14 April 2017

Autism Awareness - #YourJourneyMyBlog - Keeping Your Head Above The Water

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. 

This heart felt account was written by an anonymous mum, struggling with her thoughts and feelings and battling the urge to want to join in and be normal whilst knowing that it will never work out the way she imagines in her head, wrote this heartfelt account. That all too familiar feeling of being ignored by professionals and the gap between her and her friends widening as her son struggles with social situations and becoming reliant on the safety of home

My son was diagnosed with autism at the age of 5, just over two years ago. We now know that he is atypical with demand avoidant behaviour,  social interaction, social communication and proprioception difficulties. We also know that he is "bright", imaginative and enjoys making people laugh. 

Our journey into the world of autism has felt a bit like diving headfirst into an ice-cold pool. You know the feeling - at first you catch your breath and are immobilised by how cold it is ... then you begin to move around and you start to think it is not so bad ... eventually you reach the point where you get used to the temperature and it feels quite pleasant ... and then you reach the point where you are in no rush to get out as the air outside seems so much colder now.

Diving in

We had little idea that my son had autism until the wheels fell off after he started Reception. At school his behaviour was difficult to manage, and before the half-term we had been called in many times to discuss behavioural incidents. Confused by the occurrence of behaviours we didn't see at home, I researched online in the hope of understanding why school were having so many issues. 

Armed with a little knowledge gleaned from the internet, I decided it was time to call in outside help. We started with our GP, and a referral to a paediatrician. However the five month wait for an appointment was longer than we felt we had with school, and we decided to go down the private assessment route. 

Five professionals (Clinical Psychiatrist, Child Psychologist, Educational Psychologist, Occupational Therapist and Speech & Language Therapist) and a few months later, we had a confirmed diagnosis of autism and 60+ pages  reporting on our son's strengths and difficulties. This was then followed up by the NHS route (more professionals, more reports) as we followed the standard pathway. Thinking back now it seems a little OTT, however we were desperate and were prepared to try every possible avenue in our search for answers. 

Those months are a blur, and I have forgotten many of the details of what happened or what we were told. I do however remember three things.  First, was the child psychiatrist telling us that what currently a weakness could one day become a strength. Second, was the child psychologist telling us that our son was exceptional with very strong visual spatial  awareness and fluid reasoning skills (he was in the 99th percentile for both). Third, was the immense feeling of desperation and frustration at my inability to bring about change for my son. I could see my child struggling and there was nothing I could do to change things for him. 

Life didn't get much easier once we had a diagnosis, however it did help us know what questions to ask and what support to push for. Six months later we had an EHCP and a new school, and we were hopeful with the promise of the right support in an ARP (additionally resourced provisioning unit) which was attached to a mainstream school.

Sadly just two months later, we were facing another placement breakdown as our son didn't respond well to the support provided in the ARP and his behaviour was becoming even more extreme. The school triggered an emergency review of his EHCP, and put in an application for him to be transferred to a special school. 

With no say in the matter we resisted. There was no parental choice, and at the time it felt like we were being forced out. The special school, a BESD (Behavioural, Emotional & Social Difficulties) school, seemed more like an institution than a school. I was incredibly concerned about what this would mean for my son, his sense of self-worth and his academic future. 

Starting to move about

Things started to change for us when he started at his current school last April. Despite my initial concerns about the school, it turned out to be the best thing for us. Overnight the behavioural issues at school disappeared, and slowly we could see our son start to engage more in the school curriculum. Not worrying about school, or another placement breakdown has allowed us to breathe a lot more easily and we worry so much less. 

At home, we have started to understand more about his triggers, such as social situations with lots of people around him, and how to reduce the number of situations that would cause him to be come over-stimulated or anxious. Instead of eating out in restaurants, we now order in. Instead of heading out to busy play centres at  weekends, we stay at home where he can keep himself entertained with the things that he enjoys. When we do go out or visit other people, we plan ahead and think about how we can help him calm down if we see him heading toward a meltdown. We are also prepared to leave early if we see that things are getting too much for him. All of this helps to make life so much less stressful, for us all. 

The other big change is that we now understand his need to move, and gain proprioceptive input. Gone are the days of me shouting "off the sofa" as he repeatedly jumps on and off the sofa (for hours). Now we have an indoor trampoline that he can jump on as much as he likes. When we see him starting to literally bounce off the walls and furniture, we bring the trampoline into the lounge and he is able to get the input he needs without destroying my furniture. 

As parents we have found a community of support, both online and in local parent support groups. We no longer feel like we are battling alone, and we have a community of people that we can go to with questions when we are faced with a new challenge that we don't understand. This has been a life-line to us, and has really helped us cope with the difficult times. 

Getting used to the temperature

Finding a supportive school and knowing how better to support my son's needs at home means that we are able to enjoy more of the positives. From his "training to become a ninja" so he can one day be a power ranger, to the out the blue questions such as "where does the word coffee come from" which keeps us on our toes. 

He is currently behind expected age levels across all areas of the school curriculum, however he is quickly making progress and we are hopeful that he will catch up in the next few years. In the past 6 months he has started to overcome his resistance to writing, and through Asterix he has also learned to enjoy reading. We now often find him sitting with a book reading aloud to himself - something I didn't think would happen this time last year, as he was so resistant to learning anything new. 

We really are starting to get used to the temperature and starting to enjoy the swim. Occasionally we hit an extra cold spot and have a little shiver, however we feel better able to handle these moments as we are not as overwhelmed as we once were. 

My hope is that in the next few years we will be able to progress from paddling around to keep our heads above water, to swimming laps as we master new challenges. 

You can follow me on my blog - Life With ASD and The Rest

You can also follow my journey on Facebook - Life With ASD and The Rest 

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