Thursday 2 April 2015

Autism and our Emmi-Belle

As some of you know I have a little girl by the name of Emmi-Belle that lives with Autism.
Emmi-Belle is just 3 years old and already has been through more than a lot of children her age.

Everyday things can be very challenging for Em. She struggles with communication and is very sensitive to sound, light  and touch. When it all gets too much for her these sensory issues get worse and more often than not, ends in a full blown melt down.
Don’t get me wrong Em has come a long way in the last 4 months. She is attending a school for children with ASD ( Autism Spectrum Disorder) called AEIOU. She is learning and improving with her communication everyday. Emmi also has a condition they call Echolalia which is common in children with autism.

Echolalia is repeating or “echoing” what another person has said. Children who are echolalic imitate what they have heard someone say in everyday life, lines they’ve listened to from a book, lyrics to a song, or a script from a show or movie. Professionals most often characterize children as “echolalic” when many of the words or phrases a child uses seem to be repetitions from a previous activity rather than new utterances a child comes up with on their own.
Children with echolalia use what many parents describe as “more advanced language” than they can typically generate. For example, a toddler who is exhibiting echolalia can quote long segments from a favorite TV show or sing an entire song word for word, but he can’t ask for milk when he needs it or answer a question his dad asks him. Even though this child “talks,” since he can technically say lots of words, he doesn’t seem to completely understand what he’s saying. In essence, he’s just repeating words without really being able to “use” them.
Researchers have found that up to 85% of people with autism who are verbal exhibit echolalia in some form. The silver lining in this is that echolalia is actually a positive sign that children with autism may eventually be able to learn to use language to communicate.

I find it hard to explain what Autism is when people ask. I mean for each kid diagnosed, there is a massive range of different traits.
A lot of the time their issues are based around communication, sensory and social.
Some kids don't like to play with other kids and others love to be around lots of kids but don't understand boundaries.
Some ASD kids can not stand the feeling of certain textures like paint, sand, custard, jelly and then other kids can't get enough of it.
Some children with ASD will be non-verbal for the rest of their lives and then other ASD kids well if you get them onto a topic they enjoy you wont be able to get a word in edge ways. 
Some children with ASD will become geniuses and some may struggle intellectually.
Our kids thrive off structure which is something our house hold lacks to be honest so it has been a huge learning curve for us. Emmi-Belle communicates with picture cards called pecs. She has a velcro book with velcro pictures and when she wants something she will rip off one of her pictures from her pecs book and hand it to one of us. We have a run sheet for the day set up on our kitchen wall in pictures to lay out EB’s routine for the day.

Autism has tipped our family life and world upside down, we have had struggles and we have had triumphs. Each day we learn together, grow together and laugh together. Sometimes i do get upset thinking how unfair it is for her to have to deal with the constant struggles that are in front of her. It's unfair that she didn't get the same opportunities as some other kids. It's sad that she tries so hard and still struggles with trying to express herself and it's upsetting that she might have a totally different life to the average Joe Blow, but then I think about this... What draws people to Emmi? The fact that she is so innocent and fragile? (Autism) the funny things she repeats over and over and over in her cute little mimicking voice? (Autism) the fact that she is in her own world and nothing matters but Emmi-Belle land? (Autism) when she randomly laughs at nothing or squirms like ghosts are tickling her in a fit of laughter (Autism). The way she blows people's mind with how much knowledge of number,colours and shapes she has (Autism)... You picking up what I'm putting down yo? Yes she is going to have a rocky road ahead but she will also have a special ride along the way and you know what? Normally it's the people around an autistic person that find it sad and the actual person living with it wouldn't change that they have autism because it helps make them who they are and, they love who they are.

I hope I have been able to give you a little insight into our world with Autism and hopefully this gives you a better awareness of other people living with ASD.
Thanks for reading.
Love Nikki xx


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