The New Normal

Around here, we don’t go in the paddling pool. We sit next to the paddling pool and play Lego. 

Around here we don’t run through the sprinkler because running through the sprinkler means his clothes might get wet and he hates it.

Around here we don’t eat the tomatoes on our plate at lunch but he does eat grass and mud and stones and anything else he can put in his mouth before Mummy wearily holds out her hand again and says “out your mouth please darling”.

Around here, we don’t much care for the sun. For suncream and sandpits and ball games and people trying to entice us into the paddling pool. The Lego is fine. This blanket is fine.

Around here we don’t often play all together. We don’t wrestle and splash and stay up until it gets dark. We don’t make mischief and know that there is no school tomorrow. Around here things are not carefree. 

This is our new normal.

The truth is that some days I am in pain. The sort of pain that is heavy and deep and ugly. It has another name. Jealousy. 

I wish for that which seems so carefree. Long lazy days of water fights and hide and seek and superheroes and sword fights that include all of us. Not just three of us. Of late bedtimes and not having to explain every day that no, you’re not going to school darling. School has finished. I wish not to feel that pain when I watch him walk away from his brother as he looks after him wondering why he doesn’t play. I wish for conversation and bug hunting and treasure maps and make believe ice cream shops. 

I wish to not see the hurt look from family or friends when he rejects their offer of a new game because he’s happy with this one. Again.

I wish for things to be easy for him. That the water didn’t hurt and the words would just come.

But I know how lucky I am. God I’m lucky. Surrounded by boys who love me and who I love fiercely and painfully. Who love reading and Lego and lifts and who are content to just be. Who are funny and who laugh and are happy with this new normal. It is I that must adjust. It is I that must change.

I am trying. I promise you that I’m trying. Today we went to town just to ride escalators and go in lifts and eat burgers and go in more lifts and he was happy. The happiest. And I was too. 

Around here we do things differently. Because this is our new normal. Our next to the paddling pool, lift riding, Lego building normal. Whatever he needs. As always,  whatever he needs. 




7 thoughts on “The New Normal

  1. Came to read this as soon as I saw your Instagram photo and I’m in tears again for you and for me. It hurts. I feel the jealousy too. I’m dreading these summer holidays if I’m honest because I will have to encounter more and more atypical kids who will be doing what my son can’t. I’m jealous and I’m also pissed off at the unfairness of it all.
    Sorry if I’m being all down in the dumps. Just having a bad few days I suppose. I hope we both stop feeling the jealousy really soon. Lots of love to you and your beautiful family xxx


  2. As a teacher of children with severe and complex needs, you’ve no idea how much I enjoy seeing your photos and reading your blog. At the moment I have 8 autistic boys in my class, and you are the type of parent I hope every one of my little people could have. I’m sure I do not need to remind you, but I know it’s always nice to hear…you are doing a truly amazing job at raising two amazing boys.


  3. Thank you for putting into words my everyday experience of life. So wished my boy could make friendships. He is nearly thirteen and never leaves home without an adult. I am jealous of lads his age who are able to go out with their friends alone and don’t need an adult deciding for them how to fill there days. This is my reality. X

    Liked by 1 person

  4. This is a lovely post, I completely understand those feelings and the triggers that bring them on. And then (as I’m sure your little boy does too) my boy does something so sweet and beautiful and I am washed with guilt for even feeling those pangs of jealously. And I know I don’t want anyone but him. It is such a roller coaster of emotions, exhausting at times, back and forth and I wanted you to know, I get it! xx


  5. It sounds like you’re doing a fab job & your little one is lucky to have you as his mum. Your post puts into words how I feel sometimes & you’ve no idea how good it is to know I’m not the only one.


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