RainbowsBlog

My family’s journey with Rainbows began in July 2006 when my son Jackson started at Kids Cove as a 1 year old preemie with developmental delay.  In 6 months his therapists (Rhonda, Dawna, Jana & Heather) had him caught up to his age matched peers.  He took over a typical child spot by the time he was 18 months! 

When Jackson started with Rainbows, I was 3 months pregnant with Treyton. Treyton was diagnosed in utero with a heart defect (Tetrology of Fallot) and Di George Syndrome.  Treyton was born at 32 weeks gestation.  Treyton was hospitalized 15 weeks of his first year.  He was born in Kansas City because of his heart defect.  He was in the NICU for 7 weeks (3 in KC & 4 at St. Joseph).  Treyton was hospitalized at University of
Michigan for 8 weeks and at Children’s Mercy for 3 weeks. 

During this time Jackson received amazing care from his teachers, paras, and therapists.  Jana in particular would write on Treyton’s web page about how Jackson was and that they gave him hugs and kisses daily and telling him mommy loved him.  Jana’s messages were my favorite to read.

In Treyton’s days at home he received ITS services.  Donna got us set up from NICU discharge.  Beth was instrumental in getting us financial resources and services we needed.  Ellen was great at helping to guide me on his developmental motor skills and how to give him opportunities to get stronger.  Diana is still working hard to guide us on Treyton’s nutritional needs for growth.  She was instrumental in getting his release from Children’s Mercy for failure to thrive.  She spoke with me frequently and gave advice over the phone and took over his nutritional monitoring when we left Mercy.

Suzanne was a wonderful support for my sanity through the doctor’s visits and very fussy baby on top of caring for my 2 other kids.  With all of my time away at hospitals with Treyton, Suzanne was instrumental for my oldest daughter’s understanding that she was not loved less than her baby brother nor was she less important.  Suzanne taught her about feelings, recognizing feelings and that having feelings and talking about them is okay!  She taught me the same thing.

One final ITS member that was/is my life line is Cheryl.  This woman is amazing!  She came to my house weekly and truly loved and cared for us.  She gave tons of advice and showed me hands on what best to do with Treyton (how to feed him).  She would answer my questions at ANY time and she did.  She would find the answers I needed and reassured me I was doing everything I needed to.  Even though she no longer sees Treyton, she still is more than willing to answer my questions and give advice, even on her day off.  She even took time after her husband’s surgery to come to Treyton’s swallow study.  It was hard to say good-bye to Cheryl as Treyton entered center based services in August of 2007.

At Kids Cove, Cammy worked diligently so that we could afford to put 2 boys in day care.  Stacey, Karen and Pamela are Treyton’s teachers and they fell in love with him.  He fell in love too and has NEVER cried when I leave him.  These women work hard to provide Treyton with age/developmental appropriate activities to expand his interactions and experiences.  Nurse Julie has become my best friend as we speak frequently.  She takes excellent care of him with all his meds and tube feedings.  She (as well as his teachers), have gotten to know him as well as I do and are quick to act when something isn’t right.  I trust these people with my son’s lives and am very comfortable doing so.

Treyton’s therapists (Dawna, Carrie, Heather, Jana) have helped Treyton to overcome many hurdles and significant delays.  He is now sitting by himself, reaching in all directions, grabbing things and putting them in his mouth, babbling, waving, and kissing.  These are all things I never would have imagined back in August.  His therapists monitor him closely and teach his teachers what do with him during the day to maximize his strengths in playing/developing and continually build on his abilities.  Dawna caught a shoulder anomaly that none of his endless specialists had caught in almost a year.  She was instrumental in getting us to the doctor for evaluation.  The doctor was very impressed with her find and apologetic that he missed it.

I could go on forever with all the ways Rainbows has touched my family and helped my boys to thrive.  I never question the care my boys receive at Kids Cove (special needs or typical).  I’m sorry if I forgot to mention anyone in this story, but there are so many that have helped in so many ways I would need a book to get everyone and everything in.

Thank you Rainbows for enhancing and improving the lives of my children and my family! 

Heather 

My name is Brad Russell and my son is Tyler Russell.  He was diagnosed at 13 months with cerebral palsy and we were told at the time that he may never talk or possibly never walk.  We were able to move back to Wichita from a smaller town where Tyler was born, and found out about Rainbows and got him on the waiting list when he was about 3 years old.  We are so thankful that he was able to attend the school for approximately 2 years in the mid-80’s.  Rainbows had some of the very best teachers and therapists committed to servicing special needs children,  and it was such an oasis of hope for us at a very crucial time in Tyler’s life, and also for our family.  He was able to receive early intervention and therapy at Rainbows that helped him be able to make great strides in both gross and fine motor skills, and give him a better start in life.  I am in the process of writing a book that I hope will be a source of encouragement to families.  About 6 years ago my wife Robin came home from a meeting at Tyler’s school and told me she heard a statistic that completely broke my heart.  She said that approximately 80% of couples with a special needs child get divorced, and many times it is Dad who leaves.  I had been writing a story to my kids about our life  with Tyler.  Since he had asked me many times if I was proud of him, I decided to call the story “Proud of Me?”.  The chapter titles are one or two word sentences that Tyler has said over and over and I simply put into words about how they relate to life.  I am praying that God will use it to encourage families, especially fathers, not to miss out on the blessings and strength that can come from difficulty and this certainly includes the joy and love we receive from having a special needs child.  The scripture God gave to begin this ministry to families is Mark 4:35-41, and then Mark 5:1.  He says in this passage that if we accept his invitation to get into His boat with Him as He is, we will make it to the other side with Him, no matter what the weather is like, calm or stormy.  I see this as a picture our life.  The safest place is in His boat.  Tyler has always talked to us in short sentences about life and he reminds us often that “it is a beautiful day”, and “the sun will come out after dark.”  Were it not for the fact that we are in the boat with Jesus on this trip to the other side,  we could easily be one of the families in the 80%.  Instead, because we put our hope in the Lord, He is using a circumstance that could have destroyed us to bring about a real testimony to His faithfulnes and love.   We thank Rainbows for being such an major factor in supporting us in Tyler’s early years,  and look forward to continuing to encouraging families and helping to change this tragic statistic.  Our e-mail address is robrussellbr@aol.com.   Thank you for everything.  Sincerely, Brad, Robin, Tyler, Timothy, and Emily Russell

My son was born with a rare chromosome disease.  He has what is called Mosiac Trisomy 22.  My son is blind, deaf, and is smaller in stature.  I was told in the hospital that he would never walk,  never  talk, never sit up, or even eat on his own.   For any parent that is a very scary thought.  The only thought in the back of my mind was “what in the world do I do NOW!”  Being a single parent I had no idea where to go or what to do next.  A week before we are getting ready to leave the hospital a lady from Rainbows came in to talk to me.  I gave her my phone number and she said she would would contact me when we were released from the hospital to come and do a home visit with my son.  I was so scared and was a little weary about people coming to my home to tell me more bad news about my child.  I had heard about Rainbows and how well they did working with children with disabilities so I thought what could it hurt.  My child was a little over a month old when the whole Rainbows team came to our house.  I mean we had vision, PT, OT, hearing, speech, everytype of therapy you could think of we had it in our little apartment.  My son had ITS services until he was a little over two years old.  He then started going to Kids Cove, where he is still attending today.  My son has always ate on his own (never needing a feeding tube), he sits, crawls, and almost can walk on his own.  He has a sign interperter all day long and is learning how to sign and understand sign.  He does more than any of the doctors ever dreamed he would do.  Something that Rainbows always told me was never think that your child is not able to do something.  If it weren’t for the Rainbows family I know my child would not be doing what he does today.  I can’t praise them enough!  Rainbows United is the BEST place for a child to attend - especially those who have disablilities.  Thank you so much Rainbows for all that you have done for my child!

My relationship with Rainbows began in February 2006. My son was barely two years old and during a routine well child check up, his pediatrician noticed that he wasn’t talking and that he behaved very erratically. Her suggestion was to have Rainbows evaluate him as soon as possible. I wasted no time scheduling his evaluation, because I was eager to get some answers. Two to three weeks later a team from Rainbows was at my door, ready to perform the necessary tests used to determine eligibility for services. Once it was determined that my son qualified for services, I was relieved, yet troubled by their conclusions. You see, my son has since been diagnosed with ASD.

Jerrod started at Rainbows in 1991.  We were told that he was autisc.  No one really knew what that meant back then.  Jerrod exibited different behaviors, he would sit and rock, he would flap his hands in front of his face, he was competely nonverbal.  During our three years at Rainbows we found resources to help us understand how to help Jerrod, how to deal with our frustration with our new born son, and develop a strong support system that would guide us throughout his educational experience.  My own experience with Jerrod drove me to become a social worker and a strong advocate for all children and families with special circumstances.

 I am proud to say that he has graduated from high school and recently moved into a group home setting where he is happy and well adjusted.  Jerrod and his house mates come over for a family dinner at least once a month.  Just like my other three children, Jerrod has grown into an adult, finding his own path to follow.  There is no greater accomplish for a mother with a special needs child than to see that child become the adult that you always knew that he could be.�

I grew up at Rainbows United and I can remember the time when I would go out on outings. I had a great time and when I got back to the school I had a snack and I learned about basic skills, such as tying shoes, motor skills, and phonics. That was the best time of my life at Rainbows. I went there from 1978 to 1982.

After being born 10 weeks early we were concerned that our son would struggle to keep up with his peers. Now two years old he is one of the smartest in his class. Not only can he say his ABC’s, count to ten, say his colors and sign his colors, he knows how to problem solve and he outsmarts his teachers. He is loveable and loved. I owe this success to Rainbows United, helping him grow, but also allowing him to be a kid and have fun.

The little boy you see on the pop-up add featured on the Eagle’s web site is my son Billy, a happy-go-lucky little boy who is a “Rainbows Original.” .  He had a great time and enjoyed Camp Woodchuck this past summer–we and Billy especially the young men who helped out in the classroom.  Our first connection to Rainbows was when Billy was an infant and we’ve been with Rainbows ever since. 

THANKS to the great staff and also THANKS to Mr. Koch for his generosity in allowing Rainbows to occupy the “Koch Campus” facility.  Keep up the great work!�

Over 65 young people between the ages of 5 and 21 years enjoyed typical fun and exciting camp activities at Camp Woodchuck this last summer.  From swimming, bowling, shopping, seeing movies, making mudpies, going to the zoo, picnicing and many other experiences were made possible for children with developmental disabilities through this wonderful Camp.

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