A Family’s Journey: Charlie’s Story

My name is Dan Essar, and my wife is Amanda Essar. We are parents to our 3 year old autistic son Charlie. Prior to Charlie’s diagnosis and shortly after he was confirmed to have autism was a very scary time in our lives. We did not know much about autism, nor did we have any family members with a diagnosis. It was an overwhelming and emotional experience to say the least, with many stressful days and sleepless nights. As parents we were proactive, we bought books, did what research we were able to do and upon hearing about grants, began looking into therapies. I had thought that once Charlie was diagnosed that finding therapy would be a seamless experience and the government grant of $8,000 would be more than enough to cover needed costs. As any parent who has gone through the early stages of identifying autism can contest, it is an emotionally draining experience, and the thought of early intervention gave us great hope. That, however, was immediately crushed.

In our early stages of searching the Government of Saskatchewan directory for autism intervention centres we were completely overwhelmed as there is a lengthy list to choose from with various types of therapy. Because we knew so little about autism, we had no idea where to begin so we began to desperately call. We would find that the waiting lists were long with many centres not accepting new clients for as long as year and in some cases several years. Not only that, because of Charlie’s age at the time (18 months), many centres did not have the resources for children that young. Much of what we had read up to that point about early intervention stressed the importance of immediate action and in that moment it felt hopeless to find help. We were fortunate enough to find therapy through Sask Behavoural Consulting, which is ran by Brianna Dellhazey who came highly recommended for early intervention by other therapists. We were fortunate enough to fill a cancellation spot short notice and begin Charlie’s journey with autistic therapies. Our joy however, was short lived as we soon found out that the Government grant of $8000 would only cover 3 months of therapy costs. Not only was it frightening to go through an autism diagnosis and then find out there is little to no availability for help, it was beyond devastating to find out the cost for therapies are unaffordable. Because we love our son we did everything we could, we had taken money we had saved for years and agreed that we would do anything we could to assure he had the best outcome. We are lucky, many other families are not, not only were we lucky to find therapy, but we were also lucky to have the means to pay for therapy. Charlie spent 9 months at Sask Behavioural Consulting (SBC) and we spent a total of $16,000 out of pocket to keep him there. The Federal Government also provides grants, however, in order to continue therapy, you must pay out of pocket until tax return season. Should we have kept Charlie in the therapy for the full year it would have cost a total of close to $30,000. With combined Government and Federal grants, coverage is roughly $12,000, leaving families to pay $18,000 a year should they want that type of consistent help. Charlie spent two hours a day from Monday to Friday at SBC to put this into perspective.

When we heard about Autism Services Little Tots ABA Therapy, we jumped at the chance to apply. My wife and I were beyond nervous during the process as it meant so much to us to be accepted. Not only would Charlie have a chance to attend regular therapy for 4 hours a day from Monday to Friday, but the Little Tots program is essentially free. I remember shaking I was so nervous during our first interview, the thought of Charlie having regular therapies at such a young age at the cost of nothing was beyond our comprehension. Especially after what we had been through prior, you feel so beaten up emotionally and physically. Sleepless nights, constant worry, high bills and no little direction of what to do or where to go, I can’t count the number of times we cried out of frustration. This program seemed beyond belief, not only did we feel it was the best chance for Charlie’s development but the best chance for us to be healthy as a family.
Before Charlie was accepted into ABA Little Tots, he was extremely limited verbally. He made seldom eye contact, did not overly acknowledge us in a room, participated in repetitive play and struggled with emotional regulation. Charlie was late for most development milestones and only started walking at a year and half. He seemed to regress on what little skills he had and struggled with basic tasks. For us as parents, the lack of acknowledgement or excitement when we entered a room was heartbreaking, you feel as if you did something wrong for this to happen. Playing and interacting with Charlie could be challenging as he would be hyper focused on mundane activities, such as spinning a wheel on a car, slowly bouncing a ball or banging on a pot with little desire for us to be involved no matter how hard we tried. Any interruption to these activities would result in unconsolable tantrums. He began to refuse foods he once ate and sitting down for supper would result in screaming and crying more frequently.

In April of 2024 we were notified that Charlie was accepted into the ABA Little Tots Program, he would begin his therapies in September of that year. What has happened since has been beyond our expectations for our son and we are forever in debt of gratitude. It feels unjust to shortly summarize Charlie’s progress in 8 months, but I will do my best.
•Charlie clings to us for attention and wants to play with us at all times. He shows deep affection, is cuddly and wants to snuggle up with us when going to bed or watching his shows.
•Charlie interacts with our pets and his little brother, often showing them affection. He is especially fond of our one dog and plays fetch with him regularly.
•Charlie verbally asks for help when he needs it instead of hand leading.
•He plays with a variety of toys and puzzles, and he is advanced with his alphabets and numbers. He counts up to 100 and beyond and counts backwards. He knows all his alphabet and is starting to recognize words.
•Charlie has started to wait patiently in lineups. This is unfathomable as public events used to be extremely stressful with his biggest meltdowns happening in lineups.
•Charlie uses lots of words, is able to easily identify objects and is beginning to speak in short sentences. He is able to mand for what he wants whereas prior he would just voice displeasure and he is able to take simple direction for a variety of different tasks. He also is now identifying family members and pets, frequently addressing them by name.
•His motor skills have vastly improved, and he is able to use tools in play and perform simple actions in play.
•He sings songs front to back and does his best with the words. He loves song games.
•He has adapted to clothing like certain coats, hats or pants much easier than before as he was sensitive to particular types of clothing and footwear.
•He is beginning potty training which we didn’t think was a possibility at this age for his challenges.
•Charlie is more accepting to changes in his environment which includes shows, play, and travel.
•Best of all we are starting to feel together as a family and bond with our child.

We still have many challenges ahead for Charlie as he struggles with eating, large gatherings, socializing and managing his emotions, but I don’t know where we would be without this program. I don’t know where we would be financially, emotionally and what abilities our son would have. What felt like a despairing situation has turned into so much hope. We have gained confidence as parents and Charlie has gained confidence as a child. What ABA Little Tots Therapy means to us cannot properly be expressed in words; it has been life changing. For the first time in a long time, we don’t feel nearly as much pressure or stress as parents, we aren’t spending our evenings or spare time looking for help, instead we are enjoying our time with our son. The excitement I see on Charlie’s face when he arrives at Autism Services for Little Tots is amazing. This is each and every day, I have never seen him once protest about being there. He runs into the building, he smiles, he laughs, he looks forward to going. I would be remiss if I did not acknowledge this amazing staff and what they have done for Charlie. They are always smiling and laughing and putting on their best faces for all of the kids. Whatever they are paid, it is not enough, what they do for these children and their families is impossible to pay back yet it is free of charge. We are so
lucky to be a part of this program and have these wonderful people work with our son. All this therapy does is bring out the best in him and give him the best chance of having a great life.
I understand that there is a variance in the public over ABA therapy, but for those who are skeptical I say you need to experience this before a judgement has been cast. We are so lucky to be here, and I feel strongly that every autistic child in need should have these services readily available. No child should be left behind and the hard truth that the majority are makes me extremely sad. I will be an advocate for this program and the autistic community for the rest of my life. I will help in anyway I can, because what this program has done for my family is a debt I can never repay.