Waiting and Wednesdays, D-day is here.

Wednesdays come along fairly predictably

It's generally every seven days or so.

You could even say Wednesday is a once-a-week sort of a thing.

This Wednesday, however, seems to have taken it's own sweet time. 

In some ways this last week has taken forever, the time between knowing when the appointment was and getting there. 

In other ways this Wednesday has taken 20 months - from first appointment to answers.

In yet more ways today has taken years - from first worries and wonderings to not just knowing, but hearing someone tell us "officially."

We had appointments at CAMHs today. 

It was always going to be tricky, because we had consecutive appointments for J and M.  Whilst one was in with us and the professionals, the other was left under the baleful eye of the receptionist.  As it turned out though, bringing both boys Hudls and some sweets meant that neither caused any stress when out there alone.

Today we had the reports from the boys ADOS assessments - well, officially we did.  We had seen the reports already, but the lady who sent them to us covered-up the fact that she had, and we respected that. 

With J going in first Dr Z took the lead.  She read us the concluding paragraph of the report, talked about the disastrous appointment just before Christmas, talked through the points noted at the various stages, and told us that J did indeed meet the diagnostic criteria for Autism.  She talked about needing all the different reports to be ale to see where his difficulties lay, and she complemented him on his coping strategies.  Then the play specialist who was also there (J, just to be confusing) talked with our J about what the diagnosis means, gave him the chance to ask questions, and made sure he was as OK as possible with things.  We asked for support with J's anxieties, and have some information to read, a course to go on as parents, and details of some support organisations that can help. 

Then we switched over, and it was M's turn.  He was already a bit unsettled, fidgeting and curling up in the chair.  J (play specialist) took the lead this time, and addressed M more directly - she asked him if he knew what was going on, and why we were there.  He gave half answers, and she expanded on them.  Then she gave a round up of the various reports / assessments, again reading concluding paragraphs to us all.  M, we were told, was easier to diagnose, and again a diagnosis of Autism was given.  I asked about ADHD as we'd filled in some assessment forms early on in the process.  That took both Dr Z and J by surprise, but they recovered well :) Looking at the Connors form, and picking out relevant parts of other reports Dr Z agreed that there were significant indicators of ADHD, and so that was listed as a co-morbid condition.  Again M was given the chance to ask anything he wanted, as were we, and then we said goodbye.

M didn't cope well with the goodbye - there were a few tears and he became very withdrawn, but that is just the way he reacts to things that feel like endings.  Fairly soon after leaving he was fine.

At this stage we have a parenting course to go on - it wasn't pushed on us, just suggested, but there are sections that cover anxiety and anger management, both of which I feel would be helpful - and we have details of support organisations.  The files with CAMHs are closed, but we can ask to be re-referred if we feel the need at any point. 

I do feel a little as though we've been given the diagnosis, and then left on our own, but I guess now we need to see what this course offers.  Dr Z said any further help for either boy would involve medication, and neither she nor we feel that is needed right now. 

So, it's time to read, see what this course covers, see what the support organisations can offer, and research.  I feel we've left things on good terms, if I find something CAMHs can offer, I have no qualms asking for it. 

The real gain though is that knowledge.  As a family we've bent around the boys pointy-bits for ever.  We know them, and love them.  We also know that working around the issues makes life easier and quieter!  So for us, the knowledge is a reassurance - we've not done anything wrong, we've not compounded anything - but for those outside the immediate family, I hope this will make a big difference.  M and J go to Cubs and Scouts.  I know the organisation has policies in place for helping children with SEN, now we have back-up to insist the group follow those policies.  Looking further ahead I think that M and J will need support if they want to take qualifications, this official diagnosis will help with that too.  In the more immediate term, when we go places there can be more recognition of their individuality - the fact they need a little more time, a little more space, that some things are harder for them.

Lastly, but really it should be firstly, the self-knowledge that they are not less, wrong or broken, just different.  Now we have that certainty we can help them understand their differences and hopefully understand their struggles too.

So, it may have taken forever to get here, but I kinda like this Wednesday . . .

Not the summer I had planned

So far summer has been . . . odd.  Normally we stay home, enjoy the garden and spend time with friends.  We like our parks and museums quiet, which isn't an option in the school holidays!

This year the weather has been so variable that we've not done much outside at all - no blisteringly hot paddling pool days, no out door dinners, only one water fight!

We've also been busy, so time at home has been our decompression time. 

We've been bowling, to a soft play centre and swimming with a support group, we've camped with the Scout group, this weekend we camp again with another group, and we've done a couple of home ed visits as well!  Our quiet summer has gone up in smoke - which is both good and bad.

It's good, because these have been days well lived.  Good friends and happy memories have been made.  Time has been well spent, and we've all enjoyed it.

Bad because, for me, the summer is a time of recharging batteries.  A few weeks with less expectations, less stress of getting places, less need to be on time.  It's when I build up enthusiasm to face projects and workbooks again, when I gather resources, find inspiration.  This year we have been so busy I think I'm going to hit September at the same point as I burn-out.  So perhaps we will have to take the first part of September as a recovery period - lets just hope for an Indian summer, so our quiet days can be spent in the paddling pool!

In other news, we have an appointment next week with CAMHs.  The follow up to both M and J's ADOS's.  I *think* I know what will happen, but I am worrying about counting chickens before the eggs hatch. . . I am also worrying about what will come next.  Still, worrying only borrows trouble from tomorrow as the saying goes.  And bridges must be crossed when they are reached.

For the moment I think it's time to be happy with where we are, the kids have had a fun summer, probably their busiest yet, they are enjoying "Our Island story" as a bedtime book, Minecraft has turned into some kind of challenge-based project, with J and A asking me to set tasks and then comparing their builds, M is reading a roleplaying source book at night (I don't think he knows I know) and L is writing a story.

Even when planned summer relaxing goes out of the window the children are learning and growing faster than I can keep track of, and really, I guess, that's why we do things the way we do :)

Summer success and plans

Houston, we have a problem . . . Well, I do anyway!

Last time I blogged I had to change the account access, and now I can't remember the password! It's set up on Gmail, which isn't the main email I use, and I'm struggling to get a password reminder sent anywhere I can read it . . . for now I can access the blog via my tablet, but can't get into my gmail account at all.  So I'm typing on a *really* small screen.  The prospect of which has put me off blogging for a while.  But it's about time I bit that particular bullet, so here we go . . .

Life is full of ups  and downs, and one of the downs is CAMHs - so far they've been pretty decent with us, only one dodgy appointment and the record was set straight when we wrote to them.  We are so close to the end of M and J's diagnosis journey, I can almost see the finishing post.  So of course this has to be the time our local CAMHs have been told to find 25% budget savings!  We know some of the people the boys have seen have taken redundancy or early retirement, so changes in who they are seen by is inevitable.  I *think* that worked in our favour when J had his ADOS the other week, two fresh sets of eyes seem to have seen things a bit more clearly than those who thought they knew him.  But the down side of this is longer waiting times.

It's been almost five months since M had his ADOS, and we haven't had a follow up appointment.  So my husband called (again!) and asked how things were going . . .

Now, I do understand that losing a lot of staff creates problems, and by all accounts another member of staff is often off sick too, but my understanding has limits.  So it was better that my hubby call, he's far more patient than I am ;)

He was told about budget cuts, longer waits, staff off sick, and then as a concession the lady he was talking to said she would try and send us the raw reports, although they "don't normally do that." A couple of days later we got the reports.  They have more than a few grammatical errors, and it's clear they are meant for internal uses only, but now I can see what happened in the two ADOS assessments.  I feel a lot happier :)

The reports are at great pains to point out that they are part of a larger process, not a diagnosis in and of themselves, and so I'm not going to share the content, suffice to say that it made me happy, then sad, then relieved.

I have no idea when we will get to the next stage, we're waiting to see the Neuro-development clinic, and hopefully when we do we will have a formal diagnosis for each of the boys.

So, that's M and J . . . The next big news is L.

Back at the beginning of May L began a paddle sports course.  He was very nervous, unsure of going at all, it took a lot of talking on my part, and a lot more pressure than I was actually comfortable applying.  In the end he went, with the proviso that he try for two weeks and if he hated it he could stop  going.

He loved it!  As far as I can tell he is actually quite good at the various paddle sports, and has passed the course with flying colours.  This week he has gone to Devon with the group, for four days of paddling mayhem :) At 15 1/2 he is the youngest of the group, but he is happy with that, and has made some good friends.  He's thinking of joining a local club and earning more qualifications . . .

Lastly little miss A.  She is enjoying the school holidays.  She is "playing out" for pretty much all the time we are at home, she has lots of local friends.  For A socialising comes easy, she is a little bemused by all the "best friends" nonsense, and it has been a bit of a shock to her how unkind some of the kids are to each other, but on the whole she is happy and thriving.

Over the summer we have a lot of activities booked with our local ASD support charity, we saw "How to train your dragon 2" with them on Monday, and are going swimming on Saturday.  It's shaping up to be a very fun few weeks :)maybe the start of the school term will give us a bit of a rest!