I am a problem solver. I see a problem and I work to fix it. I don’t mind failure because without failure we can’t learn and use that knowledge to improve, but at the end of the process I like to see a problem solved.
However, despite my longing to fix the world’s problems like climate change, racism, sexism, homophobia, a worldwide shift to the political far right, the arrogance of the political far left (at least when it comes to their interactions with the right), the general lack of empathy and compassion in the world and the general pain and suffering of those that don’t fall into the category of wealthy, I cannot fix any of these things. I can write a social media post, I can write a blog, I can sign a petition and go on a protest march. I can teach my kids to be the kind of people that I would like to see more of in the world, I can encourage them to learn about the world they live in and see where they can help improve things, but I can’t fix it. This is hard for me to live with and many days it completely overwhelms me; I’ll often take a break from reading the news because it physically hurts to feel so incredibly impotent.
This feeling of inefficacy has really come home to roost over the last few weeks. Rufus is still on the list for CAMHs and it could still be another 6-7 months before we get offered an appointment for an assessment for autism. Rufus’s autism most commonly presents itself with massive amounts of anxiety. Over the last few weeks we’ve had an increasing number of challenging times with him as his anxiety has overflowed and spilled out of him. When this happens it starts with anger. He’ll get into an argument with Nick or myself over something seemingly unimportant and then it escalates to a point where there is barely any logic coming from Rufus, just guttural cries of distress and an inability to form full sentences. His breathing will be erratic and he’ll be crying uncontrollably. By the time he’s at this stage the only thing Nick and I can do is just sit there and wait until Rufus is ready to be comforted. If you want to know something that’s really hard to do, it’s to sit and watch your 8 year old in that much pain and not being able to reach out to him because he’s too far gone to receive that love. All we can do is sit and wait, letting him know that we’re there. Over the past weekend things started to go further when Rufus developed a rash all over his body. I knew immediately that it was a stress induced rash. I have had them at various points in my life but it’s quite a thing to see your own child baring the physical manifestation of all the emotions they have building up inside of them. Over the weekend we did our best to keep him calm and keep his skin cool with the aim to reduce the rash before he returned to school on Monday. However on Sunday we had a further meltdown.
One of the hardest things for Rufus to handle is being criticised in any way, he also struggles with a change in routine. On Sunday night both of these things collided and resulted in tears, anger and general anguish. All of this meant that on Monday morning the rash was still evident around the edges of his face. I informed his teacher about what had happened and as usual she was very sympathetic and ensured me that she would keep a special eye on him throughout the day. When I went to pick him up in the afternoon the rash was over most of his face. Today I’ve sent him to school with not much of a rash but depending on how his day goes, he could come back covered in red splotches and there’s nothing I can do about it.
Last night I spoke with the GP and again, he was very sympathetic but besides telling me to give Rufus antihistamine there is very little he can do for him. We just have to wait for CAMHs.
It has been found that 1 in 6 children between the ages of 6 and 16 have a diagnosable mental health condition. With Government cuts due to austerity, an NHS suffering after Brexit and the continuing COVID disruption means that 34% of those who are actually referred to the NHS services are not actually accepted for assessment and treatment. We were initially turned down and it took Rufus talking about self-harm last year for us to get taken seriously but still we’re waiting to be seen. We could look into going private but if we get a private diagnosis there is no guarantee that we will be able to access ongoing support through the NHS. There are many private practices who will give a diagnoses of autism without using accredited accessors and therefor the diagnosis will not be upheld when to comes to getting support further down the line. Essentially there is nothing we can do to speed the process along.
Not only do I want Rufus to get the help he needs, I want it for myself too. I need to know that I am responding to him in the most effective way, that I am not doing further harm. I want to ensure that I know how best to help him when he makes the transition to high school where he will be a small fish in a much bigger pond and in an environment that is inevitably going to be much more stressful. I want to feel supported and not adrift in an ocean of internet research.
So often I take the approach of being proactive and looking for new ways to do things. Always saying ‘we can do this’, ‘we’re capable’, ‘we’re strong and resourceful’, but actually, right now I am tired, overwhelmed and in need of a good cry.
Sometimes it’s all just too much and I hate it.