What it means to be Non Verbal Autistic - from a mum's perspective.

in #autism8 years ago

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When you first learn you are expecting a child, you don't tend to think about the possibilities of something going wrong. Your excited and nervous at the possibilities, however you never expect your child would be the one you hear about in stories on the news.

Well at least this is true for me, when I was first handed my tiny little girl she was perfect in everyway. She was an amazing sleeper and eater, she loved to play and be read to she was so happy all of the time. My partner @ausbitbank and I couldn't believe how lucky we were, to have such a beautiful sweet natured child.

This all changed after a prolonged illness when she was a year old, she suddenly stopped talking. After years of seeing doctors and specialists we finally had a diagnosis, our little girl was severely autistic.

A year after our daughter was diagnosed, our son also received an autism diagnosis he is also non verbal. This means a lot of different things for our family, but one of the most significant things is that five years on and both of our child remain mostly non verbal.

What do I mean when I say non verbal? Well both of our children are capable of talking and can say a few words each, after over four years of intensive daily therapy we have made some progress. However this is rare and requires a lot of prompting, but when they succeed we praise them enthusiastically to encourage more talking - but this only works some of the time.

How does this affect your lives? When people have asked how we manage with two nonverbal children, I ask them to try and convey to me something they want or need, without using any words and see what they would do to try and get what they were after - most people go straight for pointing - you may not realise but pointing in itself is a skill that requires work it took us three years to get my daughter to point at what she was interested in and we still struggle with this on a daily basis.

Basically @ausbitbank and I interpret what our children want, it has taken years and some days we still fail at basic communication. We have implemented many different systems into our lives to try and aid our children in communicating their wants and needs.

We have worked with speech and occupational therapists, doctors and special education teachers and so far we use four main forms of communication.

Firstly we always try for verbal communication, and we prompt our children by modeling (Saying) the word or phrase and then allowing a processing time of about 60 seconds. This allows our children the time it takes them, to hear the words and process the meaning while filtering out all other distractions (everything is a distraction).

Secondly is physical communication, for our kids when they want to something they will reach for it or point to it and when it is offered take it and if they don't want something they will push it away. (In my daughter's case she always uses the back of her hand to push away unwanted items)

The third method we use is sign language, we only use a few words though the sign for "finished" is very useful and after years both of our children understand what it means. It is a really amazing facilitator for my children, when they have a meltdown they can't focus enough to process words being said to them so we use the sign with the word to reinforce the message.

The fourth and up until now the most used in our family is PECS, picture exchange communication symbols has been the most reliable form of communication for my children. It has taken them both years to learn the method, it works by using very simple pictures to convey a word or meaning - for example there is a picture for "I want" and then a picture of "a glass of juice", both pictures go onto a sentence strip and the child points to the pictures in order and then the parent/teacher models the word for them into a sentence and again lots of praise is given.

The fifth form of communication we use now is augmented alternative communication device - basically PECS on the ipad. We are still working on teaching the kids this new system as we could only afford them at the end of last year but so far they are working really well. It is easy to add a new word or symbol as we go through life rather than having to print, cut and laminate every word they may want to use.

Being non verbal in our society can cripple a person's ability to function as part of society, usually it happens to people who are already marginalised in our community - the disabled. I'd like to also point out non verbal doesn't mean that they don't necessarily understand or can hear words - both of my children have brilliant receptive language skills - so don't ignore them or say anything offensive in front of them chances are they know exactly what you said and meant!

I ask everyone that took the time to read this far to have a go at communicating with someone preferably a random stranger without using any words, see how well you manage and let us know how it went - try and spread some understanding for those who don't have the words themselves.


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Glad You're Aware!

Though I'm a verbal autistic, I grew up with parents who where not aware of it. Your daughter will have a much better life with your awareness.

Anxiety is the Main Driving Force

Autism creates massive anxiety. Adding inability to communicate drastically compounds the anxiety, reducing intellect until emotions level out again.

You're going to find one of the best things you can do for your daughter is find the right kind of cannabis for her. This may take time, depending on the legislation in your area. You'll be amazed at the increase in life quality for her, simply through the reduction of anxiety.

Wishing all of you the best!

Keep it Clean!


TheCleanGame Blog, Neatly Categorized

Thanks @thecleangame that is so nice of you to say, I mean I try but always nice to hear it from someone who understands. Anxiety is a constant issue in our house, that is why we tend to not go out much as a family to try and reduce the stress on the kids.

My kids are my world and I would do anything for them, it is hard but parenting is never easy. Unfortunately in Australia we are only just now looking into starting medical marijuana trials but only in severe cases mostly in children with epilepsy. I truly hope they legalise it here as I have seen evidence of what it can do for people with parkinson's I wonder how it affects autistic peoples stimming?

Sanity is coming

Many nations have agreements with the USA to not allow cannabis use. The USA is about to drop that in their own country, I highly doubt they'll be enforcing it on others.

You have to be here to understand what it's like in Colorado USA. Times are changing fast.

I think things are changing in terms of acceptance of cannabis and medical benefits. It is not a cure-all, but it does seem to help many people for a variety of things. I don't know if there have been any medical trials related to stimming and marijuana use, but this story was really interesting that talks about cannabis and epilepsy.

http://m.huffpost.com/us/entry/3734283#slide=887981

I hope you know how awesome you are in the parenting role. I can imagine you are a pretty awesome individual all around.

Thanks for the support and kind words :D

As an OT, I admire your patience and your dedication!

thanks for writing this. all my post in steemit is about my daughter also, 3 years old no communication but can say words. shapes, colors etc. but not communicating. its heartbreaking when she cant even call me mama,, im still waiting for the day to come.

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