Resources for Parents from Jennifer Holt

To go along with Jennifer Holt’s article on being a social butterfly in the January issue, here are some extra resources for parents.

 

 

Special Needs and Resolutions by Ellen Stumbo

Happy New Year!
source: erjkprunczyk

With the New Year here, it is time for me to think about resolutions. The thing is, having children with special needs has changed the way I look at these hopeful declarations of a better me. So I turn to my daughters and see in them examples of who I want to be.

1. I want to love people despite of their appearance.

I tend to judge and keep my distance from people based on their exterior. My daughter with Down syndrome has the ability to look past appearances and accept people fully.

2. I want to give it all.

Sometimes, I don’t try very hard; I just do enough “to get by.” My daughter with cerebral palsy gives it her all, she is fully in, trying hard, never giving up. Everything she does, she does it to the best of her ability.

3. I want to experience joy in the little things.

My daughter with Down syndrome seems to find joy easy. She is not just happy; she is filled with joy (when she is not filled with crabbiness). The way her face lights up with a smile, and the deep laugh that comes from her soul when she is surprised with a bowl of ice cream reminds me I need more joy in my life.

4. I want to celebrate with others.

In our home, we celebrate every little accomplishment our girls achieve. Celebration is a normal part of our life; we clap, jump, and cheer often. I want to take that beyond my home, I want to encourage others and celebrate with them. We all need more celebration in our life.

5. I want to make a difference.

The world might see my children as less than perfect, but I know that God has a plan and a purpose for their lives. My children have inspired not only me, but many others around them. Hopefully some day, I will be able to do for others what they have done for me.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

Witnessing Miracles by Ellen Stumbo

talkative little girl closeup
source: zen

I watch as my daughter struggles to walk. Slowly, she takes one-step and catches her balance, then the other foot comes forward, dragging a little behind her. When she finally reaches the couch in the living room, she throws herself on the soft seat. She looks up at me, beaming, “I did it mom! I did it! I walked all by myself!”

So I laugh and cry, clap and jump, and say between the sobs and the laughter, “You did it! You walked!” And she stares at me confused because it is possible her mother lost her mind.

“Mom, are you happy, or are you sad?” she asks tentatively.

“I am so happy that I am crying. I have tears of joy Nina!”

My daughter’s body is tight from cerebral palsy. Simple things, like walking, are not simple for her. I know that sometimes she wants to give up. Her mind fights her body and her body fights her mind. So we cheer her on, we tell her she can do it, and we believe in her full potential. And she tries once more. Then, after years of trying, she finally takes those precious first steps that bring out the tears and the laughter, all mixed together in one ball of emotion. I feel so proud!

Yes, sometimes having a child with special needs can be difficult. Having a 6-year-old child who needs a wheelchair to go for a “walk” can be challenging. But then there are those magical moments. The milestones that are no longer typical, or expected, because they become like miracles. Those are the moments that make all the hard work pay off. In this journey of special needs, we celebrate fully, with abandonment, and with great joy.

Like Erma Bombeck said, having a child with special needs means you witness miracles … and you know it.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

God Came Through by Ellen Stumbo

“God doesn’t call us to be comfortable. He calls us to trust Him so completely that we are unafraid to put ourselves in situations where we will be in trouble if He doesn’t come through.”
Francis Chan

 

When Andy and I saw the picture of a little Ukrainian girl with cerebral palsy, we felt as if we had been looking at our daughter. A sweet smile and a short paragraph was all we had, but our hearts began to beat for adoption. Yet, while the excitement grew, so did our apprehensions.

“Can we really do this financially?”
“Will Nina fit in with her sisters?”
“Will Ellie feel resentful having two sisters with special needs?”
“Could Nina’s needs be more than we could handle?”
“Are we alone in this?”

Four weeks before our travel date, we found ourselves $10,000 short. Finances had been the greatest hurdle before committing to adopt, and we were in the place we feared. We were discouraged. It was then I came across the quote from Francis Chan.

Okay, Lord, we are over our heads here. If this is what You have for us, You will come through and blow us away.

He did. In the short weeks that followed the debt was covered. Our mailbox was full of letters and checks with generous donations. God’s reassurance: Yes, My child, this is My will.

We did not know what the future would look like with an adopted child. However, we trusted God so completely that we put ourselves in a situation where we needed Him to come through; not only during the adoption process but also in the years to follow. Although there have been trying times in the last two years, all those first questions seem insignificant in light of the love we now have for our daughter.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor. You can read more about her adoption journey in the November issue of ParentLife in her article “Orphan No More.”

Not Easy but Good by Ellen Stumbo

My daughter has Down syndrome, and dealing with her diagnosis was difficult. I pictured a life defined by limitations, rather than possibilities. After a while, I began to see the blessing that I had in my daughter, and I came to realize she was the baby I always wanted, I just never knew it before.

If I could go back in time, this is what I would tell myself:

 

  • Dealing with her diagnosis will be one of the hardest parts of the journey. The rest is simply everyday life.
  • Grieving comes in waves. New stages might require for you to grieve all over again. It’s okay. It does not mean you don’t love your child or that you have not accepted her diagnosis. It is normal to feel this way.
  • Reaching milestones will be an accomplishment of extravagant joy and celebration.
  • She will be a child first. Her disability will only be a part of who she is, not what defines her.
  • You will love her with a fierceness that will surprise you and fuel you every day.
  • Your heart will expand a 1000 times over.
  • She will bring you incomparable JOY.
  • You will come to realize how much you needed her.
  • Thanks to her, your priorities will change as you understand what really matters in life.
  • It will not always be easy, but it will be good!
  • You can do it, and you will be better than okay.

My daughter has collaborated with God to work in my selfish heart. A heart that many times is so lost in this world that it forgets that the standards I live for are not the ones set by people, but those set by God. It has turned out Down syndrome was not a limitation, but a gift that has expanded my heart.

October is Down syndrome awareness month. As I look at my daughter, I recognize I have much to celebrate and be thankful for.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

Friday Links 10/12

 

Did you read or write something you’d like our readers to see? Leave a link in the comments, on our Facebook page, or send us a Tweet!

Added to Saturday Linky Love at Vanderbilt Wife.

The Miracle Boy: How Early Intervention Aids in Sensory Processing Disorder (SPD)

In the April 2011 issue, we feature Jennifer Shaw, a musician who went through a troubling time. Here’s some more of her story about her son Toby’s battle with a Sensory Processing Disorder (SPD).

lovebrokethrough.jpg____________________

SPD is a dysfunction of the brain in which sensory signals from the body (vision, auditory, touch, olfaction, and taste) are not processed normally by the brain. For Toby, any touch was received by his brain as hurting. “Food in his mouth hurt. Droplets of water hurt,” Jennifer explains. “Clothing felt intolerable. These children go into survival mode and they don’t learn to speak. That’s why speech delays are the first marker.”

Occupational therapy made the difference for Toby. “Any therapy before the age of 3 is critical,” Jennifer advises. “The brain is able to be re-wired at that point. So don’t wait. Don’t second guess yourself.”

Play-based, with no medications involved, Jennifer watched as Toby’s therapists positioned his body in weird ways, forcing his brain to make new connections. “We did everything they did at therapy at home as well,” Jennifer notes. “We didn’t want the girls to feel ignored because we had a child [with special needs], so we really tried to involve them in his therapy.”

Toby’s progress was rapid. The folks working with Toby called him “The Miracle Boy.” Today Toby is healed completely. Jennifer remains clearly grateful to all those who helped Toby. “It was like they led him out of prison, the prison of his own body,” she says. “They let him be who God made him to be.”

Is your family going through a difficult time? Maybe it’s a diagnosis of special needs or a death in the family or _________ (fill in the blank). Find encouragement in Jennifer Shaw’s amazing testimony in the April 2011 issue.

Encouragement for the Weary by Jennifer Holt

Parenting a special needs child is one of the most daunting and rewarding tasks a parent could ever be asked to do. Many evenings I have found myself lying in the dark, crying out to God and begging Him to heal my son’s autism. I have also spent many nights worrying about Sam’s future, clinging to God’s promises to prosper him and not to harm him (Jer. 29:11-13).

When my husband I attended our first orientation session about this overwhelming disorder, the speaker began the presentation by saying, “Go ahead and mourn the child you have lost.” She proceeded to outline the seven steps of grief, the same steps people experience when a loved one dies. We realized in that moment that the speaker did not have the hope that we have. She obviously does not know the One, True, Living God.

Grand Canyon

As parents of a child with autism, we often feel like we are standing at the edge of the Grand Canyon, with no bridge to help us walk across that chasm. Jesus Christ is that bridge. He offers hope, encouragement, wisdom, and rest. My God is bigger than autism, bigger than special needs of any kind, and ready and willing to help. God has a perfect plan for my son, and for every person He creates.

Before Sam was formed in my womb, the Lord knew he would have autism. I look forward to seeing how God uses this thorn in Sam’s side to bring glory to Him.

Here are a few special promises that encourage me to stay strong in the Lord:

  • “Call to Me and I will answer you and show you great and mighty things, fenced in and hidden, which you do not know.” Jeremiah 33:3 (AMP)
  • “Now if any of you lacks wisdom, he should ask God, who gives to all generously and without criticizing, and it will be given to him.” James 1:5 (HCSB)
  • “But He said to me, ‘My grace is sufficient for you, for power is perfected in weakness.’” 2 Corinthians 12:9 (HCSB)
  • “That’s why we can be so sure that every detail of our lives of love for God is worked into something good.” Romans 8:28 (MSG)
  • “Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord.” Psalm 27:14 (AMP)

Jennifer J. Holt and her husband, Brian, are walking through each day, casting their cares on the Lord, and praying for strength and wisdom as they raise their hilarious, musical, artistic, outdoorsy, miraculous son, Sam, who is now four years old.

Photo used with permission of Flickr Creative Commons.

Don’t miss Jennifer’s article "A Hope and a Future" in the February 2011 issue of ParentLife.

 

Talking About Differences by Amy Fenton Lee

Handicap_person.jpgRecently my 5-year-old son noticed an army veteran strolling through the grocery store in her wheelchair.  Aware of the veteran’s injured legs my son began asking questions aloud about our fellow shopper.  Rather than briskly hushing my son, I recognized the opportunity to begin shaping his world view of disability.

Because the word disability often produces negative images, oftentimes not adequately reflecting an individual’s capacity for contribution, I avoided using the term in our conversation.  Instead, we talked about the lady’s “differences,” noting that her unique life experiences (and service to our country) may have affected her ability to walk. I explained that God creates everyone to have unique physical traits and unique life experiences. As a result, we would expect each person to have different strengths, weakness, abilities, and special needs. And in the case of our fellow shopper, her unique experiences and traits meant that she required a wheelchair to maneuver from place to place. 

Continuing on the subject of differences, I reminded my son how his body does not digest milk easily.  His difference requires us to buy special foods so that he can absorb nutrients and avoid getting sick.  I then asked my son to begin naming other types of differences people may have, and he quickly recalled his cousin’s need for eye glasses and a friend’s need for speech therapy.

While as adults we know that some diagnoses are easier and more commonplace, the goal in these first conversations is making differences an expected part of our child’s world. Conveying our respect for and acceptance of individuals affected by special needs is crucial to shaping our child’s view of disability. Addressing a child’s questions and discussing recognized differences may remove fears and ultimately promote better inclusion of other kids who are different.

Amy Fenton Lee equips churches for ministry to children with special needs through the The Inclusive Church Blog.

Have you ever had to talk to your child about someone’s differences?

With ADDitude

Additude09Fall.jpgDo you have a child with ADD or learning disabilities? For encouragement and support, ParentLife recommends you check out ADDitude magazine.

We are thankful for ADDitude contributing to our September 2009 issue with the great article about social skills for children with ADD and how role-play can dramatically impact kids with ADD for the positive.

Check out ADDitude at www.additudemag.com.

Are there other special needs topics you would like to see covered in ParentLife? Let us know as we plan future issues!