(This article is part of a series, “A Mother’s Journey” – a collection of stories in honour of all mothers, and those who are a mother at heart and spirit. I hope this would inspire and help other parents in some ways.)
It’s very rare to encounter a person whom you can tell right away that she has lots of gems to share. When I met Hazel (not her real name) I knew right away that as a mom, she has treasures of gems to share in parenting, life, and as a strong woman. My assumption was confirmed by a short conversation with her, as soon as I found out that she has seven children and three of them have Autism Spectrum Disorder (ASD).
In amazement, my question to her right away was, “how do you cope?” I mean motherhood or parenting one child who has no disorder is already a challenge, what more three children with ASD?! And she has 7 children. Wow!
Do you guys get me?!
My brain right away leaned towards sharing this woman’s experience to the world for us to learn and maybe get inspired, hopefully.
It was amazing watching her that day, managing our group of children calmly. As a person, she has this outstanding and strong personality as if screaming, “I got this!” or “Don’t get in my way, or else…” or “Don’t mess with me…” kind of attitude. Well, that was my impression.
I was a little bit intimidated by her, but I threw it anyway, “hey, can I interview you for my blog?!” Then I went on explaining about the series “A Mother’s Journey.”
So she agreed, on the condition of anonymity due to some personal reasons.
There’s nothing heartbreaking to a mother than being told by the doctor to “go home and find a home for your son” implying for her to send her child to an institution because this child will not learn to do the things a normal human being would. He won’t be able to see, hear or walk.
Hazel says, “The first diagnosis was devastating and empowering. I was told to find an institution for our son who would never walk, talk dress himself or be able to do any self-care. I decided at that time, not my son, no way!”
The first diagnosis of her son was in 2002, back then the availability of Internet resources was not as rich as it is now. The accessibility was not as abundant.
A mother who is now fighting for her son, wanting to make a difference in his life and prove the doctor wrong, pulled a Yellow Page, a telephone directory, and start looking at letter “A” for autism resources.
“After I had my cry, I went through the yellow pages and called A-Z any agency that I thought could help me in any way. I called them and said, ‘my son was diagnosed with autism and I need help,” Hazel’s helpless plead yet adamant to find help for her son.
Prior to her son’s diagnosis, Hazel’s awareness of ASD was through a non-verbal child in public school. “Since there was little information on ASD at that time it was not a great introduction,” says Hazel.
Besides the boy with ASD, Hazel during her teenage years also had an interaction with a mom who had a child with down syndrome.
“This mom was instrumental in how I responded. They never allowed their child to be treated differently than the other children they had. The child had the same expectations and all the same experiences. They did not allow their child to be their diagnosis,” adds Hazel.
The succeeding diagnosis, it seems Hazel mastered the way to ASD diagnosis and treatment.
“I just walked into the Doctor’s clinic with a DSM 4 (a diagnostic classification) and walked out with a diagnosis. With number 3 we had to go through a longer rig-amoral to get a diagnosis. With both it was here we go again. I knew what I did with number 1 so I called the same people again and again. It wasn’t a big deal,” says the confident mom.
Despite having children with ASD, Hazel looks at the positive effects of it on her than count the difficulties she went through. Her role as a mother weighs heavily on her than anyone else, she became the expert of her children’s condition.
“Having children with a disability has helped shape me into the fighter I am. My children have no other advocate than me. My mindset is just because a person has a piece of paper doesn’t do me a thing, they don’t know my son or daughter to them they are just a number. The therapist can only give my child an hour or 2 a week. I have many hours a week to devote to my child. I learned everything I could about ASD and about any therapies that can help. I became an expert on my children and on how I can help them,” narrates Hazel.
She continues, “By having these children with disability, realize that your life will no longer look like anyone else’s, ever. There are times that this is more difficult to stomach than others, but keep reminding yourself, life is a marathon, not a sprint. Your child will get there just not in everyone else’s timeline.”
“My children have no greater advocate than me, no one will fight longer or harder for them. My children need to know that no matter what, Mom is cheering the longest and loudest for them, even when they come in last,” Hazel adds.
In moulding her children’s spirit and confidence to be the best individual they can be, Hazel focuses on her children’s accomplishments based on what they can do according to their standards and not anyone else’s standard.
“They are told half the battle is showing up,” shares Hazel. “We celebrate showing up not the outcome. We went out for dinner when my daughter booked her G2, the outcome was not up to her. We celebrated the achievement, not the outcome. We celebrate trying out for the school play or team, not whether or not they made the team. They had the courage to show up, that is worth celebrating and celebrating loudly. With little ones we celebrated when we screamed 999 times in a day than 1000 when our son made any sound we celebrated not knowing if he would ever talk again.”
Hazel emphasizes her children’s welfare and happiness than other’s expectations. They come first more than what other people think about them.
“We don’t sweat small things, burping at the table, things that other parents worry about. It is huge in their world, but it is no minor in my world. We let go of other people’s expectations. We have shown up in our PJ’s, with no shoes, or on shorts in winter (I had pants with me but the child sensory issues wouldn’t allow them to wear pants that day). People will shame and belittle you, but they have never walked a day in your shoes and they don’t come home with you to help so they do not get an opinion that matters,” Hazel shares confidently.
Hazel admitted that her life is not as smooth as it seems. She herself lives with ADHD, likely on a spectrum and battles depression.
“I don’t balance well at all. I live in extremes. I have been in survival mode for a long time at different times in my life. I used all sorts of unconventional ways to cope,” admits Hazel.
“I have to keep going, I have no option. There are days where it is what’s the next fire? Okay I did that what’s the next fire. There are days where you wake up and you why am I alive again? I have days where I have spent days crying. But those are days, not my life and not a lifetime,” counts Hazel. “I give myself the freedom to have a bad day, a bad moment, but then I need to keep going. Sometimes it is like moving with concrete feet and every step is a struggle and other days I’m just soaring.”
Nevertheless, Hazel assures, “Things that never change is my love and devotion to my children and my fight for them.”
To parents, she advises to “Focus on the relationship, it is the most important thing and is not build overnight but can be destroyed so easily. Apologize to your child when you mess up and I mess up a lot.” She adds, “How your child is at 3 they will be at 13. Teens are just toddlers with 10 years of experience. You still don’t know anything, they don’t want to go to sleep or get up, they don’t want to clean up after themselves, they are still picky eaters but eat enormous amounts of food.”
Importantly Hazel says, is for any mother to finds ways to cope with her life situation. She shares some of the coping techniques she took when her children were younger. She says she has to do what she got to do. “When my kids were little, I swept the floor a lot, and said tomorrow they are 1 day older,” this is how Hazel consoles herself.
“I need to remind myself to carve time out for me. My 5-minute coffee, walking around the house, laying in the hammock listening to them run around the yard or fight as most kids do,” says Hazel.
“I used gym membership and gym daycare to grab a nap and a shower in quiet. I spent afternoons at the library or the Early On Centres to change our scenery. I signed up for every class that offered child minding, even if I took it before to get a breather. I went to any mom’s group I could find to connect with other mothers. We walked a lot and explored a lot of parks,” narrates Hazel.
“When we go somewhere we always prep our kids to know what is expected of them. For example, when we get out of the van, ‘I want you to touch the side of the van till I come around, so no one gets hurt or hit by a car as the car drivers are not looking for you.’ We trained our kids to sit near street corners when they were little on the grass till I caught up so I knew they wouldn’t run in traffic. We did have a time with somewhere we used the animal backpack for the child’s safety. If we were going grocery shopping it would be ‘you will stay with mom, we are only getting what is on mom’s list, we will get a treat afterwards, I need quiet voices inside and your body parts will not touch anyone else’s body parts’ (instead of hitting, they would body check each other and say see I didn’t hit them),” says Hazel of the methods she used with the children when they were younger.
She adds, “Eventually, after a major crisis, I was forced to look after me, so I started training for half marathons. Walking gave me a clear head so I could cope. (The kids were little, I was a huge volunteer I ran Canada day for our community, I was a provincial youth chair for a charity, I was on several boards municipally and heavily involved in our church).”
“Now, I still struggle to find balance. My kids are grown and now I try to figure out what comes next, what do I want to do now. Balance for me is elusive, like capturing a unicorn,” says Hazel.
Meanwhile, brightening up other people’s day is something that Hazel finds pleasure in especially on her gloomy days.
“I am not a first prize mom but I’m okay with that, I have daily struggles to keep going but I keep going. I look for others who are struggling and try to make their day brighter. When life seems darkest I need to get the focus off me and onto others. I’ll write an encouraging note to a friend, or call someone to brighten their day. I’ll smile at the stranger in line at the grocery store or hold the door when I’m out. I may struggle internally but I am feeling better by making someone else’s day. I focus on gratitude and try to cultivate thankfulness,” counts Hazel.
As a mother for the past 20 years that commenced with the challenge of having a firstborn with ASD Hazel learned that, “Mom is the emotional barometer of the home, our attitude is contagious, I need to remind myself by asking ‘is my attitude worth catching’?”
She adds, “I have the best kids in the entire world. Every child has a gift, it takes time to figure out what that is, and success looks different for everyone. Never give up on yourself or your child. Have standards, each child can meet your standard, but be sure they are achievable.”
Importantly she reminds parents to “Tuck your children in at night and always kiss them goodnight, even when they are teens, they need to know the stability that you love them even when they feel unlovable.”
Hazel instill in her children the importance of vision and purpose as well as protecting the family.
“Give your child a vision and a purpose, give them a goal that is just theirs. Train your children to help out around the house, you are a team, cultivate team mentality. We told our kids this was our castle, we defended each other it was who we were as a family,” shares Hazel.