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A Mother's Anguish

Today's Boston Globe has an article by the mother of a nine-year old whose son is afflicted with what some term "pediatric bipolar illness." Her reflections are poignant, heart-breaking, and conclude:
 

Yes, I would love to find another way to find some peace inthe storm, but unless you live in my house or have walked in my shoes,please do not second-guess my decision to have my son on psychiatricdrugs. It is all my family can do to get through the day without thiscriticism.

Clearly, there is no consensus on what children likemy son need to thrive, or even survive. However, in all the noise, Ican still celebrate my child in his incredible complexity and remindmyself that I am trying to do the best for him. It is just an awfulfeeling not to know what the best is.

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The biggest source of "anguish" for those of us dealing with kids who are different are the people who want to to use us and our kids to make their point about what's wrong with our society--parents are too permissive, they're not breastfeeding long enough, they're not putting their kids in a family bed, they're letting them watch "Sesame Street," they're relying on secular health structures rather than prayer too much, they're not spanking their kids enough, they're not letting "boys be boys," they're feeding their kids the wrong food, they're routines are not strict enough, their routines are too strict, blah blah.I don't pay attention to these people anymore, because I need the energy to deal with my kid. But whe I DID pay attention to them in the bad old days, most of their advice turned out to be bunk.The foil to such people are the ones who see what you're up against and offer something encouraging. Our old priest used to tell me not to worry, that he'd seen tons of kids like mine and they were the ones who turned out to be the movers and shakers. Or the school secretary, principal and teachers who'll e-mail you with GOOD news about your kid once in awhile. Oh, and my son's cat who sits in the window and waits for him to come home from school, watches him draw pictures, listens to him play his trombone, and cuddles up with him at night.Until you've been there, you just don't know what kind words and encouragement mean. I think this is what Christ would say to us parents of difficult children, and maybe he IS saying it through these kind people. And even that damn cat whose cost me a fortune in screen door replacements by climbing up them.

I think there is a tremendous need for ministry to the families of these children. At the church where I say Mass on Sundays, a couple of years ago, we had a gathering of such families and their children, and I came away in awe of the daily sacrifices that parents and siblings made for the sake of these "different" children. I'd be interested in knowing what parishes and other institutions are doing by way of support and assistance for such families. And those who, like Jean, have such children, what would you like to see your parishes, or simply other people, doing?

I would never categorically criticize parents who medicate their children. However, we don't know what we don't know, and I have tremendous fear that medicating very young children with powerful neurological agents in particular, will have consequences that we can only guess at. It's also possible that not medicating will lead to more self-destructive cycling that, once started, will not reverse itself. Clearly, a greater understanding of neurological functioning is necessary. Until then, these children are like guinea pigs.

Boy, I REALLY need to hear from someone is that I'm letting the medical establishment use my kid as a "guinea pig." Well-intentioned as I'm sure Barbara is, I would invite here to come and live with us for a month and then decide whether what we can only guess with the meds seems a better alternative that what we KNOW will happen when the kid is unmedicated.The reality is that most parents opt for the med that has the longest history in treatment and begin with the smallest, most infrequent dose possible. Then we work REALLY HARD to supplement those meds with behavior mod--my son is now able to be off his meds in the summer--meeting with teachers, and ensuring that the kid's asthma and allergies are under control. That's why I can only "afford" to work part-time. The reward is that you see that intensive work really DOES make a difference. As for Fr. Komonchak's query--what are parishes doing by way of support--the answer is very little. I canvassed six parishes in my area to see which ones might be able to take my son in CCD, and I got one response. But I'll have to schlep him 60 miles round trip to do it. One of the things we've done as a family to talk about religion at home--and avoid CCD--is watch movies like "Groundhog Day," "Millions," "St. Ralph," and even Zeffirelli's (sp?) hippie-dippy version of the life of "St. Francis."

Um, OK, I was a little harsh about Barbara's comments, and I apologize for popping off.I guess I've just heard the "guinea pig" analogy once too often. Believe me, there's nobody who fears the side- and long-term effects of these meds more than parents who have to decide whether to use them.

If guinea pig is too loaded of a term, I'm sorry for using it. I don't think you are using your child that way. My child also takes drugs. However, as the daughter and sister of some very mentally ill people, I really think those who advocate the use of drugs in young children need to go back and look at the history of the treatment of mentally ill people. If the notion of your child being "experimented" on shocks you, it should shock you into advocating for more research, not into getting angry at someone who is pointing out how much doctors are "trying and testing" even if they are genuine (as they surely almost always are) in their efforts to improve the lives of their young patients. I won't even go into the incentives many of them receive from pharmaceutical manufacturers to use specific drugs.

The one thing parishes could do for kids like my son is to be honest and admit they can't handle special needs kids instead of yelling, scolding, and making them do workbooks and rote memorization, which many are really unable to handle in long doses.The whole First Communion preparation process taught my kid to hate Church, something I've been trying to undo for six years.I learned long ago not to look to the Church for sympathy or support--that's for the model Catholic family with six well-behaved children who attend parochial school and get voted parish family of the year and ride in the village festival church float. But I do have a circle of friends in roughly the same boat with their kids, which has helped me keep sane. It would mean a lot if I read in the parish bulletin that the church recognizes that lots of parents are struggling with special needs kids and they're setting aside a couple hours once a month for coffee, prayer, and social time for those parents.Geez, this sounds really bitter, doesn't it? Ugh. I'll shut up and let somebody else get a word in edgewise now.

I was a DRE for a year (long story) and one of the catechists in the parish was Barbara Lampe, the Executive Director of NAFIM--National Apostolate for Inclusion Ministry: http://www.nafim.org/index.php The idea, if I understand correctly, is that not only should persons with developmental and other disabilities be regarded positively, but there should be a place in the life of the Church for their gifts to be put to work.Barbara's son Will, who is developmentally disabled, was my office assistant. His job, developed by my predecessor, was picking up the attendance sheets. He also played a mean guitar.There are many different kinds of challenges, and not all are so easily included. But it seems that parishes should be in the business of doing all they can to support these generous families.Silver Burdett Ginn publishes The Rose Kennedy catechetical program, which I didn't have a chance to work with but seems very good: http://sbgcatalog.pearson.com/program_single.cfm?site_id=7&program_id=21... very helpful contact person is Dolores Wilson, who may still be with the Washington Archdiocese--or they would know how to find her. She has very interesting views on inclusive liturgy. Here is another place for resources: http://www.ncpd.org/index.htm

Here are a few more resources and links from the National Organization on Disability: http://www.nod.org/index.cfm?fuseaction=Page.viewPage&pageID=9

In my diocese of Providence there is a program for persons with developmental disabilities called Spred (Special Religious Education. Its goal is to integrate persons with developmental disabilities into the spiritual life of the parish in communities of catechists who invite persons with developmental disabilities into their community. Usually there are seven catechists and five special friends with disabilities in each age appropriate community. Relationship in community is key to its success It uses an extraordinary method of education called Method Vivre which is a symbolic/ liturgical educational method. The program was developed in Chicago after Vatican II. I have been associated with the Spred program, and can attest that it is a remarkable program for both the catechists and their special friends. The following two web sites are for the Spred programs in the dioceses of Providence and Chicago where there is more information available Chicago: http://www.spred.org/index.htmlProvidence: http://www.dioceseofprovidence.org/spiritual_growth/?id=83

I think that L'Arche and other organizations do great job with the retarded and developmentally delayed. My son's Catholic preschool hired a young lady with Down's Syndrome to help out. She was a sweetie and the kids loved her. My son has never found someone with Down's Syndrome off-putting as a result. In fact, he feels a certain affinity with people who are different.I think, however, that that same kindness the Church shows to retarded kids has been slower in coming to kids with more "unloveable" conditions like ADHD, Tourette's, Asperger's, autism, etc. These kids usually don't have intellectual difficulties understanding the catechesis; they have problems tolerating the CCD class structure and feeling that the teachers care about them.

Jean,Elizabeth Kubler-Ross revolutionized cancer care by having young cancer patients talk to doctors in a conference forum. They had no idea. Kathy seems to have given you some leads in the church. Could you contact the diocese and offer to give a segment in clergy conferences on the experience of parents with special needs children in the church?That would also help other parents beside you.

Jean, we also had a class, combined 3rd and 4th graders, of whom a little more than half had at least moderate, diagnosed ADHD. We were able to mainstream this group somewhat successfully, only because of the teacher, who was wonderful with them. Whoever controlled his outbursts the best, and involved himself in the actual classwork as well, would receive the "prize" of teaching the last 5 minutes of the class.I had to sub once and was flummoxed. Some of the other kids were flummoxed too. But Jim did great with them. He only sent a kid "to the office" once. We sat down and I asked him why he'd been sent to see me. At first he shrugged; at length he said, "because I wouldn't stop doing this" (fart noise).It is hard to say why parishes don't do a better job, except that CCD is a little school, run by one person and a lot of volunteers. So controlling childrens' behavior becomes a real priority. You see this in Catholic schools. I once volunteered in a 4th grade class with a woman Religious who had a lot going on, but who had little tolerance (or time) for anyone who couldn't behave. There was this kid who was always in trouble. He really couldn't sit still. One day I looked at his desk and he was drawing this Audobon-like bird. It was amazingly intricate. One of my brothers, an exceptionally talented person, was diagnosed "hyperactive" as a little boy. After what he suffered in Catholic grade school and high school, it is easy to understand why he hates Catholicism. I read the Da Vinci Code just for him and my sister in law.If I were a DRE and a parent asked me to take a more difficult case, I would. But first of all I would say up front that we would do our best and that it might not work out great--we would commit to working with the child but could not guarantee non-messiness. (That is actually not that easy to admit.) I would get a one-on-one teacher, possibly a big friendly guy. Then it would be a balancing act--enough individual attention so that a) the child could learn as he does best and b) the "mainstream" classes could go well--yet also making sure that the child has at least some time with his peers. Because although Religious ed is educational, especially in that precious 6-10 age range where you can get them to memorize anything, still it should be more than that. It should be an experience of community and prayer, and the acceptance of the community should model the acceptance and love of God.In other words, it has to be a school. But it shouldn't be LIKE going to school. There should be a huge, faith-informed difference.

Jean, also, I once taught a high school CCD class that included a student with Asperger's. I'm sure I was able to communicate that I liked her, because I really did--although I'm sure I communicated frustration sometimes. The others at length developed relationships that even included mild, good-natured (taken and received) teasing. The experience was good but messy indeed, partly because my classroom management skills are nil. Sometimes I wasn't able to say everything I'd planned, and there was a lot to cover. Group activities were not useful to her. If I did it over again, I would request that most of her instruction would be private. Maybe she would come in towards the end of the class, when we had Q and A, and prayers. Then we could meet alone for a half hour. Something like that.I don't see anything wrong with a bulletin and/ or pulpit announcement like this:"St. Gertrude's Religious Education program has openings for volunteers with Special Education backgrounds. Volunteers would work one-on-one or in small groups with young people preparing to receive the Sacraments. Please contact (yadda yadda)."

OK, I've whined enough about my personal problems, so to get this thread back onto something others might be interested in, I think the original post and Kathy's comments in particular raise some questions that might be interesting to explore: Wouldn't it be interesting to do a snapshot of American Catholic religious education to see how well it serves various types of children with both mental, emotional, behavioral and physical handicaps? Do parishes connect serving "difficult" children as part of the whole "respect for life" movement? I find it ironic that Catholics want every child to be born, but they don't necessarily want 'em in their CCD program.Where parishes fail to serve "difficult" kids, is this a function of lack of understanding about the problem? Or lack of money/inability to get those "big friendly guys," whom Kathy rightly identifies as great with ADD boys. Where do parishes put their volunteer priorities? Is failure to serve "difficult" children a clergy problem or problem with the DREs? Are priests that active with religious ed? Especially in the wake of the pedophilia scanda? If so, to what extent has this left the hard-to-deal with kids unserved?Does curricula developed for children's faith formation engage problem children? Can it be adapted to fit various types of kids (sounds like Kathy has done a great job tailoring to needs of different kids, but this doesn't occur to all DREs).There's a huge RE conference in our diocese every year, and I'd be really surprised if people aren't talking about all this, but how does it filter down to the parish level?

Jean, I was struck by your comment about the fact that the Church, all the way from the local churches to the Vatican, tend to be a little too close to People magazine in the kind of families they hold up for emulation. Ah, if only Brangelina were Catholic! Such cute, cute kids! At any rate, I wrote something a long time ago on this topic, called "Wholesomeness, Holiness, and Hairspray," which tries to explore this phenomenon.https://www.americamagazine.org/content/article.cfm?article_id=2823

Jean, my sense is that it's partly a failure of imagination, problem-solving not being one of the great evident strengths of Catholicism, and partly time-consciousness. Two or three special needs children could take as much administrative time as the whole herd of mainstream kids, so I would guess that there are DRE's who already feel stretched to the limit who might hesitate to take on a big job. Not that this makes it right.The hypocrisy regarding life issues is just as you have said.In general, I think parishes make too few requests upon their parishioners' time. Why not ask a few big friendly guys to help out? I have never understood why we're so shy about asking.

"Boy, I REALLY need to hear from someone is that I'm letting the medical establishment use my kid as a 'guinea pig.'" Barbara seems to have addressed this more than adequately. I'll chime in that when our adoptive daughter was placed with us, she had been recently weaned off two of her three psych meds by foster mom #4, and we had to wait several weeks before we could get a different psychiatrist to make an independent assessment to get us off the last one.Foster mom #3 was an RN, well-meaning (we trust) but simply unable to discern genuine needs and she found a medical establishment all too willing to prescribe a magic pill. And another. And a third.It's not unreasonable to expect a serious discussion with a psychiatrist to discuss the medications of one's child--the whole long-term story that is: expectations, side effects, the clinical unknowns, and so on.We've become so accustomed to miracle medications that lower our blood pressure, suppress organ rejection, and even prevent conception, we don't realize the brain and personality are far more complex than most of these things. And doctors and scientists both are sometimes seeing things very dimly."Is failure to serve "difficult" children a clergy problem or problem with the DREs? Are priests that active with religious ed? If so, to what extent has this left the hard-to-deal with kids unserved?"Good questions. But I wonder why we so often place our expectations on professional staffing at a parish. Why not just form our own parish support group? And if we need professional advice on occasion, bring in medical or psychiatric or ministry experts to supplement our own leadership and direction.

That's true, Jean, but a lot of these kids are being given diagnoses of conditions that some psychiatrists don't even think exist in children, like bipolar disorder, as well as multiple or even inconsistent diagnoses by a series of doctors. If there's no observable pattern, or if the pattern cannot be explained/diagnosed/treated in a consistently effective manner (i.e., a treatment gives predictable results), one can legitimately ask if the provider has any idea what they are really dealing with. The other thing to remember is that some of these drugs are not geared to specific brain function but operate, basically, as anti-anxiety or tranquilizing agents. They are the proverbial hammer that is used when every problem (basically, disruptive behavior) looks like a nail. Many are not tweaking and fine tuning targeted neurological function.

Todd writes: It's not unreasonable to expect a serious discussion with a psychiatrist to discuss the medications of one's child--the whole long-term story that is: expectations, side effects, the clinical unknowns, and so on.We've become so accustomed to miracle medications that lower our blood pressure, suppress organ rejection, and even prevent conception, we don't realize the brain and personality are far more complex than most of these things. And doctors and scientists both are sometimes seeing things very dimly.Jean says: Frankly, Todd, I think you can say that about any med, whether it's for Tourette's or high blood pressure. Any med can affect moods and personality, have unwanted side effects, etc. I've taken asthma meds that made me feel like I was going to climb the walls.Parents also make a lot of mistakes because these conditions are not very well understood, and it's sometimes hard to get uncluttered advice from the professionals. They often want to take the quickest route to solving the problem, i.e., a pill.One question I've found that helps keep the docs and teachers "real" is this: What would you do if this were your kid? With doctors, it's also sometimes useful to say: Assuming our insurance put no strings on treatment, what would you say is the best course of action. Having been uninsured for a period, we discovered that what we were offered often depended on what the doctor assumed we could pay for.I hope your little girl is doing OK now.

Barbara, something I read not long ago illustrates your pint, I think. Many ADHD kids have packrat symptoms. There are, apparently, some people who packrat at a pathological level (filling up their homes with collections of things such that they are literally in danger of being buried alive). one "solution" was to hit that nail with Ritalin, the ADHD hammer.I later heard a radio broadcast about this same phenomenon, and the therapist working with packrats felt it was a compulsive behavior, and she had had a great deal of success helping people incrementally get rid of their stuff. No drugs were being used, as I recall.I'm not an expert, of course, but I have noticed that my son's medication has done nothing to relieve his packratti-ness. His desire to keep things seems unrelated to the ADD, but more to the fact that he's an only child of older parents. He's lost some elderly relatives and friends, and he hangs onto what looks like junk to me because it reminds him of these connections.

A story of interest even if a bit late.Lionel Sterling, the great american critic of literature, argued that there was no such thing as writing bloc. He argued that things were too complex and that is the reason for the bloc. After his death his son wrote that this was faulty. His father really had ADD and that is why everything seemed complex to him.Go figure.