I want to share with you two stories. Both that follow their own paths towards the same goal of finding the best care for our children. One of them is my own and the other is not. This first story is actually my blog-partner Angie’s story who has given me permission to tell it. This story begins before her child was ever born on the day she went in to get a routine ultrasound.
On this day Angie went to get the ultrasound to see what the sex of her baby was, which is one of the most exciting days you have as a Mom, but then she was given a few heart breaking surprises. She was told her child was a boy, but that his case was severe and the doctor had told her then and there in the room that he didn’t believe he was going to make it. She left that day watching the other Moms and their smiling faces, remembering moments before how she had felt the exact same way, and had to tell her husband who was excitedly waiting with a big smile what she was just told from the doctor.
Her son has what was called CDH – Congenital Diaphragmatic Hernia, where there is no diaphragm and the organs are in the chest cavity; because of this he also only had one working lung. In addition to the CDH he also had heart problems, one working heart valve and multiple holes in his heart. She was prepped until the day she was to give birth to prepare for him not to survive…
.. but our Robbie surprised everyone.
Robbie was awake after he was born which actually led the nurses to screaming and scrambling. I cannot imagine in that moment what she must have felt. A cry of release after months of fear, the realization that her child is alive despite all odds! How empowering it must have been to see him, to hear his cry and know he made it.
For the first few years of Robbie’s life he had an IEP (Individual Education Plan) and First Steps. At 7mo old he couldn’t roll over or sit up on his own due to the intense hospital atmosphere. Two months after he went home for the first time he broke his arm because of the lack of physical movement, his bones didn’t have the strength to keep up. He went through intense Physical and Occupational Therapy and having had a tracheotomy and being unable to speak, he also underwent specialized Speech Therapy and sign language. Robbie had to learn how to eat since he was on a feeding tube for the first four months of his life and having a tracheotomy as well as congenital diaphragmatic hernia, he still has some difficulties doing basic things. Alongside these things, Angie had to be taught the basic tools of being an in-home nurse. Had spent the first years of her son’s life waking up every 2 hours, 24 hours a day 7 days a week to check his breathing tubes. She’s had to bring her son back to life a few times with her husband. Robbie has undergone 7 surgeries in 6 years and through it all she has nothing but gratitude, faith and an unconditional amount of love.
No one was sure how the next few days or months would go… but the miracle that is Robbie has surpassed all odds against him through the love of his family. They are currently waiting to see how well his heart is doing as he grows and we are all hoping for the best! He is a beautiful and amazing six year old boy that I am so proud to be considered his ‘Aunt’ Manda.
|Angie & Robbie 2012|
Here is my story, about my beautiful little Cars loving tot and how we came to find ourselves with physical therapists, occupational therapists and speech-language pathologists of our own.
I always felt there was something unique about my son since he was little, but all parents feel that. When he started memorizing strings of numbers at 1 and remembering scripts to Sesame Street, I figured maybe I had a genius on my hands – even if he didn’t want to get the whole ‘conversation’ thing down. However, it wasn’t until he turned 3 that my husband and I finally decided that as remarkable as his memory was, there were certainly delays in other areas and we needed to find a place that would work with us to help him better communicate.
The first time I went seeking help was disheartening. I had all these people feeling sorry for me and I didn’t understand why. They were apologizing and telling me that there are other parents going through similar things, but I was confused because my son was the joy of my life and I didn’t feel he was at all a burden. I certainly wasn’t feeling sorry for myself, we were actually the opposite! Our son was amazing and beautiful, healthy and happy; he’s actually the happiest kid I have ever – ever – known in my entire life, I was blessed! So… all of the talk about ‘fixing’ things that I didn’t think were broken made us clam up and for another year I stopped looking for help.
Therapy is Crucial to a Child’s Development and Learning:
A child with most likely require therapy to help them with the skills of everyday living. This is especially critical during the first few years of life when a child is growing and learning so many new skills. Physical Therapy will help with mobility by strengthening and stretching their muscles. Occupational Therapy will work on activities of daily living such as dressing, feeding and sensory integration. Speech Therapy will help a child learn how to talk or use other means of communication by utilizing augmentative devices. All of these services will incorporate play to encourage a child to learn and grow in a fun and engaging environment.
Early Intervention is a government sponsored program for children birth to three years of age who qualify for these special services. These services can be provided in a therapy center or in the comfort of a child’s home.
I then was introduced to something remarkable – Early Education/Intervention. When we moved to our new home there was an Early Education building nearby and one day my son and I ventured into it and it has changed our life since. I met with multiple teachers and administration people who all loved my son. They smiled and cheered for him, introduced themselves and told him all about how he would love it there so much. Although they weren’t the people that would eventually be the ones to help my son along his journey, it was the immediate positive and compassionate atmosphere that strengthened my heart.
|My tot with the hat he made at school. He cut two pieces all by himself!|
2 short months later and we walked into the door with my son’s Individual Education Plan, complete with Speech-Language, Cognitive and Occupational / Physical therapists. 3 1/2 months later and my son can say “I love you” without prompting, he can climb ladders like other kids, use scissors and most importantly – he can play with other children.
That is my miracle.
My tips for parents with children who have developmental delays is to:
- Keep a journal of your child’s milestones, medications, doctors appointments, concerns and questions. Take it with you to all of your appointments!
- Play a part in their education. You know your child better than anyone else in regards to how they learn, how they best process things and how to get through to them. Be a part of the process, get involved at home, in their school and in their therapy! Work with the teachers and special therapists, if your child cannot communicate to you about their day – ask them to write down the progress! Find out what lessons you can bring home and apply them!
- Try and then try and then try again…
The Hospital for Special Surgery, located in New York City, is a world leader in orthopedics, rheumatology and rehabilitation. They have also recently opened the CA Technologies Rehabilitation Center at the Children’s Pavilion providing comprehensive, individualized rehabilitation for both inpatients and outpatients from birth to 21 years. It’s staff is multidisciplinary staff includes physical therapists, occupational therapists, and speech-language pathologists. The new center evaluates and treats children with neurological, orthopedic, rheumatic, congenital, and sensory integration disorders.
So if you are in either of our shoes, take a moment to visit and see what they have to offer. You can find further information on their Facebook Page and read about other experiences, share your own experience and connect with like-minded people that are (like Angie and I) following individual pathways along the same journey towards treatment for our sons. And/or follow @HSpecialSurgery on Twitter.
I wrote this review while participating in a blog tour by Mom Central Consulting on behalf of Hospital for Special Surgery. A small donation to a charity of my choice was made in my name as a thank you for participating. You should consult with your physician or other health care provider before beginning any rehabilitation/therapy, sports training, or exercise program.