My twin sons invited me into the world of special needs in a heart-to-heart way. Before they became my sons at eighteen months of age, the words "global delay" and "developmental disability" had little meaning.
The first pediatrician who saw my boys said they would never walk, talk, or feed themselves. (Thankfully, Luke and Levi proved this prognosis was wrong by the time they were five years old.) I naively thought if I poured all my love and energy into them, they would catch up to their peers. From first thing in the morning until they went to bed at night I cared for their extensive needs. Along with hugs and kisses, I taught them many things, including how to feed themselves. (It took Luke six months of hand-over-hand feeding before he learned how to scoop his food and put it into his mouth.) I also gave them massage therapy, took them to speech therapy, learned and taught them Sign Language (they didn't talk until they were four years old), and drove them to countless medical appointments. These boys turned me into an advocate—Momma Bear! When they needed something, I researched available services and figured out how the boys could access them.
As they grew older, their differences became more noticeable. The invitations to birthday parties stopped. Their peers often spoke to the adult support workers instead of directly to the boys. In school, they were often pulled out of class and taught by educational assistants instead of their teachers. Luke and Levi did not complain. They laughed and learned and loved.
Luke is passionate about wild animals, especially wolves. He wants to be a wolf biologist. Luke can tell you almost any story from the Bible and wants everyone to follow God. Luke loves being with people. He wants to go to college, get married, and have a family.
Levi can tell you more about almost any vehicle than most guys. One time he was listening in to a conversation with a Ford salesman. When the salesman mentioned a particular vehicle, Levi said, "They don't make that vehicle anymore. They stopped producing them in 1999." The salesman argued, but when he went back to his shop he discovered Levi was correct. Levi wants to live in his own home with his cat.
Many people look at my boys and see how they are different. They are shorter than guys their age. Their voices are soft and they don't enunciate their words clearly. They struggle to express their needs and wants and get frustrated when people don't understand them. Levi doesn't talk much and people assume he doesn't understand what's going on around him...until they say something he disagrees with. Luke talks to and sometimes yells at invisible friends (perhaps making up for the lack of real friends).
According to Statistics Canada, there are over 160, 000 people across Canada who have developmental disabilities. These people struggle to access education, which results in low employment rates and a low standard of living. (The employment rate was only 27% in 2017.) For many years, people with developmental disabilities were forced to live in institutions. (Check out the historical timeline for people with disabilities.) Although the institutions have been closed and most people with developmental disabilities live in their local community, a majority spend their lives in group homes. Sometimes this is their choice, but often individuals and their families are not presented with other options.
I dream of a world where all people are valued and loved. If we all do our part, we can change our world. I invite you to get to know individuals with developmental disabilities. Find out what they are passionate about. Ask them about their dreams. Take time to listen. Celebrate their victories. If you want more information, go to https://inclusioncanada.ca/.
Is there a change you would like to see in our world? Tell me about it in the comments below!
Thank you for introducing us to Luke and Levi. Interesting how professionals can place a diagnosis, however a mom just 'knows' that there is more hope! I have a 28 year-old son with developmental disabilities who now lives in a residential home. We tried hard to have him live on his own, yet it became a very unhealthy environment. I'm not sure how to change that, but there is always hope for a very inclusive society!
ReplyDeleteI would love to hear more of your story sometime Lynn. Yes, there is always hope for a very inclusive society. Big hugs to you!
DeleteThanks Ruth for sharing your sons with us and you being mamma bear. I get that. I have had to do many of those same things and advocate with Amee but only one of her.
ReplyDeleteCarol,
DeleteThanks for your encouragement. You understand because you've walked a similar road. Big hugs to you!
Ruth!!!!! Thank you for this terrific introduction to your 2 wonderful young men. I love that you raised these young men to be independent in every way!!! I already feel as if I know them.
ReplyDeleteYou are truly an inspiration and I am so proud to call you my friend!
Blair,
DeleteThanks for your encouragement! It has been great getting to know you over the past year or so. I so appreciate your compassion and desire to make our world a better place. I too am proud to call you my friend :)
I'm glad for folks like you, Ruth. I was a special needs child who was sent to a residential school. It was horrible but Jesus helped me deal with the pain.
ReplyDeleteBruce,
DeleteI'm so sorry for the terrible things you experienced. You have an important perspective. It's wonderful that you recognize the need for healing and are allowing Jesus to do that for you.
People with disabilities of any kind have more advocates today than ever before, yet there is still a wide gap in services available and people's perceptions. The thing that really strikes me is that God doesn't make mistakes. Each person had value.
ReplyDeleteTracy,
DeleteIt's true...more advocates, and more services, but still a huge gap to fill. God doesn't make mistakes. Each person contributes in a unique way. My sons have taught me many important lessons!
Your story of being a mother bear to your two sons is so good for us all to hear. I can't even imagine the extra energy it took for you to pour so much into their lives but it sure sounds like they have flourished under it. I grew up with a cousin who was affected at birth due to her mother being immunized during pregnancy for rubella (the 60's). I still recall the name calling she received from other children and how it hurt her (and standing up for her). I learned through that, even as a child, about the feelings of others. She far surpassed the doctors prognosis and lives in an independent living center and recently retired after 30 years of work!! She has done wonderful and also has a very dedicated mother. Blessings to you and your family as you continue on your journey together.
ReplyDeleteGloria,
DeleteThanks for sharing the story of your cousin. Sometimes I wonder if people forget that individuals with special needs have feelings. Words hurt a lot. I'm glad that your cousin is doing well.
I appreciate your blessings :)
Ruth, you had me at, "Momma Bear." You remind me of my daughter, Shona. She is on a constant journey of being an advocate for two of her children labelled, "special needs." They are both on the autism spectrum. Whitney is nine and lives with multiple health challenges including Down syndrome and autism. She is on the so-called "low end" of the spectrum. Owen is five and on the "high end" of the spectrum. Owen is brilliant and gifted in a number of areas beyond his years. These days he is teaching himself Russian online. Whitney does not learn in a typical way. A lot of people look at her and see a child who isn't "normal" as they define this irritating term. Those who love her, like me, her Papa, see beyond how she looks and acts. People may not look at Luke, Levi, and Whitney as they would a typical child. Ruth, if you see these children as I do, we see them with their own abilities to teach other people a different perspective of the world and life. My daughter is exhausted most of the time everyday, yet she perseveres in loving and raising her children in a world often blinded by the misconceptions of others. Love and blessings to you, Ruth.
ReplyDeleteAlan,
DeleteI wish more people had your tender heart. Thank you for sharing about your daughter, Shona, and your grandchildren, Owen and Whitney.
I prefer to look at people with disabilities as specially-abled. It does take time and energy, along with other resources, to meet their needs.
I'm glad you are there to support your daughter and love your grandchildren. Having a support team is so important!
Love and blessings to you too, Alan!
Thanks for sharing such a deeply touching story of life as you know it. Luke and Levi are blessed to have you in their lives. They sound like remarkable young men who have so much to offer the world if they were only embraced for who they are.
ReplyDeleteVickie,
DeleteThanks for taking the time to get to know a little bit about Luke and Levi. They are definitely remarkable and I look forward to seeing how they will continue to grow and contribute to our world.
You have been such a dedicated Mama, Ruth, and it shows in the way your boys have progressed! I love how you show pride in each of them and in their individual accomplishments and personalities. I understand a little of what it’s like to be a mom of a special needs child and I especially related to what you said when people would talk to their helpers instead of to the children directly. That always hurt me so much, as if my child wasn’t a real person worth talking to. Thankfully our son Is independent, living and working on his own now. However, I feel like advocacy never stops. We never stop being moms I guess. Anyways, thank you for introducing me to your twin sons. They are precious and beautiful!
ReplyDeletePam,
DeleteThanks for sharing a bit of your experience. Yes, it hurts when people ignore or even avoid our loved ones who have labels. Imagine what it does to them :( They are people who have similar desires, dreams, and abilities to others.
Congratulations to you and your son for the work you both have done to enable him to live independently and also work. You're correct...advocacy never stops.
My heart goes out to you and your boys, Ruth. You are definitely a Mama Bear for your children. Luke and Levi have been blessed to have you as their mother, teacher, mentor, friend, advocate. I could go on. . . That is such a neat story about Levi telling the Ford salesman, "They don't make that vehicle anymore. They stopped producing them in 1999.” It can be amazing how the developmentally delay can be differently abled. Luke’s expression of his dreams for the future are so normal and understanding. I hope he is able to live out some/most of his longings.
ReplyDeleteI read the historical timeline and it is shocking. Your story got me thinking, again, of my Aunt Margaret, my dad’s sister who was lovingly called Greta. She was born in 1914 and she was one of the older ones in my dad’s family. Greta was developmentally delayed. The story is that she, as a toddler, had taken a tumble down the stairs and she wasn’t the same afterward.
Greta was never institutionalized, which, I believe, was a rarity for the times. Margaret stayed and worked at home with Grandpa and Grandma. She did outside chores and helped Grandma in the kitchen. Having family come home for visits was exciting for her. She lived a sheltered, but happy life. My Aunt Ruth had promised Ma and Pa that she'd look after Greta after they died. That Ruth did with sacrificial determination. Margaret lived to age 99. Ruth developed Alzheimer’s.
Thanks for sharing your story, Ruth, and for your Christian, motherly, and humanitarian love. Through your love and advocacy, you are making the world a better place for all of us.
Sharon,
DeleteThank you for your compassion and listening ear. You have been a blessing to me in many ways.
Thanks for sharing the story of your Aunt Margaret. It sounds like she had a good life—much better than others who lived with developmental disabilities during that era. Yes, the historical timeline is shocking!
We truly need each other. I'm so grateful for the body of Christ and the way we can rely on others when we are weak and struggling. Together we can continue to make the world a better place.