A family’s struggle coping with autism

Walaa Ajjawi

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Photo Credit: jasoneppink
Photo Credit: jasoneppink

Growing up as an ordinary child is not an easy thing to do, with the different phases a child goes through from childhood to adulthood, so one can only imagine how difficult and frustrating it is to grow up with autism, for both the child and the family.

“It was very difficult. I mean, your child isn’t looking at you, your child isn’t responding to you; at that moment you realise, my child is not ok. It is very difficult.”

Jacob is a six-year-old boy who suffers from a severe form of autism disorder. Doctors in Ireland have advised his father, Max Seligman, to continue further treatment in the US by sending Jacob’s tests there. The Seligman family have been struggling to adapt to this situation since Jacob was diagnosed.

However, what many people do not realise is that there is another side to autism, another struggle: the financial struggle. Mr Seligman spoke about how hard it is for a parent to realise their child is going through something they cannot help with, and how his son’s disorder is affecting his family’s life, both emotionally and financially.

First of all, how was Jacob diagnosed with autism? Were there any tell-tale signs? “Jacob was quite young, about one year old. It was up until the age of one that he seemed normal; after that, he wasn’t making eye contact or he wouldn’t respond when you called his name. That was the moment my wife and I sat down and said to each other: ‘Listen, something is not right’.”

They then took their son to a private clinic where they did psychological and physical assessment and it was determined he has autism but it was not specified what level of autism he has. Doctors determined Jacob has floppy muscles, which means he needs physical therapy. He also saw a speech therapist who said Jacob is likely to face speaking problems if he does not continue therapy.

All these different kinds of therapies and treatments struck Mr Seligman as being very expensive.

“There is speech therapy, there is physical or muscle therapy to help relax the muscles. There are other things that can contribute like fluoridation of the water; we need to have a special water tap installed so that he can drink clean, pure water because the fluoride affects him. The tests alone may cost somewhere up to €4,000. We don’t know how much it could be, but we know it is quite expensive.”

For autistic people, and especially children, there is, in many cases, very little communication and interaction with others. Autistic children tend to isolate themselves and become unable to talk to others normally, as is the case with Jacob.

“Jacob needs play therapy because he is not interacting with other kids. He plays alone; he went to a kids’ club and he started making a Lego tower. He wasn’t playing with the other kids but the other kids were bringing him bricks. They were playing with him.”

Mr Seligman added that Jacob does not even play with his twin sister, Mia, who is aware of Jacob’s condition but does not fully understand it. He said she always says: “This is Jacob, he is ‘austic’.” She calls him “special and different”.

When asked about how Jacob communicates with him and his wife, Mr Seligman said he talks to them but only says a few words. He knows thousands of words but uses only four or five, and he would rarely say the word, instead just pointing at the thing he wants or needs.

Jacob has been getting treatment in Ireland since he was diagnosed with autism about four years ago. However, doctors in Ireland have recommended Jacob’s parents to send his tests to the United States. When asked why he thinks they were advised to send his tests to the US, he said he thinks it is a standard procedure seeing as certain types of tests in relation to autism are done only in the UK and the US.

One other reason Mr Seligman and his wife want to send Jacob’s tests to the US is to determine if he needs further tests, especially in relation to nutrition as Jacob cannot eat normally; he has a specific diet plan. Mr Seligman said that a doctor in the UK told them, after looking at Jacob’s tests, that Jacob cannot eat wheat. Therefore, his parents want to send the tests to determine what Jacob can and cannot eat, among other reasons.

“He has limited foods, he has sensory issues, so the food has to be dry, and he has to be able to pick it up with his hand. Then there is food therapy, which is not just for him; it is for the entire family, because he cannot eat grains so the entire family will not eat grains.”

The Autism Assistance Programme began with the aim of helping autistic children by giving them guide dogs. Dogs are given to families who have a child that suffers from autism. It began five years ago and since then, approximately 110 dogs have been given to families all around Ireland. Guide dogs help the autistic child interact with people and family members; they help to improve the behaviour of an autistic child.

Jacob recently got a guide dog for many reasons, but the main one was to prevent him from running away, as he would sometimes open the front door of the house and start walking until he is found by someone. He does not stop until someone stops him, Mr Seligman said.

“The decision to get a guide dog was not advised by a doctor, but it is known through experiments that getting a guide dog helps the child. We had to go on a waiting list for two or three weeks, and my wife had to go to Cork for a week to get training on how to work with a guide dog.”

Is he helping Jacob? “Well, we have had the dog for only a month so we do not really know. I mean Jacob loves walking with the dog, but whether he is helping him or not, we don’t know that yet. I do, however, believe the dog will help Jacob a lot.”

Jacob’s parents were advised to put him in a school for autistic children, but Mr Seligman said they wanted him to learn how to interact and communicate with people, which is why he was put in Griffith College’s primary school. He added that Jacob has enough knowledge not to be in the class he is in: “While most kids his age are able to count from one to seven, Jacob can count up to thousands.”

There are many organisations in Ireland and all around the world which support families who are affected by autism. Founded in 2011, Irish Autism Action helps families deal with autism, both financially and educationally, and seeing that it is set up by parents of children who suffer from autism, the organisations also offers emotional support.

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Walaa Ajjawi