"Good help is so hard to find" is the truest sentence I've ever heard.
I spent 5 1/2 years of my life networking, recruiting, interviewing, training, and losing dozens and dozens of people who help with Dovi.
There were com hab girls, respite families, volunteers, behavior trainers, camp counselors, and then of course, the Home Health Aides.
I briefly wrote about the process to get Dovi qualified for a homecare worker, and the first 2 aides who walked in and out of my life, Danuta and Yvonne. (I still wonder to this day what became of her and from time to time I look up her daughters on Facebook hoping to catch a glimpse of her whereabouts.)
After that, the agency sent Leticia, who at first seemed to be a lifesaver but soon turned into a nightmare.
I also learned that there's no such thing as a perfect homecare worker. You have to overlook a lot of things, but you also can't let yourself be stepped on. I was so afraid to let her go, and was terrified of change and of going through rosters of new people before we find someone good. It would take another long-term aide and another agency for me to finally find an excellent agency who always had a roster of great aides available and provided fantastic service. I just did not get good service from this first agency, and if a problem crept up with Leticia, I didn't feel like I had anyone to talk to.
But I'm getting very ahead of myself. Let's draw back the curtain and delve into this.
When Leticia first started, she was a breath of fresh air. She took wonderful care of Dovi, cleaned up after him, and kept to herself. After the disaster that was Danuta, Leticia was exactly what we needed. But after two weeks or so, she started getting a bit lazy. She would walk through the door, sit down with her phone, and needed to be cajoled to do anything. At that point Dovi was at a com-hab worker every day until 6 pm, and although Leticia's job officially began at 5, I asked her to come at 5:30 because it felt a little bizarre for met to watch her sit around and do nothing until Dovi came home. Occasionally she swept up a bit here and there, and maybe straightened up his room, but she wasn't the type of person to look around for extra work. I knew the rules clearly: her job was only to clean up after Dovi and help me with him. Unlike many other people, who use the HHA as cleaning help and personal assistant, I never asked her to do any extra work, ever. But she rarely showed up at 5:30; it was usually more like 5:55, and there were a handful of times that Dovi arrived home before she came. She had a long train ride, and had to drop off her children with her grandmother first, so she sometimes ended up running late.
Then Dovi would come home around 6:00, and Leticia would feed him supper and put him in the bath. Between supper and bathtime, she usually put on a video for him and sat quietly next to him while surfing her phone. She didn't interact much with him. It was a bit upsetting.
My husband usually came home from work shortly before 7:00, and he would take over from there; he would put Dovi in pajamas, give him his meds and put him into bed. Then Leticia would grab a broom and tidy up quickly, and by 7:05 she was out the door. She was taking a nursing course and had to be in night school at 7:30, so she could never hang around a minute longer. She never wanted to work any extra hours, ever - not that I even tried to ask her, because she was a single mother of 2 small children and wasn't available for extra hours. She never clocked in or out, never asked me to sign time sheets, and never explained why. (I think she signed them herself...) So basically, although her job was from 5-8, she was there for exactly one hour, and did almost nothing.
But it was another human being in the house helping me, and it was a relief.
After 3 months with Leticia we went up to the country for the summer, and I briefly considered whether I should let her go and get someone else - I knew we could do so much better. But after hearing so many horror stories from other mothers of having aides who never showed up, were downright abusive, or did nothing, I knew I couldn't really afford to be choosy. I also have a very, very hard time firing staff; I hate confrontation and find it hard to speak up and make my needs known, and I very often end up being strung along until things reach explosion levels.
When we came home after the summer, Dovi was delighted to her and ran to her for a hug. It seemed we were back on solid footing and Leticia would be our family's lifesaver.
But very soon, it started to deteriorate rapidly.
For starters, Leticia and I have very different personalities and we would rub each other the wrong way. I have a difficult time taking criticism, and I didn't like when she tried to tell me how to parent. She also had a way of talking that made every single thing she said, sound accusatory and argumentative. Then she would get sulky and defensive, and turn things around to make me sound bad. It was very difficult to deal with. She was very rigid about her hours and was very reluctant to make changes, which is a huge problem with a child like Dovi who has an erratic school schedule, coupled with the Jewish calendar. All of the later aides were way more flexible and tried their utmost to accommodate me, but Leticia wouldn't budge.
For example, on Labor Day I asked her to come a bit earlier since Dovi had no school all day and it would be tough to wait until she waltzed in at 6 p.m. I asked her if she could try to be prompt and be there by 5. At 5:00 she hadn't shown yet and I texted her to find out if she was on her way. No, she had just dropped off her kids and was getting on the train now. I was extremely disappointed and let her know that I was frustrated, because I had been counting on her, especially on a long day with no school. She retorted that it was a holiday, and she really shouldn't be working at all, and I would never work on my holidays! Um, the two don't compare; Labor Day is not a religious holiday -- I could not work on Jewish holidays due to religious restrictions -- and if she'd wanted to the day off, I could've asked for a replacement! Her need to always be right, and never concede she was wrong, drove me crazy. Of course *I* ended up apologizing to her....
Yom Kippur was the first time I really felt how great it was to have an aide. I asked her to come in the morning instead of evening, and she came indeed - for two whole hours. She turned on Dovi's DVD, and I was able to daven a bit. Then she left, and I was left to entertain Dovi for another 6 hours while I was fasting.
(In later years when I merited to have some really incredible aides who went above and beyond their duties and spent 10 hours with us on Shabbos and holidays I couldn't think back how I had managed all those Shabbosos and holidays, such as Yom Kippur, without any help or just 2 hours of help. Having access to his favorite DVDs all day was really the only way I could survive.)
Things started turning pretty bad between us once I was pregnant. I had no energy and did very little around the house. I had not yet told Leticia about it, and Dovi had started becoming a lot messier, and instead of stepping up and helping me manage the messes, she instead kept lecturing me about how I was letting Dovi get away with everything and that I was expecting her to do my job. I had no patience for any of this. Her job was not to teach me how to parent Dovi; her job was to help me with him. It was not her place, and it was getting under my skin.
After Hurricane Sandy, when I was in the middle of running back and forth to the doctor for my infertility treatment, the ABA Center and I decided it was time to start toilet training Dovi. Naturally, I had to do some crazy things like give him a ton of snacks in the bathroom to keep him seated on the toilet. He ended up making a big mess and Leticia blew her top. Instead of assisting me in the project of toilet training, she berated me for letting him make a mess and refusing to clean it up. It was disturbing.
As Dovi started making bigger and bigger messes, and I had less and less energy due to the first trimester of pregnancy, Leticia would often walk through the house at 5:55 pm, look at the mess in horror, and ask me how I was planning to manage with another baby. I retorted, "Maybe I'll actually get an aide who doesn't mind cleaning up!" (Ironically, it would take 3 years and 3 aides post Leticia finally find someone who kept up with Dovi's breakneck speed and cleaned up before and after him, only four months before he left home....)
When I had the unfortunate CPS case, I was really scared that Leticia would tell the caseworker some half-truths about my ability manage Dovi. Thankfully, she kept quiet, relieved that no one was pointing any fingers at her, either. However, I always felt a little anxious in Leticia's presence, and a large part of my reluctance to let her go, even when I felt her presence was becoming toxic, was an unfounded fear of her making accusations against me and causing me trouble. But the actual truth is that Leticia is a very nice and well-meaning person, whose personality and attitude just didn't jive with mine. In a perfect world, I would've called up the agency as soon as I had a handful of annoying incidents and asked for a new aide. But I had no relationship with Ophelia, and I didn't feel that Leticia's behavior warranted being removed from the case. She hadn't done anything egregious; we just didn't get along.
Shortly before Pesach Dovi came down with fever, which immediately made me feel a little panicked. I was still recovering from my brush with the CPS and was very anxious to see Dovi feel better. He was sick on Wednesday and Thursday; on Friday Leticia had a long in-service that lasted all day and she called to ask if she could cancel. I was adamant that she come, even for an hour, just to give us a bit of a break. She was very miffed about it, and when she showed up, she refused to bathe Dovi, saying she will not put a child with fever in the bath. Ironically I was pretty sure Dovi had caught his cold from her, but I wouldn't tell her that. She left in a huff after half an hour, and I had a bad feeling. Monday was Erev Pesach, so I asked Leticia to come at midday instead of her usual evening time. She replied that it was no use coming if Dovi was still sick - which he was - because, according to her, she'd have to report to her supervisor that the patient was already on his sixth day of fever. If she didn't come, well, then she didn't have to report anything...
The word "report" triggered a strong wave of anxiety inside of me and I gave her the day off. I felt she was manipulating me, knowing how afraid I was of the mix of agencies, Dovi's health, my own confidence in my parenting abilities, etc. We somehow muddled through that Erev Pesach day. She did come during Pesach, but I was already starting to feel a strong wave of resentment towards Leticia. It was a potent mix of pregnancy hormones, a personality clash, and the feeling that our needs were really not being met and her heart was really not in this job at all.
On Fridays Dovi only had school from 9 to 11:45. His therapist had to run and catch her bus to Monsey, so we asked Leticia to come from 11:45 - 1:45, pick up Dovi, bring him home, and stay with us until my husband came home from work. Half the time she was still on the city bus or train when Dovi's therapist called me desperately that she needed to run and catch her bus. I would end up dashing out of the house and rushing to pick him up. Sometimes she came so late on Friday that my husband was already on his way home from work and it was a complete waste that she had even gotten on the train to be at my house for less than an hour. I know that commutes can be vexing and things can be out of a person's control, but it was happening too frequently. Yet, I had no one to complain to.
The Friday before Memorial Day weekend, she informed us that she wouldn't be able to come on Monday or Tuesday, because she had to redo her physical exam and there would be no doctor available until Tuesday. I am pretty sure this is not true; there are certainly doctors who have office hours on Sundays or legal holidays, but putting that aside, why did she have to wait until that particular weekend to do her physical? She probably wanted to have a break from work... In later years, we would have never stood for it -- I would've requested a replacement, or even paid for her out of my own pocket just so that she could come. But when it came to Leticia, we never pressured her into anything - she was too strong-minded. So my husband and I worked really hard those 2 days, and admitted to ourselves that for all her faults, having an aide at bedtime was crucial to our ability to handle Dovi.
One of my biggest weaknesses when it came to raising Dovi, was letting him get away with almost anything. It is a personality flaw I readily admit to when it comes to parenting and self control, and it's a lifetime of work for me to break through. When Dovi came home from com hab, he would head immediately for the freezer, and I would let him have popsicles and ice cream. Leticia was very upset about that, and she claimed - rightfully so - that it impeded his ability to eat nutritious food afterwards. She asked me why I didn't give him soup... or fruit... I retorted that he didn't like soup, or most fruits, and he likes ice cream so I let him have it. Part of the problem was that she would sit mostly glued to her phone, often with earbuds in her ears, and Dovi knew to come to me for snacks and goodies, because I readily dispensed them. And then she would get upset, saying she can't bathe him / manage him if he's hyped up on sugar. Even if her claims had merit, it was hard to take her seriously when she was not paying him much attention but sat around with earphones jammed in her ears and her eyes glued to the phone while she let him run around helter skelter, and only woke up from her stupor when it was time to give Dovi his dinner and his bath. It seemed that she wanted to be in charge and had a hard time taking directives from me.
About a month before Dovi left for camp, I was informed that Dovi's Sunday program, which had been my lifesaver for 1 1/2 years, would not take him back the coming year. (I will discuss this in detail in the next post.) I got the phone call on a very difficult day, when I was in the middle of dealing with other crises. When Leticia showed up, I was in a bad state and very frazzled. I told her what was happening, and to my surprise, she had no sympathy to spare.
"You want us to do your job. You're the mom! We're not here to do your job! Where I live, no one has this kind of help!" and she went on and on how I was relying so much on other people to take care of Dovi, and I would just have to buck up and take care of him, and that's it.
I was really stunned.
It was really not her place to give me that kind of lecture. She had absolutely no idea what it was like to raise a child like Dovi. Even though she was in my house every day, she still had no idea. She was criticizing my every move, lecturing me on how to discipline him, and now, she was rolling her eyes at the way I was freaking out over losing a very important respite program.
"What are you gonna do when he gets older and stronger? He's only gonna get bigger! And what are you gonna do when you have the new baby?" and on and on and on. I bit my lip and did not tell her the truth: that Dovi would likely not be living at home anymore when he was older, bigger, and stronger. I could only imagine the long string of exclamations she would make once she heard that.
Once when Chaim, who was 7 1/2 years old at the time, was being extra special fresh and difficult, I noticed her trying hard to contain her opinions over how I was dealing with him. When he left the room, I commented in jest that she would probably give her own son a round spanking over that kind of behavior. She laughed at the truth of the joke. I had overheard her disciplining her son over the phone and felt sorry for him. Obviously, she and I had very different ideas of how to raise children.
Dovi had started really increasing the mess in the house; he had taken to shredding paper, spilling snacks and pulverizing them, and smearing ice cream around. It was hard for me to bend down and I was so tired all the time that I stopped cleaning up and waited for my cleaning help or my husband to do it. Whenever Leticia walked through the door and commented on how messy it was and I gently asked her why she didn't want to clean it up, her response was, "Well, I don't know which part of the mess is Dovi's and which was made by your older son, and besides, I only have to clean up what he does while I'm here, not what he does before I come."
The straw that broke the camel's back came on May 29, about six weeks before Dovi went to camp.
By then I was starting to strongly consider not taking her back after the summer. With a new baby coming, I needed way more than the one hour a day she reluctantly came to my house. At some point a few weeks earlier, she'd mentioned that she was considering taking a different job for the coming year, with more hours. I was pretty incredulous and asked her why she wanted to work more hours when she barely wanted to do one hour in my house? I think her response was that she wanted to do a morning job the next year; it worked better with her kids' school schedule. Inside, I rejoiced. I was afraid of 'firing' her, but I knew I would be delighted if she left of her own accord.
I was, at that point, almost 8 months pregnant, clumsy and exhausted. Wednesdays were the hardest; I hit the ground running at 11 a.m., going for my therapy appointment, grocery shopping, errands, and arriving home exhausted. I sat around for most of the day like a beached whale. I had low iron and very little energy. On that particular day I was busy filling out endless reams of paperwork for camp, and I had to go to the social security office the next day for an annual review, so I was frantically running around trying to find all the missing paperwork. That morning Dovi had gotten up at the crack of dawn. In an attempt to keep him from rattling around in his bed trying to find a way to get out, my husband put a few slices of bread and a few carob rice cakes into Dovi's bed so he would keep occupied. The bed was full of the leftovers of that morning's feast; I hadn't yet cleaned it up. By the time Dovi came home from com hab, I was sitting on the couch trying to catch my breath. The grocery order sat in boxes, waiting to be unpacked.
And then the crud hit the fan.
Dovi loves water - anything liquid really. Flooded sinks and bathtubs were frequent occurrences; spilled bottles were the norm. Dovi had gotten so strong he could open closed bottles. While Leticia was running Dovi's bath, he took out a bottle of ginger ale soda from the grocery order, pried it open, spilled it on the floor, and began swimming in it and lapping it up like a dog.
Leticia walked into the living room where I was spread out on the couch, her picture a face of deceptive innocence.
"Can I ask you something?" she asked.
"Sure," I replied.
Wait for it...
"What do you do all day?"
I was stupefied.
"What do you mean what I do all day? I run errands, go to appointments, cook dinner..." It sounded lame, and I felt flushed. What was she insinuating?
"Why couldn't you unpack the groceries before I came? I really can't work like this."
She was right. I probably should have put away the bottles of soda and other things that Dovi could potentially mess up. But she was blowing this out of propotion.
"Leticia, you're aware that I'm 8 months pregnant, right? I don't have a lot of energy."
She sneered in contempt. "I"ve been pregnant twice myself. You're not disabled. You should be able to do some housework! Did you see what Dovi's bed looks like? I am not cleaning that up!"
I leaped off the couch clumsily, my blood boiling. I couldn't believe what I was hearing.
"Leticia, you were seventeen years old when you were pregnant! You were not thirty-seven years old, and you were not dealing with a hyperactive autistic child then!" I was shaking. "You should know, I've really had it with your attitude and I won't stand for this anymore. You're constantly telling me how I should do things. I'm not interested in having someone here to restructure how I do things and tell me how to run my life!" I was really angry.
"I'm here to help you and you're not interestd in my help! You tell me that I have attitude? You're giving me attitude! I will not be disrespected! I'm going to report this to my supervisor! I cannot work like this!"
The minute she said the word report, she triggered a hyper-anxious reaction in me. I ran to my room and curled up in a fetal position, crying hysterically. I felt so stuck. Now I certainly couldn't fire Leticia -- now she was bound to sit down with her supervisor and twist everything around to make me look bad, and I would have no recourse, as I had never had a conversation with Ophelia about how I wasn't getting along with Leticia. And irrationally I was also afraid of how I would manage if she indeed left us suddenly. As terrible as her attitude towards me was, being left without an aide even for one evening was disastrous. I could not longer physically handle Dovi at all in this stage of pregnancy.
When my husband arrived home he was shocked at what he found. Leticia went on a tirade at how I had disrespected her and given her attitude and so on. How ironic is that? I was disrespecting her?
May I add that Leticia was all of 29 years old? Ever heard of respecting your elders and getting along with your boss?
This relationship had gotten toxic. And I didn't know what to do. And I was also scared of her.
Of course, before Leticia left I apologized to her and asked her meekly if she was coming tomorrow. She murmured that she had to speak to Ophelia about this, but she probably would still come. After she left I was still shaking.
I called my friend Tova, who also had an aide from the same agency. She was horrified by my story and told me that I did not have to stand for this kind of emotionally abusive treatment. But, I asked, how could I have Leticia replaced when I had no relationship with Ophelia?
Tova told me of a wonderful Jewish man named Solomon who worked at the agency and had been instrumental in getting her a fantastic aide after a few really bad matches. She told me to call him; he would hear me out and really try to accommodate me.
I also called my sister for advice, but she had a busy night and told me to call her in the morning.
The next morning while I was sitting at the Social Security office for hours (I was eventually sent home and told to come back at a different date...) I had time for a lengthy conversation with my sister. My sister is bli ayin hora a wonderful person who is very centered and smart and always seems to hit the perfect response whenever I reach out to her. This time, to my shock, she kind of took Leticia's side.
She tried to paint a picture for me what it was like to work at my house. The chaos, the mess, my inability to cooperate to try to change things. I am who I am, yes, but if this is how I operate, and she cannot work in these conditions, this job was not for her.
Of course, my sister did not think that the way Leticia had spoken to me was acceptable or respectable - at all. But I had to think long and hard how any of my future helpers would last in my house if I kept letting Dovi have junk food and ice cream, which made him hyperactive and difficult to control.
It was a hard pill to swallow. Being strong and disciplining Dovi was my weakest spot and I just could not do it.
The bottom line, however, was that Leticia had to go.
But not yet. There were five weeks to go until camp, and there was no point now in stirring the pot, creating more conflict, and then trying out a dozen different aides who would not know how to handle Dovi, only to get someone new for September. My sister advised me to ride it out until Dovi left for camp, and be cordial and stay out of Leticia's way for the duration, and deal with getting a replacement over the summer.
I composed a text to Leticia. I apologized for blowing my top the night before, and admitted that I have a weakness when it comes to imposing limits. Therefore, I think the best way for us to be able to work together, is for me to leave the room when Dovi comes home, and let her take over. She should feed him and play with him and I won't be present, since I know I won't be able to refrain from indulging him with junk food. She accepted my apology, never reported the incident to the agency, and we kept out of each other's hair for the rest of her time with us. I let her be in charge, and hovered around the periphery without issuing too many directives. It was very challenging, because Dovi kept coming to me and dragging me to the freezer or the pantry in search for his favorite snacks. But somehow we pushed it through.
I learned some very difficult lessons during our experience with Leticia. I still had not learned how to be assertive and firm, and how to let go of workers who were not doing their job. It is a skill I have still not fully mastered. I stayed with subsequent aides who were not ideal and a cleaning lady who stole money from me, without having the courage to get rid of them.
But... as with all the events in my life, especially when it came to Dovi, events that seemed truly terrible turned out to be a blessing in disguise. This blow-up with Leticia had to happen so that there would be a final nail in the coffin. I didn't begin to dream just how much help I would need with Dovi after baby Levi's birth. The best thing in our life would walk through the door in September, and she would keep us sane for the next three years.
But if I thought I was done with drama and heartache in that short month until Dovi went to camp, I was sorely mistaken. My world would yet be shaken up in ways I could not begin to imagine, and it would set the path for the eventual climax of the journey with Dovi.
Thanks for posting two this week! I eagerly await each new episode!!ReplyDelete
Leticia had a point — you have no interest in parenting your kids, least of all the autistic one.ReplyDelete
A stay at home mom who can’t be bothered to unload groceries?
Watch one kid while the older one was at school?
Seriously... why did you have kids? Why do you think you’re entitled to STAFF paid for by the STATE?
Why keep having kids if you’re happy to ship them off to institutional care?!
One of the things this blog has taught me is how little I can judge anyone else's situation or challenges. I cannot fathom what the author's life was like, but reading this blog and other things she's written has at least given me enough to know I cannot judge the situation! I cannot fathom the constant adrenaline levels necessary to supervise such a child, and remember, after adrenaline comes a crushing fatigue. I know enough to know I cannot judge the author. I also know there is undoubtedly more to any story than you can glean from a blog.
Thank you miriam.Delete
My initial reaction to that comment - after the initial shock and anger and bruise to my self esteem - was to sarcastically retort, "You're right! Indeed, we have not had any more kids since then!"
However, the one thing that really surprised me was Carlee's statement that I was 'happy to ship them off to institutional care.' Show me ONE place in this entire blog where I am remotely 'happy' about having to place Dovi. Not only won't you find happy, you won't even find 'okay with it'. If anyone has spent five minutes reading the blog, they will see that the decision to place Dovi came after weeks and months and years of fighting against it tooth and nail, and with tears and therapy and a lot of outside pressure. No mother is 'happy' when their severely autistic child needs to be placed. Ultimately it was for Dovi's benefit, as his quality of life is way better in a setting where he has a staff of hundreds at his beck and call, where every behavior is documented and addressed, and where he can learn life skills he just can't learn at home. Yes, I'm happy - happy that he is thriving in his new place and not miserable there. I'm happy he's being cared for by wonderful people, who actually care about Dovi, unlike most of the aides who worked here over the years.
As for getting 'staff paid for by the state' - Dovi is clearly a very disabled individual, and disabled individuals are eligible to get homecare workers. This is not some new, earth shattering revelation. Com Hab workers, respite workers, homecare workers all exist for a reason and are funded for a reason.
The only person who can truly understand the extreme challenges of parenting a child with severe behavior issues is someone who is a parent of a severely autistic child herself. I don't expect anyone else to understand. But I do expect them to be respectful, and not making scathing, cutting comments on these entries, where I pour out my heart and soul, make myself vulnerable, and am brutally honest about my personal shortcomings.
Comments like these make me consider stopping to write. They are not fun.
Is your blog open to the public or can you block people like Carlee who is vicious and judgmental? Carlee, you are cruel.Delete
Blog is open to the public . and I have no idea who Carlee is, she posted anonymously and I dont have her IP address. it's ok. I dont take it personally. I was really shocked.Delete