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!
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
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!!
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!
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.)
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.
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!!
