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Giggles with Ellie

Melbel Member Posts: 1 Listener

Hi, I’m Melanie, mum of 3 and mum behind the Instagram page giggles_with_ellie. I started the page to celebrate our daughter Ellie’s journey with Angelman Syndrome and Epilepsy. I left primary school teaching to pursue a career in special educational needs and disabilities which I was then thrown into when Ellie came into our lives. We have since relocated to my husband’s homeland in Donegal in Ireland to be closer to family and build an accessible home.

 Ellie smiling

Ellie’s birth was beautiful and felt like a huge achievement. She was born at home which I hadn’t been able to do with my first born as he was just too late. Ellie seemed perfect at birth, she latched on to feed within minutes, she was a good weight, she slept contently and never cried. I was totally smitten with my little baby girl. My husband and I sailed through the next few months adjusting to be a family of 4. We were blessed with a super chilled out baby who would sleep anywhere, loved her play mat, tickles, bath time and swimming.

At 3 months she had a bad cold and it was like we had a newborn again. During a regular weigh in at the well baby clinic I expressed my concerns. I was given a book called 'Birth to Five'. Being a teacher by profession I naturally started assessing her. She was 3 months and couldn’t lift her head while lying on her tummy, didn’t look at faces, wasn’t startled by sudden loud noises and couldn’t make cooing noises. I spoke to other mum friends at play group and during play dates who I’m sure thought I was paranoid at the time. At 6 months she couldn’t reach out for objects, roll over, pass an object from hand to hand. She couldn’t even sit independently or turn to my voice from across the room. Going to play group and speaking to other mum friends started getting difficult. Seeing other children her age (and younger) doing things she couldn’t yet do was a reminder that something wasn’t right.

Gradually as the months went on my focus was only on what Ellie couldn’t do or wasn’t doing yet. My health visitor (HV) started visiting me monthly to discuss the progress or lack of it. I had support from a lovely family outreach worker who always pointed out positives but all I could see were negatives. I wanted and needed to fix her and make her better. As my concerns grew, my friendship circle shrunk to a loyal few. I cried a lot. I cried on my own. I cried to my husband. I cried to my mum on the phone. I cried to my son’s teacher, the receptionist at the doctor’s, my neighbour, strangers in the supermarket, my hairdresser. I cried in front of my son who always gave me the biggest most reassuring hugs (he was barely 3). I cried whenever anyone greeted me with 'how are you?'. I was comforted by them all, with hugs, shared tears, uplifting words, cups of tea and lots of cake. But still no one could help me understand why Ellie couldn’t do their things.

Referrals were finally made to multiple services including Paediatric Neurodisability. While waiting for appointments to come through I attended a Portage training course. This course was open to parents and practitioners of children with special needs and disabilities. On day 1 the trainer said something that would completely transform the way I looked at Ellie’s development. She explained that rather than focus on what a child should be doing for their chronological age we should be looking at what they can already do and work from there. That night I went home and looked at the developmental assessments I had done on her before. I realised that I hadn’t put any value on the things Ellie was able to do. I ignored the age related to the milestone. I ticked what she could do and highlighted what came next.  Using what I had learnt, I broke the skills into small steps and began to see progress. For the first time I celebrated Ellie’s mini milestones. I began to see progress and I really enjoyed celebrating her achievements each step of the way.

Fast forward to March 2016; at 18 months Ellie was diagnosed with Angelman Syndrome. She completely fit the description. A lot of things started making sense. 6 months later Ellie was also diagnosed with epilepsy. I continue to see everything Ellie does and achieved in a positive light. She has worked hard to get to where she is. At times her epilepsy can take her back a few steps, but she has great perseverance. Ellie sat independently and learned to crawl. Weeks before her 4th birthday she walked down the aisle at her auntie’s wedding with help from her daddy and uncle.

Ellie's next major milestone will be this September, when she is due to start school. I just can’t wait to see her in her uniform.

You can follow Melanie and Ellie’s Journey on their Instagram page. What's your child’s next milestone and how will you help them achieve it? Please share in the comments below.





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