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?

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.

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.

These stretchy strings are very funny

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.

The One where Camp Amazing turns out to be… amazing

As a first holiday as a family of four it might have been a foolish move but way back in the cold, dark winter going camping with the boys sounded a fantastic idea. In my mind’s eye I appeared vision of he long hot days summer days of my childhood spent travelling round France and Spain with my parents and our old canvas tent. It was so hot that the cassette cases on the parcel shelf of the car melted. Ahh, great days. So I didn’t think twice when I booked up our weekend break, despite the fact that we didn’t own a tent, sleeping bags and I had a husband who hated camping.

As the holiday drew slowly nearer, I slowly began to panic slightly. What was I thinking?! We had to much stuff to buy or borrow, how was my husband (who has part of his spine fused together) going to get any sleep, would my chronically bad sleeping children sleep AT ALL!  To stave off the anxiety I began over-planning, days of research were undertaken to choose the best sleeping bag for the boys, several camping shops had to visited to see the possible objects before the best price could be found, lists needed to be made (if in doubt, write a list: feels like doing something but avoids actually doing anything!); but as the summer holidays approached a pile of camping “stuff” started to gather behind the dining table and I slowly stopped panicking and started to get excited.

As it turned out the only things I really needed to worry about were:

Would we be able to fit everything in our car and roof box? Seriously, this is half of our stuff:

Half of the stuff to fit in the car *@&!

I was excited but filled with trepidation, needlessly as it turned out. We could not have picked a better place to start camping as a family, Camp Amazing. Camp Amazing is a weekend camp for families who have a child with complex needs. I always thought that this was a fab idea, but now? Well, now I think it’s a effin fantastic idea! And this is why:

• It’s somewhere where everyone GETS it.
• It’s somewhere where your family is normal and no one stares or thinks what you do or say is odd.
• It’s somewhere where siblings can find friends who walk in similar shoes.
• It’s somewhere where you don’t feel the need to explain your child in any way.
• It’s somewhere where there was something to do for everyone, no matter what.

And after that I should really big up the sibs. Harry is only little so I’m just at the beginning of learning about what it will mean for him to grow up as the only sibling of a brother with a disability but I can say that if he grows up half as kind, generous, tolerant and considerate as the siblings I met at Camp Amazing, I will be so pleased (and, of course, massively patting myself on the back!). I’ve never met a group of kids who can play together all weekend and yet I didn’t see one argument, who can work tirelessly helping out and keeping other children safe and happy. They really were amazing.

So, if you didn’t make it this year, go on, be brave, think about booking for 2014,. I promise you, you’ll make amazing memories and most likely make some new friends, plus you’ll be in at the early years of something really special. Claire, I don’t know if you’ve realised yet but I’ve got a feeling that you’ve started something that is probably going to get a teensy bit massive!

Oh, and if you’re now seriously considering it, here’s a few things I learnt that might be useful:

You can never have enough bibs or clothes, washing them in washing up liquid really doesn’t work out that well!

Bring two pairs of flip flops in case yours break on the first day.

Late nights, discos and sensory processing disorder can be an interesting combination – next time I need to plan in more sensory diet time for calm down periods.

Someone needs to invent an extend-able dog lead type device for two years olds who are always running off, as it’s amazing how quickly they move and how easy it is to disappear in a marquee.

If you have a potty training or just trained child get the potty out when you’re beginning to set up  otherwise they will poo on the pitch.

If you can avoid these and our other major pitfall of ripping the tent on it’s first outing, well you’ll be for the best holiday ever!

The boys enjoying Camp Amazing

 

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

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

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….

 

Playing Catch Up

This week I heard words that, to be honest, I’d given up on waiting to hear long ago. Three little words that astounded me.

“Might catch up”

When Jacob stopped receiving play development therapy from portage we were referred to a local outreach service run by a charity called BIBIC, a charity that helps children with brain related conditions. We’ve just had our second visit from our lovely therapist, the previous one being around 6 months ago; session 1 involved lots of questions for me and a number of play based assessment activities for Jacob, in session 2 the therapist ran through her observations and findings and suggested a number of activities we can do daily with Jacob to help his sensory processing problems and move his development forward.

During the feedback the therapist showed me a list of all the things Jacob couldn’t do at the last visit that he could do now and showed me that Jacob had moved forward almost 4 months of development in the last 6 months! His fine and gross motor skills previously measured at around 15 months are now at 18/19 months level. Much as I know that he is progressing, I found proof of this large leap forward  incredible. It was then that the therapist said the astounding words: “if he carries on like this, as the developmental milestones become smaller, he will gradually catch up”. I said “Do What? Sorry? He might catch up?” She smiled, nodded and stressed “He may do”. I know it’s a big might, and I am mostly reconciled to that that he is unlikely to ever really talk , but the fact that he is showing such progress in his motor skills is just so exciting regardless of whether this level of  progress will continue or not.

This news has really motivated me to continue with the hard work. For the first two years of Jacob’s life I felt like I was knocking on a door only to see it open a tiny bit and then slam back in my face. It was relentlessly disheartening and so many times I felt like giving up. I felt as if all the work we put in was achieving nothing. It’s amazing to watch children without disabilities just do stuff, they just pick it up and off they go. Everything with Jacob has to be taught, over-learnt and taught again, hand over hand. It is unrelenting repetition and sometimes it feels if you are no further forward after months of work. Even with proof of fantastic progress, I would be lying if  said I didn’t often feel resentful of the fact that so much of our life is dominated by carrying out Jacob’s therapy; but with news like this? Well, I just need a nightly big glug of wine and a vow to try again tomorrow. He’s trying so hard, so I can’t give up

I am so grateful that we’ve had this chance to work with a a charity that has let us see Jacob is moving forwards and that he is doing well in his own way. So it saddened me greatly to receive news that the BIBIC outreach programme is finishing due to lack of funding. This will be Jacob’s second and last visit and programme. We’re not giving up though, we’re off to find a new and exciting way to maximise his progress as he seems to be on a roll at the moment. More news of that anon……!

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.

 

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 :

1. Complicated Gorgeousness

2. It’s a Small World

3.Little Mama Said

4. Are You Kiddingney?

5. Thea and Nates Mam

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?

School gate tears

Yesterday was a difficult day, I felt really, really sad and a bit angry; but, oddly, today I don’t at all. Today I feel tired and drained, it has been a roller-coaster two days. Two transition to school days.

Jacob is my first child and so this is my first  ‘starting school’ experience as a parent. Others tell me it is always hard, and many tell me that they blubbed like a baby whilst their child skipped off happily at the school gate. But at least they were there, at the school gate. I won’t be and it is breaking my heart.

When Jacob leaves for school in September I will say goodbye to him at the kitchen door. An escort will collect him and take him to school in a taxi. These people that I don’t yet know will collect him at around 8am and return him at 4pm. I won’t see his teachers or teaching assistants, they and his school environment won’t become familiar to me. That knowledge and experience that leads to trust and certainty won’t happen. This is because the nearest suitable school that can cater for Jacob’s needs is a 40 minute drive from our home. Whilst I’d love to take him myself, the situation is that even if the 160 minutes of driving along country roads didn’t do me in, it would definitely be too much for Jacob’s younger brother who’d be dragged along for the ride. Not only would he have all that time sat in the car but it would mean that he would have a very disrupted experience of going to playgroup and when he starts school it just wouldn’t work at all.

And if the idea of sending him off with complete strangers to spend the day with complete strangers isn’t enough, we need to add into that mix a child with complex needs, who is age 2 developmentally, and who has no speech. Put these together and you have a situation in which we will be very disconnected from his school experience. We will be completely reliant on his home/school book to know what he’s been doing each day and will just have to judge by his behaviour how happy and settled he is.

Yesterday I felt really upset. All of these things felt so wrong and I wondered if we were making a HUGE mistake, it was wrong for us to send him so far away to school and he would suffer because of it, we wouldn’t be involved and so we couldn’t protect him. I felt really, really worried that I no longer wanted to send him to that school even though there is no viable alternative. All of these worries made me feel really angry. I felt that I wouldn’t have this huge amount of worry and separation if it wasn’t for Jacob’s disability. I felt really angry that this was yet another thing that hammered it home, that we were different and that our parenting experience had to be more difficult and less enjoyable than it is for most people. Hell, it was even depriving us of the school gate experience.

A days reflection gave me time to really think about why I felt that way. I realised that my upset was nothing to do with Jacob, it wasn’t really to do with concerns for his well being; it was to do with me. All my upset was really because I will have to take a massive step back. Not only will he be off at school all day but I really won’t be very involved in his school life. For his whole life, his almost five years, I have been there for everything; involved in everything and the world expert on all things Jacob. His move to school is a massive step away from me, an even bigger step away from me than it would’ve been if he went to the school in our village. I needed to recognise that it was this separation upsetting me and not the school.

Once I had realised that these were my own feelings causing this level of worry and not something desperately horrible was going to happen to Jacob because.of the school choice we had made, today was easier, Jacob spent the morning at school and was fine, tired but happy. It reassured me. I know that it’s the right place for him and I have to force myself to keep remembering that. I wish I could move the school closer to us, it’s a shame it’s so far away from home but there y’go, can’t have everything and really it is most important that he gets the best start.  I’m just going to have to find a way to be as involved as I can be, I’ll probably the parent they all groan about –  after all you can’t stop a control freak mother.

If you have a similar schooling arrangement I’d really love to hear from you; especially what worked, what doesn’t and how you’ve managed to keep involved in your child’s learning. I’d especially like to hear reassurances that it’ll all be fine, I really really need those!

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!

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

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!

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:

Reflections of the truth

I follow a great blog called Premmeditations whose author recently wrote a letter to herself, you can read it here. She found that writing a letter to herself helped her work towards giving up guilt. I’ve written before about my guilt that I don’t do enough therapy with Jacob (you can read about it here) and I’ve probably skirted over the large amount of times I have felt responsible for Jacob’s disability (here) but many of the things I feel guilty about are nothing to do with Jacob and his disability. In fact in thinking about writing this I realised what I normally feel guilty about is something else entirely:

Dear Me,

I once heard someone say “we use other people as a mirror”, that what we believe (or imagine) they think of us is actually what we think of ourselves. This came as a revelation to me. I have always worried far too much about what others think of me and felt that much of what they thought of me was negative. I reckon this will come as a huge surprise to people who may have known me for a long, long time. This is because I am fairly good at putting on a show, an act; a confidence act. I know that self doubt will get me nowhere, so I squash down those negative thoughts and just, well, bloody well get on with it. Feel the fear and do it anyway.

Many (many, many) moons ago at school we played a game when we all wrote down one thing about each member of our circle of friends in secret and then each read our own. There was no nasty-ness (girls school but we were proper friends, right?!) but I couldn’t believe it when many of mine said “confident”, “very very confident” and the like. I can remember thinking “I’ve spent almost every day with these people for 4 years and they don’t know me at all!”. They don’t know that inside of me is an ugly, twisted little creature who constantly shouts  “You’re not good enough,  no one really likes you, you’ve made an idiot of yourself”. This creature shouted loudly and often when I was younger, now less so, but still daily.

Anyway, rambling on, so back to the idea of other people as your mirror. I’ve always thought that others think badly of me, that I’m not doing things right, that I’m not doing well enough, that I should be exceeding expectations not just meeting them. When it comes down to it, I feel that other people expect me to be perfect. Always full of energy, always running around getting things done, doing them brilliantly; but the moment I heard this phrase I realised that it is me that expects all these things of myself. It is me that reads nuances and subtext into things that are said to me, looking for the bits that imply I’m not good enough.

So, my friend, you need to cut yourself a break. You need to treat yourself gently, kindly and recognise all that you do achieve. You need to take a bloody great chill pill and stop expecting to be bloody perfect, OK?! You will burn out, you are probably close to doing so, so you need to listen.

You try your best. Yes of course there are times when things get too much and you possibly don’t deal with things in the best way possible but, you know what you’re human and although you might be full of faults, so, my dear, is everyone else and so you really mustn’t constantly beat yourself up for not being perfect.

When you get fed up with dealing with the umpteenth tantrum of the day and get a bit shouty and cross this is because you are human. Loads of people find two year olds a strain to deal with and they possibly don’t have a child with sensory processing disorder pulling their hair out every time their sibling has a tantrum. Most people would find this stressful to deal with. Finding it stressful does not mean you are a failure and when others try to insinuate that you should not be stressed, just ignore it, they just haven’t walked a day in your shoes.  I repeat, feeling stressed does not make you a failure.

Lots of people find parenting hard and tiring without a child who gets out of bed multiple times throughout the night and repeatedly head-buts his own bedroom door. So give yourself a break, it is difficult to retain a sense of perspective when you’ve not had an unbroken night of sleep in approaching three years. Tiredness makes everyone ratty. You’re not, in some way, worse than others because you sometimes feel like you can’t cope.

Forgive yourself for not being perfect and not always dealing with the challenges life throws at you in the perfect way, at the first opportunity. You don’t have to be perfect, in fact, expecting yourself to be perfect is probably a bad example to set your children. No, NO, stop it, SEE your criticising yourself again! Move on from that thought please, nothing to see here…

Look at how far you’ve come. Think back to the days when you endlessly lay awake at night worrying about Jacob and what could be wrong. The crying phone calls with your Mum when you went over and over the same anxieties. The fraught conversations with your husband about your concerns when he wanted to believe that all was still well. You have moved on, you have made progress and that’s something commendable, feel proud. You’ve moved forward with the life you’ve got. You’ve overcome a serious illness and the fear that you might not be here to see your children grow up, you recovered, and although your body will never be as strong as it was, you’re still here and not only that you’re doing the best you can in often difficult circumstances. It is OK that you are sometimes tired or in pain and occasionally need a day when CBeebies does the majority of the parenting.

Instead of thinking about all you could have dealt with better, of all the things you should have done but didn’t, think about what you have accomplished that day, think of the things you dealt with well, of the fun times you’ve given your children, of the things you have done for other people. Don’t just constantly berate and punish yourself for not being perfect. You don’t have to be.

Love me x