How can work, work?

As my children get older and school looms on the horizon for the youngest my thoughts frequently turn to returning to the world of work. I haven’t had employment since taking voluntary redundancy whilst on maternity leave with J. It was one of the few good things to come out of having our first child as the credit crunch hit and gave me the opportunity, that we otherwise would not have been able to afford, to be a stay at home Mum. As it turned out this was incredibly fortunate,  with no recognition of his disability until age 2 J may have been badly impacted upon by being placed in child care. As a passive, contented and non mobile child who wasn’t recognised as having additional needs he could have easily received far less attention than he needed. Rather than intense (desperate) all day interaction he got from me. So I must make it clear from the beginning am ever grateful for the fact that I had the opportunity to choose not have paid employment!

Fast forward some years and situation has changed,  financially we do need me to work and once our youngest child is at school I really don’t need to be home all day. But what to do?

So I began making a list of the working conditions that would be essential for our family unit to function and that’s when I realised that there would be practically no jobs out there that would fit the way our family’s life is structured around the needs of J.

1) Common to all parents of a child with a disability we need to have time off to fit around appointments;  appointments that are not always easy to rearrange without hugely increasing waiting times. Any employer would need to be flexible enough to allow you to swap shifts or make up hours at other times, simple in theory but when it’s several times a month many workplaces would not be impressed.

2) Our son travels some distance to school on local authority transport provision.  He loves his bus journey. His driver and escort are an important part of his day and he just adores them. Yes, there’s a but coming now, BUT the transport rules state that a child may only be picked up and dropped off at their home address and that transport will only be available at the end of teaching time and that transport won’t be provided to allow access to after school clubs or wrap around care. So in a nutshell someone has to be at your home address to meet them.

So now you have several options: you  could consider a childminder, but are they going to want to traipse out to your home with any other children that they’re minding and wait on the pavement for the bus to arrive?
You could use any direct payments you might receive to pay a Personal Assistant to be home to meet your child but social services will tell you that direct payments are for respite, not to allow you to work.
You could employ a nanny, but let’s face it the cost of that is going to be prohibitively expensive for most of us.
Ask your parents. There must be many many grandparents pressed into this role, who help for their children’s sake. How many of them reluctantly or at the expense of more pleasurable grandparent/grandchild time?
Hmmmmm, what’s left? Not much eh?

3) The summer holidays. Now, I know that all working parents have problems arranging child care for the summer, but on top of the normal issues when you have a child with a disability you have to consider all the following. There are no or few play schemes/activity camps for your child,  those that existed have reduced significantly due to recent budget cuts. If your child has significant additional needs it’s not that easy to arrange grandparent or family friend cover, much as they may adore your child they may just not be equipped to cope with them on their own for long stretches of time. Back to having a nanny being the only option again then.

So after consideration of all of these and feeling slightly despairing about the restricted options. My conclusion? Well two choices:

Hire a nanny

OR

Find a job which can be very flexible about appointments,  where I can be home by 4pm and work term time only.

Any ideas?

The problem as I see it is that it is cheaper to pay me (and many others like me )the paultry Carer’s Allowance of £59.75 a week, than it is to address these issues nationally and create working practices that allow parents in our situation the opportunity to work. The fact that they stop paying you any Carer’s allowance if you earn £5200 a year shows the monetary value attached to the work carers carry out. Work that fits the needs of the family for parents in our situation is complicated and hard to come by, so far our society has chosen to solve this problem by paying a tiny benefit rather than finding ways in which parents of disabled children can be supported to make employment possible.

I put it to the Government that some honesty is needed here. You say you want everyone to work who can work, you need to ‘fess up and say that this excludes certain groups of people who you’d rather stayed at home because it costs less. But that wouldn’t make a very good soundbite would it? I imagine some of the stalwart Tory voters might not really warm to the idea of encouraging people to stay on benefits. And then people might start asking for things to change, and we wouldn’t want that now would we?

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Sensory Hidden Treasure

In our house we love any sensory hidden treasure activity and so reading a recent post at The Imagination Tree about using playdough surprise eggs made me want to share how our similar activity can be used in a home therapy program using Theraputty.

For some time this has been an aspect of our Brainwave program to help improve hand strength and fine motor skills. It’s an activity that appeals to both my children and this is always an exciting find when you have two children with very different ability levels and interests.

We have a range of small toys so that I can vary the treasure and then I can spread out a lump of theraputty and hide the treasure within it.

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The advantage of theraputty over playdough for children with disabilities, or indeed any child who needs help to develop hand strength and control, is that you can vary the firmness of the putty and increase it as your child becomes more able. Theraputty is fun to play with too ( my younger son calls it “special playdough”) and it offers a different sensory experience to playdough. Theraputty can be stretched into long strings and squashed together you can form bubbles to pop, much like the silly putty that was a playground craze when I was small.

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These stretchy strings are very funny

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Success!

In our house this is a supervised activity due to the small sized toys, the need to assist with the long strings that are pulled out and to offer turn taking when your child becomes demotivated if it becomes too challenging. However I find that both my boys are happy to play this regularly and enjoy hiding things for each other to find.

A One Day Holiday

It’s a quarter past nine at night and I’ve just sat down. I’ve been up since 6am. And yet, here I am about to write a post on the importance of taking a break! I don’t want this is be a moan post, I don’t want this to be a post that reads like I’m saying I’ve got it harder than anyone else. I haven’t. Jacob may be hard work but he’s healthy, my husband may work away from home Monday to Friday but he comes home at the weekend and I get a lie in. But it is hard, and there is very little let up, breathing space or relaxing time.

I think it’s probably important for all parents to sometimes have a bit of a break from parenting. I think everyone needs a bit of me time and head space, right? Some might get this through their job, others may go out in the evenings. My situation is though that Jacob (and Harry) is my job as well as helping out a bit in my family’s business, with Jacob sleeping so badly it’s not really possible to use babysitters so my options to get a break are extremely limited.

We’ve recently though just had to most relaxing day and it was so fantastic I think everyone should have a day like it. Maybe, this sort of day should be on prescription, one per person per year or something. It would do us all good I think!

So when my parents bought my lovely husband and me vouchers for Bedruthan Steps spa for our birthdays I was massively over excited. Not only down time, but a whole day out. Not only a break, but a chance to spend time with a husband I see far  too little of.

As it turned out, it was more amazing than we could have dreamt. The day came, it was hot and sunny we drove north from our home to a place of the North Cornwall Coast that we had visited on our first holiday together 15 years ago. We had lunch together, we could chat uninterrupted, we weren’t constantly telling Harry to sit down and clearing up spilt food and helping Jacob to have a drink and if that wasn’t blissful enough, we ate our lunch looking at this:

Mawgan Porth from Bedruthan Steps Hotel

Mawgan Porth from Bedruthan Steps Hotel

After eating we lazily walked down to the spa and spent several hours in massive jacuzzi staring at the sea and reading on sun loungers outside, in the sun, getting a tan! Having a swim and using using all the other facilities. It was like going back in time to our pre-children holidays. Just magical.

After our spa session we just thought we’d carry on the day as if we had no responsibilities and could do whatever we wanted. We went for a drive and a walk, no need to worry about taking a potty and whether Jacob’s buggy would make it along the path. We could just do it. We stopped, took photos, no one said they were bored, no one ran off and needed to be told off!

Wild flowers at West Pentire

Wild flowers at West Pentire

Buoyed by our happiness, relaxed and at ease we walked in the door, to find that Jacob had just had a coughing fit and been sick on the carpet. He just started to go down with a cold. Back to reality with a bump! I’d like to say that this break has made me more able to deal with things on a day to day basis, that I’m less stressed. Of course one day isn’t going to really do that. But it was fantastic and just looking at those pictures, I feel on holiday again….

 

Liebster Award

I was very shocked this morning when I found out that the lovely Mr Boos Mum at Premmeditations had nominated my blog for a Liebster award. After being all shocked and thanking her the first thing I did was find out what the blinkety-blink a Liebster award was. Turns out it is an award given to bloggers who have less that 200 followers and is a way of new blogs being found and (hopefully) a way for new blogs to find new readers.

Liebster

 

However there were strict instructions that had to be followed in accepting the award and these are:

Give a link back to the blog that nominated me (please see above!)

Answer some questions set by Premmeditations

Reveal 11 random facts about myself

Nominate 5-11 new blogs

Set them some tricky and revealing questions

Tell them I’ve nominated them

So here goes:

1. What brought you to blogging in the first place?

A kind friend who writes a brilliantly funny blog over at Mama Bear With Me allowed me to write a guest post for Undiagnosed Children’s Day. Jacob had no diagnosis at the time and I had found a lot f support and friendship from the other SWAN parents. I enjoyed writing the guest post and subsequently I received frequent cajoling from friends telling me that that  I should keep writing. Basically, I caved to peer pressure.

2. What keeps you blogging?

Some weird inner drive that makes me think that once I’ve started something I shouldn’t give up on it and that I have to get better at it. Despite the fact that I really could use the time spent blogging for other things, I really enjoy it and find it helps me process the things that are happening in our life. Free therapy.

3. What makes you laugh?
Lots of things, my husband and my children frequently make me cry with laughter. I like to see a funny slant on things.
4. Facebook or Twitter?
Oooo hard one. Just can’t choose. I’ve met great new people through Twitter but Facebook has been invaluable for me as I recently moved from one side of the UK to other other. Facebook has allowed me to still feel involved in the lives of my friends hundreds of miles away. Both make me feel less isolated for which I’m very very grateful.
5. What famous person would you most like to go to dinner with?
Stephen Fry would be interesting to talk too.
6. If you could go back in time to any period when would it be?
I would only go back in time if it was guaranteed that I wouldn’t be poor, basically I think in the past most people had pretty shockingly short, hard lives.  At a push I’d pick 1920s, but only for purely shallow reasons.
7. If I could plug you in Matrix-style and teach you a new skill at the touch of a button, what would you like to learn to do?
Does this have to be a realistic skill? If so I’d like to be fluent in another language, not for any reason really just it’d be cool. If I can pick an unrealistic skill I would like to be able to heal people, for obvious reasons.
8. What’s your favourite season?
Summer, I love this heat.
9. Has having children changed you and, if so, how?
Absolutely. I am a different person and probably a much more difficult one to be with as I’m stressed a lot. I don’t really do many “me” things any more.
10. What gets you through the difficult times?
Wine, and a crazy idea that things might be better tomorrow.
11. What do you like most about yourself?
This is the hardest of the bunch. I’m considerate of others. Or at least I’m pretty sure I am (hate to think someone might be reading this and think “really?”, eek).
Eleven Random facts about me:
1. I once  had green dreadlocks and wasn’t even deterred from them by friends calling me Swamp thing.
2. I am a nerdy swot and despite having a postgrad I am studying for another degree in my non existant spare time, for fun.
3. I’ve done a bit of acting now and again, I have never had a nice costume but I have worn a fat suit, it was hot.
4. I’ve had a go on Rolf Harris’ wobble board!
5. I like to make lists
6. I have hundreds of books and can never get rid of any of them.
7. I get stressed by mess (see number 6)
8. I haven’t eaten meat for nearly 30 years
9. I can sing a lullaby in Jersaise (Jersey patois) , my great grandmother was from Jersey and it’s the only thing that’s stuck.
10. I flew round the world at 15.
11. I hate my slightly wonky teeth.
The bloggers I’d like to nominate (in no particular order) are :
The questions I want to ask them are:
1. What  made you start blogging?
2. What’s the most out of character thing you’ve ever done?
3. If you could be any fictional character who would it be, and why?
4. What scares you the most?
5. What’s your favourite book, film and album?
6. Town or country?
7. What is your favourite childhood memory?
8. If you could give yourself a new first name, what would you choose?
9. Cats are better than dogs, discuss.
10. How would you describe clouds to a person with no sight?
11. What’s the most wonderful thing someone else has ever done for you?

Swimming upstream

Like most parents I think my children are amazing.Not in a “they’re perfect/the next Einstein” kind of way, (they are plainly NOT), it’s small, quiet, awe of their burgeoning personalities and abilities. It might surprise some of you that in general it is Jacob that evokes the biggest feelings of delight in me, after all he stopped meeting conventional milestones in his first year. His milestones are more millimetre-stones, and I have to confess that I have absolutely no idea what an “average” child of his age “should” be doing. I stopped looking at the lists of should-be-able-tos a long long time ago in favour of my own book of his achievements.

Fed up of six-monthly development checks by the paediatrician when he was scored against a chart, I started my own book in which I wrote down all the new things he had done that month and what his favourite activities were. This was my happy book, something that allowed me to celebrate my son in the face of an outside world that was smacking me in the face with all the things he couldn’t do.

Look at all the things he could do!

Look at all the things he could do!

I wrote this book for a long while, eventually abandoning it a year ago when his development was being more comprehensively (and professionally) recorded by his SN nursery. In a way this book was a saviour of my sanity, it showed me that he was making progress, this  made me feel more positive and allowed me to move towards acceptance.

Now we set our own challenges for Jacob, one of which was that I wanted him to be able to start school and have one skill that he would be able to equal his peers in. I decided that this would be swimming. This wasn’t for arbitrary reasons; living near the coast it is an essential life skill, he loves water and I had taken him swimming since he was a baby. His Waterbabies lessons were so inclusive and have left him very confident in water. So, secretly in my head, I decided that by the time he started school I wanted him to be able to swim on his own, with or without armbands.

Making this aim a reality was harder to get going that I imagined. There was no NHS water based therapy available for him despite it being in his physio plan, because he has independent movement. The local leisure centre wouldn’t have him in a group lesson because he needed an instructor in the water with him and so the only option was to pay for him to have 1 to 1 lessons. This is expensive (thank heavens for the DLA money enabling us to give Jacob things that every other child can easily access) and as a result he only goes every other week. Even so, his progress has been amazing. This is despite the fact that the whole sensory experience of the pool is often overwhelming for him, the presence of other children is distracting and exciting and the fact that physical tasks are extremely hard for him. He is almost there:

His swimming instructor loves him and often swims with him for well over the time we’ve paid for

Last week he swam a whole length of a 20m metre pool on his back.

This week he swam 4 lengths of the pool AND his instructor took him down to just 1 ring arm band on each arm.

Jacob the Fish

Jacob the Fish

Our biggest boy is almost swimming without any flotation aids at all and who knows, come September he may not just be equalling his peers he may have passed them by, something I never thought I’d say!

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Light through frosted glass

Eight weeks ago today I received a phone call with news that would devastate most parents, the news that my son has cerebral palsy. But there was a group of people that I told who, like me, did not see this phone call as the worst one I could ever receive. They, like me, saw it as a chink of light shining through a door with frosted glass. A chink of light shining through onto Jacob.

The people (other than members of my family) who shared the moment of diagnosis with me were the parents on the SWANUK (a charity that supports families who have children without a diagnosis) Facebook support group. Over the past year I have relied upon the SWAN mums and dads for support and for advice. I’ve shared my highs and lows with them, they have helped me celebrate the tiny steps forward Jacob has made and they have helped me with understanding and wisdom when things have been tough. They are amazing. If you’re reading this, this means YOU! You are amazing.

It felt weird, to be honest. Very, very strange to suddenly be the one posting that we had received a diagnosis. It’s something many of us both long for and dread at the same time. It meant that my family had our “answer”, although we will never probably know what caused Jacob’s brain damage. The SWAN parents stepped forward with just the right mixture of concern and happiness for us. What struck me though was the fact that so many of them thought that this would immediately mean we got better access to support when I was a bit sceptical that this would be the case. This post, is a tribute to those SWAN parents and the fact that they were right, and that that this means that lacking a diagnosis can negatively impact upon the help you receive.

Of course, it shouldn’t be that they were right and it is truly awful that they were right. Support should be needs led and Jacob’s needs have not changed now that he has a label, BUT what has happened is that his needs and difficulties are easier for others to understand and to explain and therefore what can be done to help seems more apparent. That frosted glass got the tiniest bit less fuzzy looking.

Before his diagnosis, Jacob was on the verge of being discharged by a particular therapy team; now he is a “priority” because his diagnosis means it is known that there can be severe problems. Hey, he had severe problems before but no one wanted to know!

Before his diagnosis, Jacob was being seen infrequently by one therapy team who really had few suggestions of how to best help him. Now, he is a priority as his diagnosis means that he will need a lot of help to overcome his difficulties.

Before his diagnosis our family and Jacob were given very little state support, now he is entitled to a high amount of support because it is easier for someone to categorise his difficulties on a scoring chart.

The chink of light shining on Jacob means they can now see the help he needs, they can see how difficult it is for both him and for our family. Nothing has changed, except he is suddenly more visible. They no longer see him through the frosted glass.

This should NOT be the case, and I have little doubt that any professional involved with caring for children with disabilities would disagree. And yet our experience suggests that it is the case, and parents whose children do not have a diagnosis are dealing with this inequality of access to support every day.

It has only been with the passing of the last eight weeks that I’ve realised how, suddenly, good things are happening to us. Letters arrive with decisions that nearly make me faint because I can’t believe we are suddenly entitled to more help and support. It is great, for us, but I feel a kind of guilt because I know there are loads of other parents and families and children, just as deserving and just as in need of these things, some of whom are marginalised and excluded from them because of a lack of a label.

When I talk to them online, if I share our good news, I feel like I’m inadvertently rubbing it in and making them feel bad. No one has made me feel this way, I’ve just suddenly become concious that things have changed for us because of the diagnosis and this feels wrong. It’s a great shame because the one thing that I haven’t found is better after diagnosis is another support group. I haven’t found another natural place to belong and even though I’ve met some fantastic new people, the SWANUK families are so kind, open and welcoming that they’re going to be hard to top.

And so, for all my lovely friends, sitting behind the frosted glass with their beautiful children, you deserved to be seen by everyone. You might be undiagnosed, but you shouldn’t be invisible or even indistinct.

If this post has touched you in any tiny way, I hope you will please consider voting for SWANUK in finals of the National Lottery Awards. If SWANUK win, it will help them to support more families who may be isolated and struggling,  their needs invisible because their child doesn’t have a label. Voting takes seconds, please click here:

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There to Here

I suppose I should start be explaining how we got for there to here. So early apologies, I promise not all my posts will be as long or as lacking in funny as this one. After all it’s been 4 and half years since our family life began so before you can understand where we are now I guess you might need to know what’s happened already.

Jacob was born 4 and a half years ago in a prolonged and complicated labour that involved syntocinon (induction/augmentation drugs), epidurals and forceps. It was a far cry from the home water birth we’d planned, my waters broke early and a number of issues meant I was in hospital for over 24 hours before they finally decided there was room for me to be induced. Anyway, eventually after around 16 hours Jacob arrived, hoiked out after getting stuck under my right hip (ouchy). He was blueish, noisy and promptly pooed on my tummy but was pronounced fine and dandy by the midwife apart from his slightly wonky toes.

Sent packing the next day from the over busy ward, we were only too glad to be out of there. Over the next few days things became more difficult. Jacob was very sleepy and it was impossible to get him to breastfeed. I called in all possible points of help, only to be reassured that it would take time to get going. But five days roll by and a check is made, “he’s lost too much weight, in you go to hospital”. He remains hard to feed and special SCBU nurses are brought in with more bottle teats than you would imagine existed to try to get him to feed. Eventually after several days, he’s pronounced “fine” and we a re-released to go home, confidence dashed, to try to maintain the 3 hourly alarm clock monitored breastfeed and top up feed regime established in hospital.

Time goes on, things settle down but we still worry. We notice that Jacob has unequal pupils in dim light, one pupil expands more than the other; he is slow to raise his head when placed on his tummy; he is slow to sit unsupported and when he can (9 months) he remains prone to suddenly losing balance and falling backwards like a felled tree; he doesn’t babble but makes plenty of noise; the list goes on and on. We become more and more concerned and yet all our pleas for help fall on deaf ears, we are “overanxious new parents” in the eyes of our health visitor; our early experiences have made me “an overly worried Mum” and I need to “relax and enjoy my baby”, even a GP when asked about my son’s constantly open mouth tells us “he just likes it like that” and “he does look  bit gormless, doesn’t he?”. Even now those last three make me almost say “grrrr” out loud. Finally when Jacob is 11 months old I by-pass our patronising health visitor and on the prompting of a friends Mum (who is also a speech therapist) I take Jacob to a GP and list all the things I’m concerned about. He listens, he too has young children, he sees what I’m saying and agrees to a referral to a community paediatrician.

The next chapter involves being told that our son is “just a late developer, not to worry, we’ll check him again but all will be fine; we’ll refer to speech and language for his feeding problems but basically don’t worry”. But I. Can’t. Stop. Something isn’t right, and I know it, call it mother’s instinct, I just KNOW it. I spend all day, every day doing developmental activities with Jacob, I read books, I pick brains of friends and family, I spend every evening researching things I can do to help him, Googling symptoms and worrying. It is exhausting.

And then, in January 2010 I find I am pregnant again, planned but happened more quickly than we thought it would! Time goes on and at 18 months Jacob is still on the late side of normal development, according to his paediatrician despite not walking. He is referred for a blood test for muscular dystrophy. Thankfully the result is negative.

We wait 15 months for our Speech Therapy feeding referral by which time we have got through the difficult period on our own and although Jacob is still behind in his tolerance of lumpy food, he is now eating and gaining weight well. We are discharged.

In October 2010 Jacob’s little brother Harry is born and the birth experience could not be more different. Harry is born with a kidney abnormality called hydronephrosis, we had learnt that he had this at his 20 week scan. He is checked after birth and it is pronounced not as bad as expected, he starts daily antibiotics. I spend the first few days on an enormous high and then the next week crying and looking for things wrong with him. I don’t find any and he soon shows me that he is developing well. Finally we see Jacob’s paediatrician again and suddenly he has global developmental delay, she agrees to refer him here, there and everywhere. It is too late we are moving. After waiting and waiting we are offered services that we can’t take up. It is massively disappointing and frustrating.

Jacob aged about 2

Jacob aged about 2

We move, not once but twice and in early 2011 and end up in Cornwall. A new start, a new hopeful start and straight away things begin to fall into place. I explain the situation and services appear as if by magic, speech therapists and physios visit us at home; we are referred to portage and meet a new community paediatrician who immediately refers Jacob for further investigations.

Harry not longer after moving to Cornwall

Harry not longer after moving to Cornwall

We move forward have blood tests and chromosome analysis but still no one knows what is causing Jacob’s difficulties. Harry has scans and appointments for his kidney which remains stable but not improved. I have major surgery to remove a benign tumour. Jacob goes to preschool and then to a wonderful Child Development Centre nursery. Life goes on, this is our new ordinary. Jacob is a one off, so far he doesn’t fit into a box but our life as a family goes on as we try to give our boys the best childhood, full of adventure and fun. An ordinary family life, or perhaps just one off ordinary.