Recently it was “dress to express” day at school whereby children’s mental health earns a day on our calendar, and we reflect on those challenges that children often face. You can have all the awareness days in the world but without the actual ability to help, drive change, and receive vital services - what is the point?
It came at an apt time really because after years of refusing sedatives for Amy to help ease her violent and distressed outbursts - I finally admitted defeat.
It’s heart-breaking to watch and nothing we do seems to calm these events
Amy often gets so angry (especially around bedtime and through the night) and will rip out her hair, scratch her face, kick the bed doors loudly and scream. She managed once to knock off her big toenail. It’s heart-breaking to watch and nothing we do seems to calm these events. It sometimes happens on days out where she can’t cope with the activity or environment too. Not only is it hard for her, but it can also be really isolating for us. We also can’t leave the house with her after a certain time too.
So, we finally agreed to try the medication and use it as sparingly as we can. It’s hard to strike a balance because no I don’t want to “switch her off”, equally is it fair for her to be experiencing this level of distress?
I was scrolling through twitter late at night when I stumbled upon the page of someone who described themself as severely physically disabled. They had been having a hard time accessing support they needed for so many things. For sore limbs from muscle spasticity, for reflux, which was causing them pain, and for counselling whereby the counsellor would have an understanding of what this person encounters daily.
Mental health challenges afflict so many people, and we can talk more openly about it now
This is truly something to be celebrated. But I feel that surrounding disability there is still a stigma.
It has been mentioned by professionals in the past that Amy’s “angry outbursts”, self-injurious behaviours and attacking of those around her relate to communication frustration.
She is non-verbal. We are still working hard on communication but it’s proving more difficult that we had hoped.
It must be so infuriating wanting to articulate something to someone who allegedly knows you best… and they just don’t get it.
With learning disabilities, chronic pain, communication issues, gross and fine motor impairments it is no wonder she often lashes out.
I have searched endlessly for solutions
It would be great for her to be able to access talking therapy, or counselling but I know that this is never going to be an option.
I had hoped hard that eye gaze technology would have been a success for her and that she would be able to communicate with us.
We use symbols on cards but sometimes she won’t engage or is very inconsistent with them. Though she is nonverbal she communicates excellently in letting us know what she wants i.e., iPad, music, change in position, change of pad etc. But further than this we are struggling.
Amy is now a big little girl… the hits and kicks are harder, moving her to safety is harder. Some days she seems deflated, drowsy, disengaged from us. I wonder if this is due to seizure activity, is she tired, or is she feeling depressed?
If she could talk, what would she say? Is she happy?
In the various cerebral palsy groups, I am part of, I often see parents of verbal children mention that their child is feeling anxious, sad, different etc.
I see them trying to find ways to help their child understand their value and worth and that being different is okay. I see parents feverishly trying to find ways to reduce the physical aches and pains that come with the diagnosis.
It’s so difficult for everyone and I always read the responses with interest as we are yet to find something that we think will help. If she could talk, what would she say? Is she happy? On social media she appears to be the happiest child in the land, but the reality is different.
Our paediatrician has done a referral to HYMs (healthy young minds) which I am informed is a massively underfunded and overcrowded service.
It just shows how many children are struggling and need more support. The doctor isn’t sure what they can offer us other than medication, and we have been offered a few that come under the antipsychotic category.
I have declined thus far as she has so many medications and I want to try and minimize them. We don’t really know how all the meds interact with each other; I don’t want to make things worse. I've had meetings where professionals have mentioned that she may be suffering with anxiety or depression. It has been brought up a lot.
Hobbies and normality are fundamental in aiding good mental health
I found a list online that said, “speech and language therapy, educational assistance, support groups, physiotherapy, medication, adaptive sports program, behavioural therapy, social work, psychotherapy”. Seeing this list confirmed to me that we are presently doing all we can to pursue as best possible mental health for Amy. I am hoping this year to try adaptive sports (boccia) and wheelchair bike riding activities with her, and for us to have some lovely family holidays because I sometimes think hobbies and normality are fundamental in aiding good mental health.
I often look at Amy, admiring her beautiful little face, and I wonder "what is she thinking?". So many times, I have seen her watch children running and playing at the park and I wonder "does this upset her? or is she just interested?". I have often felt an "outsider" or "different", I get a bit of imposter syndrome too when in groups and I think "ha, look at you trying to fit in and look normal!"
So, I do wonder, is she aware of the differences? She certainly gets frustrated fighting against her own body. I find myself too often comparing her childhood to mine. It couldn't be more different. I wanted her to have what I had. But it's just different. I wonder how much of my anxieties I project onto her.
So far, I have mainly learned:
- Do what she loves. Amy has us singing pretty much constantly. When we have done enough singing, the iPad and videos come on.
- Try to ignore the onlookers. The situation is only made harder by people stopping to stare. It adds to our anxiety which adds to hers.
- Ignore all judgment. These people likely have no idea what our life is like. We are just doing what we need to do. If an iPad is needed at a zoo to help her be able to focus on her surroundings, then so be it. If we could have the iPad switched off, we would!
- Be patient. Obviously, we aren’t saints. There are days where my patience wavers and I just really wish things could be calm. But I’d say we do a remarkable job of keeping calm to help her feel safe. I will always stay by her side or give space when needed.
- Ask anyway. I ask Amy constantly how she is. Tell her how much we love her. I tell her how valued, important, and amazing she is. Amy has proven so many times that she understands way more than some people give her credit for.
- Get out and about. Get some fresh air, find those accessible places, and make memories together.
- Lower expectations. Don’t expect to go to a musical therapy, or disco etc and for it to go swimmingly. Go prepared, accept when it isn’t working and smile through it. You can only do your best.
- Look after yourself. If you don’t look after yourself, how can you look after someone else?
Is there anything you would add to the list?