Your dollars together can help children like Declan…
In 2017, TARC’s Children’s Services provided critical early intervention services to 747 children and in the first five months of 2018 have served 547 children (anticipating serving 750 children by December of this year). #JustABuck can make a big difference!
Your support will help us continue to provide excellent service, support and advocacy to children in Shawnee County with developmental, intellectual and related disabilities and delays. Services provided in our tiny-k program are provided at no cost to families, every dollar helps us continue to provide supports and services.
Meet Declan and his family
Kara and I were married for about 3 years when we decided to expand our family. After we found out that we would be having a little boy we started the process of getting our town-home prepped. Kara attended all of her checkups and sonograms, we opted out of the genetic testing because we knew we wanted our son no matter what, we also did not want to spend the whole pregnancy being worried about the chances of what could happen. Other than raging heartburn for 9 months Kara’s pregnancy was pretty typical.
Declan was carried to full term and in typical Declan fashion, it was easier to stay where he was, so we chose to induce a few days after our due date. The delivery went very quickly for a first-time pregnancy and, a little over an hour from start to finish, everything went off without a hitch.
Declan was born at 7 lbs. and 8 oz and 20 inches long with bright blue eyes and a red mohawk similar to my hair color, now it’s blonde like his mom. Over the next couple hours, we spent time showing off our little guy to friends and family before we settled in to our room Declan was a little cold so the nurse took him into the NICU to go under a warmer while Kara rested. We had just fallen asleep for a little bit when the nurses came in to start telling us their concerns about Declan. His oxygen levels and body temp were low and they suspected it was due to Down Syndrome and possible heart defects.
Once we got past the initial shock of what they were saying, while we were still waking up, they started talking to us about the signs they were seeing and why they thought it was Down Syndrome. I didn’t see it at first and honestly, I probably didn’t want to see it. I didn’t want there to be anything that could harm my newborn son. We got a confirmed diagnosis about a week later. There was some shock and grieving for we were not prepared for something like this and there had been no indicators throughout the whole pregnancy. Once we had time to adjust we began to learn what it meant to have a child with Down Syndrome.
The nurses at St. Francis were very helpful and supportive throughout the whole process including getting us in touch with resources like TARC. They also helped educate us on what causes Down Syndrome and eased our minds that we didn’t do anything wrong while trying to conceive or during pregnancy. Declan stayed in the NICU for two weeks due to low muscle tone and needing to strengthen his body so that he was getting enough oxygen when breathing on his own. Thankfully, Declan didn’t have any other serious medical issues that can sometimes come with Down Syndrome. His heart was fine and he did not need surgery. Once he was strong enough we were able to go home and start our life as parents.
TARC started working with us when Declan was a couple months old.
They would have come sooner if we wanted but we were still getting settled in at home and I was trying to get used to going back to work again after living in the NICU for about two weeks and adjusting to life at home with a baby. Debbie is our main contact and we see her at every visit. She introduced us to our team that includes Physical Therapy (Sarah), Speech Therapy (Verity), Assistive Technology (Seth) and we recently added Dietician (Ashleigh) to the group. The others don’t come every time but they do come regularly to help guide us and give us ideas on how to work with Declan to help him meet his milestones.
Compared to typical kids who don’t have Down Syndrome, Declan is considered to be delayed, but by our standards he has grown and learned so much. TARC has played a huge role in his growth and they helped educate us on how to be the best advocates for Declan. As with any child Declan’s future is unknown, but TARC is helping us give him the best possible foundation to build upon.
From his first day Declan did not follow a typical pattern of growth and development. He learned to roll early, but took his time learning how to crawl and walk. In true Declan form he tries to do things the easy way. TARC has provided us with so many resources, tools, and materials to help Declan learn motor skills, language skills, and just typical kid milestones. Seth built Declan a chair to help him build muscle tone and learn to sit, it was also great for playtime. I think Declan’s favorite tool is the bath chair because he loves bath time!
He also loves music and dancing and Debbie has taught us so many things we can do with music to help him learn and practice signing. Debbie and Verity have also helped immensely in coming up with ideas for feeding Declan. He’s a picky eater when it comes to texture so we have had to get creative with foods.
Everything TARC has done for us has been at no cost to us. Which is huge! We aren’t within the definition of poverty but we also certainly aren’t rich. Without TARC’s support we would have had to seek out therapy services outside our living area and with two working parents that is neither easy nor affordable. TARC also allows us to work with them on our schedule.
Right now, we see our team once every other week for the most part but we could do more or less if we thought there was a need. TARC has also been very flexible about meeting us where it is most convenient for us, sometimes daycare or home. They have also informed us of other play opportunities in the community that are specific to toddlers and children with disabilities. Being almost two, Declan has definitely entered the toddler stage. Most of the time though he is a happy, silly boy who is very curious about his surroundings (we can’t keep him out of anything anymore). His little toddler outbursts are heartbreaking, funny, and frustrating, but it just means that he is growing socially and starting to express himself. He loves music, swimming and going for a ride on his push tricycle. He’s a little different than most kids but he’s our kind of different and we wouldn’t have him any other way.
– James aka Dad