Monthly Archives: February 2022

Autism Life

Autism Life: A different kind of Hard

To the parent complaining about the variety of choice in school meals. I have no comment. I am just relieved that my son is eating, even if his meals each day are identical to the day before!

To the mum who is worried about the loss of a school cardigan, and circulating WhatsApp messages for everyone to check their children’s bags. I’m sorry I never replied, cardigans don’t feature on my list of priorities, because just getting my son to wear clothes, is my main objective. No school wants a naked attendee!

To the teacher who questions why I forgot my daughter’s reading book, the book which should be returned on a Thursday to allow a 48 hour quarantine. I’m sorry, but I was writing an annual review submission, for my son, my seven year old whom I would love to hear read, but has not met that milestone, yet!

To the father who posted a video of his one year old son, and the word “daddy” being spoken so clearly and confidently. I’m sorry I didn’t comment, but the pain in my gut was so strong, because I never had that moment. And when I did, I was too scared to post it on social media, because my son was five years of age!

To the crowds of parents who meet up after school or on weekends, and drink coffee while their children run off and play. I’m sorry I am unable to join you or sit and relax with a mug of my own. I need to watch my son constantly. He may decide he is finished and walk away, because that’s the way his mind works.

To the grandparent who rolled her eyes while I sat on the supermarket floor, the one who tutted and said the word “discipline” under her breath. Iā€™m sorry but I have no words to respond, because my attention is always on my son and how I can help him. But I would like to sit her down and educate her, and highlight her ignorance.

To the other parents like me who raise their glasses to achievements that are so small to others but so huge to us, I’m sorry we don’t shout louder, I’m sorry we don’t celebrate bigger. I’m sorry we let those others get to us.

I will cook pizza for every dinner. I will loose every cardigan. I will forget every reading book. I will work for hours on my son’s speech. I will sit on any cold floor to provide support.

Because every time I prioritise my son over the mundane, we see achievements. We see milestones gained. We see accomplishments.

We have bigger things to fry on this side of the fence. Come over this side anytime to see how we do things.

Because our hard is harder than any lost cardigan!

Autism Life, school

Autism Annual Reviews: It’s a Joint Approach

It is tough having your own development and progress analysed and dissected.

It is a hell of a lot harder when it is about your child.

I have been to many annual development reviews for my son. Some I walked into happy and confident, but left in tears, with a sick feeling in my gut and emotions that took months to heal from.

However, the last few years I have left feeling empowered and motivated to strive forwards to new targets and goals.

Annual reviews, for special needs children, vary extremely and unfortunately it is down to the people who support your child, their ability to communicate, support and collaborate together towards a common goal.

For Rhys we are always honest. We sit down as parents before every review and we discuss the truth – nothing sugar coated or missed, everything factual. We discuss what we want Rhys to work on, where we are not seeing progress and where we need help as parents.

Then we send the black and white text to the school, our submission for review.

Reviews are tough, they highlight the struggles, they are the formal way of showing how far your child is behind their peers. But they also shine a light on the achievements and goals they have met over the year, and whatever we need to do to get more of those moments, is what we strive for.

Every review we focus on Rhys and what he needs, or how we can work with the school to smash new targets.

We are lucky.

We have a great school setting and support for him, where school and home can blend into one. Where his teachers know all about his family and out of school activities, and we can work with the school to jointly focus on the same elements.

But it has not always been that way. I have left previous reviews and meetings feeling the need to throw up in the playschool gutter like a cheap drunk who can’t handle their emotional booze!

It took time and setbacks to find the right setting for Rhys. The support we get now was not handed to us on plate, it was fought for and as a result of set backs and tough emotions, we found our way.

The annual review is there for parents, teachers and professionals to ensure the best for their child and their needs. If your child is not central to those discussions or you as the parent are not getting what you feel is in the best interests of your child, you are part of that review and have a equal say in changing that.

Make sure you fight for your child. Prepare yourself for the review. Focus on your child’s needs and how you can all work together to achieve it.

Benefits

Autism: The Childcare Struggle

There were two points I made to the BBC while I sat behind the camera in my dinning room, as my son ran back and forth, avoiding a collision with the Golden Retriever!

Read the BBC article here.

The first point was obvious, the need for more funding, to ensure childcare provision for our children.

But the second was just as vital.

It was to provide existing childcare the support and education needed around special needs care.

My points were all in support of a cross-party Senedd committee report which said that 38% of councils did not have enough childcare for disabled children anywhere in their area.

I have received funding in the past to put Rhys in wraparound care or holiday clubs, but it has not worked. Not because the money wasn’t available, I was lucky and fought and got a nice sum to pay a wage for the entire summer. But the educated staff, the structure, the knowledge and experience wasn’t there.

We don’t need separate childcare facilities. We need to build on the facilities we have got. We have to adapt the way current childcare is run and make it available for all abilities.

For that we need the funding, but most importantly our childcare needs the support and education to know how they can help.

Autism Strategy, Speech

Autism Calendar: The Key to Daily Communication

Rhys didn’t want to go to school today.

He wanted to go swimming!

“No School!” he shouted, his words clear and audible as he desperately wanted to get his point across, “Swimming”, he added.

As we reached the bottom of the stairs, Rhys’ chanting of “No School!” continuing with every step, he approached the wall.

“School” he said, placing his finger on the chart.

“Yes Rhys, school. Then judo. Then swimming” I confirmed, touching each picture in turn, “Two sleeps”

It didn’t make him happier, but it made it clearer.

The calendar is a new addition to our home. It is a communication tool to help my son understand what is happening that day, and what is planned for the rest of the week.

Because Rhys actually likes school. He jumps in the taxi every morning and runs into the class each day. It is the understanding of what is happening that day that creates the anxiety. The fixation of an idea in his mind is what is hard to change it is what creates the tension.

This calendar is the key.

Well I sure hope it is!

The calendar we have used is available to purchase here.

To read more about the use of schedules you can read a step by step guide or explore further strategies across other pages on our site.