What Special Needs Moms Wish You Knew

I wish I could say the phrase Autism Spectrum Disorder took me by surprise in August of 2013. I wish I could say that even though I felt this diagnosis was imminent, that I suddenly was at peace with how this changed our family. Yet I can’t.  That phrase changed my life.

In my personal journey, I grieved the diagnosis for several months in a pit of despair; crying, questioning, and seeking God for His wisdom.  {You can read my journey of healing in Accepting Autism: From Grief to Peace}.

God, in His gracious healing power, pieced me back together and I began living again, standing firm on His promises for peace and direction. A new normal emerged and we learned how to live life fully with our extra special little girl.

Now over a year and a half into our journey, it’s beautiful to look back and see how God has guided my new role as a special needs mom. Even more amazing is the community of special needs moms, who shepherd these extra special children and lead them on a path towards progress and independence. These ladies of strength, grit, and selfless love are heroes of the heart and I am proud to say I am a part of this group of courageous women. Yet, I find a common thread, a cry of the heart of this community, that we wished everyone else knew about our lives.

What Special Needs Moms Wish You Knew

We want your prayers, not your pity.

I often hear the phrase, “I don’t know how you do it”, as outsiders look down on me with pity.  They see the meltdowns and the limited speech and automatically pity my life.

But don’t.

We, as a special needs community, need your support, your friendship, and your presence in our lives, but there is no room or time for pity.

Our lives may look a little different than yours, but this is the life we’ve been given, and we would love for you to pray for us, {typically for strength, peace, rest, and progress for our child}, but please don’t look on us with pity.

God crafted and molded our children, just like He did yours, and regardless of a disability, we are a proud group of moms who love our children to the core.

Be understanding and patient

Being a special needs mom is not for the faint of heart.

Sometimes our lives are filled with more child tears and tantrums than you can imagine.

Sometimes we’re limited in activities because of our extra special gifts from God, but that doesn’t mean we don’t want to be included.

When we turn down an invitation, or five, simply because an activity won’t work for our child, be understanding and flexible.

Be patient and keep calling us, giving grace for the times our hectic lives don’t allow us to return your call.

Look past the times we’ve had to leave early because of a meltdown or a strict schedule, and just be our friends.

We’re exhausted.

As much as we love our child, life can be hard.  

Children with disabilities often have trouble sleeping, which means we’re more tired that the average mom and shorted on sleep.

Our lives can be more physically demanding, as we have to lift, carry, and control children well beyond the toddler years.

Finding a suitable caregiver in our absence is difficult and we often do not get a break, even though we’re weary to the core.

We are physically and sometimes spiritually weary, as we rely on God solely for His strength.

We are warriors.

“Finally, be strong in the Lord and in His mighty power.” Ephesians 6:10 

Special needs parents are often on guard, ready to battle insurance companies, Medicaid, the school system, and therapists.

We advocate for our child; fighting for what we know is best.

We push our children beyond their comfort level for the sake of progress and growth, trying to pack as much learning into each day as possible.

We don’t give up hope that a new therapy, a new clinical trial, a new diet, or just plain hard work will pay off and our child will make more progress than predicted.

We can be lonely.

Motherhood can feel isolated and lonely at times, yet when you mix in a child with special needs, women can feel like an island.

While sympathetic, others can’t really understand what it’s like to walk a mile in our shoes, and there can be a sense of loneliness that envelops our lives.

And while we have to put our children above our friendships, we want and need friends to laugh with and talk to about life.

So, please, don’t stop being our friends and loving us when the diagnosis comes. We need you more than ever!

Just love us where we are, and in our own way, our exhausted selves will love you back and thank you for the extra joy you bring into a hectic life.

Do you know a family that has a special needs child? What experience have you had loving and helping them along their journey? Let us know in the comments below!

Not quite sure how to pray for your Special Needs Child or for a special needs child in your life?
Download our FREE Prayer Guide with 5 specific prayers for the Special Needs Child, written by a mom who understands.

5 Prayers for the Special Needs Child with FREE Prayer Guide

Sarah Ann
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Sarah Ann

Sarah Ann is a redeemed child of God and perfectly imperfect in every area of my life. Along with her husband they have battled the storms of cancer, infertility, adoption & Autism together the past 10 years. Find Sarah Ann at FaithAlongtheWay.com where she writes about faith, family, and life with special needs.
Sarah Ann
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2 thoughts on “What Special Needs Moms Wish You Knew”

  1. Thank you for writing this…. I could have written something similar if I only had the time…. Life can be hard and challenging with a special needs child or two in the house but it is also full of blessings and special memories when your child or children reach a goal or meet a milestone… God bless you and your family!

    • Thank you, Susie! You are SO right! It is full of blessings and on those days when progress comes, you can feel on top of the world! Blessings to you and your family!

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