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The truth about being a special needs parent: A Loving Journey

What do I wish people knew about being a special needs parent? And what do I wish someone would have told me?

Being the parent of a child with special needs is an adventure. We experience many emotions all in one day. There are so many ups and downs and so many unknowns.

We have to endure stress that would break a normal person, and we do it with a loving heart.

Sure we may not always endure with grace, and we may not have a lot of dignity left before the day is out. Our hair is always messy and our clothes are chosen for comfort, not for the latest fashion. We may go a day or two without a shower or even a wink of sleep.

We spend some days not knowing when we’ll have time to eat. Hot meal? Ha!

Our lives are always on the go. Our gas tank is always running on empty.

We learn to ignore the little things and think of the big picture.

Of course, there are days when we wish we didn’t have to be so strong. When we wish we were not the person the teacher always calls to “inform” or list “concerns.” There are days where we just want to scream at the top of our lungs that we have had enough. It can feel as if we’ll never survive the daunting task of raising such a special-yet-complicated child. There are times when we wish that parenting our beautiful children didn’t’ present such a complex range of problems that don’t have easy solutions.

We are very lonely at times– canceled play dates and get-togethers with friends, missed birthdays and family gatherings.

When you have a child with significant special needs, a life-threatening condition or a serious illness, your parenting experiences are forever altered and you are forever changed.

There are endless medical tests, appointments with specialists, meetings with a variety of therapists and teachers. As a special needs parent, we learn a lot on the fly and have more knowledge about our child than most medical doctors do.

We do go through so much and will continue to, for our children. Even if we are at our breaking point or overly exhausted, we do it all for them.

But no matter what we deal with or what we go through, we must make time for ourselves. And we must force ourselves to reach out for support — to a friend or family member or even an online group. Know that you can do this. You are a great parent, and you do matter.

And when you have been strong for so long, know it’s okay to have a good cry…or even a glass of wine. And keep on laughing through the hard parts – things will look up and you will survive.

We are special needs parents and we are made of tough stuff.

Trish Schaeffer is a mom of three boys—two with special needs—and a blogger for Central Penn Parent. Follow her at You can follow Trish on Twitter @Alovingjourney and on her Facebook group A Loving Journey-Parents of special needs kids.

Sign up for Central Penn Parent's Capabilities Newsletter! The Capabilities Newsletter is a monthly compilation of the top stories for parents of children with special needs.

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