“DO you think she has autism?” The words no mother wants to hear, especially from her husband and 16 year old daughter. It just cemented the fact that my own concerns were valid.
It felt like a baseball bat to an already broken heart at first. I’ve been trying to process it as, ironically, the ‘Our Autism Journey’ series was published in WOW! every week.
I’ve deliberated writing anything at all or replayed in my mind the right way how to. I’ve come to the conclusion that writing has been my lifeline and I’m not sure where I’d be, mental health wise, without it.
Here, I seem to be able to transfer my thoughts from my head, I don’t have to change who I am, what I stand for, or make apologies for it.
It may be my colourful language. It might be my raw honesty. It could be the tales of family life. It may even be our autism journey.
The support from people is something else. It gets me through my day, sometimes my hour, and it helps me feel better about myself.
I believe that each struggle I endure helps someone relate and there is this mutual healing going on. I gain it from writing and releasing and someone gains it from reading and thinking “Thank God it’s not just me”. Knowing this helps me keep my head high.
People talk about maybe why I share what I do. Why does she put herself out there? Why does she share about autism? What if her child doesn’t want people to know?
I do what I feel is right for my family and I would go to war for each and every one of them.
My children will be proud of me knowing this is who I am and helping each other is what we do and who we are. I’m sharing because someone out there reading this needs to know they’re not alone, that sometimes things are absolute s**t and we’re knocked to our knees.
I do not want your sympathy, there is nothing to be sorry for. I do not want you to be sad, I’ve shed the tears already. I do want you to know that we will get through this with humour, sarcasm and wit like we have so far.
A Typical Irishism: “Can I do anything?” Well, you know what? You can. I’d love for you to maybe open your mind and eyes to acceptance around you. If someone says they are going through the same, please don’t knock the idea just because its alien to you or what your perception of it is. Don’t be ignorant to think that this presents itself in one way or form.
It’s my opinion that autism isn’t the issue at all, it’s having to fight and having no services or support is the problem.
Indie is presenting with traits Bodhi never did so it’s been that bit tricker to pinpoint. How can I advocate for one so loudly and not talk about this part of our new journey? Does she not deserve the same from me? Aren’t there others out there in the same boat who are starting off again assessment wise or have multiple diagnoses in their house? I need to be able to relate to these parents as much as they do to me.
Some of our concerns are no speech, not responding to name, sensory issues, spinning, lining things up, playing alone or with the same items, pushing/pulling you as a means of communication, covering her ears, closing all doors, turning on and off the lights, poor eye contact, doesn’t follow direction, doesn’t wave goodbye... to name but a few.
But let me tell you about all the positives. My Indie is my rainbow. She is my beautiful doll who was sent to me after the loss of two babies in 2015. Her arrival was most anticipated and a big celebration.
Her eldest sister held her in her arms when we came home and fell asleep with her on my bed, feeling what we were all thinking. Thank God she is here, safe and sound, finally.
She is the one who helped Bodhi come on. She arrived when we were mid diagnosis with him. We were unsure of his reaction but the devotion he showed from day one, he doted on her. He forehead to forehead kissed her. He was non verbal when she arrived and she is his biggest fan.
The biggest eyes, beautiful smile, the curls... she loves tickles, hugs me and gestures to clap handies, loves her dolls, has lots of babble, so we know we just need to figure out a way to encourage her to try. She is independent, loves books, is the biggest Toy Story fan, has a family who will rally around her, a big brother who has become very protective of her, sisters who call her little Miss Sassy pants as she takes no s**t from anyone! Parents who have been down this road before and will nail it this time around, now we know a little bit more about the navigation.
This last week, I watched for cues and saw that she loved a particular song and got very excited about it when it came on. I took this opportunity to enter her world and I am so happy I did. I sang that song with her and left a gap here and there for her to fill in and she did. It was the first time we heard her little voice.
We won’t sit around for a minimum of two years waiting for an assessment while we lose this crucial early intervention time. I have witnessed first hand how much my son came on in that time frame with the right people and tools in place.
It was said at a conference recently in front of me that “there are no services, the system is broken and, look, it’s not going to change anytime soon.”
I felt very uncomfortable with this statement. Not to say it isn’t true but the fact there are tens of thousands of us in the country who are supposed to roll over and just accept it?
I’m sorry but the last time I checked, my name wasn’t Fido, I don’t sit and I sure as s**t don’t stay, next they will be asking us to fetch.
Its normal to be angry and get a bit resentful but you do not have permission to stay parked there. It serves no purpose in being bitter, it does nothing for your child, but getting busy does and will.
Follow Lenore on her Facebook page Out in the Sticks with Six.