Autism”Baby Baéley”:A family’s journey…….

I’ve been thinking all week about how I would introduce Laura and the story she has kindly allowed me to share about her son Baéleys journey for an ASD diagnosis (Autism Spectrum Disorder)

I’ve not known Laura long but had heard so much about her from our mutal friend. After spending a few days away with her last month I can honestly say she is one of the kindest people I have ever met. 

I can see how she has taken being a mum to Baéley and everything life has had to throw at her and her family, totally in her stride.

This guest post is about as real as real life gets, so go stick the kettle on and crack open the Jaffa Cakes, I promise it’s a good one!

 

Our journey began back in 2009 in Benalmedena, an ordinary family of 3 on our holiday’s.

When we returned we shortly found out we were expecting our second child. We were over the moon to find out we were pregnant. Tia (Our firstborn) was five and we had literally just got engaged (I asked him!) and life could not be any more perfect for our little family unit.

When we had our 20-week scan and it revealed we were expecting a boy, we were absolutely thrilled! We envisioned a little footballer, riding motocross bikes, getting dirty, and visits to the barber. These were just some of the things my other half Alex had in mind with this little angel.

A little later (at Term +5), early in the morning, my waters broke. The labour was very quick second time around; so quick in fact I nearly had him in the hospital lift.

We were finally united with our beautiful “Baby Boy Button” (my maiden name). Smitten isn’t even close to how we all felt – the perfect addition to our now complete family of four. So calm and bright-eyed, “Baby Baéley” loved cuddles and to chill in his swing just watching everyone with curiosity.

Baéley developed as “normal” as he should have. He loved the weaning stage and would literally hoover up any food given to him, flavours, textures, consistency, my boy definitely liked his food.

Baby Baéley cooed, laughed and loved to be tickled and naked. He was walking at just 10 Months and life literally became a race. Just before his first birthday, baby Baéley showed little interest in toys. He was obsessed with Nemo and Disney films.

In the beginning, he didn’t play with toys in the traditional way. He would do something like spin wheels and be attracted to just red things.

I believe if you’ve met a child or person with autism, then you’ve only met a child or person with autism.

One point down the line he couldn’t talk but could quote every word to that film: It was then I knew our boy was special.

Over the next year, Baby Baéley changed, his temper was unpredictable, although still loving and happy, something had changed in his eyes. I had suspected for the longest time that baby Baéley was different and the signs all pointed to autism.

Looking back there would be triggers to his meltdowns but this only became more apparent to me later into our journey with education and awareness.

Our family practitioner (who I wasn’t fond of due to a mistake she made in Baéley’s red book at a weigh in one time) became a regular point of contact for our family. Between the age of two and three Baby Baéley (not so much a baby by now), a toddler who doesn’t interact or talk much and had been seen by speech therapists and all kinds of people was due to start school!

“He’ll be better of in a private nursery,” they said, “fewer children, more support, it’ll be so much better for him”.

We visited a local nursery, and everything looked really promising. Four weeks after his start date we received a call from the nursery, calling me in for a quick word. Within those three minutes, my world was turned upside down. “We cant have Baéley here anymore The other children are scared of him, they keep telling us: don’t let him hurt me”. My boy, I watch playing in the corner, hurting other children, instantly I felt so sorry for them!

The disappointment and hurt at this thought is a pain I’ve never felt. My little gorgeous boy rejected from an environment who made the commitment to help him. I can remember so clearly the walk home that day, feeling utterly useless, lost and so, so alone. Smiling down at my little boy in the buggy looking at me with a grin that could melt my heart. We got home and I vowed that day to never allow that to happen again. My boy needed help and I was going to get it for him!

I prayed to god for some kind of miracle; an answer to what would happen next. I touched base with our family practitioner. Her heartfelt apology seemed genuine and probably the only time I felt she actually cared. By now though it was too little too late. Her words will stay with me forever “Vicki from the CDC is going to call you”.

I didn’t know it back then but this lady would become my saviour. An assessment at the CDC, you’ll see a paediatrician and a whole bunch of other people who actually WANT TO HELP YOUR FAMILY!

Within a month Baé was well on his way to fitting in somewhere. He was on a list to go for ASD assessing and not coping at all alone in weekly sessions at the CDC. I’d have to stay in the room with him, “he loves his mummy so much staff would tell me over and over”. I did manage to find a really friendly group just down the corridor but no sooner had I sat down with a cup of tea Bae was at the door anxious and upset so back we went.

After months of attending the CDC we finally have an ASD diagnosis. Baé was starting to leave my side and nobody would have expected me to be able to leave the nursery but I did. After a few mornings, Bae finally accepted that I wouldn’t be there.

I was so sad to have to say goodbye to those lovely ladies but I knew in myself that after being there for a year and a half it was time to go it alone. I was so sure that we would be fine.

We were married in 2014 in Turkey which was an amazing experience. Our next plane journey should be easier, everything now with Baé is all just trial and error. It was a magical wedding holiday and wedding. Bae was “the prince”, he often watches the video back and refers to himself as that.

Fast forward to today and Baé is still a loving, happy boy who is still obsessed with Disney. He’s always curious and cheeky with that special ability to make us smile and frown in the space of a second. He’s doing very well at school and the perfect family of mine at the beginning of the journey doesn’t even resemble my perfect family now.

To quote an amazing lady, who also played a huge part in my recovery “Louise”:

 

Our journey is forever ongoing. When I think of the people, professionals, children and education I’ve met since Baé’s diagnosis, I feel completely honoured to have been given a child who has made all of these things possible for me.

 

 

Where are Laura and her family now?

The day Baè was kicked out of the nursery I vowed to always fight for him and my family. The process after was so isolating and lonely that when the opportunity came up to support other families and children it was a no-brainer for me to go and give everything back to help even if it’s just 1 person, to not feel lonely on their journey.

I give up my spare time to support families with children with disabilities through an amazing charity called Scope. Offering a friendly service with support just through listening. Having both my children made me want to be a better parent and person and through Baèley’s journey, he’s made this possible and so much more.

Baéley now attends a special school where his individual needs are met and he is thriving.

 

Please visit The National Autistic society for advice and support.

 

 

 

 

 

 

 

Words: Laura Hutchinson Photo Credits: Laura Hutchinson Edited: Kris Gibbons
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