Life with an Autistic Son
By: Melanie Braga
Parenthood is this rollercoaster journey that has us constantly learning about ourselves. We learn to embrace and enjoy the beautiful moments and we learn to cope with the challenges that parenthood brings us. Everyone’s experience and journey is as different as every child is. Even in one family with more than one child can differ depending on each child. Even though everyone’s experience is different, we can still learn from each one’s experience and never judge it. We do not know one’s full story, the battle they are fighting, or the experiences they have, unless we take the time to talk.
It is my honour to share with all of you the experience of a truly inspiring woman and mother of two, who has learned to alter her life with an autistic son.
Adele was born and raised in Toronto, Ontario Canada and is the first generation of Portuguese Canadians. Adele has two sons; one is 16 years of age and her younger son is 14 with autism.
So what exactly is Autism Spectrum Disorder (ASD)?
According to Autism Ontario, ASD is a life-long neurological disorder that affects the way a person communicates and relates to the people and world around them. ASD can affect behaviour, social interactions, and one’s ability to communicate verbally. ASD is a spectrum disorder, which means that while all people with ASD will experience certain difficulties, the degree to which each person on the spectrum experiences these challenges will be different.
Onset is early childhood and the presentation changes with development over the life span.
Adele & Aidan’s Story
In 2001, a life changing event occurred within Adele’s immediate family and at the same time Adele noticed changes in her youngest son, Aidan who was only 14 months at the time. The changes she noticed were: he completely stopped talking; he would not respond to his name; had many night terrors; no eye contact and he would get much more frustrated. With these concerns, she took Aidan to the pediatrician and from there they were referred to a developmental pediatrician. After a six month wait to be seen, they were seen by the developmental pediatrician. Many tests and assessments were done. In the meantime, Adele kept track of the changes as the behaviours started to get worse. In 2003, Aidan was diagnosed with Autism by this time he was two years old.
Aidan, received Applied Behaviour Analysis (ABA) through Erinoak Kids Centre for Treatment and Development for only two years as they were on a waiting list for four years (this is government run program). While Aidan was on the wait list, Adele and her husband paid for private ABA therapy on a part-time basis (this was all that they could afford at the time) and Aidan was also enrolled in preschool.
The ABA approach is used to help teach social, motor, and verbal skills as well as behavioural skills. ABA is especially useful in teaching behaviours to children with Autism who may otherwise not “pick up” these behaviours on their own as other children would. This approach can be used by a parent, counselor, or certified behaviour analyst. Aidan was phased out of ABA as their findings were that he was not “progressing” at the rate required by the program.
On top of this, Adele, did a lot of work with Aidan at home and she was able to help him a great deal as she is what I like to call a “Warrior”. Adele did a lot of research to better educate herself on Autism and she came across a community organization called, Community Living Mississauga who provided her with resources and workshops to help her. Once Aidan was discharged from Erinoak Kids Centre for Treatment and Development for ABA therapy and transitioned full time to elementary school, the teachers at his school were amazing and supportive. But of course Adele never gave up and ensured that the hard work at home never ended too.
“This did not change my life but it altered it. This is all I have known.”
This experience has made Adele realize that there is a lot more that she could do. She was no longer shy and became more assertive. This motherhood path that she was on gave her a voice, strength and she became fair but firm. “I never gave up and will always be there for my sons,” Adele stated.
When reflecting on her journey, I asked Adele, what has been the biggest accomplishment for her or her son. Adele responded with such pride in her voice and said, “He is able to use the bathroom on his own at the age of 13.” To some they may not understand the significance in this but as a mom when you hear from experts that your son will be in diapers for the rest of his life, and to have him do this on his own is just an amazing accomplishment!
Parenthood is a tough job to begin with so I asked Adele, what advice she can give to a family who has a child with Autism. Adele stated: “It’s not the end of the world and there is hope! Don’t believe everything you hear. It is hard work and it isn’t easy but it can be done.” She further added, “Your children do grow up and you need to adapt with their growth. Get passed the judgement and develop a thick skin.”
Being a working mom with a busy household however does not stop this woman from helping others. Often she helps and guides other moms of autistic children. She comforts them and is always ready to answer any questions that they may have. On top of it all, she gives back to the organization that has helped her family by organizing and executing an annual fundraiser. In 2015, marked the 10th Annual A Night For Autism and it was a sold out crowd with over 500 in attendance. Money raised from the event supports programs and the summer camps for kids with intellectual disabilities at Community Living Mississauga. Talk about an amazing and inspiring woman!
“You go through so many feelings when you first hear that your child has Autism. You fear the unknown; guilt; denial and then acceptance. It is tough but the rewards are priceless. Never give up!The best moment for me is when you finally hear “mom” when you were told you would never hear it.” Adele lastly adds, “I wouldn’t change him for anything!”
Adele’s journey is inspirational and a great lesson for us to love one another no matter how we may be perceived by others. Someone with autism is just a person with individual needs. A person with loving family members. A person who needs to be accepted and included in her or his community. As this person grows into adulthood they need to be given equal opportunity preparing for and succeeding in adulthood. Autism does not end in childhood and it stays with them for the rest of their lives. Let us be more supportive of them and their amazing families that exemplify pure strength.
I would like to specially thank Adele for sharing her story of hope, courage, and never give up attitude. Thank you for all that you do for your family and for the community!
– Momma Braga