So to celebrate this, I am going to dedicate my blog for a whole month to families who wish to share their Autism Journey with you.
Some of these people have autism themselves, some are autistic parents to autistic children. We have teachers with autistic students and even Bloggers who want share their journey with me, which I am very grateful for.
When I first sat down to write this I realised that having a child with autism means I have so much to say and such a long story that I couldn’t possibly go into everything from birth to diagnosis and beyond. So I sat down and had a think about our biggest challenges and some of the things that impact on our daughter and on us as a family the most. The thing that stood out above all else was her sensory issues, so I thought I would sum up the trials and tribulations we have had and continue to have in relation to what she calls her ‘sensorys’.
It might sound unusual to anybody else, but in our house it’s commonplace to hear our daughter talking about her "sensory’s" or one of us referring to her having a sensory day.
Her "sensory’s” are such a big part of our lives and are present every single day without fail, in fact I would say that they are one of her most noticeable autistic traits. Although we are now at a point where we can manage this to a level where they don’t hinder her daily activities for the majority of the time and she is coping really well.
But it hasn’t always been this way.
When she was little, I would say around the age of 4, things that she had previously coped with or we had put down to age had started to become an issue. Her attention span was poor and she was struggling to settle in the classroom environment once she started school.
She is what is referred to as a sensory seeker.
So in school when she was expected to keep still she would be doing the opposite, moving at 100 miles an hour, climbing, jumping, skipping and anything else you can think of. She couldn’t just sit and concentrate, in order for her to listen and have any hope of taking anything in she would rock, spin, swing or fidget with anything she could get her hands on. To top this off, she is actually a mixed profile so as well as sensory seeking, she is also sensory avoidant! The way this displays itself with her is that she seeks out movement and deep pressure, but avoids light touch and certain noise, so a major problem she has is hating the feel of clothes on her skin.
It’s probably really hard to imagine this, but trying to buy clothes for a child with autism and sensory issues relating to this, and have her get dressed, can be one of the most challenging and troublesome problems we face! When she first started getting distressed with clothes we couldn’t actually understand how a simple pair of socks or dress could make her want to physically hurt herself just to get them away from her skin! She was too young to try and explain it to us and we did have some battles in the early days as we didn’t know any better.
This is when we found out about sensory processing disorder which can affect children on the autistic spectrum as well as others who are not. Once we understood, we set about figuring out what exactly bothered her and what she could actually cope with so that we could make life easier for her.
To be honest, as silly as this sounds, I think I went through a little grieving process with this.
I had to accept my little girl couldn’t wear the cute outfits I dreamt of buying her or have the pretty hair bows in her hair like the other children had, I was obviously putting way too much importance on that! At first we struggled to find things, but over time we got it so well figured out that now we more or less know exactly what she can and can’t tolerate and you will often see me or my mum with our hand up a dress in a shop looking for seams!
Half of the time she looks like nobody owns her.
She often looks like we’ve dressed her in somebody else’s clothes as she likes things tight and small and wears some things inside out, but she’s comfortable and happy and that’s really all that matters.
As you can imagine, things were not easy for her at school and alongside her sensory issues, as with other autistic children, she was socially immature, anxious and stressed. Although her cognitive ability is probably higher than average, she started to fall behind and as the years went on the gap grew between her and other children her age due to all of the other issues holding her back. Despite all of this, she is now nearly 10 years old and is currently at an amazing school that are nurturing and supportive and she is making great progress.
She is a real trier and although she finds life in general a challenge, she rises to it every single day and puts so much effort into everything she does.
As a family, I feel like we have pretty much got it sussed with her right now and I am actually not only really proud of her but proud of us for dealing with whatever life throws at us and adapting to it to make her life as fulfilling and enjoyable as possible! The next step will be the challenges we have to face when she goes to high school, along with her hormones!!
Although we know this won’t be smooth sailing, we will be as prepared for it as we can and adapt just as we have done with everything else that comes our way!