Parenting a Special Needs Child

It has been just over a month since I experienced one of the most emotional and proud moments of my life.  The chance to watch my daughter Kendall walk across the stage and complete her high school graduation ceremony was a feeling that I can’t explain.  It’s a joyous moment that I will always be able to close my eyes and vividly picture.

I am aware that this is an exciting time for most parents, but my daughter had a much different journey to get there than most kids her age.  My daughter Kendall, one of the most loving, caring, and generous girls anyone would ever meet, fought an uphill battle to achieve this cherished accomplishment. The completion of 13 years of school was a long, difficult road filled with lots of unexpected and challenging twists for a child with special needs.

When Kendall was just shy of her second birthday, her mother and I were informed she had a rare genetic disorder referred to as Isodicentric Chromosome 15.  The syndrome is a developmental disorder with a broad spectrum of signs and symptoms. It really has affected Kendall the hardest in her intellectual ability.

Our initial reaction of course was fear, sadness, anger and a wonder of what was next.  Because the disorder was so rare, there was little information on the prognosis and what to expect.  As parents, we had no idea what to do and how we were going to take it on.  But after all these years it’s been a learning experience that made everyone around Kendall a better person.

I am amazed by the number of lives my daughter has touched and changed. You see, Kendall lives her life exactly the way she was put on this earth to do. It’s the rest of us that learn from her.  Although no one is ever ready to deal with a child with special needs, the best advice I can give is just to love.  Love overcomes so many of the obstacles and that is the greatest lesson I have learned from my amazing daughter.

Children with special needs touch all of our lives, whether they are our child, grandchild, a family member, neighbor, classmate or any of countless other ways you may cross paths. Your life is not complete until you take the time to invest part of your life in learning from a person with special needs.  They teach everyone they encounter important life lessons that most of us forget or take for granted.  I just wanted to share a few of the things that I have learned along the way.

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Celebrate all Victories.. Even the Small Ones

I learned this early on and it’s always remained true: take pride in all accomplishments.  No matter how big or small. Children with special needs seek approval from those that love them and are important to them.  Help them to feel important.  Sometimes it’s hard for them to find that self-worth everyone wants to feel, so make sure they know how great they really are.

 

Don’t Feel Like You Have to Explain Your Child to Others

In the beginning, I always felt like I had to explain my daughter’s disability to everyone.  It got to be a burden and I always struggled with the right words to explain it.  Many times, Kendall was there and I wanted to make sure I wasn’t hurting her feelings.  Eventually, I realized it was important for family members and close friends to understand Kendall’s condition.  However, I didn’t have an obligation to explain my daughter to those that weren’t part of her life.  She’s my daughter, I love her, and she is just being herself.  People will figure it out on their own and accept her for who she is, and if not it wasn’t worth explaining it to them anyway.

 

You’re Not Alone

I remember the day I found out Kendall was going to have a different journey through life than most children.  It was a lonely and scary feeling.  But always remember you’re not alone.  There are so many people out there that are fighting the same fight you are and they can be a great support system.

 

Find Their Passion and Do Everything You Can to Enhance It

Everyone has a passion in life no matter who you are.  It’s no different for children with special needs. Help your child find theirs and do everything you can to help them explore it.  My daughter can’t do math, is only able to do very simple reading, and struggles with tasks that have multiple levels.  But that’s okay. She knows more about animals than almost anyone I know and she loves being outside on her grandparent’s farm.  She does all the chores and it makes her feel like she has conquered the world.  I love seeing the smile on her face when she accomplishes things I can’t even do. She found her passion in life and I will do everything in my power to put her in position to make it a part of her ongoing future.

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Always, Always be Your Child’s Biggest Advocate

I have found that most experts try to tell parents what their child should or will do.  Just remember, no one knows a child like their parent and no one loves a child like their parent.  You always have to protect your child, stick up for them, make sure their best interest is always the number one priority and don’t be afraid to speak up.  They don’t always have the ability to make decisions for themselves, so sometimes the parent needs to be their voice.  If something isn’t being handled properly, especially at school, take every avenue available to help protect them.  They are always counting on their parents to keep them safe and secure.

I leave you with this: just remember to always show as much love as you can.  You may not know what a child with special needs is feeling or thinking but they can always tell when they are loved.  It helps overcome so many obstacles that come up along the way.

Written: Jul 24, 2018

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Jeremy Wolf

Jeremy Wolf

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