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!

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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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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

Brother, I want to Talk to you

Jacob has a “severe expressive language disorder”. Jacob has “good communicative intent”. Jacob “related better to adults than children, with whom he finds it hard to communicate”.

Jacob has always wanted to talk, he had such a wide range of sing-songy sounds when he was a baby I was told several time “he’ll be an early talker”. Sadly that wasn’t to be, and now, at approaching five he has a very limited repertoire of words and only some speech sounds. He relies on signing to communicate and of course this requires the person he’s “talking” too to also know sign language and to know Jacob’s particular way with certain signs. It’s almost impossible for him to communicate with people who don’t know him. Not that it stops him trying, he particularly likes trying to sign “cuddle” to women (flirt). He’s currently being assessed to see if he’s suitable for AAC (Alternative and Augmentative Communication), I’m not sure if the possibility of this thrills me or frightens me.

I’ve noticed that parents with a child with speech problems seem to adopt a strangely similar way of speaking and gradually I’ve noticed that Harry has started to speak to his big brother in the same way. He very cutely affirms Jacob’s every attempt to make words with a “Yes, it’s a ‘blah blah blah’ Jacob”,  and this mirrors what I do to positively respond to both boys attempts to say words, whether it’s Harry grappling with “indecisive” or Jacob trying to say “ball”. It’s so funnily perceptive that Harry is now carrying out speech therapy techniques on his big brother. It also makes me feel a tiny bit sad.

Harry is a great talker, and yes I do mean this two ways. He never shuts up AND he is scarily mature in his speech and his understanding. This is probably as a result of all the speech therapy he’s had forced upon him, being dragged along to his first SALT appointment at barely a month old. His growing awareness of the world has meant that he’s just started to become aware that Jacob is different and he is obviously concerned and confused by it at times. He’s still so little that I struggle with knowing the best way to explain things to him.

One morning, we were in Jacob’s bedroom playing about and getting dressed when Harry said to me “It’s alright Mummy. He’s OK. Jakey’s OK, he can talk now” and this was the first time I realised that Harry knew that Jacob’s lack of speech was something that worried me, something that set Jacob apart from other boys  his age and from other big brothers. I was in awe of his powers of perception, sad that he obviously desperately wants his brother to be able to speak and so touched that he was trying to reassure me. It moved me to, very hastily disguised, tears.

When Jacob went to hospital for his MRI Harry was ecstatic and excited when we returned, but it soon became clear that this was because he thought the doctors were going to have made Jacob better and that he’d now be able to talk to him. He said to me “Jacob’s better now, the doctor made him better and now he can talk”. I gently tried to explain that this hadn’t happened. He was visibly deflated when he realised nothing had changed. He’s desperate to talk to his brother, to play imaginative games and to talk together about what’s happening. I wonder whether to try to explain that this moment might never come, will my saying out loud to Harry mean I’m accepting the possibility my eldest son might never have a conversation, might never say Mummy? What if I try to explain all this to Harry and Jacob proves me wrong (oh God, how I hope that he does)? How can I explain these things that both upset and perplex me to a two year old?

Harry tells everyone “Jakey is a great brother” before hugging him and shortly afterwards bashing him over the head with a car he doesn’t want to share; so far, so two-year-old-normal. But what of Jacob, what does he think? I imagine he’s frustrated by the fact that his understanding is so far ahead of his ability to communicate. In my head I just hear this:

Talk by Coldplay

Oh brother I can’t, I can’t get through
I’ve been trying hard to reach you, cause I don’t know what to do
Oh brother I can’t believe it’s true
I’m so scared about the future and I wanna talk to you

D-Day – on getting a diagnosis

Firstly, it’s only fair that I tell you that this is old news. Old news to me at least. Not massively old, say a few weeks at most but not something I learnt about today or yesterday. There is a reason for this delay which will become very obvious as this post goes on.

Our very own D Day arrived on a sunny Friday afternoon, at around 3pm, just as I was doing some final cleaning before my in-laws arrived for a long weekend. The phone rang and I was annoyed as I had to stop what I was doing when I didn’t have enough time as it was. However, insignificant worries such as whether the place would be clean enough for my Mother-in-law (who is lovely just much MUCH better at keeping house than I will ever be) soon went out the window. It was a call from Jacob’s paediatrician. Some 5 weeks previously Jacob had extensive tests done under a general anaesthetic; an MRI brain scan, lumbar puncture (needle into spinal canal to remove spinal fluid), blood and urine taken for testing; all done at the request of his neurologist in an attempt to find a diagnosis. This call was the one we’d been waiting for,  it was the results.

I have to admit Jacob’s paediatrician was very skilled at this point, she told me so quickly what they had found that I didn’t have time to worry or panic about what she was telling me. His brain scan had shown a a definite diagnosis, a conclusive reason for his problems. Jacob had brain damage, in particular he had periventricular leukomalacia (PVL) – damage to the white matter around the ventricles in his brain. If you’re interested you can read more about it on the Scope website here.

She quickly told me that nothing we had done had caused this damage, that it had most likely happened between 20 weeks of pregnancy and when he was born. As a result of this finding, she said, they would now be giving Jacob a diagnosis of cerebral palsy. She explained that this finding was not what they expected as in many ways Jacob didn’t immediately stand out as a child who has cerebral palsy and he didn’t have many of the typical history of a child with PVL either not being low birth weight or premature. She pointed me in the direction of where to find detailed and reliable information on the internet (knows me too well!) and said we’d discuss it further at his next appointment.

It was after this phone call that my in-laws arrived, which was probably a good thing as it stopped me going into immediate negative thought free fall and largely because I didn’t have this alone, panic time I think I have dealt with the diagnosis better than I might otherwise have done. Serendipity if you like.

Over the next couple of weeks what I wasn’t expecting was for old upsetting thoughts and feelings to come rushing back. Thoughts and feelings that I thought I had dealt with and moved on from. The feelings of grief for the child and family life we might have had, thoughts of why me/us/Jacob. Negative, pointless and angry thoughts that I hadn’t had in several years. Whilst my husband, very sensibly, felt that this didn’t change anything and we should be grateful that at least it wasn’t a degenerative condition or one that Harry would need to worry about should he want children in his future; my head agreed with all these points but I had felt a cloud had come back over me and I couldn’t yet see through it. I had always had concerns about Jacob’s birth which was long (not unusual), where my waters had broken more than 24 hours before I was finally induced, where Jacob’s head was not engaged until later in labour (q unusual in a first pregnancy), where I had a 10 minute contraction at one point and had to have the syntocinon drug flushed out with saline, when Jacob was born with forceps with the cord around his neck. Very early on when Jacob was a newborn, I was worried that because he has unequal pupils it meant that something had happened to him. The diagnosis almost felt like a justification of my early worries, that I had been right all along in thinking my darkest thoughts about his birth.

It’s for these reasons, that I haven’t written this post until now. I needed head space to think through what I felt, to explain it all and frame what getting a diagnosis for Jacob felt like. Also, to move away from feeling upset and angry towards a more positive attitude that focusses upon dealing with the hand I’ve been played. I still have questions, and I feel we’re now at the beginning of a new journey of finding out and learning. I haven’t entirely reconciled myself to his traumatic birth and the part it might have played in all this, but as yet I’m also unsure if I want to go down the path of opening that particularly tricky can of worms.

Hopefully a diagnosis will be a way of helping Jacob to get more targeted support, may be it will make it easier to define his needs or for others to understand his difficulties. It’s too early to say.

We always wanted a diagnosis for Jacob; tiny bits of us didn’t in case we found out something really devastating, but mostly we wanted to know. Forewarned is forearmed and all of that. We’ve now had our D-day, and do you know what? It is just IS. That’s just Jacob, that’s how he is. I don’t even feel that he should or might have been different, even though maybe somewhere in a parallel universe, shitty horrible luck didn’t happen and his brain didn’t get damaged. Of course, I wonder what our life would be like in his parallel world, what MY life would be like, but who knows? It might have been worse. He is, after all, a gorgeous, beautiful, cuddly, affectionate boy and I am grateful for him every day.

A beautiful boy