Saturday, August 6, 2011

SNSS: Unusual is not the word!

Today I have another Irish Mum here as my SNSS guest: Blue Sky of  Looking for Blue Sky. She has a complicated family with three children and an ex-husband.

Of her three children, the eldest daughter, Angel, is a lovely typical teenage girl; her younger sister, Smiley, has cerebral palsy and is non-verbal; and the youngest, Aspie Boy is, obviously, on the autism spectrum. Like I said. Complicated. 

Some days the intersection of one child's physical needs and another's emotional needs (or meltdowns) make life nearly untenable. But somehow Blue Sky finds a way through. Because, well, this is her family. 

She is a wonderful, gifted writer, and I have been reading her regularly since nearly the beginning of my sojourn through the SN blogging world. Furthermore, she helps out with the social media side of Irish Autism Action, aiding Jen, who was my other Irish guest from a few weeks past.

So come now, sit with me and listen to Blue Sky weave the tale of her family so beautifully, here:

Unusual is not the word! - by Blue Sky

It all began with a little girl called Angel. Adored by her Mum and Dad, she happily stayed with her childminder during the working day and then played out with her friends on the long summer evenings and stayed in playing board games in front of the fire when the nights closed in. She came everywhere with us and just seemed to enjoy our company.

It was an idyllic start to her childhood and almost everything I could have wished for.  But I wanted her to have brothers and sisters, and so I had two more children at four year intervals. And that's where life got in the way of my plans.

Into Angel's happy shiny world were thrown not one but two children with special needs. Smiley came first, and she was born at 27 weeks. She has cerebral palsy and some other undiagnosed disorder. My handsome boy had a perfect start in life but was diagnosed with aspergers at age 8, soon after my marriage broke down.

As Angel says, she can stop a conversation about families stone dead when she explains about hers! So how to describe the unusual dynamics between the siblings in this family? Well I'm going to be very logical and explain them one at a time...

Angel and Smiley
It was a huge shock to our little family when my waters went at 24 weeks on my second pregnancy. Smiley was born two weeks later and our lives changed completely. It soon became clear that this little girl was heading for a bumpy ride in life. She was in and out of various hospitals for her first two years, but Angel never complained.

Right from the start she took a huge interest in her very little sister and was a regular visitor to NICU. She talked to her, sang to her and even waved her magic wand over the incubator to make her better. If she was disappointed in having a baby sister who could not crawl or sit or toddle or talk, she never said, nor has she ever given up hope that Smiley will achieve some of those milestones one day.

As soon as she learned to smile my special little girl realised that this was her trump card. With her infectious giggle and innocent wide-eyed smile she makes everyone love her: and the more attention you give her, the more love she gives back.

Angel chats to her and plays with her every day, and Smiley's face lights up as soon as she sees her enter the room. But it can't be always easy. I know that Angel worries about her sister's future and who will take of her when I am no longer able. And I'm sure she gets frustrated with the amount of time it takes to do anything or go anywhere, but she never blames her sister.

Smiley doesn't complain without good reason, she loves attention but will only demand it when she needs something - like a drink, a trip to the toilet or a change of DVD. Despite all its limitations Smiley is so happy with her life and that inspires almost everyone who knows her, including her sister.

And yet. Angel wanted a sibling that she could do all the normal stuff with, so when I asked her if she would like another little brother or sister even if it meant she had to give me a lot of help, there was no hesitation and no happier child when my baby boy was born and he obviously had none of Smiley's problems.

Angel and Aspie Boy
As a baby he was perfect and so so cute, but also demanding and cranky and odd...he couldn't seem to control his body properly, he had unusual interests and was very late to talk.

I was worried, but most people just thought he was 'being a boy', and oh she loved feeding him and playing with him and watching him.

But as he got older his behaviour got more and more difficult. He got so angry and upset when things did not go his way, we would all end up in tears. Once he was diagnosed with aspergers at least we knew why, but not what to do...on good days they still get on well and laugh and joke and gang up on me by chatting in Irish. They still do things together - cycling, watching DVDs, popping out to the shop for messages.

But none of this happens on the bad days, and there are too many of those.

Aspie Boy and Smiley
In my naivety I assumed that my new baby boy would just accept his older sisters. They were already part of his family, so why wouldn't he? Well I was completely wrong. As a small child he did play with Smiley, but was also clearly jealous of all the time and attention that she needed. As he grew older and started to understand he limitations he began to be fearful of her.

Now he largely ignores her.  Once in a while he will find a toy that he thinks she may like and give it to her.  Carefully.  You see he still believes that he can catch cerebral palsy and is obsessed with not touching her or anything she may have handled.  Meltdowns can be triggered if she sneezes anywhere near him.  This can be difficult to avoid as they sit next to each other in the car.  And in the car he can't escape from her.

She may not be able to get out of her seat but she causes problems in other ways.  As she has got older she has got louder.  She is always happy and always smiles and laughs.  But now she screams with delight and for a boy with sensory issues this is almost unbearable. 

We have sound-blocking headphones for him but its not always enough.  So another reason why we spend so much time at home.  Luckily home is now large enough to position the children at almost opposite ends of the house, so the only time they really get close at home is at meal times and I face her away from him....

The one promise I made to myself was that Angel should never feel that all the effort was being made for Smiley... and then later for Aspie Boy.  She had to see her parents making superhuman efforts for her as well.

So I was delighted when she started gymnastics and needed lifts and leotards and a trampoline and help getting to took up time, and meant dragging the kids out in their pyjamas some nights to collect her, but to me that was important. She did other sports as well, but the gym became her second home and the gymnasts her other family.

My job in PR also helped to make her feel special, because while we didn't go on foreign holidays and other stuff that families take for granted, I was able to provide experiences and freebies that were the envy of her friends and sometimes they got to take part in photoshoots or meet celebrities, so it helped to even the scales. In return she has been a second 'parent', a playful big sister, a pram pusher, a carer and a cleaner, as well as the best daughter any mother could hope for.

Putting them all together...
As a group the biggest problem I have with my children is their different interests. Angel is sporty, the other two are not.  Aspie Boy wants to stay in the house, Smiley wants to go shopping. Many activities worked well though when the children were younger: when Smiley was more portable and Aspie Boy more amenable.

We used to be able to go to the beach for a couple of hours before Smiley got bored, and when she was very little I'd dip her in the sea...thought she tended to turn bluey-purple very quickly! Aspie Boy has only been to the beach once in the past 18 months and insists that he will only go with a friend. But guess what?  Most of his new friends have aspergers and do very little except play video games.

Luckily Angel is now grown up and can look after herself and do her own thing as well as providing a bit of babysitting, so that I can take the other two out separately. Their Dad also does some activities with Aspie Boy when he sees him.

So yes we're an unusual family and life can be interesting at times for all of us including Angel. She's gone along with almost everything with good grace, except for the meltdowns.  They upset us all.

If we could just find a way to stop them then family life would be pretty good...


Blue Sky has painted such a vivid portrait of her special, unique family here, I feel that I know them personally. I love how her love and concern for all of her very different children shines through in every word she writes.

Aspie Boy is currently going through a very difficult time, with nascent adolescence setting off a string of meltdowns that are becoming increasingly hard for Blue Sky to manage. My heart goes out to her, as she copes with the pain both and practical issues issues of this unfortunate development.

So follow her home to her blog, Looking for Blue Sky, and read more about her family and offer her your support. You will want to read this poignant post about wishing Smiley would speak, and this intense post about one of her son's first meltdowns.

Also read this short but devastating post about Blue Sky's wanting her old, sweet son back.

Finally, you should follow Blue Sky on Twitter, and go "like" her on her Facebook page.

Thank you so much, Blue Sky, for writing so beautifully about your family and bringing us into your world. It is my pleasure and honor to call you my bloggy friend.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.