A story of two local boys, one disorder, and two different worlds for them and their families

Two local mothers featured in the Echo last week and spoke about the frustration with the lack of services for their children who are both on the Autism spectrum.

Amanda Biddulph from Lucan, and Tanya Lieghio from Kilnamanagh both spoke of how the HSE model is broken when it comes to care, especially early intervention, which is vital for children on the spectrum.

Both Amanda and Tanya originally contacted the Echo with a story they had penned themselves – documenting how although their sons were on the spectrum they lived in different worlds.

After we posted the piece from last week’s edition of the Echo we wanted to follow up with the piece they wrote. Please find the story of Leo and Max below.

Autistic parents collage 31072017

 

By Amanda Biddulph and Tanya Lieghio

Have you ever been in a shopping centre, shop, park, play area, and the ringing of a child’s screams and crying is penetrating your brain? I have.

Have you ever thought, OH my god, make that child stop crying? Or OMG how bold is that child? Well I have, I’m sure all of us are guilty of this at some point.

Have you ever stopped before those thoughts manifest, and think to yourself, is there something more going on here? No, I bet not.

Max and Leos story parents 1

You see, in our society today, there is an invisible disability. Some people call it Autism, some ASD, some say, 'oh they are on the spectrum'. But what exactly does all of this mean?

Let me tell you what it means, what it means for the children, and what it means for the parents dealing with children on the spectrum.

Here are two different versions of events when it comes to dealing with the type of autism and the level of intervention from the parents of Leo and Max.

Leo is six and has High Functioning Autism, while Max is three and is on the more severe side of the spectrum and is non verbal.

Please see how no child with autism are the same, and cannot be treated the same.

Max and Leos story collage 3

Leo's Story

When my little boy Leo was born, he was the most perfect little thing in the world. He hit every milestone on the chart we, couldn’t have asked for a better child. He slept when he was supposed to, ate when he was supposed to, walked and crawled.

But what we didn’t know was deep inside his brain, things were not as they seemed on the outside, and this disability was raging, building up to show itself to the people that loved him.

Autism, is a neurological disability, it’s graded on a spectrum, which basically means that no two children are the same.

Some children have more than just Autism. There are a lot of secondary diagnosis for children who receive a diagnosis of Autism. Some may be a sensory processing disorder, ADHD, or generalised anxiety disorder to name but a few.

When my son was younger, and it was time to put on his shoes, he had to have his right shoe on before his left and god forbid his socks touched the tops of his toes. Was he just fussy or was he just being difficult?

The older he got the more we noticed. His language was so advanced for his age, and words he shouldn’t know, he knew. He drove a different route to a familiar place, and he became a danger to himself and those around him.

I remember being in the car with my mother, and asking her if she thought there was something wrong with my son. Her words to me were 'like what?'

Deep down I knew what, but I couldn’t bring myself to say the words out loud.

At the age of three, my father approached me, and told me in a gentle as possible kind of way, that he thought my child, my perfect little boy, needed to be assessed for Autism.

Have you ever stood still, and watched your whole entire world crash down around you, piece by piece? I did!

That one piece of the jigsaw that had been missing all along had now presented itself to the people he loved.

But it looked like it was the wrong size, and now that people close to me were noticing, it meant that I was right, those thoughts I had pushed aside, to the back of my head, and they were right all along. There was something wrong.

Straight away, I brought him for an assessment, naive and unaware of what lay ahead.

I thought, we will bring him to the health nurse and she will be able to send us to a doctor and he will tell us what is wrong and we will get on with our lives.

How wrong was I! First we met with the public health nurse, and I was told he would be referred for early intervention. What is this? And how long will I be waiting?

MONTHS, MONTHS and YEARS.

There is nothing that happens yesterday in the world of autism.

I wasn’t mentally prepared for the waiting.

I wanted my answers now like any parent would.

The HSE, give you a time frame of how long you “should” be waiting. The time frame is six months for the assessment of need.

However, if you go over the six months, you then start the complaints process. Which I had to do, so all in all it was eight months before we got to even speak to someone in relation to my child.

My own personal experience wasn’t amazing, I was left totally deflated, and in the end, I had to go private to get a diagnosis, a diagnosis that the HSE wasn’t able to give, yet they were able to accept. This I feel is due to the lack of funding.

Every day for us is a battle, due to Leo's anxiety and we never know what way the day is going to go like. Will it be a good or a bad day?

Leo attends mainstream school, and is one the of brightest kids in his class. He can talk all day long about space and can read to the level of a 10-year-old. Academically, we don’t have to worry, socially however, is a different story.

Doors remain locked at home, as he is a flight risk, and the level of violence he shows towards us and his sister is a big concern. Lashing out due to sensory overload. Nothing he can control.

Leo wakes up and his day is all about routine. Where he sits for breakfast. he can’t get dressed before he has his food. He must use the same cutlery and do things the same way every day.

His bedtime is 7:30pm every night. Going on holidays or away for a night causes a big stress on his little mind, his anxiety reaches an all-time high.

He worries about everything. Are you driving at the right speed? You’re not going the right way! Are we lost? Different things cause a stress that you or me in the nuero typical world will never understand 

Leo also has a sensory processing disorder he does not like the texture of food in his mouth, he has food aversions and will gag if he eats something he does not know.

He will scream and melt down if his socks touch the tops of his toes. Leo cannot stand the shower. Washing his hair has caused massive issues to the point he becomes a danger to himself. Leo will put his hands in his ear if there are loud noises and gets very stressed 

Some of Leos senses are under sensitive and need to be stimulated. His vestibular senses (inner ear) being one which causes him to spin excessively to stimulate the feeling his body craves

Max and Leos story collage 4

Max’s Story

When Max was born, there was no sign of anything like Autism. He reached some of his milestones, as well as learning words like mama, dada, the usual babbling baby stuff.  

He interacted and communicated - laughing, smiling, making funny faces and clapping hands.

Max was delayed when it came to crawling and walking, but we never thought any more of it than just being a lazy boy. Max is so chilled out and easy going, and so affectionate to everyone he meets.

To look at Max he looks just like a normal boy of his age, except he doesn’t speak. He cannot communicate to us how he feels. Is he sad? Is he happy? What does he want? Is he in pain?

He also has an extremely high pain threshold, so when something is wrong it’s very hard to tell with him. It’s always a guessing game.

Max was in hospital when he was a one-year-old, and went in with his words, and came out with none. He hasn’t said a word since then, this is not uncommon in the world of autism for a child to regress.

Max can no longer clap hands, he doesn’t make those funny faces, and basically lives in his own Max bubble, which I long so much to be a part of.

Max's day begins at 4am, he needs very little sleep

Max's sensory issues are very clear to see. He flaps his hands, bites his hands, and spins in order to receive the input his body requires - input you and I will receive by just simply walking.

Children with autism and Sensory Processing Disorder (SPD) have senses that are either under sensitive or over sensitive, which is why situations that you and I may find ourselves in are completely over whelming for children i.e. parties, family occasions, a simple visit to Santa may end up in tears for this reason.

Max does not like his hair being cut, so a trip to the barber can take two or three people to cut one child’s hair. 

Max does not like loud noises and will show this by walking around with his hands over his ears and seek out a quiet refuge - this is quite hard to watch when he loves interacting with others. 

We started to think, what is going on. Like Amanda, we began to look into things a little bit further.

Our first point of call was also our health nurse, who referred us for am assessment of needs, again the long wait began.

Due to the lack of staff in the local health service we were delayed even further waiting on this assessment to be carried out.

When we finally got to go to our assessment of need, again like Leo's parents, we were advised that Max had all the signs of being on the spectrum, but was too young to be diagnosed.

He would need to be reassessed at the age of four before he started school. Four years without receiving the ever so important EARLY INTERVENTION which can change the life of a child with Autism, if received in time.

How can it be received in time when the wait to even speak to someone is so long?

How could any parent sit and wait on the HSE? How could we wait until Max was four, knowing that there was something wrong and do nothing about this?

So yet again, like Leo's parents, we paid privately out of our own pockets, receiving a diagnosis of ASD and Sensory Processing Disorder.

Max is almost four, and still hasn’t got one word. With this diagnosis we were able to get Max a private preschool for children with Autism. This Is HOPE in Inchicore.

Max has come on in leaps and bounds in some areas, like his eye contact, his walking, and he is generally a happy go lucky little boy.

Max needs speech, psychology, and occupational therapy which we are currently on he WAITING list for.

We have paid privately which does not come cheap. Speech therapy alone can be anything up to €150 per hour.

Funding is a real issue when it comes to services and there are huge waiting times for the three main interventions (Speech and Language, Occupational Therapy and Psychology) leading many to pay out of their own pocket.

Lack of educational resources for children with Autism is a huge concern. There are serious changes that need to be made.

Some children with Autism like Max may not be able to attend a mainstream school, however the number of ASD units are so low that it will be a struggle and Max may have to travel or attend a mainstream school regardless in order to receive his right to education 

These are just two examples of two children with Autism and yet you can see how different they are you can put 100 children with Autism in a room and none of them will act, behave or have the same needs as the next. 

The reason we are writing this article is to try and raise awareness and make people understand what exactly it is like for these children and their families.

Please don’t take this as a sympathy vote as all we want is for people to understand that these children have different levels of tolerance.

Please do not judge them or us. What may not look like conventional parenting to an onlooker and what works in some people's homes may not work in ours. Unless you walk a day in our shoes you are not entitled to judge, comment or stare. 

We are so proud of our little boys, albeit challenging, the rewards we receive from them are 10 times greater than you could ever imagine. We love them and would not change them, but we would change how society views them. 

We are the proudest parents and will continue to fight to help people understand the world of Autism. 

The HSE need to apply better services and time frames for waiting times as the lack of services are having such a detrimental impact on our children’s lives. Without these vital services it is our children that suffer.

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