When Special Needs Parents Are Told: ‘We don’t have money for that!’

Earlier this year my son became very ill. A routine MRI carried out under general anaesthetic found a large area of concern in the right frontal lobe of his brain. He underwent 6 hours of brain surgery where a segment of his brain was removed for biopsy and it took months for him to recover. Add in the fact he has severe learning difficulties, severe autism, epilepsy, a progressive genetic condition and he’s not able to speak and might you understand why I was extremely concerned about his return to school last week.

It wasn’t until two days before school was due to start back that I finally heard about his transport arrangements, and when I did I immediately felt sick. I had just spent three months caring for him since his operation, and over ten years caring for him before that ,and I knew instantly that the arrangements to get my child to school were unsafe and put him, and others, in danger. Yet despite numerous calls, emails and letters, plus the backing of medical professionals and social work later and I was faced with the decision to either put my son in that multi occupancy vehicle or keep him home. Taking him myself isn’t an option due to distance, the fact I have another child and the fact it is logistically impossible to be in two places at once.

Why were my son’s medical, development and mental health needs ignored in favour of the cheapest option? Because, as I was told numerous times when I requested single occupancy transport,: ‘We don’t have money for that!’

Now I get that my son is costly. In the last six months alone he has had thousands of pounds of medical treatment free on the NHS including scans, tests, appointments, consultations and brain surgery. He’s had a hospital stay with twenty four hour nursing staff. Everyday he has very expensive anticonvulsant medication just to keep his epilepsy under control. He was issued a wheelchair free of charge and he receives incontinence products delivered to the home at no cost. No-one ever once said they couldn’t treat his brain mass that was making him ill because ‘we don’t have the money for that!’ No-one has ever said he can’t see his neurologist or neurosurgeon or any other specialist due to cost.

Yet all his medical and communication needs can be ignored in favour of the cheapest bid when it comes to school transport?

Then there is trying to ensure he has an assistant with him at all times in the school day. Apparently my local authority don’t allocate named one on one staff preferring the cheaper option of general classroom assistants to help wherever the schools feel necessary. Why? Because it’s best for the children, ensures every child’s needs are met and gives them the best chance of success while being kept safe? No! Because it’s the cheaper option.

Despite being non verbal at ten my son hasn’t received any input from speech and language for years. He’s never been assessed or offered an alternative communication device that could help ease his frustrations. Why? Because of lack of money!

I list so many more times when I have been told that what my child needs in order to be safe, nurtured, included, and able to achieve isn’t possible…because ‘we don’t have her money for that!’

I haven’t ever met one parent of a special needs child (or children) who hasn’t been told at one point or other ‘we don’t have money for that’ wether it’s respite, educational support, sibling support, mental health support or adaptation to their house.

‘Lack of funds’ is the single most given reason why families with special needs children struggle. It’s what affects the mental health of parents (and children) the most. It’s what deprives millions of opportunities, vital support and independence.

Yes there isn’t an infinite amount of money in the world but should the most vulnerable in society be the ones to suffer?

When you tell me ‘we don’t have he money for that’ what you are really saying is my child doesn’t matter. His safety doesn’t matter;his welfare doesn’t matter; his life doesn’t matter. You are saying society doesn’t care.

Everyone has potential. Every life matters. Should there be a cost attached to vital support? What if that was your child put at risk?

What if someone said to you that you didn’t matter, you were not worth investing in, you should just accept what is given wether it meets your needs or not? Would you accept second best because someone said ‘we don’t have money for that’?

There are too many children with needs being put in school transport that is unsuitable, unsafe and transporting them for way over the government guidelines of time just because their parents are told there is no money for any other option.

There are too many children struggling in education, having to be withdrawn because of inadequate provision and placed in mainstream when it isn’t right all because of lack of funds.

There are too many families denied vital respite putting lives at risk all because of lack of money.

There are too many children and young people denied access to support such as speech and language, mental health workers or occupational health all because of cutbacks.

Our children matter. Our young people matter.

You can’t put a cost on the importance of a life.

My child deserves so much more than your glib and thoughtless comment of ‘we don’t have money for that!’

Your child deserves better too.

I Will Never Walk My Child To School

I’ll never walk my child to school

I get to buy him uniform. I get to pack him snacks for playtime and fill a bottle of fresh water for him. I get to buy him a nice warm winter coat, new footwear, and a nice new bag.

But I’ll never walk my child to school.

I’ll never get to wave to him as he joins his line for the first time. I’ll never get to say good morning to his friends, kiss him goodbye at the gate, exchange pleasantries with other parents or pop into the office with his forgotten pencil case.

I wish I could walk my child to school.

It’s not the biggest thing to want. It’s not expensive or overly time consuming or rare to see. I just want to hold his hand or walk beside him in the morning and at 3 o’clock like other parents get to do with their children.

I never had it at the nursery stage but somehow that didn’t seem quite as bad. He’ll grow up never seeing my face just before he enters school to be away from me for six hours. Whatever his day was like I won’t ever be the smile that greets him or the hand that takes his as he leaves school behind for another day.

He’s still young and he needs me. I should be walking him to school.

There’s a wonderful school so close to us. Not too big, not too small, with such a friendly, welcoming ethos. I should have been buying burgundy jumpers to match his sister and seeing him laugh with friends in the school playground minutes from my house. When I sit in the garden listening to the children in my daughter’s school play outside I close my eyes and dream that my son is there too, kicking a ball about, chatting to friends, sharing life.

Instead I say my goodbyes at the front gate handing my son over to strangers who change every academic year. I strap him in a car seat, kiss his tender little cheek and tell him I love him. He never waves back. He rarely even looks at me.

I long to walk him to school.

We would splash in puddles. We would laugh when the wind blows our umbrellas inside out. I would listen intently as he told me about his day, his lessons, and who was star of the week. He would nag me to leave him at the gate instead of the line as he got older and we would get excited in winter walking in snow and making footprints. I know this because I get to do all of that, and more, with his sister.

Walking your child to school is so much more than just a menial daily chore. It’s bonding with your child, giving them priceless security and routine, its allowing your child uninterrupted special time to de stress and transition from school to home. It’s being familiar with their school, knowing the office staff by name,smiling at their teacher and having a chance to sort things out quickly because you are right there where you should be.

Is it wrong that I want that for my son too?

To know he has arrived safely, to walk home myself feeling at peace, to know where he is and that he is safe, to feel comfortable with the people who are looking after him and teaching him.

I’ll never walk my child to school and that simple, everyday loss is so hard to deal with sometimes.

My son has complex needs so has to go by transport to school many miles from home. I correspond with the school via short sentences in a diary. I don’t know what door my child enters the school or exits or if he even lines up outside. I don’t get to see his playground, his friends, or the staff. I have to assume he has arrived safely and he is well even when the weather is awful or I hear of accidents on the route. I can’t pop in with a forgotten snack or a form and even when I call them my voice or name isn’t familiar.

I wish it was different but it’s not.

Please don’t take it for granted when you walk your child to school. Some parents, like me, will never know that simple joy.

Today is just another morning that I never walked my child to school.