Reasons to be Cheerful about Undiagnosed Children’s Day #UCDsuperhero

My daughter is undiagnosed. She is no longer a child in age, but I still feel a bond with all those families who are wondering why their child is different and desperately searching for answers. The current thinking among some disability communities is that you should just look at your own child and ignore labels, but that presupposes that every parent knows what to do when faced with a barrage of unexpected medical, physical, intellectual, behavioural, and sensory differences. Most parents struggle at times with their typical children, and few would criticise them for consulting parenting books and media experts for help. So it’s surely understandable that when you have a disabled child, you want answers, you want a diagnosis, you want a roadmap, you want tailored advice, and you want to find your parenting tribe. And today is Undiagnosed Children’s Day to raise awareness of the additional unique challenges of raising a child with no diagnosis.

I’m still searching for a diagnosis and I enrolled my daughter  in the DDD project a few years ago. No answers yet. But it’s not something that really worries me at this stage. I’ve learned that you cannot predict the future, no matter how much information you have, or how hard you try to control it. I’ve also learned that no manual or advice will ever be guaranteed to help your child, even when they do have a diagnosis. I know how hard it is, but it will be easier if you can find a way to let go of your expectations and go with the flow instead. My daughter is proof that life goes on and can be wonderful too.

While my daughter has severe to profound physical and intellectual difficulties, she is healthy and happy once her needs are met. She’s a joy to be around, and has found her place among a group of more able young adults in a day programme nearby. She has a busy life in the community at weekends.

Thanks to the much maligned Facebook, I have a big network of other parents living similar lives to myself, some with sons and daughters a little like mine. We face similar challenges and can support and advise each other. There is an organisation for families living with an undiagnosed child called SWAN UK (open to families in Ireland too) and it also provides help, resources, support and a community. So you could say that we’ve both found our tribe too.

21 years after that tiny 875 gram preemie baby took her first breath, she is very much alive and loving life and spreading happiness all round her, and despite the lack of a diagnosis, I am now confident that I can meet her needs, once she and I get enough support. So many of my worries about her have been melted away by her beautiful smiles. She really is a #UCDsuperhero and that’s my reason to be cheerful for this week.

Undiagnosed Children's Day 2018
More reasons to be cheerful over at Lakes Single Mum.

 

 

 

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She’s Gone

And just like that, she’s gone. Twenty five years of parenting gone in a flash.

Bags hanging at every angle, squeezing awkwardly through the porch door, keep cup in hand, out into the grey early morning light.

Heading away to begin a new job.

There was planning, shopping, grumps, nerves, anticipation, a hug or two and a final goodbye.

She’s left behind a well-used Tassimo, a huge collection of plastic food containers, bags and bags of old clothes that she no longer wears but cannot bear to throw away just yet, and an empty room. I will have to get used to that.

My first born taught me to become a good enough parent, she taught me that parenting is fun and frustrating by turns, rewarding and exhausting, transforming and fulfilling. I made many mistakes, that she teases me about now, but said nothing about back then.

And of course I’m going to miss her, especially the chats we had every evening when she arrived home from work, bursting to tell me all about her day. But I’m not sad. This is the natural order of things. This is how it’s supposed to go. This is what all those years of parenting were for. She’s launched herself into the world. She’s chosen her big adventure. I know she’s going to pour every ounce of energy and determination into it. I know she will succeed in making her mark.

I love her and I’m proud of her, and also she’s back on Friday for the weekend ….

Megan as a toddler

 

 

Reasons to be cheerful 20.4.18

I almost stopped writing these posts: I’ve been doing them for about 9 years in different places, and I thought you might be bored with them at this stage. Especially as there is definitely repetition – after all, my life is not exactly exciting any more!  Yet every post still seems to get a good reaction, so here we go again for another week with some daily tidbits…

Friday: B may be grown up, but it’s important to get her out of the wheelchair every day. So floor time is still part of the daily routine. And on Friday I remembered to put her on her tummy, which helps with her head control: I haven’t done it in a long time, and luckily she enjoyed it.

Saturday: Chatting with other parents in the lovely garden of the Carmichael Centre in Dublin while our teenage sons and daughters attend a therapeutic drama session. Best of all, B was happy to join in.

Sunday: Doing the 10K Great Ireland Run in Dublin’s Phoenix Park with my pal Lisa (and clocking up 31,400 steps over the day). It was wet, cold, windy and wonderful!!! A 3 1/2 hour escape from all my worries and I look 10 years younger. Even in a bin liner 😂.

Me collage Candi 17.18
Left hand photo taken at Christmas when I hit rock bottom with stress and exhaustion

On a more serious note, it shows the value of respite, and how difficult life can be without it.

Monday: I discovered a new season of my current favourite TV series: Marvel’s Agents of S.H.I.E.L.D. Please don’t judge me, it’s a little bit of escapism for an hour after B is in bed – and I suspect I may view Coulson as a surrogate father figure 😂

Tuesday: Zumba 💙

Wednesday: The arrival of sunshine meant I got some work done in the garden.

Thursday: I rewarded myself – and the rest of the family – with cake following a painful physiotherapy session. I have to get my shoulder problem fixed as it’s preventing me from doing some of B’s essential daily stretching exercises.

Friday: A morning meeting that promised much. Now to see if it delivers!

Head over to Lakes Single Mum for more reasons to be cheerful.

 

Reasons to be cheerful 13.4.18

Shoving my Pollyanna hat firmly back in my head, here’s a few reasons to be cheerful…

…I fixed the TV screen. It was infused with a brilliant shade of pink. My disabled daughter thought it was pretty, but it rather spoilt some of the programmes I enjoy while I’m seeing to her needs.. (Hint: it was actually easy to fix 😂😂)

…When friends ask ” if there’s any way we can help”, and you know they really mean it.

…I had to go to the dentist to order a new mouthguard to stop me grinding my teeth away to rubble at night (carer stress) and not only did he clean them, but he managed to remove a little brown streak on an incisor that had been bothering me for years.

…I finally tackled my shoulder pain and went to a sports injury clinic where an hour of lying on a physio table and submitting to needles and deep massage felt like pampering. As I’ve said before, it’s amazing how your perspective on things can change!

…B and I went to nearby Farmleigh House recently, somewhere we’ve visited many many times before. It really is a magical place, so to make it more entertaining for me, I began picking out features that fitted classic children’s stories. So, ta da, I give you Rapunzel’s Tower, Treebeard (an Ent from The Lord of The Rings) and Professor Kirke’s house where Lucy found the Wardrobe that led to Narnia….

Check out more reasons to be cheerful over at Lakes Single Mum.

 

Nostophobia

Nostophobia is the fear of returning home. Okay, okay, so I’ve been self diagnosing again, but without any meaningful help, it really is up to me to try and work out why I’m finding life so difficult. The why is the first stage in tackling the problem.

You see I had time to think today. I was able to leave the house for an extended period – 4 hours – during which time I went to my weekly Zumba class, and then flew drove very fast (but not faster than the speed limit) to Newry to post a parcel that I was unable to post in Dublin. Don’t ask. Apparently lots of and lots of new restrictions have been brought in since I last tried to send a parcel anywhere. And the price has gone stratospheric. The cost of the diesel for the trip was probably funded by the difference in postage between Dublin and Newry, *sigh*.

Anyway, I’m digressing. As usual. I know have a bad habit of trying to explain everything, whether you’re interested or not.

Back to the Nostophobia. I’d never heard of it, but it fits some of the issues that affect me. After an extended period away from home today, I began to feel normal again. Able to function, talk properly, drive safely, and make sensible decisions.

That all changed when I walked in through the front door, and my anxiety levels immediately went off the scale. I always said that this house would be too much for a domestically challenged person like me to manage on my own, and so it has proved. On top of that I am now caring for two young adults with conflicting needs, and coping with the ever mounting pile of household and disability administration. My ‘to do’ list just gets longer and longer, and that’s without even considering the stuff that other people do, like switching utility providers to save money, redecorating or taking up knitting!

When I’m in the house, I’m constantly under pressure and constantly on edge, there’s so much stress here, and within these walls are so many bad memories.

It’s another reason to look for a bungalow, as a fresh start might be just the cure I need. I want to say no to Nostophobia and yes to a home where I can breathe a sigh of relief when I put the key in the door. Where my home is a sanctuary, where I can relax and feel safe.

New house, new start, new me… Sounds good, dontcha think??

 

What’s It All For?

Everything is a struggle again. All the juggling, dealing with the on going stress of the problems I’m not writing about on here, trying to put my positive face on in public. The weeks slide by without progress or resolution. I feel my family has been abandoned, and I know so well that I’m not the only one.

And if I can’t write about the only topic that consumes my thoughts, how can I write at all?

I just haven’t got the heart to write yet another cheery post about our Easter outings. I planned to, I really did. I even took the photos and saved them in a little folder on my desktop. All ready to go. I might even give you a sneak peak later.

I was brought up to believe that I could follow my dreams, achieve whatever I wanted if I was determined enough, and of course those beliefs were backed up with the support of a cradle to grave welfare state: you paid into it when you were working, and used the services when you needed them. You earned enough to be able to buy a house, you could get a mortgage because your job was permanent. It may have been pensionable too. The security this gave people of my generation is impossible to overstate. But even for us, it’s starting to falling apart, just as many of us need the services we thought we were funding through our taxes when we were younger.

Perhaps it’s better that my children have learned the hard way that life is mean, life is tough, and you have to make your own luck, that the world is becoming a place where one needy group fights another for scarce resources and publicity. Except that resources are not scarce at all. The world is more wealthy than it’s ever been. But those who have the wealth are reluctant to share it with others.

I wish I could accept my life with grace, as so many others do who are dealing with far more difficult situations, and accept that it may not change, because that’s the way the future looks. But I was always greedy, I always wanted more out of life. More and then MORE again 😀. But it feels as though I’m getting less and less, that I’m trapped in a cage, partly of my own making. Yet people still ask me where I’m going on my holidays, even though I haven’t had a foreign holiday since 1996 (not a typo). People still ask me about respite, even though my disabled daughter has had only a handful of days over the years and none since 2015. My other qualifying child has never had respite. People still ask me how work is going, even though I lost the job I loved during the Economic Crash in 2008. People assume I get lots of support, yet the last time I felt that someone was really sharing the load was summer 2011 during a weekend at my Dad’s house before he succumbed to his final illness. Life is about to get trickier too, as my eldest and only non-disabled child begins a new job away in two weeks, though she may be home at weekends.

So I am finding everything very difficult once again, but I didn’t want this blog to become a moanfest. There are too many mixed messages on mental health for me to feel comfortable sharing my worries all the time:

Avoid negativity, they say: and I don’t want you to feel you have to avoid my blog.

Cut negative people out of your life, they say: yet I would hate for my friends to feel they had to do that to me.

Tell someone your problems, they say: yet even counsellors need counselling to cope with what they hear from clients, so who would want to burden their friends?

I heard a desperate woman on the radio in January who was facing repossession of her home and she told no one of her plight, “because everyone has their problems”.

Yet we’re told it’s good to talk…

Some people manage to talk about their problems in a way that makes you feel sympathetic, makes you feel privileged that they chose you as a confidante. Some don’t: I’ve called it emotional dumping, when someone pours out all their problems to you, and they feel better afterwards, but leave you feeling stressed and exhausted. Though airing my problems usually makes me feel worse. Except on here, for reasons I don’t understand.

The Government tells us to eat healthily, take exercise, switch off our phones etc as though our mental health is entirely within our control, and basically our responsibility. In fact many people struggle with mental health issues as a result of Government policy. Medication and counselling are pushed on people, yet they just deal with the symptoms, not the cause, which is often the lack of state services and support!

All I can do is keep going, doing lots of self care, even when I don’t feel like it, even when it feels like just one more thing on the desperately long ‘to do’ list. Even when I wonder why I am bothering at all.

So what’s it all for? I’m lucky that my disabled daughter’s zest for life, and love for those who love her give me a reasons to drag my weary ass out of bed every day. Because I am tired, physically, mentally and emotionally. But you’d keep going too, wouldn’t you, for this?

Bronwen in Farmleigh 2018