How a simple call for help almost destroyed me.

Last week I made a phone call. That’s all, just a phone call. I needed some help securing our stair gates to the walls as kiddo is now strong enough to force them off the wall and it leaves him vulnerable to dangerous places where he can access things like knives, medication, cleaning products etc. So it seemed that the sensible thing to do was to phone the occupational therapy duty line and ask for maintenance to come out and fix them to the walls. I didn’t really think anything of it, just that I needed to keep my son safe as he has severe learning disabilities and profound communication problems. I couldn’t just tell him not to go in those rooms, he wouldn’t understand. But from that phone call unfolded the most ridiculous farce. I went from seeking support to essentially being investigated. And here’s why.

The duty OT agreed that it seemed like a simple enough request and went to find out if we could bypass the standard assessment and just get maintenance out. “Fabulous!” I thought. This will be quick and easy. Oh how wrong I was. I received the first of many phone calls.

“How many gates do you have? Who supplied them? Which departments paid for them? Why do you have them?”

Interrogation was an understatement. Then came the second phone call from another department. “How many gates do you have? Which rooms are they on? Who supplied them?” Shit. This had gone from being a simple maintenance phone call to full on investigation surrounding our use of stair gates for a 4 year old with learning disabilities and no awareness of danger whatsoever. I cursed myself for having ever phoned in the first place. Why?? Why did I think asking for help with such a simple task would actually turn out to be simple in itself?! Had I not learnt over the past 2 years that you are scrutinised for every single thing you do for your child? Whether you are seen to be trying to access a service they (supposedly) don’t need right through to how many times a day you wipe their nose? Once again I was under the social care microscope. But why? Because I had asked for help which would cost someone some money. But it didn’t stop there, no sir. Then the real blow hit.

“We might need to talk about whether using these stair gates is depriving kiddo of his freedom and liberty” (or words to that effect).

These words seem to hang in the air of my brain temporarily. Sorry what now? I originally phoned to talk about some help with stair gates YOU provided me with and it’s now being questioned whether I’m stripping my son of his freedom? His liberty? His dignity? I would like to remind you that kiddo is FOUR years old with SEVERE learning difficulties. All documented, all assessed, all well known. All of a sudden my body felt heavy as stone and I was extremely tired. I had been served. I had been served my next fight with the local authority and I just wasn’t prepared, I wasn’t ready. I certainly didn’t have the energy. But I had no choice. It was game on.

I tried to defend my parenting practices over the phone. The person on the phone went away to talk to some other departments. The phone rings again. “There seems to be a difference of opinion in how to progress”. For those of you unfamiliar with social care speak this usually means one of two things.

1. Departments are arguing over who pays for it.

2. Someone somewhere wants this investigated.

In this case, it was both of them. Brilliant. Before I could even take a breath in we had been summoned to a formal team around a child meeting with both departments, kiddo’s school teachers and our learning disability nurse, who thankfully came to support our parenting choices. I was left mortified. I just wanted a handyman, a drill and some screws. Why they hell had I just not paid someone. And then I remembered. We had spent all our money on previously avoiding situations like this one. Ones with endless bureaucracy, where parenting was blamed as a reason for departments not to spend money. It was exhausting. It was denoralising.

In the days before the meeting I was left anxious and worried. No one had clearly told me WHY we were scrutinising this situation. WHY i had to justify myself for what seemed such a small parenting decision for a child that age. I lost sleep and my GP increased my anti depressants as this was the last straw in what i could cope with as a mum looking after her disabled child full time on just a few hours sleep a night. It broke me.

The day of the meeting arrived. As we walked in I apologised to one of the teachers that they were being removed from teaching their class on the last day of term to discussing the use of stair gates in my home. Farce no longer seemed like a suitable word. Circus was probably more appropriate. The meeting began and I presented our reasons for using the stair gates to a room full of people. I was on trial. Again. Judge, jury and executioner sitting in that room staring at me. And then my husband asked the million dollar question, “does anyone here have any concerns about our parenting?”. Silence. So if the answer is no, why are we here?? Why have we been summoned?! And then, only them, were the reasons for the meeting finally explained. In simple terms it was this.

1. It has now become standard practice to examine the use of any equipment which is considered a restraint just to make sure the child is safe and is able to enjoy life without having their dignity, liberty and freedom removed.

2. They are spending public money. Everything must be scrutinised and justified.

Yep. Both reasons that were totally acceptable. BUT, the way it was handled, they way we were summoned and the way not even the professionals who attended knew why we were there was not acceptable. Absolutely not. It was stressful, it was confusing, it was demoralising and it was enough to destroy the last bit of positivity I had in the services that supposedly were there to “support” me. I was broken.

The result of the meeting was that we would receive a full OT assessment for kiddo’s needs. Whilst this was positive, I didn’t feel like it was positive. I felt like I was about to be scrutinised yet again. An application would also be going to the Good Practice committee to get approval for us to use our stair gates and our car seat. Whilst I totally understand why that committee is there and can see very useful benefits, I still do not understand why on earth we are being reviewed when kiddo is only four, an age where many parents of neurotypical children would still use stair gates.

To me this whole scenario has seemed excessive, almost to the point of harassment. It has pushed me further away from the professionals I have to collaborate with (except my LD nurse who quite frankly stopped me from having a breakdown) and will make me question even more whether asking for help is worth the hassle in the future. Perhaps this is what services want, to reduce the need. Or maybe it will one day lead to a disaster that could have been prevented all because a parent couldn’t face the idea of being scrutinised once again.

If you’re a professional reading this, i urge you to consider the effect a lack of communication has on a family. Simply telling them not to worry is not enough. Families are operating on little sleep, high levels of stress and challenges every day that they don’t have the energy to face. They need you. They need your help and support. It was mentioned in our meeting that it has made one of the staff members think about the channels they use to conduct this type of work. I really hope it has because the level of bureaucracy and the misunderstandings caused by this meeting have zapped my energy and, quite frankly, my spark. That little glow of light I had in the pit of my stomach that was there for when kiddo needed it most.

And to anyone who thinks families like mine simply get handed whatever they need, you could not be more wrong.

Thanks for reading,

Danielle

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