When Delainie was in the Children’s Hospital of DC, we stayed for 8 weeks at the Ronald McDonald House. What a WONDERFUL place.
I remember thinking, “uh, no, I’m not staying there, I’ll stay right by her crib in this hospital room, thank you”.
However, Steve visited it and said it was, “brand new looking and really nice, kinda like a hotel”. Craving sleep and a shower I acquiesced. To my surprise, it was amazing. The perfect respite from the hospital.
We met so many wonderful families there, all going through their own struggles with their child’s health and/or development. It was like being with family at the end of a hospital day, but this family totally understood what you were going through.
When you have a child in the hospital the last thing you wish is that someone had the experience to understand, but the one thing you wish is that someone understood. It’s a hard thing.
Some of the parents we met were seasoned veterans with having medically complex and developmentally delayed children. Those folks imparted a considerable amount of wisdom to us that we are just now beginning to understand.
One of the recent things we have come to understand is the importance of teaching, Delainie, and those kids around her the value of self-worth.
Delainie is different. She has a rare genetic anomaly. It has caused her medical issues and developmental issues. She is deaf, has low muscle tone, has seizures, feeding issues, and several other medical complications. All that said, she is a gorgeous little angel, with blue eyes and pretty blond hair and a smile and giggle that melts hearts. She is a willful little girl and that makes me smile, because there was a time when doctors told us there wasn’t hope for her life much less her mental development. They were wrong.
People seem to notice that she is different, though I don’t exactly know why. Upon seeing this, I began to realize that we will need to teach and reinforce some very important lessons to our little girl. People will not always understand and respect her differences, but that does not make her any less, it makes them less.
You see, special needs kids are just that, they have special needs.
They are no better or worse than other kids, just different.
They are not loved more or less than other kids, just loved differently.
They are not taught more or less than other kids, just taught differently.
Without teaching the kids these simple facts, things can easily get out of hand. “Traditionally” developing kids may resent the treatment given to “special” needs kids. “Special” needs kids may not be happy with themselves and want to be more like “traditional” kids.
The only way to be sure these ideas don’t muddle around in our kids heads, that I can tell, is by giving our kids the gift of self-worth and teaching them the value of it.
When there are multiple kids in a family unit, immediate and extended, I think it is important for us to teach them to respect the differences among them. They should not feel inferior or superior because of these differences. They will not know that unless we teach them.
It is our job to help them understand what it is that makes them different and why it is great to be different. If there were only chocolate chip cookies in the world and no snickerdoodle or peanut butter or oatmeal cookies, it would be boring. Life is more interesting with lots of different flavors!
Not only is it our job as parents to teach the respect of differences as part of that gift of self-worth, but, it is also important to teach our kids what it is that makes them amazing. Janie’s athleticism is amazing, just ast Joey’s knowledge of history is amazing. It is okay that neither possesses the same strength as the other. We can teach them to respect what they are good at and what others are good at.
Yes, they can do both, they can enjoy their successes and the successes of others. They will only know this if we teach them. We live in a society that seems to want to raise kids as cookie cutter images, to spare feelings and avoid jealousies. But, that’s not how life works. I prefer to help kids understand that we are not all the same and that is what makes the world beautiful.
I see the world differently than I ever imagined I would when I became a parent. Parenting is freaking hard! There are no directions stamped to the tiny person’s diaper when you take her home.
Parenting a kid with special needs adds a whole additional layer of challenges to the job and your resources for help are not as abundant. It is demanding, scary, exhausting AND phenomenally rewarding. Part of our job is to protect our little girl, help her to develop and thrive, love her unconditionally and educate those around her not to fear her differences but enjoy them as the interesting pieces that make her special.
By teaching our angel these lessons we are giving her the gift of self-worth. We will help her to nurture that gift and harness the power it will give her for her future.