Special Needs: 5 Practical Steps to Helping Families Get through Surgery by Ellen Stumbo

5 Practical Steps to Help Special Needs Families get Through Surgery

It is hard when your child has surgery, but when your child has special needs, it can be even more challenging.  For many kids, their disabilities increase these challenges exponentially.

What if your child is non-verbal and cannot tell you how they are managing the pain?

What if your child has an intellectual disability and they do not understand what is happening?

What if your child has sensory processing issues and the hospital environment becomes overwhelming?

Special needs parents already have a lot on their plates, so here are 5 practical tips to help special needs families get through a surgery:

  1. 1.     Offer to watch the other children on the day of surgery, or the first few days following surgery.

If trusted friends help with the other children, parents can focus solely on their sick child. You might even go an extra step and offer to drive the kids to dance class or soccer.

  1. 2.     Skip the hospital visit

Unless the child with special needs is very familiar with you and you plan to come to the hospital to give the parents a break, it might be best not to visit. Always ask, “Would it be helpful if we came to visit, or is it better to wait.” Some families have a hard time saying no, but it is overwhelming to entertain the visitors while trying to keep their child comfortable.

  1. 3.     Text or email

Not going to the hospital does not mean that you cannot support the family. Text, email, message. You can do this throughout the day of surgery and the days following letting the family know you are thinking about them and praying for them. This is an incredible encouragement.

  1. 4.     Bring meals or gift cards

This helps the family not give their full attention and energy to help their child recover without worrying about the little things, like feeding the rest of the family. Maybe your church can organize meals for a week or two.

  1. 5.     Offer a special home visit

When one of my daughters was in the hospital, a group of women from my church came to our house to clean and do laundry. Not everyone is willing to take this help, but you can offer. Or maybe a group of friends can pitch in and hire a cleaning lady for a day.

Small Progress by Ellen Stumbo

mat man

“Mom. Mat Man?”

Lately, before we begin our bedtime routine, Nichole holds a box of wooden pieces and foam shapes. She is ready for quality time with mom. She is ready for Mat Man.

We sit on the living room floor and I start singing the song. I am a terrible singer. She doesn’t care.

Mat man has one head, one head, one head. Mat man has one heaaaaaaad! So that he can think!

I hold two of the big curves by my head, making a circle. Nichole laughs at me, “You funny!” She reaches out and imitates me. Then she carefully, oh so carefully places them on the carpet.

We make Mat Man.

“Again?” she asks.

Then she asks to make letters. Finally, with the wooden pieces we spell, “Nichole.” She points at each letter and says its name. She knows every letter of the alphabet, but her favorite letters are the ones in her name. N. I. C. H. O. L. E.

My daughter is five years old, and she has Down syndrome. She struggles with her speech, and we are not sure where she is at yet in her intellectual abilities since she has a hard time with her words. This is a learning time, but there is also a heart connection taking place as I find myself overwhelmed with love for this little girl and so incredibly proud of her progress.

And then I think about myself, the many disabilities I have: selfishness, self-reliance, greed, jealousy, lack of self-control, etc. Yet sometimes I begin to get it, a little at a time. As if I was sitting on the living room floor with God, practicing my trust in Him in little things. And I know He smiles at me overwhelmed with love too, so proud of me for those small accomplishments and the ways in which I make progress in the deep places of my heart.

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.

A Gift of Joy by Ellen Stumbo

060910_Barbies_572_pbc
source: Tulane Publications

She claps her hands, smiles, and her eyes sparkle with excitement.

“Mom! Daddy!” she says, inviting us to clap along with her.

It doesn’t matter what we are doing, every time, every single time we find her joy irresistible. So we clap with her. In her excitement, she takes a bow and laughs. So we cheer for her and clap some more.

When her movies finish, as the credits roll and the fun music plays, we go through this routine. Sometimes I wonder if she thinks, “That was a great show, it was fun, I really enjoyed it. I feel so happy I cannot contain myself, I need to clap, cheer, and invite others to join me in this moment of joy.”

My daughter might face extra challenges because she has Down syndrome, but her ability to enjoy life and celebrate every day moments surpasses the ability I have to do the same. So she stands before me clapping, smiling, with joy radiating from her little body and I can feel that joy and excitement.

She gifts her enthusiasm about life, and it is contagious.

I sometimes hear people question if people with Down syndrome or other disabilities are contributing members to society. Maybe once I wondered the same thing. But I know better now. While their contributions might not include being doctors, scientist, or teachers, their contributions pierce through the very essence of what makes us human: love, joy, kindness, compassion, understanding, and complete acceptance. Contributions that have already touched my heart and changed my life.

So I clap and celebrate when the Barbie show is over. I delight in the little girl that takes a bow, and sometimes I bow with her too, a sign of thankfulness for the joy she brings into my life. The gratitude I have that God chose me to be her mother.

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.

Early Autism Detection: What Do Parents Need to Know?

Most doctors believe that autism can’t be detected until around age two and a half or three when the obvious withdrawn or delayed symptoms are visible. However, researchers and experts are beginning to observe symptoms at an earlier age, and possibly even as early as six months of age. Autism expert and co-founder of the Brain Balance Achievement Centers, Dr. Robert Melillo, believes there is much that can be done to stop and correct the problem when spotted at an earlier age.

Researchers have found developmental milestones to be very critical to neurological disorders. “Milestones signal that the brain is developing normally. If an infant or toddler is having a problem with motor progression, then they most likely are developing other issues, including digestion problems and immune and hormone imbalances,” says Dr. Melillo. “The best and earliest way to spot if something might be amiss is by tracking your baby’s primitive reflexes.”

As the basic necessities a newborn needs for survival, primitive reflexes give babies the instinct to breathe, feed when hungry, and squirm and cry when uncomfortable. They pave the way for early development and milestones, including rolling over at three to five months. Primitive reflexes develop in the womb and if they are faulty may result in a difficult birth, in such cases, an early brain imbalance may be present.

In babies, muscle movement prompts genes to build the brain and grow the neurons and connections that advance a newborn from one milestone to the next. The new connections inhibit primitive reflexes and set the stage for more complex movements.

“If a child doesn’t stimulate genes to build the brain, primitive reflexes remain and the brain doesn’t develop in an orderly fashion,” continues Dr. Melillo. “Children cannot leapfrog milestones, it results in the missed construction of an important skill and you can’t activate it later on.” According to Dr. Melillo, depending on how the imbalance unfolds – if step after step is missed – it could result in autism or any other neurological condition.

In his newly available book Autism: The Scientific Truth About Preventing, Diagnosing, and Treating Autism Spectrum Disorders and What Parents Can Do Now, Dr. Melillo discusses ways for parents to test for primitive reflexes in babies and how to monitor to make sure development is on track.

Do This Not That: How to Be There for the Family of a Seriously Ill Child

In 2006, Rich and Traci Maynard watched their daughter receive a heart transplant … and the transplant fail. Their 4-year-old daughter, Erika Kate, died that June. But since then, they’ve established the Erika Kate Foundation to help other families of seriously ill children like Erika financially, spiritually, and emotionally.

Here, the foundations offers some do’s and don’ts for helping families of ill children.

Everyone hears what you say.
Friends listen to what you say.
Best friends listen to what you don’t say.
Author Unknown

Don’t try to “fix” things.
DO offer solutions to small daily challenges: provide rides or entertainment for a sibling, bring a home-cooked meal, shovel snow, etc.
Don’t use cliches or try to compare your past experience to theirs.  Comparisons can minimize the pain they are experiencing.
DO be genuine in your responses and acknowledge that you don’t know what to say but want to listen and care.
Don’t attempt to cheer them up—just be there for them.  Be as supportive as you can.
DO be willing to just sit in silence. Show your support if they do want visitors.
Don’t scold, give advice, or lecture. There is no right or wrong way to experience this crisis.
DO listen and support them when they share feelings—even when feelings or behaviors seem extreme to you.
Don’t forget that their challenges may continue for weeks, months, or years past the initial crisis/diagnosis.  The experiences of families who are not in the hospital are often very challenging.
DO pray for your friend.  Prayer is a great source of encouragement and comfort.
Don’t avoid asking about the child because the answer might be difficult.  Yet, don’t probe for lots of specific information.
DO volunteer to make it possible for a parent to have alone time or date time with their spouse.
DO organize an activity in which the family can participate in order to have a break/smile.
DO give blood or become an organ donor in the child’s honor.
DO something.  Don’t wait for them to ask for a favor.

I See You by Ellen Stumbo

Angel with dirty face
source: Calhoun Abbott

Dealing with my daughter’s diagnosis of Down syndrome was difficult. There were many tears, and a broken mom shaking her fist at God pleading, “Why me?”

Yet the power of love is strong. Soon the sadness became wonder for my little girl, whom although different in some ways is perfect in the areas where I lack. There are areas in my heart where I have disabilities, yet she is so whole. Love, joy, acceptance, empathy, faith … they come to her so naturally, so effortlessly, and I am the recipient of such gifts when I need it most.

Nichole is five years old, her speech is limited, yet I often wonder if her words are messages from God, reminding me that He is here, that He sees me, and that He cares. She has a keen ability to know when I need to be encouraged.

“Mom,” Nichole grabs my face between her chubby short hands, making sure we make eye contact. Her face breaks into a smile, a smile so full of love she melts my heart and I am overtaken by emotion.

“Mom,” she says again, “You Ah Pee-Tee.”

Her words surprise me. Her message, so clear. My daughter thinks I am pretty. But it is more than that, because I have been struggling with ministry. Sometimes being a pastor’s wife is hard, ministry is difficult, and I wonder if God sees me, struggling, trying to stay afloat, and being faithful to His call.

I see you, I feel Him say, I see you.

Nichole does not let go, she keeps looking at me, smiling. It is not the first time I see His love through her eyes, or His care through her smile. And even His encouragement, through that broken speech that communicates so much to my heart.

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.

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.