Why I Wish DIY SOS Didn’t Exist

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.

Fast forward a little over two years and our family is now in that exact same position (minus Nick and the team!).

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.

Why then do we often feel like we are the first ones to go through things?

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.

At 15 months old, we made enquires about funding for a lift.

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.

We simply want a way of getting our girl upstairs and down again, safely.

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 spent hours researching, calculating, and planning to back up our application.

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!).

That those who have housing needs can find support and solutions in a timely manner, and purely from a selfish point of view, that we get our lift.

The battle continues…!

Special Needs Parenting: Blue Badges Make Me See Red

Since applying for our own Blue Badge last year, (our little girl is tube fed, needs suction, used to need oxygen, and is in a wheelchair) I seem to have developed this new sense at spotting cars parked in disabled bays without the appropriate badge.

I can do it from some distance now, and it makes me mad.

I’m usually a pretty calm person, really I am, but I found myself the other day saying rather loudly, and sarcastically, “I think you forgot to put your blue badge out”, as someone jumped from their car and breezed past me as I struggled with all our bulky equipment, putting a bit of a sweat on.

They looked at me like I was speaking a different language, and carried on their way.

Of course as soon as the words had left my mouth, I panicked in case they said something back! I don’t do confrontation, instead I keep things to myself then get so annoyed when I’m home for not having the bottle to speak up.

The frustration comes from the fact that people who park without badges just don’t realise the impact it has on others.

I don’t need to be near the shop/pharmacy/park or wherever it may be, but I do need a wider bay so that I can get the doors open and everything (including my little girl!) out.

If I see an end space, I’ll use that instead of taking up a disabled bay, and I know lots of friends who use the same logic.

The, “I’m only nipping in…”, the, “there are plenty of other spaces…” and the, “My mum is at home and she’s disabled…”, just doesn’t excuse non-compliant parking.

I’m at the stage where I am seriously considering printing some leaflets to pop under the windscreen wipers of offending vehicles.

It would be a polite notice (just in case someone had genuinely forgotten to put their badge on display, it’s so easy to do when you’re head is full of what’s on your to-do list), but hopefully make people think about doing it again.

It makes me laugh though – me, trying to change the world, one leaflet at a time!

I also think it would be helpful if places such as supermarkets (some of who are now fining offenders who break the rules in terms of disabled and parent and child parking) had some disabled bays away from the store.

Of course for some, parking needs to be as close to the store as possible; for people like me, who just need the space rather than proximity, maybe bays further away would deter the lazy mis-users, and free up some of the other bays for genuine blue-badgers (which, by the way, also makes me laugh as it conjures up an image of a smurf-like animal!).

So, my plea to all is simple – be a courteous parker, don’t make me go out there with a leaflet!

Not much to ask, really, is it?

Special Needs Parenting: Finding The Right Words

So why is it so hard to sometimes find the right ones?

I’ve become more aware of this since having Heidi.

11 days overdue, after a healthy pregnancy, Heidi arrived just in the nick of time to be the best Mothers’ Day present I could have wished for.

Unfortunately she suffered an HIE (hypoxic ischemic encephalopathy) incident soon after birth, meaning she was deprived of oxygen and has suffered damage to the brain as a result.

My inability to find the right words started almost immediately.

How do you tell your mum that her long awaited grandchild has arrived, but has been whisked off to another hospital for cooling treatment? How do you text your friends when you can’t use the standard “Mum and baby doing well” line?

It must also be hard for others to find the right words to use when they first hear that things haven’t gone to plan.

Is it appropriate to say congratulations on the birth of your baby? Could they be confident enough to say that everything would be fine? Should they say anything at all?

Over the months, since Heidi was born, I have found myself choosing my words carefully.

When people ask how she is doing, I like to say that she is developing, or gaining weight really well, or amazing us each day.

I was conscious at first that if I said “she’s doing great” that people might think she was unaffected, or get a surprise when they saw her with tubes and oxygen.

I’m not in denial about the challenges we face, but I don’t want these to define the gorgeous little girl that she is.

It’s sometimes words from well-meaning strangers that can catch you off guard; the person who saw Heidi’s feeding tube and asked what was wrong with her, or the lady waiting next to me in the pharmacy who asked me if Heidi would still develop “normally”.

Those words hit me hard at the time, and whilst I was of course polite in my response, inside I wanted to shout that there was nothing wrong with her, she was Heidi-perfect, and that she would develop to the best of her ability and in her own time.

I fully understand though that people don’t mean to upset or offend, and that many people struggle with finding those right words, just like I do.

Advice for anyone who finds themselves in that situation?

Admit you don’t know what to say.

Acknowledge that you can’t find the right words.

Give a warm smile or a hug instead, they are much harder to misinterpret!

Special Needs Families: All You Need Is Love

All you need is love.

And a consultant and physio that you completely trust.

But love is still pretty high up on the what’s needed list!

With Valentine’s Day on the horizon, and an episode of The Undateables on the TV, my thoughts have been wandering to love and relationships.

Our little girl, Heidi, will be two in March, and, to give a very brief history, suffered a HIE (hypoxic ischaemic encephalopathy) event shortly after birth (basically her brain was starved of oxygen).

She has Cerebral Palsy, and lots of the extras that go with it; epilepsy, dystonia, hearing and visual impairments, tube fed, trachi, developmental delays, you get my drift. Non-mobile, non-verbal, but pretty ace!

Now I know that generally, two year olds aren’t really worrying about whether they will find a partner, get married and have children. Episodes of Peppa Pig and the Twirlywoos possibly take a much higher priority.

Heidi isn’t your average two year old though.

As much as I try not to, sometimes I can’t help thinking about the future – both the actual future that we might have, and the “could have been” future that we had dreamed of before we started on this roller-coaster journey.

As my bump grew through the pregnancy, so did the images in my head of how our baby would grow up to be a toddler, a teenager, an adult, and what kind of person they would be.

It never crossed my mind that they may be described as, “complex”, or, “severe”, but that’s where we are, and the images have had to change.

I know that there is hope, and nothing is for certain, but I accept that it’s probably unlikely Heidi will develop to the stage where she could have a meaningful relationship, you know, like a boyfriend.

At first I felt a bit sad, but then I realised that she won’t have to worry about horrendous first date nerves, or about the number of Valentine’s cards she gets compared to her friends, or about if she will ever meet, “the one”, or about all the other things that teenage girls and women (and of course boys and men) have to ponder.

What she will know though is unconditional love. By the bucket load.

Watching The Undateables (if you haven’t seen it, it’s a TV show that follows people with different conditions and challenges, as they search for love) brought out mixed emotions in our household.

My partner was concerned that it could be seen as mocking people, whereas I felt it was a really positive message (apart from the title, not liking that too much, it makes it sound like these people won’t be able to date, or that there is something, “wrong”, with them).

I believe it’s showing that we’re not all made the same, but all have the same entitlement to love and be loved.

It opened my eyes to how amazingly different we all are.

I think I have been so absorbed in our little bubble, that I had forgotten to look out to the big wide world and see what was going on; the struggles that other people face; the battles that people go through on a daily basis; the loss and despair; the miracle stories; the celebrations; the laughter; the love.

So yes, being in the world of special needs may mean that we need extras to help us on our way, but we all need love, and I hope you have oodles of it.

Special Needs Mum: I’m a Fraudster

I’m a fraudster.

You see I’ve been given a job that I’m not qualified for…and it’s only a matter of time before I’m found out.

I applied for a new job, to become a Mum, in 2014.

It’s something I’ve always wanted to do, but never had the courage to apply before.

I felt a bit nervous about it, but had done my research and thought I could possibly scrape through with the little knowledge I had (OK, I had babysat for a friend on a couple of occasions, but everyone fabricates their CV a little, don’t they?).

Anyway, I don’t know how the mix-up happened, but in 2015, I was given a different job, not the Mum one I was expecting; I was given the role of Special Needs Mum.

I hadn’t seen the advert for this one, and certainly hadn’t applied for it, it just kind of happened.

Now I am nowhere near qualified for this position. I don’t have any medical background – I haven’t even stayed in hospital for more than a day before I got this job, and feel a bit queasy when I watch 24 Hours in A&E on the telly.

I don’t have any physio experience, never heard of portage, clueless about milk and weaning, and didn’t event know that feeding pumps and gastrostomy tubes existed.

I’m not sure how, but I think I have, just, managed to wing my way through 21 months in the job.

I did try to tell a nurse, when we were first in hospital, that I didn’t think I would be any good at this job, in the hope that she’d take it off me and give me the regular Mum role instead.

She didn’t. She told me that I would be fine, that I’d find my way, and would do whatever was best for my little girl.

Looking back, I guess she was right.

I’m no longer daunted by the medical terms that get thrown about during hospital stays; I’m a regular therapist doing stretches and exercises to help ease aching joints and encourage better head control.

A pretty organised admin assistant making sure that we turn up for all the appointments that have to be squeezed in to each week; a dietician, tweaking the volumes and rates of feeds; a nurse and pharmacist who orders and administers all the required meds (several each day); an advocate for our little girl; a play-pal to entertain and have fun with; and I’m a mum.

Just a mum. Turns out it was the job I wanted, it’s the job I love, even if it is harder than I could have ever imagined, with longer hours than I expected, and without any training plan to work towards.

I hope I don’t get found out actually, I can’t see myself doing anything else.

Now, I wonder what the chances of a pay-rise are?!

(If you’ve recently found yourself in a new, unexpected role, then hang on in there, chances are you’re doing great!)