A Support System for Special Needs Families

I can’t imagine what life must have been like 50 years ago, or even 20 years ago, when autism was deeply misunderstood or virtually unknown. Did the parents feel isolated in communities simply because their child did not fit the mold? Some were accused of not loving their children enough, termed as Refrigerator Mother Theory, which has now been debunked as complete nonsense.

Temple Grandin, a well-known autism advocate and also on the autism spectrum, remembers this first hand. Her mother was told she must be too cold toward Temple, to explain her irrational behavior. This was the conclusion of a medical professional in the 1950s! Other parents who felt hopeless sent their children to mental institutions where they lived out the rest of their days. I don’t think it was because they didn’t love their children, but many had few options and lacked community support.

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Today is vastly different from a time not too long ago, and for that I am grateful. Unfortunately it can still be a struggle for parents with special needs children to relate or share with those living outside their world. Things get lost in translation. It can sometimes feel like an alternate universe filled with IEP meetings, therapy appointments, medicine, natural supplements, working with educators and doctors to make sure your child receives exactly what he needs. I get excited when Jesse sleeps through the night. We celebrate little milestone achievements, like putting two words together, where some might take that for granted especially at age 6.

The “special needs” jargon sounds foreign to someone not in your shoes. Not to mention the emotional developmental delay for most on the autism spectrum. An outsider might conclude your child is “behaving badly” and “lacks necessary discipline”. It’s true they may act differently than their typical peers with public meltdowns, lack of social awareness, or stimming behaviors just to name a few. However, we work toward good manners and accomplishing life skills, but it may take our kids longer to get there.

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Even though family and friends rally around to offer support, a missing piece of the puzzle is found in support groups, organizations, or families on a similar journey. Our stories won’t look exactly the same because no two diagnoses are alike, but there will be an unspoken understanding. And thanks to the Internet, families who live in rural areas can still connect with others who feel isolated themselves.

You don’t have to do this alone. Sometimes we go through trials to comfort another weary heart on a path we’ve walked a little further down. I still can’t fully express my life to someone without a special needs child, and that’s okay. Can it be lonely and frustrating at times? Yes. But then I have a conversation with a mom in the same boat as me. We share a bond. I have met amazing parents who relentlessly advocate for their children. They remind me what we all should do- be a voice for the voiceless. This applies to so much more than the autism community.

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Most of us desire to be understood, to form a connection with someone we can identify with – to be seen and known. When we go through difficult times, isolation typically follows close behind. Extending kindness in the form of a hug, a smile, a prayer or simply your presence can do wonders for a hurting soul. The one thing we can offer each other is grace; Grace to practice patience and compassion. May we live each day with hearts open to the needs of others and may we receive the same kindness.

 

Grace upon grace,

April

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