Ordinary Hopes

Seeking carers for your disabled child is like seeking Mary Poppins’ even more magical sibling.

With the added warning that they will get a range of bodily fluids shared, must have enormous patience, must be prepared for extreme challenges at times, must listen to the words your child may not be able to say, or must listen to the same words over and over, which is often a huge challenge that is hard to even imagine! They must also listen to you and follow everything you say as it is what keeps your child physically and emotionally safe.

And did I mention patience?

Parenting any child is hard at times. Having a disabled child who may be at a different developmental stage to most children of the same age can bring particular challenges. Especially as a child gets bigger and stronger, and even more so if their understanding is not typical for their age.

Personal care needs, particularly as your child becomes a teenager and young adult, can be difficult to get met. And, when your child has physical difficulties too, it can be a huge challenge to find the right people.

Professionals come and go all the time. My son has had more people from the disability social work team come and go over the years than most people have had jobs over a lifetime. Several physiotherapists, portage workers, speech therapists and occupational therapists have also come and gone. My son does not find meeting new people easy, especially not in his own home, and he misses those people that he liked, which is why it is important that anyone involved in his daily care must be someone who already cares about him and who would remain in his life even if they no longer worked with him. Because he is a child.

My son’s PAs are all people who knew him before they worked for him –  he is the boss, I am just the person who looks after the business side of employing people. We lost one to university a few years ago but she visits whenever she is in Cornwall and she visited him twice when he was in hospital at Bristol last year, so we seem to be getting it right.

I also like to employ people that I already know well, know their family, how well they treat their pets, what their hobbies and interests are etc. Because I am trusting them with my child.

• I  need to know that they will be patient with him, no matter what he does or whether it is the fiftieth time he has requested the impossible.
• If they are doing something and he expresses dislike or pain, I need to know that they will stop instantly.
• I need to know that they will not try to blame him should they not get something right.
• I need to be sure that they will not ever say anything which might make him feel that he is a burden or problem in any way.
• I need to be sure that they will not be negative in front of him as he feels the emotions of others  very deeply. Comments about being scared, or about it being cold, busy etc can all put him off something in an instant.
• I need to know that they will be able to remember all the body parts which need support during a transfer and that they will watch his face for subtle signs of pain.
• I need to know that they will practise moving his powered chair empty before they try to manoeuvre it with him in it and that they understand that it is vital that Adam has confidence in them moving it if he needs them to.
• I need to be sure that they have mastered securing his wheelchair into the car without him in it before they would try to do it with him using it and that they will check and double check every time they do it.
• I need them to be able to downplay fear or it will panic him for long after the event.
• I need to be sure that they will not “wing it” when it comes to his safety or his needs.

Because if they get it wrong, it might put him at risk of harm and will affect his confidence in the long term.

But, for families, finding these magical people is really hard. They might only be needed for a few hours at a time and those hours might be at unsociable times, which is another barrier to finding the right people. It took me years to build my son’s team and I was terrified that the offer of funding via Direct Payments would be withdrawn, which happens all the time to people.

I currently have several friends telling me that they are at risk of losing the agreed funding for their child’s care, because they haven’t been able to find carers for the role. One has a child in hospital at the moment, with complex changes happening all the time, so she can’t easily find a carer, let alone have someone else learn the ropes whilst her child is so vulnerable. He is a child, first and foremost.

Sadly, those in charge of the purse strings often have no idea of the complexities, nor of the trust needed, nor of the deep emotional struggle of knowing that you need carers in order to meet your child’s needs. As parents, we feel that we should be able to meet all of our child’s needs by ourselves, but for many parents of disabled child it really isn’t possible.

I felt guilty for a long time about needing help to meet all of my son’s needs. But now, instead of seeing it as me needing help, I see it as my child having the best opportunities to be successful and independent. At school he had 2 staff provided at all times just for him, at home his needs do not lessen!

One person can only do so much for another. And, by having help, I now get to be the best mum I can be, and the mum that he needs me to be.

If you are employed as a carer, PA, support worker (or whatever other title you use) please know that you are valued, loved and treasured by the whole family. And that you make a huge difference to them all.

I know that my son’s PAs already know that, and that they feel fortunate to be part of my son’s world, so I know that I have chosen well.

Don’t let anyone rush you into finding carers. Take your time and find the people who will be what your child needs. Because, not only do they have to do and be everything already mentioned, they also have to enable your child to get on with the joys of childhood.

Don’t be rushed.

Don’t let anyone tell you that you are being “too picky”.

Good people are out there, and, in my experience, they are often closer than you realise.

My top tip, ask among your friends as to whether anyone is interested. Sometimes friends don’t like to offer because they don’t think they have the right skills.

But you can teach the skills to anyone who has the right attitude.