What I Wish I’d Known about Having a Child with Special Needs

What I Wish I'd Known about Having a Child with Special Needs - jenniferajanes.com

What I Wish I’d Known about Having a Child with Special Needs

I could probably write a book about things I wish I’d known about having a child with special needs, but a few things really stand out. If I had it to do over again, here are the main things I would tell myself as I started out on this journey:

  • Trust your gut. While you may grow tired of being right, especially when it means more diagnoses to face and more things to deal with, you will be right more often than not. God has given you the instincts and intuition needed to care for your child. Trust yourself.
  • You won’t get all the answers you want. Real life isn’t like TV shows and the movies. Often, there are no easy answers. After years of specialist appointments and therapy sessions, we still don’t have the overarching diagnosis for our daughter. Genetics doesn’t even have the necessary tests for the next step developed yet. And, if you do get some answers, there’s often no good answer for the question everyone asks—and that keeps you up at night: What’s the prognosis? Will she outgrow _____?
  • Life will settle into a routine. Despite how overwhelmed you feel with each new diagnosis, therapy, medication, and specialist, life does settle into a routine, something that feels like a new “normal.” Hang in there through the transition. Things will get better.

Words of Wisdom from Other Special Needs Parents

I asked some of my friends who have children with special needs, defined as children who are gifted, have medical issues, neurodevelopmental issues, learning challenges, etc., what they wish they had known as they started this journey. Here are their thoughts:

“That I didn’t need to rush and try to ‘fix’ all delays and problems at once. We found we could slow down and address the most pressing issue one at a time. Much less stress involved!”  – Heather Laurie

“Oh, it’s ok to do only FOUR long division problems a day and call it ‘math’ for the day. You are doing all 4 operations, so it is big bang for the buck. Especially if you have a child who is struggling to master it.

I wish I had known to trust my instincts and not second guess myself so much.” – Carol Anne Swett

“One thing I wished I had known or would have told myself is that it is okay that our children are different. Everyone has their own strengths and weaknesses. What works for one child, doesn’t always work for another.” – Joy Ellis

“I wish I would have spent more time in the beginning addressing the emotional needs rather than seeing it as an academic issue. I put all my energy in finding the right curriculum, the right method, and the right strategy to ‘fix’ my child that I forgot about the child. My child doesn’t need to be ‘fixed,’ my child needs to be confident in her own abilities, feel loved, and feel capable. This is her journey, not my project or homeschool obstacle. God knew she would struggle with dyslexia and He had a plan and purpose for all of it. He also gave me charge over this child so He will equip me. I just need to trust in Him and relax.” – Richele McFarlin

“That I would have fight for everything from diagnosis, therapy, treatments and second opinions.” – LaToya Edwards

“Two things… 1) That at our darkest moments (for which there will be many), we should hold on and know that at some point, there will be a reprieve, a breather, a breath. That while we await the next thing to happen, and it will happen, there will be moments of light and promises of warmth. 2) That being J’s mom will be the most fulfilling, purposeful time in my life.” – Gina St. Aubin

“That you don’t have to end up with the normal cookie cutter life you think you should have to be happy and at peace with who you are and who your amazing child will grow up to be. You will find happiness in the smallest of things and live life so much more than you ever knew was possible.” – Cheryl Bailey

“Sometimes Johnny Ben will not eat or sleep for a few days. After talking to his doctors we realized that there really isn’t much we can do about it and that he will “bounce back” after a few days. In the beginning it really stressed us out, but now we just offer him nourishing shakes and relaxing environments and wait without near as much anxiety. A close second is that he may never speak. No one told me that up front.” – Angie Schott

“That it would be a challenge but as the chosen mother to this child I am equipped to handle it! It takes research, prayer, and love. That I do not have to fear the unknown. God takes the hard and makes it beauty from it.” – Angela Biehn Parsley

Paul Eiche wrote a letter to himself and his wife on this very topic—what they wish they’d known at the beginning of their daughter’s life about her struggles and medical issues.

For more articles about homeschooling or parenting a child with special needs, click here.

Are you interested in seeing what others are writing as “Advice to My Younger Self“? Click the graphic below to see!


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6 Responses to What I Wish I’d Known about Having a Child with Special Needs

  1. Bird says:

    Beautiful post! and beautiful comments by everyone! I too wished I would’ve listened to my gut even more than I already do in the beginning and not back down from what I know to be true within, but at the same time I feel that my decisions were all a part of the great lesson of life :). Blessings to all of the amazing mothers on this journey :).

  2. Marianne says:

    Lots of wisdom here Jennifer. In the end, God has it all under control. By walking with Him, we will find the way. God bless your sweet family!

  3. Bird says:

    Amen, Praise God :)

  4. Pingback: The Loving Parents of Children with Special Needs - Everyday Superheroes | LivingMontessoriNow.com

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