Life with Autism – A mum’s journey

I always get asked “what is Autism?”

Autism is a neurological disorder present from early childhood. Autism is how a person communicates and relates to other people and how they see the world around them.

Autism is a spectrum. As the saying goes when you have met one person with Autism, you have met one person with Autism. No one is the same all people with Autism are diverse just as all people in the world are diverse. We all have our differences we all have an interest. People with Autism just make sense of it differently.

I had known my son (AJ’s) had Autism for a few years now, although he was only statement in June 2016.

My son is a twin so at first we just thought that his brother was talking for him as this is common with twins but then AJ’s speech become none existent and LJ’s speech was progressing.

My son has been different for sometime. We have a big extended family so occasions can become busy. My son would isolate himself or go to a quitter room when things became too much. He used to play with his cousins and always intrigued in what they were doing but as the years went by the interaction became limited. He will interact only when he wants to and much prefers to be on his own. Although he tolerates them being around him.

My son is 5 years old and non verbal. So communicating his needs and wants can be challenging. We are having ongoing therapy from speech and language and working with makaton and PECS. You might be thinking to yourself what is she talking about.

• Makaton- is a simple sign language used to communicate.
• PECS- is communicating with the use of pictures.

Although we are at the beginning of our journey we are making progress and my son is able to communicate through some signs and pictures. For example although he is non verbal he will put his hand to his ears in order to say “listen”

He will get the picture of his juice in order to request juice.

It not all straight forward though. It can be challenging. My son can get quite distressed especially if he is feeling unwell as you can imagine he is unable to tell us what’s wrong. So we do have to guess although as a parent you know when something just is not right with your child.

My son also has sensory processing disorder. This is very common with some children with Autism. It’s where the brain has trouble receiving and responding to information through their senses as they can be over sensitive things in their environment. Some sounds that may not bother us can be painful or overwhelming to a child.

For example my son is over sensitive to noise he will cover his ears if the music is too load or if we are walking over a motorway bridge he will become quite distressed.

Occupational therapy can help though. They come out to your home and assess your child and give you strategies to help with sensory input. There are also aids that can be sourced such as ear defenders although my son refused to wear them or have anything by his ears another type of sensory issues.

Therapies and treatment routes can be a lot to digest but we do our best to meet the needs of our child.

 

But he looks normal?

Imagine being told “he’s doesn’t look autistic!” So I politely say “ what does Autism look like then?” There we go the stunned silence.

My child looks normal, he is so loving and gives eye contact.

My son does not have the stereotypical autism traits. So he won’t sit there and line things up or he does not sit and repeatedly spin things.

He is a simmer though. You will see him continuously jump up and down flapping his hands and sometimes spinning in circles. He loves jumping on the bed! His favourite game.

You take your child up to bed and there like ‘nope you got no chance of me sleeping yet Mommy. I’m gonna jump up and down on the bed instead’ this can go on from anything from half hour to three hours.

Feeling like a zombie!

Sleep was another issue for a while we hardly got any, we usually got 2-3 hours a night. It felt like sleep was non-existent. I was a mommy zombie.

I had to give up my job as the lack of sleep had its side effects. I loved my job as a preschool manager but it was time I put myself and my family first. But you know what it has been well worth it.

My son must have noticed that I was constantly stressing at work and that I was unable to switch off worrying about work, but since giving it up we have had nights where we have slept 7-9 hours a night. I finally feel like me again.

It’s all about being selfless, not by choice may I add, it’s just my child’s needs must come first.

 

It’s tough.

You may think that we have it rough that we just have to manage when things get tough, but we as a family have impressed ourselves. We take the bad days with the good, I have gained self control empathised when my child has gone into meltdown mode, especially when he has lost all control because things have simply got too much for him.

The self harming can be stressful and heart breaking to see and all you want to do it take all the pain away from your child and give them their control back. So I wait reassuring him I’m there until he is ready for me to make it better again to soothe and be there for him but when he is ready. When the meltdown is over and he is in need of me.

I am not just a mom I am everything to my child, I am his voice, his therapist.

I worry about his future where his path is going to lead but we know this life is worth it. He is worth it! Not once do I think what would life be like without him in it. He and his brother are my entire world. We have hope that everything is going to be ok. That people will accept him for who he is and not judge him for who he is not. He was born to stand out in this world! He lights up our world and has opened our minds. I often think what is going on in his mind if only I could live in there for a day.

My child is unique he was given to me for a reason.

He makes us proud every single day, when he completes new simple targets like siting down at mealtimes and eating with a spoon. The simple things like completing a jigsaw and clapping when he’s completed it. The things people take for granted such as the words “I love you” my son has said it once something I will never forget and hope to hear again. The interaction between twins is special and we don’t see a lot of as AJ tends to play alone but when they do play together running backwards and forwards chasing one another we treasure because we don’t see it that often. We treasure every painting made by AJ as he tends to just not want to do it. All these things are big accomplishments.

I am not out to change the world. We want our kids to be accepted. We look at them and see a child. We hope you can do the same.

Love Stacey mum of AJ my unique child.