The team at Special Needs Book Review is so pleased to share this awesome interview with Jenny Berger. Jenny is the mom of three children one of whom has autism. Take the time to read her interview and learn about her children’s book and what it is like raising a non-verbal child with autism. Learn about the red flags that alerted them to have their child evaluated, the day they received the autism diagnoses, the characteristics of a non-verbal child on the autism spectrum, the therapy and treatment required and the repetition and patience it takes to accomplish each small step in their son’s development.
My Brother Daniel by Jenny Berger is a touching story about a little boy explaining and coming to terms with his brother’s autism. My Brother Daniel is told in the words of his four year old sibling. Young children (3 -7 years) in families with an autistic child will enjoy this book as will parents and friends of children with disabilities. The beautiful illustrations in My Brother Daniel were drawn by Australian artist, Bronwyn Deveau from Port Macquarie, New South Wales.
The team at Special Needs Book Review thanks Jenny Berger for writing a guest post introducing her beautifully written and illustrated children’s book and for agreeing to take part in our Author Interview Series.
Lorna: Thanks for making time to answer our questions. My Brother Daniel is based on your own son with autism. Tell us about this child and his two other siblings. What were some of the earliest signs you noticed that made you think your child might have autism?
<<Jenny Berger: Daniel is my middle child. He was a very placid and contented baby. Unlike my first child who cried a lot, seemed moody and was much more difficult to please, Daniel was a very easy infant. Shortly before his first birthday, I started to notice that he was quite unresponsive to noises and the usual stimuli. He didn’t seem to want to play with anything and I couldn’t get his attention by saying ‘Look Daniel, look at the dog’ or ‘the moon’ or ‘the airplane’. The penny dropped for me when I was walking with him in his stroller and a fire truck screamed past. Daniel didn’t even turn his head. I started thinking that perhaps his hearing was impaired and I took him to the doctor. Several audiology appointments later it was confirmed that his hearing was perfect. We were then referred to a pediatrician who diagnosed Daniel with ‘classic autism’.>>
Lorna: Your picture book explains some of the characteristics of a non-verbal child with autism. How do you communicate with your child? Is he receiving therapy to improve his communication skills?
<<Jenny Berger: Typically, if Daniel wants something he leads me to the item and pushes my hand at it.
He has been receiving various therapies since he was 18 months old including ABA, Verbal Behavior, DIR/Floortime, video modeling, sensory processing programs and a combination of all of the above. Initially, despite having some excellent therapists, we did not make much progress. He did not respond well to the hand-over-hand method of teaching as his concentration and receptive language was poor.
When he was five I found a new program supervisor who suggested that we had been pitching his therapy too high. She encouraged us to focus solely on developing ‘joint attention’ and attending skills. It was an excruciatingly slow process but after about a year of simple, focussing exercises, he was able to ‘follow a point’ and to concentrate for a short period on a task. This was a huge turning point for us as I felt that he had become a learner. I could point at a puzzle piece or a number and he would pick it up and follow where I was indicating.
We are currently teaching him to use an iPad app to make requests and I am hopeful that with an enormous amount of repetition, his ability to communicate will improve.>>
Lorna: I read that about 25% of people diagnosed with an autism spectrum disorder could be considered to have nonverbal autism. Also that among this 25% there are many differences in their abilities to communicate. Can you please add what you have learned about this?
<<Jenny Berger: The differences between the abilities and deficits of non-verbal autistic children are vast. I have recently met a non-verbal five year-old who appears very similar to Daniel except that he has learned to communicate by typing and he is able to type full sentences. It blows me away every time as I cannot imagine Daniel being able to do that. Daniel seems to have a processing disorder that prevents him from sequencing. I suspect that if you cannot sequence, you cannot string words together, verbal or written.
I have seen kids that develop language because they start to understand what they need to do to get their demands met and their communication just takes off. I feel that Daniel understands what he needs to do but he just cannot do it. He struggles to find the words he needs. Sometimes he will even look me straight in the eye and I know he is trying. But I have learned that anything is possible through repetition. In our house we have “the thousand hour” rule. If you do something a thousand times, you will get it. I can see that through repetition I am able to teach Daniel a lot of basic things. He has learned that two comes after one. He knows what to do when I say “put your shoes on” and that “lets go” means we are heading to the car. I suspect that most of his learning will be through repetition and pairing the items and actions with the words over and over again. The other important point I have learned is that autism is a very strange and poorly understood disorder. Having a child on the spectrum does not make you an expert. Autistic kids are all so different with so many variations and processing problems that you cannot presume to know how to unlock another person’s child.>>
Lorna: Also parents are told that late language acquisition is not necessarily an indication of low IQ or poor prognosis. Are you hopeful that your child will eventually develop language?
<<Jenny Berger: I agree that late language acquisition is not necessarily an indication of low IQ or poor prognosis. The child’s progress often accelerates once the connections are made. It may just take time to find the key.
As far as my Daniel is concerned, as the years pass I am growing less hopeful that he will develop language. I can imagine him being able to learn individual words but I am not confident that he will ever hold a conversation, verbally or otherwise.>>
Lorna: In your area of Australia, do young children with diagnosed special needs receive free early intervention programs? Then does this support continue when they enter the public school systems?
<<Jenny Berger: Australia has a free early intervention program which helps to identify and treat kids on the spectrum in the first few years of their life. The public school system provides additional support through teacher’s aids but as with most countries, the level of funding and support is never enough for the children who are struggling.>>
Lorna: What comments have you received about your book that has made all the work involved in writing it worthwhile?
<<Jenny Berger: The greatest benefit of writing this book is that it has given my other children a platform to discuss Daniel. The process has helped them to understand and come to terms with our situation.>>
Lorna: Thanks for this interview. In closing, what are a few tips you can give other parents who are raising a child with autism along with other children? How do you make sure the autistic child’s siblings do not feel “neglected” or feel you, the parents, spend more time with him than you do with them?
<<Jenny Berger: It’s always tricky to give each of your children enough attention, even in typical families. I think it’s always a good idea to make one-on-one time with every child as often as possible. I don’t have the answer other than to say that we try and encourage the sense that having Daniel makes our family unusual but special and that we are all in it together. >>
Buy My Brother Daniel Amazon.com Amazon.ca
READ Also:
A Child with Autism Through the Eyes of a Younger Sibling: My Brother Daniel by Jenny Berger
Best Five Children’s Books on Autism Reviewed by Special Needs Book Review