BODHI’S year in the Shine Centre for Autism in Carrigaline, last year, was the making of our son, which brings me to the joys of autism.
The trust you need to have in order to leave him with someone has to be huge. I gauge his reaction, I watch out for his cues and my son is probably the best judge of character I have ever known.
The jump in positive behaviour and progress from the age of three to four has been phenomenal.
There is no longer as much anxiety, he sleeps through the night, there is no need for medication, he will eat, there is not as much screaming, no aversion to men, he goes for a haircut with his dad and they go swimming, he will come to the shop with me, he now goes to family birthday parties, stays for a bit and actually enjoys them, and he also, wait for it, loves a brunette!
Bodhi ran into that school every single day, he had four other children in his class that he treated as his siblings. They would greet each other every morning with a hug and chase one another around until the doors opened which is where Bodhi would bowl his tutor over with the biggest bear hug and she would squeeze his cheeks and call him her “little Johnny Sexton”.
We all gasped on the random morning he arrived and said; “Good Morning”, just like that, and continued this ritual then throughout.
The work they did with my child and every child in there was absolutely incredible, he tried things for them in there that I had been trying for years with no luck, such as drinking from a cup and eating a sandwich. They taught him to use his words instead of lashing out, how to use sign language to communicate, introduced him to visual schedules, how to use the words “I want” as a prompt to establish what was distressing him, helped him to become fully toilet trained, all the while working with us at home constantly, nothing was an issue and to say my son was in the best hands would be putting it mildly.
You build some incredible relationships with people on your journey, they are a huge part of your child’s development, and are people you or your child will never forget, like the tutor who cried with me in July when she and Bodhi had to part ways.
As parents, we are human, we need a break from our child as much as our child needs a break from us, autism or not. The feeling of being able to walk away and not have to worry how he was, if they would treat him right or if he would be okay is something I can’t even properly put into words.
When the word autism enters your world, you are scared, you worry about the future, how will he get on, will he need someone to look after him or help him when we are no longer there, who would that be, do you put that responsibility on his siblings, what do you do?
You have to stop though, as much as it is the practical thing to be thinking about, you need to focus on the day to day, which is more important as this is what is going to get your child through and reach their full potential.
If your child is studying for the Leaving Cert you don’t keep bloody harping on about it in Junior Infants, you let them be a child as they are small, let them play, let them be free to be themselves, then focus on the subjects that they are good at as they get older. And you support them in their strengths and get the help they may need for subjects they may struggle with. As they reach, pass or fail each test in primary school you don’t constantly refer back to how are they going to cope in the Leaving Cert, do you? You just acknowledge it all being part of the bigger picture, this is quite similar.
Autism enters a whole family, not just the child. The stresses can be daunting, it is very important to note that strategies and supports be put in place for your child’s siblings also as they need an outlet to vent with people who are trained in this area.
With five sisters, I know he will always be looked after, one daughter even mentioned to me recently that if the man she marries won’t have Bodhi as his best man then he is not the guy for her.
My daughters have become so much more open to children with special needs, being accepting of all children and raising awareness in their classrooms and with their peers. They celebrate in every little thing he does as much as we do, they are his biggest supporters and that is a beautiful thing.
They clap when he accomplishes something new, their friends know in coming into our house that they clap too, on any given day you can be faced with a hug or a child who just doesn’t fancy wearing clothes and now they don’t bat an eyelid at what kind of day we are having, it is what it is. Autistic traits are natural.
We are constantly telling our children to stand on their two feet, teach them to be strong and responsible, that it is OK to shine, that you need to talk and it is okay to open up as we are all aware mental health is a huge priority in Ireland. Yet when a child has any blatant differences, society would prefer they blended in and conformed? What kind of mixed messages is that sending?
If you are embarrassed, you need to address your own issues; teaching a child, autism or not, to repress their uniqueness can do way more harm than good, so celebrate the differences.
By accepting a lot of this and going at his pace, Bodhi now has three and four word sentences, he can count up to 40, knows his ABC’s by sight, can write and spell them and his own name. He knows all the months of the year, days of the week, all the various colours and shapes, he can be heard finding a semi circle and a hexagon in random items around the house.
He teaches HIMSELF how to spell, he memorises words in minutes and astounds us every day as he reveals through the physical spelling out of letter shapes or by reciting, difficult words for a four year old. The words recently are iguana, jaguar, elephant, rhino and giraffe. Words that my seven and 10 year old are saying they aren’t even sure how to spell.
I recall an instance where I brought him to school and as we were driving he made a bit of a fuss as we were nearing a junction in traffic when seated in the back of the car at about 8.30am. When we returned that afternoon about 2pm he took out his letters and spelled ‘Yield’ on the table, it was what he remembered earlier that morning, the sign that was at the junction. He waited all day to come home and spell that out.
As I mentioned earlier, he loves films and he loves searching Youtube for clips on how his favourite ones were made. We recite lines from movies still and he belly laughs as I call them out with him.
The intro to some movies will have words such as 20th Century Fox etc... I was sat at the kitchen table a few weeks back and with nothing beside him only his letters he spelled out, “20th Fox Searchlight” from memory. You literally could have knocked me over with a feather. I record these moments and treasure them dearly, this is just as important as any Leaving Cert to me.
He has a huge range of words now, and to think this time two years ago we wondered if he would ever speak.
Bodhi spent the summer on the beach, did a surf camp for children with autism and became a big brother again in June. He adores his baby sister and will ask me to “sit down” and “hold” so he can hold her and he insisted on giving her a bottle the other day. He has a huge interest in jigsaws, loves the trampoline, his balance bike and more importantly playing and initiating play with his cousin and his sisters.
He started a new journey in SONAS a Junior school for children with Autism, in September and I am excited to see what this next step will bring.
I document on my blog ‘Out in the Sticks with Six’ his strides and achievements, along with the realities of parenting six children, I like to share the positives and share our humour in the hopes that another family or parent out there who is just starting out on this journey knows that it can change, it does get better and with the right supports and therapies nothing is impossible.
Also, to reach out and maybe ask me a question even privately, I am not saying I know all the answers but I certainly can relate to the loneliness and struggles and may be able to point them in the direction of someone best suited to help.
The hardest part is accepting the diagnosis and getting yourself out there in terms of asking questions, looking for the support and being proactive. You don’t have to be a part of every group and blog out there, it is exhausting, you familiarise yourself with what is available and then narrow down what works for your family and your child and stick with that, what works for YOU.
You quickly learn his milestones are also yours, I tend to take on his emotions, I felt so overwhelmed at things like him not understanding when we said goodbye to his tutor I knew it was forever, whereas he just presumed he would be back again the next day.
He was absolutely broken hearted the week after when there was no school, he called for his tutor by name in the car and it broke my heart in two. For two weeks after he was lashing out at one of his sisters he would be closest to, he couldn’t communicate why but in hindsight I see he was upset at school being over and this was his way of expressing it. If you had asked me this two years ago I’d be clueless and thinking he was being bold. You learn so much about yourself through your child.
Is autism difficult? Absolutely, but don’t mourn the child you thought you would have, instead embrace the child right in front of you.
In essence, my boy is full of love and empathy and you cannot teach that. He insists on hugging those he takes a shine to and, funnily enough, loves to greet elderly gentlemen he comes into contact with by shaking them by the hand. He loves music and gets emotionally invested and can get quite teary when listening to Nessun Dorma. He has a wicked sense of humour and has this week insisted on calling us, his parents, by our first names thinking it’s hilarious. He also deliberately calls my teenage daughters friends (who are boys) by the wrong names to keep them on their toes, laughing while they try and correct him, knowing exactly what he is doing.
Sometimes, I think he has the right idea, in the words of Einstein himself, who didn’t speak until he was four years old, when asked why not, he replied “ I had nothing to say”.
* In our next feature, Lenore reveals how the family could be facing a second autism diagnosis in their family, with young daughter Indie.