It’s not because I’ve got anything against Nick Knowles, quite the opposite actually, I think he seems like a great bloke
(and crikey, if I manage to hold back the tears beyond the first 30 seconds of the programme, I’m guaranteed to chin-wobble when he shows emotion).
It’s because I really feel that in this country, those with additional needs shouldn’t have to rely on a TV show, rallying for amazing volunteers, to get the provisions they deserve.
I used to watch the show before I had Heidi.
I was often left in tears, as I wondered how these families with severely disabled children got through the day, let alone how they managed the actual logistics of lifting and carrying, storing equipment, managing meds.
There was no warning that this was going to happen to us.
I had a dream pregnancy (well, if you discount the 24/7 morning sickness in the early stages!) so finding ourselves thrown in to the world of special needs was a bit of a shocker.
You would think though, maybe, that in this day and age, there would be a bit of a guide for parents like us.
Heidi wasn’t the first baby to suffer a HIE event (hypoxic ischemic encephalopathy – basically a lack of oxygen to the brain).
She wasn’t the only one to be tube fed; she isn’t leading the way in terms of tracheostomies; she wasn’t unique in getting a diagnosis of cerebral palsy.
We have learned, during our fast-track education in all things special needs, that you often need to anticipate things, and push for resources.
A prime example of this is our lift battle. Anyone who knows us will no doubt groan at the mention of this (sorry folks!). They’ve heard the story a thousand times.
It’s been an ongoing saga and I wouldn’t blame them at all if they stopped asking where we’re up to!
When Heidi was 10 months old, we had a pretty good idea that as she grew she would need more support (wheelchair, standing frame, hoists, that kind of thing).
We thought ahead, and looked at our house. It’s a pretty standard 3 bed semi, and we realised we could make it more accessible and set to work with a few changes.
Thank goodness we were able to do this, as equipment piled in and our front room looked more like a trolley park at a supermarket.
We’d done our research and knew that a Disabled Facilities Grant (DFG) was available to apply for, and guessed it may take a little time to put in place, so made a start.
Yes Heidi may only have been a dinky at that point, but with a tall mum, and a 6 ft 5” dad, it was unlikely she was going to stay that way for long!
We are now over 12 months in to the application and it still hasn’t been signed off.
There have been meetings, phonecalls, meetings, emails, meetings…and the occasional (!) expletive along the way.
Anyone would think we were asking for a gold lift with a marble floor and diamond encrusted control panel. We’re not.
Heidi hasn’t got good head or trunk control, so she can’t hold on to me when I carry her.
I have it down to a fine art, I can hold the handrail with one hand and grab her in the other arm, but it’s getting harder as she gets longer and heavier, and a carer wouldn’t be allowed to do it (mum’s backs don’t matter, obvs!).
We aren’t the only ones to battle.
I know from various forums I’m on just how exhausting this fight can be for people, on top of the usual day to day challenges.
It’s not just lifts that people need – it’s wet rooms, ramp access, downstairs bedrooms, or re-housing if their current place isn’t adaptable.
Nothing extravagant, just access to the kind of things that we may have taken for granted beforehand.
There should be a simpler, quicker process to help those who need it.
We have faced objections and had to come up with solutions; just one example – our proposal was to have a hoist track from Heidi’s bedroom, across a small landing, to the bathroom.
We were told that this may not be approved as we had to “think of Heidi’s dignity”. Erm, yep – she’ll be going to the shower and may be in a towel or dressing gown, heaven forbid she may even be naked!
The landing doesn’t go past a window, it isn’t in a public area, and the majority of the time, me and my hubby are the only other people in the house.
That’s the level of challenge we’re dealing with…maybe explains why we get a little frustrated!
It’s fantastic to see the house transformations on DIY SOS, they must truly be life-changing, but if you think of how many people they help, compared to how many people need adaptions, it really is just a drop in the ocean.
I hope that one day the programme won’t be needed (and of course that there is another role for Nick, would hate to see him and the team unemployed!).
The battle continues…!
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