If you want to be strong…

If you had asked me 6 years ago how I would cope having a child with special needs, I probably would have said “I couldn’t do it”. 

If you asked me 3 years ago how I was going to fight for my child’s every educational and social need for the rest of his life, I would have told you “I don’t know. I don’t think I could do that.”

If you had asked me 12 months ago how I would feel about becoming a single mum, I would have told you, “I couldn’t do it. There’s no way I could cope with autism on my own”. 

Well here I am. 

I parent a child with autism. I’m not perfect, but I do it. I get up every day, and give it a shot. I even enjoy it! Somebody said once, that you don’t have to be the perfect parent; you just have to show up. That’s very true. And even though I often mess up, I always do show up. 

I leaned how to advocate and fight for his needs. It didn’t happen overnight, it was a process. And I’ve made mistakes. I’ll no doubt make more… but I do it. I listen to people around me. I watch. I figure things out and gather information. I’ve taken officials to tribunal and written letters to MP’s. I’ve connected SEN parents with one another. I information share, arrange meet ups. I network. There’s power in numbers. And knowledge is power. I would never have thought I could do any of these things. But here I am. 

Now… the single mum thing. It turns out that 2017 is the year of dizzying change for me. I’m about to embark on my first ever solo adventure. Just me and the kids. I’m going to have my own house, my own bills, my own rules, my own company. And I’ll be looking after two very small, vulnerable people. 

To be honest, I’m used to shouting for help if the Pickle is having a meltdown. Or he won’t stop sensory seeking and I need some time out. Or when my younger daughter is screaming at me and hanging off my clothes, and I’ve reached the end of my patience! It’s going to be a new and probably lonely experience dealing with this stuff alone. I’m used to having company, someone who’s coming home at the end of the day to fall back on. Someone to tell all my crazy stories to. 

Although I spent a LOT of time doing things for the Pickle, I’ve become lazy with certain things. It kills me to admit it… but over recent years, we’ve grown apart. 

I’m there for all his appointments, I dress him, feed him, bath him, look after him when he’s ill, make sure he’s warm, comfortable, happy etc… but the human moments. The closeness…. Let me explain.

I spent 9 months carrying him, feeling him kick, hiccup, turn around in my belly. Then when he was born, I spent every single waking hour with him. Feeding, cuddling, snoozing, and loving him fiercely. We were inseparable. I felt like I was the first person to ever have a baby! He was my complete world. I idolised him. 

But then things changed, and it happened so quickly I didn’t even realise. Between the ages of 2-4, the fuzzy, warm happiness had changed to concern, worry and fear. Second guessing all the time why he was so behind, trying to get somebody to listen and help us. He received his diagnosis age 3. He was becoming more difficult to handle and we hadn’t yet learned the skills / techniques to cope. It was a difficult time. Add in my own personal struggles with the permenance of our new future, and then add in 2 rounds of IVF, a house move and a new baby. 

Me and Pickle accidentally became distant. Daddy P would often take him out, they would do things together at the weekends, and I would stay home and take care of the baby. I felt exhausted. I was stressed. I was happy to have the responsibility lifted for a while. 

Soon habits and routines were formed, which meant that things between us, never quite got back to how they were. And I knew that it would never ever really would be the same. Life had changed. The Pickle and I did lots of lovely things, and we still spent time together, but usually as a family. The one to one time with always with Daddy. We would still occasionally get those moments together, it was just much less. When we did share a moment, my heart would burst, and I would cuddle him tightly, realising how much I missed him. But then we would fall back into routine. Me with the baby, Daddy P with the Pickle.  

I know it’s going to be challenging being alone, but there’s a real opportunity in this. Being alone will force me to stop being lazy. We will get that time together again.

I know things will be far from perfect, and some days I’m going to tear my hair out. I’ll make a ton of mistakes. And he is going to drive me mad. But he’s my first born child, and he needs me. And I really need him. I want to get that closeness back. I miss him so much. 

Like everything else that I have done in my life, that I honestly though I couldn’t do; I’m going to do this too. And I know I can do this, because I believe in myself, and I believe in him. We’ve got this. 

I’ve got this. 

3 thoughts on “If you want to be strong…

  1. Dan

    You are strong, always were since the first time I met you. Sorry to hear you’re getting another chance to prove it, but backing you all the way to come out of it better off.

    Yell if there’s anything thing I can help with.

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