Yesterday my husband and I talked into the late hours. Our words were full of honesty, harsh truths and acceptance. And there were tears (from me). Oh so many tears. What were we discussing? Our fight with the NHS. Our long, heartfelt and determined fight with the NHS.
Yesterday our “relationship” with a number of medical professionals involved with our family came to an abrupt end. Why? Because I reached a realisation. All these months (years) of shouting the loudest, all the hours of phone calls, any drive that I had to push forward our campaign to get the correct and appropriate help for Kiddo, it had all finally taken its toll. And what’s more, it had stopped achieving anything.
The final straw yesterday was receiving a communication from one professional, via another professional, that we should immediately cease all kiddo’s sleep medication. Why? Because our recent choices of how to help our child sleep were apparently the reason for his erratic daytime behaviour. Now this isn’t actually possible as the reason we researched and sought answer to kiddos sleep problem in the first place was because his behaviour during the day was so erratic. And it all started when he stopped sleeping.
So you can imagine my reaction when an individual made a decision to suspend all use of medication without talking to us, without returning a single message, without listening to other professionals who had seen our problems first hand and without listening to any of our concerns surrounding the decision. It was arrogance at the highest level. And I was devastated. Actually, I was terrified.
I couldn’t believe that my husband and I had been forced into a position where we had absolutely no choice but to search for the options ourselves because one individual wouldn’t give us the time of day. It’s as though we were not worthy. Now this is isn’t the first time this has happened to us, but in the past I have somehow made people listen, see the world through my eyes and experience the turmoil we have been facing for the last few months. This time, I just couldn’t see how I could get through. I had tried every avenue possible with no success, and I was tired. So very very tired.
My eyes were dry from all the crying. My throat was sore from all the shouting. My heart ached from the desperation I had poured into seeking a solution. I just wanted some help to allow us to get through the day without purely surviving. I longed to live my life, and not just survive it.
Last night we sat down after kiddo had gone to bed and the realisation hit of just what all this fighting had done to us. One thing was certain, we couldn’t go on like this.
I spoke the words first and my husband followed in agreement with such relief.
“I think we should stop fighting now. It’s killing me”. And it is. Physically and mentally I am on a knife edge.
But there are still many aspects of kiddos care that we need help with. And so we decided that even if we had to max out every credit card we owned, we would get kiddo the care he needed through a private route. Only then can I rest easy as a Mum. Only then will I know that I tried absolutely everything in my power to give my child the best start in life, the best hope he could have of experiencing a quality of life.
And so last night “the fight” officially came to an end. And I felt like a million tonne weight had been lifted off my shoulders. Because it isn’t kiddo’s autism that drags me down and makes life feel like an endless struggle through swamp like conditions, it’s proving to others that you are worthy of their time. That you exist. That your family’s situation is bad enough to warrant even a tiny bit of balanced consideration from someone else.
Autism is not definable by a single test. It’s not a condition which can be diagnosed following a simple blood sample. It takes long complex assessments, and most important of all, trust. A trust from the professionals that parents are giving a truthful and honest picture. A trust from parents that professionals are listening, truly listening, to your worries, your fears and your concerns. We had that trust when kiddo was diagnosed. It was the most supported I had ever felt. We still have it today with one, maybe two individuals. But overall, it’s perished. From those with the power, it’s gone. The relationship has crumbled and the trust has broken down. And I honestly can’t see a way back.
Now I just want to let you all know that fighting in the way we have for the past couple of years can absolutely get you where you want to go. Without it, we would never have had kiddo’s diagnosis by now. Fighting can truly help your family, until it doesn’t. At that point you have to ask yourself what you are looking for. If fighting is what is needed then you can be sure, the entire autism community has your back. You go out there and get what you want. But don’t destroy your own life in the process. Don’t let “the fight” place a strain on your marriage. I’m so lucky that I have my soul mate standing by my side every step of the way. And one of the reasons our search for medical help has taken a change in direction is because I value our relationship too much to risk it anymore.
So we will start down our new path, seeking new advice and expertise for one final time. After that, our family life returns. I will spend my time keeping the family home in check, enjoying stress free time with the kiddo, until he starts school. Then (so I am told) our lives will become unrecognisable. Regular respite. Expertise on hand at the school. A whole world of opportunity opened up.
And that’s where we head now. For the final fight has been and gone, and my days of anger, frustration and despair are behind me. Sure we may discover new therapies and help from the private sector. But at least I won’t have to shout from the top of my lungs to even get on a waiting list. For the first time in 3 years, I can now see the finishing line.
Thanks for reading,