Watching the Grass Grow

Akiva on the slopes. Killington, VT 2009

Akiva on the slopes. Killington, VT 2009

I can see myself in my mind’s eye. I’m laying on the lush lawn of my youth in Malverne, Long Island. It’s hot. I’m staring intently at the grass, examining each blade, watching for insects and whatever else of interest catches my eye. As a kid, I could do this for hours – ah, life in the 60’s and early 70’s before the computer – when one would stay outside playing as long as the weather was good, and until your mom called you in. I’d work on my headstand, my cartwheels, playing spud and kickball, and watching the grass grow.

When my eldest was born, I’d lay him on the bed next to me and admire him; his body, his little fingers and toes (even Natan, now 6”1’ or so, was small at some point) and his sweet, fuzzy head. I’d wait for him to move and shift, and when he was a bit older, I’d try to catch his eye and get him to turn in my direction and smile. I felt like I was recapturing those long ago days of my childhood, like I was watching him grow before my eyes. But of course, I couldn’t really watch him grow as everything he did, and my next one, Gabe, happened in lightning flashes – too fast for me to even notice, ensconced as I was in the daily work of nursing, changing diapers, and managing home and hearth. One minute they were mewling lumps and literally overnight they were smiling, sitting up, crawling, walking and…in the army.

I was just typing up a doctor’s letter for some paperwork we need to get together for Akiva. We’re applying for a visa for a foreign worker, something that is a great thing in this country. It’s most commonly used for at-home-elder-care as well as supporting kids or adults with chronic health issues or special needs who live at home. Think of it as making it possible for a person to live at home  – as they should. Studies show, by the way, that young adults with special needs thrive at home – with their parents and families, even if they’re out working and doing each day.

Ira and I have been moving towards this decision slowly – it’s not an easy one as you would imagine and we’ve had many moments of guilt about bringing in a stranger and of ceding 15.5 years of 24/7 responsibility to another person. Living here, we know of so many good stories and I’ve met many lovely foreign workers and I deeply admire their work ethic, along with what they give up in order to live and work in another country. If we get approved and can have a p/t person – unclear – it would ease the laundry load, the 6am-morning-grind, and offer us some evening help when we have meetings or other commitments. It would also make Shabbat more restful and shul-going easier.

As I was writing up the letter, I referred to one written before we moved to Israel by Akiva’s then geneticist, Dr. Bob Marion. Dr. Marion – a prince among men and if you ever need a specialist in genetic disorders – he’s at Montefiore in the Bronx – give him a call, watched over Akiva’s development from infancy until we left. We’d visit him every year or so in order to have an expert with whom we could talk about any number of issues. There’s a clinic with similar care at Hadassah’s Mount Scopus hospital that’s good but we’ve only gone once – it wasn’t the same without Bob Marion.

The funny thing? The information in the letter really hadn’t changed. Don’t get me wrong, Akiva has matured and grown, developed and learned new skills, in addition to a new language, but his everyday independent living skills still stink. The grass has grown, ever so slowly.

With Akiva, it’s always been about watching the grass grow, celebrating each hard-won moment of development, stuff I never thought about with the big boys.  When he sat up assisted at 17 months and on his own a few months later – you had to see how he figured it out – we sponsored a kiddush. When he stood and saw the world from a different vantage point – he was pleased with himself. When he walked at 6. When he first kissed – really puckered and kissed with his lips – he was 9. When he ran and jumped – it’s hilarious to watch – he was 11. When he started carrying his own backpack, and when we noticed that he really knows his neighborhood and could probably find his way home – not that I’d trust him to cross the street safely by himself.  And how about this one? When he finally pointed down into the toilet when peeing – a big one, as you can imagine.

I’m not telling you this stuff so you can feel badly. I’m telling you this stuff because it’s wild to slow the world down and get off. That’s what Akiva does daily – takes the world at his pace. As for the rest of us, it’s a page from a book that we should take the time to read.

Will it always be about guilt?

Akiva as Old Macdonald, what the locals call ‘Dod Moshe,’ Purim 2012.

Why are you so tired, asked the chiropractor the other day? I hesitated before answering. She’s after all, a single parent, with an energetic and adorable toddler. Surely she’s more tired than I am? Or, maybe she’s not.

I looked over at Ira the other morning and told him that I like him, really like him, but he and both laugh that we’re sort of like two ships passing in the night – we look at each other in a friendly fashion but barely have the energy for an in depth chat, let alone a night out together. When my middle son, Gabe, asked me innocently this morning – this as he packed up for a 2-week stint at his mechina program – for some help putting together his breakfast – I snapped at him because I felt tired and cranky, so not his fault. Why, you may ask?

Akiva’s been waking up earlier than ever. As it is, the alarm goes off at 6:15AM daily, so that we can get him through his morning routine before being packed off to school at around 7:05AM. If Akiva only slept until 6:15, I’d be happy I guess, but lately he tends to wake up at 5:30AM, sometimes even a tad earlier than that – bright eye and bushy tailed and very often, wet. Really wet. Shower and change the sheets and put in the laundry wet. Even if we get back into bed for a few minutes, we do so with Akiva between the two of us, happily nattering on about whatever’s on his mind. Not exactly restful, right?

Put him to bed earlier, you say. Doesn’t work. Put the blinds down tight and dark. Been there, done that. Even though he’s biologically almost 15, he remains an early riser and given that he’s often asleep by 9PM, he’s getting a nice amount of rest. He is. Not us.

When I called the National Insurance Institute a few years ago to inquire about assistance with full-time help at home, they told me there’s no further help – other than our monthly stipend that we receive which absolutely helps with essentials such as diapers and babysitting – until the young person is 18 years old, except for children with more significant physical issues, I believe. That’s frustrating for a family coping with the demands of raising a developmentally delayed teenager – essentially a child in a young man’s body. I’m not the 35 year old I was when he was born  – can’t pick him up, can’t move him around as easily, can’t physically do what I used to do when he was smaller – and my two older boys are closer and closer to leaving the house. Where does that leave a couple facing an empty nest with an overgrown, albeit loveable, developmentally delayed 15 year old?

I’m not sure. I’ve asked parents whom I know, whose children went and lived out of the home in their teens, why they made the choices they did. In each situation, after much thought, it was the right thing to do – for the family, for the sibs, and interestingly enough, for the teen with special needs, who blossomed in certain ways when away from parents who love but often baby because that’s just the way it is. As parents, we don’t baby on purpose but we enable for sure – every day. I’ve spoken with parents who’ve found the wherewithal to hire live-in-help – all are delighted with the results and feel that the right person makes a huge change in the family’s life. That sounds good to us – Ira and me – but we worry about finding the money, the right person, where to put them and what it’s like to adjust to someone new in the home. We fully expect and want Akiva to live at home for the foreseeable future and feel it’s best for our family and for Akiva to have him live at home for the foreseeable future  – we’re just not sure about our survival. He’ll be fine.

But then I feel angry that I, who helped found and run 2 non-for-profits – Shutaf and Theater in the Rough – both dedicated to the good of the community, can’t get the help or understanding of what I need, what we need as a family. Service coordination, family support and yes, I guess more funding to help our family manage. But then I worry that the backlash will be the obvious one – families who have kids with special needs just expect it all to be handed to them on a platter. After all, a kid like Akiva has a diagnosable-in-utero and therefore, preventable disability – he’s just a drain on society, right?

Let’s move on from that conversation for the moment and get back to fatigue – emotional and physical. It’s the struggle, the ultimate marathon, the final frontier for us as a family and we’re attempting to maneuver through the land mines with grace and good humor, just as we did when our boys were infants and we were scraping by on scant hours of sleep a night. So if I seem a little distracted of late, give me the benefit of the doubt – we’re doing our best.