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Stability of medication

2015

Hello everyone,

My question is regarding youths who take medication while they are at school or at a residential setting they live in but when they go home for family visits they are not given the medication prescribed to them for their behaviors.

I am doing my practicum at a school for adolescents who have disabilities. My classroom has five students who are on the Autism Spectrum. One of our students lives in a group home for kids with severe behaviors and the parents are no longer able to care for them at home. The student still goes home every week for family visits and seems to have a very strong relationship with them. The problem is when he goes home the family doesn’t give him the prescribed medication for his severe behaviors. I’ve asked the staff at the school why this keeps happening and the only explanation they were able to give is they believe it is a cultural belief of the family not to medicate their son. I have seen this happen a few times now. When he comes back to school after a family visit he is unable to function in a school setting and is usually send back to the group home a few hours after his arrival at school.

As a student observing this cycle I just feel like not much is being done to advocate for this youth and the stability of his medication. It is my understanding that people at school and at the group home are aware of what is happening but because there is no proof that this is occurring at home (other than behaviors) it’s all speculation. I’ve voiced this concern to other students and some have given me feedback that this is child abuse and needs to be reported or it’s the families decision on how to raise their child and we have no right to intervene in that choice. I’d love to hear some thoughts on the topic as I am stumped on what I can do in my position as a student.

Thanks,

Katelyn Morgan
...


Hi Katelyn,

It sounds like the disconnect over medication may be part of a larger problem. Are the school, group home, and family communicating together? There can be a hundred excuses for why they may not be, but they are partners together to support this child. Based on the child's age and development they would need to be the first to talk at the table together with everyone.

Start with bridging the communication - and the need to figure out the medication dilemma will give a good starting point.

Keep at it and don't give up!

James Freeman
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Good morning Katelyn,

There is really little advice I can give you as there is actually nothing we can do to enforce that his parents give him the medication he obviously needs. However, document, Document, DOCUMENT!! When you have clear concrete correlating data between his incidents at school correlating to his visits at home it can then be advocated for the visits to be supervised by a member of the group home or a third party who will then ensure the medication is being administered. If the medication is not being administered during scheduled supervised visits then the visits will then come under review.

Sarah Greenslade
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Hi Katelyn:

I have spent most of my short career working with adult and youth with intellectual disabilities. In my experience family is in short supply for those I have supported. The fact that the youth has a strong relationship with his family is fantastic! The fact that his family chooses not to medicate him while he is home is not uncommon. I would suggest that the school and the home he lives in make a reintegration plan for when he comes back to his residence. I would guess that had his family given him medication you will still see heightened behaviours when he comes back. Reporting the family most likely would not do anything and would only drive a wedge between the people that support him and his family. Celebrate that his family enjoys him and work out a reintegration plan for when he comes back to his residence.

Emily Gibbons
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Hi Katelyn:

I think that it might be important to point out that your discussion below (and I mean no disrespect, believe me!!) seems to make the assumption that this young person should be medicated. I think that it is healthy to ask the question in who’s best interest should this happen?

I would ask, how does the young person themselves feel about taking their medication?? I would also ask if they are able to communicate how they feel about taking medicine? Also, how do his family feel about him being medicated, perhaps they feel that it inhibits or subdues him? That he is not able to be himself?

I think your statement that the reason for his reception into your school that he exhibits ‘severe behaviors and the parents are no longer able to care for them at home’. This might also point to the ability to not just ‘care for’ but also to control his ‘severe behaviors’

I agree with two of Emily’s points below about the importance of having strong relationships with his family but also because she points out that there might still be ‘heightened behaviours’ when he comes back, (whether medicated or not).

I guess I am trying to play devil’s advocate a little here. For example, I assume that a medical professional or other suitably qualified person has made a decision to medicate this young person and as part of this has taken on board everybody concerned with his cares views on this. I think it would certainly be useful to have an open discussion about how to best manage his contact and transition between school and family and the potential stress and disruption this might be causing for him and of course appropriate use of medication should be discussed too.

I must then say however that I have always been quite sceptical about using medication to modify behaviour as this can be subject to misuse or even abuse (although this is probably based on personal experience). Medication and its use to modify behaviour is often used as a measure of control and I can speak about this from two viewpoints.

My concerns with this developed when watching my dad who was diagnosed (or potentially misdiagnosed) and treated as a schizophrenic, he was ‘sectioned’ under the mental health Act in the mid 80’s and admitted to hospital and gradually re-integrated back to our family on the condition that he received an injection every two weeks. As he got to the end of the two week period he became more restless, twitchy, unable to focus and I remember him rocking back and forth to self sooth. This was followed (immediately after the injection) by a 3 day period of being like ‘a zombie’, dragging his feet, salivating etc and around a 5 day period in between when he was reasonably stable.

Also, I used to work in an SEBD school around 15 years ago and worked with a boy who was easy to manage, co-operative, pleasant, who coped reasonably with his school work, who also spent 2 days every week in a ‘mainstream school’ and was full of fun but the issue that led to him attending our school was that at school during class time he didn’t speak. I managed break time and lunch intervals where he would play football and was boisterous and communicative but back in class he was back to being ‘mute’. I was stunned to find out that this young man was on the highest dose of ‘Ritalin’ in the school (by quite some margin) which was prescribed for ADHD.

Now, I met him years later at college where he was the same pleasant young guy but in his early twenties and (although making an assumption now too) was no longer taking this drug. I would also question the possible effects that medication has, in the long term at least, on the still developing brains of young people. My understanding is that when drug companies are trialling the potential benefits and effects of their drugs they are not allowed to conduct research on children at all. I think this should be questioned.

My post is intended to give some food for thought and is my first post but was prompted by your initial post Katelyn, so thanks for generating this discussion and hope I haven’t side tracked too much from your query.

Paul Orr
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Hallo Katelyn!

I appreciate Paul's approach to leveling an open and creative mind to this challenge. I would add to the inquiry by asking to what degree are his erratic or errant behaviors an expression of his inner experience of transitioning from home back to residential care? What capacities does the youth have for expressing his feelings about this transition and could his behaviors be seen as expression of said feelings? Why then medicate? Paul asks a good question of who do the medications support? Sounds to me they support the professional's expectations of having a docile client who fits in the system of caring they have in place, often a fairly rigid system in my experience where persons are to exhibit socially appropriate patterns of predictable behaviors that professionals are trained to manage. I mean to say, often professionals are more intransigent and inflexible then persons in need of care. Can the professional systems evolve or adapt to meet the cultural/contextual realities of the family system?

On the flip side, if his family are unable to care for him due to erratic and errant behaviors to the point that they need to farm out his care to others, then perhaps medications can serve the purpose of helping the individual decrease his anti-social tendencies to a point where he can be successfully integrated in a caring community, perhaps even a/his family? In this way can a caring professional invest time in the family to educate them on how medications may be like food and water or other things we as people consume so we can function in a social world with limitations to what we can expect from care-givers? What might that look like? What I mean is if my kids start to become grumbly or stumbly or mumbly ("the 'umbles'") my first thought is to inquire if they need food, water or rest; I care for their body. Maybe they need a good cry or a yell to burn off emotional overload. Maybe we need to slow down and sit for awhile (maybe this youth should get a day off school after he returns home from home visits to manage his body through the transition. Some may argue not fair, but life ain't fair!) Some of us require more than others for regulating our bodies and our medical system has developed medications as one way to address these needs. There are others, often more culturally specific (prayer, homeopathy, or traditional medicines). Maybe just slowing everything down is a good way to go and will support a successful transition for the lad. Can the family system be investigated and joined with to determine what the concerns with medication administration are and determine if growth can be made in this framework? Whose expectations are getting the most power and what assumptions are being made about definitions of professional knowledge over self determination liberty?

Explore both and determine a comprehensive and balanced approach.

Lean in,

Peter D.

Hi Katelyn,

I'm also a practicum student at Mount Royal University, in my second year of CYCC. I was going ask a similar question to yours, although on a different strain. I am in a high school classroom setting, working with five students, most of whom have Autism.

My student, 'B' has global developmental delay and epilepsy. He takes medication for his epilepsy because he was having between two and six seizures every day at school. Although we are happy he is having fewer seizures now, which is much safer for him, when he arrives in the morning he is so tired that he is essentially missing an entire morning worth of learning, specialized as it may be. It is nearly impossible to get him up and moving and engaged with others. In the mornings there are jobs he does which include walking, we go to the gym and fitness centre, and in addition he has vocational activities and simple games he plays in an effort to mentally stimulate him. We still struggle quite a little bit though - when he says he is physically tired in the gym he sits and can fall asleep against the wall...the same problem occurs when doing vocational activities if he is seated. He has a tendency to "zone out". I'm wondering if anyone has developmentally appropriate activities which might work for 'B', to get him moving and thinking in the mornings.

I get the sense, although I'm not positive, that he doesn't take medication on weekends. Taking it during the school week, however, helps to manage, or alleviate some of the stress associated with the frequency of his seizures. I think it is correct to say that it is not uncommon for children/youth to be unmedicated while at home. In their own space parents and caregivers, from what I see, are more equipped to deal with behaviours, or medical issues, however, it is significantly less safe and much more difficult to manage at school. We find that because 'B' is up and down stairs, and traveling around many areas of the school, it is safer for him to be medicated. Although his seizures are not convulsive, they are unpredictable, immediate and nearly impossible to prevent. At home though, there may not be a need to medicate.

Thanks so much!
Andrea Shippey
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Katelyn I am glad that you got a discussion going on this because I would also have a few thoughts.

First of all do not assume that medication for mental, emotional or behavioural issues is necessarily more helpful than not. All come with side effects and some of these are actually even the same or other behavioural issues.

Secondly do not assume more drugs means things will get even better. Note the above and note that all children/adults react to different drugs in different ways.

Thirdly keep in mind what was stated about none of these drugs being properly tested on kids. This means that we are all working in the dark and have little to no idea of the long term effects of the medications we are using.

Fourthly always work to bring to the table the idea of an exit plan or how the medication can be moved out of their system. To me this is vital because children grow and change and we will lose track of what is `them' and what is the `drugs' if we do not provide this opportunity; with the support of the doctor and the family.

Finally remember that a drug is a drug and thus some of the behaviours you are seeing are likely caused by the beginnings of withdrawal from a drug. As with any drug withdrawal our symptoms can get worse during this stage.

To be honest I wonder how we will be speaking about our excessive use of drugs with kids in the future. I regularly deal with kids that have been on multiple drugs since before school age and this has been going on for years without a break. I feel greatly for doctors and psychiatrists as so many appear to be coming to them asking for help, any help, and medications is the one thing they have to offer. We have so much more to offer, in our work, for example supporting changes in the environment, lifestyle and parenting. I often wonder what would occur if we could prescribe sleep, a healthy diet, exercise, times to connect and people followed these as faithfully as many take the drugs.

From a front line perspective I do see some assistance with only some of these drugs. For example anti-psychotic drugs, which are often prescribed to kids, seem to only cause an overall `flatness' that is helpful for those dealing with them. However I am often unsure of how they are actually helpful for the child. On the other hand I have seen some anti-depressants be very helpful with teens and some ADHD meds appear to be helpful for anyone; although there are side effects. To me they too often seem to be given a message that without drugs we are less then capable of dealing with a wide variety of issues.

The bottom line, I would believe, is that we, as CYC professionals, need to consider how we collude with the medical establishment in our support of medication. I would believe that our job is to advocate, educate and support the family in what they think is most helpful while also collaborating with the medical community in a way that gives them other ways of considering either the use of drugs or the issue that is being dealt with.

Personally I would not believe we are currently doing a very good job with either.

Janet

Hi Katelyn,

This may be of interest. Not everyone is in the pocket of Global Pharmaceutical companies.

https://www.psychologytoday.com/blog/suffer-the-children/201203/why-french-kids-dont-have-adhd

Peace,

 Jeremy Millar
...

Hello Katelyn,

Although some young people often can't function adequately enough to be able to focus at school and move forward academically without medication, I do have to concur with much of what you have written. However, we do need to recognise that some medications are a real life saver for some young people, BUT, personally I am not a big fan of psychotropic medication for growing and developing youngsters because as you rightly point out, not enough research or longitudinal studies have been conducted to determine the impacts of these drugs on growing brains and bodies. This is an issue which should be examined more closely.

Delphine Amer
...

Hi everyone,

As I read over the posts on the topic of medication, many great points have been made. Emily raised the importance of the family unit and togetherness. I lean with Paul regarding the idea that a deeper investigation is warranted with any individual case that states a child is in need of being medicated. Even with a thorough diagnosis, we need to ask if medication is in the best interest of child. Having worked in many school boards, and other sectors, I have seen a range of responses. Some children have been put on medication when it actually wasn't needed for a variety of reasons including misdiagnosis, a solution to the child's "behaviour"/family dysfunction, and so forth. Some parents/guardians have resisted medication and tried alternatives for their child. And there are the few rare occassions, where it was felt that indeed medication was warranted as the answer. However, even in saying that, non-medicated alternatives were not tried with that particular child. Alternatives one can consider are: diet, mindfulness practices, sensory manipulations, structure, and so on. In some school boards, some staff are trained in ABA (Applied Behavioural Analysis) in order to provide support to children in the pathway of positive change in behavior. When we are talking about medicating a child, we should ask if introducing a drug into their system is the best idea. Paul spoke to another important factor: the voice of the child.

For a while, at a distance, I have been in dialogue with one family whose son was diagnosed with Autism at any early age. In the last two years they have taken the non-medicated route. Previously, the child was on medication for years and it appeared to have a lack of positive results nor of benefit to the child. According to the parent, now his son is more stable, happier and exhibits more control over himself than when he was under medication. This stability has had a positive impact at school and in his relationships. He has even taken on a leadership role in helping younger children, readily and positively engages in social activities, and has been successful in pursing his shared dreams.

Katelyn, thank you so much for raising this topic in which we can share our insight, experiences, and thoughts. All the best on your student placement,

Mary Anne
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