Monday, 24 August 2009

So How do you know when you're "done"?

A friend on an online forum posed this question about feeling your family was complete. Someone replied "I do wonder about people who get caught in the baby cycle without stopping and taking a step back from their comfort zone".

I've been thinking a lot about this lately. More isn't an option for us anyway, we would need fertility treatment and with H's needs I couldn't cope with more. AND another would most definitely have even more severe Reflux, probably ADHD and Asperger's so it's a no brainer deciding that we are done!!

That, however is different from "knowing" you're done. I do really miss the tiny baby thing, wish like hell that I could do the early months again with any of them without reflux, I feel really cheated on that score. The constant screaming was a bit wearing when everyone else seemed to get at least 10 minutes a day cuddling their new babies! (jealous, moi?!)

As I have now parted with the buggy, and I packed the slings away at the end of last year I have really felt the pain. (How many of us wish we had discovered things like slings years before so we had really had plenty of chance to put our new knowledge to good use?!) I feel really sad that I'm "moving on" but there is some excitement too. I'm tired, (5am starts for nearly 12 years has definitely taken their toll lol!!)I'm feeling "old" and quite enthusiastic to spread my wings outside of the home. The older ones are exciting too, I LOVE watching J's cricket success, sharing in his triumphs, watching H's slow steps towards greater independence and spending time helping fuel the twins' incredible excitement as they learn about their world.

What I'm trying to say I think is that I do *know*. I'm ready to move on, share the next stage with my family looking forward not back. Being part of online forums definitely makes it harder at times (seeing the scrummy newborns! ) because I think in real life when you are ready you move on, and rarely see newborns as your children's friends grow up too. However, these online communities are a lifesaver for many for whom wider socialisation is impossible or contact with others dealing with similar issues is facilitated across geographical, social and economic barriers.

I'm ready to leap out of the comfort zone and join the next stage - without prams, cots, nappies, dummies and total dependence. Don't underestimate how VERY scary that is when it's what I aimed for my whole life, obsessed about for 24 years before #1 arrived without a single though for what lay beyond.

But you know what? It's quite exciting too :D

So yes, I think you do *know*!

Sunday, 16 August 2009

My son

Noise. Shouting. A tornado bangs open the door disguised as a banshee.
Unable to stir myself fast enough from the depths of sleep I endure the screaming overtones from under the duvet.
The irrepressible need to expend a night time of stored energy sends him ricocheting around the house.
More screams.
The timer starts..... half an hour until it's over.
Shouting, cursing, it's everyone's fault. Apparently.

Vainly I try to channel the irrepressible energy within socially acceptable limits
Keeping everyone safe.
Fifteen minutes.
Breakfast would be a good idea - but he won't until the medication kicks in, can't when it does.
The distress is palpable, on all sides!
Nothing broken yet, no one hurt so far.

It's almost amusing at times. Well, almost. And sad - really sad.
I watch the person inside emerge from the noisy, aggressive strait jacket which alienates everyone as the minutes tick by.
A rare glimpse of my special son, a chink of light through the exoskeleton I hate-

Before the curtain comes down, he calms down and retreats into himself once more.

Wednesday, 12 August 2009

Hurrah for Legoland!!!

So last week I took H down to stay near a friend in St. Albans (hotel courtesy of Tesco Clubcard Vouchers) and took him to Legoland for a day. Someone had told me how great Legoland were for kids with disabilities, and they were not wrong. I obtained a letter from H's ADHD nurse regarding his total inability to queue, and in fact his lack of understanding of the CONCEPT of queueing. After diagnosis no one bothers with follow ups for the Asperger's/Autism so a letter for that alone might be more complicated to obtain...

We took the letter in and had our hands stamped with our "Exit Passes" which allowed us to walk up to the exit of each ride and jump straight on! Amazing! Usually the queues are so bad at Legoland you manage a couple of rides only each side of lunchtime, but we did the LOT :). Taking H without an Exit Pass would have been a total impossibility but this gave him the opportunity to enjoy a "normal" day out. We managed only 3 relatively minor meltdowns, two when Mummy couldn't find the Exit fast enough and one when I realised the Lego game he wanted wasn't Vista compatible, but the staff were great. I got in free as his carer too.

H thought the hotel was "really posh, real luxury" but kids are (thankfully) easily impressed at that age! There was a pool and even after 9 hours walking around the Park (who informed him it close at 7pm?? There was no way he was leaving earlier once he knew that lol!) he wanted an hour's swim.

Breakfast was something else... the buffet really confused him. "How do you know what to eat?" he asked. "How can I know what I should eat first?"!!!

Sunday, 9 August 2009

For all my readers who claim DLA for themselves or family members. Please read!

The Care Green Paper lists proposals for the future funding of social care. One of the proposals is that Disability Living Allowance and Attendance Allowance, known as disability benefits will be abolished and the money allocated to local social service departments or a new national care organisation. The implications of the loss of this money for disabled people and their families are many. Whilst this money would then be used to provide care funding, the funding an individual receives will be subject to assessment, and it is likely to focus on the 'basics' of care provision. There is likely to be strict criteria, even where people use so-called self-directed support.

DLA/AA on the other hand is paid directly to disabled people who qualify, to be spent in any way they choose, and is aimed at meeting the extra costs of disability. Extra costs of disability has a broader definition than care, and could mean care outside of the statutory assessed and funded provision, but can also mean meeting the costs of extra heating and fuel costs, because of mobility problems, higher food costs, because of needing convenience foods or special diets, extra clothing because of extra wear and tear, more expensive footwear because of foot problems, domestic assistance often not met by LAs, or equipment to aid independence not available from statutory sources, as well as mobility needs such as extra transport costs, there are many more. The ways people use DLA to meet their needs are as individual as the people themselves, there are no restrictions, the claimant has choice, control and independence. Removing the benefit will not remove the needs, which are unlikely to fall within the official definition of care. Many disabled people have such low incomes that they have to use DLA just to meet the basic costs of living. In the most basic terms it will mean a loss of income, which for some may mean the loss of additional amounts, currently linked to DLA entitlement, within other benefits.

Disabled people and their families will suffer, lower incomes mean more poverty, people will have less freedom of choice, and less control over their lives, this will lead to a poorer quality of life for many. Care is likely to be means-tested, it is currently, where DLA is not. Means-testing means that some people in need will miss out on help, just because they have, perhaps a few pounds over the limit.

This is not, in real terms saving money, the new arrangements are likely to cost more. DLA is a very under claimed benefit, not just in terms of people not claiming, but in that people on the benefit often get less than they should, because they do not realise when they qualify for more. Do not believe the media hype, the truth is DLA fraud is very low, underpayment is much more of a problem. Disabled people are also expert in finding cost effective flexible ways of meeting their needs, the new system which will affect many disabled people and involve a huge amount of assessment and administration is likely to be much more expensive.
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