Why are my legs hurting?

My son is so tuned into his body, it really is amazing. I say I think its amazing but actually that’s wrong of me. It must irritate him that he feels everything, more than the average person. Well it does irritate him that he feels things so strongly.

For a long time he told me his hearing was “bad” and I’m ashamed to say for a while I didn’t quite believe him. I thought he was using it as an excuse to ignore us all. And then I thought he just needed longer to process what people were saying to him so I never did anything about it.  He was insistent though and eventually I took him to the doctors and said he is saying he can’t hear. Even the doctor looked at me as though to say well he’s only 5…you are the grown up what do you think? The doctor checked his ears and could see nothing obvious and the doctor sat back in her chair and asked what I would like to happen so I asked for a hearing test. And so she referred him, no questions asked, simple as that.  

Simple. As. That.

But hearing is something physical. And this carries so much more weight than anything mental. From our experience, asking to be referred on to someone for something concerned with mental health is not as simple as that. For those of you who followed my journey you would know I believe my son to be neurodivergent and despite approaching school to refer to my son for a diagnosis this had proved to be extremely difficult.

Extremely.

My son once again had been so clear in what he was struggling with – the school environment, the noise, the amount of people, the uncomfortable chairs, the school dinners, the amount of jobs (and therefore transitions between jobs). All of this was sensory. And it fit in with how my son was tuned into his body. My son was even astute enough to tell school he was only “pretending” at school when there. And when he was at home all the things he had been holding in at school came out. He was angry, distressed, stressed, hysterical and emotional. He HATED school. Or at least the school environment as it is. Yet it seems in order to get a diagnosis of something not physical is not as simple as going to the doctor and telling them what you want and getting referred on just like the hearing test. After speaking to the doctor about the sensory concerns my son had raised and other issues I saw, they said they could refer him but “ideally” it needed to come from school as it would carry more weight. And off I went to school but school said things like..

“He’s fine here”

“I didn’t have him down as one to be autistic, he doesn’t ever flap his hands or put his head in his hands”

“He says its noisy here? Well he is the loudest in the class”

“Pretending….its a long time for him to pretend”

But the truth is school do not have the say so on whether someone is autistic or not. That is the job of a clinical practitioner, in the same vein that there is only an audiologist who can assess hearing. So if you want to be referred to them you should be. Just like the hearing test. School should not hold the power in this. Yes children spend a lot of time at school so it’s a second environment where these issues may present themselves but as my son said he is just pretending at school and there is something known as masking which I am sure school should be aware of. And I can see just how tired he is of pretending at 5 years old. With numerous years of school ahead we need school to be on board with this and the only way to get that is by having a diagnosis and you can’t get a diagnosis without school’s support. Can you see the problem here?!?!

The hearing test came, and I was expecting everything to be fine but lo and behold his hearing measured as low. I was shocked. The audiologist said it was most likely glue ear – a common childhood cause of low hearing but we had to go back in 3 months to have it checked again. So all this time my son had struggled on and when he said he couldn’t hear I should have believed him straight away!!

Not long after this my son started saying his hearing was fine but his eyesight was “bad”. Even after the last time of him being right about his hearing there was a part of me that thought oh he liked the attention of getting out of school to go to a hearing test so may be now he’s saying his eyesight is bad to get out of school and go for a test. But again he was insistent so I booked him in for one….after school I might add so he didn’t get out of school. And we went for the test and as soon as it started I knew his eyesight was bad. He was tilting his head in a weird way when the optician covered up one eye that I didn’t quite understand. He struggled to read some of the letters and then the optician said…..he has astigmatism. This is fairly common and I know its nothing to worry about as such but left untreated it can cause a lazy eye. And I thought he has done it again!! He just knows!! And so he is going to get glasses to try and correct his eyesight, he will go back in June for another hearing test to assess his hearing and hopefully he wont need surgery to fix glue ear or a hearing aid. And I felt relieved I had sorted all this out for him and he was on the road to being able to hear and see properly.

And we plodded along for a few days when my son asked me….

“Why are my legs hurting?”

And instead of thinking straight away of all the simple explanations I immediately feared the worst due to how good he was at picking up on anything that was wrong in his body. Was there something seriously wrong with his leg??? But if you know me in real life you know I’m a very rational person so despite his ingenuity at knowing what was wrong with him previously the rational side of me knew what was wrong with him….

“It’s just growing pains. You will wake up tomorrow and your legs will be longer”

Now my son loves to grow and he made me measure him the next day and of course he had grown by 1 cm so he was happy. But the growing pains must have bothered him because a few days later he asked again and we had the following conversation….

Him: “Why are my legs hurting?”

Me: “Its just growing pains.”

Him: “Will it ever stop hurting?”

Me: “Yes growing pains come and go but once you are grown you wont get them anymore.”

Him: “Well Grandma said she gets growing pains too”

Me: “Well I don’t know why because Grandma doesn’t grow anymore”

And he thought about it for a while and he said….

“No Grandma must have shrinking pains!”

And it made me laugh!!!

And at the time of writing this I had persuaded school to refer my son to CAMHS for a diagnosis. It wasn’t easy and it took numerous meetings and phone calls but eventually we got there. It certainly wasn’t as simple as going to the doctors and asking to be referred. And we still had to wait and see whether the referral would be accepted but it was the first hurdle crossed. My growing pains had stopped a long time ago but my legs are definitely hurting from all these hurdles that I needed to cross…..