Parent Story: Am I Going Mad

“AM I GOING MAD?” 

How many times must I hear the same comments resonating from the mouths of other parents outside my son’s school. “It’s great that the kids are back to normal now, able to get to school and see their friends, all laughing together”. That doesn’t mean anything to me. That is not my life and I just feel a pain in my gut every time I hear it. 

My child has multiple difficulties with his speech and language. The speech therapist says he has several things going on and he’ll have difficulties all of his life. The best they can do is give me exercises and liaise with the school to put in some support for him in class. She told me in a matter-of-fact way. I suppose she thought I was just able to deal with it. 

He hasn’t really improved much even with intense therapy a few years ago and being at school just makes things a whole lot worse. He’s stressed all the time. He doesn’t like going. The other kids seem to ignore him and he’s left on his own a lot. 

He’s a great little boy but he’s only really comfortable being with me and his dad and his little sister. We understand what he’s trying to say and obviously understand him and his needs. He realises that people don’t understand him and that he isn’t able to respond the way other kids do. As his little sister continues to develop her language skills, he notices it and he gets frustrated knowing that despite being so much younger than he is, she is able to keep up and understands everything. 

More and more he’s becoming less interested in school because as he gets older he is painfully reminded on a daily basis that he’s not quite the same as other kids. He can’t keep up, he struggles to understand, can’t find the words he wants to get out. So rather than expose his weakness, and avoid the cruel jibes of his peers, he stays quiet and hides in the background at the back of the class. I don’t want that for my little boy. What mum would want to send their child to school to experience such horrors? The guilt and my inability of protect my son from bullying and the anxiety he experiences going to school, gives me many sleepless nights.  

 

One good thing for us during Covid has been that he’s actually felt happier and calmer as he was safe at home, doing the things he wanted to do. He often asked why he had to go back to school.  

I’m definitely not a natural teacher and even though he’s clever, I’m not the best at providing anything like an education that he’d get at school. Even if he struggles with his school work at least he was being taught something. The teachers tried their best to engage him online but the interface of a screen and a keyboard isn’t easy to navigate for a child like him who struggles to process language. He couldn’t focus for long as he became exhausted and frustrated trying to understand what was being asked of him. We managed to get through with the help of an SLCO family coach who helped create a framework for the day to which I tried to work to. It helped him, and me enormously, using a structure for the day, that was laid out clearly, with visuals too, that helped him understand how the day would go and what we’d be doing. 

  

Introducing some of the language support resources was really helpful as this allowed me to work every day on a 1:1 basis whilst we spent so much time at home. I can see the benefit of making the time to practice with him. I do believe that has built up some confidence and has made a difference since he went back to school.  

He’s only 9, such a tender age, he’s not shy at home but watching him disappear into the background with no friends at school makes me so desperately sad and worried. I don’t want the things he’s worked so hard to achieve, be ripped apart as his emotional state takes a battering trying to cope with the change back to a classroom each day. 

Even outside school, he has no friends, no connections other than the family. What happens to him as he gets older? I don’t know what to do some days. I watch him and  his little face that started off smiling in the morning, morph into a down at the mouth, shoulders dropped silhouette walking through the school gate; just on his own. You see him look straight ahead, other kids jumping around chattering to each other, happy to see their pals and setting off into class together. I can only imagine what he is thinking and feeling. The sinking feeling in the pit of my stomach is probably what he feels too. 

  

Covid affected our family a lot. The inability to go out much, the challenge of providing a routine and stress free home for the kids. I’ve been worried about how he’d cope with the change. His disabilities affect his emotional state and his speech gets worse when he’s upset. He’d worry about whether we’d all be ok, whether we’d be infected if we went out. He often watched the tv news and you could see how alert he was to the pandemic as it got bigger and bigger and more dangerous. 

  

He was fine when he was at home but now that things have returned to a bit more like normal, he’s struggling to regain the momentum and get back to a routine that he’s comfortable with. He’s just expected to cope. His feelings of anxiety and his nervousness about school, they just get overlooked or dismissed. His needs don’t fit the normal response and nobody seems to be able to address that. The school talks of GIRFEC- I didn’t even know what it meant. I had to smile when it was spelled out to me. I recalled I’d heard it before, I must have forgotten it as it didn’t mean much to me. You are certainly not getting it right for my child! 

The school tries to help but they’re so busy with so many kids who need help, there’s just not enough time for him on the individual basis he needs. In order to keep him calm after say an incident in class, all the school does is remove him to a safe space. On his own. How that is supposed to help I don’t know. 

He already is isolated due to lack of friends and he’s not able to go out on his own. He feels he doesn’t fit in, he experiences it daily in class. Making him feel more isolated seems cruel but the school tells me they can’t do much more. I’ve asked why not, made suggestions, but nothing much has changed. You feel invisible as a parent sometimes. And I feel I let him down, School isn’t designed for kids like him. He’d probably do far better with home schooling but I don’t feel that I am able for that or even know how to. 

  

I do the school run most days. Sometimes, he’s at his dad’s and he takes him but he doesn’t seem to notice what I do. His dad has a new life and a new baby and his focus isn’t our son any more. It’s all left to me. If anything goes wrong it’s more likely I’ll be to blame. And it’s very hard. I’m not the super mum I read about on some of the mums forums. I’ve stopped reading them, stopped joining in. I don’t identify with the descriptions of their lives and I can’t keep looking at the perfect pictures in my mind of a home life and children that I am unable to create.

I feel alone a lot of the time. I have a few friends but they don’t really understand what it’s like having a child who’s so different and needs so much support. I can’t get out much, I don’t have much support around. My own parents don’t keep so well and I don’t like to ask them to do too much. Especially during Covid. Our relationship kept at arms’ length for so long has been hard for them and trying to support them as well as my own family made it feel like I worked around the clock. Month after month. Day after day. 

  

It is hard waking up each day, knowing that you’ll face the same challenges day in, day out. I feel guilty for feeling like that as I’m blessed with the children and family that I have. But I feel inadequate most of the time. I can’t always keep my emotions in check and end up in tears or yelling at the kids and they don’t deserve that. 

It can feel like you’re trapped. You want to feel positive about the future but in truth it makes me scared. For my son, life is going to be difficult, I see it getting harder for him. He’s just the same as anyone else and needs to be out with his friends. But it’s not possible. He’s vulnerable. He takes things literally and he gets very confused and ultimately frustrated when he can’t keep up with a conversation. 

  

I understand the feelings of isolation. I experience it myself. I stand at the gate, when the other mums chat together and don’t include me. Is it me I’ve asked myself? I don’t think so. I try to make eye contact and smile but I think the other parents are scared to approach me because they think their child might have to engage with my son. Everyone sees how we are when we near the school gates and how the other children ignore him. I wonder what I’ve done wrong.  

  

What do you do as a parent in these circumstances? You want to stand up and shout HELLO! HELP! But you can’t. Your voice is easily silenced. There has been a constant erosion of confidence, feelings of drifting around in a landscape that’s blurred. You can’t see the woods for the trees. Feelings of self doubt and failure wash over you, drowning your ability to speak. 

I wish that some of the mums who see me standing at the school gate trying to hold back tears, just took a minute to say hello, take a moment to think what life is like for mums like me. And little boys like my son.

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