Special Needs Parenting: Hang in there, it gets easier!

Special Needs Caregiver Burnout

Overwhelmed ParentDon’t Worry! Let me assure you that life will get easier.  When my daughter was young, I was sure that life as I once knew it was over.

Kids will be Kids

Going to the grocery store with two toddlers seemed impossible.  One of my children could not walk and the other child was running away from me.  When I got too close to the shelf of cans my daughter cleared the entire shelf of cans with one arm.  As I bent down to pick them up, my son ran away from me.

Later that day, I spoke with our educational advocate at The ARC.  I told her that I was sure I would never be able to go to a grocery store again.  She laughed and said, “You know, not all of your daughter’s behaviors are related to having disabilities.  She is a toddler.  She will naturally outgrow many of these behaviors as she matures.”  She was right.

Less Appointments

When my daughter was young, my days were full of meetings with new doctors and trying several different therapies. We were unsure about what caused her delays and I was determined to find someone to help her.  Now that she is older, I know what helps her based upon my years of prior experiences. Thus her routine is set and that means less doctors appointments.

School Routines

After years of listening to “advice” from several teachers and therapists and getting conflicting opinions, I started looking for the best practices and policies based on research.  Teaching is a profession based on research.  My daughter needs a great education based on the latest research. Needing lessons and classrooms rich with language, our focus changed to finding the best materials and technology available to include her in the lessons–rather than moving her somewhere else.

Bringing conversations back to educationally sound, researched practices sheltered us from people giving their opinions that our daughter “belonged” somewhere else.  This held our course for an inclusive, research-based experience for our daughter.  The opinions of others no longer disrupted our path.  Our daughter’s happiness and growth in our neighborhood school showed us that our work was definitely worth our efforts.

Mobility Provides Freedom

I need equipment that helps me to easily bring my daughter everywhere I want to go.  People at the hospital that specialize in wheelchairs and seating are a wonderful resource for me!  A jogger stroller big enough to accommodate my daughter into adulthood, a wheelchair, and an adaptive bike (made for two) gives me the freedom to bring my daughter with me as I enjoy the activities that I was missing.

You’re going to miss this…

I met a mother with a grown son with disabilities.  How did she do it?  Sadly she told me that she wished she had enjoyed him more when he was young.  She felt there was so much worry in her days that she didn’t take enough time to enjoy his childhood.

This Too Shall Pass

My daughter is 14 years old this month.  There are still days and weeks that seem almost impossible to manage.  However, with years of perspective I know that these days and weeks will pass and a calmness will follow.  If you have a young child with disabilities, let me tell you something I wish someone had told me–I promise, life will get easier.

Jennifer

Written on 2011/12/30 by:

Jennifer

Jennifer Greening, Ed.S. is the author of Opening Doors, Opening Lives: Creating awareness of advocacy, inclusion, and education for our children with special needs. Her book is used in university classes across the country. It received positive reviews from the Autism Society of Michigan and was awarded 2010 Best Books Award Finalist by USA Book News. Visit her website at www.jennifergreeningbooks.com.
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  • http://www.insidethebellyofthebeasts.blogspot.com Renee Zerangue

    You’re so right. My son will turn 9 in a few days. Life is definitely easier. For example, I walk into his bathroom and see his bath towel crumpled up on the towel rack and toothpaste blobs in the sink. I don’t complain though, because I remember the days when I had to do those daily tasks for him. Now, he bathes himself and brushes his teeth independently!

  • http://www.jennifergreeningbooks.com Jennifer Greening

    Some mothers walk into a bathroom and view a crumpled towel and toothpaste in the sink as aggravating.  You have been blessed with the perspective to view the crumpled towel and the toothpaste in the sink with gratitude for the progress your son has made.  

    I am thankful for the quiet days, the periods of good health for my daughter, her accomplishments, and the things that come effortlessly to my sons.  My daughter has taught me to see all the daily miracles.  This is the quiet wisdom I see in the faces of parents of older children with disabilities.  As a young parent I did not have this perspective.  I am thankful for the grace and perspective that I have gained from my experience.

  • Rose Gutman

    I read your article with interest.  I respectfully need to disagree.  Yes, it’s true when your special needs child is young, you wonder if you will survive the latest challenge.  However, you face one day at a time, not thinking about what the future will bring.  You commit yourself to providing your child with the right teachers, therapists, and extra curricular programming.  No word in your child’s IEP is left unscrutinized.  So this is life, you’ve made peace with it.  But as your child enters adulthood and you the parent are older, life becomes complicated.  Trust me.  The roller coaster is different, but nonetheless you are still riding it.  It is an intensely emotional time. Who is going to take care of my child when I’m gone.  No one can possibly fully understand his/her needs.  There isn’t a day, or an hour, or even a moment when those realities present themselves.  So yes physically it may be easier, but emotionally it’s a train wreck.

  • http://www.jennifergreeningbooks.com Jennifer Greening

    I think the Friendship Circle provides an opportunity for parents to share information.  There are many parents that have gone before us and have created organizations and networks of support.  I have had the opportunity to serve on The Board of Directors for The Arc of Northwest Wayne County.  The Arc is a national organization that provides advocacy and service on behalf of people with developmental disabilities.  I have attended “After I’m Gone” workshops sponsored by The Arc and hosted by attorneys.  While it should be common knowledge, we did not know that a Special Needs Trust was something we needed to look into.  
     
    I have attended national TASH conferences.  Each time I attend the conference I am inspired by the hope and encouragement from the parents of adult children with disabilities.  I am reminded that my worries and my journey is not unique.  There are families that have gone before me and have plenty of advice to offer.  However, what moves me the most are the adults with significant disabilities that are living independent, productive lives.  
     
    There is an upcoming event hosted by Wayne State University’s Developmental Disabilities Institute.  It takes place on January 13, 2012 from 6-10 p.m. at the Detroit Institute for Arts.  “Possibilities” is a series of videos recently produced by the DDI.  It is a compilation for four stories from girls and women who are experiencing life to the fullest regardless of their disabilities.  Their stories span from childhood to adulthood (4, 20, 31, and 53) giving viewers a glimpse of how each stage of life can be met with competence and potential.  If you are interested in attending contact http://www.ddi.wayne.edu.
     
    At every stage of my daughter’s life, I have met someone who doubted our success.  However, I have been learning how to help my daughter learn to live without me since the day she was born.  If you need assistance I encourage you to continue to reach out to organizations until you find someone that can truly help.