Reasons to be cheerful 25.7.13

Reasons to be Cheerful at Mummy from the Heart

The school holidays in Ireland are now in full swing: Most days I have organised something for the children, though my son's consent is always needed!  Today I have announced a pyjama day though, giving me time to reflect on the week just gone and take part in Reasons to be Cheerful...

I feel better


If you're a regular reader you'll know that last week I finally admitted that I was suffering from depression, and I went and got help. I cannot believe the difference.  I'm not ecstatically happy, but I do feel calm and capable and able to enjoy my days again.

The day I got to see the sea



A bit of bird watching, a bit of exercise and a bit of ice cream too!



I really miss days out at the beach, but right now it's not working for my two younger kids, so we did this instead.

We went swimming


That may not sounds significant, but it's actually 6 years since I've gone swimming with Smiley: it was getting more and more difficult.  But I know how much she loves her swimming sessions in school, and with such a long break I was determined to try again.  So with the help and encouragement of another special needs Mum, a date was fixed.

I approached it with much trepidation and epilation.  A long long list of things I might need was prepared, a new mummy swimsuit purchased, and Smiley's chair waterproofed for the duration.


The chosen pool was supposed to be disabled-friendly, which it is, but it does not really have the facilities for severely disabled people like my daughter.   But with the help of my friend, and two hunky lifeguards, Smiley was gently lifted in and out of the water and showered and cleaned and dressed.  I was a hot sweaty wreck by the time we left, but it was all worth it: she was the happiest and giggliest child in the pool.

And I'm going to do it all over again next week...

I felt so low


I've read about depression, read about the black dog, read about people unable to get out of bed in the mornings, unable to function.  That wasn't me.  I functioned, I always have.  I'm a coper.  And this year life has settled down and become a little more stable.  I've not been lurching from one crisis to the next, trying to firefight, to keep the show on the road.

What happened?  Well when the firefighting stopped, I began to feel overwhelmed by all the stuff that has happened over the past ten years, and how much my life has changed, how different it is from the family life that I had planned and worked so hard for.  Every day became a stress-fest, and I couldn't relax or sleep without a glass of wine, I needed constant pain killers for headaches.  I suspect  I would've taken anything to feel better, if it had been offered.  Yet I felt so guilty, I have three wonderful children (even if two of them do have special needs), a beautiful home, a job I enjoy, enough money, and great friends.

I went back to counselling, which is useful, and it means I can talk about stuff that I'm afraid to tell anyone else, but really it is only going to make a big difference long-term.  There's a lot to get through!

As I mentioned before, this summer is the most challenging yet - Smiley's summer camp has finished and I will have no respite, and she will have no school, until the end of August, while aspie boy says he wants to go out, says he wants to exercise, but is finding it so hard to tear himself away from the safety of the screens.  So I was looking out the kitchen window at the patch of blue sky above the rooftops as the waves of heat washed over me and bursting into tears every time I heard trigger words like gorgeous weather, Wexford, bank holiday fun, and of course anything that might remind me of my Dad.

So I was miserable, and I just wanted to hibernate, but I couldn't.  I have work to do, a house to keep and two children who have a lot of needs.  It's relentless.  But last Sunday - it's always Sundays! - I realised that I was definitely not being the best mother that I could be to my kids.  Friends rallied round and drove me to the GP on Monday morning.  I've always been afraid of telling officialdom that I am not coping, terrified of being judged, afraid of tales of children being taken away -- which could be worse for them than for me.   But of course the GP was lovely - I've been put on some medication, and within an hour my pounding headache was gone, and suddenly everything seemed to be doable - even without the help of wine and chocolate!  Perhaps I have now become a Stepford Wife after all....

I feel so stupid now -- clearly I should have gone to the GP months or years ago -- please don't make the same mistake as me, just because you are getting through the days does not mean that a little help won't make them better, for you and for your family.



Reasons to be cheerful 18.7.13

Reasons to be Cheerful at Mummy from the Heart


We have programmes


When everything went digital, Smiley's telly went blank.  She could still watch her favourite videos, but I wanted her to have a bit more variety than that, especially as I suspected that we would be spending a lot of the summer indoors, to keep my son happy.  So I got another Freesat box and this week the two of us were happily sitting together and looking at the news like an old married couple!

Family Meals


My son is now tolerating Smiley sitting at the table with us, so we can have proper family meals again. I couldn't do it before because he's afraid of catching germs from her.  He still is, but I think he is beginning to grow out of this fear.

Shopping and music


On Saturday my son's usual arrangement fell through, but he still agreed to go into town to keep Smiley happy!  Plans had to be changed but some shopping was done - for him of course - but cake was also involved, so my special girl was happy enough.

I made up for it on Sunday by bringing her into town for the Street Performance World Championships - a day late - and with all the music and excitement, she just loved it all.



Dancing to the Gospel Choir...


Summer on the radio


We've been spending more time in the car going places and there's nothing like switching on the radio and hearing one of your favourite songs.  Like this one.  And Smiley's doing her little head dance in the back, and I'm doing mine in the front, and you turn the music up and the windows down and it's hot and it's cool at the same time, and it feels like summer :)

Young people DO get jobs


I just heard the stunning news this morning that my nephew has landed his dream job as an officer in the Royal Navy :)

Thank you


And finally a huge thank you to all my friends who rallied round this week when I needed help. You know who you are xx


Trying to keep my sanity intact

Things may be a little quiet here over the next few weeks.  Smiley's summer camp has now finished, and my son did not attend his.

So from now until the end of August I will be very busy with my caring duties, RDI, work, and finding enough activities to keep two very different children happy and healthy.

I do not plan to publish another slew of moany posts, so I will mostly be taking part in the wonderful Reasons to be Cheerful linky, organised by Mummy from the Heart, and that is where you'll find my weekly news - or at least the good stuff!

There may also be a couple of guest posts, and more would be welcome...

Also I must also apologise for being very late in answering comments at the moment - I do appreciate them all, and I will reply and visit eventually.




Reasons to be Cheerful 11.7.13

So Smiley has been in summer camp for almost two weeks now.  It finishes tomorrow, but in the meantime I had great plans for mother/ son bonding.  This was not really a good plan.  Too many expectation, too much pressure.  Which of course leads to anxiety and tears in this house, from both of us.  But I have found some reasons to be cheerful!

Sleep


Something that I dream about.  Well I do get a certain amount, but I usually wish I had more.  But last Thursday was respite night for Smiley, and I slept for 10 wonderful hours....

My son the skywalker


Last Saturday I headed out to the country with my kids to the scarily named Xtreme.ie to meet a friend and some other autism families to take part in a spot of archery and sky-walking.  My boy had said he would go because he is really interested in taking up archery - it's on the "to do" list - but I wasn't sure how he would take to sky-walking, and after hesitating at the start, he did stuff like this....

Proud Mammy Moment!

Keep on running


My boy has decided that he is old enough to stay in the house on his own.  Just for a little while.  But it's long enough for me to get out for a short run every couple of days while Smiley is at summer camp. This is very good for my health and happiness!

Out to lunch


A headache that has been thumping away all week is a lot better today, so I was able to make good my promise to my son and take him out for a real Italian meal at lunch time.  He was very grown up, with lovely manners, and insisted on organising the dessert menu and the bill ....  I paid, of course!

And do you know what he said?

"I think this is going to be a really good summer, Mum."

Perhaps I'm starting to get it right for him :D

Reasons to be Cheerful at Mummy from the Heart

Autism therapy: from low arousal to RDI


Low Arousal


The invitation was quite a shock.  Even though I've been writing about all the difficulties I've had in parenting aspie boy, to see it down in black and white from officialdom was a bit different..

We would like to offer you a place on this course: Managing Challenging Behaviour

But it sounded interesting, and perhaps it would be useful too, so a babysitter was booked and I signed up for the three-day course.

And it turned out to be the best autism course I have ever been on.  Just a small group of mums, including a friend of mine, some dads, a slow pace, lots of time to talk around the issues faced by each family, and a wonderful presenter, who has an adult son with autism, and has seen it all.  We learned a lot about her story, how she coped in very difficult situations and she taught us safe and acceptable ways of physically disengaging in case that is ever needed.  Oh and the food was really nice.  And cooked by someone else :)

What was so amazing was that this course supported everything that I have been trying to do since Christmas:  reducing demands on my son, increasing the predictability in his life, making it all easier for him.   Yep, 'rollover' parenting is where it's at.  But sometimes you have to do what works for your family, you have to do whatever it takes to keep things calm, just to get through the day, and get everything done.  I left the course feeling more confident and less alone.

RDI


But the low arousal plan only got us so far.  As far as him sitting on the sofa on a sunny weekend happily playing with his consoles and me crying in the kitchen because I couldn't work out how to get myself and Smiley out of the house.

Something else was needed.

RDI = Relationship Development Intervention


And that explanation didn't help me either.  Nor did the websites I found.

But from talking to friends, and watching the progress of one very special boy, I decided to check it out further.

You see I want to have a better relationship with my son.  He's living in a happy little gaming bubble and he sometimes invites me in.  But I'm greedy, I want more than that.  One of the issues facing kids with autism and aspergers is that their social and emotional development is often way behind their actual age - they may look like teenagers but still have meltdowns, broadcast information rather than chat, and play side by side instead of doing things together.  RDI aims to close that gap.  And that brings lots of benefits.   I've seen them!

But I did have reservations.  Where would I find the time to fit an intensive therapy programme into an already busy schedule?  Well, as you may have noticed, blogging time has been severely constricted...  

And I had been told that the parental learning was by video.  Eeeugh.  I hate those 'useful' videos on YouTube that crawl along at someone else's pace.  Wrong.  It's all PowerPoint slides so you can fly though them as fast as you like!  And video is supposed to be part of the therapy programme.  You see the therapy mostly consists of working through various activities with your child, and these are normally recorded on video for your RDI consultant to review.  I just knew that at least one of us was going to have a problem with this idea.  Yep, my son said "no".  But my lovely consultant said "fine".  So we're doing the programme and I'm writing it all up, so my son doesn't even know he's getting therapy, just that his mum seems a bit ditzy at times.... Of which more in a minute.

In RDI land the plan is to encourage your child to look to you for information, advice, leadership and guidance and getting them to respond to emotions rather than instructions.  At the moment we're working on activities that work like an assembly-line, such as emptying the dishwasher.

Previously all the advice I had told me to say the following:

"(child's name) I need you to come and help me to empty the dishwasher now."

According to RDI theory that is just another demand that is likely to meet resistance rather than cooperation.

I'm supposed to say something like this instead:

"Oh dear I'm really tired and the dishwasher needs emptying and I'd love some help."

Much to my surprise, this approach has mostly worked!  And then for the emptying of the dishwasher you're trying to get your child to notice what you are doing, so you hand them one plate, then two, then pause for a minute, then maybe give them an apple and a plate (ditzy Mamma time) and hopefully they will look at you to find out what is going on, and then ask and laugh about it all!

It's early days, and I'm expecting a lot from RDI.  But most of all I hope to never ever again wish that I was a Stepford Wife.  I don't want to be a robot, I want to be a Mum.


Smiley: Then and Now

I made this for a project on the SWAN UK page on Facebook, but I thought I'd share it here too, apologies to those of you who have seen most of these photographs before...