It is 2022. International Women’s Day 2022 theme is to ‘Imagine a gender-equal world. A world free of bias, stereotypes, and discrimination. A world that’s diverse, equitable, and inclusive. A world where difference is valued and celebrated. Together we can forge women’s equality. Collectively we can all #BreakTheBias.’

I strongly encourage you to celebrate women’s achievements, raise awareness against bias and take action for equality.

Some children and youth may need extra support because they have challenges or delays in their physical, intellectual, emotional, social, language or behavioral development. Arun Sawhney shares his journey of raising a special needs daughter.

Arun please tell my global audience a little about you?

I will be completing 25 years of marriage this year to my beautiful wife, Simi. I have three wonderful children, Nonie, Rijuta, and Aditya. I have a passion for real estate and run the most modern gas station in Himachal Pradesh. 

Talk to me about the challenges you have faced in terms of care for Nonie?

Nonie was born in February 1996. She was suspected to be a Down’s Syndrome child which was confirmed later in tests.

Unfortunately, there were/are no special schools or staff to deal with Nonie’s condition at Kandaghat.  Chandigarh’s Post-Graduate Institute of Medical Education & Research (PGI) provided support. There was a dedicated group of doctors with their team of postgraduate medical students conducting a genetic clinic every Monday at the Advanced Pediatrics Centre (APC). We had been referred to have the karyotyping test for which they alone had the facility in the region. Down’s is named after the doctor Dr. John Langdon Down who discovered this condition. In medical terms, it’s called Trisomy 21, an extra gene resulting in the condition.  A lot of measurements were taken every time, we visited the clinic. The senior doctors would guide us on her upbringing. Speech therapy was conducted. I remember Prof. Bhalla, a very soft-spoken person who would ask us to teach her initially 3 words that Nonie had to say when we visited after 3 months. Nonie can read, write and speak pretty well. Her speech is slurry at times. Nonie completed her grade 8 from a normal school with the methodology provided by PGI. Nonie intends on completing her grade 10 from the National Open School. She will be 23 in February. 

How has the culture changed around having a kid with special needs?

Having worked with various organizations on a national level, I can say authoritatively that attitude towards special kids is undergoing a major change.  Government attitude and policy have been highly supportive, especially in the past few years.

I am a big fan of providing pensions to special needs children, with no conditions attached. Special needs children are divided on the basis of physical and mental disabilities. It’s easy to assess and determine the level of disability for physically challenged people who may perform say to 75% or 50% of their capacity but an intellectually challenged person cannot perform any work even if his disability is gauged at 25%. Government policy mandates a 75% disability to be eligible for a pension. This excludes the entire intellectually challenged (ID) population from this crucial benefit. Nonie’s problem is genetic but I’ve observed most ID people come from poor backgrounds and their causative condition is due to malnutrition and improper care during pregnancy. 

What have you learned from your daughter and how has she changed you?

Nonie is the sunshine in our lives, with an extra chromosome, that I call God’s chromosome. You and I don’t have it. The chromosome makes her closer to God. She is the most positive person in the family and a great PR person. She has achieved glory at the Special Olympics She works as the Manager at the convenience store at our Gas Station. She manages the staff. She is very particular about expiry dates and is methodical. While we are traveling, she’s in touch with the staff, observing them on cams and checking on how the sales are progressing. She must have the day-end figures.

Nonie has taught us how to be sensitive to all human beings and how to remain happy despite so many limitations. She encourages, settles arguments, and has a great sense of humor. Nonie has changed us in many ways. We stand up for other special persons whenever we encounter an issue. She bonds the family together.

I am involved more in social work, because of her. We care, but we want society to care for the special persons around them. This is what we have taught to her siblings. They are sensitive to special people. We never hide Nonie. Nonie regularly visits Rijuta’s and Aditya’s schools.  Aditya was initially reluctant when we wanted Nonie to visit his school. But to his surprise, our superstar’s charm raised his esteem. To sum it up she has taught us the value of unconditional love. 

What advice do you have for parents around the world who have kids with special needs?

My advice is never ashamed of having that child. Bring the kid out to social and family gatherings. Shower them with genuine love. When you unconditionally love your child, so will the extended family and then society. If you shun your child then it will have a cascading effect. Be fiercely protective of your child and face off with anyone who makes fun or is abusive. Being in a small town in a bigger family helped us, but never leave your child alone. They could be vulnerable to predators. This feedback I have got from parents living in bigger cities.

Remember you may not always be around. Ensure your child gets some skills to be employed gainfully. Make sure the siblings are sensitive to these issues, so they can take care. The first support system is the family. Parents should never feel burdened by a special child. Make their well-being one of your primary goals. Try to stay cohesive as a family. Broken families are not good for a special kid.

Talk to me about your social cause?

I’ve always involved myself in social work. Now I’m focused on our own venture, The Nonie Sawhney Foundation wherein we plan to fill in the gaps for children in schools in Himachal in terms of educating them on hygiene and providing clean drinking water. The big thing will be a counseling center for special children and their parents.

The post A Special Gift With Special Needs appeared first on Four Columns of a Balanced Life.

Sherron Grant is a principal at Derrydown Public School. Clovis Grant is the CEO of 360 Kids, an organization committed to ending youth homelessness. Their son Isiah was diagnosed with autism at the age of four. In every support group that Sherron attended, she realized she was the only black mother. She felt lonely. In 2020 she started a support group for black families whose children have disabilities. I ask Sherron about her experiences and life as a mother.

Sherron, thanks for being willing to be on my blog. Tell my global audience a little about you?

I was born in London, England and immigrated to Canada, as a toddler, with my Jamaican born parents and baby brother.

I am currently an Elementary School Principal in my first year, and a married mother of 2 boys, a wonderful and supportive daughter-in-law and a brand-new grandson! My passions are student achievement, from marginalized backgrounds and support for the intellectually disabled community, especially as they become adults. 

Parenting a child with special needs, walk me through these challenges?

Wow! Where do I begin?

My baby boy was diagnosed at the age of 4 years old, late by some standards, with PDD-NOS, Pervasive Developmental Disorder – Not Otherwise Specified. Later, it was adjusted and confirmed to be ASD or Autism Spectrum Disorder. Our son is 22 years old now, so we have gone through the journey of elementary school, high school, special needs intensive support programs and now adulthood.  Although there are some written and human resources available, Toronto being farther ahead than many places, even here within Ontario, there is still much out there that is unwritten, that still needs to be figured out. There are supports out there, but much remains concealed. If you don’t ask, you won’t know. Information is not necessarily made readily available for families.

But my difficulty with that is that like the saying goes, “You don’t know what you don’t know.”  “How does one obtain initial funding?” “How does one receive additional funding?”  “What do you do while your child is on a waitlist for supports?”  “How do I navigate all of these circumstances while both myself and spouse or significant other work full-time demanding jobs?”

Sometimes I have felt and continue to feel that I don’t have much of a life outside of the world of Autism. When your child gets diagnosed, many of us begin to study out Autism.  You attend workshops and conferences, join parent support groups, send your typically developing children to “sibling” support groups and send your husband to groups for dads because it’s moms that are usually at the helm of this big ship. At times, I ask myself how to develop a separate identity given the demands of parenting a child on the spectrum. Other factors include the reality that:

• Behaviour and needs tend to get more challenging as the child ages;
• There tend to be more services for younger kids;
• Caregivers always need to “be on”, especially when in the community. There can be a risk of him being unsafe with himself or others, and the risk of others’ reaction;
• The reality of never being an empty nester;
• The ongoing financial challenges of paying for therapy to improve his future outcomes;
• And dealing with regret because you do not have the kind of money that others have to pay for all the services that the “experts” tell you that your loved one needs to be successful.

Sometimes in life, there are things that we cannot change, it ends up changing us. How has your life changed?

Raising a child with Autism has not only changed my life but changed who I am as a person.  I feel that I have a better perspective on life and what is important in life.  I don’t get caught up in the little things like a bad driver, inclement weather, or a disagreement with a friend or loved one. There are bigger things in life to worry about and lose sleepover.  Isaiah has helped all of us, including his father, older brother and other extended family and friends to see that.  He struggles every day to navigate the social world, to hold a conversation, to follow so many of the unwritten rules in life that us “typically developing” folks take for granted.  Understanding his sensory challenges, being misunderstood, and the fast pace of the world around him, sometimes I don’t blame him for screaming and wanting to shut himself away from the world. Some days it’s too hard for me! But we encourage him to fight on, and fight on he does.  We have learned to celebrate the big and neurotypical victories, like when his big brother received a permanent position at work after over a year of being on contract. But we also have learned to celebrate the small victories as well, like when Isaiah can sit patiently and wait while mom stops to enjoy fellowship at church. 10 years ago, that wasn’t even an option! Today it’s our new normal. Raising him has made me a better mom, wife, educator and human being.  Although I will not say that I wouldn’t change the autism in him if I had a chance because I would at the drop of a dime! But at the same time, in learning to embrace this normality in our lives, I appreciate how these struggles and challenges have made me better, stronger and more content.

Children with special needs are not sent to special parents, they make parents special and unique. Talk to me about your own personal journey and how you are thriving?

To continue from my previous statements, I do agree with your question here and I used to be offended when people would say that to me but over the years, I have learned that people sometimes will say just about anything when they really don’t know what to say.  One thing, of many, that I appreciate about my husband is his deep faith and inner strength.  When Isaiah was younger, I felt like giving up many, many times. I often felt like Autism was a life sentence. Sometimes I still do. But when he was younger, Clovis declared that we would not allow autism to be a life sentence for Isaiah or anyone else in our family and we would learn to live with it and give Isaiah the best life and opportunities that we could afford.  We used all of our savings and whatever grants that I could tap into to provide interventions that our child needed including speech therapy, occupational therapy, play-based therapy, ABA and IBI, playgroups, social skills, joining a gym and so on.  We lived in our car it seemed.  I wasn’t working full-time then so I had the time to research and figure out what was best.  Along the way, I met many wonderful parents, many with whom I still keep in contact, and we continue to support each other along this precarious journey. As I got Isaiah the supports that he needed, and he seemed to be thriving in the right school placement. Our oldest son was also doing well in life.  Now it was time for mom to find her path. While on that journey, and seeking counsel from trusted friends, I ended up in education in 2005 and today I am an elementary school Principal. There has been a lot of juggling along the way, but it has all been worth it and I believe that God has raised me up for such a time as this.  I refused to put career first and would never have jumped into this demanding role if I did not have the support of and “green light” from my family behind me. Everything happens in its own time.

Help me understand the discrimination in our society towards special needs children, education, care, and how can we make it an inclusive society?

People are scared of what they don’t know. They feel uncomfortable around situations that they are not fully in control of. I feel that way about how society treats those with a disability, especially those with a ‘hidden’ disability.  What I mean by this is, I see that people will be much more willing to forgive the person walking with a cane or seeing eye dog, someone in a wheelchair or an amputee. Basically, someone who LOOKS disabled.  My son does not.  Looking from a distance, he looks perfectly fine, tall, handsome (I must say), confident… until you try to hold a conversation with him.  But if you don’t, then there are certain expectations that society has of all of its citizens, and if that member can’t produce, they become an outcast, an untouchable, forgotten.  This has been a historical practice in first-world nations such as Canada that has only begun to change in the 1970s by parent groups.  As a result of their advocacy, institutions have been shut down, sheltered workshops dismantled and the school system is working towards a practice of inclusion.  These are all great steps in the right direction, but the deeper work comes in trying to change the hearts of the greater society who were raised to believe that those with a disability are nothing but a burden to be locked away and forgotten.  They need and deserve the support necessary so that they can work and not merely live off of government assistance. They can live on their own or with roommates, attend post-secondary institutions, and receive the supports they need to be successful. In order to achieve these goals, the government needs to make it a priority by acknowledging, by way of funding and legislation, that ALL of us are valued citizens and that if given the chance and proper supports, we can all succeed from one degree or another.

How can we be more sensitive to parents with special needs children?

Educate yourselves. Yes, I hate the looks and stares when my son melts down and although he is 6 feet tall, can sometimes act like a 5-year-old. But more than just telling people to mind their own business or stop staring, I want people to care enough to watch the documentaries, read the articles, ask questions as to how they can help.  There are not many people out there anymore who are not touched by disability. Their own child, nephew or niece, neighbor, colleagues’ child or significant other.  Rather than “Ahh, sorry to hear” how about “Tell me more.” “Where can I learn more?” Are there opportunities to volunteer or to give back in some way?” It does take a village to raise a child” and unfortunately, with a child with special needs, they grow up to become adults with special needs so that village’s support will be called on for a bit longer than the norm. Just try to help even in the slightest way. Sometimes just knowing that there are willing people out there can help relieve the stress, loneliness and isolation we “exceptional parents” can feel oftentimes. 

What advice would you give to parents with special needs children?

Never give up the fight! Our children are counting on it.  Their survival, their ability to thrive and not merely survive depends on it.  You will stumble and you will fall but always, always get back up and keep on doing what you need to do.  I often talk about the 5Fs, when I used to do panel discussions at Seneca College for their Special Education programming students.

Family: Keep it strong. Make memories. Remember your typically developing child(ren) as well. Don’t neglect them or you may endure bitterness from them later on in life and they may not be willing to support your disabled child when you can’t.

Fun: Make time for it with your significant other, siblings, friends, or just yourself. Laughter is good medicine and fairly inexpensive .

Faith:  My faith in God has been tested over the years, but it remains steadfast. I could not imagine sticking it out this long and being successful in marriage, in career, in child-rearing, in my own personal journey without it.

Friends: Sometimes hard to keep considering our schedule is often not as flexible as those of our friends who eventually become empty nesters long before us and tend to have much more free time and money on their hands. But find one or two friends that you can go to, rely on, who ‘get’ you and your situation. Some of them may have an exceptional child/family member themselves, some may not but just may be intuitive enough to provide you what you need. Pick up the phone, send a text, don’t completely cut yourself off even in your darkest times. This is a VERY hard road to go alone.

Fitness: Take care of yourself. Be mindful of your input and output. Exercise, rest, pray, meditate. Our loved ones need us to be as physically, mentally and spiritually strong for them as we can for as long as we can. Even if you fall off the wagon, as I have since taking on this new position, be determined to jump right back on as soon as able. Life is a marathon, not a sprint. As long as you’re living and breathing, there is time to turn things around.

Oscar Wilde said ‘What seems to us as bitter trials are often blessings in disguise’. Do you relate to this or was it a figment of his imagination?

Although I hate to admit it, yes even in the midst of one’s darkest hour, there can be a silver lining if one looks hard enough and is willing to embrace it.  I do believe that raising Isaiah has made me stronger not only for him but for many others that I didn’t know would need my strength and for myself not realizing that I had that kind of strength and wisdom in me. I have counseled colleagues, parents and even strangers and give them hope when they had none. The sense of calm that I have when everything around demands anything but, I believe has given others hope and encouragement and confidence that I understand their situation and that they can trust my counsel and leadership and that everything will be ok. We believe we became better parents to our other child because we learned to take nothing for granted in parenting or in life. My husband and I often question how different life would have been if Isaiah did not have autism. How different would WE have been as parents, employees, supervisors, friends, Christians, if we did not have to deal with autism. I guess we’ll never know.

Talk to me about your faith, the journey, but also the practical aspects of your faith in dealing with a mother of special needs children?

I have been a Christian since my graduating year of university in 1989.  I wrestled to come to faith and vowed never to turn back and I haven’t … although it has been tempting at times.  Then my child was diagnosed, I read up on it and read the prognosis for his future and I was devastated.  For about 6 months, I didn’t know if I was coming or going. You see, when many of our children are diagnosed, we get the label from the presiding medical professional, a few phone numbers of agencies to contact and then basically told to “Go in peace; keep warm and well fed…” You are basically on your own. If I didn’t have the circle of support that I had at the time, I don’t know what I would have done but as I mentioned earlier, after a time of licking my wounds, it was time to get up and get cracking. My son desperately needed his mother. Actually, both of my boys did, in different capacities and I was ready to deliver. My husband was a little slower to jump on board in the beginning, grieving in his own way, but someone had to take charge and get things started so I decided to be that person.  Once Clovis got on board, there was no looking back and we became a dynamic duo filling in the gaps where the other was weaker. I looked up scriptures to understand why my son was born that way. Did I sin? Did my husband? Was its residual “payback” from someone else’s sin.  I just read and prayed and read and prayed and over time I began to hold on to John 9 where Christ reminds those in his hearing that: “Neither this man nor his parents sinned, but that the works of God should be revealed in him.” This has been my ‘go-to’ passage for the last 18 years and will continue to be coupled with a few others. Basically, it is what it is and if I allow him, God will work in all our lives to bring Him glory out of this perceived injustice. And so far, I must say, life has been good.  Not without its trials, tears, cries up to the heavens and even a little fist-shaking, but in the end, I know that God loves me, and even more important, God loves Isaiah and he has and will continue to watch over him, even when I can’t.

I am sure there are a few things you want to change in terms of laws, access to health care, food, accommodation, and other things. If you were talking to your MP or the PM what would these be?

Since I am in the season of raising an adult with a disability, then this is now where my fight is. I did my share when he was young.  When these wonderful and ambitious young people leave high school, unless they are able to navigate the traditional career pathways or college, university a trade or straight to the world of independent work, they are left behind to sit in their parents’ basement to languish away from the eyes of modern society.  Different families have different abilities and not all are necessarily equipped to advocate for their loved one the way they need to.  The system knows who these young people are because they have been in the system since childhood. Unfortunately, it seems that funding for Services often favor those with extremely higher needs than the average and also funding and supports during times of crisis. Our governing body needs to be more proactive in providing a full life of opportunities to these marginalized members of the greater society.  Many do not want handouts. They don’t wish to sit around living off of a government stipend. They want to be out. They want to work and earn their own cash so that they can enjoy what their neurotypical peers and family members enjoy: a movie, a night out at dinner, a vacation, membership at a fitness facility. Not only write parents a cheque but provide the programming, provide the training for competent support staff at an attractive salary so that we parents and guardians have somewhere to spend the money.  Think out of the box and let’s continue to move away from the archaic ways of doing things that only further marginalize and let’s not just talk about inclusion in policy papers, but put our money and decisions where our mouth and pen are.

The post Clovis & Sherron Grant’s Isaiah appeared first on Four Columns of a Balanced Life.