Hoisting sucks

We have been heading to a certain point for a while now. I suppose it's a bit like the opposite of a developmental milestone really; the point at which my back says "actually knobhead please stop making me withstand all 26kg of Nate as I might actually break and then you would be well screwed". 

Well consider that "milestone" reached. Yesterday i felt a pull, and a stiffness in my back. Nothing bad, but a warning nonetheless. 

You see yesterday was a day of screaming and crying, Nate not me (although I felt like it). Nate has ATR-X syndrome, for which there isn't a massive amount of information. What we do know however is that it associated with a large amount of abdominal pain and distress. The only break from this was gained while playing with puppies ( and I may have lifted him onto the floor for this...). One of these puppies is soon to be ours, but that's another blog post entirely.

The automatic response of any parent seeing their child in distress is to cuddle them in and so I spent much of yesterday picking Nate up and half dragging him onto my knee for comfort. With a hoist this takes a good deal longer, not a speedy or effect response. My attempts went something like this:

...Ok now just let me work out which of these loops on the sling I'm using again...ok you're going up! Oh shit is it charged? Right I'll move you to the sofa and...oh now that doesn't work I can't get you onto it...err I know I'll swing you in and lower it at the same time...shit no that's not working either I need to be a fucking octopus...

*gives up, hoists onto floor, cuddles Nate on the floor* 

So it all went well. 

This got me thinking. We had hoists put into the old house which we rarely used. Partly because I could manage most of the time, but also because no one actually showed us how to use them. Hoists and slings arrived and that was it. No advice about loops on slings or how to work this out, no being shown how to attach it to the hoist or advice about getting the sling on Nate either on a bed or in a chair. Nothing. It's no wonder that so many carers suffer from back problems. Even after the battle is won to get the equipment you need, there's no training to actually use any of it. Or maybe that's just our experience? I asked my lovely portage worker much much later about slings and she showed me what to do, but to be honest I forgot much of what was said. I wasn't in the greatest shape mentally and struggled to retain any information at all. It's purely through training I had to do for other reasons that I have any idea about rolling on and off slings and towels, or using hoists at all.

 That can't be right can it? 

So now I accept I need to use the portable hoist, but it doesn't do everything I need. It can't lift my crying child onto my knee for comfort, it can't fit into tight spaces, I miss the hand around my neck as I carry Nate, and it looks terrible. There is a far greater issue too, the fact Nate will be confined to his chair when out and about wherever we go. 

The only answer I can think of is to get into bed with Nate on a morning and stay there all day. 

Money money money

Eee honestly I've given this post a title which makes me chuckle. It won't make anyone else chuckle unless they had the pleasure of my Christmas play in junior school in which we wore papier mache masks ( I can still smell them) and danced in total uncoordination to Abba. 

So we are currently sat watching the apprentice. This program makes me feel so far removed from the lifestyle of these people that I may as well be on another planet. I've never been particularly motivated by money, more about "making a difference", naive yes, but that was the plan back in the day, and that was even before having Nate. Perhaps that's why I went into teaching. There's certainly not much societal value or money in it.
Nate changed things for me/us. I went from being KS3 science coordinator and assistant head of year to being parent/ carer/ nurse/ therapist. I'm not going to lie. It was a bit of of a contrast. I had tried to go back to work on a much reduced contract, however, because of Nate's frequent hospital stays and his very short life expectancy I resigned. This led to several life changing events;

- debt
- loss of our house 
- loss of earnings
- me feeling pretty shite due to a sudden lack of identity

Who was I? That's not meant to be a pretentious sounding question. I genuinely mean I floundered trying to find out who I was. I felt like I constantly had to explain why I didn't work. To justify my existence and role in this society that refuses to acknowledge the position and responsibility of carers. I struggled. I had no self worth. The money issue paled in comparison to the fact all I did was look after the kids and house. It's not what I expected from life. I was brought up by hard working working class parents and gained an "assisted place" to a top notch private girls school. I'm a bit of a contradiction, but have no regrets and nothing but admiration for the amazing women I had the pleasure to study alongside. Many have battled their own demons and struggles and fought to be where they are today. Many have contacted me to help with info, research, and support with Nate. Others are just forthright with a friendly face, cuppa tea or bottle of prosecco. There are flaws with the private school system but what I can say is we were encouraged and pushed to succeed. It was always made abundantly clear that we could do anything we wanted to. Gender was inconsequential. A world away from what we see frequently in advertising and marketing of toys clothes and games. I would love for my daughter to attend my old school for the positive attitude towards success and achievement for women which is still lacking in many state schools today, and made murky by the media and advertising. 

But what would I do if I actually had money? Sometimes I fantasize or day dream about how I could make things a little bit easier for us as a family. I'll be honest I'd pay for an overnight carer every bloody night of the week. Oh how I love sleep. It's amazing. I'd pay privately for a Physio and OT and fund every bit of equipment we needed without any need for referrals, waiting lists or arguememt about what Nate needs. I'd buy a flat/ bungalow or extend our bungalow and fund carers to support us to care for Nate when/ if he gets older. I'd fund wrap around childcare ( impossible for most SN parents) for Nate, and continue doing what I want to do, what I do for me, just me and no one else

Work

Guess who's back

Yeah yeah, whatever, so it turns out I couldn't stay away. Just shush. 

The SN blogging community has been in turmoil with accusations and assumptions regarding speaking for our children and over sharing. My blog started as a means to balance my mental health and to vent my frustrations at the world. My blogging needs have changed over time, It's become less about venting or the "injustice of it all" and more about education, access and acceptance. As I return to the blogging world it is with these things in mind. What I won't be doing is sharing anything about my daughter. She doesn't want that, and I respect that. Ultimately I need to remember that I blog for me, and no one else. 

What I must do is mention that the SWAN UK community has been rocked by the recent passing of Ethan, Rufus and Olivia, and earlier in the year by Alanna and Jack #saytheirnames, each leaving a devastating hole in the lives of their families and all who knew them. This means that three of my SWAN drinking buddies have had children pass in the last year- Liz, Nicky and Cindy. I think about them all the time. 

Many of us know, and to a variable extent acknowledge that our children will not reach adulthood, others suffer a sudden loss, neither is an "easier" path. All any parent wants is their child to be there with them. Memories are more valuable that the richest stones or the biggest house. 

This leads me on to Sally Philips' programme on Downs Syndrome. I didn't  watch it. I don't want to. Apparently it highlighted the joy a child with SN and their family can feel. It made people rethink the idea of "quality of life" but what it also did was demonise people who did choose to terminate. I'm not even thinking about those late terminations, I just can't. Although the program sounds overwhelmingly positive I have a few issues : 

- firstly I'm pro educated choice. Which means I'm basically for whatever a woman decides once she knows all of the facts around the pregnancy and birth. This means that Down Syndrome needs to stop being talked about in hushed tones as if it's the end of the world, that women should be shown how fulfilling their child's life could be, but on the flip side shown the more severe end of the spectrum and what that can mean. I have read so many posts from families of children and adults with the syndrome who feel only the higher functioning and more able individuals are talked about and shared as examples on TV and social media. 

- we need better education and awareness of special needs. As a society we are under pressure from the media to see disability and illness as a "burden". That's a hard mantle to shift. Without a broader outlook on life we can never accept difference as normal. Yes that might seem a contradiction, but it makes sense. 

-we need to start accepting that while Down Syndrome is the most common chromosomal disorder it's not the only one. There are many other children and adults out there waiting to be understood and accepted. 

- I don't think anyone should comment on who chooses to go ahead with a pregnancy and who doesn't, unless they've been there. It's not a situation you want to be in. I didn't have that choice. Thank fuck. Apparently Nate was "fine". Shows what they know. And to this day I don't know what i would have done if I did know. I can just imagine my face in hearing "well your child won't walk or talk, will be fed through a tube, will stop breathing every night and require ventilation and we don't know how long he will live for, what do you want to do?" I'd love to say I would have gone ahead with the pregnancy but if I'm honest I really don't know. Nate has changed me. The me now would have been ok with it and gone on to savour every snuggle, but the me then was a bit of a dick to be honest. I knew nothing about disability or dealing with medical needs and I would have thought I lacked the confidence to do right by a medically complex child. To be clear I value every day I have with my boy and I want everyone to know how much he enjoys life and how much he gives back. He's an absolute joy. I worry people might think we have it rough, but believe me facing losing him is far rougher. I have absolutely no regrets. Empathy yes please, sympathy no ta. 

- we also need to be honest about how difficult it is to access therapy and supportive/ respite services. I swear I thought if you were struggling that people actually wanted to help! This links back to the lack of confidence I mentioned previously. I suspect had known the huge battle we would have to access adequate services and provision for the whole family I may have thought it all beyond my capabilities. 

Anyway, so me, I don't plan for the future. I plan for now. Or maybe the next 12 months. This is an improvement, it used to be month by month, so uncertain and precarious was life for Nate. This uncertainty we live with means that assessments and funding need to be allocated without delay. Needs change over time and this must be met with urgency. Some things can't be "put off" or delayed, and there is no excuse for inadequate or incomplete assessments. We need what we need. We don't lie, we don't exaggerate. To be totally truthful we don't actually want help, but when we realise we need it, we need it fucking now. And when faced with an uncertain future we really fucking need it now.