20 Things that Parenting a Child with Special-Needs has Taught me About Life in General

 

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I am married, have two children, and I’m still growing. Each day provides opportunities for education about my inner self, about relationships, and about life. Many of these lessons were learned when my youngest son, who is autistic, was very little. I love and respect my son, and wanted to do whatever I could to support him and help him to thrive. As the result of our journey, and meeting other parents along the way, I slowly began to develop some guiding principles that still I try to remember when I find myself in difficult situations. I TRY to remember, anyway. I may have learned these things, but that doesn’t mean I have mastered them. I am still a work in progress. Here is my list so far of things that parenting a child with special needs has taught me about life in general:

  1. Beauty can be found in unexpected places. This first one may sound trite, but is an essential truth I cling to. Life can present us with struggles, yet it is in the midst of darkness that we truly appreciate the light. During our journey I have learned about strength, love, perseverance, and forgiveness. I have also met some amazing people along the way.
  1. Embrace what makes life unique. The world is full of opportunities for adventure. It is also populated by a gloriously diverse people who have a lot to teach us, and deserve our respect and acceptance. Different is AWESOME, and can provide a refreshing new perspective on things. In my house we call it “Not Boring.”
  1. Parenting can be hard sometimes. Special-needs or not, it can be exhausting to have another human being be dependent on you for all their needs. That doesn’t mean that our children are a burden, because we LOVE them. However, full schedules, perpetual problem-solving, and things like constant medical concerns can make us weary.
  1. Ask for what you need. The people in our life don’t always know how best to help us. They may also assume we don’t need anything if we don’t ask, so speak up. Sometimes we require assistance to get through. It’s not selfish or weak to ask for help.
  1. There will be periods in our life where it feels like we take more than we give. This can be especially hard for caregivers to accept. Remember that our worth is not defined solely by what we do for others. There will be other times in your life when you will be in a position to help someone else who is in need. The scales are never balanced.
  1. You are stronger than you think. “I don’t know how you do it,” I have heard people say. We just do what we have to. I think we often underestimate our own abilities and don’t realize how strong we are until given an opportunity to flex our muscles. I am immensely impressed by the strength and resilience displayed by my son, and some of the obstacles that he has overcome. The power of the human spirit never ceases to amaze me, and adversity can teach us and help us to grow. But it is important to remember this next one…

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Way To Go, Kelly Jo!

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During a recent family outing to a theme park I decided to ride a terrifying roller coaster for the very first time. The park had just opened so there weren’t many people around yet, and I walked to the seats in the very back. My husband and children declined the opportunity to join me for this particular ride because they’re not fond of extreme heights ;-). A lady walked up and asked if she could ride with me. I responded that I was happy for the company.

We started chatting and she told me that her name was Kelly Jo and that this was her first summer since losing 100 pounds! She was incredibly excited to be riding this roller coaster because she was never able to fit into the seats before. As she told her wonderful story I found myself tearing up. I then asked if I could share her story with you, and she graciously agreed. She said she lost the weight simply by changing her diet and exercising. I found her story especially inspiring due to some recent personal struggles. I was also thrilled and honored that I could share such a fun and incredibly meaningful experience with her.

We totally crushed that coaster, and the picture at the top of the post is our celebratory pose afterwards. Awesome job, Kelly Jo, and I am so glad to have met you! Thank you for sharing your exciting, happy story!  I am sure you have many more adventures ahead.

My own children had a recent victory of their own at the theme park. They used to be terrified of all roller coasters and this is the first summer they have even been willing to entertain the thought. We rode a couple small ones at first, and even then it took a lot of explanation and prep work. Then one day they simply walked onto a new roller coaster and trusted me that they would be okay, without knowing any details about the coaster (other than the fact that it didn’t go upside down). And guess what? They LOVED it. They didn’t even get upset when it got really dark.

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Victory is ours! This is a BIG DEAL, and it’s about more than just roller coasters. Most of you know that with spectrum disorders comes a lot of anxiety. BatDad and I try to walk a fine line between respecting the Ninjas’ sensibilities and also encouraging them to try new things. I am incredibly proud of them, and took the above picture when they were done. They conquered the coaster AND their fears. Anxiety: 0, Fun: 1

Who knew that a theme park could also provide opportunities to celebrate overcoming personal obstacles?

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The Last Lights Shining

Every year it seems that my house is last one on our street with Christmas lights still shining. I like to leave them up until around Epiphany/ Three Kings Day. To me it feels too hurried to spend a month of frenzied preparation, only to have it culminate abruptly in two days of even more frenzied celebration (depending on your family situation). The very next day we all seem far too ready to simply move on with our regular lives, because “Christmas is over.”

I need more than that. I need time to simply sit, and revel, and bask, and it seems that it is only in the stillness of the days following all the activity of celebration that I finally find Christmas. Once I find it I also wish to keep it for as long as possible. I totally understand that some people want a fresh, orderly start in time for the New Year, and that’s what works for them. But in my experience no celebration of a New Year feels complete without also bringing along the last of the light of Christmas. It serves as a beacon of love, and joy, and hope; illuminating our path for the new days ahead.

I gaze upon those lights of ours, rending the darkness one last night, and I try to draw their brightness deep into my heart. Their warmth reminds me of this truth:

Christmas has come, Christmas is here, and Christmas will remain.

I can cling to that, even if I find myself in the dark.

May the light of Christmas continue to shine for each of you this New Year.

We Are the Champions

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Behold the tiny champions. My children completed training with a running club at their school and then this past weekend ran in a one-mile kids race. In the rain. During pollen season. Even without the extra complications it would still be a HUGE deal. I am so proud of them!

My children have been slowly losing interest in physical activity despite parental encouragement (or maybe because of it). Part of that is because organized sports create a great deal of anxiety for them, even though we started them out on teams very young. They have gotten bored with our small cul-de-sac and tiny backyard (suburbia is not always idyllic). There is also a shortage of boys for them to play with on our street that are NOT doing some sort of organized game. My oldest has asthma and my youngest is on the Autism Spectrum, so sometimes that can further complicate exercise or play (many a day my boys came back inside with tears streaming down their faces).  My husband and I have endured a lot of frustration trying to figure out how to best encourage them to be more active and spend more time outside. And don’t bother trying to judge us & say, “Stop making excuses and get those kids outside!” Just don’t. Moving on…

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The Train Ticket

A repost of something I wrote many years ago on another blog, when I was first facing the reality of having a child with undetermined special needs (he was later diagnosed with Autism Spectrum Disorder). It still speaks to me now as I face difficult situations… or emerge from them and wonder how I survived. I think we are stronger than we give ourselves credit for!

One of my favorite authors is Corrie ten Boom. She was a Christian who truly lived by God’s command that we love one another. That was tested by the fact that she also lived in Holland during the time of Nazi occupation. She and her family helped hide Jews in their home and were instrumental in organizing the Haarlem underground that saved the lives of countless people. What an amazing, inspiring woman.  She makes me want to be stronger, to try harder. I wish I could have met her.

In her book, “The Hiding Place”, she tells a story from her youth. While this tale is about strength in the face of death I think it is also applicable on a broader scale.  As a teenager Corrie had witnessed the aftermath of grief after a small baby in her neighborhood had succumbed to illness. It left her young mind feeling deeply upset, confused and afraid. All those feelings tumbled out at the end of the day when her father came to tuck her into bed:

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