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Friday, February 16, 2007

Musings: Aliyah With Special Needs

It occured to me the other day, as I sat in the lobby at Hadassah Mount Scopus, that other parents live different lives. I've had this thought before, but it struck me again with more force because I found myself (again) waiting in a hospital for a specialist.

My son has mild CP. One thing he needs, besides a pediatrician and lots of love, is a neurologist. Now, neurologists come in all flavors: we've had the cold-blooded expert who is absolutely brilliant but can't communicate with the patient or parents; we've had the smart but highly overbooked expert who has no more than 10 minutes to give us every 6 months; we've had the warm, bright, caring neurologist who went the extra mile and we've had the idiot who told us to insitutionalize our kid because he'd never walk, talk, or go to school.

The best neurologist was the one we had most recently in California. But our aliyah made it impossible to keep her as our doctor, of course. However, the Boy's pediatrician came to the rescue here in Israel. We had already met the neurologist in our medical clinic. Didn't like him. Rushed, hurried, wanted to know why I was bothering him. When I later met with the pediatrician, I told her I needed a better neurologist. She said she could give me names of the best neurologists in Jerusalem but the top three aren't in my kupah. I don't care, I told her. She gave me three names. I looked at the list, and asked, "Which one would you take your kid to?"

Now I know the professional reference rules. I always knew as a lawyer that I could not recommend any particular lawyer to people, but needed to give them a list of at least three people they could call. The doctors have similar rules, hence the pediatrician's list of three names. To her credit, without batting an eye, she named one of the three as her choice if it were her kid.

We made the appointment to see the neurologist, who works at Hadassah Mt. Scopus. We actually got in to see him within four months, which is pretty extraordinary--the current wait is 6-9 months to see him.

I was pleased with myself that I was able to actually navigate the Information booth, the payment office and the directions in Hebrew. The neurologist I had to do in English--fortunately, he spoke Hebrew, English and French fluently. He reviewed the documents and reports I brought with me, asked for copies of the ones he found pertinent, reviewed the CD of the Boy's most recent MRI, and came up with a plan for further tests and follow-up. He was clearly interested in my son, and that's one of the best qualifications of a doctor IMHO--not rushed, not too busy, not disinterested, not bored or tired. This is a doctor who likes his work, and finds his patients interesting.

However, I had to pull the Boy out of one of his favorite classes to make this appointment and as we sat in the lobby I realized that despite the Hebrew, the setting was oddly familiar. Yet another hospital in my child's life, another doctor, another medical appointment and more tests and evaluations. Don't get me wrong -- I'm very grateful that the medical infrastructure of the modern world is as advanced as it is, and my child benefits from all this. But other children miss class for dentist appointments. Other children leave school and go to football practice. Other parents take the afternoon off to go to the track meet and root for their child. Other 16-year-olds can go over to Avi's place to go swimming without parental supervision because their parents haven't been told that their kid might have a seizure and drown. Other 16-year-olds can walk to school alone because their vision isn't so poor that they're likely to step in front of a speeding taxi without seeing it.

So even though the signs are in Hebrew, the conversation is in Hebrew, sitting in the Hadassah lobby had an oddly familiar feel to it. I wondered if the Boy ever felt like he was "missing" something in that he didn't go to football practice, or enter a swim meet or do the things that most adolescent boys take for granted.

How do you answer you son when he asks you, "Why did G-d make me this way?"

What comfort can I offer him when he realizes, as he did this year, that his condition was not something that he would "grow out of" as he told us he thought would happen if he just kept trying harder.

I know what it has meant to me. To me, it meant that I have a child who is one of the most generous and affectionate kids in the world. It means that I have a child who I value for himself and not because of the bragging rights of reflected glory so many parents seek ("MY son is a doctor" and "MY daughter just made partner at Pillsbury, Madison & Sutro"). I'll never go to a football practice, but then I wouldn't trade the football practice or track meet for what I have: I have a child who loves me unconditionally and acts in ways that show me his love every day.

Photo in front of high school last year by Ima--hence the frown. "Not another picture! I hate having my picture taken! And I'm late for class!"


Blogger Emah S said...

That was beautiful....tears definitely were brought forth! It's always important to remind ourselves of the beauty in every situation. hugs.

and ps. I miss the 5 NIS coffee and chatting too!

Friday, February 16, 2007 at 11:45:00 AM GMT+2  
Blogger aliyah06 said...

Thanks, hon -- hugs back atcha! Shabbat shalom and let's schedule coffee, okay?

Friday, February 16, 2007 at 3:27:00 PM GMT+2  
Blogger Ways of Zion said...

We spent the night there (at Hadassah) in the ER with our lil baby when she was sick for the final week of our trip.

hugs and prayers to you and your family

Friday, February 16, 2007 at 4:16:00 PM GMT+2  
Blogger Jill said...

aoOther children that lead ordinary lives don't have their faith (necessarily) tested at an early age. What makes him remarkable is through any challenges he has faced/faces he is creating an extraordinary life by his loving,accepting,& generous spirit! These are the qualities every parent wishes for their off spring. He is a gift!

Lastly, I was 'over-the-moon' to hear that the neurologist was patient, interested & helpful...what a treasure to have found a physician like this!!!

Friday, February 16, 2007 at 6:51:00 PM GMT+2  
Blogger Ellie's Mom said...

It is challenging to comment without mixing my hats. On one hand, as a physician, I identify with the docs, even the selfish, annoying, clueless ones since, you have no idea b/c you're not one of this kind of patient, how selfish, annoying and clueless patients and their families can be. The guard is almost always up in the US to protect yourself professionally from them, either malpractice or dealing with beyond the boundaries narishkeit.

But the other hat is the more real one. I gave birth to three severely handicapped kids who each lived about 8 years. I cared for them as a parent and as a physician by myself b/c I could not find any of my colleagues (the same people I had to work w/ every freakin' day) who had the knowledge, the flexibility, and/or the imagination to deal with a non-diagnosed condition. I spent 18 years (first one born 1980, last died 1998) waiting for someone to report me to the court for "abuse" b/c I refused to let my kids have trachs and g-tubes placed which would have only tortured them and would have not added anything of value to their lives which clearly were going to be limited in years.

But I then adopted three great kids in the US, right from the hospital, three miracles in a row. The oldest is to be married this summer. The next is in his yeshiva year in Jerusalem and will, hopefully, be attending YU in the fall unless he decides to stay in Israel.

But then there's the little one, an almost 11 year old, who is completely normal, yet isn't. No diagnosis...for a change. He has painful anxiety (for no apparent reason), has tics, and an almost impossibility for 8 years to form readable writing....all the while when his receptive vocabulary was 12 years when he was 6. Pediatricians: useless. Pediatric psychiatrists: not useless at all, but there's a limit to the use of medication when it doesn't work and the problem isn't so great that you need to continue it. Then, the big macher neurologist at the Cleveland Clinic who had us wait for close to an hour and then just lifted his hands in "this isn't big enough for me" and then charged the highest level of encounter which, if I wanted to, could have turned him in for fraud.

So, I, too, sit with a child whose future is unclear. will not be an academic, yet his love of learning is palpable. People will be "annoyed" to have to see his tics when they occur. And all this is part of our thinking in making aliyah. We were going to wait until he finished HS, depending on the "superiority" of the American educational system. But then we realized, and what would he do in the US if big-time college weren't in his future? And that's how we decided early aliyah would be good for him too. He'll do well w/ the language, but if he doesn't excel academically, he'll have the whole spectrum of long-term employment observant Jewish boys just don't have in the US.

Ah, and you touched on the biggest points: having to put up w/ the bragging rights other parents seem to have to have when talking about their children. Let's see, partner at a law firm but no time to see his wife and children. Ivy league, but doesn't call home. Four offices, but parent doesn't understand that means s/he can't make a living in one office. On and on. Here's the advantage: we have the sweeter deal. We can value what our kids give us. When do don't "expect" something, anything you get that is extra is all the more wonderful. Despite the hassles our children give us in navigating the every day (like yours not being allowed to swim alone, etc....I guarantee I can trump you on the viciousness of what I've experienced), they make every accomplishment all the more sweet. And we get to sit back and have a sincere appreciation for the greenness of the leaves, for finding a caring professional, for enjoying the moment....while parents of the super-achieving have to worry about letting any crack in the facade show.

I probably shouldn't post this. But it's 12:30 AM, I've just seen a remarkable documentary about Rav Solevetchik, and my alternately-learning future Israeli is still up watching silly shows on Disney....and I felt I had to share since your post touched the nerve so sweetly.

Sunday, February 18, 2007 at 7:41:00 AM GMT+2  
Blogger aliyah06 said...

mother of israel--then you KNOW the anxiety--thanks for the hugs and the prayers

ellie's mom--I love you for this. My email is msjwilliams@gmail.com--talk to me. Your comment has me in tears. Tears for the empathy and tears for those you've lost.

Monday, February 19, 2007 at 5:48:00 PM GMT+2  

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