Proud Moments™ Kyra, Dylan, Tyler and Alex

PROUD MOMENTS™

Proud Moments can be any time that you have been extremely proud of your child with special needs. It can be when they are giving it their all or reaching a milestone. You may feel you can only share your excitement or enthusiasm with someone that will really understand. We certainly understand. We are encouraging you to please share a proud moment with us for this next issue!

Standing Member of the Class of 2010

One of the things we learn as the parents of children with special needs, is that even more than our other children OR more so than those who have children who aren’t like ours; our job as a parent NEVER ends, BECAUSE our children have Special Needs. There are continually small moments and milestones that culminate as tiny miracles and serve to enrich us over a lifetime. Moments we savor, and serve to strengthen and carry us through the challenges. I will say that through the last 22 years, there have been many moments that caused me to beam with great pride. I have smiled and cried over the accomplishments of my now, all but grown up child, Kyra.

In spite of many challenges, she has been a trooper throughout her life, overcoming GREAT odds and I fully expect her to continue this trend through her adult years. Undaunted, she has tried and accomplished things that many would gasp and all but faint, watching her try to do. She has participated in a list of activities that even a typical child might envy, including traveling across the country on a bus from the south-east coast to the north-west coast. She has ridden as a passenger on the back of a motorcycle, among other things. Today, in spite of guarded often unfavorable predictions, she is extremely independent on a personal level and as her lengthy educational path is winding down to a close, we are preparing for the next steps in her life towards independence: which in our world, includes assisted employment.

With multiple disabilities affecting movement, speech and academic development, the road hasn’t been an easy one. But, in a few weeks, she will dawn a traditional cap and gown in her school colors, then, with the rest of her graduating class, she will WALK the public path to accept her Special Education Diploma. It’s the WALK part that is my proudest moment. WALKING, in andof  itself, is an act of independence. Symbolically, it signifies a right of passage to the world of adulthood for all children. But, for Kyra, it’s that the road ahead is one of standing without support…moving on her own power…a HOPE towards autonomy. She will accomplish this feat with a relatively new piece of equipment, to offer her support on her journey, something realistically, that she will always have need of to navigate the life which lies ahead. But, she isn’t being carried on some-one’s shoulder and she isn’t doing it sitting down in her familiar chair, equipped with wheels and a joy stick.  She will WALK. Then, with the rest of all her classmates she will toss her cap high into the air and shout HOORAY, it’s OVER (as she has become so fond of saying the last several months)!!  A wonderous moment for a young woman who was fully expected to engage life lying down. My daughter, a standing member of the Class of 2010…I can not express the PRIDE…..

~ Karen Ballew Echols
 The Kyra Project

Related: When Mom Crosses the Finish Line

Outdoors is Boring?

A couple of weeks ago at the park, my down syndrome (DS) 10.5 year old saw a boy on the swings being bored.  Ask the boy “what is wrong?” I said.  The boy says, “being outdoors is boring”. He would rather be inside playing video games.  My child says “how can you say that? It is so much fun outdoors. You can bike, you can play at the park, you can play in the creek, you can do so many things outside”.  Yes, you can have fun doing video games but being outside, there is so much more to do. Come, I will race you to the top of the space net.  And off they go.We used to hear this from our son now he is telling others.

                                                               ~Ruby Pearl Hillerts Olsen

I think he wants you?

When my grandson, Dylan was not quite 1 yr old, (he is now 2!) he had a doctor’s appointment at the children’s hospital. For the first year of his life the only noise he made was crying, he cried for one year straight! When we got to the hospital, I took him out of the car and was carrying him. He started whining and acting like if he could fidget he would have, but movement at the time was painful and difficult. It was a different act for him. I told my daughter, “if I didn’t know better, I think that he wants you.” So she took him, and he relaxed, looked up at her, (at this point we were told he could not see) looked right into her eyes and said “Ma”, smiled and laid in her arms with great love!

My daughter giggled with such delight to hear him say “Ma” and I cried my eyes out! What a special moment that was!

~ Kimberly Burch

“Little Superman”

On March 14, 2010 we were told my son Tyler (3 years old with down syndrome) had leukemia. The most awful day in our lives! He is a trooper. We call him our Little Superman. We spent almost 2 weeks in the hospital. He had a blood transfusion, bone marrow biopsy, and a spinal tap. This is something no little kid or anybody should have to go through. But, our Little Superman did all of these,  which was hard to watch. But as of March 29, 2010 we got the good news that he is in remission!! I could not be any prouder than the day he was born. My heart is jumping out of my chest. But I know he still has a fight to stay in remission. That is a big goal to meet and to remain in remission.

                                                                                                              ~Linda Rock

Raising his “Voice”

I was at my son’s school talking with his teacher and she was showing me what he does in a typical day.  My son, Alex, is 6 years old and in Kindergarten.  He came up to us and pushed the button on his “talk box” that said  “I want to listen to music”. I was talking to his teacher and wanted to finish what I was saying, but, when he realized that we didn’t acknowledge him, he turned the volume up all the way and pushed the button again.  I stopped right away, I was so proud of him.  There probably aren’t many parents out there that would be moved to tears when their child raises their “voice” to them, but it was one of the best moments of my life.

~Laura Sneddon

Related: Having a Voice!

Read More Proud Moments

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