Okay, this is not a 'pity post'. This is just a 'this is how it is' post.
We returned from our holiday on Monday and I think a post on what it's like for people with 'normal' (don't you know I just hate that phrase, like who do you know that could honestly be described as normal!) children compared to what it's like for Ella is good for me to write to vent how I feel. But also for you lovely readers to know what it's like. And feel free to post nice comments, does the ego the power of good:)
So you have a family and plan holidays. When they're little you pop them in the prams and they are taken everywhere. As toddlers they get to dance at the disco and then fall asleep in the buggy while you carry on dancing (Well, okay not Jeff, cos we all know that him on the dance floor is not a pretty sight). Then they go to the Kids Clubs and you get a couple of hours break while the kids are entertained so you sunbath, read, go back to bed ;) Then they play by the pool. They make friends and move slightly further away from you but remain within eyesight. By the time they are teens although they come on holiday with you and do some uncool family stuff they are spreading their wings. You can leave them in the tent/ caravan/ apartment/ whatever while you go clubbing/ for a meal/ whatever floats your boat. You come back feeling refreshed having spent time with the family, but having time to yourself to whatever you fancy - reading, sightseeing, sunbathing, etc, etc, etc.
Rewind now to a child with SN - well our Ella - I mentioned earlier there's no such thing as normal, every child is unique (and isn't that a wonderful thing?), but there are probably overlaps like there will be in the above waffle. So yes, we have the pram. And we have the buggy. And there the similarities end. Leave Ella in a holiday club isn't an option. She couldn't possibly cope with the activities offered for her age. If the Club is obliging they might let her stay with the 3-5 year olds, but we wouldn't feel comfortable leaving her - what if she has a meltdown? I so don't even want to think about that. If she wants to go in the pool, or outside to play, one of us goes in with her - how many 13 year olds still need that amount of attention? She won't sleep unless one of us is with her, so Jeff and I won't get so much as one evening to ourselves during our holiday. And before you say it, no we can't sneak out once she's asleep, that child has a sixth sense and stirs the minute we move! Now I'm not talking disappearing clubbing (yes, those of you that know me IRL can laugh at that thought I don't mind!) or even going for a meal, but just sitting in the garden playing cards would be nice. Every minute of the day includes Ella, whether it's eating, shopping or sleeping, so same day, different country. Our activities are influenced by Ella (see earlier post about our unsuccessful trip to Penne D'Agenais). We have the wheelchair but have you tried to use one? I swear people (not you obviously :) ) treat wheelchair users worse than prams and buggies. Once she's awake that's it, so are we. No persuading her to go put the telly on while we go back to sleep - I dread to think what we'd wake up to if she ever agreed LOL! Oh, and let's not forget the actual holiday itself. With one of Ella's areas being Autism she likes repetition. So even going on the holiday could be fraught with complications as she adapts to new surroundings - if we're lucky that doesn't take the entire holiday. Thankfully we often go to my brothers, which is a blessing. She knows the people, the house and the bedroom, so one less major issue just a few days adapting. But, let's be honest, we can't keep going to my brothers for a holiday for the rest of our lives - for his sake LOL! Then we have another issue, how would she cope on a plane? What if she has a meltdown on it - unless you've witnessed one first hand (Joy x Lynn x) you would not believe how loud and unpleasant she can be.
Then we get back home and more adjustments. Ella has spent most of the past 3 days on the settee with her teddy, her pegs and one of the Twilight DVD's. Her comfort things while she re-adjusts.
So, I'm not moaning, we have had a break (which we didn't get last year), saw my brother and his family, and also saw the strange yellow ball in the sky - completely forgot what that was! But don't assume that any parent with a SN child has had a rest!
Deep thoughts nearly over! Someone posted Ofsteds thoughts on disabled children. One point, I'd like to see the statistics that make them feel they have the right to make such bold, generalising statements. And secondly I would totally disagree, you absolutely do need the SS to support the parents. We are truly blessed to have a strong support of friends and family but I have been close to breaking point this past year. If you don't have that network, or the support from the SS, how do you cope?