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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Jellyfish in the Baby Pool: Protecting my child with special needs

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All parents want to protect their children. We are constantly on guard, looking for potential threats. Parenting a child with special needs often requires an extra measure of caution, because problems can hide in the most innocent of places. Where some parents see fun and merriment, we may only see danger, potential meltdowns, or sensory overload.

An experience we had many years ago on a family vacation comes to mind as an analogy. My husband and I took our two small sons to the beach and it was a lot more work than we expected, partly because our toddler and preschooler had distinctly different sensory needs at that stage. My oldest child spent most of his time avoiding the sand and crying “Dirty, dirty…” under his breath. My youngest, on the other hand, couldn’t get enough of the sand. He would sit and eat it by the handfuls.

sticky fingers                      sand feast

After a while I was exhausted and decided it was time for “easy.” We headed to what I thought would be a safe haven: the baby pool at the beach club. After a few minutes of play I stepped on something squishy at the bottom of the pool. I picked it up, and to my horror realized I was holding a jellyfish. A JELLYFISH. In the BABY POOL! A man saw my reaction and said nonchalantly, “Oh yeah. my kid was playing with that. It doesn’t have any tentacles!” I was appalled. Why would anyone take a risk like that with the safety of small children? Not to mention the fact that a baby pool doesn’t need any extra organic material, if you know what I’m saying. Not wanting to take that man’s word for it that no one could get stung, I disposed of the jellyfish. It was a wake-up call to me that there was something potentially dangerous in an environment that should be protected.

As my children got older, and my youngest son was diagnosed with an Autism Spectrum Disorder, I realized that the world is full of “jellyfish in the baby pool,” so to speak. Other parents of children with special needs know what I am talking about. Experiences that may be perfectly safe or enjoyable for typical children can be dangerous or overwhelming for a child who is physically or neurologically different.

Dinner out as a family? Lots of ways you could get stung by jellyfish. Taking your kids with you grocery shopping? Jellyfish. Public school? Jellyfish. Amusement parks? Jellyfish. Trick or Treating? Jellyfish. Dentist appointments? Jellyfish. Enjoying the latest Disney movie at the theater? Jellyfish. Haircuts? Jellyfish. Playing outside with other children? Jellyfish. Easter egg hunts? Have mercy. (If your child can get through the waiting for the start of the hunt then you sure as heck better have some emergency eggs stashed in your pockets just in case the hunt itself doesn’t go well.)  Chuck E. Cheese? Actually, never mind that last one. I’m pretty sure all parents feel the same way about that place.

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Choose Compassion

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Each day presents us with opportunities to have an impact on the lives of other people, for good or bad. We have a choice as to how we will respond when life becomes complicated. I encourage you to choose compassion. Here is a beautiful email I received many years ago from a friend, and reprint with her permission.

I was sitting on a plane down to Phoenix AZ in the window seat. A 91 year old woman was next to me, and next to her was a 40 something professional looking woman named Diane. We all chatted pleasantly about the previous Mother’s Day activities, and the older woman was telling us about her children. The plane took off and we all shut our eyes for three seconds. Suddenly, a child became upset. She was SCREAMING. She was in the seat in front of me. We all looked at one another and shrugged. This was going to be our flight. So, we took out our books, and magazines, and immediately felt sorry for the child. Her ears must have been hurting. She looked like she was about three when I peeked at her when we sat down.

The screaming continued.
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The Talk: How I explained my son’s Autism diagnosis to him

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My youngest child and I finally had “The Talk”. I had recently sensed that it was imminent, I knew that it was crucial, and I also had conflicting feelings about it. Many parents of children with special needs know what “Talk” I mean, and it’s not “The Birds and the Bees”. During this “Talk”, for the first time, my child and I discussed the fact that he that has a form of Autism.

My son is six-and-a-half years old and has a dramatic personality. Everything he feels, good and bad, he feels on a large scale. We jokingly call it “not boring”. He has an inquisitive mind, a huge smile, and a great sense of humor. I could go on and on listing positive adjectives to describe him. He also happens to have a diagnosis of Autism Spectrum Disorder, what some might call Asperger’s Syndrome. Autism is not the sole defining characteristic of who he is, but it is an important part of who he is. At first glance people may not realize that he falls on the Autism Spectrum, and since he is verbal and mainstreamed some have assumed that he must not face any real challenges. They don’t realize that although he can keep up with his peers academically, he often struggles to relate to them socially. They don’t see the times he gets frustrated or feels left out when interacting with his classmates. They don’t see him fighting to concentrate, or how he vacillates between both sensory-seeking and sensory-avoiding behavior. They also don’t see how Autism has an impact on him and our family life every single day, and how it presents both blessings and challenges. That being said, I am well aware that our situation is very different from families affected by more severe Autism. They have their own set of challenges, which at times seems to dwarf those of my family. But the truth remains that in our house we also face challenges. All families face challenges, whether their children are Neurotypical or not.
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