Jeff and Amanda, Tikvah Voc-Ed
July 23, 2014
May 30, 2014
Ye Olde Condundrum
Now that Hart and Jeff are older (almost 21!), it has been a while since I have been in a group of special ed parents whose children are in elementary school. I am off on new adventures, such as shepherding SSI and Medicaid applications through the labyrinth of official government vetting.
Last weekend, Jeff and I attended a community camp-out through our synagogue. I love this event, although I haven’t attended in several years. One of the great things is that it attracts a cross-section of membership, from families with toddlers to teens, to a few older people without children. As ever, there are lots of adopted kids and an overlap of parents with children with special needs. I must be the grande dame of that demographic.
I found myself in a cluster of four mothers, two of us encouraging the other two to get wills and estate planning done. “You don’t want the state to determine what happens to your child, if some tragedy befell you!”
But I had the sinking feeling of deja vu when one parent said she had taken her daughter to the neurologist Jeff goes to, hadn’t liked what he had to say and left. I asked, “Who prescribes medication for your daughter?” I regretted this the minute I said it, because I saw the familiar squirm that I used to encounter so often. “Oh, we aren’t ready for that, yet.”
I have a lot to say about medication for disabled children and since I don’t want to be shrill, I am venting in writing. To these parents, I wish I could say,
Look, we have all been there. We are educated, intelligent, middle-class women. We are used to working, studying, solving problems and when it comes to child-rearing, we think if we just exert the effort, put in the time, we can work this out.
Special needs kids are wild cards. No amount of hubris or just plain effort is enough. Anecdotally, I know of many, many parents who finally, out of options, tried medication for their child, only to exclaim, “We should have done this years ago!” I know of no one who has ever said, “This was a huge mistake.” No one.
Maybe I am being harsh. After all, my children’s needs were so severe and so obvious that it was evident at age three . . . . they needed medication. In fact, often thereafter, a new doctor would say off-handedly to me, “Ever consider medication?” To which I would laugh uproariously, and say, “He IS on medication!”
It seems even more warranted in children whose needs are slightly less severe than my kids’ and who are trying desperately to keep up in a regular classroom. That seems to me particularly unfair. For a child with ADHD or a debilitating anxiety disorder, the playing field will always be tilted against them.
When it comes to medication for special needs children, it seems we parents all eventually have that "come-to-Jesus" moment.
I had breakfast with a friend yesterday, a mother of a classmate of Jeff’s. We agree on this: the choices we make for our special needs kids are usually more about us than about the kids. I am not sure what that says about my parenting. If it means that I am lazy and looking for a quick fix, so be it. But after 18 years with Hart and Jeff, if there is any fix, I not found it, and I sure have looked.
Last weekend, Jeff and I attended a community camp-out through our synagogue. I love this event, although I haven’t attended in several years. One of the great things is that it attracts a cross-section of membership, from families with toddlers to teens, to a few older people without children. As ever, there are lots of adopted kids and an overlap of parents with children with special needs. I must be the grande dame of that demographic.
I found myself in a cluster of four mothers, two of us encouraging the other two to get wills and estate planning done. “You don’t want the state to determine what happens to your child, if some tragedy befell you!”
But I had the sinking feeling of deja vu when one parent said she had taken her daughter to the neurologist Jeff goes to, hadn’t liked what he had to say and left. I asked, “Who prescribes medication for your daughter?” I regretted this the minute I said it, because I saw the familiar squirm that I used to encounter so often. “Oh, we aren’t ready for that, yet.”
I have a lot to say about medication for disabled children and since I don’t want to be shrill, I am venting in writing. To these parents, I wish I could say,
Look, we have all been there. We are educated, intelligent, middle-class women. We are used to working, studying, solving problems and when it comes to child-rearing, we think if we just exert the effort, put in the time, we can work this out.
Special needs kids are wild cards. No amount of hubris or just plain effort is enough. Anecdotally, I know of many, many parents who finally, out of options, tried medication for their child, only to exclaim, “We should have done this years ago!” I know of no one who has ever said, “This was a huge mistake.” No one.
Maybe I am being harsh. After all, my children’s needs were so severe and so obvious that it was evident at age three . . . . they needed medication. In fact, often thereafter, a new doctor would say off-handedly to me, “Ever consider medication?” To which I would laugh uproariously, and say, “He IS on medication!”
It seems even more warranted in children whose needs are slightly less severe than my kids’ and who are trying desperately to keep up in a regular classroom. That seems to me particularly unfair. For a child with ADHD or a debilitating anxiety disorder, the playing field will always be tilted against them.
When it comes to medication for special needs children, it seems we parents all eventually have that "come-to-Jesus" moment.
I had breakfast with a friend yesterday, a mother of a classmate of Jeff’s. We agree on this: the choices we make for our special needs kids are usually more about us than about the kids. I am not sure what that says about my parenting. If it means that I am lazy and looking for a quick fix, so be it. But after 18 years with Hart and Jeff, if there is any fix, I not found it, and I sure have looked.
April 7, 2014
Dental-schmental
I need some quality-, alone-time with my gums.
_________________________ Hart, post-orthodonist visit
So long ago . . .
March 17, 2014
January 11, 2014
My mother forgot to tell me not to talk to strangers
I am almost compulsively friendly, an enthusiastic talker-to-strangers. It wasn't always so. My friend M and I have a running a joke about about asking a man a harmless question like, "When is the train expected?," or "Do you have to feed the meter today?," only to be met with an uncomfortable mumble, "Um, I am waiting for my girlfriend." I used to think this was code for "Are you hitting on me? You aren't attractive enough to speak to me. Go away," but now I give myself the benefit of the doubt; I assume it means, "Just go away." So much for asking strangers innocuous questions!
But since I have had the boys, I have become utterly shameless about talking to strangers. I ask other shoppers for their opinions, I discuss produce with passers-by at the grocery store, I offer suggestions to hapless shoe shoppers, I flirt with toddlers and their parents. I began this behavior, I think, to model pro-social interactions for the boys, thanking servers and cashiers, asking librarians and retail staff for help.
Truth be told, there are darker reasons. Middle-aged women become background and fade into invisibility. To wit, no one has told me of their girlfriend's imminent return lately. And even sadder, for twelve years, when 98% of my interactions were with Hart or Jeff or their teachers, I was just lonely, and longed to talk to a normal human being, without the onerous backstory of parenting two disabled children. There, I have admitted it.
Now it has become some bizarre habit. I am not affronted if people don't engage. A one-word answer or lack of eye contact is hint enough.
Recently, I had an experience that made me question whether I have become intrusive or annoying, or both. An old friend and I met for coffee, settling ourselves into a circle of armchairs at Starbucks. Another man was already occupying one of the chairs and working on his computer. Periodically, he looked up and smiled at us, as we caught up on a decade's worth of news. At one point, an older gentleman came over to greet this guy, and I noted that computer-man responded in Israeli-accented English.
As we were getting up to leave, I said, in Hebrew, "I see you are an Israeli. I was just there this summer." (I have done this before. Usually if you tell someone you have been to their home country, they ask how you liked it and what you did. In the case of meeting Danish people, they always laugh because the one sentence I can say perfectly in Danish is, "I don't speak any Danish.") To my astonishment, this guy leaned forward and said, clearly, in English, "Why do you tell me this? I do not care at all that you have been to Israel." My friend was at once, embarrassed and horrified. I backed up a few feet. "OK, excuse me." It was not enough. "I DO NOT CARE AT ALL. WHY TALK TO ME?" I put up my hands and made a hasty exit.
Uncalled for, right? But I imagine this guy going home to tell his friends and family, "I was drinking coffee, working on my computer, minding my own business, when some crazy American woman starts speaking to me in Hebrew. What is that about?"
Maybe I should think about dialing it back. Hart and Jeff are unlikely ever to be appropriately social. My job as an example is over. Now I am just stuck with a bad habit.
But since I have had the boys, I have become utterly shameless about talking to strangers. I ask other shoppers for their opinions, I discuss produce with passers-by at the grocery store, I offer suggestions to hapless shoe shoppers, I flirt with toddlers and their parents. I began this behavior, I think, to model pro-social interactions for the boys, thanking servers and cashiers, asking librarians and retail staff for help.
Truth be told, there are darker reasons. Middle-aged women become background and fade into invisibility. To wit, no one has told me of their girlfriend's imminent return lately. And even sadder, for twelve years, when 98% of my interactions were with Hart or Jeff or their teachers, I was just lonely, and longed to talk to a normal human being, without the onerous backstory of parenting two disabled children. There, I have admitted it.
Now it has become some bizarre habit. I am not affronted if people don't engage. A one-word answer or lack of eye contact is hint enough.
Recently, I had an experience that made me question whether I have become intrusive or annoying, or both. An old friend and I met for coffee, settling ourselves into a circle of armchairs at Starbucks. Another man was already occupying one of the chairs and working on his computer. Periodically, he looked up and smiled at us, as we caught up on a decade's worth of news. At one point, an older gentleman came over to greet this guy, and I noted that computer-man responded in Israeli-accented English.
As we were getting up to leave, I said, in Hebrew, "I see you are an Israeli. I was just there this summer." (I have done this before. Usually if you tell someone you have been to their home country, they ask how you liked it and what you did. In the case of meeting Danish people, they always laugh because the one sentence I can say perfectly in Danish is, "I don't speak any Danish.") To my astonishment, this guy leaned forward and said, clearly, in English, "Why do you tell me this? I do not care at all that you have been to Israel." My friend was at once, embarrassed and horrified. I backed up a few feet. "OK, excuse me." It was not enough. "I DO NOT CARE AT ALL. WHY TALK TO ME?" I put up my hands and made a hasty exit.
Uncalled for, right? But I imagine this guy going home to tell his friends and family, "I was drinking coffee, working on my computer, minding my own business, when some crazy American woman starts speaking to me in Hebrew. What is that about?"
Maybe I should think about dialing it back. Hart and Jeff are unlikely ever to be appropriately social. My job as an example is over. Now I am just stuck with a bad habit.
December 9, 2013
November 19, 2013
Photo fatigue
My friend Mark once explained to me that while he loved cats, he is not interested in seeing photos of his friend's cats. (I myself am generally up for any cat-viewing on offer.)
Last week, I had the realization that I don't care for viewing photos of strangers' children and grandchildren. I have a dear friend who whips out her phone photo album every time we get together . . . . I don't know those people, much less their descendents!
Now I realize that I have been in the habit of sharing photos of our part-time cat, Inky. In other words, I bore my friends with pictures of a stranger's cat. To everyone, I can only say "mea culpa."
Last week, I had the realization that I don't care for viewing photos of strangers' children and grandchildren. I have a dear friend who whips out her phone photo album every time we get together . . . . I don't know those people, much less their descendents!
Now I realize that I have been in the habit of sharing photos of our part-time cat, Inky. In other words, I bore my friends with pictures of a stranger's cat. To everyone, I can only say "mea culpa."
November 16, 2013
Arlo Guthrie (photo)
Alas, this is slightly blurry, but Meiya and I did ask Arlo if we could take a photo with him. Hart took the picture but he was mortified that we were such dorks.
November 14, 2013
September 24, 2013
September 12, 2013
Diagnosis Redux
I have long ago given up on the ceaseless quest for an accurate diagnosis for the boys. I mean, I can see the individual stars, I just don't have a name for the constellation. Like many other parents of special needs kids, I have opted to become an "opportunistic diagnostician." In other words, if a program or service requires a specific diagnosis, that's what we have!
I didn't use the term "autism" much, because no doctor or educator ever called either Jeff or Hart by that term. In fact, I studiously avoided the word for many years, for fear that Jeff would be removed from The Cove School. Cove is licensed to accept only learning disabled students. So "learning disabled," it iwas!
Lately, I have been more free with the term, although it is inexact. "Regulatory disorder" sounds so prim and clinical. Also, I use "autistic" to relay to the general public, "Appropriate social behavior cannot be assumed." That seems to work well enough.
Recently, our pediatrician, who specializes in genetic disorders, recommended having a new blood test done. The microarray shows genetic deletions which are linked to autism. I wasn't sold on the idea.* However, as the insurance pre-approval wended its way through our insurance company, I grew more and more excited about the test. "Maybe we can find out some information about your birthparents," I told Jeff. "Why not have Hart tested, too?" I asked the doctor. After the blood draw, a few weeks went by while I waited for the results.
But suddenly, I had an epiphany. Why would I expect the test to show anything? I realized years ago, intuitively if not by concrete evidence, that Hart's and Jeff's issues are caused by environmental factors. Still, hope springs eternal.
Then the doctor phoned me to discuss of Jeff's blood test. The results revealed . . . nothing. There are no genetic abnormalities that are predictors for autism.
* You know it is trouble when a doctor says, "The test is very expensive."
I didn't use the term "autism" much, because no doctor or educator ever called either Jeff or Hart by that term. In fact, I studiously avoided the word for many years, for fear that Jeff would be removed from The Cove School. Cove is licensed to accept only learning disabled students. So "learning disabled," it iwas!
Lately, I have been more free with the term, although it is inexact. "Regulatory disorder" sounds so prim and clinical. Also, I use "autistic" to relay to the general public, "Appropriate social behavior cannot be assumed." That seems to work well enough.
Recently, our pediatrician, who specializes in genetic disorders, recommended having a new blood test done. The microarray shows genetic deletions which are linked to autism. I wasn't sold on the idea.* However, as the insurance pre-approval wended its way through our insurance company, I grew more and more excited about the test. "Maybe we can find out some information about your birthparents," I told Jeff. "Why not have Hart tested, too?" I asked the doctor. After the blood draw, a few weeks went by while I waited for the results.
But suddenly, I had an epiphany. Why would I expect the test to show anything? I realized years ago, intuitively if not by concrete evidence, that Hart's and Jeff's issues are caused by environmental factors. Still, hope springs eternal.
Then the doctor phoned me to discuss of Jeff's blood test. The results revealed . . . nothing. There are no genetic abnormalities that are predictors for autism.
* You know it is trouble when a doctor says, "The test is very expensive."
August 31, 2013
New York Times quotation, another adoption gone awry
Experts warn that adopting siblings, particularly toddlers, can take a considerable toll. “With two children coming home at 2 or 3, it is likely that one or both will have behavioral issues,” said Dr. Lisa Albers Prock, the director of the adoption program at Boston Children’s Hospital. “I tell parents to proceed with caution.”
August 25, 2013
August 24, 2013
Post-camp letter to program director
I have been meaning to write to you . . . I cannot get over the change in Jeff, since he arrived home. He is so much more articulate and mature. He has voluntarily taken over additional chores, without even being asked.
He has taken a lot of initiative in starting conversations, or participating in ones going one around him.
This evening I took him to an adult "live lit" event, sort of storytelling for adults. He went up to compliment the storyteller whose story his liked the best, then he bought me dinner!!!!!
Jeff confided, "Now you know my secret: I think parents are really important."
Lydia
He has taken a lot of initiative in starting conversations, or participating in ones going one around him.
This evening I took him to an adult "live lit" event, sort of storytelling for adults. He went up to compliment the storyteller whose story his liked the best, then he bought me dinner!!!!!
Jeff confided, "Now you know my secret: I think parents are really important."
Lydia
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