We parents of disabled children have endless struggles and battles with professionals regarding services, or at least it feels that way. Sometimes you feel like they think you’re difficult or emotional (well, they probably do). We also have some wonderful people in our lives, who really make the journey easier and these people probably don’t realise how much we appreciate them.

It’s no secret that cuts to the NHS and Social Care mean resources are limited. It’s apparent that some professionals see you and your child as a drain on these limited funds and make you feel you’re too demanding. Then there are others who recognise those difficulties but also recognise your child is the one missing out not them. They apologise that they can’t visit more often, or get all the right equipment, or that they can’t do so quickly enough. They’ll fight on your behalf if they have to. They empathise and show a human side. Many others just fall in the middle bracket and are “OK”, rather than making the parents feel like they’re being awkward or making them fight. We appreciate them too but they don’t stand out like those on the other end of the spectrum. These special professionals go above and beyond but act like they’re just doing their job, as though everyone else would do the same. I know they don’t though and these professionals make life so much easier and are a joy to deal with. We have two like this that we deal with and they’ve been especially helpful this week, as I know they’re going to support me to try and get the ideal equipment for my son after a forthcoming operation. Knowing I have them doing this for me has lifted a huge weight off my mind and I’ve nearly cried with relief. To them, I say a huge thank you.

There are others that we deal with who go beyond the call of duty too. The star in our lives is our son’s respite carer. She is also a health care assistant at the local school that my son now attends. She’s been in our life three years now. She started before he started school, when he was two and a half. My son has complex needs and her role is to provide care for him at home, meeting his care and personal needs. However, given her role at the school and previous role as a teaching assistant, she has gone beyond that. She’s brought ideas for sensory play, even before he was in school. Now she can see what’s done with him at school and can incorporate that in her time with him in the holidays. She also carries out his physiotherapy exercises and ensures she does this to a high standard. Her time with him is devoted to making him happy and aiding his development and not simply the basics of his care needs. It’s apparent that they have a strong bond.

When you place your child in anyone else’s care you have to feel you can trust them. When your child is also extremely vulnerable and non-verbal, that trust is more difficult to achieve. You can’t rely on your child communicating that things aren’t right, that they don’t feel happy with that person, or worse that they’ve been abused or neglected. It’s horrible to feel you don’t feel comfortable with someone caring for your non-verbal child, as you’ve no idea if your mistrust is misplaced or if something bad has happened, or could happen to your child, so it’s wonderful to have someone you have absolute confidence in who you feel gives a higher standard of care than you. We use the time when she is with him to spend time with our daughter and we can do that without feeling guilty that we’re spending time without him. In fact, I feel he has a better time with her as her day is devoted to him!

We’ve had many stressful times over the last few years but we couldn’t have got through them without the brilliant people, especially the carer. I don’t think any of them really know how grateful we are.

Lucy is a mother of two