls don't fit. And the hunt starts again. An ad is placed. Calls come in. Girl are interviewed. Decisions are made. (I'll be doing it today once again!!!) It's all part and parcel of the job of a mother of a special needs child. It's not a salaried position. But the payoff is peace of mind and respite. And the ultimate reward shall be reaped in the Next World.
Anyone with hairy Res Hab stories? Feel free to share...
Here we get a whopping $2000 of respite funds for the whole year. We spend $1200 on daycamp so we have 800 left for the year or so. we pay a 60 something year old 10 bucks an hour. She's retired and bored and though she has ZERO energy, I don't have her take my kids anywhere---- my kids do best at home so she colors with them, plays chutes and ladders... playdoh, etc. I barely hire her at all while school is in session but for the two week winter break I used her for about 10 hours. Now I don't need her again for a while---- doesn't matter--- she's available for me, reliable, and loves my kids. She gets annoyed that Wilma poops herself constantly but oh well. Anyone who WILL wipe the butt of a 6 year old AND is reliable to show up on time is just peachy with me. :)ReplyDelete
WOW!!! An amazing long blog post. I like when u write a long post. The fact that you remember every detail is amazing... I'm in between rehab workers too forever... I'm forever busy looking for rehab workers...ReplyDelete