And we danced all night to my last blog ever

So I've decided this is to be my last post. 

For a few reasons really:

The original idea of this blog was to keep a record of everything we had been through and were going through as a family. Initially for Thea- so that she could see how much she mattered through everything, how much we love her, and how we tried ( and often failed) to balance our time between our two children and do what was best for them. I had visions of being able to say "sit and read this" when teenaged years of "I hate you" and " you love him more" might be shouted at us. 

I blogged of the rollercoaster of being undiagnosed (however Nate has his diagnosis), our hospital stays ( I've even bored myself), the emotions of being mam to a wonderful special boy and his special sibling, and even our housing crisis. The truth is I'm good. The anger and frustration subsided long ago. I struggle to find time to blog and many things I just don't want to share. 

This blog served a purpose, and quite frankly kept me sane through some very dark times. But my eldest is of an age where she needs to have a say in what I post on FB or here ( everything is ran by her first). This will only increase as she gets older. I certainly don't want to embarrass her or have people see parts of our family life she doesn't want known.  Thea is fiercely proud of her brother, I don't want anyone to misunderstand me, it's more about respecting her privacy. She shocked me the other day when I took a funny photo of her by saying "don't put that on Facebook!". It made me think. 

So I'm signing off. 

I will still knock out the occasional anonymous blog for SWAN UK or Firefly, and do guest posts but this is the last time I will post as me. 

I feel really emotional. But this blog has fullfilled its role.

It's a record of what feels like a different age.

And so Nate turns five

Five years ago you would have had to wipe me up from the floor. An oozy mess of helplessness, hormones and utter despair. 

Somehow I had gone from healthy( ish) pregnancy to " have you noticed your son has some unusual features?" Followed by a list of said features and then, "we think your son has an extremely severe genetic disorder". 

The weeks that followed involved genetic tests, metabolic tests, MRI, ultrasounds, x rays, pretty much everything under the sun. All in an attempt to diagnose him. There was no disguising the fact that Drs didn't expect Nate to be with us long. I struggled. From the endorphin rush of his birth and the immediate bond I felt I was faced suddenly with a floppy non responsive little boy with an unknown life expectancy. Part of me wanted to hold a little of myself back as protection. 

Don't bond. Step back 

Irrational thoughts plagued my brain. I was stunned, shocked, and frozen. How did this happen? What did I do wrong? How could I cope with such a severely disabled child and love him completely just to lose him? The voice of reason was my husband. He was so clearly focused on getting Nate home. We knew we had to become "experts" on Nate and all his needs. We took over his cares in hospital with the aim of bringing him home. This was the game changer for me. I had to do these things for Nate. I stopped my wobble and strengthened my bond with my beautiful boy. I thought short term. About doing what we could for Nate. I didn't think about the future or what his eventual needs could be. Or even whether or not we could cope. We dealt with things day by day, even as the list of "unusual features" became longer and longer. I swear every Monday morning his Paed had noticed something new.

This whole blog has been about our journey as a family. I won't go back over what happened. I try not to think of it unless it's as a means to support other people. I'd love to be able to say, " look what he was like back then and now he's fine/fixed/having treatment", but that's not going to happen. He is complex, he is profoundly disabled, but bloody hell his smile lights up my day. 

I wish that before having Nate i had had the pleasure of knowing or working with adults or children with a profound disablility. That would have helped I think, even though every situation is different. If I could have seen joy upon accessing an activity, or where personality was shining through, that would have helped by giving me an insight into what I could possibly expect in a positive way. 

Fear is of the unknown. Without building acceptance of difference through contact we fail to teach our children to appreciate the value of life. Just because someone's life is on a very different path doesn't make their journey any less valuable. 

Phrases like " ah well I don't mind if it's a boy or girl as long as it's healthy" grate on me. You will mind will you? What on earth does that even mean. The truth is you will love your child no matter what even if you child isn't healthy. It shouldn't be a deal breaker. You don't get to return it if it's faulty after all. 

Where I do think things could be improved for parents and children is with regard to that gap between leaving hospital after birth and being able to access services like portage. You might ( will) find your lives upside down with appointments and home visits, but until ( or if) you can access portage nothing focuses on the learning development of your child or understanding your child until they start school. I remember sat amongst a floor strewn with baby toys, (none of which Nate could play with) thinking well what can I do with him? Luckily we had a good portage led group and portage worker ( after a long wait on a list).

I am aware of my rambling. But I am honestly working towards a point. And it's these top ten things I'd wish I'd known 5 years ago. 

1- You will love and fight for this child. End of. 

2- Drs aren't always right. Question. Query. Challenge.

3- there is no shame in asking for help. Don't put off requesting assessments for respite until you are on your knees. Everything takes time. And don't feel guilty. Just don't. 

4- it's not a competition. Avoid " my child is more disabled than yours" scenarios in support groups in real life and online. Your child may not have health needs but behaviorally may have you on the edge.  

5- support groups. Find them. They differ area to area depending on funding available. You will make friends. 

6- Don't be afraid to block and report any nastiness. Just because someone has a child with a disability or additional need doesn't mean they are a nice person. Don't put up with any crap. 

7- there are a huge number of charities who will fund equipment, therapy,  holidays and household stuff. Utilize them. Chances are you are working less and stoney broke. 

8- accept when "standard" furniture and supplies are no longer sufficient. I cried when we got our SN pushchair and bed, and then bath. I seem to cry a lot... Never mind. Anyway they are life changing. Don't struggle on to prove a point or make things more "normal".

9- equipment. You will adapt. Seriously. 

10- access services to support any siblings. Young carers, sibs days at hospices, even just helping them to understand their sibling. 

And Nate's birthday? Well he's having a bowling party with his pals tomorrow. He's been to his sisters football presentation tonight with a dark disco afterwards- flashing lights, strobe lighting etc, I suspect Nate thought that it was his party 😳 oops. 

The change

At some point recently my gorgeous baby boy turned into a little boy. This feeling that he is no longer my baby has snuck up on me. Did I blink and he changed? Or is it my attitude towards him that has changed?

I look back at his baby photos and no longer focus on how hard things were in the early years, but instead on the challenges we face today and how different they are from back then.

In those first few years if you took away the medical equipment and lack of tone, Nate wasn't that much different to other tots. I could give him a bottle ( kind of) and some mouthfuls of food that he would slop about messily. It was totally normal/ acceptable for people to give him a cuddle and hold him like a baby, to talk to him like a baby. 

And now?

He might seem to still be at the same developmental level as a baby, but you know what? He isn't a baby. Nate is a profoundly disabled little boy. Actually he's not that little either to be honest. People can struggle to know how to interact with him. I understand why. It can be confusing. But it's important to recognise he isn't a baby. I waffle on at him about everything under the Sun, conscious of the fact my non verbal son will never reply. It's unlikely he understands half of what I'm saying, but it's more age appropriate ( the baby talk went out the window a long time ago) and if you give him a chance he will reply to questions with sounds of affirmation. I thank intensive interaction at school for that. Most of his toys are of a sensory nature. Nate lost interest in baby toys which was good (they had started to make me feel uncomfortable) so we became a bit more adventurous in what we would buy him. We've Spider-Man lights in his room, and comic book wallpaper which is bright and colourful. It's all such a contradiction, however, I've just bought the most amazing bouncy chair for his birthday. It doesn't look like the baby version, but there's no hiding it's design origins. For his birthday this year ( his 5th) we are going bowling. Which he loves. This is a recently discovered accessible activity for Nate which we all enjoy ( mind I'm not entirely sure how he finishes better in games than me...) 

The other big change as he get older is in his medical issues. The first few years were plagued by scary hospital admissions each time he caught a sniffle. Huge amounts of oxygen would be needed combined with extra time on his BIPAP. Thankfully these occurrences are few and far between now he's older. However things that were more manageable with a small floppy child are now really difficult. Manic thrashing, sleepless nights, pain, 

honest. 

Review- Neckerchew by Cheeky Chompers

A bit about Nate for those who aren't familiar with this blog

My son is profoundly disabled. He has a very rare genetic disorder called ATR-X. For him this presents as being non mobile, non verbal, visually impaired, requiring non invasive ventilation at night, and just generally being amazing.

Using bibs

In the SN community bandana bibs are a big thing. Many of our children are droolers and chewers. We need big sturdy well made bibs. 

Most of us buy online from small fb businesses, and some crafty parents make their own. This allows us to choose the fabric we want. You need to bare in mind that our children aren't babies, even if we could find bibs in shops that fit; chances are they wouldn't be made of age or interest appropriate fabrics. 

Bandana bibs can be expensive and vary in quality.  

What makes the Neckerchew different?

We, and by we I mean Nate, have been trying out the larger Neckerchew by Cheeky Chompers. 

http://cheekychompers.com/shop/larger-neckerchew

The fit is excellent and the bib clearly very well made and absorbant. What makes the Neckerchew so different, however, is the rubber chewy triangle. The idea is that it gives the child something to chew on. Nate uses his mouth for sensory exploration, and although he hasn't ( yet) managed to put the chewy part in his mouth himself I suspect he will try. He also grinds his teeth excessively and it has been useful to have the chewy bit right there when I need to give him something to mouth on. 

Out and about

I have lost track of the positive comments made by other parents, teachers and health professionals about the Neckerchew bib Nate has been wearing. The general consensus is that is looks great and has a useful function. 

Are there any negatives?

It doesn't have waterproof backing which many excessive droolers require, as they can soak through bibs and their clothes. However the bibs are thick absorbant fabric and we didn't notice any issues with this respect. 

Some people will find the price at £12.99 off putting- but you are getting a good quality bib and chew toy in one.

In summary 

I think they are pretty great to be honest and will be will be purchasing some more. 

 

Surviving the zombie apocalypse

Having a child with a large amount of equipment could prove difficult during a zombie apocalypse. I'm sure this is something you've thought of as often as i have. 

What do you mean no? 

Those of you who know me in the real world (as opposed to the virtual one) will know that I love science fiction, fantasy and horror. But nothing holds my attention more than tales of survival in a post apocalyptic world. It doesn't have to be zombies mind; natural disasters, epidemics and alien invasions all float by boat too. 

But what is it that captures my imagination?

Is it the resilience of human nature in difficult and life threatening situations? 

Could it be the will to survive and carry on inspite of overwhelming odds? 

Or how people with completely different backgrounds band together?

I'm sure some smarty arse psychologist or counsellor would point out the links to what we have been through as a family but quite frankly what I enjoy is the escapism. It's probably the same reason why I *cough* occasionally watch Geordie Shore. Whether or not the escapism is Michonne and Rick kicking zombie butt ( I love me a sword wielding badass), or the total end of the world stress and horror of not having your nails and tan done, and seeing someone tash on with the person you fancy. Both scenarios are so removed from everyday life that it's... well it's bloody great. 

I don't enjoy hospital dramas anymore. I've spent too long living in one. Well actually I still love Grey's Anatomy, but that's because I have an almost unhealthy interest in the lives of those working at Seattle Grace. When you think about it there are similarities to apocalyptic situations - the ferry sinking, explosions, floods, fires, buildings collapsing, and of course the plane crash and subsequent fight for survival. I've still not got over the death of Mc Steamy if I'm honest. Sob. 

But back to my original point. Zombie apocalypse. Every time it looks like Nate needs less kit or meds my inner "prepper" thinks "right that's less to carry, find, or bash zombies out of the way to get at". We would move faster without a ventilator, suction, and oxygen, and how the hell would I charge them? 

There's a reason I haven't seen anyone with a physical disability in "The Walking Dead" ( apart from people who have chopped off a limb to prevent zombie infection spreading of course) and it's not because they aren't an inclusive show

 ( which they strike me as), it's because, let's face it, the wheelchair users have probably been eaten. 

This, clearly, is problematic.

I would love so much if Nate could manage to walk at some point. Many children with his syndrome do and although he seems to be severely affected by ATR-X I won't give up hope. Also it would be highly beneficial in any forthcoming "escaping from zombies" scenario. Nate could probably give them a challenge in the biting stakes anyway. 

So what do we ( as in Nate) need to aim for? 

-less meds ( would need scavenging) 

- less battery ran equipment to charge ( would need to find some sort of safe community with renewable energy source)

-less oxygen dependancy ( although cylinders could possibly be used as a weapon) 

and oh crap I forgot about blending food! What about my vitamix? 

As you can see it's enough to keep anyone up at night.

There are three dreams I've had that stayed with me and scarred me. Just three. I don't dream very often (that I remember) which I conclude is due to my lack of sleep, and infrequency of deep sleep. These dreams left me shaking and sobbing and I think about them often. These are: the one where Nate walks and runs about happily and then I wake up, the one where he says he loves me, and the one where I'm stood holding him in the middle of floods after storms ( and I think a volcanic eruption) have ended with no way of getting him to safety. I can still feel that clench in my stomach of helplessness. 

The need to protect your child is a strong one. There's nothing quite like it in this world. It gives you the energy to fight on and always try to make the right choices. The right decisions for them. Which are not always the easiest for you. 

We all wish for our childrens lives to be easier in terms of equipment and medicines, not because using these things bother us ( err anymore) but for their health and survival. We want to take away their pain. I want Nate upright and mobile, not because lack of disabled access to places boils my piss, or I can't "deal" with the idea of him using a wheelchair, but for his circulation, muscle strength, wellbeing and happiness.

Ability to outrun zombies is an added bonus. 

Catching up

I've not blogged much lately, and by that I mean not at all. 

I haven't felt like writing anything humorous, or vaguely humorous about life with Nate as our SN community has been rocked by the passing of several children we knew well. 

I haven't felt like writing about home life as I've been working and quite frankly it's bloody chaotic and hard.

Then there's Nate's health. Which is all a bit up in the air. I'm not sure what's going on. He had an odd turn at school in December going blue and needing oxygen. I've had to put him on his bipap early a few times due to odd unresponsive floppy episodes, and he's been a lot more "seizurey"- if that's even a word. We seem to have a diagnosis of abdominal migraines which explains his cycling of pain and stomach issues, and then we have just learned Nate needs another op to find a testis that has wandered off ( again). I suppose I've not been sharing about him ( and us) because I'm back in the public domain again. Out from the rock I was hiding under. Teaching your children science again. I was toying with shutting the blog down altogether. Did I really want teenagers knowing about our lives and how complicated it can be? Sharing my photos? Maybe taking the piss? Could I cope? What is appropriate? I came to several conclusions... 

1- no one can pronounce my surname let alone spell it so the chances of anyone accidentally coming across this blog are slim

2- disability awareness is a good thing

3- I'm less sweary than I was and removed several posts when I went public on Facebook. I will have a good look through my posts anyway and hide anything that could be deamed inappropriate. 

4- I don't shy aware from talking about Nate. I don't think I've come across a class yet that aren't flipping nosy and want to know various things. Why are they obsessed with my age, number of kids and am I a "proper" teacher or one just learning to be one? Where have I worked? Do I know their mam? Is my tattoo real? How old are my kids? You get the idea.

5- Nate unbeknownst to him has so far taken part in lessons entitled " when breathing goes bad" and "inheritance of genetic disorders" complete with a selection of photos and positive spin, kind of. Oh I've just had a thought -aspirating ng and gtubes and testing pH using indicator strips will fit in with acids and alkalis... 

6- I haven't met a teen ( yet) that hasn't felt rubbish when I've asked them not to use the words "retard" or "spacka" as I have a lovely boy at home who could have words like that used about him. 

7- NO one reads this anyway 

8- I'm proud of my kids. I'll happily bore anyone to tears talking about them. So there! 

Does that make sense? 

Out and about

The days are getting longer. 

whoop! 

This means, for us at least, a return to family days out.

We try to make an effort to spend time together as a family when we can. The pressures of life and caring can lead to stress and tiredness. So sometimes, even if we don't feel like it, we drag ourselves out.

We then need to think about where to go. This is the tricky part. With a super active 8 year old and a profoundly disabled 4 year old wheelchair user finding something for everyone can be difficult. Throw into the mix a distinct lack of changing facilities in the majority of visitor centres and attractions locally and it's no wonder many SN families end up staying home.

There are several places we love to go in the North East. Where staff are friendly and accomodating, and they have adequate changing facilities.

 So I thought I'd share. 

Seven stories http://www.sevenstories.org.uk
A story book haven. With interactive exhibitions, story time and dress up in the attic, some sort of making activity downstairs, a bookshop and cafe, seven stories is a lovely place to visit. It can get very busy though especially with only one lift. We tend to go for opening time or much later on. Lately I've noticed "relaxed" events taking place for young people with LD or autism. 

The discovery museum 

http://www.twmuseums.org.uk/discovery/visiting-us/access-information.html
I'll admit it, i love museums. They are so much more interactive nowadays you get to touch stuff! :) The bonus of visiting this museum is that there is a huge family toilet. Let's all wee together! Complete with changing table. I actually squealed when I saw it. 

The Alnwick Garden.

I'm not sure that there is anything better in life than the Alnwick garden with family on a sunny day. Super soakers, tree houses, activities for children, and an amazing garden to explore. I felt disappointed that I couldn't find anywhere to change Nate and had a bit of a disaster on the floor of our WAV. I have since found out there is a large changing room with bed near the gift shop. This will make everything much easier and less stressful when we visit this year
http://www.alnwickgarden.com

GRRRRRR

A typical family day out might include a farm. However I have to find one in the north east with some sort of changing table. This means a short visit and crossed fingers. We love the beach, especially the Northumberland coast, but I don't know of anywhere that has a changing table. I'd love it if anyone could point me in the direction of one especially around Seahouses or Bamburgh. 

While the Centre for life, the Great North Museum and Beamish Museum have disabled toilets and are fun to visit, a whole section of society will find visiting difficult without a long enough bench or table to change on. The idea of changing Nate on the floor disgusts me ( never mind hurting my back). That's if there's enough space to do so. Part of me is quite relieved he doesn't understand the indignity of changing on the floor. But I do. 

The frustrating thing is that the simple addition of a fold down changing table in disabled toilets would help immensely. Some places have huge disabled toilets and you look at the wall thinking I'd know what I would put there. 

Eventually we will be limited to visiting places who have hoists. 

I've written a little something for firefly garden

http://community.fireflyfriends.com/blog/article/when-did-this-become-so-normal