The daunting journey ahead that is rehab

So here’s the thing

I like results quickly. In everything. I like baking, but not bread really because you have to wait. I like hobbies; jewellery making, scrapbooking, things where you see the results straight away. I have friends that do quilting, knitting, learn an instrument etc but it takes such a long time to see results. I’m not a good finisher. I get bored easily and I know I’m impatient.

So here I am at the biggest challenge of my life. We’re not even talking a quilt or a tapestry here. I’m meaning walking and talking. We’re at the starting line of the biggest mountain we’ve ever climbed. And I have to admit I’m scared. Scared on the one hand about whether she will regain her speech and her mobility, concerned on the other hand that I won’t make the cut.  This time, I can’t afford this time to stop the music practice. This one can’t stop, literally, her life depends on it. What if I don’t make the grade? In those moments as a mum that you pray for patience, this DEFINITELY WAS NOT what I had in mind! Immi is going to need patience, care, motivation and I’ve got to provide it. I’m really not sure I have it in me. There’s a nervousness in my gut. An Olympic athlete trains and wants to win that gold, but if they don’t win, what actually happens? What’s the worst that would occur? They wouldn’t take that medal home, they would miss out on some sponsorship and they may owe some money, but if we don’t win at this challenge my daughter is not going to walk or talk again.

I’m human, I’m not perfect. In the cold hard light of day I see my failures and weaknesses. I know my character flaws and maybe that’s why this next journey feels like Everest. I haven’t even run a 5K and I feel like I’m being asked to run an iron man. But this is where I cling hold of a higher power. There are three verses from the Bible which come to my mind.  The first is this:

This verse was written by a guy who had been through a whole lot of life and at the time was writing from a prison in Rome. He’d been shipwrecked, gone hungry, flogged, but he said that he could manage in all circumstances and even find joy in them. I like how this image highlights the word ALL. Ours are unusual circumstances, but we can gain the strength to go through this, however long it takes. We can keep going, through the strength God give us. It's also personal, he strengthens ME, not the chap down the hall, not the person at the end of the phone, not the physio giving instruction, but the ones at the rockface, the ones going through it. You know those people who stand and give out drinks during a marathon, a bit like that, but I reckon, more like someone who runs alongside you and gives you a drink whenever you need it.  Does He give a piggyback? No, we have to do the work but He is there to strengthen at every moment we need it. 

The next verse was written by the same chap. He had a problem, we don’t know what, he called it a 'thorn in his side', but it wasn’t going away and he felt like giving up.  But then he felt that God spoke to him these words:

I’m holding onto this, because it’s when I’m at the end of myself that I’m given some extra resources from somewhere unexplainable.  I feel pretty daunted by this huge rehab mountain ahead, but as I work out of my weakness and lack of knowledge, we will see change. 

And the third verse is this:

(no, that's not me!! 😄)

This verse has become more and more important to me over the years.  It's a truth that has been around for centuries and science is finally catching up!  This verse was written thousands of years ago and is found in a book called Nehemiah in the Old Testament. The Israelites were heading home and had just been reminded of the law they needed to hold to. It seemed huge, impossible to hold to, but they were told ‘Do not grieve, for the joy of the Lord is your strength.’ 

In recent years, scientists have realised that joy, and laughter cause us to release the hormone Dopamine (plus others) in our bodies that these hormones ready us.  They ready us for work, for concentration, for challenge. Educators realise now that pupils learn best when they are happy, relaxed and connected relationally to their teacher. God knew this waaaaay before. So when we sing and worship it does something in us, releases Dopamine (through joy) and Oxytocin (through connection) and makes us ready for the challenge ahead. Having joy really does bring strength to succeed, it’s not just a quaint phrase. I’m holding onto that! It maybe the only thing that will get me through this!

So am I concerned about the formidable mountain that lies ahead? YES.

Am I concerned that I'm not everything and  I don't have everything my daughter needs? YES.

But do I have resources to draw on? YES. The physios, OTs, SALTs will provide the plan and some of the physical help, but spiritually and emotionally those resources will come from beyond me.  I don't dig deep within me, truly, there's not much there.  If I want infinite resources, I need to dig elsewhere, outside humanity.  I'll dig deep in God. 

Results Day

I knew this day would come. The day the rest of her cohort pick up GCSE results but we get nothing. It stings and I need to grieve a while today.

I knew a few years ago that she wouldn’t manage GCSEs and I knew last year for sure that she wouldn’t be doing any, but today still smarts a little. There will be no celebration, no excitement about the next step. No sense of achievement in this way. I need to allow these emotions of sadness and grief to surface, just for a while, to acknowledge them, to reach a place of acceptance (yet) again. This is not the life I would have chosen for her. No one wants to have a child with special needs. Yes, we make the best of it, we put a positive face on, we choose to pull out the positives, see the aspects of life she is making progress in and acknowledge those. But truthfully, deep down, I would give anything for her to be able to grapple with Maths problems and write an essay, to feel a sense of grappling with learning and the sense of achievement exam results bring. Today highlights once again, the differences, the losses, the gap between Immi and her peers. It’s a day that points at what she cannot do, like a bit neon highlighter marking her life. A day that I fight off a sense of failure. I know it is not my fault or anyone’s fault, it is just how life works - life is unfair- but it sucks. Every parent wants the best for their child, wants them to have all the opportunities in the world and today highlights doors that are closed. Thankfully, I think she is blissfully unaware, she moved from Mainstream to specialist provision three years ago and today I am so thankful for that. She is not compared today against a cohort of academic achievers, she feels she has found her tribe. A wonderful bunch of pupils who find joy in many things. But I feel for those that are. That have tried within this strange year, but despite their best efforts results day will deliver little to celebrate.

So today, for a moment I allow myself to grief. To be saddened by the ‘what could have beens’ and to acknowledge the differences. I dig deep to congratulate the ones who have achieved, knowing that for Immi these same accolades won’t ever come.

And then, I will dry my eyes, straighten my crown and go and make breakfast!

Charity choices.

I met some lovely people this evening.  We walked into the room, knowing hardly anyone (actually there was one other couple we knew) and walked out having connected, chatted and made friends easily with a number of people.  What made it so easy?  We all had something in common.  We all had a child with Autism.  

We have not had very much to do with the charities surrounding Imogen's labels.  Not for any prideful, 'we don't need it', issues (its quite clear we do!) But simply because we haven't had the capacity.  If Imogen only had one diagnosis it might have been easier - you would know who to give your allegiance to!  But it is more like playing cards, 'pick one, look at it, put it back in the pack!'  

We have 'dabbled' in charities.  Hemihelp (for children with hemiplegia) gave us some great advice and have a really useful parents forum on their website. So when Imogen was first diagnosed I spent a good six months writing to people on the forum and my Dad also ran a half marathon raising money for them.  

I also spent a bit of time on the Dystonia Society website when she was diagnosed with this strange and unpredictable disease. The actor who played 'Charlie Fairhead' in Casualty was their patron, being a sufferer himself, and we continue to dip into both of these great charity websites. But then the epilepsy rose its head - I knew nothing about epilepsy, but I knew there was an Epilepsy Society as we lived in the village where their headquarters is based. 

So again I read up on their website, but then the wave of the next two diagnoses - ADHD and ASD (don't even start me on dyslexia!) and with them a whole lot more charities.  I found it all, the number of labels, diagnoses, charities and websites, quite overwhelming and backed off from most.  Not because they weren't friendly or helpful, but there was just too much information, I felt like I was constantly playing that game at the fair when you hit the gopher on the head and another pops up.  Just to keep on top of all the medical appointments was a feat, let alone try to make contact with charities, and which would I pick anyway?!

When we moved up to Derby I was put in touch with 'Umbrella' which is a charity in Derby for families with Special Needs children of varying diagnoses. That was helpful and we became members. The group met once a month (and still do on the first Wed morning each month) at our church, but I still kept my distance.  I didn't intend to keep my distance and I wasn't sure why I was.  I only recently realised its because  I just don't have the capacity.  Now that sounds a bit crazy when it is a charity that in its nature is supportive and caring (as most are), but actually to be involved in any charity takes time. Time to fund raise, to listen to other parents, to go to meetings.  And I just didn't have any margins to do that, I guess fear of being sucked into something that I couldn't cope with kept me away.

This evening I think may have been a turning point.  We went to a meal.  It was a meeting of the NAS (National Autistic Society) Derby Branch.  It was great, there was a natural connection.  People who understood.  People who had been through similar experiences and had either walked a similar path or were walking it now.  I met some people who I have a feeling are going to become good friends.  And I realised that for the first time in years, I must have found some capacity!

(I do want to say at the end of this blog that ALL the charities that I have had any dealings with have been supportive, helpful, friendly and ready to help.  It is simply our journey that has stopped us getting more involved in any one charity.   If you or someone you support is struggling and needs support in a certain area - please do contact the relevant charity.)

A Good Day? - Pyjama Day!

So that was Good Friday.  Was it good?  It was for Imogen!
So what constitutes a good day for her?  Well, it is very simple - it's a pyjama day!

'That's it?' I hear you cry!  'That's all she wants to ensure it is a good day?'
'Yep!'
Now this is where I get to gloat a little!  While other parents of nine year old children can never do enough, can never take them anywhere exciting enough, can never buy them the next 'in' toy or gadget quick enough to please them, we never have that problem. Imogen is content.
When we go somewhere, ie the zoo, and we offer both kids a couple of pounds in the shop to buy a souvenir, she never spends hers. When we do venture into the shopping centre (which I must admit is a rare occasion) she never wants anything.  She is easy to please.  Christmas is tricky, last year I asked her what she would like, she said 'some paper to draw!' Is that it I asked, 'yes.....oh maybe some pens!' It makes it hard to advise extended family who want to buy a gift.   And when she does receive an unexpected gift she is so grateful, she will keep thanking people years after for something they gave her (even stuff they were getting rid of!)  She struggles to retain names, so I think it may have something to do with her linking the gift to the person in her brain to help remember the name. Anyway....

She came into my bedroom yesterday morning in her bunny onesie, declaring 'I'm the Easter bunny!', asked if she could snuggle and watch a DVD with me and settled down.  Normally we do church on Good Friday but due to her brother having a stomach bug  only my husband went. He has to, he's the Pastor!!
So we spent the day ensconced, moving from one sofa to another, watching DVDs, (the kids chose 'The Lion, the Witch and the Wardrobe - a good choice for Easter I thought!)  Me?  I, as most Mums I image, struggled to do the same, I watched half a film, messaged with a friend, had a shower, got the kids food and drink, prepared for Sunday (I am running the service), made a cake, tidied up my bedroom (which was nearly equaling Imogen's for tidyness!) and caught the tail end of a different film - and that was a relaxed day!  But Immi?

My Easter Bunny!

She was content, 

she was relaxed, 

she knew she was loved, 

she wasn't being bombarded with people, 

overwhelmed with heightened senses and 

pressed to challenge herself academically. 

She was happy....
and once again, I learn.

Will the real Imogen please stand up!

There are two different types of Imogen - and they are like chalk and cheese!

I found myself a few minutes ago chatting to a Mum online who was considering using drugs for her son's ADHD.  We have been through this dilemma, a journey that lasted over a year.  The medics were all 'strongly suggesting' that we try her on a drug.  The school were keen for her to manage without, and after doing some research, I was keen to avoid it too.  However after a year and a half of no academic movement, total refusal to try to read, virtually no concentration, no ability to act with any kind of thought to consequence and CONSTANT requests for hugs (no joke, she just couldn't get enough).  We finally came to the conclusion that maybe we should give it a try - just a try mind!

I took home the prescription, and we ummed and ahhed again for so long that I had to go and get another!  
Finally we decided to go for it and what occurred I can only describe as little short of a miracle.  The change was astounding. Over night she no longer needed the weighted blanket, no longer asked for hugs all the time, almost overnight her reading age shot up, due to actually being able to look at a page without the picture, colours, words, noise, traffic outside, hum of a light switch, wind, rain, sun - everything and anything, being a distraction.(Yes she still struggles to read now, but at least is trying and every now and then I catch her trying to read a book or a sign alone - yaaay!) She could finally sit in a group and answer questions without constant movement and shouting out.  I cannot explain the change fully enough.  And these have continued...
However, there have also been downsides - Immi is still Immi while on the drugs, but she is sensible Immi  - for those of you as old as me, it is almost Worzel Gummage like; she has changed her head over.  Sensible Immi is good, but not as fun and not as happy.  Sensible Immi doesn't like eating and sensible Immi has a bit of a grump on after school (as the drugs wear off I guess). And sensible Immi still has Autism and so doesn't really relate to others on the playground well.  Sensible Immi seems to be getting more tired too - is that the drugs or just that we are at the end of term?

Either way, I am looking forward to having fun loving Immi back for a while (during the holidays). Yes, the house will likely be a mess, yes she will break things, she will drive us all mad (especially her brother!)  She will want the same Paolo Nutini song on over and over and over again - (the Quacky song - sorry Paolo, I don't know its real name!) But she will make us laugh, she will live up to her middle name of Joy.  
I asked Immi a few weeks ago whether she liked taking her 'sensible tablet' as we call it, I don't want her to take it if it is making her unhappy and we constantly monitor whether it is still right for her, trialling a few days without it at school every now and then.  Her answer surprised me; she said it was like someone pulled a curtain back so she could see, and she also said that she thought that she was more the real Immi with the tablet.   Which one is the real Immi?  They are both her. Does she prefer sensible Immi just because she fits in the system better and so gets better feedback from others around her - I don't know.  She appears calmer, more in control on the days with the drug, but she certainly seems more joyful (yes, verging on out of control sometimes) on the drug free days.  I do know that although I love her coping better at school and actually making some progress, I miss her smile on the 'sensible' days, and I love the joy, the freedom, the giggles, the carefreeness of the drug-less days.

 

Don't squash the passion...

So I have just returned form Imogen's class assembly. 

Meet RO the robot and BOT the dog...

It was pretty run of the mill.  Kids standing up and speaking, a few musical interludes, photos on the screen of the residential trip, that kind of thing.  Imogen did well.  She had a couple of sentences to read about her robot and robot dog that were made from cereal packets and ice cream tubs (amongst an assortment of other recycled rubbish!)  I was proud of her, she stood up and said her words clearly, albeit much much slower than her counterparts, concentrating on the words that she had to get out, right arm jerking and flailing uncontrollably.  Everyone clapped her at the end, but I came away sad.

Why was I sad? I was sad because they had finally done it;  they had achieved her doing it all in their way.  She had been squashed, a square peg forcibly shoved into a round hole.
 Had they told her she was going to talk about her robot, and then stood her up, given her her robot (and robot dog!) and asked her to tell everyone about it, she would have stood there with pride, face beaming, completely unaware of all the parents and that she 'should' be embarrassed.  Her chin would have been lifted and she would have spoken (probably at length) about the virtues of her wonderful creations! I know she would have done this because she does it all the time, in many situations, anywhere, anytime.  Like the complete rendition of 'I wanna be like you' to King Louis at Disney World and the conversations with the Zoo Keepers at the local Zoo. At church she is all too willing to go out the front to answer questions or join in a song or dance! 
But they didn't want this.  Instead she had to read - that most hated of all activities, the thing she puts off daily, the thing she struggles with.  Her creativity, her joy, her passion and zest for the activity (which she definitely had; she told us many times of the activity and actually made the dog almost single handedly -literally!- at home) were all lost to a monotonous wall of words, not even a straight clean wall, but a crumbling wall, struggling to hold together.
I ask myself, who has the problem here? Is it Immi who actually has the passion about the activity, but it was lost in what she was asked to do?  Or is it the school who can't cope with the uncertainty of what she might come out with, who can't deal with a bit of spontaneity?  
I taught in this very school last year, so I know where the fear comes from; what if she says the wrong thing, what if she has a melt down, we don't want her to make a scene, we don't want her to be different.  BUT SHE IS DIFFERENT!  And we, as a family, have learned, and are learning to embrace her difference.  
So this evening I am getting her to do her talk again for us and we will cheer an clap and tell her how amazing she is that she can create and find joy in her creation...

A bit of the journey to bring you up to date....

As a family we spent a number of years in Central Asia and then ended up in the UK.  I thought it might be useful to share a little of that story to bring you up to date....

We were living in the capital city of Kstan and were leading a drug and alcohol rehab centre.  Every thing was going well, we had friends, we had a good ministry, the family were settled, we were involved in the local expat school and everything was looking good.  I remember walking one day from our house to the local bazaar in the sunshine and although I was was stepping over the odd open drain I remember thanking God for bringing me to that place and for being happy.  Now, if you are a happy go lucky kind of person, then maybe that wouldn't be such a big deal for you, but for me it was.  I have always been quite a deep thinking morose kind of person!  It takes a lot to make me laugh - I don;t know why, I wish I had a lighter spirit, but I just don't.  I have discovered that strong sunshine and warmth seem to help, so maybe that is why that particular day I was in a joyful place.
At this point in time my kids were 4 and 3 respectively, and a real joy.  They were in that chatty, fun phase where everything was an adventure and something to be discovered.  My son was into everything and boxes, cars etc all became something else in his imagination.  My daughter walked and talked at 10 months and at this point was telling stories and singing and dancing with the best of them.  Yes, she was strong willed, but we figured we were both pretty strong willed too.  
I had noticed a couple of small things during the couple of months prior to this day; her speech had become a little less clear, but she was hearing  Russian, Kz, Korean, German etc etc regularly, we figured she was just a bit jumbled up, and also her toileting had gone backwards a little, but thats not uncommon at 3 right?
Anyway, in the few weeks after this thankful day, I started to notice that her right hand wasn't quite right, her index finger wasn't bending properly anymore.  A couple of months after that and it was Christmas 07.  We were headed home for a 6 month homeleave.  It was to be a homeleave that became home stay.....

After we got home we went to the GP and showed him her finger.  He thought it was a plastic surgery issue and referred us, but that weekend we were talking to a friend who was also a doctor.  He very solemnly told us that we must go back to the GP as he thought it was a neurological issue.  That Monday we went back, the GP listened and within 2 weeks we were in a whirlwind of having MRI scans, lumbar punctures and more blood tests than I care to remember.  During the next month her arm seized up completely and was either bent uptight with her fist by her ear or bent out behind her in a very strange position.  She lost all control of her arm completely. 
It was about this time too that we went to her nursery school assembly.  The nursery teacher had mentioned a couple of times to us about her being strong willed and independent, but it was during this assembly that we realised that there was something markedly different between our daughter and her peers.  In the little presentation, on her face there was none of the normal apprehension that was seen on all the other children's faces, there was no fear of answering questions or shouting out answers, there was no understanding of wait your turn.  There was something clearly just not right.  We wondered to begin with whether she had just missed out learning some of the unspoken social cues that we learn naturally as we grow, because she had been in a different culture, but as the tantrums grew worse and longer and longer (45 mins minimum) we knew it just wasn't the norm.

After a few months the hospital established that she had some scarring in the basal ganglia in her brain and concluded that she had had either a stroke or some sort of encephalitus infection.  After we knew this we thoughtt that we were dealing with something that had got as bad as it was going to get and so we planned to return overseas to our home, ministry, friends and most importantly for the children, their dog and cat.  We booked our tickets to return in the summer and 4 days later we had a call from school (she as now in Reception).  Our daughter had had a seizure and had been rushed to hospital.  To be honest I don't really remember the day now, all I can remember is what others have told me.  She had been walking into assembly and carried on walking into another child when the line stopped.  A teacher told her off (thinking she was being silly) and she had gone into a seizure.  I will be forever thankful that her teacher in Reception was a wonderful woman, whose husband was a local pastor.  She put up with a huge amount behaviourally from our daughter that year and never stopped just showing love, her and her husband have become good friends.  

From that day on we started another whole round of testing, and trying different drugs and now 4 years on and numerous drugs later she is on a cocktail of 3 different drugs which still don't quite hold the epilepsy at bay.  

We still battled on, wanting to return to Asia, but eventually, after about a year of living in Limbo land (not a great place to be), we finally decided not to return.  
It was a huge decision, and one I still doubt sometimes.  I still struggle quite often with being back in the UK, but on the other hand when you hear a few months later that the religious affairs officials kept asking other in our company when we were coming to get our visas (after denying a number of others), I wonder whether our days in the country were numbered.  At least this way we have to opportunity to go back and visit, a denied visa would mean no return.
Eventually hospital staff stopped using the term seizures and started referring to 'her epilepsy'.  No one ever actually sat us down and explained what they meant and how seizures are different, or if there are different types of epilepsy - it was all a bit strange.
In the meantime, she was struggling through Reception, in her own world, fiercely independent, but struggling.  Constantly asking for hugs, but also tantruming for hours on end.  The only way to get her to stop was to wait it out til she was too exhausted.  We tried everything...one health professional after asking us to try different things (and witnessing the efforts) actually asked us if we had tried smacking her!  I tell you  - nothing made any difference!  We realise now that she had some major sensory issues but that can wait for another blog!! :-)  Eventually we got a Statement of Educational Needs, and diagnoses of high functioning Autism and ADHD.  It is a strange mix of relief and sadness to be given diagnoses.  One the one hand no one likes a label, but on the other, with a label, suddenly school staff had a better understanding of how to help, or knew what to go and read up about.  

And now, how do I feel about a daughter with ASD?  I love her!  She is quirky, she is different, she is socially vulnerable, she is loving, she is beautiful, she would fight to the death for something she believes.I worry, will she get anything out of school? Will she find love and not just guys that would seek to take advantage? Will she see God in life or will God/faith/eternal life be too abstract for her to grasp?   She sees the world very differently to me and makes connections in her thinking that I wouldn't make, but sometimes they are amazing, she is innovative in her thinking and I do wonder if one day she will amaze the world.  My fear is that our culture and education system will squash her spirit and self belief first.
 I guess my job is to make sure that doesn't happen! K x

Who are you?

Who are you?  Who am I?
I am a woman, a Mum, a wife, a sister, a daughter, a friend.  I am a Christian, a church leader, a teacher.
All of these things define me, but I am more than the sum of these labels and so are all of you.  

One of the things that defines me most is being a Mum of two.I have a son who is now 10, and a daughter who is 9 and has special needs. Specifically she has Dystonic hemipelgia (her right side is weak and her right arm and hand doesn't work at all), epilepsy, high functioning ASD and ADHD.  She finds life tough at times, but is an amazing inspiration too and so I find my mind is full with so much to think through.  

She is the reason for this blog.  Her name is Imogen Joy.  Imogen means 'to be thought of or dreamed of' and before I was pregnant with her (a whole other infertility story) a friend of mine had a dream with me feeding her.  When I had my first born, my son, my friend walked in to the room and said 'No! That's not the one!' and declared there would be another!  There was, just 14 months later!

She is complex and There are so many aspects to her needs, medical  - physio, OT, meds, botox, social interaction; schooling - teachers, TAs and how to relate to them as a parent, her interaction with her brother and her peers, academic progress, how to develop and learn to be independent, how do I know if I am giving my son enough attention as my daughter needs so much?, and oh so many more..... Then I have all the questions of how she fits in to church, and all the faith questions her needs raise in me, and in turn are beginning to rise in her, how do I protect her in an environment where people relate as if they are friends but may have only just met? - very difficult for an Autistic person to understand, how do develop a culture in our church that allows for ASD and ADHD? (which are on the rise and people with these conditions need to be welcome!  Jesus didn't say 'let the children come to me - except those who may not be able to sit still and be quiet!'  No, he was the most counter cultural, accepting of the vulnerable, teacher of the time, and that's what I want my church to be.)

But I want, no, need the opportunity to see past the questions, to see past the ongoing labels, appointments and diagnoses and to celebrate her, her joy, her vest for life.
So if you want to journey with me, to understand more the travails of a family with Special needs within, to encourage you in your own journey, or to celebrate and remember the reason we all have value, then join me!  It may not be pretty at times, in fact it may get downright messy, but come along for the ride!