Ten Tips for Parents with a Special Needs Kid Written by a Person with Disabilities

Friends,

 Wow! Do I have a treat for you. Meet my young adult friend, Nikki Abramson. Nikki was told by doctors (at the age of five) that she would die in her teens. Nikki is passionate about encouraging people to find hope and achieve success in their life journey. She is a Korean American adoptee who battles several rare and severe medical conditions and is overcoming many obstacles. She walks  by faith with hope each day. 

Whether you have a special needs child or not, her story, wisdom, and words are certain to bless your heart.

With faith hope and love,

Lori

  

Walking with the Unknown by Nikki Abramson 

Sometimes our deepest challenges are our greatest blessings. 

I never thought I would  consider my disability a blessing. However...the life experience I gained from walking with a disability as a child has shaped my view on the world and helped me to see people for who they are. 

We are people first, not the disability first.

As a young child I grew up with a rare and relatively unknown metabolic muscle condition called Mitochondria Myopathy. Mitochondria Myopathy is a muscle condition that cause lactic acid build up and tires my muscles quickly. 

As a result of this condition, I have a handicap parking sticker and a wheelchair. While in school I had other adaptations such as extra time taking tests. 

After college, I was in a car accident and developed Dystonia. Dystonia, similar to Parkinson’s, another rare neurological condition causing involuntary muscle spasms debilitated my life. I was bedridden for seven months and now am forced to work part time, only drive a few miles from my house, and rely on the help from my parents.

All I wanted was to live a normal life and be like everyone else. 

However, every day I felt different as there were many precautions I needed to take a hold of to monitor my energy level. Having a disability my whole life, I needed to learn to advocate for myself. My parents have given me tools to advocate for myself by modeling this for me as a young child in school. When they advocated for my needs I felt empowered to be like everyone else. I had an incredible care team with my parents and doctors/medical professionals who pushed me on to greatness and believed in me. It was frustrating at times when people didn’t understand what you have and you feel like you’re walking around advocating for yourself on a daily basis. 

I wish I could wear a big sign that said this is what I have especially when the disabilities I have are relatively unseen.

After 29 years of dealing with disability, I feel empowered to share with parents how to help support their child(ren) with disabilities. After all, I walk it daily.

Here are ten ways for parents with special needs kids to support their child:

1.      Pray for your child and surround yourself with a team of people that will encourage and support you. There will be tough days ahead.

2.      Be supportive. Your child needs your support. You are the best support and advocate for him (or her). Do what you can for him.

3.      Treat him just as any other child. Yes, he may have some unique needs and therefore may need some accommodations.

4.      Encourage her. Say, ‘You can do it.’

5.      Give your child tools to be able to advocate for herself.

6.      Don’t blame yourself or your child for the disability. You didn’t do anything wrong to deserve this.

7.      Accept the disability. Learn all you can about it.

8.      Take thorough notes from all doctors’ and medical care professional’s visits.

9.      Teach others about your child’s disability.

10.  Know that God will use you and your struggles to bless others. 

Having a disability is a struggle.
Parents, I urge you to be an advocate and
love your child knowing that they desire to be loved.
Nikki

       As he went along, he saw a man blind from birth. 

His disciples asked him,
 “Rabbi, who sinned, this man or his parents, that he was born blind?”
   “Neither this man nor his parents sinned,” said Jesus,
 “but this happened so that the works of God might be displayed in him."
John 9:1-3  

      Nikki Abramson is the Founder of Renew Hope LLC , a teacher, leader, performer, speaker, mentor, and author of, I Choose Hope.

You can find Nikki's book  I Choose Hope on Amazon or over at Rivershore Books.
Connect with her on Linkedin , follow her on Twitter or 
follow me on Facebook. 

http://www.1Corinthians13Parenting.com 

7 Questions for Jeff Davidson father of Jon Alex aka Superman!

Readers,

You are in for a treat. Meet Jeff Davidson. Jeff is part of the 1 Corinthians 13 Parenting team and he typically writes about faith and being a dad of a special needs child. His articles, like his newly released book (No More Peanut Butter Sandwiches) , are honest and tender. I have to say, many times they have brought tears to my eyes.

You will appreciate Jeff's heart, strength, and transparency. Not only is he part of the 1C13P team but he has his own ministry, Rising Above Ministries,  for parents of special needs kids. I have been drawn to Jeff's message because my oldest has a hidden disability (a speech and language delay). Her struggles are not profound like Jon Alex's but I can (on some level) relate to the challenges and emotions Jeff describes. In fact, I think most parents can relate whether they have a special needs kiddo or not. 

with faith, hope, and love,

Lori

When and why did you begin your ministry?

We began Rising Above Ministries in the late fall of 2005 by hosting our first worship service for area special-needs families. Over the months and then years afterwards, we began adding retreats, conferences, family events, social activities, small groups, and support groups. Initially we operated just in Middle Tennessee. Four years ago we felt God calling us to step out in faith and build Rising Above Ministries into a national special-needs ministry.

Rising Above was birthed out of our experiences raising our own son Jon Alex, who has significant special needs. We experienced the pain, doubts, and swirling emotions all special-need families face in their own journey. We also saw the impact that it has on a family’s faith and the toil it takes on every aspect of life. We were determined to establish a ministry that reached out to the whole special-needs family, as every member of the family is affected in different ways.

What are some of the biggest challenges and successes?

The special -needs community is full of folks who have lost their hope and faith.  They are hurting spiritually, relationally, and emotionally. The divorce rate is staggering and we have an epidemic of dads walking away from the family. The challenges are huge, which makes reaching those families with the love of God and hope in Christ all the more important.

Our definition of success may seem a little unusual. At the end of every day, we ask the question, “Was God glorified today through Rising Above?”  If we can say “yes,” that day was a success.

What feedback have you received about your ministry?

The response and engagement with Rising Above has been incredible. The fact that my wife and I live this walk ourselves, and that we are very open, honest, and transparent about the journey resonates with others going down the same path in life.

We like to say that we are God’s ambassadors or messengers to the special-needs community.

Tell us a little about your new book, No More Peanut Butter Sandwiches: a father, a son with special needs, and their journey with God.

I was not prepared to be the father of a son with special needs. In fact, I was convinced God had ruined my life, destroyed all my plans and dreams, and abandoned me.

Now, as I say in the book, I realize that “God sent a broken child into a broken world to a broken father, so that together they would find God in their brokenness.”

God gave me a masterpiece of His creation. I had prayed for God to heal my son and change him, only to discover God was using my son to change and heal me.

This book is really for anyone struggling to find purpose in his or her pain. It’s about finding God’s presence through the most difficult, trying, and bewildering seasons in your life.

The book shows readers that God has a plan and a purpose for every person and life. It also shows that in the times you feel the furthest from God, God will use those times for the biggest manifestations of his presence and bring you closer to Him than you ever were before.

It’s for anyone and any family, not just those with special-needs. I like to say that it’s God’s story, told through the eyes of a special-needs dad.

Where can we find No More Peanut Butter Sandwiches?

No More Peanut Butter Sandwiches is available online at amazon.com and barnesandnoble.com.

What are you working on now?

I have started my second book with the working title, The Heart of the Special-needs Dad. In the new book I will be looking at my five-finger definition of the roles a special-needs dad fulfills for his family. Those include warrior, protector, provider, encourager, and equipper.

How can people connect with you?

My personal blog can be found at goodnightsuperman.com. I’d love to also connect with folks through Facebook at facebook.com/ramjeffdavidson or twitter at @ramjeffdavidson.