Aug 13, 2012

A Mother's Interview - Me, My Kids & AUTISM

Creating this interview really hit home for me. Owen, a child with autism is about my son's age and is the son of a dear friend whom I've known for years. Owen's mother, Liz has gone through many uphill battles dealing  with her son's condition while trying to balance life at home, a dream for better education and raising her two children on her own.

This is her personal story about what she has gone through to get this far...

Owen - Autism doesn't even cross his mind!

Liz thank you so much for sharing your story with my readers, it means a great deal to me personally as a friend and a father! Your strength is unparalleled and your courage is inspiring, please never change either. I hope that readers will have a better understanding of what it takes to not only raise a child, but to deal with autism as well.

Liz: "No, thank you for allowing me to tell my story! If this just helps one person to not feel so alone with their struggles, well that’s all I could ask for. Regardless of who our children are or what battles they must endure, they are our children and we love them and fight for them just as much as any other parent would.  We all play the hand we’re dealt with the best ways we can. Life situations like these are made easier by having family and friends like you for support!"

So please tell us a little about yourself and your children?

Liz: I was born in 1977 and then my sister was born in 1979. We had a “normal” happy childhood. Our parents split in 1992 and we remained with our father. In 1996 I moved out and in December 1997 I gave birth to my daughter Denyra. Her father and I split in 1999 and he has always been involved in her life and we remain friends. Due to having such young parents who struggled financially and emotionally, Denyra grew up “fast” with regards to life issues.

In October 2006 I gave birth to my son Owen. He was a surprise after an eight month fling and his father decided while I was pregnant that he wasn’t interested in being a part of Owens life so Denyra and I knew we were doing it alone still. Owen was diagnosed with Autism Spectrum Disorder (very high functioning) at two years old.

Due to having a single mother and my son having no active father, my children are extremely close and best friends regardless of their eight and a half year age difference.

We are all happy and healthy today amidst the daily struggles we face as we still have each other and always will.

What has it been like raising two children on your own, one being autistic?

Liz: Let me just say first off that I am tired and fantasize about sleeping all the time! haha Never mind the physical drain but the emotional and mental drain (feelings of love, guilt, urgency, worry, frustration) are what I fight through daily and are sometimes overwhelming and I hermit away from the rest of the world when I need a mental break.

Raising my daughter for the first eight years was a lot easier as I had the physical support of my sister and father and my daughter’s father’s side. If I was scheduled to work someone would take her to school, pick her up and watch her for me. I also was able to get time off from parenting when her father would take her for weekends and I could enjoy some much needed time to myself. I graduated from College (Social Service Worker) in 2003 but didn’t go further with that career. I instead started working in a large retail chain in 2004.

At the time I had my son my sister had also had her first child and my father was nearly a decade older so they were unable to help me like they had before with my daughter. I found that retail hours were too hard to work around regarding my sons care (he had also been placed in four different daycares by then as none of them could “handle” Owens special needs) so in 2009 I left my job and went back to College for Human Resources in January 2010 (a 3 year course).

In April 2011 Owen lost his place in his daycare as they were unable to care for him anymore and so after I finished my fourth semester out of six I stayed home with him until he started alternate day Kindergarten in Sept 2011. When an Autistic child starts Elementary School they are no longer provided with funding for workers to help out the daycare providers so Owen was home with me during days he was not in school. I had no options as I have no money. I am at the mercy of our Government and Owen stopped existing so it seemed to them at this point.

I tried to go back to College when he started school but having him home and not being in the college environment was too much for me to handle and so I dropped out of that semester. I attempted to try to go back in January 2012 but after a three year wait for Owen to receive his IBI (Intensive Behavioural Intervention) from Erinoak Kids, his name finally came up on their list in March 2012 and so I had to drop out of college again and am now on academic probation.

Owens IBI is daily from Noon until 4pm and is in the next city so as per their policy I have to be in the area in case of emergencies. I sit in my car in their parking lot unless I have enough gas money to go to a mall to walk around or to a park on Lakeshore Road somewhere. His IBI is for a year. I am unable to pursue a daytime job or go back to college until his therapy is completed in April 2013.

I am in the process of finding a suitable evening job while balancing my daughter’s needs and time frames as she is the only person I have to care for my son so I can work. She doesn’t mind at all watching him for me, but she does still have a life with her father and has plans for the summer with him at times.

Martin: "For all the new parents out there, learn from these stories. There's a lesson to be learned, just because you find a nice day-care or kinder-garden, it doesn't mean that your child will be accepted afterwards. Call your local CAS department who regularly investigate day-cares and schools and keep a close eye on each one. CAS can give you the best recommendations and give you advise depending on your child's needs.

Keep a close eye on the progress of your child in day-care or school. Teachers and support workers can give you signs of trouble or learning disabilities earlier on which may help prevent falling behind at school and at home."

A mothers’ worse fear - an escape artist for a child!

Liz: Owen has "escaped" from my house once and it all happened in minutes. It was Valentine’s Day 2010 and we had just come home from dinner at my Dads house. My daughter and I were upstairs and after a few minutes I came downstairs to find the front door wide open and Owens running shoes on my coffee table. I screamed for my daughter that Owen was missing and ran out of the house calling his name.

Denyra followed right after and I pointed for her to run the opposite way to cover more ground in our town house complex. It was very dark and only a few cars were on the road. Within a few minutes (which seemed like hours) a police car slowly rolled up beside me and Owen was sitting on a woman's lap in the front seat. The car stopped and the woman started asking me what my child's name and age were and I knew it’s because he didn't say those things at that stage and he was wearing diapers and had a pacifier in his mouth. I said he's Autistic and she rolled her eyes at me.

Apparently her husband was driving and they saw Owen run out to the street so they stopped and called the police right away. I have no idea why they weren't parked by my complex because I would have seen their car. So the 7 foot police officer comes into my house to get my story about what happened as I'm crying because the shock wore off then that Owen was "missing" and could have been hit by a car.

He said he had to call Children's Aid to report it. I said okay. The way he was looking at me and speaking to me with no compassion or empathy made me feel so judged as a parent. I was literally away from Owen for minutes and he had never attempted to leave on his own before. A couple days later a Children's Aid worker came to my house and because I had been involved with CAS before trying to find daycares and what not, the worker had spoken to my other worker and was happy to say I wasn't under investigation because I had had a good revue and my children's safety was never an issue.

The worker went on to explain how she works with a family of three escape artists (children) from a family that lives near railroad tracks. She told me this to make me feel better, meaning sometimes kids "escape" and it’s not because we neglect them. Especially with Autism, they don't always announce what they're doing or where they're going.

The CAS worker advised me to install a bar on my sliding patio door and I started using the chain on my front door as well. Since then Owen has not escaped again and because he's older, he's more aware of the danger of running on a road and stays on sidewalks (Thankfully!). I'm just glad that even though my daughter and I were a bit traumatized from the incident that Owen seemed un phased and it doesn't hold him back from being adventurous (in a safe way).

Martin: Kids escaping from their homes is a scary event for parents. When Liz text me what had happened while Owen was missing, I couldn't help but think about what I would do if my little Jacob went missing in the middle of the winter night.

My mother one day woke up to me going missing. We lived in the second story of a house which had steep stairs going down to a large, heavy, wooden door which up until then, I wasn't able to conquer. I believe I was around 5 or 6 at the time. As my mother panic and ran out of the house, she saw me walking down the side-walk coming towards her and release a sigh of relief.

When she asked me what in the world was I doing outside, this is what I replied "I wanted some candy, don't worry mom, I waited for the little green man before crossing the street!". The unbelievable thing that still baffles my mom to this day is how I ever lifted the extremely heavy kitchen chair down a steep flight of stairs to unlock the door below.

As parents we need to do everything in our power to keep children safe. Install extra locks that are too high to reach, put a bar across the sliding door, do anything to prevent children from unexpectedly escaping.

What have you learned about dealing with autism?

Liz: What have I learned? Hmmm, well Autism is stubborn to the point of rarely giving in. From what I’ve lived with and researched Autism is nearly uncontrollable for the person who is born with it. No, it does not come from the immunizations given to babies or toddlers! The symptoms are most visible during the same age children receive their needles! People are born Autistic and it comes from the combination of both parents mixing their DNA. Said parents could have five children all who are Autistic or four children that are “average” and one who has’s just one of those things in life range and I am lucky Owen is high functs about which to me means he is able to control his body and speech more than some others with Autism.

Carly Fleischmann is a girl who opened my eyes to the truth of Autism. She has written books and has a blog etc. because she taught herself how to type with one finger in order to be heard because she can’t control her body or mouth. Autistic people are JUST like us on the inside and are trapped inside their Autistic bodies where they are “wired” differently than we are and receive messages through a different route than we do.

I compare my sons inner needs/wants to my light OCD (Obsessive Compulsive Disorder) where there’s something inside him strongly urging him to do something to feel relief or to feel good. Thinking about him this way can make it easier for me to accept what he wants (needs) to do compare to what I want him to do at that moment.

The spectrum of Autism is a huge range and I am lucky Owen is high functioning – which to me means he is able to control his body and speech more than some others with Autism.

Carly Fleischmann is a girl who opened my eyes to the truth of Autism. She has written books and has a blog etc. because she taught herself how to type with one finger in order to be heard because she can’t control her body or mouth. Autistic people are JUST like us on the inside and are trapped inside their Autistic bodies where they are “wired” differently than we are and receive messages through a different route than we do.

I compare my sons inner needs/wants to my light OCD (Obsessive Compulsive Disorder) where there’s something inside him strongly urging him to do something to feel relief or to feel good. Thinking about him this way can make it easier for me to accept what he wants (needs) to do compare to what I want him to do at that moment.

Autism thrives in routines and is overwhelmed by breaks in routines and over stimulated in large crowds or with loud noises. If these things happen I need to remove Owen from the situation in order to calm him down even though he is very social.

Autistic people usually have “favourite” things that they excel at. So far my son has developed real interests in dinosaurs and animals. His favourite places to go are African Lion Safari, MarineLand and Bronte Creek Provincial Park. His favourite movies are from Discovery Channel, National Geographic and Disney’s animal films.

Since birth Owen has loved and been fascinated with water. He was calm in every bath since birth and has now been teaching himself how to hold his breath and swim. He also loves watching water fall or run. Like every other boy he loves dirt and mud. He likes to watch the dirt or sand fall or blow away when he throws it up in the air.

He also likes to take things apart and for a while he had a “thing” for objects that spin and has since undone all of my dresser knobs. I have been told that taking things apart means he will one day be putting things together and may excel at building things....?

The most frustrating part of Autism is communication or lack thereof. Autistic people, because they are “normal” on the inside, get just as frustrated as we do and they may show “bad” behaviours as a result. I.e. biting, hitting, screaming, hurting themselves or breaking things.

Whether it’s through sign language, sounds, pictures or movements, eventually Autistic people will find a way to communicate but it can take years. Carly Fleischmann learned how to type as a teenager with one finger and has stated that her Doctor had referred to her as “retarded” right in front of her not realizing she isn’t developmentally challenged. Carly has also said that the reason she flails her body uncontrollably is because it feels like a million ants are crawling over her body. Their nerves are “wired” differently but their brains are like ours. Remember that they are “trapped”.

What are some of the challenges you face with Owen?

Liz: The first challenge I had was finding a daycare that could “handle” Owen. Before he was diagnosed and I had come to terms with the fact that my one year old child was “different” the signs were starting. His lack of communication caused him to bite, hit, kick or pull hair due to his frustration. Children’s Aid was the agency who helped get us a suitable daycare for him.

They also got me in contact with R.O.C.K. (Reach Out Centre for Kids) who did behavioural assessments on Owen. Erinoak Kids did some language assessments. The frustrating part for me was that assessments don’t equal help and knowing what my child needs but not having someone to apply these practices with him was devastating.

Owen is not a small boy. He is broad and has been 60lbs for the last couple of years. He knows how to use his physical strength to get attention. I needed help. He was placed on a waiting list for a few years due to the amount of children diagnosed Autistic.

During this wait time he was in daycare however not thriving because he didn’t have one on one attention from his providers. He would take out his boredom or frustrations on his classmates and bit or scratched most of them including his daycare providers.  Knowing he had these violent tendencies and losing my mind begging Erinoak in tears and sobs couldn’t get them to bump him higher on the wait list nor was I provided adequate help to stop these behaviours. Eventually he was given some daycare help we were hopeful would be enough for him but a few days before this new routine was to begin the daycare said he had to leave the daycare, he was too violent.

Owen is still an average child as well as Autistic so there are times he will “push the envelope” like any other child does, but because he has those behaviours on top of his own it can be maddening.  Not understanding or maybe it’s just not caring that I am the parent and what I say goes is most difficult for me at the moment. Power struggles with a child I can’t really reason with is hard. I end up using bribes with him to get him to comply with what I’m asking him to do. Usually promising fast food or swimming does the trick but they’re not cheap! 

However what’s more expensive is taking Owen shopping. No matter where we go there seems to always be an item that Owen has to have or he screams bloody murder.  My daughter and I have found some ways to deal with the in store drama for example showing him a much cheaper item and acting excited about it so that we can remove the pricier one from our unpaid merchandise.  Sometimes my daughter will remove him from the store so he isn’t as bored and then I can put back all items he has requested, unless they’re needed. 

The only behaviour I’d like sped up is his potty training. He knows how to go but he rarely if ever will tell someone beforehand. He still wears training pants (pull-ups) size 4-6. I am tired of changing “diapers” but I know one day he will surprise me like usual and hit this milestone.  Specialists have repeated to me that potty training is low on the list for Autistic children. Obviously communication is key and most important.

Dealing with such life changes for me has been the most difficult. Due to his lack of available care at times my income was less than half of what it was before he was born.  Not having the option to go back to finish college and find a higher paying job to give my children financial security has depressed me. It’s felt like Autism has put some things on hold and not only has held Owen back in ways but myself as well.  Now I have more debt acquired from school loans and no job to earn more income from to pay them back or get out of subsidized housing with.  Honestly I have been experiencing and fighting depression (for the first time in my life) on and off since I learned that Owens Autism would become such a battle for my little family’s survival. I can’t believe how many times I got my hopes up that he would get better help just to find out he was only to have yet another assessment. 

For my son there is a light at the end of the tunnel. He proves this every day and is a very smart determined young man. He is doing extremely well in his IBI and is a very loving, caring and polite boy. He has always been affectionate and shown eye contact and is now communicating at a steady rate so I feel very lucky to have him as I know there are children with Autism who don’t show affection or eye contact and who don’t like to be touched (hugs, kisses, tap on shoulder).

What tips would you give new parents dealing with autism?

Liz: I would advise parents of newly diagnosed children to reach out, educate yourselves and get advice as soon as possible. Depending on your child’s severity of Autism you may think you can just do it on your own like you would any other child. This is a mistake only because Autistic children need different avenues of learning and expression and having assessments done through appropriate specialists will help you to understand what it is your child needs to thrive mentally.

Understanding Autism and hearing of similar stories will also help you to deal with your emotions towards your child’s Autistic tendencies. Being of sound mind is the only way to ensure your child heads in the right direction and has the unconditional support everyone needs to become successful.

Most daycare providers aren’t trained to work with special needs children so they need “helpers” or workers from services that your city can and will provide. You may not need daycare and your child may start socializing when they begin Elementary school. By law each child is entitled to an education and now they are provided with speech/language and behaviour specialists who will work with your child throughout their school career. Their job is made easier if your child has had assessments over the years leading up so that they can create a system your child will understand and that they can use for communication between them, also knowing the child’s expectations and limitations is a must.

We are only given so much patience and Autism like other special needs is extremely trying most days but you must remember this child isn’t doing or not doing things on purpose (all the time). We must come down a notch to their level to understand them and for them to understand us. With “average” children our expectations are high so if you have a child born before an Autistic one you must come to terms with it and not expect less from them because they are very intelligent, but realize they do need you to communicate and maybe act differently so they can thrive like “average” children do. Over time they will hit their own milestones and make you just as proud.

How do you feel our health system deals with children who are autistic?

Liz: I have to say that having a low income and going what I’ve gone through in other areas; our health system has been pretty good to us. I changed our family Doctor to one who does work with Autistic children and works alongside Children’s Aid as well.

I receive help from ODSP (Ontario Disability Support Program) in Owens name. I didn’t know to apply to it after his diagnosis so when I eventually did apply they gave me some funding dating back to Owens birth. This monthly funding comes with a drug benefit card and a dental card. They cover 100% of anything Owen needs done.

I have found that as long as I am up front about Owen having Autism he is seen quicker and accommodations are made if possible so he and the medical personnel have an easier time.

Owen is very aware of when he is touched and doesn’t always approve so he has been sedated for stitches on his upper lip after he fell and a tooth went through his lip, as well as for his dental work to be done. He recovered with no incidents.

The only problem I have with the health care system is that too many children are diagnosed Autistic who aren’t. What this does is add years to wait lists for services greatly needed in the first few years of a child’s development, my son being one of them. Luckily he is thriving now but I wonder if he had received his IBI sooner would that have helped even more to control his violent tendencies....?

Autism - Local Resources Online:

Ontario Disability Support Program:

Halton Region:

Autism Ontario:

Community Living Burlington:

R.O.C.K.(Reach Out Centre for Kids):

Erinoak Kids:

Carly Fleischmann:

Community Living Burlington:

Halton Region:

Autism Ontario:

Community Living Burlington:

R.O.C.K.(Reach Out Centre for Kids):

Erinoak Kids:

Carly Fleischmann:

Thank you Liz, for your inspiration and dedication as a mother!

I want to thank Liz for sharing this story with my readers, she is truly an inspiration to all parents out there who struggle on a daily basis. As a parent dealing with a child with ADHD, I can relate to the many battles Liz has had to face with organizations, support workers and practitioners. Keep up the great work Liz, hold your head up high, Owen is a great kid.

If you wish to have your story posted as well, please contact me below with a description of your story, hardships and battles. Please also include your contact information.

Martin R. Lemieux
Editor & Author

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