Trials, triumphs and turkeys

It's almost over!

The Christmas period brings so many difficult moments, potential catastrophes, things that need to be actively managed in order to keep everyone calm and happy.  But it's nearly done now.  And I feel so relieved :)

This year, so far, has been our best Christmas ever.  Things have mostly gone smoothly, and that is in no small part to some very detailed thinking and planning. 

I would love to be able to be spontaneous about all this, to just decide at the last minute that we will go and visit someone, or have them here, but having been there and tried that, it just doesn't work for us.

Our Christmas started with a visit to my husbands family, a couple of weeks before the big day.  M had asked if we could arrange to see his cousins on that side, and this was the only way it would work, because most of them would be visiting other sets of Grandparents over Christmas.

We went down for lunch, and it was crazy :) To be fair there were a lot of people in a fairly small house - 9 adults, three little kids, and my four bigger kids.

It was loud, crowded, and chaotic.  J wasn't coping very well, and spent a while with his hands clamped over his ears, before moving to a quieter room.  M disappeared after we ate (with his favourite uncle, N), the little kids went to play upstairs, and things calmed down.

There were issues - M and J got bored  which is never good then later some singing toys came out and that made J uncomfortable again, but all in all things went pretty well.  The younger cousins are getting to the age now where M, J and A know how to play with them, and there were times when we had five children giggling and playing nicely :)

The next point of Christmasy cheer was a visit to Birmingham - to the German market.  We had a good day, visiting the new library (which is awesome! will do some pics in another post)  and we picked up some more presents for cousins.  M, A, my husband and I went on a Ferris wheel - L and J both decided it was too high for them, so they waited in the library.  M was a bit obsessive about it, he wanted to go on, but was scared, but wanted to conquer his fear, but but but . . . eventually we got on.  After the first turn M stopped clinging to me and began to relax.  He said "this isn't so bad.  I'm not scared!"  I was though!  The only reason I went on was because A really really wanted to, and I didn't think my hubby would want to take her.  By the time it was clear Hubby *was* going on, it was far too late for me to back out.  Still, I survived . . .

The next big thing was the Christmas tree.  We all went out to choose it - that's a bit of a family thing now - and we got it upstairs into the living room without too much fuss.  M and J decided on a name for it (just don't ask!) and we decided to let it settle overnight and decorate it in the morning.

After the younger three go to bed L, my hubby and I usually watch TV or play a board game together.  That evening we just sat and watched the kittens.  All three of the kittens seemed to think we had bought them a new toy . . . they climbed the tree, wrestled in it, raced to the top, scratched their claws on it, drank the water, chewed the branches, fell out of it, climbed it some more . . . we were rather worried that the tree would be bare by morning so we moved it to the spare room overnight.

One of the things I have learnt over the years is not to surprise the boys.  We decided that the tree might not make it, and we had nowhere kitten proof to put it that was sensible (we could hide it in the spare room, or block the stairs, or put it in the kitchen making cooking harder . . .)

The next morning we sat everyone down, showed them the pictures of kittens up the tree.  Showed them the needles on the floor.  Told them we thought the kittens could destroy the tree, then asked for ideas.

We all talked it over, and decided we wanted the tree in the living room like it always is.  We made sure the kids knew it might not survive, and decided to give it a try.

The decorations were subtle this year - we deliberately only put on robust baubles, and not too many.  By now most of the baubles are on a shelf near the tree, as the kittens love to play with them, but so far only two have been broken.  The tree has lost a lot more needles than I'd usually expect, but it still looks OK, which is a good thing, and really rather surprising :)

We have a second tree - a hold over from our old house.  It is an artificial half tree designed to hang on the wall.  In our old home we had no space for a big tree, and having this on the wall kept it safe from crawling babies too.  In our new home this one hangs downstairs in the dining room.  The downstairs tree has lots of baubles on - kind of balancing out the upstairs tree :)

We only decorate two rooms - the living room and the dining room - and I think that helps the boys not to get overwhelmed.

After the decorating came visiting my parents on Christmas eve.  Sometimes visiting my folks can be stressful too - my Dad is now wheelchair bound and there isn't a lot of space to move about.  Along side that there are the usual extended family / ASD difficulties to navigate.

We were able to meet up with my big sister and niece, which made things easier - more people to keep the boys occupied, and my sister, A, bought some books with her which the boys enjoyed.

The visit was as good as they get really - a bit boisterous towards the end, but mostly happy and calm.

Unfortunately J got very anxious that evening.  He was worried we had got him the wrong presents.  That things would go badly.  He just couldn't settle.

My husband and I were trying to wrap things (why did we leave it to the last moment?!?) and J kept yo-yoing.  There were tears.  There were long cuddles.  There were deep and meaningful conversations.  Eventually there were shouts and grumps too.  When we finished wrapping things I went up to cuddle him - a last resort so I would get *some* sleep.  He finally settled down at 3 am, and was asleep by half past.

Christmas day was good - everyone got what they wanted and was happy, dinner was on time and cooked properly, relations were phoned and thanks passed around.

Then a boxing day visit to hubby's parents - much smoother as it was just us, them and uncle N - and we were pretty much done :)

The final Christmas visit was my other sisters family visiting us. We've not seen them for a long time, and I was nervous that the crazy boys would be hard work, but again all went well, and everyone was happy :)

This year, more than any previous years, I have put a lot of thought into how we do things. 

Our visits were generally middle of the day ones - no really early starts, and no late evenings.  That helped, because the middle of the day is when we get the most relaxed behaviour out of M and J.

I also planned to keep things short, but with the option of extending things if they were going well.

We did one "thing" per day.  My parents and my in laws live in the same direction from us, it saves a lot of time to go to one, then go on to the other, but that was meaning that the second visit was more stressed for all sorts of reasons.

We made sure the children were not left alone with people they don't know all that well - this one was a hard lesson to learn.  My husband and I (and to a big extent uncle N) can see when the kids are getting stressed, or over excited.  We can help them to step back and calm down (mostly!) As much as they love our children, most of our extended family (on both sides) just don't really understand them or their difficulties, so things can get out of hand very easily and quickly.

Lastly, we took back-up plans :) We made sure we had something for the kids to do if they got bored or wound up, and we used specific activities to help calm things down.

I would love to just turn up at family gatherings and catch up with people I've not seen for ages, but I need to be much more present and conscious that that would allow.  I've learnt (the hard way) that the time to relax is at home where it's just us.  Other places require much more attention and concentration.

By recognising that, and making plans, we survived with just J's Christmas Eve anxieties.  Which is a minor miracle, and a major blessing :)

There is much more to say, but that can wait for another post, or two . . .

Happy New Year :)

Not what I was hoping for

I've been trying to write this post mentally for a while, but I still can't quite get things straight in my head.

Sorry if it's a bit jumbled!

So, on Wednesday J and I went to CAMHs for an appointment with the Neuro developmental team.  We saw Dr Z and V - V was one of the team that did J's group assessments.  We were referred to the team as a result of the group assessment.  Unfortunately my husband couldn't be with us as he had a prior commitment, and rescheduling would have pushed things back by two months at least.

After the group assessments we felt that the team had seen the happy side of J, and a few of his issues, but not "the real J", so this was the opportunity to try and give a better, clearer picture of things.  My husband and I spent some time talking through points I needed to cover, his observations and my own, so that both our perspectives could be heard - I went into the appointment with a long list of difficulties, ready to cover as much as I could.

The appointment didn't go so well.

For the first time at one of these sessions I felt like I wasn't being listened to, I tried to convey how things were, but it just didn't seem to work.  J has a lot of difficult behaviours, a lot of issues, but somehow each time I brought something up it felt like it was glossed over or it turned into me trying to justify why or how this was "worse" than a "normal" 9 year old.

It really didn't help that J was minimising things, saying "I don't do that", or trying to change the subject at various points.  He also got very upset - tearful rather than shouting - and that distracted everyone in the room.  We all tried to get him to go to the playroom, or to look at the fish, but he wanted to stay.  Dr Z was very concerned about J's emotional state - maybe that is why she stopped listening?

We talked through pregnancy / birth / babyhood / toddler years / current issues, then J and I went out to the waiting room and Dr Z and V discussed what they had seen and heard.

We were called back about five minutes later, by which time J was smiling and giggling.  He can be very mercurial - from joy to misery in the blink of an eye.

Whilst they can see some issues, they are unsure of any diagnosis - apparently the clusters of issues are not right for ASD in their eyes.  They want to do an ADOS and then look at all the information they have again, and work out how to proceed.

Apparently the fact that J likes to be tickled makes AS unlikely, and there are other dissenting issues too.

When they said that I was stunned. 

I asked them to ask me about things they had expected to see that they felt were absent - because I'm worried I left out details, it is so hard to cover *everything* in an hour - but they were unwilling to do that. 

I told them that all the follow up reading I had done at the paediatricians suggestion led me to the conclusion that it is an ASD. 

I asked them what else they thought it could be - they were unwilling to give *any* real reply to that.

I told them that I felt unable to help J, and that I was unwilling to go through this process and be left with a negative diagnosis and no help, which they commiserated with and gave non-committal "we'll see what happens after the ADOS" answers to.

Dr Z did say that J's emotional imbalance and anxieties are a concern, so perhaps it's good that he got so upset.  But that is small comfort really. 

So, now, we have ANOTHER wait - probably two or three months - for the ADOS.  We will have to hope that the ADOS is accurate, and gives them the missing pieces, but I'm not convinced it will.  J has done one before, and it's an environment he thrives in - last time it was three adults and him in a quiet dimly lit room, no pressure to engage or finish tasks, and just moving from one thing to another very quickly.  I hope the protocol for a nearly 10 year old is different to that for a 6 year old!

Then, after that?  It depends on how things turn out.  I am firmly convinced J is Autistic - I have read extensively about the difficulties and issues, I've networked with other parents and found so many "yeah, J does that too" moments, spoken to other people who know J and are experienced in the field, and every time the response is "yes."  It seems so self evident!

So, if the ADOS brings clarity, then awesome!  If not, then we need to see what CAMHs suggest next, but I will not go quietly.  If they think "it" is something else, then I will learn about this something else and if it doesn't fit I will fight for the right diagnosis.  If they think there is nothing, then I will fight for another set of observations, a different team to assess him, because the issues are there to be seen, they really are!

A while ago I heard the term "warrior mums" - for those who fight relentlessly on behalf of their children.  Sometimes we need to fight for education, for allowances to be made, for services to be provided, for the right diagnosis.

J needs this, and I will not let him down.

I'm ready to fight.  Hard.

Is Santa Autistic?

After an interesting thread on an ASD support site, this sprang to mind . . .

"Is Santa Autistic?"
A little boy cried,
"Of course he isn't"
I quickly replied,
But then I thought a bit more
As I wandered away
Was there anything in it?
Could there be more to say?
"He's making a list,
He's checking it twice"
So the old man is thorough,
That's really quite nice. . .
But the next bit's a worry,
Those things on the list
What about "sometimes" or "Sorry"
All those "in between" bits?
The red suit?  That's an issue,
The same suit every year?
repetitive, compulsive . . .
Something sensory here?
Avoiding other people,
That's a red flag for sure,
Climbing down the chimney?
Can't he just use the door?
And always, yes always
We hear "Ho ho ho"
Maybe Santa's non-verbal?
I really don't know . . .
So perhaps he was right,
That inquisitive young boy
Maybe Santa's autistic,
but he brings us great joy

By me, Jenn Impey, 18/12/2013