Sunday, 27 July 2014

The best day....

On the second day of the school holidays, we were invited to a friend's house for an all day get-together. There were numerous other families there - some we know reasonably well, others less so. But everyone there had a child with a disability or special needs with them, as well as numerous siblings.

When we arrived, this was the amazing set up in the garden - both Jess and Anna were so excited!

There is something unique about getting together with other families who have children with a disability or special needs, and of course their amazing siblings. Despite the children having a wide variety of conditions and levels of disability/ability, everyone just "gets it".

It is a very comfortable environment to be in, knowing that everyone around you understands and no-one is going to judge you on anything (even letting your youngest child survive the day on crisps and cherry tomatoes as you are having too good a time to spoil it by having a fight. Or is that just me?!) We all had a great day.

Jess spent most of the day in the paddling pools. Her favourite was the biggest pool. Our friend had an inflatable seat, and we put Jess in it in the late afternoon and she literally just floated around the pool for over an hour.

Jess has always loved the water - swimming, baths, you name it, so this was always going to be something she would enjoy. However I think what she loved best about this was just how included she felt with the other kids. She was in the middle of the pool, surrounded by lots of other children who were splashing, screaming, coming down slides and bashing into her, using water pistols around her - and she loved every minute!

Everyone there was in awe of just how happy she was, and she was still laughing and grinning about it when I put her to bed that night.  It really was one of her best days ever! I can't express how grateful I am to our friend for hosting such a special day, and to all the other families for making Jess feel so included.

The only problem is, it was only the second day of the holidays. I'm not sure how we are going to beat that in the next six weeks!

Monday, 14 July 2014

Changed Expectations

Jess turned 5 this week,

We don't have a great history with her birthdays- her first went ok, we had a party for her although even then I remember having conversations along the line of "she'll catch up" and "all children develop in their own time". For her second birthday, Jess had only been diagnosed the week before, so we were very glad we hadn't arranged a big party as we really weren't feeling like celebrating. For Jess's third birthday, Anna was only 8weeks old, and was in hospital with meningitis. For Jess's 4th birthday last year, we went to Peppa Pig world, and I wrote here about how that didn't go to plan.

So this year, I didn't have high expectations. Her grandparents were here, and we had some lovely presents ready for her to open after school.  Her dad took the day off work so we could do up her bedroom as a surprise for when she got home.

As a parent, you always want special days - Christmas, birthdays, family events - to be perfect for the child, but with a disabled child there are just so many factors that are out of your control. Previously I have been quite upset when things haven't gone to plan, or Jess has been unwell, too tired or unhappy with events.

But this year was different. Jess had a lovely day at school, with a birthday party and even managing to eat some birthday cake. However, this all exhausted her, and when she got home from school, she was not all interested in opening her presents, or blowing out her candles- she made it very clear that she just wanted to chill out, watching CBeebies. And you know, that was ok. She opened a few presents that evening, some more the next morning, and the rest the following evening.

She did however notice her new bedroom layout and decoration. Despite being very tired, she gave me a massive smile and kiss when she saw it! And the next evening, she really focused on all the changes and was very excited.

I obviously recognise that it is not your average child who isn't interested in opening their birthday presents, but it didn't upset me. I was glad she had such a lovely day at school, and whilst it wasn't how I had planned or hoped the day would turn out, it was how she wanted it to be. Which is what it should be all about.  Another stage of acceptance maybe?

Saturday, 5 July 2014

Strangers in the house

Having a family member with complex care or health needs means having to compromise a lot. One area is that of privacy. We have so many people coming in and out of our house and many of them have to ask very personal questions.

We have carers, volunteers, nurses, physios, OTs, speech therapists, dieticians, social workers, teachers, reps from various companies, engineers setting up/repairing equipment and various managers of all the above people coming in and out of our house to check it is a suitable working environment for their staff all very regularly, as well as others who I can't remember now!

Long gone are the days where I would frantically tidy up and Hoover before each visit- there are too many visits now, and to be honest, I've got better things to be doing. So as long as the house is vaguely presentable (well, at least clean, if not always tidy!) they take us as they find us. Even if that is in our pyjamas!

A whole load of strangers also know (and write on a central computer system for others to read) lots of information about our whole family, not just Jess' health issues. They know many random things, and a lot of personal things, such as our family routine in the morning, and how my husband and I divide all the chores to how well we are coping emotionally with everything going on and the state of all our relationships - immediate and extended family as well as friends. It's a lot to share with strangers, but necessary to ensure that we, and ultimately Jess, get the help that is needed.

I've only just realised how intrusive all this is now we are beginning to reorganise our house to make it more suitable for Jess in the long term. Part of this involves us moving bedrooms - this will make much better use of our space and allow all Jessica's numerous supplies of nappies and feeding equipment to be stored near her bedroom, rather than where they are now, which is pretty much the furthest away from anywhere that Jess spends time as it could be!

However, an added benefit of this is that our new bedroom is much less visible to people coming into the house and needing to see/access/spend time in Jess' bedroom or to use the bathroom.

This wasn't deliberate, but I am quite excited by this - it feels like we are reclaiming a bit of space and privacy just for us.