Caring, parenting, Preparing for Adulthood

Just like the seasons, everything changes

I love autumn because it’s the one season in which we can see things come to life at the same time as things dying. Autumn is the season of mushrooms and aren’t they just the most magical things? It’s also the seasons when many plants give a last flourish of colour before letting us know that they’ve had enough for a while.

Everything changes. All the time. From bad to better, from good to awful sometimes. From the known to the unrecognisable. It’s a simple sentence that has stood me in very good stead as I’ve journeyed through the complicated world of additional needs.

If you are in the depths of despair because your child is ill, or school just can’t see how to help, or a social worker thinks you are causing your teenager’s problems. Things change. They do not stay the same, so the pain you are feeling now will not endure. [It is possible they may get worse for a while, but the change in itself is usually helpful.] In reality, things do get better if only because as human beings we find ways to normalise our lives. It just makes things easier to manage.

A very good friend, Yvonne Newbold talks in her book about managing “ten-minute chunks”. We can all endure for ten minutes, so set your sights and your clock for the next ten minutes. Then breathe and see where you are.

I’m constantly amazed by how much better things can get if we just give them time. In terms of our children, it’s all too easy to be told that children with additional needs tend to need longer to mature, to develop. When your teenager is self-harming or running wild with people who frighten you, those additional years feel far away and unattainable. And yet… time and again those of us with slightly older young people will tell you that change of a kind they never imagined happened.

If the bad can change to good, there’s no shying away from the fact that good can change to bad too! All those interventions you put in place to support your autistic child, that were working so well, suddenly seem to be having no effect. Or sometimes, they are just making things worse! What happened?

What happened is that your child is growing. They are changing and as a result the interventions are not working anymore. Because your child is a wonderful, complicated human, not a robot!!

The same is true for children with physical needs. The physiotherapy programme implemented two months ago may now be causing pain, or be less effective because they’ve had a growth spurt. Which can be really frustrating if you’re not due to see the therapist for a few months! Don’t hesitate in such circumstances to make a phone call or send an email for earlier input.

Sometimes positive change is the scariest…

What if your child stops needing the support that has been critical to their wellbeing and progress?

What if that support has been so effective that your child no longer has the same level of need?

Is that a sign that it’s the right support and is allowing them to progress and thrive? Or has it outlived its usefulness?

Our systems in the UK make it very difficult to access specialist support, and all too easy to lose it. Unfortunately, that means that we parents are terrified to reduce provision that has been hard-fought and has made a positive difference. Even if it’s the right decision.

One of the hardest things to do as a parent carer is to recognise the time to let go. The time to take a risk, a chance, to trust our child and the people who are helping them. Even if a therapist you trust tells you that they no longer need to see that child, every cell in your body may well scream in protest. Personally, I believe that if support were easier to put in place, we parents would not fear this part of the process nearly so much….

It is a risk, to take away some of the scaffolding. In the same way as removing a plaster cast and crutches may result in a fall, removing assistance, or a therapy session may well result in some difficulties. But let’s stick with the broken leg analogy, because it’s easier to understand.

Having a leg in plaster allows broken bones to knit together and mend BUT… that same supportive plaster cast results in muscle wastage. When the plaster comes off, mobility is affected. Your leg will no doubt hurt, as will your hip and your back. Your arms probably hurt because of the crutches you had to use. In many ways, your whole body has been badly affected by the treatment used to deal with the crisis that was your broken bone.

Proper recovery to independence depends on your work. Your willingness to push through the pain, to walk in spite of the wobble. You may need to use crutches a little longer, then graduate to a single stick until finally you walk alone, if slowly. But if you do the work, if you are brave enough to move with the discomfort, you will learn to walk again.

I’m a parent carer. I often fall into the trap of supporting for too long, or too much. Because I love my children and I have seen them struggle and suffer far more than their peers. I often have to remind myself that my goal is for them to live as independently as they can. And that depends on my ability to step away from them, to give them the space of moving with discomfort.

Going Backwards never really works

I’ll leave you with a little thought. One of the fears in considering the reduction of support is that you will have to fight to get it back.

I would suggest that you will never need or want the precise support that you are reducing, because your child is not the child they were a year ago, two years ago. You may well have to advocate for additional support if things don’t go to plan. But it won’t be going backwards. You will be asking for something new, that suits your child’s needs now.

So in reality, you’re not losing anything. Try and be brave. Try and consider that those professionals working with your child have seen progress that suggests a plaster cast can be removed. Maybe it will be replaced with a splint. Maybe the leg will be left bare, and a few days later you will explain to the doctors that something more is needed (a splint, different painkillers). It’s even possible that another plaster cast will be required, but if it is, it will be a different shape, because the leg is not the shape it was when the first one was applied.

Advocacy and disability are not static. We often enter this world as we would start a sprint. Get your head down, run hard, do the work and get to the finish line. But the reality is that parenting a child with additional needs is closer to a marathon and closer still to an endless hike. So we need to learn to be flexible so that we can adapt to ever changing circumstances, and relax into what is a challenging but rewarding life.

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