30 March 2017

Autism Awareness - #YourJourneyMyBlog - Beginning The Diagnosis Process

The month of April is best known for the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for children and a magnificent feast to celebrate the resurrection of Christ. To many people April is Easter, they plan, they organise, many months in advance sometimes, Children have the time of their lives, gorging on chocolate, receiving gifts from extended family members, but to me, April is Autism Awareness month.

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. 

 Our Journey:
 How it all began...
Lou was born in the spring of 2012, I had a fairly normal pregnancy and was still able to work full time with children, the job that I’d done for 8 years. On the day that Lou arrived I was calm and collected, I took everything in my stride. But then there was a problem. I remember a yellow piece of paper and the words:
 “We need to deliver this baby right now,”
Then all I remember is the lights of the corridor as I was transported into surgery. Lou’s heart rate had reached a dangerously low level.
I don’t remember a lot else at this point, except trying not to cry with the relief that Lou was here safely, and the relief that I felt once she let out that ‘all important first cry!’ I struggled to contain my laughter when the surgeon urged me not to cry as he was completing the stiches after the C-Section, and as he said “Whoa Mamma” it made me chuckle and I moved more!

I was extremely relieved the next day when I was allowed to take Lou home to the comfort of our own house. I found that Lou would settle to sleep better if she was swaddled tightly in a blanket.
I soon noticed that Lou had a problem with her milk, she was what I would call a ‘sickly baby,’ she found it difficult to keep her milk down and had Colic really badly. We would later find out at 10 months old, that Lou was in fact intolerant to all dairy products, along with egg. But it took a lot of questioning on my part to get to this point. Lou was a late sitter, she sat up at around 8 months old and she crawled at 11 months, and walked along furniture just after her 1st birthday.
By 17 months, I was concerned that she wasn’t walking and was referred to a child Physiotherapist, who reassured that if Lou wasn’t walking by 18 months, that they would then have her back in. We noticed that she seemed to be in pain when she stood up and walked with her feet slightly outwards, it would take us until the age of 4 to finally find out that she has ‘hyper mobile’ joints, which explains also, why at only 2 years old, and suffering a fall from only a small height she broke her arm. I will explore Hypermobility later, in a chapter on its own.
From her birth until 15 months old, myself and Lou spent all our time together, she was my ‘little friend,’ and we explored so many places together, parks, swimming, toddler groups, you name it, we did it! I went back to work when Lou was 15 months old, I loved spending time with her, but I also missed my job in a nursery with 2-4 year olds very much. We moved house from the countryside to the city, to be in walk-able distance to my work and Lou went to a wonderful child-minder for part of the week and for the rest to a nursery attached to the local college. Both settings loved having Lou, they both told me that she was wonderfully ‘spirited’ and definitely knew her own mind! Something that was very different to how I presented as a child! I found it increasingly difficult to be at work full- time with a toddler at home, when Lou did walk at 18 months, I missed her very first steps, and this was heart- breaking.
From 18 months old, I noticed small things with Lou, such as she was always in the bathroom seeking out water, when she started the nursery where I worked, she could be constantly found in the bathrooms and flooded them frequently! She was a wanderer and didn’t take well to mummy being in the classroom! She was very strong-willed and I put her behaviours and tantrums in public down to being ‘The Terrible Two’s’ (as people around me would call it.)
The advice I was given by professionals was: that this was a ‘stage’ and the time to worry is if it carried on.........

Part 2 – I believe You!

I believe you...
Those are the three words that any parent who is struggling wants to hear.
Before my second child (I refer to her affectionately as Moo,) was born in March 2015, I had expressed my concerns about Lou’s behaviour, in terms of her listening skills. We were still seeing up to 10 large tantrums a day and this seemed to escalate once my pregnancy became more noticeable. I held off for a long as I could in telling Lou that she would be having a baby brother or sister, as I knew she’d find this difficult to comprehend. One thing that I found frustrating is that Lou was always worse around me. She was well behaved at Pre School and when away from me, such as when she stayed over at my parents’ house. This made me feel quite bad when I also had pregnancy hormones flying around the place, I started to believe that my own child disliked me.
I did some reading up on ‘Sibling Jealousy,’ before Moo was born in order to prepare myself, people around me would try and reassure me by sayin:

“she’ll get better, once she gets used to the idea of being a big sister.”

I only wished this was true.

Once I brought Moo home Lou had a quick look at her but didn’t really make much fuss over the addition to the house, we noticed an expected increase in Lou’s meltdowns at this time, due to the change in the family dynamics, it must have been hard after being the only child in the family, and being the center of everyone’s world until Moo’s arrival. I found it very hard when the girls’ father went back to work after his paternity leave, as I’d had a Caesarean I wasn’t able to get around for the first two weeks, we were living in a second floor flat with a staircase as a barrier to the outdoors with one 3-year-old and a newborn.
Sometimes when going out, as I got to the bottom of the stairs, and I was still in pain from my major surgery, I’d burst out crying. As I tried to load the pushchair up and desperately hold onto the reins, Lou would often cease the opportunity to run off and I’d have to abandon my newborn whilst retrieving her.
Once Moo was 4 months old I expressed concerns to our health visitor about Lou’s spiraling behaviour as I thought she would have calmed a little by this time, she would pull her sister’s tiny legs whilst I was holding her, and would vigorously rock the bouncer chair when her sister was inside, she was putting so much pressure onto her baby sister, even though a lot of the time she was trying to affectionately hug her. I was alarmed when the health visitor suggested that I should know more about behaviour management as I’d – And I quote
 “been in childcare longer.”
This came as a shock to me as I believed health care professionals should support the children and their families from birth to 5 years old. She suggested that the problems with Lou might lie with my “behaviour management” and “parenting skills.” This, for me, was a massive knock in my confidence as at this point, I’d had 10 years’ experience in working with Early Years children, I know it’s completely different when it’s your own child, as opposed to the children in my classes, as I was aware that Lou, naturally had more of an emotional attachment to me and even at 3 years old, was aware that I, as mummy, would be there for her regardless. The Health Visitor referred me onto my local Children’s Centre for a service called ‘Family Support’ but I still hadn’t heard from this referral by August 2015, and by this time I’d reached a place where I was emotionally and physically drained, and finally got myself down to my GP who prescribed me with anti-depressants as I was so low and I believed myself to be an awful parent. I blamed myself for everything. Promises were made by the health visitor for referral to a Paediatrician and to CAMHS (Child and Adolescent Mental Health Service.)
I once saw this lady outside my health centre and she asked Lou directly “have you been naughty?” I literally couldn’t believe that this professional was labeling my child with the ‘N’ word, a word that I have never used in my profession. She later denied this when I wrote a complaint to my local health visiting service.
Whilst all this was going on I had applied for a house with a garden for Lou to be able to burn of some of the pent up energy. I longed to be back closer to where my parents lived and I was over the moon to be given the go-ahead for the house with a garden, only 5 minutes from where I grew up, this would be a positive new start for us all as a family and I was very glad to be re-united with our original health visitor from when Lou was born.
It was during a visit to my home that this wonderful lady saw Lou climbing all over my furniture, jumping off and being rough with her younger sister. It was the first time I felt properly listened to and there was no mention of my parenting skills whatsoever, what the health visitor noticed is that I looked very different to the last time I saw her, she said to me “you look exhausted,” and I agreed that I was completely run down as Lou was extremely hard work at home and I was thoroughly drained as I wasn’t being believed in how bad things can actually get at home, in terms of the extreme meltdowns, sometimes up to 10 time per day.
This is when the health visitor said
“I believe you,”
I could have hugged her!
This lady knew my family, she believed me when I said that the only time that Lou was still was when she was asleep and that she had to be constantly supervised, especially when in the same room as her baby sister. Loose ends were quickly tied up in terms of the referral to the Paediatrician, which due to the previous health visitor, had never actually been made. Lou was also referred to an Occupational Therapist and we were put in touch with a Family Support worker, via our local Children’s Centre.
At the same time, I had a very interesting conversation with Lou’s new Pre School manager who asked if I’d ever heard of SPD (Sensory Processing Disorder,) as she’d liaised with the area SENCo (Special Education Needs Co-ordinator,) who had suggested that we may like to investigate further after observing Lou in the Pre School setting. The manager and other staff at the Pre School had noticed that Lou would hold her hands over her ears if she experienced a sudden loud noise, and this was happening during music time. Staff also noticed that Lou would need at least 10 seconds ‘Processing’ time if asked a question and she could talk fluently but they did question her understanding. Lou was responding well to a visual signing strategy called ‘Sign-a-long’ and visual timetables, which clearly detailed what events and routines were happening each day.
We were still having a pretty rough time at home, in terms of behaviour but I soon came to realise that this was because Lou was a very good ‘masker’ of her difficulties and doing her best to conform in the Pre School setting, she would then ‘explode’ as soon as she got home. She would hold in all of her sensory overloads at the setting, until she saw me, who she saw as her ‘safe person,’ and in her ‘safe place’ of her own home. I became interested in finding out about SPD, to help my child, to understand her more. I found a lot of useful information online and I soon became aware of several support groups via social media, where I could talk to other parents who were going through the exact same thing. Many of these groups were based in the USA and I soon realised that there was more awareness there, they seemed to have so much more awareness than in the UK.
When Lou saw her Paediatrician for the first time in April 2016, she was extremely lively and tried to escape from the office several times, she was extremely hyperactive and didn’t want me to talk about her to the Paediatrician and therefore would try and gain my attention by clambering onto the examination table. She snatched away toys from the Paediatrician that she had got out of cupboards and was wanting to wash her hands in the sink! She even looked inside the Paediatrician’s handbag and wanted to type on her computer! What this appointment gained was a diagnosis of Sensory Processing Disorder, but the Paediatrician also noted that Lou had shown traits of ADHD (Attention Deficit Hyperactivity Disorder,) and ASD (Autistic Spectrum Disorder,) although she wouldn’t diagnose anything further until Lou was age 6, to do further observations and she was keen to see how she was going to settle when starting school. One thing that was completely enlightening for me was that the Paediatrician noticed that Lou had hyper mobile joints.
In March 2016, I was empowered to start my Blog ‘Sensory Sensitive Mummy,’ to share our story and to help spread awareness of SPD in the UK, and hoping to help and support other parents in the process, because there may be many out there that are feeling as desperate as I once was, their parenting being blamed for their child’s difficulties, especially if these children are also very good maskers of their difficulties in educational settings.
This lead to the phrase that I’m always saying...
... “awareness is key, awareness is understanding.”

To Follow the journey of Nicki and her children then follow these links.
Sensory Sensitive Mummy
Blog email: sensorysensitivemummy@outlook.com
Twitter: @sensorysenmummy
Instagram: @sensorysensitivemummy

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