Home Health... Homegirl?

Story # 2 in the Home Health Aide Chronicles

On Tuesday, Ophelia informed me they were sending me someone temporarily for 2 days. A permanent homecare worker had been found, and she was going through the registration process and would start on Thursday. The temp was young and capable, said Ophelia - around my age. She was a former public school teacher. I braced myself warily - at least it wouldn't be the disaster that was Danuta and at least it would last only two days.

At 4:30 the bell rang. Who's there? A hesitant, quiet voice told me her name was Ms. Yvonne Murphy. In walked a perfectly coiffed, well dressed, tall, very shy woman. She was wearing a crisp white shirt, black slacks, and her hair was done up like she was heading for a party. She had biracial features but was light skinned (not that any of it matters; I'm just describing her). She looked, for some reason, extremely uncomfortable to be in my house. I groaned inwardly. She did not look dressed for a homecare job.

I asked her to sit down and described Dovi to her. She informed me that she was starting a live-in job the next week, and when she had gone today for her registration she was practically begged to do a 2-day job until my permanent worker could arrive. Therefore she wasn't dressed for the job, but tomorrow, she promised, she'd come in a more comfortable outfit so she could be more helpful. I showed her the documentary I made of Dovi and she sniffled. It was a little awkward; she was around my age, sitting around my pristine kitchen (Wendy had been there that day), waiting for Dovi to come home. So we made small talk.

Home Health... Hindrance or Aide?

Let's continue with some more upbeat posts, shall we?

As I promised you in the previous post,  the Home Health Aide saga has some rather amusing moments. So let's begin.

I had heard for a while about the possibility of getting a homecare worker due to Dovi's disability. I was wary, however; I didn't feel like having an aide underfoot every day. After the constant flow of EI therapists and then Res Hab counselors, it was a relief to have our home and privacy back. But I realized that we sorely needed that extra bit of help at the end of the day. Dovi came home from the counselor between 5:30 and 6:00 and tended to destroy the house until my husband came home from work at 6:45. I always felt bad for my husband that he couldn't sit down and eat a decent dinner because he wanted to see Dovi in bed first - it's hard to eat with him jumping around and climbing onto the countertops. It would be a dream to have someone be with Dovi for that hour, keep him occupied in the bath, and put him in pajamas, while my husband and I ate dinner. Then, the aide could do some light cleaning - Dovi's messes, of course, and maybe his laundry and a little grocery shopping... It would be amazing.

But I knew that it was too good to be true, in all likelihood; I have had plenty of elderly relatives who had aides and it's a major hit-or-miss. Many of them are lazy, some of the steal, and some are annoying. It's rare to have a perfect fit. The likelihood of finding someone who was both good with kids and enjoyed cleaning was slim. I made sure to specify to the caseworker at the agency what I was looking for. It took only 2 days and they found someone for me. Her name, they said, was Danuta.

The initial visiting nurse had asked me how many hours a day I needed help. Since Dovi usually came home at 5:30, I told her from 4 to 8 pm; the aide could clean up Dovi's messes from 4 - 5:30 and then take over and play with him until she would do his supper, bath, and bedtime, and then finish cleaning up after him. I waited anxiously at 4:00 to see this mysterious Danuta and hoped she wouldn't be too annoying.

At Long Last, the Breakthrough We Thought Would Never Come

After those 4 awful days when my ability to cope was tested to its limits, things quietly, subtly started changing. Perhaps it was my new attitude, thanks to the incredible talk by Rabbi Feiner. Perhaps it was HaShem finally having mercy on me and my family and starting to turn our wheel upwards. Whatever the case was, over the next few weeks, there were some surprisingly positive changes in my house.

My apartment passed inspection, and a huge burden was lifted from me. I had been living with a lot of stress for months anticipating the inspection, and thank G-d it passed easily.

The next week we went with Dovi to check out Otsar. I was extremely impressed with the school. Although the teacher of his classroom was not bilingual, I was sure i would be able to teach her some basic Yiddish words. They had a fantastic playground on premises, sensory therapy daily including an amazing sandbox, lots of toys to play with, custom made breakfast and lunches, and so forth. I was a little uneasy though; I knew Dovi would not make a lot of progress in this environment, as they only had 1 1/2 hours of ABA therapy a day and he did not need 'circle time' as he did not socialize with other kids at all. When I spoke to a parent at EEC I discovered that their curriculum was pretty similar (minus the ABA and sensory therapy) and I couldn't see Dovi managing to navigate an educational unit like they did at  Otsar. I was also worried about the long bus ride twice a day and the language barrier. I knew that the only reason to switch to Otsar was practical; he needed a normal center-based program where we didn't have a problem every time a therapist was absent. I informed them that we were in for the 2012-2013 school year, but I decided not to inform TABAC just yet.

The most difficult decision I've ever made, so far

There are, generally speaking, three types of special needs parents. The first type are the extreme optimists, the movers and shakers, the ones that leave no stone unturned and spare no expense to get as close to a cure as they can for their child, and to help their child achieve his or her potential to the max. They don't factor in the toll it takes on their family, their finances, or their own sanity; their disabled child is foremost in their lives and takes precedence over anything else. I'll call this type "A". At the total opposite end, you have "C", the ones who are extreme realists; they know that there is no real 'cure' for their child's disability and they don't want caring for their child to impact their family severely. These parents don't exert themselves too much for their child; they get as much help as they can, sending their child to every respite program, summer camp, send their child to the cheapest/free school program, even if their child will not make progress there. Their sole aim is to keep their child comfortable and happy while trying to continue their lives as smoothly as possible. They don't want the rest of their children to suffer too much, and/or they are not capable emotionally and financially of throwing themselves into the width and breadth of focusing on this one child at the expense of the family's general sanity. Then you have the "middle of the road" kind of parents; the ones who do extensive research into their child's disability and try many different things, but they are realistic about the impact it has on their family and on their financial and emotional resources and don't overextend themselves to the point where it affects their lives into exhaustion and depletion. I'll call this type "B".

I have come across many As, Bs, and Cs even before Dovi's diagnosis. I have found that most special needs families start out as Bs, and eventually the toll on their family is too much and they slide into Type C just to survive. I've also met a few As; the chidren of A families are the ones who go the farthest, but many type A families eventually crumble and must slip into B or even C mode - especially if their child does not end up making as much progress as they had hoped.

The 2 craziest weeks of my life, Part 2

Continued from the previous post:

As I saw Chaim playing in the hallway, I was disturbed to notice that his gait was extremely weird - his feet were wide apart and he looked uncomfortable. Before heading for the shoe store I took him to my mother to check what was going on. I did not like what I was seeing. There was considerable swelling in a pretty sensitive area, which was obviously making it difficult for him to walk. I called his pediatrician and asked if I could come over. Luckily, they were able to see him, and the pediatrician's office is about 2 blocks away from my mother's house. On the way to the doctor I checked the shoe store - closed. I wasn't happy, but it turned out to be for the best. The pediatrician checked Chaim and his eyes opened wide in horror. "You have to see a urologist immediately," he said.

Um. What? How could I see a urologist immediately? It was 2 p.m., I was laden down with shopping bags, starved, Dovi was due home in an hour, and there are no urologists in my neighborhood. The front desk staff set to work immediately burning the phone lines. They set me up with a urologist at Mt. Sinai Hospital, called the emergency room, and told me to go right away.

I felt cold and hot all over. This could not be happening. WHAT????

The two craziest weeks of my life, Part 1

I apologize for the long lapse in posting. I started writing this post weeks ago, but then events happened which were larger than life, overwhelming and all encompassing and putting things like blogging on the back burner. I was ready to put this blog to bed for good. But thanks to the sweet, encouraging support from you, my faithful readers, I pulled out the half finished post and completed it for your reading "pleasure".

***

I'm about to detail two weeks, the two hardest, zaniest, unbelievable weeks in my life. (Note: that is, until the past month, which were emotionally infinitely harder.)  It starts on January 16 2012 and ends on January 29, 2012. You know how you can be so incredibly, insanely busy, that you can't imagine just one more thing cropping up on your to-do list? And then something even bigger happens, obliterating everything you're so busy with, forcing you to pay all your attentions and energies to the crisis at hand? (I just experienced something similar; my school choice crisis went on the total wayside with the unfortunate family tragedy we had.)

We absolutely hate when that happens. But sometimes it's necessary, to help change our perspectives and focus and realize what's really important in life and what's just trivial.

WOW.

I'm overwhelmed by the amount of supportive comments to my previous entry. I want to thank you all. I didnt know how I have such a huge anonymous audience who are actually genuinely interested in hearing more of Dovi's story. And there is still so, so, so much to tell. So I've decided to still continue the blog. I'm not sure when - it might have to wait 'til after Pesach - but bli neder, I am not retiring the blog yet. Thanks so much for all the support.

Still in limbo

I'm debating the future of the blog .I have completely lost my initial excitement to write; it's becoming tedious, especially as the next few entries are emotionally wrenching. I'm not sure I'll continue; it's not bringing in revenue, and since we're probably backing out of the super expensive school - we simply cannot afford it - and donations are not coming in anyway - the blog is not as necessary anymore as I thought. I am leaving it up here since it is definitely helping many people who stumble across it. But for now, just stay patient as I figure out what I'm planning to do. I might write new entries, I might not. Check back once a week or so if youre not on the RSS feed, and let's see what happens. My writing muse might return; it might not. Who knows.

Extending the Hiatus

I must apologize for my extended hiatus. But unfortunately I must extend it further. Between the horrific recent accident which claimed the lives of my cousins, the ongoing drama-saga of Dovi's school for next year,  and Pesach cleaning - in which I am severely behind - I am barely coping with the day to day. My brain is not working right now and I can't write. I have already written the most powerful posts and this blog has accomplished quite a lot. I will still be posting more entries, but I have to ask for continued patience. It is much appreciated.

Toys I Recently Purchased

My 'bombshell' posts will have to wait. I'm in a unique kind of hell known mostly to special needs parents, but not totally; many neurotypical parents go through the same: School Choice Hell.

If you remember, I posted 3 months ago about an incredible school Dovi was accepted to, and I was so excited and started begging for donations. Well, it's crazy. My husband and I realized that we will simply not be able to make it financially and started looking into other options. Right now I'm in limbo - almost purgatory if you will (although there's no purgatory in Judaism) - trying to decide between 3 different options. Each option has major, major pros and cons. Meantime my husband went overseas for the Lizensk'er yahrtzeit and I'm trying to force myself not to focus on this subject which is boring me to death and driving me bananas. I'll have to sit down with pen and paper and write down all the pros and cons and try to get some clarity. AHHHHH!!!!!!!!!!!!!!!!!!

So let's talk about something more lighthearted: toys.

Just as this whole school debacle started, I asked Dovi's therapists for a copy of his most recent report so I could have it on file before my IEP/aging out meeting. I was startled to read that they wrote that he had little interest in playing with toys. WHAT??? At home he LOVES toys. I spoke to them and realized that they had a motley collection of outdated toys. Dovi needed new things. So I bought him a bunch of new things (reimbursable through my MSC) and will send them to school tomorrow. Each of these toys is a HIT - he loves each of them! I will post links and explanations to the five toys I got today.

Don't worry, I'll be back

I just want to assure you that I have not abandoned the blog. It has been extremely hectic around here with Purim and Pesach prep and lots of other things going on, plus my Internet connection has been very spotty for almost 2 weeks now. But don't worry, friends - I have several bombshell posts that are half-written and will most definitely IYH be posted within the next few days. Hang in there, folks.

Stage 5: ACCEPTANCE (a.k.a. The End of the Pity Party)

When I was a young girl - 18 years old or so, my first cousin had a baby boy. Mazel Tov! The trouble is, I had found out about a week before that she was expecting. The baby weighed under 2 pounds. He survived. He is now 18 years old. He is doing fine basically - except he has something called ROP, Retinopathy of Prematurity. In other words, this precious boy is blind.

His parents are the most incredible people I have ever met. They spared no effort and no dime to get the best care for their son, and to help him reach his full potential. He was partially mainstreamed and is now in a special ed yeshiva. I was invited to his bar mitzvah; it was a tearjerker. He is blessed with a melodious voice and a gift for music. He sang a moving song thanking his classmates and family for all their help. He delivered a bar mitzvah pshetl in Braille. It's an event I won't ever forget.

Utilizing his experience in the special ed field, my cousin's husband soon became the director of EEC, the local special ed school. At some point - I think at their second son's bar mitzvah - I told my cousin about Dovi. Ever the composed, dignified person who keeps her emotions in check, she didn't react visibly. But from then on she always had me in mind when there was an event she thought I would benefit from. She invited me to the annual EEC Shabbaton, and I was positively dying to go - but it clashed with the aufruf of my sister's chosson, so I had to skip it. But about a month before that Shabbaton, my cousin called me with a different offer. EEC held support events every few months for their parent body, and even though I wasn't really part of their parent body, she thought I would benefit from attending. As soon as she told me the name of the scheduled speaker, I jumped!

Stage 4: Depression (a.k.a. Longing to be Normal)

I have written about the Five Stages of Grief and how it relates to Special Needs Parenting. I've gone through Denial, Anger, Bargaining (Guilt), and now I'm on to Depression. But I was never really depressed about the loss of Dovi's skills, and the loss of the child he was. Not depressed. Upset, angry, devastated, sad. But I was never unable to continue functioning because of it. But truthfully, not every person who goes through a loss goes through real depression. I don't know if there is a better word to describe the emotion I want to use instead of depression. It was still a kind of Anger, I suppose, but it probably falls under the umbrella of depression. The reason I'm writing about this now, is because the next post after this will be about Acceptance. At the time of this narrative, January 2012, I had still not really accepted the situation. Accepted the reality of it  - yes. I was not in denial. I was doing everything I could to help Dovi, and to help our family survive. But I had not yet reached Acceptance - as in accepting that this is G-d's will and His plan for my family and my life. I was still resentful and fighting it.

The underlying issue, the reason for my resentment and inability to accept this was all Divinely Ordained was an old, festering wound; an issue I had been struggling with since I was a teenager; a coveted status that seemed out of reach. I was longing to belong. To be normal. To be like everyone else. In the cookie-cutter society where I live in, there is little room for individuality. If you're not exactly like everyone else, you stand out like a sore thumb. And "exactly like everyone else" means: Married by 20. Mother by 21. Mother to at least six kids by 40. All kids well rounded and 'normal'. And of course, being a whiz in the kitchen with a clean house, kids neatly dressed and pressed, and having no other aspirations beyond the kitchen. If you're 'differnet' than any of the above in any way, you're, well, you're a sore thumb.

Kitchen gates, Refrigerator Locks, and Sensory Bins

As you've been reading in the past few posts, last winter I took many steps to ease the burden of caring for Dovi. We had res hab counselors, monthly weekend respite, ambulette transportation to school, volunteers on Shabbos... things were definitely calmer. But there is one major remaining issue that makes life around Dovi extremely difficult - unbearable even, at times. This past Shabbos was so bad in this respect, that my husband and I had a rare argument on Saturday night.

Dovi's high sensory needs and my inability to set and enforce limits in the wake of his soulful eyes and begging hands wreak havoc on the house. He has a constant need to throw things, pulverize things, smear things... a combination proprioceptive/tactile need. It's endless, constant, and superfire rapid. 

This past Shabbos, in the span of 1 1/2 hours he destroyed 2 bags of confectioners' sugar, a package of pancake mix, a bag of rice, several rumballs, and ground nuts. It takes him sixty seconds to rip into it, spread it all over the kitchen and dining room, and then head back for more. When he was done with the  powdered stuff, he took to the solids: multicolored straws, baking paper, rubber gloves, plastic spoons. By the time my husband came home from shul, it looked like an earthquake had hit in a grocery store.

And the 3rd Angel was the Best of Them All

There is an old Yiddish expression, "דער אייבערשטער גרייט אן די רפואה פאר די מכה" - G-d prepares the remedy before He sends the malady. In April of 2010, just before Dovi was diagnosed with autism, one of the biggest special needs organizations in New York established a Respite House. I read the announcement and saw the ad and thought that this was a wonderful thing for special needs families who need respite from the burden of caring for their disabled children. Little did I dream that I would one day be among those grateful parents.

When I went to the first support event, one of the other autism moms mentioned the Respite House to me. I thought it was an incredible entity but did not think it was something I needed; Dovi was a handful, but I wasn't ready to send him away for weekends. But a scant few weeks later my baby sister got engaged, with the wedding slated for February. I knew I had to find somewhere for Dovi to stay for the Shabbos after the wedding, since we would be invited to eat all 3 Shabbos meals and he obviously couldn't come with us as he wouldn't behave. So after Succos was over and life settled down a bit, I began the process of applying for the Respite House.

I called the Respite House and left two messages but got no answer. In desperation I called the cell phone of the director, Cheryl. We had a nice, long conversation about Dovi. I even sent her the video documentary I had put together of his life from the day he was born up til his 3rd birthday - every word he had ever said, and the subsequent loss of skills. At first she was confused how I considered him autistic, until I realized she hadn't seen part 2! She sent me copious paperwork to fill out. As part of the application Dovi had to have a PPD shot, get his immunizations up to speed, and a well visit. That visit to the pediatrician was a nightmare. Drawing blood for Dovi involved 3 people holding him down. I also asked for a PANDAS blood test, which took the manpower of 3 people to get done. Dovi ran out to the waiting room screaming and bleeding. It was an absolute nightmare. The doctor also had to fill out a whole list of OTC medicines that he was permitting Dovi to be given. In short order I sent in the paperwork, and put it out of my head.

And the Second Angel was Disguised As A Teenager

Continued from the previous post....

The second angel that breezed into my life is someone we're already acquainted with - Estelle, who had inquired about the first Res Hab position but ultimately couldn't take it. I didn't hear from her since then - until she suddenly called me six months later. She heard so much about Dovi and was dying to work with him. However, she worked all day -til 5:30 - and wished she could figure out how to make it work.

I was curious how she heard about Dovi recently. To my surprise, she told me she had heard regards from him through Heidi. The two of them worked on Sundays at the Sunday Respite Program, and Heidi had been raving how cute he was. Thus I reestablished communication with Estelle. She was amazing to talk to. We talked a lot about various therapies, coping with special needs kids, and more. Her family constantly hosted difficult autistic kids and she was very experienced. It was fascinating to talk to her.

At the first support group event, I discovered many resources I had not known about before. The other mothers there told me about the Respite House, run by one of the amazing special needs organizations, where kids can stay overnight and over the weekends. It didn't remotely occur to me to send Dovi there; he was, after all, just a baby. I filed the information in the back of my mind and I hoped I wouldn't need it. The other juicy tidbit I noshed was that there was also a Sunday Respite Program specifically for autistic kids. I had tried to get Dovi into the Clinic's Sunday Respite Program, but it only starts at age 5. The Autism Sunday Respite Program apparently starts at age 3. At the time I did not yet have Res Hab and was losing my mind trying to figure out what to do with Dovi on Sundays. So I called the main office of the agency running the Sunday Program.

And Behold, Three Angels Came to Visit

Continuing from the previous post...

As my life was falling apart, I realized I had to take control and do something.

First I picked up the phone and called dear, sweet Sandi, who had so kindly provided me with volunteers to the basement the year before. She wracked her brains but could not come up with anyone available during those critical morning-bus and afternoon-bus times. Then she asked me whether I had considered calling J&N Ambulette Service. She had told me about it the year before, but I was hesitant. J&N is a local ambulette service. They transport patients with straight Medicaid and Medicare to doctor's appointments, and they also managed to figure out a (legal) way to transport kids to therapy and special ed programs. (Since Medicaid does pay for some OT, ST, and PT, they are allowed to transport patients to such services, even if Medicaid is not actually paying for the service.) I had hesitated, because I felt very stupid - Dovi's school is located 2 blocks away from home! I wasn't going to 'use' a service when it wasn't really necessary.

But after six months of rushing back and forth with Dovi twice a day, I had to concede that it was very necessary. The service was available, Dovi was entitled to it - why not give it a try?

Hesitantly, I called J&N and explained the situation. I spoke to an extremely wonderful guy there, who took all the particulars and promised to get back to me after he looked into whether he could service Dovi at those times.

Special Needs Children Affect The Entire Family

I've been a blogger since I remember. I started keeping a diary at age 12 and basically never stopped. I had to delete some of my blogs between 2000 and 2005 due to stalking and other issues, and sadly miss those entries. I also lost a typed diary from 1997 to 1999 due to a floppy disk malfunction. other than that, my life is pretty much documented on livejournal and facebook. Sometimes, my candor has led me into trouble; other times, I got tremendous resources, support, and responses to my questions and issues. But the biggest value of blogging for me has been looking back at the archives. I am constantly rendered speechless by how difficult my life was. I am constantly grateful for the good in my life, for the help and respite resources in place to lift the burden somewhat - but of course, getting all these resources in place took a lot of research, hard work and takes constant maintenance.

In any event, looking back at winter of 2011/2012, things continued spiral downward. As the school year progressed, I found myself being squeezed and crushed beyond capacity, with the demands of the different therapists, combined with Dovi's relentless stimming, hyperactivity, escapes from his bed, and pressure from Chaim and my husband as the family struggled to cope with their lives revolving around Dovi's needs, limitations, and destructiveness.

Autism and Ipads, Assistive Technology, Augmentative Communication, and all that jazz

Just recently I wrote a post about the silliest impulse purchase in recent history. You'd think I'd learned my lesson - but no.  A scant two months later I was once again filled with excitement over the next major breakthrough that would surely turn Dovi's life around.

Shortly after the late Steve Jobs passed away, I was flooded with emails and PMs telling me that I just had to watch this clip. I watched... and bawled. I cried til my head hurt. For I saw Dovi in every one of those 7 and 10 year olds. The tantrums, the inability to express themselves, the frustration... My heart broke. Even my husband, who is not touched by these things, was clearing his throat as he watched behind me. To this day I can't watch this clip without crying intensely. It's 13 minutes long. I'll be surprised if you won't find yourself crying at some point.

Wintertime and the Livin' Ain't Easy Either

Every year for the past few years since Dovi's diagnosis, when Succos ends and the long winter sets in, I started getting anxious. Anxious for the winter to pass with the minimum of drama and heartache. For some reason, the winter months are full of drama and stress. If I think about it, so are the summer months. And the spring months. And the fall months. Bottom line, life with Dovi is stressful. Life as a special needs parent is stressful. One's entire life revolves around that one child. Whether it's the schooling, the respite, the medical needs, or just getting through the day / evening / weekend with the special needs child, while not neglecting the rest of the family - and oneself - is a juggling act that puts Ringling Brothers to shame. But unfortunately, most of the balls do get dropped. And inevitably some of the crash. And break.

Boruch HaShem, at this point in time, my family gets so much help that there is almost no help left to even offer us. I will, over the next few posts, talk about all the different kinds of help we are getting which makes life with a hyperactive, destructive, (DELICIOUS) autistic child livable.

But at the point we're at in the story - early winter of 2011 - I had very little help. Yes, we had Res Hab and we were extremely grateful. But that was basically all we had. We were on our own for Shabbos - Dovi wasn't yet registered for the Weekend Respite program*. Nor did we yet have our Shabbos volunteers*. On Sunday, he didn't attend the Sunday Respite program* yet. In the evenings after the Res Hab dropped him off, I had no help* for the rest of the evening; it was my husband and my job to keep him and the house together. The hardest of all though was the lack of transportation to and from therapy*.

* These are all amazing programs we are fortunate to be recipients of, all of which I will talk about in upcoming posts.