Diagnosis Story

Most of us resist labels. In an individualistic society we dislike being boxed in, classified with groups of other humans as if our stories are just the same as everyone else’s. Labels can restrict, altering others’ perceptions of us.

ADHD means ‘hyperactive’, ‘troublesome’, ‘difficult’.

Autism means ‘odd’, ‘low intelligence’, and ‘socially awkward’.

I think of the labels I live with. ‘Stay-at-home-mum’ for some means ‘lazy’. ‘Depression’ can mean ‘weak’, ’emotional’, and again, ‘lazy’.

Labels are freighted with associations, and this is why we fear them, because not all of those associations apply to the individual who wears the label.

Yet labels can also bring freedom. Freedom to be ourselves. Rather than always having to hide the things we struggle with, labels allow us some grace. Someone can explain that ADHD sometimes means they blurt out an inappropriate response. “I’m working on it, I don’t mean it personally. Please let me be me, and don’t reject me.”

I feared labelling my son. I did not want people to treat him differently, either by excusing behaviour or assuming negative things about him before getting to know him. But slowly we began to realise that the issues we hoped he would grow out of were not going away, in fact they were getting bigger, and having more of an impact on his life as he got older.

They were also having a greater impact on our family life. His anger is an onslaught, and rises with very little provocation. Far less unpleasant, but just as draining, is his inability to not interrupt, or to wait when he wants something.

Also troubling is the difficulties he has relating to his peers. He shows a noticeable lag in emotional development, and went through a stage of being called ‘annoying’ by all his friends. That seems to have passed, but he still struggles to get involved in games where his rules and ideas are not listened to. He wants control, and gets upset when friends won’t listen.

With high school approaching in September, we realised that he would need help. Homework demands will increase, and at the moment he has meltdowns over a single sheet of maths.

It is intensely frustrating to me that because he shows no educational lag, no one would take us seriously for a long time. If anything he has high intelligence, and is ahead of many of his peers in the classroom. For this reason, the professionals are ruling out ADHD at this moment. I’m not claiming to know more than they do about neurodevelopmental science. But I am an expert on my son. I have observed him, and lived with him, for ten years. I love him deeply. And the autism spectrum disorder which they are leaning towards just doesn’t fit, from my perspective.

Admittedly, he has some traits that flag up concerns – but these all remain in the social development side, and can be exhibited by people with ADHD also.

I’m finding it difficult to convey in brief appointments the feelings and instincts I have. It seems to me that the USA are much further ahead of the UK in terms of research and understanding of these issues, and have broken down ADHD into more streams. Here in the UK we recognise only three. One Dr in the US identifies seven types of ADHD.

Right now I know we have to go through the process. I have to pray, and trust, and wait for the professionals to check every avenue, even if they only rule things out in the end.

But it is my son, and I love him deeply, and I am afraid of them getting it wrong. I am anxious for him. I am anxious for myself, because of the freight of these labels. Autism (even mild) feels terrifying. What will it mean for his future? Will he be employable with that label? Even if it is only mild, and he manages to get to university and gain a first in science? Will it frighten people?

Even ADHD … what will it mean for his long-term relationships? Will anyone want to commit their lives to someone so difficult? So challenging? How will he be with his children? Will he be intensely involved one minute, then distant and engrossed in his work the next?

I know that worrying about the future is unhelpful. Each day has enough trouble in it. I tell my soul to listen to Jesus on this one. The future is in his hands.

But the questions drift like ghosts in the back of my mind. I don’t fully trust the professionals. I feel that the forms we fill in give only a partial picture. And how can a family’s life be condensed into an hour-long appointment?

The educational psychologist will evaluate him in school next week. And right now all I can do is gather information, evidence for what I believe, in the hope that someone will listen.

Off the Map

I promised to explain why I’ve been so quiet for so long.

My husband has been having some issues with his thyroid – a condition called Grave’s Disease. His thyroid goes into overdrive, and it has a profound effect on his whole body. He becomes agitated, irritable, and his heart pounds and races. He can’t sleep, and this makes it hard for him to get out of bed and to be involved in family life.

It kicked off about two years ago now, and tablets brought his thyroid under control. But now it’s happened again, and the doctors want to do a more permanent treatment.

While all this was happening, my husband kept injuring his back. He would be in excruciating pain, and even less able to help out with the kids and family life.

Layered over these issues, we have come to the slow and painful conclusion that Son#1 has ADHD. We’re going through the diagnosis process, which could take a whole blog of it’s own to describe, but from what we have read we are fairly certain that this is what the problem is.

Son#1 has been particularly difficult for many years, but his aggression and persistence seem to be intensifying. Having an explanation helps at one level, but I’ve also been trying to process what on earth this will mean for our family, and for Son#1 in particular. How is he going to cope with high school (starting in September 2019)? What will his life look like when he is fourteen, eighteen, twenty? Will he settle down, or will this be something that dogs him his entire life, limiting him, and damaging relationships?

My mind runs in circles as I go over these issues. At one level it is such a relief to have an explanation (other than that we are terrible parents) for our son’s difficult behaviour, and apparent inability to learn simple rules and manage his own emotions. At another level, finding a diagnosis brought an end to my hope that he was just a difficult kid and would outgrow his behaviour. ADHD seems to be a very unpredictable animal – in some people it’s long-term effects are devastating. In others, it adds some strain to daily life but not enough to prevent someone from holding down a steady job and caring for a family.

I feel like I am just emerging from a black hole, or a vicious storm. I’ve been very depressed for quite a few months, just trying to process everything that has happened to us. And through it all, when we have reached out for support from the church we have been turned away.

I’ve shed a lot of tears. I went through a patch of being unable to pray. It felt as though God had just closed the door. I tried very hard to listen to my head and to believe the promises of the Bible, but my overwhelming sense was of being utterly alone.

If you are living in a family affected by ADHD I hope I can offer you a story to relate to so you feel less alone. I have found little online for Christians living with ADHD, particularly for the partner/parent without ADHD.

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This feels like a very muddled blog, and probably isn’t all that clear. I’m hoping to break the issues down over the next few weeks and write them out one by one, providing a clear resource. But right now I’m just relating where we are. I feel a bit like a shipwrecked traveler, washed up on a strange beach. I have no bearings. We are off the map in terms of marriage and parenting, dealing with issues no self-help guide really touches on. Perhaps I can provide some direction to those who follow, to guide you on safer paths than the ones I have trodden.