Mother of two Wendy writes shares with us some of the wonderful ups and exasperating downs of family life with a child with a sensory impairment.
I'm Wendy, Mum to Joshua 5 and Chloe 8 and my husband is Simon (I'll leave our ages out - but for the record, feel about 98).
Viv has asked me to do a blog for a bit. As you can imagine, this won't be about a pink and fluffy perfect life. No of course not. I think she wants me to share my attempts at managing family life with a blind son and lovely daughter who of course, also needs lots of loving attention and support as any sibling of a disabled child does.......and more). And so does the husband, who I think gets very short thrift on that front.
Josh isn't just a blind child either. He is a beautiful, hilarious and cheeky little boy, who likes dressing up, meerkats, music and has a huge love of people. He loves driving over sleeping policemen and the sound of other people dropping stuff. He hates vegetables, bath letters and TV. Especially TV.
He also has a degenerative disease which very little is known about. When we were told about Norrie Disease we were told not to look it up on the internet. Of course, off I sped, smoke bellowing from my heels. Professionals then said don't believe everything you read on the internet. However, problem with this plan is that they didn't know much about it either. Stumped.
Norrie Disease we are led to believe affects one is 12 million. "Special" springs to mind.
Josh is totally blind e.g. This means if you left the biggest yummiest sweet on the table he wouldn't eat it unless you tell him. It doesn't bother him if I leave the light on while he's sleeping (my Nan still won't accept this). He's not scared of hide and seek in the dark. He's very good at this one. He doesn't get scared on the ferris wheel or walking on a high wall. He does know when I've given him the burnt fish fingers.
Annual eye check-ups go like this
(Consultant) 'Hi, how are you? Any change in his vision?'
(Me) - 'No he's still blind.'
(Consultant) -' Ok then, see you in a year.'
(Me) 'Can't wait' Byeeeeeeeeee
Things on the floor he trips over. Mind you there are things all over the floor so we all trip over. Sadly, organisation and structure didn't come to me naturally. And how does a blind child learn? Through structure and organisation of course otherwise they can't find anything. Stumped again. I am trying really hard though. I was proudly telling Josh's lovely mobility instructor about the new organised me, cane hook by the front door. Shoes under Josh's coat hook. Shoe rack organised. "What do you think, aren't I doing well?" "Yes" she said,"brilliantly". "Especially the pint glass on the shoe rack.........................that's a great touch". "Ah yes" I said, "I must have been clearing the table when the door bell rang, when the school rang" ...........why do I bother explaining myself. I am basically rubbish at structure.
So this morning, I thought I was really on top of things. Getting to school using the cane has been painful. We've had flying cane's, bent canes, canes tripping up dogs, lost canes, fighter canes, sitting-down shouting cane protests. You name it we've had it. My poor daughter has had the fragile 'street cred' of an 8 year old pushed to its utter limit and beyond.
However, progress has been made and the cane accompanies us to school now. One slight problem though is that my shoulder is about to pop out of it's socket due to Josh using me as a totem pole with his hand that isn't using his cane as a lethal weapon. My new plan…..............Josh holds my back trouser pocket in the hope that shoulder stays in socket and I can also hold my daughter's hand (yes, she does have one) and I can carry a few bags. Yahooo.
We leave the house at 8.30am. Yes, all going well. Aren't I clever? We crashed through the garden bushes (that's a tradition now), navigated a few lampposts. Didn't trip the family up that we pass everyone morning who still look utterly terified as we career towards them. And they didn't run for cover..........always a good sign. Amazing sign - man round the back who never speaks to me, was waving and smiling as he overtook me on the pavement. The local builder happily waved from his van and gave me a tonk. Yes, I thought, we can do this. When I got to the railway station I realised Josh had clear ripped the back pocket off my trousers leaving a gaping hole in my backside and my not best undies hanging out for the world to see.
The good thing about this was it made my children laugh............oh and how they laughed!
Happy week all.
Pity and Fries to Go
It’s Friday night, time to treat the kids – with a McDonalds. Readers, stop rolling your eyes please. And for the record, I do like chicken nuggets with chilli sauce and a slimline latte. Anyway, we arrive at the Drive Thru.Ok, this week I’d like to share a car experience. I have a few. From our Golf.
Kids argue over the order, we all argue over the order, I holler at the lovely voice box, they holler back, I repeat order 10x and spell Fillet of Fish………lovely, job done. We crawl on round to the paying box.
I go to pay. Chloe sticks her head out of the window. “Hello” she says. How lovely I think.
“Hello” says the very smiley lady at the cash till.
“How sweet she is” she says to me.
Ummmmm, I think. Her attention soon turns to the other child in my car: Josh.
“Ahhh, is he asleep?”
“No” says Chloe “He’s blind.”
“Oh right, he’s playing?”
“No” says Chloe “he’s blind.”
“Oh, you mean he’s asleep?”
“No” says Chloe, “he’s blind.”
“Are you joking?” she says to me.
“No”, I say, “he’s blind.” Giving my best everything’s ok smile. (I have damaged teeth doing this smile). Do I keep prozac in the dashboard? No, sadly not.
“Josh” I say, “say hello to the lady.”
There were of course many other things I wanted him to say to the lady…………but of course, I’m thinking when she sees Josh’s eyes she might get the picture. So when she sees Josh’s eyes guess what happens?
“Oh my god” she bellows, over and above the dulcet tone of “Big Mac and fries”
“THAT’S SO SAD!”
Great. So I pay and get the hell out.
“Byeeee!” I say. Then just one more time for good measure. She leans out of her cabin, practically sticks her head in the car and squeals “OH MY GOD THAT”S SOOOOOOOOO SAD!…..”
Thanks Buddie. Thankfully Josh couldn’t hear because of John Legend’s “All Of Me” whittering away on the radio. The slow version of course – which makes me want to cry at the best of times. Very apt and all that I love you for your perfect imperfections bla bla bla.
Anyway, kids don’t care because they’ve got a McDonalds. And I can’t cry because I’ve the monster of all roundabouts to navigate to get us home.Life continues.
Mental note. Shouldn’t have gone to MacDonald’s.
Burger King next time!!!!
Wow, this inclusion lark is tough. Week 2 of the holidays and here comes the day I’ve chewed nails over. A lovely day in Greenwich Park with friends and their children. A day for children to run free, kick balls, climb trees and general happy family-ness whilst parents sit down and talk about how grown up the children all are and where did the last year go etc. etc. And believe me, these really are lovely friends and lovely children..but they don’t have a child with a disability.
Chloe (Josh’s sister) is having a really excellent time. She’s really happy and joining in. And I want to be so happy that one of my children is so happy. But I can’t because my other one can’t join in. And that breaks my heart.
When Chloe was tiny an elderly neighbour said to me ‘You’re only ever as happy as your unhappiest child.’ Yes, I thought but I didn’t really think much more than that. Now I get it.
So obviously all the kids are hooning around playing football. Parent dilemma commences. I don’t want Chloe to be responsible for Josh. If she comes for Josh that’s fab. But she doesn’t. And I can’t blame her. Chloe spends an admirable amount of time doubling back on herself to retrieve Josh when he’s left standing alone wondering where everyone’s gone. Parent dilemma…………do I go and play football with them and Josh? Let’s be blunt: it’s not the best look for Josh, your 44 year old Mum attempting to hoon around in her sandals wedging Josh in-between her and the ball and then us both missing.
Anyway, Josh made up his own mind. He didn’t want me ruining his style. And he roared off on his own steam. ‘Oh happy moments, he’s trying to join in with the other children.’ And this really is a big thing let me tell you.
‘Mind the tree Josh!’ I hear a parent call out. No one saw the dog turd though. Everywhere – shoes, hands, yes, even the face as Josh’s 2nd strongest functional sense is smell. Excellent. This trip to the park is a dream. A really, really bad one.
‘Mum, something awful has happened!’ came the wail from my lovely son. We spend 30 mins in the public toilets (with no soap) trying to mend this unnecessary situation.
Anyway, when we surface, it’s off for the picnic via the climbing trees. That’s ok. I climb them with Josh. I back off and do bush peeking to make sure he’s ok. Chloe comes back for him and takes him to the tree where the other children have all moved to. Thank you Chloe, I love you. Kids race towards picnic blanket for food. Chloe attempts to race with Josh towards picnic blanket. He accidentally trips her up in front of everyone because, in his words, ‘she’s going too fast.’
Chloe thinks he’s done it on purpose and lamps him. Excellent. This day is one to remember.
Eating commences, gomp gomp chomp chomp kids ram vast amounts of food down their necks and hoon off for …………football. Hurrrahhhh. Except Josh.
Josh takes as long as feasibly possible to eat because he knows at the end of lunch time he has to try and join in with playtime again, this is what happens at school.
When Josh finally finishes lunch I lead him to the other children, rapidly picking my own brain (usually unfruitful) on how to include Josh in the football. Ahhh I see sister Chloe in goal. I ask Chloe if perhaps Josh can stand in goal with her. ‘No way, not enough room’ is the reply.
Ok, chin up desperately trying to stop Josh from feeling sad……
But, ladies and gents – believe it or not this story does have a happy ending. Just when all the cards seemed very down I remembered my lethal weapon. The Stomp Rocket!
For those of you who haven’t yet met the Stomp Rocket it’s 100% plastic. A pump attached to a tube attached to a bracket which you place a plastic rocket on. You jump on it and apparently it fires up into the air 400 feet!!
Well, let me tell you; whether or not that rocket really did reach 400 feet I don’t know, but Josh and my spirits did reach 400 feet. Because as soon as we sent the first rocket into space the game of football disbanded and Josh had a queue of children behind him wanting to have a go.
Josh got massive sensory feedback from stomping on the pump and listening to how long the rocket took to hit the ground and listening to the other children’s comments on each rocket’s launch. I got massive pleasure in watching all the other children hooning around after Josh’s rocket launches.
Yes, happy times and we Stomp Rocketed for a whole hour and Josh felt part of a game with children wanting to do what he was doing and having a really great time.
Yes, happy outing. That one is definitely going in the memory bottle.
Not that I want to do a sales pitch or anything but to anyone who has a child who struggles with ball games but can stamp their foot then invest in a Stomp Rocket £10ish on Amazon. Well worth it.
Happy summer all!
P.S Buy rocket refills as well.
The blind hotel
Haven’t blogged for a while, disappeared into the summer hols with kids but we’ve all come out breathing!
It was a lovely summer and the kids actually spent some time being nice to each other. This is a treat in this house hold and gives you that lightbulb moment ‘ahhhh, that’s why we had 2’!
We went off to the Cliffden Hotel in Teignmouth which is in partnership by Action For The Blind. A wonderful if slightly unconventional hotel where you can be exactly who you are. No airs and graces. Thundering around with canes is expected and dogs are accepted. Most of the visually impaired people there have been going for years and years and it was lovely to see visually impaired people doing normal things and being marvellously independent. They were there with friends or families or partners or they were on there own but whatever their situation they seemed happy and accepted and included.
Since being told that Josh was blind the totally bonkers side of me went into over drive and since that day I have striven to obtain evidence that blind people are happy, make friends, have relationships, families, jobs etc Of course I do know that this is totally irrational and quite frankly idiotic as I know loads of people who are not visually impaired who struggle with the above. Including myself! Shortly after Josh’s diagnosis, my obsession with whether blind people were happy or not got so out of control that it was pointed out to me that changing course and following a blind person on their journey to see how they coped at the traffic lights or how they made their choice in the corner shop was verging on stalker behaviour and really did need to stop. So I stopped. But it didn’t stop me wondering.
So Cliffden was my tonic and it was a great relief to be outnumbered by blind or visually impaired people who really seemed to be having quite a ball. And their independence was fab – they would take off down to the beach via the dog poo area and can I say at this point, deal with dog mess as is socially expected but not always done by sighted dog owners! (Don’t get me started).
I met the blind musician who frequently ditched his teenage kids because they used to slow him down. I met a wonderful blind lady who was her disabled husband’s primary carer. There was the blind couple who were heavily involved in improving disability services for their local authority whilst looking after their 3 children one of whom was visually impaired. They also gave a cracking performance at the Karaoke.
There was also the couple who spent chunks of time travelling around the atrium at the top of the stairs trying to find their way down the stairs despite lots of offers of help. Banging on all the bedroom doors around the atrium at 6am in the morning shouting ‘have you got the dog?’ ‘No’ ‘I thought you had’ ‘oh we’re lost again’ ‘where’s the top of the stair’s?’ ‘It must be that way’ ‘No that’s where we came from’ – was also an eye opener and a reminder to myself the importance of habilitation services and orientation points. And the children, whether they were visually impaired or their parents were visually impaired or both there was just so much love and caring going on in the Cliffden Hotel it was a truly lovely experience.
My kids ask to go back to the ‘blind’ hotel everyday. They want live to there. And do you know I wouldn’t mind either. It was our bubble in a not bubble world if that makes sense. Our bubble burst back at home and the sibling love seems to have taken a bit of a bashing again. This morning’s breakfast conversation went along the lines of..
Chloe; “Mum can I have a sister now please and make sure this one’s not blind”.
Josh: “Mum can you get me a brother now please and one that’s blind.”
Sure kids, and would you like jam on your toast?
A no limits holiday
The car was packed to the brim with teddies and meerkats and us: myself, Chloe 8 and brother Josh 6 who is blind. We set off to Windmill Hill, East Sussex and all set for a fun packed PGL Activity Family Weekend superbly organised by VICTA, charity for blind and partially sighted children, young people and their families. We had no idea of what to expect and as we got routinely lost en-route I was trying to banish those ‘oh ho what have I done now?’ and ‘Is this such a good idea?’ thoughts…
As soon as we arrived we were greeted by a sea of lovely and very cheery VICTA staff and volunteers. The families who had already arrived seemed settled, relaxed and very friendly. The welcome sound and sight of canes gently clopping away could be heard and that feeling of ‘everything’s going to be ok’ settled in. We were introduced to Daz, one of Josh’s helpers and a wonderfully energetic member of the PGL team who helped us transport our car load of totally unnecessary paraphernalia to our room.
The 3 of us were sleeping in a room with 3 bunk-beds – yeah no need to argue over top or bottom…….or so you would think. After unpacking we went for food and then it was time for the children to meet their groups. Josh remonstrated about the fact that it was past 7pm – his bedtime and being a man of routine I thought we may have struck a problem. But, thankfully this was not the case and we all trotted off to bed at 9.30pm having had a lovely evening of introduction games and singing. Chloe could have gone on till midnight.
Saturday morning was when the real fun and games started and this lasted for 3 whole days – Yipppeeee! As I said goodbye to the children for their first drop off with their groups I couldn’t help but take a sneaky peek over my shoulder as they departed and wondered what on earth was going to happen to them over the next 3 hours and would they need me? Well the answer was absolutely not. In fact, I’d only have cramped their style.
The children got so much out of their group activities it’s hard to list but I’ll try. Between them Chloe and Josh conquered the climbing tower, they scaled a rock climbing wall, they roved around in pitch black underground tunnels (I think Josh had a distinct advantage here), made rafts, plunged themselves into icy cold water and scaled a ridiculously tall totem pole the goal being to stand on a piece of wood on the top the size of a pizza box – whatever next?!
They got the opportunity to support each other and enjoy team work. Josh got to be with other visually impaired children. Chloe realised she wasn’t the only sister in the world with a disabled brother. They reached out to other adults who weren’t family – a big plus – and a massive thank you to Daz, Michele, Lauren, Alex and Kirsten and all the other amazing volunteers and staff without which none of this would have been possible.
All the children on the weekend, regardless of ability, were lovingly encouraged out of their comfort zones thus enabling them to conquer challenges that they would have probably never thought they could do; what a confidence booster and an amazing opportunity and memory for children to take home with them.
When I was lucky enough to catch a glimpse of the kids in action I could see they were so happy and wonderfully supported. The encouragement of their team leaders and volunteers was very powerful.
On one occasion I could hear shouts of ‘meerkat’ echoing round the grounds. And sure enough there was Josh gently swinging from his hoist, half way up the climbing tower, having far too much fun bouncing off the walls yelling ‘meerkats’ down to his helpers below who presumably were shouting ‘meerkat’ to encourage Josh to go just a little bit higher..but no, why would he change a thing when he could swing where no one could reach him whilst making them call out his favourite thing in the whole world? He’s not daft you know!
Well what happened to the adults while all this fun was going on? Saturday for adults involved workshops and listening to some inspirational Youth Speakers who had embraced and conquered the challenges that life hurls at people with a visual impairment. They were amazing people.
Then it was the adults turns to do all the things their little treasures had done. No problem, easy as pie…..right? Ok, not to go into too much detail but scaling the totem pole and balancing on a pizza box with two Dads was the most terrifying thing I’ve done after childbirth (not a great comparison, sorry!). But thank you to the President who encouraged me to get up there to accompany him on this ridiculously high and wobbling pole. He waited so long for me to get there I think he was lonely!
My name became Trevor during these days of team building! I partnered up with a Dad who obviously found Trevor easier to come to terms with than Wendy. It’s OK, I get that. We became Team Trevor and had an absolute blast. I loved my team, they were wonderful people and we laughed so much – rediscovering that we never did have a particular skills at netball but we were good at getting stuck in tunnels whilst trying to escape the rats that we were told were down there. The ‘rats’ were in fact ten children that Alex lovingly let loose in the tunnels once all four adults were firmly stuck, wedged and lost in the tunnels. Terrifying.
When it was time to say goodbye I said a big thank you to Daz and the other volunteers and Daz’s reply was one that will stay with me. He said “Thank you for trusting us with your blind son and letting me throw him off a 40 foot climbing tower! I’ve never worked with a completely blind child before.”
Well thank you Daz as Josh has never had the opportunity before to work with a volunteer who would chuck him off a 40 foot tower!!!
One of the biggest messages I took home from the Activity Break is that there is really no stopping and no limits for our visually impaired children. Providing they are given the opportunities the sky is the limit. So a huge thank you to VICTA and all the wonderful volunteers and PGL staff who made the Activity Break happen.
Here’s a picture of Josh at Victa!
For more information about Victa and how this organisation helps blind and partially sighted children, young people and their families go to: