Parents and Early Intervention – an impactful pair to tackle Down Syndrome!
Reviewed & Edited by: Becky DiLettuso, MSW, Executive Director
“My life changed when prenatal testing was telling me my child was not going to be perfect!”
Ashley and Bob were pregnant with their second child and received the news that no parent wants to hear. “They told us our child would never be mobile and would be extremely delayed. We were crushed! But we knew our strong faith and a supportive family would get us through this difficult time. I also knew that no one could be any better advocate for my child than me. He would not be limited and he would walk,” Ashley confidently remarked.
Christian came into the world against enormous hurdles. Not only was he born with Down Syndrome and consequently spent the first month of his life in NICU, an MRI confirmed he had suffered a stroke in utero. Additionally, the MRI documented that the stroke had completely damaged his left cerebellum, which plays an important role in motor control and coordination. Adding to these challenges was a diagnosis of torticollis which caused Christian to hold his head tipped to one side.
“It was a lot to take in, but my faith, our family support and the health care staff kept us going and moving forward against all the odds.” Upon his release from the NICU, Ashley received some very wise advice. “My doctor told me emphatically, make sure you get Early Intervention Therapy immediately to maximize his potential,” remembers Ashley.
An important role – an advocate for your child
Since his birth, Ashley has been on a mission to make sure that no other mother has to hear those words.” I feel very strongly that my son will develop at a rate for his age, not his diagnosis,” states Ashley.
After an Early Intervention evaluation, Ashley told the evaluator that she had four specific criteria that had to be met by the Early Intervention provider that would work with her son. “They would push my child, there would be no negativity, they would have an appreciation of our faith based family and finally, I wanted the best I could find. I did some research and decided on teli and could not be happier!” reflects Ashley.
Creating a valuable Early Intervention partnership
Despite the primary diagnosis of Down Syndrome, the only developmental area in which he scored below average was in gross motor skills. “We worked with a team of teli therapists to address his issues.
Melissa Winzek was our teli Physical Therapist who would incorporate therapy into our daily routine and suggest assignments that we could do with Christian around the house. Without her expertise and hard work I truly feel he would not be the super star is he today. I can’t imagine where my son’s gross motor would be without her, ” reflects Ashley. “Our older son Ryanmichael, who is six, also plays a role in Christian’s therapy, pushing him as only an older brother could!”
Kim Morrow, a teli Developmental Therapist made a particular impact on Ashley as she recalls something that Kim shared with her that really opened her eyes. “Kim was working with Christian and I remember saying to her that I just want him to run and play like the other kids. I will always remember her response, “Ashley, please understand that if he can’t move like a typical 6-month old, he can’t learn like a 6 month old. Movement really enables exploration and learning,” reflects Ashley. This perspective really provided Ashley with even more motivation to insure she would continue to push Christian.
Most recently, Christian has begun to receive visits from Jackie Svitek, a teli Occupational Therapist. Jackie has helped to continue to keep Christian on track for development for his age, by incorporating therapy into his typical routines. “Just tweaking an activity a bit, like breaking favorite snacks into small pieces to make sure that he has the pincer grasp mastered or having him stand to color, we can develop other strengths,” remarks Jackie. “Ashley and I have worked to reinforce similar activities her extended family when they are visiting or babysitting. As Christian and Ryanmichael play together, he includes some technique or exercise that he knows will help his brother continue to improve.”
Fast forward to today, 2 years later
Christian is now eating well and has scored average or above average in all areas except gross motor skills. “Our doctors are amazed by his progress! He mastered the potty at 10 months, which in most children with Down Syndrome may not happen until a much later age,” notes Ashley. “But then Christian is far from typical! He has developed quite a personality!”
And his progress doesn’t end there as a proud mother reports ” Our teli therapists cannot believe how is able to crawl. He also talks and has a 15-20 word vocabulary including 2 word phrases which Bob and I are thrilled to hear like “I want Mama, ” reflects Ashley. “He is also pulling up to stand and recognizing everyday objects and placing them in appropriate places, all things that are moving him along the developmental milestone timeline.”
Building on success… creating a future!
It has been a difficult for Ashley and Christian, both prior to and after his birth. But Ashley reflects on the importance of faith, being an advocate for your child and partnering with an Early Intervention provider that shares your vision for your child.” I can’t say enough about the teli staff… I love them! I can be difficult because I have pretty high expectations for them and my child. I can say they have addressed all of my concerns and helped Christian make exciting progress,” says Ashley,”I think it is imperative that parents are true partners with their Early Intervention provider to help their child maximize their potential. I have found a true partner in teli!”