We were in the park yesterday, the sun had come out after a few days drizzle and the three boys headed out in their new Spiderman costumes they saved up their pocket money to buy. By the time I caught up with them, I had picked up a pair of one of my sons trainers, discarded by the gates into the park. Spiderman doesn’t wear shoes and he wanted to be authentic. I knew that this would spell disaster.
He was screaming at me to clean his feet, to get the mud off his new costume. I explained that a washing machine would be needed for the job but not to worry, I would do this when we got home. Inside my heart was pounding, knowing that this would not be enough of a solution but externally I was oozing calm. This has taken me a long time to get here, to maintain calm when you are being screamed at.
He started to lash out, trying to kick me and hit me. This is what happens when he gets upset and can’t manage his emotions. I had to physically hold him down on the roundabout to prevent myself from getting a foot or hand in the face. All the while, he was calling me names, because it was my fault obviously.
All rational thinking goes out of the window for him when these things happen, a red mist descends and no matter what I try to do to alleviate the situation, there are many times when it simply has to play out.
Here is where it gets tricky.
“What’s wrong with him?” Parents have asked me.
There is nothing “wrong” with him, he just cannot manage his emotions yet. He finds situations that to others would be resolved with rational thinking and negotiation a major problem, a disaster. His senses are heightened when others barely register what is going on.
Most kids general like him. He is funny, plays the joker, has an incredible imagination, is kind and wants to fit in. He knows that he doesn’t and asks why he is bad.
These are words used by adults with him. “Make a good choice, not a bad one.” He takes things so literally that he thinks that if his choice isn’t a sensible one then it makes him bad.
I have seen adults look in horror as he has been carried into class screaming, making me head home and sob. As if it’s not hard enough managing a child who is struggling with their emotions, you then have to deal with people staring at you like he’s a bad egg that they don’t want near their children.
Childcare leaders at after school and kids clubs have asked for him not to come back because he is “difficult” and “doesn’t sit down all the time.”
I get it, believe me I do. He can be disruptive but generally this is in a new situation and once he knows what will happen in a session the anxiety that he feels goes away and he calms down but he rarely gets a chance for a second session.
How is this child going to have a chance in life if barriers are being put in his way the whole time. Will his self esteem keep going down when all he is striving for is to “stay off red” at school, rather than being celebrated for the wonderful things he does do?
Three years; that’s how long ago it is since I asked the health visitor for help and support. There were no big issues back then but they were beginning and I felt that if we got some support we could help him to manage things as he grew.
I had no idea how hard it would be. Nine months we waited to be seen by a consultant and this was after six months of persuading the GP that it was required.
When we got there, the lady chatted to him, barely listened to us and discharged him.
“He can maintain eye contact, he’s bright. He is playing you for a fool. Maybe, he has ADHD but unless you want to medicate him and take away his creativity then get him into sport.”
Yes, thanks for that. Here we are again three years later, me fighting for my boy, trying to get him help and support. His teacher is incredible, he is very lucky this year but others won’t (and aren’t) as tolerant of him at school. They see him as a naughty boy, causing trouble. They don’t understand that each meltdown is a result of extreme anxiety, caused by transition between activities, by the fear of being laughed at, by the background noises that are too loud for him.
This could have been prevented or at least reduced had people listened to me along the way. Me, his mother who knows him better than everyone else. I am an expert in my boys and I know that this one needs some support.
I am permanently on high alert, never quite sure when the next eruption will be. There will be one and that is almost every day. It is tiring and upsetting. I feel like we are letting him down all the time but not helping him more.
I have endured a ten week parenting course, a lady coming to my house to help me parent him better. She left feeling like a failure. This is because his behaviour did not improve. We simply had to tick the box for the NHS, to prove that it wasn’t us causing the problems. That money and those resources could have been used elsewhere and not wasted on twenty hours of talking.
This is not my parenting, this is my child and he needs an expert to help him. No matter how much I read up, I am not an expert in child psychology.
Before Easter, the consultant reviewing his latest referral rang me. They have had three team meetings at the hospital to decide whether to see him. I have filled in twenty page questionnaires about his behaviour and personality. Does he sleep? Can he make friends? What triggers his meltdowns? Do certain fabrics irritate him? Do coloured foods wind him up?
The consultant is worried about my expectations. I do not care about a diagnosis at this stage, a label, whatever it is. What we need is understanding. We need an expert to tell us when he is having a sensory meltdown and when he is just being a kid playing up, because he should not be told off or punished for something out of his control and this is what is happening, time and time again.
It turns out that there are thousands of parents in a similar position to me. Fighting for their child to be seen. Being turned away from groups, tutted by other parents, their children labelled and judged as naughty and troublesome. I am in groups with many people who are so tired at the end of the day they are in bed by 8pm, exhausted by the mental challenges of the day. Parents split up, relationships are strained and other children in the family are affected by the attention being constantly drawn away from them.
I am taking care of myself. This is one of the only things I have control over. I have been doing yoga, going to bed early, not drinking, eating well. I have ditched guilt about doing things for me. This week I am going to a Self-Care Sunday in Brighton run by some fabulous people, we are doing yoga and learning a 15 minutes sequence to take home, discussing food and mood and eating amazing food by Gems Wholesome Kitchen. We will learn stretches to help release anxiety and tension. This is something I struggle with and I cannot wait. Above all I can’t wait to spend a day with funny, lovely people and switch off. The key to survival with a sensory child is to surround yourself with accepting people, with friends who adore your boy, who give you a rest when he is having a meltdown by jumping in to distract him and negotiate with him. To those who will give you a hug and never judge.
The next time you see a child screaming, kicking, calling people names remember that these are kids and try not to judge them. I have done it. These are the kids you don’t want your child to become friends with incase it rubs off on them. These are the kids you dread being in the class with your child because they can be disruptive. But this is exactly it, they are kids, remember that. Just kids. They need as much love and support around them as possible to help them in this tricky journey called life.