Susan's Blog

Thursday, February 25, 2010

An Extra Helping of Tsuris on Your Plate

When Nat was 7, he suddenly stopped sleeping through the night. It is an old story already, mine and so many others, of how our lives felt crushed underneath exhaustion without end and the fear that this would never get better. It is old but sharp and terrifying, still lethal, like a rusty knife hiding in the grass. It took months before we found a doctor who knew his ass from his elbow, and prescribed a drug that we had already told about (from my sister, who is a pediatrician) if he would have only listened to me, just a mother…

But let me tell you, I felt so horrible about the idea of giving Nat a drug when he wasn’t sick. The drug meant, to me, that he had something wrong with him and I did not want to see him that way. I don’t see him that way. As they said in that Temple Grandin movie we all loved, “Different, not lesser.” When you say “something wrong with” and the person is not sick — and I do not believe that anything environmental made Nat autistic; he was always autistic and I will show you the baby vids if you’d like to see — you are implying something bad is going on.

(I don’t even like to have to say, “different, not lesser,” frankly. I don’t know why, and I’m tired so I’m not going to try to figure it out. Just a feeling like I’m tiptoeing around Nat when he gets to just stomp all the time.)

The medication question was different when Nat was 11 and out of control in terms of aggression. Out. Of. Control. More accurately, we were out of control of him. I was terrified of my own little boy. One doctor was saying how he needed to go into the school’s residence. Or something even more restrictive. My heart was breaking, but still I kept thinking that if we could just find the right experts to work with him, we could avoid dire action. I called my dad and sobbed into the phone, “They’re saying I should send him to live at his school.”

My parents said that I didn’t have to do that. “Try that medication,” Dad said, referring to Risperadal, an anti-psychotic medication that our psychiatrist had mentioned. But Risperadal has potentially dangerous side effects; other than big weight gains, Risperadal can cause Tardive Dyskenisia, heart, and liver problems.

Ned and I knew that Nat was not ready to live away from home and that I certainly was not ready for it. I’m barely ready for it now, and he’s 20. At the time I thought it was the worst thing you could do to a kid. Those parents that “went residential” we talked about in whispers — like there was something wrong with them! I thought if I sent Nat away that Nat would think he was bad. My heart was breaking. How could God put so much on a family? How was it that I had to make such a choice — either give Nat this serious medication, or send him to live at school, or continue to live with violence and outbursts. We made the decision to try the drug on him. We made it quickly but we made it with deadly seriousness.

My mother called my attention to the new book We’ve Got Issues, by Judith Warner. I have not read it, but I read a review of it today, which described how Warner set out to show how much and how easily we all (over)medicate our kids. But what Warner actually found, upon doing her research, is that her thesis was pretty much incorrect — that parents actually mostly make the decision to put their kids on medication after much deliberation and agonizing, and as a last resort.

I am very glad for Warner’s integrity, to shift her thinking and not try to bend her observations and data to fit her theory. But it also annoys me a lot that Warner believed what she did — that so many of us do. It is so easy for people to believe the worst things about parents today. Parents are our favorite punching bag. It’s so easy to judge others, to think that parents are going off half-assed and carelessly making decisions for their kids. I don’t know anyone like that; do you? Even if I disagree with a parent’s beliefs or choices — I don’t have Nat on a special diet or chelate him, my feeling is (nearly) always one of empathy. I think to myself, Well, I wouldn’t do that, but I don’t know what her thought process is. I don’t know what goes on inside her house. I don’t know what she’s seen her kid do or no longer do. How the hell can I then assume that she is making a decision without much thought, without sleepless nights and weighing options? Punch, punch.

Does the general public actually believe that most parents just decide to give their kids drugs simply to make them achieve more at school or make their lives easier? Why? Why is it so easy to believe the worst in people who are parents, especially people who have a double helping of tsuris on their plate? Do we really believe that parents are that irresponsible and selfish? I’m not talking about the tragic ones who make the headlines. I mean me; I mean my friend Sheila, whose son Sam scaled ten-foot playground fences or crossed Route 9 at night just to see the new pet shop. Or the mom who didn’t get to take a shower today because she is too afraid to leave her kid for a minute. Or you. Can people honestly look at us and say that we are taking the idea of medication lightly? I think it’s what my great-grandma Sarel Wolfson said, that we all have our own bundle of trouble. Maybe we’re just different — but not less.


Excellent post!
As a mother of 2 sons with severe autism I struggle greatly with the question of medicating or not medicating.
Just this week my older son Sam went to see the child psychologist and psychiatrist and as I suspected they are recommending Risperadal. When he was 2 I was dead set against it.
Now at 7 he is stronger, more forceful, and much of the time seems agitated and unhappy.
Now is the right time for our family and for Sam…but it took us 5 very long years to get here.

— added by Sunday on Friday, February 26, 2010 at 11:14 am

We have one medicated, one that might need medicating sometime in the future, and one who doesn't. (The one who doesn't is our daughter, the other two, sons.)

We tried other things with our older son before medicating, with no great result (and these were recommended by a pediatric neurologist) before we considered anything from the pharmacy, and again, it's a pediatric neurologist who is handling the brain-affecting medications.

We proceed as cautiously as we can with it. And, well, when we try to back off on the medications, he ends up not being as happy as he is on them, so right now, at least, we must be doing something right. (He's generally a happy kid, which is good for him and pleasant for the rest of us.)

— added by Julia on Friday, February 26, 2010 at 12:05 pm

Get outta my head, Susan. 😉 Have you been spying on my brain? I was chastised by a well-meaning friend this morning about how I shouldn't be upset that the doctors yesterday didn't give us the rx we desperately need, and how drugs for kids are bad, blah blah blah. This mother also has 2 NT children and has no damned clue what I (or you, or any other special needs mom) go through every day. I resisted the urge to reach through the screen and throttle her into next week, and instead chose to educate her. I let her know just how much of EVERYTHING ELSE we have tried, how much of a struggle it has been, how difficult it was to get the appointment with the drug prescribing doctors in the first damned place, and that parents seeking meds for their child are not always looking for a "quick fix," and are more often than not at the end of their rope and seeking meds as a last resort. She mea culpaed quickly.

Excellent post as always, Susan.

— added by ASDmomNC on Friday, February 26, 2010 at 12:10 pm

How can you be so sure that you were not exposed to something environmental while pregnant with Nat? You can't. We are all exposed to toxins everyday and what doesn't affect us may very well affect a child. To say point blank that nothing environmental caused his autism is like saying nothing environmental can cause cancer. Nobody knows what can cause autism in different children and environmental factors may be a real possibility when a child is in utereo. How can you just write that off when many doctors don't even discount that?

— added by Anonymous on Friday, February 26, 2010 at 1:47 pm

I don't know for sure what did or didn't cause Nat's autism. I don't, however, equate autism with cancer so I think that that example is apples to oranges.

I'm not discounting anything for you and your family, however. My point is the harsh judgment people have for those who don't believe what they do.

— added by Susan Senator on Friday, February 26, 2010 at 2:42 pm

Thank you for this, Susan. Risperdol has made such a difference for our Leo – he sleeps, he engages, he's *happy* — it's as though his skin had been on fire beforehand, and Risperdol doused the flames.

Sunday, we too struggled with this decision, for years. And we tried a few different medications before finding the one that worked — some of them were simply not helpful, others had horrific behavioral side effects. I wish there wasn't so much trial and error when it comes to helping our kids. But the possibilities, they are there. Good luck.


— added by Squid on Friday, February 26, 2010 at 2:45 pm

Very timely. When I pulled my son out of school I took him off of all meds and have been able to throughly observe him. I now am much more comfortable in making medication decisions based on what my son may need (help with significant anxiety due to inflexbility and fear) as opposed to what the school needs (shut up, sit down). But still, it's hard…quality of life now vs what I may be doing to his quality of life in the future. Sigh.

— added by Ange on Friday, February 26, 2010 at 2:51 pm

Great post Susan. I have been down this road and it's many offshoots. People applaud cause she's NOT on any medications. People tell me she SHOULD be on medications. I have gone to doctors who simply want to medicate her. I have gone to doctors who question why I would ever. Round and round it goes.

It's hard not to judge others when one feels SO very judged themselves. I have found myself at time judging those who medicate and those who do not. And I have come to realize that parents spend a lot of their time in this world of medication/no medication and they do not take it lightly or without a guilt or a sense of failure. I try so very hard now NOT to walk in another's shoes and judge. We all have our own paths and our own roads.

— added by Penny on Friday, February 26, 2010 at 3:29 pm

Thank you for this post. I think you said it so well…when your child is OUT.OF.CONTROL and you as a family are OUT.OF.CONTROL you may choose a road that you never thought you would. But when you do, (and often times as a last resort), and you can literally breathe again, and your child is happy and functioning and taking in the world you realize that it is a choice that works for you.
I often think…I wouldn't
not give my child insulin if he had diabetes, I wouldn't not give chemotherapy dispite isn't horrible side effects to my child with cancer. People also need to understand also that if there is a chemical imbalance in the brain, and there is a medication that can make that chemical balance better, that it is OK for someone to want to try it.
So, I can say with no guilt that it is not something we could "ride out", it was not responsive to every behavioral approach we tried and it actually has made the behavioral approaches that we are using now successful. To me it is just another way that people are extemely judgemental even within the autism community.

— added by Jenn on Friday, February 26, 2010 at 5:44 pm

It's not for everybody, that much is true, but for those of us who have lived through the worst of times, medication really helps. For years, we endured our son's aggression and tried everything we could find to help him. Risperdal was not a choice we made easily for our son and we still balance this choice every day with what else we can do for him. You're absolutely right; no one can know what it is like so no one has the right to judge. We do the best we can each time and if it isn't good enough, giving up is never a choice. We simply try harder.

Bless you, Susan! (And virtual hugs to your family!)

— added by okasaneko on Friday, February 26, 2010 at 9:38 pm

Exactly, exactly! This is great. I, too, don't agree with other parents' decisions, but I have the greatest empathy for them. We are all doing our best.

— added by Brenda on Saturday, February 27, 2010 at 10:28 am

Susan – Please, please read " Autism and it's Medical Management' by Dr. Michael Chez, whom I think is a decade or more ahead of his other mainstream peers in the management of behaviors of different autism subtype using various pharma therapies. He is the head of the Sutter Health System . Neuroscience team and people like us fly in from all over the world to see him (I think it's now a 6 month wait for his his existing patients!)

— added by Anonymous on Sunday, February 28, 2010 at 9:33 am

Sorry to be late to the party, but another excellent post Ms. Senator!! You very astutely point out the balancing act our families live with while wrestling with this issue.

Jared started with risperdal at age 4, and tried various variations of that drug and last year in May we weaned him off the last of it, two months before his 10th birthday. Those extra pounds dropped off, and we saw true maturation in him, and his ability to cope – with a long line, with dropping the toothpaste cap, with life. He seems happier, meltdowns are very rare (maybe one in the past 6 months?! I'm shocked I can't remember). My long-winded point is that even though I was afraid to take Jared off the meds, that his behavior would revert back to his 4 year-old, the experiment has really paid off. He is growing up, and his self confidence is very evident, and it's nice to see.

Now, if we had a serious problem or issue, would we consider meds again? Absolutely. It's just really nice not being under siege any more. Lisa

— added by Anonymous on Monday, March 1, 2010 at 3:51 pm

Medication may be wonderful for helping children with difficult behaviors learn how to manage behaviors in more appropriate ways. However, I feel it is best to think of medication as something to be used on a temporary basis. The goal should be to wean the child off the medication as he or she learns to manage their behaviors through the use of individualized goal plans and positive reinforcements, which is what I did for my own daughter.

— added by Sherry on Thursday, March 4, 2010 at 11:50 am

The rest of the expression about your bag of troubles goes: "and if everyone put their bags in the middle of the room, you'd still take your own bag because at least with that one you know what you're getting".

— added by suzette on Sunday, March 7, 2010 at 6:47 am

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