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Labels and the Mental Health of Children

Tina Simpson – Posted on August 22

“Wow, I am kind of a little freaked out” exclaimed my 8 year old as I reached the top of the stairs.

He turned off his iPod touch in the middle of the conversation with his best friend, without saying good bye, and there was no eye contact as he brushed past me.

I turned and followed him, questioning why he was “freaked out”.

“Well, I noticed that the TV kept freezing, which was weird, and then the lights in my room flickered on and off and there was no one in there.”

My concern piqued a little. Schizophrenia runs in my family and this sounded very familiar to an episode my brother experienced when he was first experiencing symptoms around the age of 23.

I was going to just leave it as something to keep an eye on, until he said

“…then my friends voice turned into the voice of the devil”.

Kids don’t have mental health issues, and other misconceptions

My first step was to do some research. I am very aware that the average age for schizophrenia to rear its head is in the early twenties. My older child has experienced instances of hallucinations and they never felt concerning because he was very grounded in reality. He was seeing visual wisps of images that didn’t make sense to him, and they were very fleeting.

So why was I concerned this time?

My first clue that something was different was when my brother, whom is diagnosed as schizophrenic, came to me and noted “Do you realize that he is talking to people who are not there, right?”

As a 4 year old child, my youngest would be constantly mumbling to himself. When I asked whom he was talking to, he would always respond that he wasn’t talking. I would press him by insisting that he was in fact talking out loud and he would insist that he was not. I would try to catch his conversations but they were very hard to catch because he was constantly moving and mumbling quietly.

An article in Medical News Today outlined some of the symptoms to look out for in the extremely rare instance of early onset schizophrenia. As I read through them my understanding of my own child shifted from confusion to clarity, as I recognized so many of these symptoms.

Ever since he was very little we noticed that he often made up his own reality. Imagination is very normal for children, and our experience with his older brother was a great reference to compare to. The difference with my younger child was that he would have extreme emotions attached to these memories. He would be angry at us for things we didn’t do, and questioning him or denying his reality would make the situation way worse.

At one point, I was sure that he had multiple personalities: His food preferences I noticed vary greatly, with favourite foods suddenly “tasting weird”. His appetite fluctuates from barely wanting food for days, to ravenously hungry.

He is a sweet boy who loves to cuddle. He is a wild boy who refuses to make eye contact and is extremely defiant. He is an angry boy who aggressively refuses to accept any external love or support. These emotional changes, normal in all of us, happen instantly irregardless of external stimuli.

A few have witnessed the angry boy and every single person expressed concern for the intensity of anger, myself included. This boy, when triggered, has no control over his body, no empathy, and the scariest part is that he has no connection to the people he loves. My older son is upset if he gets into trouble. This is not the case with my youngest.

My biggest fear is the unavoidable cascade of hormones that puberty will bring.

Two years ago was the first time we asked for help and he was diagnosed with anxiety. His attacks, once they start, follow a super predictable pattern that I can almost time. He can be super positive and happy, and with no trigger at all suddenly become agitated and the spiral downward begins; the switch in his brain suddenly flips and my heart sinks as I realize we have to sit through another attack together. His anger towards me ferocious and illogical.

“That child needs more discipline” I can hear. My own devil sitting on my shoulder telling me that I am not a good enough parent and this is my own fault.

Discipline would make sense, if his anger made any sense. How do you discipline an upset child that has had no trigger at all? How do you teach him, when it makes no sense at all?

I continue my technique of sitting with him quietly, trying to reassure him until it passes, without encouraging it with extra attention. A delicate dance I am overly familiar with. Once he is released from the overwhelm of panic, his whole body relaxes and he runs off like nothing happened at all, once again being able to enjoy the joys of being a child.

I decided to research what real people were saying and I joined a Parents of Schizophrenics group — because young children don’t get it, right? I was looking to make sure that all of these parents were of adult children.

This group has multiple parents of young children who have been hospitalized for extreme hallucinations and delusions. Rare, I guess, means rare. It doesn’t happen often, but it DOES happen.

So now what?

Honestly, I probably would have decided against calling the doctor if my son had not expressed FEAR around a reality that did not exist.

After discussing it with my husband, we decided together that we were going to use medication as a last resort, but a doctor’s supervision was important at this point. We strongly believe in not altering his personality, but like so many parents before us, if his quality of life is diminished due to mental health issues, we want tools to be able to help him.

Access to a support network also seems extremely appealing at this point. A team of professionals who can help us sift through what is biological and what is behavioural, coupled with a plan of how we can provide the best help for him, is welcome.

Fear of “The Label” and the side effects of diagnosis:

As soon as we opened up to family about what was going on there was some feedback around fear of having my son labelled and thrown into the system.

This is a system that I grew up around; first with my brother getting lost in it as a young adult, and then again as an adult with my chosen profession as a group home councillor, and then manager.

I am not unfamiliar with the risks that come with mental health diagnosis.

What people do NOT understand, is the benefit that these labels bring to the caregivers in the afflicted person’s life.

Suddenly, there is a group of people who have similar life experiences.

Instantly, there are mental health support networks in place to help.

Immediately, the barriers that were once in place for this individual in a world that is set up for neuro-normative experiences, are removed. These barriers are replaced with support networks that help to navigate the tumultuous waters of life.

Where the risk comes in, is when the family members do not have any tools to help the child at risk, and they are removed from the home.

Where problems arise, is where a parent blindly follows the advice of the doctor, without trusting their intuition. Parents must make educated choices that INCLUDE the emotional and developmental needs of the child and the entire family unit.

The system is not perfect but its in place to help

Being a group home manager I dealt with a lot of families with children in care. What many people do not see, is that when a child is removed from the home, it is because needs are not getting met.

Feeding, clothing, discipline and love are not enough in these cases.

Children with mental health needs come with an extensive list of extra requirements that include increased support from parents. This requires a level of intelligence and adaptational skillset that not every person has. It includes the calculated trust of professionals who study mental health for a living. It includes self-education so that there is a balance between textbook and real life.

I understand the fear around labelling and diagnosis if these tools are not in place: there is always a risk that children are removed if they become a danger to themselves and others.

What people do not see is that there are MANY children in the system with extremely complex needs, who ARE still at home because the parents have the skillset needed to provide these children with the level of care that they need.

This includes children who are violent. They are NOT removed if the parents are deemed capable of dealing with it safely.

You may be scared of the outcome for my child, but I am NOT.

If anyone in the world has the ability to help my child, it’s me. I am not scared to ask for professional help.

I can advocate for him.

I can listen if a professional tells me to act differently to support his behavioural needs.

I will not medicate unless absolutely necessary — which would mean he is a danger to himself or others. This is our choice, and we hold no judgment over parents who choose to medicate because it is the right choice for THEIR family.

So although we do not yet have a clear diagnosis I can say this:

I am not scared of a label. A label helps myself and others understand his unique set of needs.

My child is a healthy normal child most of the time, but if he DOES have a medical condition, I want to intervene early with a strong support network.

I am not scared of being told that we need to adapt our parenting skills to support him further. Maybe we are just doing it all wrong, but I don’t think so.

I do not regret calling the doctor when my child expressed fear around a set of symptoms that I do not fully understand.

I admit I had a moment of fear, passing over some control to the medical industry when my own passion and my business is holistic health based. I advocate for natural methods FIRST, but never would I advocate ignoring Western Medicine. These two systems work best when they work in tandem.

I am fully aware that I am now walking a path that no one else fully understands…but I guess in way, we all are anyway.

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