Different and Okay
DIFFERENT AND OKAY
Nine Ways To Help Your Special Needs Child Thrive
"Six years ago my world was shattered. Our 10-year-old daughter had been diagnosed with cancer and nothing would ever be the same. What followed was a year of brutal treatment, but she survived.
Unthinkably, part of the cure was the loss of her right leg. Though those dark days of grief felt like the death of our old life, they also birthed our family’s awareness to the community of kids with special needs. Because our new normal consists of spending time with pediatric cancer families, parenting an amputee, getting involved with adaptive sports, and most recently, adopting a special needs child from China, we are learning much about raising non-typical kids. It is a tremendous blessing. And the most unanticipated thing about this amazing community, of which several of our own kids are now a part, is that most are living happy, fulfilled lives. I’ve observed numerous families in my attempt to determine why.
How do we parent these kids not to simply survive, but to thrive? How do you raise children who are okay being different? While every situation is unique and “success” depends on the abilities of each particular child, I have noticed some consistencies in parents who seem to do it well…
Let go of parental loss, grief and guilt.
Whether a child is born with a disability or it occurs later in life, it will probably destroy parental expectations of what could have been. Oftentimes parental guilt and grief are all-consuming. This is completely normal. However, many parents remain stuck and unable to move forward. We have to learn to clearly separate our sense of loss from our children’s lives. They have enough pain and struggle of their own without having to carry the sorrow of their parents as well. It may be necessary to deal with some of your feelings privately or through counseling. It’s important for kids to witness authentic emotion, and certainly sadness and anger are part of life, and our children must see us being real. But we must be strong and healthy enough to avoid loading our baggage onto them as well.
Do not treat them too differently.
Yes adaptations and exceptions will need to be made, but as often as possible, let them be like any other child you would parent. There should be chores, rules, discipline, high expectations, and all things that establish a routine and normalcy.
Point them to a bigger purpose.
In our family, this purpose is our faith. Jesus suffered greatly, and here on this earth, we will too. This understanding can bring tremendous hope and peace. There is also comfort in realizing that something greater may come from the hardships and that one day the pain will cease to exist. “Three times I pleaded with the Lord about this, that it should leave me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore, I will boast all the more gladly of my weaknesses, insults, hardships, persecutions and calamities. For when I am weak, then I am strong.” (2 Corinthians 12:8-10) Whether you are religious or not, the next step in discovering a bigger purpose is to help your child find a way to mentor, encourage, or serve others–to minister–to those who are going through a difficult time. Suffering is a universal language, and it is cathartic to use the hard parts of your story to help someone else who may be struggling.
Prepare their community when possible.
While it’s impossible to educate every person with whom your child will interact, it is helpful to inform the people who will have close, daily contact with your child. Educating the immediate community around them will limit the number of questions a child must field and can make their daily lives a bit less emotionally draining and repetitive. Also teach your child how to answer people’s questions (and how to assert the right not to answer) because questions are inevitable.
Be proactive and anticipatory.
While it’s not healthy to completely pave the way for a child, remember that non-typical kids will face significantly more battles than typical children. Teachers and friends will not always consider the issues that may arise. For example, if there is a school trip with a lot of walking and you have a child that struggles with this, don’t assume someone else will think of it. Ask questions and come up with a plan ahead of time. Be discerning though. There are some hard things a child needs to work through on his own, and other circumstances that will simply break his spirit. A wise parent can tip-toe between intervening when necessary, but not too much.
Find a community where they aren’t so different.
Whether it’s adaptive sports for a child with spina bifida or summer camp for a Type I diabetic, kids need to have a place to go where they feel “normal” and like their peers. Think of it as filling up their gas tank where a little bit can go a long way.
Prepare them ahead of time for bullying and how to handle it.
Kids will be mean and adults will stare. Give your child some coping strategies and explanations as to why. Most people don’t stare to be rude, but because they are curious. It doesn’t make it more acceptable, but sometimes a little warning and practice allows a child to be better emotionally prepared.
Don’t forget to laugh!
This is a pivotal piece for our family and I’m sure others would be appalled by some of the things we find humorous. But really, there is laughter and irony in so many situations and if you can see some of the humor, it does lighten the load¬–at least for a moment. The caveat is that it’s imperative not to cross the line drawn by the child. She has the sole power to decide if something is funny. For wonderful examples of comedy (and of triumph) even when life is more difficult, you may want to follow @shaneburcaw or @joshsundquist on social media.
Be intentional and aware of your responses as a parent.
Kids are wise and they are watching. The difference in whether they thrive or become a victim may be determined by our responses to life events. There is a delicate balance to strike between validating their emotions and pushing them forward. We need to acknowledge their pain and sorrow, but we cannot allow them to stay there. It is awful to watch your children hurt, and it will take a sizable emotional toll on you as a parent. But they are going to need resilience for their journey, so it is important to model that well.
We live in a world where “typical” is ideal and anything different is “less than,” so it isn’t going to be easy. This tension of wanting others to see your child as you do can be devastating for a parent. But we must remember that these kids are made in God’s image for a specific purpose and He will equip them. There is hope.
Jim Sinclair, an author, advocate, and an adult living with a disability, says it best,
“…we need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.”
Our job as parents is to be a safe and encouraging place where our children can learn, grow, and be even more than okay. Our job is to help these amazing, joyful, resilient kids to thrive!
Tiffany Moody and her husband, Patrick, live in Johns Creek, GA and are parents to five children (three biological, two adopted internationally, all planned by God). She champions adoption, loathes childhood cancer, and allocates much of her day toward researching, advocating for, and treating the numerous special medical needs of her kids. Her imaginary free time is spent exercising, writing, coaching young athletes, reading, and taking naps.