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Heartbreaking loneliness

I have to admit to feeling like a bad parent at the moment…..

Our Soldier has started to show some interest in interacting with our Angel but in true autistic style he much prefers his own company and in fact really struggles in normal noisy children’s company and takes himself off to a quiet spot. He certainly appears happy with his own company although I do always have a slight niggle that underneath the autism there is a little boy who wishes things were different….

Where I feel very guilty is that Angel really wants a wee pal to play with! I know most people reading this will ask themselves, what’s the problem? Doesn’t she have friends from nursery, school, locally? Parents of other children with learning disability will most likely be reading with a knot in their stomach.

In the early days when Angel’s difficulties were becoming obvious I was googletastic and read many times about how lonely life can be for special needs children. I’m not sure I really believed it as at that time we were part of a fabulous local mum’s group and another group of friends we made through NCT.  Angel was Angel, she was part of the group, never short of a play date. Her difficulties grew as the group grew up and whilst the other kids and parents didn’t really understand what it was like for us they were immensely supportive and inclusive.

We moved city before Angel was 3 and left behind those groups of friends.  Thank goodness for Facebook many of them remain my friends today but Angel and her wee pals have taken their separate routes in life…….

She often asks for someone to play with and clings to my hubby and I to interact with her, play with her dolls, pretend cook, do art, all the things that a normal little girl should be doing with her little pals…. It’s absolutely heartbreaking sometimes!

We have moved to an Area with quite a few young kids locally. It’s city centre though and a couple of streets away from one of Edinburgh’s large private schools so a lot of local kids attend there, a very different world!

When we moved here Angel attended a supported nursery place on the other side of the city and a private mainstream nursery near our house on a Friday. In the 2 years of nursery she was not once asked on a playdate or to a birthday party, already the gulf between mainstream and special needs was obvious.  Angel was well known and seemed to be well liked but she was different….. It broke my heart for her to be so lonely when she was still being asked to birthday parties back in Bearsden where we are from (although through time thatunderstandably stops as the kiddies move onto nursery and school, build their own sets of friends and we are no longer local). I’ve lost count of the number of times I have been in tears regretting the move away from our understanding and accepting network,

She has moved on to special school. Here I wished for another little girl like Angel that she could form a bond with. My eyes were opened quickly that the majority of children with additional support needs are actually boys. Angel joined a primary 1 class of 10, 8 boys and 2 girls. There are some lovely little boys in her class and she has had a few play dates which is good and one little boy in particular but unfortunately they are in different classes this year and see less of each other. In a special school the children are bused in from all over the City so even meeting the little boys is not straightforward.  The little girl in her class she has struck up a wee friendship with at achool and they greet each other with little hug. I have sent notes to the mum/carer, invited her on playmates/ to parties but she’s never responded. Another thing I have learnt along the way that sometimes the parent/carer of a special needs child has their own challenges and that you may never strike a relationship.

I continue to host birthday parties, Christmas parties and ask along friend’s kids, school class mates and Soldier’s nursery pals and it is lovely that there are some little friendships there in these settings.

What I long for though is for Angel to have a proper little pal or two that she so seeks….

I will keep searching for another little girl like Angel and hope they form a bond! My latest venture is to find an inclusive rainbow’s pack. Even that’s not as easy as if she was a mainstream kid, our local rainbow pack has said as she doesn’t attend the school she can’t attend,……

It’s my dream to see my Angel playing happily and growing up with a little pal. Something most people don’t have to think about, it just happens…….

Xx

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The truth about tiredness…

How many times have I heard friends moan they are tired as their little one has been up during the night sick or is having a phase of being up during the night… Regularly I take a deep breath whilst thinking ‘if only…’  I hope one day that never actually slips out! After all, relative to their normal life they will be tired and to be perfectly honest I wouldn’t wish our lack of sleep on any of my friends!

Angel is now 6 and soldier 5. For the first 3years after angel was born I lived with a constant headache through lack if sleep. For those parent’s reading this think back to the first 3months of parenthood and how tired you were waking up constantly through the night and even up all night quite frequently and imagine it never actualy stops… This is what we and many other special needs parents have to learn to live with.

A combination of both children requiring oxygen at night time and pulling off their cannula’s regularly, angel having ADHD and both having sensory processing issues including hyper sensitive to noise. What does that really mean though? It means

  • having to wait until the kids are asleep to put on their oxygen cannula then waiting again to turn the oxygen concentrators on so the air blowing up their nose doesn’t wake them up then up, down, up, down to reapply using the same elongated routine when they sense the air and pull it off!
  • Angel going through periods where the oxygen routine would be a welcome rest. At the height of Hyperactivity Angel can go 2 full nights up buzzing… As she doesn’t stay still for 10 seconds it’s like a hurricane has swept through our house. As she has learning disability and no safety awareness constant supervision is essential.. After 2 full nights of no sleep it’s like flying to Oz and back again the next day, jetlag city!! How Angel keeps going I will never know, she’s like the Duracell bunny!
  • Sensitivty to noise means – no kettles, tv on silent, no crisps, whispering… I’m sure you are getting the picture, if not they are up and the routine begins again…

I can only describe the permanent tiredness as like living with a hangover…

We can trully understand why sleep deprivation is a form of torture…a good night is 4-5 hours sleep and not necessarily all at once. Not something we would wish anyone else to have to experience but know many other families out there quietly cope with the same challenges too….

Sleep well tonight folks x