It was a familiar feeling yesterday morning as I packed up every bag we had in the house with food, toys, electronic toys, nappies, clothes…. Unlike most people, we can’t simply pop to the nearest shop to pick up something we have forgotten for kiddo. His nappies aren’t available in shops and new toys and distractions often don’t cut it. He needs his comforts. And we were off to London, far far away from our countryside village.
Regular readers will know that this is a journey we were familiar with. In December 2017 we made the trip to several appointments which we had been fortunate enough to source privately. But this one was different. This one was an NHS referral I had been fighting for for nearly 2 years. This one was our chance to speak to a sleep neurologist. A specialist in sleep. And it was our last hope.
As a family over the past 4 years sleep has been horrendous. 2 years ago it became an even worse problem and as a family we were told by professionals that we were suffering chronic sleep deprivation. Yet there was nothing we could do. Suggestions of sleep studies and melatonin were bounced around various hospital consulting rooms, but nothing really made a difference. Many professionals said there was simply nothing they could do, which I just could not get my head around.
I fought for medication. I fought for help from social care. And got no where. Even our GP wrote letters saying my health was severely at risk. Nothing. I’ve honestly never felt like I was banging my head against a brick wall so much in my life. All this and we were managing 2 nights a week of sleep which began with a wake up time of between 4 and 5am. Other nights we were up from 1am. Some times as early as 11.30pm the previous night. This couldn’t go on.
And then a breakthrough, a tiny slither of hope. A name. A name of where someone might be able to help us. But we needed a referral. A referral from the people who believed there was nothing to be done. And they would have to pay.
I won’t bore you with the fight I took on trying to get this referral, because it took months. But then we swapped paediatrician. And we were taken seriously. This time I wasn’t told that sleep couldn’t be that bad because my make up looked too good (I don’t think I will ever get over that one). This time we were listened to. As it turns out the referral had been written a month before, only no one had told us. The referral was inaccurate and did not recognise all of kiddo’s diagnoses. I was not hopeful. So when I got the letter to say we had been accepted I shed a tear. And yesterday we went along on our merry way to London.
We drove part of the way and got the train for the final leg. As the train trundled along I felt my body go rigid. I stared out the window, the world rushing by. My eyes began to fill as I realised this was it. There was no where to go from here. If this man couldn’t help us no one could. And then what would I do? It was only a matter of time before I suffered a severe health breakdown.
We made it to the hospital which was like nothing I had ever seen. It was HUGE. The entrance was nothing short of a shopping centre filled with cafes, clothes shops and convenience stores. As we walked down the long large corridor a nurse sat playing a grand piano. She was clearly on her break and had chosen to bring some cheer and relaxation to the halls as people made their weary way to their appointments or loved ones. This was a hospital where people stayed for a long time.
As I stood outside the door to our department waiting for kiddo and his Dad to arrive in the lift I took a deep breath in. I composed myself and we walked in together. The room was full of families, all with neurological disability. I find these places really hard because they show us the true depth of kiddos disabilities. At home he is just kiddo, we don’t even notice it to be honest. But here he fitted right in. Here he belonged. My throat began to swell.
We were collected and taken down the plainest looking corridor I had ever seen, all designed to help kiddo stay calm and avoid sensory overload. And then we sat. This was it.
We were in the appointment for 2 hours. 2 whole hours this man gave us of his very precious time. And I will be forever grateful for that. We talked through absolutely everything and in a nutshell here’s what happened.
1. The consultant said he had no magic wand to fix all of this. I felt sick.
2. We had done everything absolutely right. This was not down to our parenting and we should never let anyone tell us otherwise. Kiddo’s difficulties were beyond anyone’s parenting abilities. Take note super nanny.
3. So much of the information given to us by professionals had been incorrect. They aren’t given the training they need to help families with sleep and it was a project we was working on currently.
4. He felt that kiddo was actually on the right medication, it was just being used incorrectly.
5. It was also not being used enough.
6. There was no need to feel guilty about using this medicine. We had tried everything we could to prevent it’s use and now we needed help.
7. And this is the big one. He recommended increasing the use of kiddos medicines and changing the combinations of them so that every other night we would all get a nights sleep. At this point I put my head on my husband’s shoulder and shed a tear. Relief was flowing through my veins.
8. We had been failed by social care who clearly didn’t understand the health risks associated with chronic sleep deprivation. This needed to be rectified.
9. Plans needed to be put in place for when the current medication began to fail so we could seamlessly move on to the next one.
10. Kiddo’s anxiety needed to be addressed now. Not in 5 years time, now. A route into CAMHS was necessary, but that’s another blog.
11. He was relieved to hear I was taking anti depressants. He told us how hard our situation was. He made us feel like we had succeeded not failed. He made me feel a worthy parent. Not a time waster or a dramatic mother. But a good one. I choked back another tear.
We left knowing we would be able to sleep every other night. I was walking on air and to be honest couldn’t really process it at first. It had worked. The fighting was worth it. We had won.
Now I move forward. I move to educate families and professionals where I can on where to seek advice and not give up. I move to educate people on the dangers of sleep deprivation. And I hope and pray that our own situation stabilises enough that maybe, just maybe, I can feel like I’m doing more than just surviving each day.
Thanks for reading,