Not-so fun in the sun

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After a few weeks of intense home therapy, we took a day off for a little jaunt to the beach. We headed to Weymouth to make the most of the sun with gran and grandad.

The weather was great but it ended up being quite a stressful day. The new Maxi-Cosi Axiss car seat that I bought for grandad’s car was an unmitigated disaster. It’s an off-the-shelf one (so costs less than £200 rather than the £900 that many special needs ones are) used by many SN parents because it swivels to make it easier to get uncooperative little bodies into the car.

Not sure if I’ve mentioned this before but Ted is very challenging in the car. I had high hopes for this seat though. Maybe this would change everything! In a word: no.

Ted HATED it, He screamed blue murder, extended loads, rubbed his legs on the seat’s (not very soft) material till they were sore, cried his saddest, most pained cry and was generally very unimpressed.

We chose Weymouth as there’s a good flat promenade but the walk was a bit windy for Ted who grizzled throughout, then he pretty much refused his lunch. All small things but it was a tough day for me. I’ve realised that doing new things, like having a day at the beach, brings up new challenges and old emotions. It was hard not to feel a bit stressed and broken and worn down by the fact that often everything is a challenge (especially when you don’t have an iPad to hand as a distraction tool).

The final straw was watching my dad carry my beautiful little boy down to the sea to dip his toes in the sea. I suddenly felt so sad for Ted and was overcome by how limited his little life is and how small his world can be. How robbed he has been of the simplest life experiences.

He should be sitting on the beach playing with the stones, toddling down to the shore for a paddle, splashing and exploring and screeching with joy as kids do on a beach.

Instead he is completely dependent on others to help him and amuse him and even then I felt we failed him as he really didn’t seem to be having much fun.

My mum says that he doesn’t know any different, but that’s cold comfort. Maybe I’m not sad for him after all. I’m sad for myself. I wanted to see my boy do these ordinary, boring, everyday things. To see him eat lunch in a cafe, to sit contentedly for a few minutes somewhere – anywhere, to turn the pages of his own book, to touch the stones on the beach and marvel at their millions of different shapes and sizes, to feel the waves lapping over his feet as he stands on the shore line. I can honestly say I don’t know if he will ever achieve these tiny dreams I have for him. And that is one of the saddest things I can think of right now.

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3 Replies to “Not-so fun in the sun”

  1. God bless you Emma you are doing an amazing job bringing up Ted life can throw challenges your way but as parents we try to approach these in the best way we can not always easy lots of love being sent your way you are an amazing family xxx

  2. Hi Emma
    I came across your blog on hope for hie foundaation. I like your writin Thank you for your honesty. I can totally relate to your experience. Our girl is eighteen months and cannot move by herself. So often i think she should be out there playing with the mud, running around, feeling water etc all the things little toddlers do. It hurts, and its painful when i think about it. But maybe i am sad just for myself because this was not what i had expected and i am just selfishly holding on to my own.dream. this is so confronting.

    1. Hi wen, really sorry that you’re in a similat situation. It’s hard not to be sad on our kids’ behalf. I don’t think it’s selfish of you to have wanted (or to still want) a different experience from the one we’re having. None of us signed up for this. We love our kids with all our heart, but it’s hard to watch them miss out on the kind of everyday experiences that childhood is built on. It’s reduced me to tears many times. Just lately I’ve been trying to think of it differently. There are lots of things Ted enjoys and that enrich his world so I focus on those instead. Hold your sweet girl tight and love her. Even if she could toddle around and play, it would be your love and the time she spends with you that she would remember anyway. I have my moments of feeling sad and robbed of the experiences I should have had but this lessens with every week that passes. I really hope the same is happening for you.

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