When ADHD helps!

One of the symptoms of ADHD is impulsiveness, acting without thinking at all.  Well, yesterday it paid off!

We had gone to York to look at disability bikes for Imogen (see yesterday's blog!) and after trying out a few we drove into York.  It was a busy Saturday in the city centre and Imogen had not had her meds as we don't give them at the weekend.  Ironically, she had actually asked us if she could take them that morning and we had put her off.  As we walked through the crowded streets and down the Shambles we were constantly running after and then waiting for Imogen.  She was definitely on sensory overload and was not doing well; going from running out into the crowds to a moany 'I don't want to do this.....' said with very long vowels and leaning on Murray causing him to effectively drag her along.

We did get a bit of respite when we stumbled upon the York Festival of Faith - an African drumming troop had just started on the stage and Imogen managed to clear herself a little area as she stomped and jumped in her African dance for a few minutes.  It was interesting to observe that people all walked normally until they got into within a 2 metre radius of Imogen, where they suddenly fell into a strange African dance until they were through the area!  After dragging her away from the drums and then from the American mormon giving out sweets (I think she would have cleared him out of anything and everything he was giving away!) we ambled along to the Fudge Kitchen.  Now I remember many happy summers visiting York with my family and watching them make fudge in the Fudge Kitchen.  Never once did I think to ask if I could help. Never once did I cross the fence, don the apron and join the fudge makers.  Now I realise what my problem was....I thought!

As we stood watching the fudge maker at work, suddenly Imogen (without asking one of us first) yelled out 'Can I help?' -Who wouldn't want to help?!   And to my shock, then delight, then horror as I thought about the potential for problem, they said 'yes!' 

Twenty minutes later Imogen, and Jed (by then Imogen had also asked if he could help!) were clad in green aprons and straw boaters and turned into 'Chief Loafer' and 'Chief Creamer' respectively.  They had a great time, moving the fudge around to break up the sugar crystals (I know all the terminology now!) and gathering it all up.  The staff were all lovely and Tia in particular was so patient with Imogen claiming that the line of fudge they had created was one of the best she had seen!   After they had finished we all went outside to celebrate the 30th birthday of the Fudge Kitchen by singing and giving out balloons with vouchers inside.

Had Imogen asked me if she could help, I would have said 'no!' Had she thought about her arm and the fact that the creamer was a two handed job, she wouldn't have asked.  So I guess the moral of this story is that sometimes having ADHD pays off!

On yer bike!

By now, with children of 10 and 9 years old, I imagined we would be packing up our picnics famous five style and walking through the Peak District; stopping by a brook to sit in the warm sun for a while and then continue on our way over hill and dale, watching lambs gambol as we pass.... (This is the point where the sentence ends abruptly and you hear a needle scratch over a record!....)

The reality is that we have really struggled as the kids have grown older to do active things together.  When we have gone walking, Jed is miles in front, Imogen miles behind (generally with two grazed knees!)  Ball sports are a no no.  Going to the park we can manage, but we end up separated. Ditto with swimming - which is also a place that stress levels are heightened in her because it is loud and in us as she has had a number of seizures in the pool.  Soft play is also very loud, expensive and Jed is getting a bit old for.   I have to admit that even sledging we left her at home as we knew that she wouldn't manage more than once up the hill (she did have fun building a snowman though!) The one sport we did discover a couple of years ago a sport that we could do as a family and it levelled the playing field pretty well.  That sport was cycling.  

We had a Gator bar for Murray's bike and Jed and I had our own bikes cycling behind keeping an eye on Imogen.  There were a number of hairy balancing moments and a couple of falls, but in the main we enjoyed it.  For a few months we even cycled to school!  We got quite blase about biking as a family. Until one day when things changed.  We had been out for a ride along the cycle path near our house and we were almost home when Imogen went into a seizure and fell off the bike.  There were bikes, bags and people strewn all along the pavement!  I don't know what it must have looked like to passers by in their cars but it can't have looked good.  I have to say I was saddened that no one stopped to ask if we needed help.  Not because I wanted the attention or even needed the help as we were so close to home, but sad that it seemed that no one cared.  Many many cars went past, not one driver cared enough to stop.  I hope I have never been so wrapped up in myself that I haven't stopped - all too easy though isn't it?  I probably have. Anyway, before I divert myself completely...it wasn't a good experience!  Murray picked Immi up and walked to the house where she came back to herself while Jed and I walked the bikes over.  That was well over a year ago and it shook us all up a bit I think.  We hadn't felt safe cycling in the same way since then, none of us even suggested it.
Until today!!
Today we went to York.  There is a wonderful bike shop in York called 'Get cycling' and they also do bikes for people with special needs.  I had called them a few weeks ago and arranged to go and try out a few bikes just to see what might be a good option for us.  As we arrived in the car park the heavens opened with an almighty hail shower which thankfully didn't last too long.  We then went into the shop and were shown an amazing array of bikes, some with side by side seating, some with seats on the front, some low down with hand pedals, some tandems, some singles, there was even a round bike that could be pedalled by eight people and steered by one!
Jed had a go on a low recumbent bike and was quite put out when he had to get off!  We took the opportunity to go for a ride with 2 different bikes, one a tandem with rear steering.  This meant that Imogen was sat in front and we could see her.  The other was a normal bike with a piggyback trike on the back, a bit like the Gator bar idea, but just the rear wheels and slightly more stable with two wheels at the back.

It became clear almost immediately that the piggyback bike was good.  It was far easier to ride than when we had the gator bar as it was more stable and the tyres must have been better as it was far easier weight wise.  Just as clear was that we didn't like the tandem; Murray, who loves biking, didn't like the steering from the back and it was very cumbersome and not very practical for going places to ride as a family.  The only disadvantage that remained with the Piggyback bike was that we still couldn't see her and if she had a seizure without the other parent riding behind she would fall.  However, they had a solution to that too, there is a seat with a back rest and straps that can be fitted easily, and just to complete the package, pedals that are weighted so she doesn't spend ages trying to get them to the right place and they could make a glove with velcro so that her right arm doesn't go flayling out to the side as soon as she starts to pedal (as it was today!)

It is so good to know that there is a bit of family fun freedom on the horizon - no more endless 'How to train a dragon' DVDs for us!  Oh, and I almost forgot to say that at the moment that we passed three families of feisty geese with young goslings, Jed was very glad he was not on the recumbent bike!

http://www.getcycling.org.uk

SEN and Supply teaching

This week has been a busy one (hence no entries - sorry).  It has been made particularly busy by the fact that I was offered a few supply slots in a couple of different schools.

Imogen has also had a supply teacher in her class this week and has found it tough.  So I write this entry from both sides of the teaching/parent line....

 It takes Imogen a lot of time to get used to a routine, especially a challenging one like main stream school.  School is sadly not her favourite place in the world, however, in the main she manages and doesn't moan too much. But then suddenly there is a different teacher for a lesson, a day or maybe a few days and it completely throws her, bringing stress crashing down around her.
Supply teachers nowadays generally follow the plan that has been left by the class teacher (which means far less thinking on your feet - hurray!) But they obviously do not do things in exactly the same way as the class teacher, or have the systems set up for giving out, collecting in, how they do a particular task etc set up the same.  It is these small changes that Imogen really struggles with.  Last week a supply teacher was introduced to Imogen's maths group on Thursday. He will do each Thursday maths lesson for the next few weeks.  His first mistake??  Being male!!!  This integral part of being was a problem for the Autistic part of Imogen!  The second issue - being a stranger!  Now, we have explained to her many times that everyone is a stranger until you meet them, but in Imogen's mind this is definitely a black mark upon his name and unless there have been proper introductions her remains a stranger that should not be talked to!
Apparently, both last week, and this, Imogen didn't last much longer than 15 minutes in the class before her TA needed to take her out as she had got herself so worked up that she couldn't process the maths tasks that she would normally be able to do easily.  I am thankful for a wonderful TA who is able to tell when things are getting too much and take her to a quiet work area before she gets into trouble.  We talked it over on the phone afterwards and The TA, Immi and the supply teacher are going to sit down and have proper introductions before class next time, so hopefully things will improve.  So hard for Imogen - the stress of knowing that she didn't have her normal teacher on Thursday had a huge impact on Wednesday evening, her sleep that night and getting ready for school Thursday morning.  It seems somewhat like the iceberg; we only see about 20% of an iceberg, the rest is lurking unseen, under the water.  I think it is like that with Imogen; school, friends, clubs, church, probably all only really see about 20% of her difficulties.  The stress, the lack of sleep the needing to regress to cope at the end of the day, seizures, nausea, remains unseen by most - she manages amazingly well, I am proud of her.

As for me, I guess the silver lining (if you can call it that, in looking for the positive) for other SEN children, is that when I walk into a class of children that I don't know I am more aware now of the differing needs.  If I am told 'we have a child with Autism' I know straight away that it would be best if I go and introduce myself before the class arrive, and if possible make sure the parents know my name the day before so that they can prepare and keep reminding the child 'Remember, It will be Mrs Golder today, not Mrs X'.  If I am in the school earlier in the week in a different class I make a point of going to meet the child.   I automatically know now to ask if he has a visual timetable, weighted cushion, certain routines.  I know to give him choices rather than force an issue, spot the warning signs of a building meltdown and hopefully intervene rather than demand something is done in a certain way.
Or if there is a child with ADHD - I know I need to break it down into even smaller bite size chunks, be over liberal with the praise and stickers, allow them space to go and walk around if they are looking fidgety, be more aware if the rain is drumming on the roof or hand dryers are blowing.
Knowing the stress that having a supply teacher brings to Imogen, I am thankful that I can be an 'aware' supply teacher to other children who struggle with similar stresses and I urge any supply teachers out there, please don't forget that there are children who don't cope well with change - they are not necessarily 'naughty' children, they just need a bit of understanding - and, if you don't know anything about ASD, ADHD, etc - get in touch!!

Hama bead hell!

I am sure that many parents will identify with me (not just those of special needs kids) when I say Hama beads are a nightmare!  They are a blessing and a curse.  Love 'em and hate 'em!

Imogen, bless her (!) can concentrate for hours on Hama beads.  I learned very early on, that you decant a few into a pot for her to use otherwise the whole 1 litre tub (from IKEA) of beads ends up over the floor as she digs around for the right colour.

 I then soon progressed onto the 'do the whole thing on a tray' idea.  Trying to contain the spread, like a contagious disease, of Hama bead infestation spreading through the house!
Three days ago she started a coaster.  She sat at the kitchen table placing all her beads onto the tiny little spikes, concentrating and working hard to find the right colours to finish off her pattern.  The finished coaster would make a 10x10cm square and she worked diligently to finish her masterpiece,  (even through breakfast when she should have been eating - but that's another story!)  She finished and moved onto a heart with concentric hearts of different (clashing) colours coming from the centre.  
Before she went to bed that night she asked Murray if he would iron them to make the whole pattern into one solid sheet which would hold together.  He said he would.  The following evening she asked me if I would iron the square and the heart to make them into solid sheets which would hold together!  The following evening, she had a jolt and knocked the tray flying.  Hama beads went everywhere, and the two shapes as yet un-ironed flew all over the place.
OH THE GUILT!
How awful did I feel!  Both of us had promised to iron the shapes and both us had failed to do so and now all the time, effort and hard work Immi had put in had been ruined.  Yes, I spent the next hour (yes, a whole hour!) making a square coaster and heart shape!  They are now sat on the tray opposite me (as yet un-ironed) but at least back to the form that they were in when left by Immi.  I wouldn't mind if this was a one off occassion, but no!  This has happened many times!! You would think we would have learned by now - you place the beads, you iron the beads - IMMEDIATELY!
Anyway, I'm off now.....to get the iron out!

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.)

Those old toys....

Jed went on a school trip today that wasn't getting back until 5.30pm, and so we picked Imogen up and instead of going home we headed to some friends who live nearer the school than us.  We stayed for a while until Jed arrived back.  They had their two year old grand daughter with them for the afternoon and in the living room, as you would expect, there was an array of different toys that she had obviously been flitting between.  By the time I had entered the room Imogen was sat in the midst of the toys and had focussed in on the old Fisher Price garage.  I'm sure some of you remember it; the one with the car lift where you turn the little handle and the lift 'pings' as it goes past the floors.  Then at the top it releases the car and it rolls back down the curved ramp to the bottom.  It's a great toy, one I remember playing with as a child - I think our next door neighbours had it!

The next half hour held a number of realisations for me.  While the two year old busied herself around Imogen, playing with animals and saucepans and cars, Imogen remained solely focussed on the garage, turning the handle, lining up cars.  The nine year old playing alone, the two year old every now and then saying 'Mimi?' and holding out a car to Imogen.  When I spoke to Imogen she emerged for a moment and would interact a little, but in the main the child who should have been interacting was in her own world and the one who in child development terms would have been quite within her rights to play totally alone alongside another was the one reaching out, trying to interact.  I was sad.
Another thing I realised was that I do the whole, coming home from school thing wrong.  Imogen loved sitting on the floor playing with toddler toys.  Normally we come in the door and I give her a drink and ask her to get her reading book out, wanting to get it out of the way.  Watching Immi this evening I think what I need to do is swallow any pride I have and go back to those toddler toys, put something out for her to play with and allow her to regress a little each afternoon without the TV and without normal 9 year old pressure.  She needs time to be.  I need to allow her to be.

The Pink Straw

In our home, or maybe just in Immi's world, straws are sacrosanct!   You may only touch them by permission and use them at your peril!  Actually, there are levels of straw importance; green straws are actually pretty worthless, others are often allowed to use these. Yellow straws definitely have higher status and are less likely to be given away.  But the most precious of all are the pink straws, woe betide you if you take a pink straw without asking!  The other day I put a purple straw in Immi's drink, thinking it was a pink straw (I swear on a Dulux colour chart it would only be one, maybe two shades away!) I heard her muttering to herself, or more correctly, to the straw, "I don't want you, you stinky straw!" and saw her take it out, throw it in the sink and go and find a pink one from the straw dispenser - Yes, I eventually gave in a bought a straw dispenser for the pesky plastic creatures that were taking over my kitchen!

'Why have you allowed her to become obsessed with straws?' I hear you cry (Oh sorry that was me!!) IIt wasn't deliberate, but there are a mix of circumstances that have lead to today.  Firstly, due to the hemiplegia (doctors think she had a stroke when she was younger) the right side of her body is weak, this includes her mouth.  She finds it hard to pronounce words quickly, struggling to keep up with others when singing a song.  But also it seems to have made it harder for her to drink from a cup without a straw.  She is better now than she used to be, but still definitely finds it harder, choosing to have a straw if possible.  If she has a cup it will take much longer to drink, just little sips at a time and will most likely leave most of it.  So we got into a habit of giving her a straw when possible, just to get as much drink into her as we could.  This was especially pertinent when we discovered that one of the side effects of a drug she is taking for epilepsy can be kidney stones!  - Anything to get her to drink more is a plus!
However, little were we prepared for the HF Autism to kick in!  One of the aspects of Autism that can occur in some is obsessive behaviour.  I have to say, as I look at her now, I could imagine her obsession with the straws to be far worse.  She could take the dispenser everywhere, lining them up rain man style all around the house, thankfully she doesn't, she leaves them in the dispenser on the kitchen table.  However, we see it come out in an obsessional determination and mindblindness (another aspect of Autism that means they cannot see from another person's perspective) which tells her that the straws are hers, with a Gollum like possession that only those with powerful persuasive skills can draw from her!  And also that in a strange straw caste system, the pink straws are superior to any others, simply for being pink!  I say hurray for the purple and green straws that I can use as a negotiation device when we have visiting kids!
When we go out to someone's house, or to a cafe a lot of work and preparation has gone in over the years to get her to the point she is at now of being able to accept the answer of the host/waiter that they don't have straws, or (the worst of all worsts) they only have black straws! (What were they thinking?!)
I am proud of how she copes now with 'the straw issue' in public - although I do wish the person who taught her that the best way to get the paper off a McDonald's straw is to tear off one end and then just blow - sending it flying across the room, hadn't done so!!

Is it OK to miss drugs??

Facebook is full today of statuses (is that the plural of status??!)  from Mum's wishing the last few days of school holidays to go past quickly.  I have to say, I do not share this sentiment.  I don't look forward to losing the kids to school again.  I have enjoyed spending time with them, going to the park, snuggling up to DVDs, the odd board game, meals cooked and eaten at a more leisurely pace.  There is however, something I am missing...

Methylphenidate Hydrochloride (otherwise known as ADHD meds).  I mentioned these in a previous post stating that I love the fun Immi who smiles in the holidays while she is off the meds.  Now however I am getting to the end of my patience...to the end of 'please go and get dressed Imogen' for endless hours until I go and dress her.  Her homework over the holiday has simply been to read a little each day and to focus on 6 words to learn.  This small bit of homework we ignored the first week while we were in Scotland, but have attempted this week.  It has been a stark reminder of how things used to be.  An arguement and strong negotiation to actually get an attempt (I should work for the UN - my negotiation skills are well honed!) and then the effort, oh the effort of reading a sentence, just one sentence in one go without getting distracted by everything and nothing.

We also noticed very very quickly her need for proprioceptive stimulation (needing lots and lots and lots of hugs and needing her weighted blanket at night).  I like hugs but not that much and do find it waring having a 9 year old wanting to cling on all the time.  I waiver between wanting to tell her to stop, to feeling really guilt about telling her that I've had enough (a Mum isn't supposed to do that are they??)

It has shown us clearly how much of a difference this medication, that gets a lot of bad press, makes to our daughter.  We deliberated for many months about whether we should try it.  I am glad we did.

21st Century thanks!

We spent a fun, and slightly intimidating half hour in a Victorian classroom yesterday.  We were at the museum of Childhood in Sudbury; a fun place, made slightly scary by the fact that my childhood toys are now in display cases!

We sat there squeezed into old wooden desks and benches with a slate and charcoal while the teacher harangued us for various things.  I got told to get up earlier to plait my hair, one woman got sympathy as she had obviously been made to work until her fingers bled (she had nail varnish on). 'Have you never heard of Carbolic?' she raged at the man with the growing in beard and 'a boy with a ring?!' was thrown at Murray.

When asked to write, we had to hold up our implements and those using their left hand were suitably addressed.  (You were only allowed to write with your right hand in those days).  She decided however that as it was still the holidays she would allow this travesty - 'just this once!'  Now, at this point I began to worry somewhat.  Imogen had chosen to sit apart from us, not far away, within sight and shouting distance, but definitely out of arms length.  She had already managed to climb through the chimney - which I was very proud of her for doing, somehow she even managed to turn herself round inside and comedown the slope at the end feet first!  But I did wonder what she would have said to the teacher if she had tried to make her use her right arm, and also how I would have reacted as her Mum.  Would I have jumped up and protected her?  Would I have observed to see how Immi coped?  I'm very thankful it never got that far as the mix of hemiplegia and ASD probably would not have been helpful!

As the teacher started telling the class how blessed they were to be getting an education and how if they didn't obey immediately they would be in danger down the mines or in the mills when they started work, I drifted off and started to think about how limited Imogen would have been in that era, she would have probably been humiliated at school (if she had even been sent), her labels would have probably been very different ones and definitely more derogatory. Her prospects of work would have been very limited if there had been any at all - not good in a mill as crawling and nimble fingers are not her forte, not a great seamstress or laundress or maid....I guess her only hope would have been the advice given by the teacher, to find a wealthy husband!

The teacher was actually very kind to the kids.  Adults got told off for starting their writing early, but Imogen was overlooked as she, obviously trying to do it well, started before we were told. And as Ma'am went round picking on the adults for their scruffy handwriting my heart was in my throat as she looked at Imogen's slate....what was she going to say? How would she react?  I knew at best there would be some barely legible scratchy scrawl, but I could have kissed that stiff backed National Trust worker when she praised her and told her how beautiful it was!

I was thankful to come out unscathed, and even more thankful that Imogen came out happy.  But most of all I am thankful that she is born in a time when there is understanding, and help for people who have to struggle to achieve what others do easily.  When there is a medical profession that has more understanding of how to help many disabilities and diseases than ever before.  When there is technology that has developed aides to help physically with many tasks and with communication so that people who struggle with writing almost have no need to do so anymore, and people all around the world can share their expertise quickly and easily to develop products faster.  I know there is a lot to be sad about in the world; a lot of injustice, a lot of evil, a lot of unkindness, but there is also a lot to be thankful for  and I for one, choose the path of thankfulness.

Freedom at the park....

The park is a great place for freedom and fun.  The one near us 'The Arboretum' boasts of being the oldest park in England.  It is not for this reason that we go though. The reason we go is the play park.  It is right in the city centre in a very multicultural area and so the council has thrown loads of money at it.  As a result it is the best kids park in Derby!

It has a zip line, a play ship in sand with pulleys and tubs to fill with sand and pull up.  It has a swing with a bucket seat which is great because you can swing high without having to hold with two hands. It has a giant climbing rock in the centre which makes Jed feel like he has conquered the world!  It has the most amazing cafe that does great (and cheap) jacket potatoes and is run by members of the deaf community (there is a large community of deaf people in Derby as we have the Royal School for the Dear here).  It has an art centre that 12 times a year put on free kids activities and it has a water area that in the summer spurts out fountains of water at random moments on a soft surface (I wonder if we will get any weather when the kids can use it this year!)

I feel like we have found a secret little gem, and if you ignore the odd group of street drinkers, I do wonder why it is not more used.  But the reason I mention the park today is not just to rave about the great city centre of Derby, but to tell you about Immi. 

She loves this place and it challenges her, but it is a moment when she is definitely more than her labels!  She gets up on top of the ship in the most unladylike of styles, but she does it.  Plenty of kids would say, 'that's too high, I can't get up' and just not bother, but oh no, not Immi, she wiggles and squirms until there is enough of her body on the platform to turn over and get up.  She sits in the rope cage while Murray pushes it round and around, enjoying the sensation of dizziness and then screaming 'now go the unsick way!' wanting him to push it the other way!  
With this park, as in nearly every park, I go round with my heart in my throat, waiting for her to climb on something that is just a little too much for her and fall, expectant of this I hover with an emergency bag full of plasters and antiseptic wipes and cream!  But something in the mix of equipment in this park  is different, it is just the right stage for her; challenging, but enough stuff that she can access so that she feels like she achieves too.  There are many parks that don't quite do this, they are either too babyish and she gets bored or the equipment is too difficult and she gets frustrated.
So, thank you Derby City Council - you got this one right!

The appointment.

So we made it to the Paedicatrician's appointment (actually 45 minutes early as I had written the time of a cancelled appointment on the calendar instead of the new time - doh!)  When we finally went in they said it was a shame we couldn't have come to last week's appointment as that was the joint clinic with the neurologist!  What????  It is true! I had been sent two appointments, one a week after the other, and so being a dutiful and mindful user of the NHS I called the Paediatrician's Secretary and asked if they really wanted us at both or whether we could cancel one.  She said that we should cancel one, obviously (now) presuming that they were both the same - turns out they weren't and of course the one we chose to cancel was the wrong one!  It is so rare we get to see the Neurological consultant now it was a disappointment, but after getting over this it was a good appointment.

The doctor had thought about some of the things we had asked last time, including a question about Lead poisoning, so that was helpful.  We fed back about the ADHD drugs and about the Botox.  It was interesting/humourous watching a male Middle Eastern Doctor chasing a 9 year old girl around the room because he wanted to see her arm.  If only he had actually asked her before getting out of his chair to chase her then she may have said yes.  But to approach a High Functioning Autistic child without explaining why you want to have a look - just won't cut it!  In the end he decided to just let the physiotherapist do the follow up!!

One of the ongoing decisions we are trying to make is whether to try something called the 'Ketogenic diet'.  It is like a very strict, measured out Atkins diet, high protein and fat and hardly any (measured Carbohydrate).  It is a diet which has been developed to try to treat Epilepsy and is used in some children whose seizures are hard to control.  It works on the premise that if you limit carbohydrate in the body it basically puts the body into starvation mode.  This increases something called 'Ketones' in the blood and it has been discovered that raised ketones can prevent seizures - phew!  That's how I understand it anyway - if any of you have a clearer/better understanding or experience of the Ketogenic diet please do get in touch.  The interesting thing is that this is how Immi would naturally choose to eat - she really doesn't like carbohydrate that much and would eat a whole pack of butter if I let her.  Friday is 'Fried egg day!' and she would rather have a lump of cheese than a packet of sweets, so maybe this would suit her.

Imogen's seizures are still not well controlled despite trying many different types of epilepsy drugs.  The cocktail of 3 that she is on at the moment is making her so tired and we had mentioned in the past that we didn't like her being on 3.  Under the Paediatrician's advice we had tried to drop one called Keppra, but each time we tried to drop it the fitting increased.  So we talked this over with the doctor and epilepsy nurse and decided that we will try to drop out another of the drugs (Epilim Chrono).  We have to drop it one small increment a week at a time so it will take at least 6 weeks.  So that is the journey we are about the embark on over this next term - drop out the Epilim and if we need to increase the Keppra, whilst keeping the Lamotrigine the same - got it?  Clear as mud?  Good!   Now we have to go and chat to the GP as the letter from the Paediatrician never gets to the GP before we need a different set of drugs.  We started to get to know a GP at our new surgery, but didn't realise she was covering a maternity leave, so now we need to decide on a GP within the surgery and try to see that doctor each time - no mean feat in this surgery when you can only call in the morning and not make prior appointments! Hmmm.

In September we will have a joint appointment with the Paediatrician and the Neurologist from Queens Medical, Nottingham.  When we meet she will decide if there has been enough of an improvement or if the meds change fails (again) to control the seizures, we will try the diet. 

So do come on the journey with us - we could do with some good friends on the way!

Paperwork, paperwork, paperwork....

I have just spent well over an hour looking for a piece of paperwork that I was wanting to take to Immi's Paediactrician's appointment tomorrow.  Can I find it? NO!  I don't do well with not finding stuff - I desperately need a bit of empathy from those around, but near me is a dangerous place to be during a search, so Murray and the kids are downstairs keeping their distance! Searching for stuff is like the most unnecessary use of time ever!!!  (So a bit of cathartic typing is probably just what I need!)

Now I know we all have paperwork - it is the bain of many people's lives, but the parent of a child of a special needs child, or I am sure any child that has been through hospital treatment will know the extent.  We have a full size filing cabinet in our study the top drawer holds all the household stuff; bills stuff, bank stuff, insurance, car stuff etc and then, one whole drawer is dedicated soley to Imogen's paperwork! There are folders for the numerous medical departments we have attended over the years ranging from neurology to speech & Language, pyschology, etc etc, there are folders for different aspects to do with her education and the statementing procedure and reviews, there are folders for different charities that we have been in touch with over the years.  Overall in this drawer there is a grand total of 24 files of varying thicknesses, and yes, I did just go and count them!!  At some point in the near future I am going to have to 'face the drawer' (spoken in a X-Factor voice over kind of voice!) and archive some of the paper work from a couple of years ago.  (I think for now I will avoid that thought though!)
 Now generally I am very organised with her paper work, I have had to be or I would just die under the pile of paper!  But this time apparently I wasn't!  The report I was after is missing - well and truly.  I have been through every file; the ones marked school I have been through 3 times as that is where I thought it was! (No, I don't think I have OCD!)   My heart goes out and I find myself wondering how parents who maybe also have special needs, or struggle to manage themselves cope.  Do they get to appointments?  Do they manage to order the right meds from the GP at the right time?  Can they give feedback to the doctors when they ask?  I guess they just do the best they can. 

So that is where I am too - just doing the best I can.  This time I can either truly go insane or admit defeat and go back when school starts again to ask for another copy of the report.  Either way I won't have it for the 6 monthly appointment tomorrow which is very frustrating. Anyway, I am off now to make a list of the things I want to cover with the doctor tomorrow and file the growing pile of paperwork that is on my desk from the last few weeks!

It's me!

In honour of getting past the 1000 views post I thought I would add my photo to my profile! What a treat - I know!!! ;-)  So thanks everyone for reading, I'm quite overwhelmed with how many people are reading,  where you are all from and the encouraging comments through the blog, FB and Twitter (have to admit to not really getting the hang of twitter yet though!)  I hope it helps you in all your social circles, many of which I'm sure many are touched by varying special needs too.  K x 

My bro - My hero! (The Sibling)

I can't go any further without passing comment on 'the Sibling'.

The sibling is the one that puts up, in love, with so much rubbish dealt out by the brother or sister with special needs.  The sibling is the one that watches on while their brother or sister goes through whatever pain they are in.  The sibling is the one that ends up often sitting in hospital waiting rooms or filling their own time because their parents' attention is demanded by the other.  The sibling is the one that despite probably not wanting to, innately carries a feeling of responsibility for his sister which he just can't put down - Jed - is no exception.

Jed is 14 months older than Imogen and in the main is great with her.  He is a 10 year old boy, so he has his moments, but mainly he is very patient with her.  We try hard to get him out to do the things that he should be doing as a 10 year old boy - climbing mountains, sledging, biking, swimming etc, but I have to say these things are not as often as we (or he) would like and never as a whole family.  But I don't think I have ever once heard him complain about missing out because of his sister.  

The other day, I walked into the living room to find them playing a 2 player Wii game.  Immi as usual had her character running around aimlessly falling into the river and I heard him say 'Don't worry Immi, I'll help.'  He directed his character over to hers, picked 'her' up and carried her to where they needed to be!  So often this is how he is with her in life too.

I have lost count of the times I have said to him 'Don't worry Jed, you are not her parent.  I will find her/do it/help her (delete as appropriate!)'  His sense of responsibility has risen over time, but I guess there are a few moments I can put my finger on that probably played a part in defining this. 
As I mentioned in a previous post, probably the first of these things was seeing for himself her first seizure in school.  A couple of years later at Christmas time we lost her for a few minutes in the local shopping centre.  I had taken them to see Santa and afterwards we were headed to a shop to choose a drink.  I was holding her (good) hand on one side and Jed's at the other (he was probably 6), she let go of my hand for a second to move a hair or something and at the same time I said to them both 'Let's go over here and get a drink'. I started to move over, through the crowds, the few feet to the shop.  We got to the shop and I turned to Jed, 'what drink would you like?' I asked, then turned to Immi.  No Immi. NO IMMI!  I have never felt such horror before.  I didn't know whether she had come into the shop with us and was wandering - as is her norm or whether she had continued with the crowds in the mall.  
I ran round the shop and couldn't see her, shouted at a shop assistant to watch Jed and ran out into the corridor yelling for Imogen , looking like a deranged woman, asking everyone if they had seen a little girl.  After what seemed like ages (but was probably actually only a few minutes) a little old lady said to me that she had seen a little girl further down the corridor.  I ran down the slope and out of the doors to the street at the end to find Imogen talking to a group of teenagers.  I was glad to see that they looked concerned rather than amused but Imogen looked as happy as Larry, not concerned at all that she was talking to complete strangers and had no idea where her Mum was.  I think she would have probably continued her adventure given half the chance!
We walked back to Jed, who was beside himself, absolutely bawling his eyes out in the shop.  The assistant had given him a drink and some chocolate, but he wasn't interested, he was so worried. The following year I got the 'Santa photo' out from that day and his response was 'I hate that photo!' I hadn't made the connection, but for him, that was the day we nearly lost Immi.
Then there have been swimming pool moments.  Immi loves the pool (in the summer), but we watch her like a hawk as she has no sense of danger and also could have a seizure and slip under.  Most of the time I or my husband stay in the pool right beside her, but on holiday there is the odd time where we have sat on the side and watched, able to get to her quickly if needed.  We realised though, that Jed gets there quicker.  Last summer, they were in the pool where we were staying and she went into a seizure.  I have never seen anyone react so quick.  He was there in a flash, and carried her out of the water.  He chose this year after finishing his swimming levels to join the Rookie Lifeguard class.
Even yesterday, we went out with some friends with 3 children.  All the kids went into the pine forest next to the path to play, but after a minute or two when we called the boys appeared but the  girls didn't come.  We had a few minutes of searching and yelling for them before they finally emerged - totally unaffected!  But after that moment I noticed that as we walked along and the children ran in and out of the trees, Jed didn't go in, but instead always had his eye on his sister, watching, making sure she didn't go too deep and yelling at her to come back if he thought she had gone too far. There is a strange mix of emotion in me, immense pride at his love and compassion, guilt for not being good enough to assuage his fears and not have to carry a sense of responsibility and sadness for him not being able to be totally free.

I know up to now, I have made him sound like an angel.  He's not!  There is an area in which he struggles and that is in her over affection at school.  He has reached that age now where hanging out with his mates means things have to be 'cool'.  Imogen is anything but cool.  She is bouncy, fun, vibrant, definitely not cool!  And I have had to tell her on a number of occasions that she can hug Jed at the start of school and then end but leave him alone at lunch and break time (which in her head means that he is the meanest brother ever and he 'NEVER' plays with her, which I know is untrue as all through the snowy days I know it was Jed that played with her and watched out for her on the playground!)

I think I would have probably snapped by now, and I know very well that Jed has learned how he can easily press her buttons to get a reaction, but in the main he is great with her, giving her time to process when she needs it, watching over her and encouraging her when she so often deals out rubbish upon him, claiming she never wins, when she has won the last 3 times but just not this time, or that he 'never' plays with her!

But today, as I ask Immi what she would like to say about Jed she says 'Jed, my bro, he's my hero!' Couldn't sum it up better myself!

What will I be?

As a parent I know that part of my role is to help my children find what they are good at, what they enjoy, what they are gifted in, with the hope that they will find what they would like to do with their lives that will bring them purpose, satisfaction and fulfillment.

Any teacher will tell you that those who are short on attention, often excel in sport or the arts.  We search.  We search for ‘the thing’ that will be the key to unlocking our future profession.  And Immi is no exception – I search....

She is dramatic – but can’t cope in a role that needs set lines or for you to follow certain rules about when you are on stage and when you are off!

 She is crafty, but a lot of crafts need two hands and become incredibly frustrating after a while.

 She is sporty, she loves to run, but she is terribly unbalanced and terribly tired.  After our trip to the Paralympics last summer we did go to Athletics as she wanted to try long jump, but it was a Thursday evening and she simply couldn’t manage it. 

She loves animals, but most work with animals involves outdoor work. She loves being outdoors but hates being cold – a problem in the UK!

However, Immi is quirky, and caring and arty.

Immi loves art and personally I think (although probably I am biased) that her art is quite commercial.  When she is in a bad mood she has recently taken herself off to draw a picture.  She has drawn lovely birthday cakes for cards which are quirky and cute. 

She also loves hospitality – she will spend hours laying a table for guests and try her hardest to make beds and prepare for people.  As I write she has been half an hour in the bathroom – cleaning.  I have yet to see if it is any cleaner or whether I will have to go in and do another clean, but for now she is finding fulfillment in helping. 

I know there will be a niche for her somewhere.  I know her choices are more limited, but there will be the perfect fit somewhere.  My two children have such very different searches on their hands – Jed can try his hand at many things and find what he enjoys.  Immi has to wait, bide her time and then the right thing will be perfectly clear.  In some ways I wonder if her path will be easier to find, like how sometimes standing in a huge Tescos with a billion choices of Orange Juice is overwhelming, but go to Aldi and you get the choice of one – and it is perfectly good!

A friend about 5 years ago had a picture (like a daydream she believes to be from God) of Imogen being like a golden jigsaw puzzle piece and that she has a very specific role to fulfill in her life that is a perfect fit for her, that no one else could fulfill in the same way.  I am holding out for this – she is amazing, just waiting for the right fit.  We are told in the Bible that God plans to prosper us and not harm us, to give us hope and a future.  I am holding to this promise.

If I could pick one thing to fix - this would be it.

There is nothing quite so paralysing as watching your daughter have a seizure.

Immi's epilepsy started about 4 years ago now.  She was in Reception with an awesome teacher, who became a great friend. There were no signs, no headaches, no aura.  One day she was walking into assembly at school and when the class stopped ready to sit down, she just kept walking into the child in front of her and then went into a seizure.  Her brother who was in year one at the time watched the whole thing; her uncontrollable shaking, the teachers' panic, wide eyed friends around.  The ambulance came and took her to the hospital, we met them there.  She was already undergoing tests for her Dystonia, so this just started another round of testing and the start of what was to be a long journey of trialling different drug combinations to try to control the seizures.

After that day she continued having seizures which lasted at that point up to about 2 or 3 minutes.  I cannot explain to you the feeling of helplessness that comes over you as a parent watching that.  I am so thankful for prayer, that I can lay my hands on her and pray for the Holy Spirit's control.  We definitely started seeing a shortening of duration when we started praying like this.  
Our son in the early days would wander off during a seizure, he just couldn't cope with watching Immi go through something that he couldn't do anything about, so he would run off to his bedroom, and come back when it was over.

At the beginning all the medical staff refer to her seizures as seizures, but suddenly somewhere down the line someone started to refer to them as Epilepsy.  We don't know who or when, but suddenly she had epilepsy.  No one sat us down and explained the difference, no one sat us down and told us what to do.  We didn't want the diagnosis and so we didn't ask.  It was actually months later when I finally asked how long a seizure should go on for before you call an ambulance, and 'can the short 1 minute (seem like eternity) seizures cause damage in her brain?'  Apparently if a seizure goes on for 4 minutes that is when you call an ambulance.
Every time we return to the hospital they ask detailed questions about the time and nature of the seizures.  We keep a diary now of when and how long they last; whether it was a seizure or a jolt (not the proper name, but it is like an electric shock goes through her just once), or just being sick - also linked we think.  But they also ask us, was it one side? Was it her whole body?  which way does she look? etc etc.  What I really want to do I yell at them, 'I'm her mother, I don't stand back an observe her at these moments!  I am willing her to get out of it.  Everything inside me is screaming at it to stop! I don't notice which arm is twitching, or whether it is both, all I am aware of is that she is uncontrollably shaking, stiff as a board and I want her well.'  
But I don't.  Instead I cast my mind back to the last few seizures, all indelibly etched in my mind, and try to become an observer and tell them what they need to know.

There was one seizure where I realise I did become an observer.  It was our son's swimming lesson in the local pool.  He was getting changed and Immi and I had gone to reception to sort out the next term of swimming.  She cannot stand still, so I told her she needed to stay at least where I could see her, there were about 3 others in front of me.  To the left of the reception was an area set back with tables and vending machines, she wandered in there looking at the crisps in the machines.  While she stayed at the left I could still see her.  Suddenly I was at the front talking to receptionist, arranging the lessons.  Imogen had moved to the right, I could no longer see her, but I was in full flow and would only be a minute, my mind was in the lesson arranging.

Suddenly, there were sirens going off and staff running everywhere, it took a second and then I realised. It was Imogen.  I ran round the corner and saw 2 mothers of other children and  2 staff workers all knelt on the floor around a person shaking, jerking, moving uncontrollably.  It must have only been a few seconds, but in that time I was suddenly an observer, suddenly I was watching an epileptic person having a seizure, like watching a programme on TV.  I saw for that second, what other people see when she is having a seizure.  Horrid in its nature, but separated, for a split second there was distance, and then it kicked in, I rushed over; embarrassed that I had left her for a second, angry (I don't know who with, myself? God? the Mum's who were helping?  The receptionist for taking so long to get to me? I don't know, but I was!) I politely explained that this was part of life for us and that she would be fine in a few minutes; waited for her to come round, waited for her speech to return, waited to see if I needed to change her clothes for her, waited to escape the concerned looks and curious stares.

I hate epilepsy, I hate the unknown nature of it.  I hate what it does to my daughter. I hate that she can't have a bath or go swimming without me watching her like a hawk, never leaving her side.  I hate the fact that at present she is taking a cocktail of 3 drugs which don't quite control the seizures, but do make her incredibly tired; so tired that if she slept every hour there is she would still be tired.  I am amazed at how she never complains, never asks me 'why?', she just looks up at me after a seizure with a big smile, searching her brain for my name, searching her brain for any words.  Rebooting, ready to get going again - she is amazing.

As for me - If I could pick one thing to fix - this would be it.

The baggage we would love to leave behind...

Where am I?  

In the middle of Scotland in a log cabin in the middle of no where.  In fact so in the middle of nowhere that I am writing in Word to copy and past into my blog when I get some wi-fi!

It is lovely to be away from it all I’m sure you would all agree, a chance to unwind and not think about the stresses that lean on you in every day life.  Some however, we carry everywhere...

Imogen’s right arm has been much looser since the botox injections a few weeks ago, so much so that she is trying to move things with her arm, it normally ends up having the effect of getting stuck on something and not being able to get free – a drawer handle, a coat sleeve, her own hair (or even worse – someone else’s!)  But it has been good to see her trying to use some gross motor control.  Today we went to a coffee shop, it was a lovely little place, bright pink interior with all sorts of different types of tea (wonderful if you are a tea drinker – I’m waiting for coffee heaven!)  We ordered drinks and two pieces of cake to share, therein followed a strange dance of Mum and Dad taking it in turns to catch forks, then large cake pieces, then fork again, napkin, close catch on the milkshake....this went on with nerves getting more and more frayed, not only with the fear of a spillage but also with realising by now that others around have seen her arm flailing, realised that her remarks are a little ‘unorthodox’ and are now probably wondering what is wrong with her.  We decided to just feed her.  Calm.

Then this evening, at the log cabin hotel, Imogen was eating her dinner; chicken goujons, chips and peas.  Now, at home we have a plate with sides as peas in particular are tricky to eat one handed.  Imogen valiantly chased the peas around the plate with numerous falling off the front, then the sides, eventually we asked for a spoon, and we tried the ‘you hold the spoon, I’ll hold the knife (to push them on) trick’ but by this time appetite was fading and in the end peas were left discarded as Imogen decided there were more interesting things to do, ie retire to the lounge area where a couple had just come in with their Border Collie.  She petted the dog and kept them entertained for a good 10 minutes telling them she was saving up for a puppy and that she had a German Shepherd Dog in Kygyzstan, until they very politely decided to move to another area of the lounge...

After dinner we decided to take a family stroll up the hill to take in the view over the highlands nearby.  However after about 100metres Imogen had other ideas .  She wanted to go back and go to bed, however we so often pass over things or one of us misses out and stays with Imogen we decided, maybe unfairly I don’t know, that we were going to do this.  It really wasn’t far – about 400 metres in total, on smooth road, up a gentle incline.  At the beginning of the walk we had seen two deer, well they soon ran off I’m sure as Imogen decided there was no way she was going further. ‘No Way!’  She ranted and raved, she hated us, she was leaving this family!  When she turned and said she was going back, we said ‘oh no you’re not’ and basically carried her up the last 100 metres where we reached the flat, and the most amazing view. I remember back to when I was at school, one year we went to Wales and climbed Snowdon.  I remember struggling, I remember moaning, but I also remember getting to the top and thinking ‘Wow, it was all worth it!’, but sadly, this didn’t seem to happen with Immi. She did stop moaning and even decided to put her tongue away and smile for the photo when she was asked!  But what hard work.  I long for being able to go out for a long walk, taking in the sights, the sounds, the fresh air, a whole day, stopping somewhere with sandwiches, getting covered in mud, pink cheeks because you have been out in the wind.  Jed is so ready for that, jumping from rock to rock, he is ready for the long walks form which you emerge tired but content.  

But today we did something as a family, we got the top of a hill, yes, it wasn’t far, yes we had to drag her up the last part, but she did it, she achieved and we did it as a family and that is good.