Friday, November 20, 2015

Somewhere on the Spectrum. Written by Julie Clarke

Somewhere on the Spectrum

There was only a few more times I could hear the words “She’s just a late talker”. At just over two years of age Eliza had no clear spoken words and her behaviour could be unpredictable. Friends were full of support and advice constantly telling me reasons like “well, she’s an only child and she has no sibling to learn from” or “she will speak when she is ready”. What each of them forgot or perhaps didn’t even know was that we had had some speech and around 13 months of age it disappeared. We had the baby babble including the mama, dada and it was gone. Barely a sound crossed those lips unless she was crying for something. (I will mention this was pre MMR vaccination as I am sure people reading this will be thinking along the ‘vaccine injured’ route). We saw a paediatrician when she was two and a half and even he announced “it’s just a speech delay” so I argued and told him he was wrong, that this was more ‘speech come and gone’, this was some kind of regression. He agreed to send us to speech therapy and after a few months the therapist sat me down and asked if I knew what Autism was. Hands up, I didn’t!! I knew the word, knew it was something to do with special needs but that was it. I held it together until she left, heard her say she would report back to consultant, arrange assessments……. My head was spinning. The minute she was out that door I went and looked up Autism on the Internet. The more I read, the more I was sat thinking they could have written this based on Eliza. My husband buried his head in the sand for months, refused to believe there could be a lifelong condition behind the lack of speech, the lack of eye contact and the major meltdowns we were getting at times. He even accused me of being led by the specialists, that they were brain washing me in to believing she had autism. It was his way of both breaking down and dealing with it as best he could. Me? I had no choice but to carry on, attend all the appointments and try and understand what was happening. I knew by now that in my head and heart we were going to get that title, that label, that diagnosis that would change so much for us.

Diagnosis day led to a mixture of sadness and relief. I was sad because I feared the future for us and her. Panic set in about what school to send her to, who would understand her needs, how would we communicate with each other, how at 3 years old she could have a lifelong disability…… so many questions in my head at one time.


The relief was knowing there was a reason behind her lack of speech etc. and that there was early intervention available that could change her life and help her social and communication skills. Thankfully at this point my husband had caught up as such and was realising that he could not deny his feelings any longer and that he needed to catch up for the sake of us as a family unit and for her, that not only did we need to be in the same book, we needed to always be on the same page. I gave up my career as a nurse as finding any child care with a special needs child is either non-existent or came with a premium price tag!  I learnt Makaton signing and how to use PECS (Picture Exchange Communication System) so we could open the doors for more communication for Eliza. We were incredibly lucky that the area we live in had such a great early intervention team and that the nursery we chose were extremely helpful and supportive. With the local special school full for nursery age, Eliza attended mainstream for a year and was given a 1-1 Teaching Assistant pretty much the entire time she was in school. She had some great days and she had some bloody awful days but never once did the staff give up on her and they never stopped being calm, kind and so very
patient. Some speech started coming back during this year although very random indeed. One week it would be words like mummy and car, the next week would be something like zombie or catfish! I personally didn’t care what she said, it was all speech and all words. A couple of years later she would say her first swear!!!!!! Not proud of the word that she copied from someone else but strangely proud that she used it in the right context and said it perfectly.

After a year at Mainstream a space was available at special school and we took it after discussing the pro’s and cons for weeks of which school was best. I have never regretted that decision ever. She started that school with under 20 spoken words. She is 6 now and this is her third year there. She talks in sentences, can read almost mainstream level, is a whizz at computers and has developed in to a fairly independent, strong willed, cheeky little Diva who knows what she wants and will try anything to get it. She changes every single day. We have had some major barriers to overcome, speech disappearing being one of the biggest. These days it’s the other ‘A’ word entering our lives….. Anxiety! Eliza struggles on a daily basis with anxiety, it can lead to the mother of all meltdowns on a really bad day (By bad I mean she is past comforting and calming, anxiety has taken over and we must ride it out till she can rein it back again). It’s another thing we will work on and help her to overcome or at least learn to live and cope with. No doubt there will be many more things to overcome on our journey, whatever life throws her way we will help her as best we can. We have family and a bunch of great friend that live close to us. They understand as best they can and they are always there no matter what and share the good and bad days with us.

It’s not easy raising any child, let alone raising an autistic child. Autism can make life so complicated and frustrating for her and everyone around her. It’s a complicated life to lead and the reality of it is that there will be days you feel so overwhelmed and you think you can’t cope anymore but you do, you dig even deeper and find something to keep you going. There will be nights that you go to bed and cry yourself to sleep or just lay there because you can’t switch off from the billions of thoughts racing through your head. Feelings of jealousy may grip your very soul and rip it apart as you envy the milestones hit by other children or as their parents tell you how wonderful their kid is doing at school. You will encounter your share of ignorance from others that don’t understand and form their own opinions as to what’s wrong with your child – bad parenting, just needs discipline and nothing wrong, just naughty attitudes. You will sadly get the stares from others that wonder why such a beautiful child is having the most epic meltdown in the food aisle because their favorite drink is not available. You will grieve for what you might have had and even though you may feel guilty for this, it’s normal to feel that way. You may lose a few friends along the way for various reasons but you will find a bunch of friends that will understand and support you, and they will remain by your side no matter what. You will cherish moments that may seem small to others but you know are huge moments for your child. Above all, you will survive whatever is thrown at you. You will be ok and you will learn that there are many of us out there that have been through parts of what you are experiencing and some of us even blog about it in the hope of making you feel that you are not alone. I choose to share our journey with the hope that others will find a useful tip that helps their child or you will read something and think
“ahhh it’s not just us” or “wow, that kid does that thing too”. Please NEVER feel you are alone, there is always someone out there willing to listen and truly understands.

Feel free to join us on our journey at Blooming Autism


   
 **If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to follow us daily on the GJOP page.

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