So for those who have been following along, I have posted about my daughter Callie needing glasses and us not knowing and her missing most of prep.
We got the glasses sorted earlier this year and we started some intensive work on catching Callie up to grade level. Between speech therapy for comprehension and tutoring and extra support at school Callie made a lot of ground!
She did pretty much the whole of prep and half of grade one in 3 terms!
Throughout this whole journey we somehow stumbled across Callie having sensory issues.
Now for anyone that knows anything about sensory processing you will know that children that have sensory issues can either need a lot of sensory information to process things or can only handle a small amount to process things. Too much or not enough can affect the way they learn and process information. Children who struggle with sensory processing issues can be over stimulated which can cause a sensory overload which can come out in a number of different ways. Behaviour and withdrawing among other things.
Callie is a sensory seeker, she needs a lot of sensory input to process things. She is a visual learner, so I have learned!
She loves swinging, rocking, fast moving, getting thrown in the air, jumping - she seeks these actions and activities.
Callie's teacher suggested that we see an OT and speech therapist to rule out any learning difficulties or delays so we knew exactly what we were working with and could work with her accordingly.
Whilst we were at her first OT appointment our lovely OT had a little chat to me about Callie and asked me questions about her early child hood development, behaviour etc. She also gave me a sensory profile to fill out on Callie. I filled the form out honestly and handed it back to the OT.
During all of this I had spoken to a lovely friend who's daughter had just been diagnosed as high functioning ASD (Autism Spectrum Disorder) formerly known as Asperger Disorder or Asperger Syndrome. (They have done away with the Asperger's diagnosis and children that are high functioning are just referred to as High Functioning ASD). Whilst we were chatting I brought up some of Callie's sensory quirks and we had a little chat. She messaged through a link to me to have a read over.
https://taniaannmarshall.wordpress.com/2013/06/22/first-signs-of-asperger-syndrome-in-young-girls-pre-school/
I clicked on to the link and started to read through, not thinking much of anything. The more I read the more I realised that this list was pretty much a check list of Callie. Her behaviours, traits and mannerisms over her 6 years of life.
After reading this I received my report from the OT. Stating that Callie was high sensory seeking and she recommended I see a Paediatrician and get Callie to do a WISC test through a Psychologist to test her Cognitive ability. Callie's fine and gross motor skills were completely fine.
So we did just that! My speechie and OT both did up reports, I did up my own report of sorts, detailing child hood behaviours, traits and mannerisms of Miss Callie.
The Paediatrician was very gentle with me, telling me it looked like Callie was HF ASD and that he just wanted Callie to see a Psychologist to do a WISC test (basically an IQ test) and ADOS assessment (used to give a diagnosis) to rule out any learning disabilities and to have Callie assessed to see if she was in fact on the spectrum.
This all happened over the space of 3 months! It was a lot for me to take in and process, I cried a few times. I was a bit of an emotional wreck for a couple months. Although I was the one who suspected originally that Callie may be on the spectrum it's still very confronting when seeing a Psychologist and receiving a report stating your child presents as being Autistic.
The Psychologist was ammmmazing! The most loveliest lady you'll ever meet, she was amazing with Callie and she was amazing with me! Callie's report although confronting was also a relief. Her comprehension levels were average, but everything else was in the superior range. The Psychologist said we didn't need to worry about her intelligence as she was actually extremely intelligent!
I also felt another sense of relief... Relief that I now had answers and knew that we could now work with Callie to help her strengthen her weaknesses and help her tap in to her intelligence and find her strengths and talents.
On the 1st of November Callie was diagnosed as having Autism Spectrum Disorder. I received a letter stating exactly that. The Paediatrician said she was high functioning and assured me she would get through life just fine. He also said a diagnosis just helps make those around her aware that somethings are a little more challenging and some of her behaviours and traits are just part of what makes her, her.
I've heard a few people talk about labels... "You don't want your child to have a label do you?"
There is this massive stigma about giving your child a label, like it's a disadvantage or that it's going to ruin their lives.
Here are my thoughts on having a label... It is a blessing in disguise! Is it confronting to begin with? Hell yes it is, it's scary, you go through all these thoughts about their future and how they're going to make it. How are you going to make it?
Then reality set in and I realised this... Callie is the same person she was the day before her diagnosis as she was the day after her diagnosis. The label changes nothing about the way Jared and I feel about her. The way her siblings treat her. Callie is still Callie, she will always be our Callie girl. ASD is part of her genetic make up. She didn't just wake up one day with Autism.
So why is a label a blessing in my opinion?
The school gets funding to help Callie with her learning, she has a specialised program set up just for her. We get to help make goals for her at school. The School has already set out one on one sessions with a teacher aide next year to work with Callie and help her to learn in a way that works for her. We get funding to pay for therapies to help Callie. This to me is a big ADVANTAGE! For anyone who has attended OT or speech therapy you will know how pricey these therapies can be. We also get a health care card for Callie which helps with medical expenses. A label to me is giving me answers to a lot of things that didn't quite make sense throughout Callie's life. I can educate myself to understand and help Callie with anything life might throw at her. I can work with her to help her with anxieties and struggles she has. We can work together to make things in life that can be challenging for her that little bit easier.
This isn't about me! This is about Callie and what Callie needs, a label means Callie gets the best help and advantages to help her through struggles she may have.
So what exactly is it that Callie struggles with you might ask? Hang in there, I am getting to that!
Girls on the spectrum are often referred to as Chameleons, they are amazing at observing and mimicking to fit in. They often fly under the radar as they are generally very quiet and well behaved at school. They are very good at holding themselves together till they get to their safe place.
For Callie that is me! In the car, at home, wherever I am! I am her safe place, I always have been, since she was a little child. Her whole first year at Kindy she would explode the second she got in the car. Screaming, kicking, crying, she was inconsolable most afternoons. At the time I was at a loss as to why she was so angry and emotional when the Kindy staff said she was so well behaved all day. It just didn't make sense to me as to why she would act this way when I picked her up. In hindsight I now realise she was keeping herself together whilst at Kindy being social and participating and doing as she was supposed to. This has followed through till present day although instead of everyday after school it might be once a week or once a fortnight. The Psychologist told me these meltdowns are her way of releasing the sensory overloads from school and the classroom etc.
The statistics for children on the spectrum is nearly 5 boys to 1 girl. Although through the research I have done and the information I have read there is more girls that are on the spectrum but just never get a diagnosis due to girls presenting so differently to boys and traits being written of as behavioural issues.
A few people I have spoken to since her diagnosis were very surprised when I mentioned she had been diagnosed.
If you were to meet Callie her outward appearance comes across very "normal" she holds eye contact, has beautiful manners, can speak very well and is social. She is extremely affectionate and is very cuddly. Fiercely loyal and protective of her siblings. Is very empathetic and caring. She has an amazing imagination and thinks very deeply. She loves to tell jokes and play tricks. She loves her baby brother and cares for him like nothing I have ever seen. <3
If you know Callie well or have spent a lot of time with her.. you would know she is very strong willed, takes things very literally. Does not do well with change, suffers from separation anxiety. Does not always do well with large social groups and will often remove herself to do something quietly by herself. When she plays with others it's generally alongside them not with them. She makes elaborate set ups but doesn't always actually "play". She has a very low pain threshold and gets very worked up when she sees blood. She suffers from anxiety but doesn't always know how to express it, this often results in meltdowns. When she has had enough socialising she'll quite often tell people to go away or just ignore them (we're working on this!) She likes to have one best friend and finds it hard to juggle friends. She is a collector, she has an extensive rock collection and has been collecting rocks since she was 18 months old. She loves to line things up, colour coordinate objects, arrange in height order. Stack and unstack - lot's of repetitive play. She gets very interested in certain topics and has an amazing memory with things she is interested in. In the class room she says that all the noise makes her brain feel fuzzy. She told me just recently that sometimes people get in her bubble and she just needs space. The older she gets the more she realises these little things about herself.
Since starting this journey I have realised there is no way near enough information about girls on the spectrum! There needs to be more awareness raised so that little girls on the spectrum aren't left in the dark and struggle through life never quite fitting in or feeling misunderstood.
Something that I found so remarkable throughout this was that Callie's favourite colour is blue, she wants everything to be blue. Autism awareness days at school were her favourite as she could wear blue. It's almost like she was in tune with what was going on the whole time! <3
What does Autism look like to you? Do you need to change your perspective?
