We are the Urbanik family and this is Linken Urbanik’s story. Linken is 2 ½ years old and was born on March 29, 2014. He is a child of God, loves Mickey Mouse, Team UmiZoomi, sweet potatoes, bubble baths, playing on the Ipad, being outside, being at his Grandma Emma’s house and tight bear hugs!
Shortly after Linken was born, Dane and I were blessed enough to have Grandma Emma offer her time and love while caring for him at home so we could go back to work. Linken was such a sweet, happy baby. He never cried unless he was hungry or had a dirty diaper. In his first year he reached all of his milestones and even started saying “Mama”, “Bubba” and “Dada”. We were so proud. We were raising a strong, healthy baby.
Soon after Linken reached a year and a half, certain things started to worry me as a Mom. We would call his name when he wasn’t looking at us, but he wouldn’t turn around. It was like he didn’t even hear us or didn’t recognize his name. Then he started to walk on his tip toes. Soon after that, we never heard him talk again.
I continued to watch his development. I noticed he would flap his sweet, chubby little hands. I think when I first saw this, I tried to ignore it! I made excuses for it. I would tell myself that he only does it when he watches Mickey Mouse. This was something I couldn’t tell anyone because I was nervous. I already knew what it meant, deep down. I would stay up late at night and google “signs of autism in toddlers”. There were times I went to bed feeling better and times I went to bed hours later with a broken heart. I always held on to hope, though. I held on to the hope of all the things he was capable of doing and milestones he had reached rather than all signs pointing to Autism. I held on to the social gatherings where people would say things like, “He’s such a good baby. He is so calm and sweet.” But no one knew the repetitive behaviors, how he had become nonverbal and wasn’t responding to his name.
At this point, the biggest piece of hope I had was knowing he never had the chance to interact with any other children his age. He had never attended daycare or tried group activities and we hadn’t given him the chance. I was hoping that he was going to surprise me with his actions, play with other children and my worries would have been for nothing. So, July of 2016 he started a new daycare. God was totally in control and in the center of this whole journey we were about to start! I reached out to his teacher to asked her what she thought of Linken’s behaviors and personality. I asked her if he played with the other kids and how he acted each day. Without telling her his behaviors at home, she confirmed that he was showing signs of Autism.
I realized it was time to make an appointment and do the research that needed to be done so I could tell Dane. For months before that, I already knew in my heart that Autism was what we were facing but I needed more evidence. I knew both the pain and the denial that Dane was about to face. After all, I had already been through that.
We scheduled an appointment for an early intervention evaluation and he failed every task. At a year and half old, he could not do things like stack blocks, pick up beads, tell the difference between a dog and baby doll or place shapes in the correct spots. Because of this we were referred to a pediatric neurologist, audiologist and to have a DNA test done.
The neurologist ran a DNA test on Linken. He said that chromosome abnormalities were very rare, but wanted to ensure Linken didn’t happen to have one. Our next appointment was to have his hearing test done, which should have been a walk in the park. I just had an evaluation and I took him to his first neurologist appointment, no problem! But this appointment was different. The nurse called us back, put us in the room and asked us why we needed a hearing test done. With sweaty palms and big tears hiding behind my eyes, I told her that my son was just diagnosed with Autism and I needed to make sure his hearing was good. The pain in that sentence was horrendous. That day I kept thinking to myself, ‘God is in control. He heals and He is capable of turning every diagnosis into something beautiful.’ I kept thinking that Linken was going to fail his hearing test and this whole diagnosis of Autism was a huge mistake! We were going to walk out of there, get the tools to help our sweet boy hear again and everything would be back to normal! When the doctor read us the results, they were everything I did not want to hear. “Linken passed his hearing test. His hearing is perfect”. I left that appointment with so much worry. I cried the entire way home.
Families that have children with Autism have around a 50% chance of keeping their marriage together, yet Dane and I had a wedding date set a little less than 2 months out. We were just handed the biggest threat the Devil could have set in front of us. There was so much pain hiding inside our home. An intense amount of animosity and a huge secret that we were not ready to share with our family or friends. The thought of accepting it was not even an option in our mind. We could not talk about it together or even say the word ‘Autism’ out loud. It would start a huge argument. Ignoring the conversation was the best medicine for us. Once we were reminded of our faith, that God is in control and we are not alone, we realized we had an entire community we could reach out to. We began to reach out to our church family who started to pray and thankfully, all that anger and pain turned into peace and love.
October 2016, I got a call from Linken’s neurologist saying his DNA test results came back and confirmed that Linken had Distal Deletion of the 16th chromosome which consists of developmental delays, intellectual disability, and congenital anomalies and is also in conjunction with Epilepsy. The 16th chromosome tells the brain how to spit, swallow, chew food, talk and use fine motor skills. Deletion of the 16th chromosome is so rare that not much study has been done on it. The odds are 1:10,000 children. Therefore, our plan of action to help Linken learn these missed milestones consisted of speech therapy, occupational therapy and 40 hours of ABA therapy (Applied Behavior Analysis) a week.
Since September of 2016, Linken has been in speech and occupational therapy at home. Before he started therapy, he was achieving the milestones of an 8-month-old, although he was 2 and a half years old. In December, he was re-evaluated and were happy to hear that his milestones had reached that of a 16-month-old. Linken has started learning sign language to improve his communication and is gaining improvement with his fine motor skills so he can learn how to feed himself, brush his teeth and use his pointer finger when he plays on the iPad.
The doctors recommended that Linken have a service dog to help him develop, grow and become more social. Service dogs can help children with Autism because Autism (ASD Syndrome) is much more than a brain disorder. It not only affects capabilities; it plays a huge role in how the child or individual will feel and be encouraged to keep going and learning! We cannot wait for the day that we get to hear our sweet boy talk to us! We yearn to hear what his voice sounds like or to just hear him say “I love you”. Having a service dog around Linken while he is in speech therapy will give him encouragement and a best friend to lean on. It will give him excitement and help him achieve milestones!
Being a family of four means we have busy schedules. Dane and I try everything we can to make Linken comfortable when we are running Cristian to school, back and forth to sports, late practices, dinners and family gatherings. All of that running around can be extremely exhausting for a typical toddler, but for an Autistic toddler it can cause a huge meltdown. A constant routine is not easy to attain but we are trying our hardest to make it happen. Having a service dog will bring a sense of comfort and relieve anxiety by applying sensory seeking outbursts.
Linken is very much a sensory seeker. He enjoys feeling things that are wet, he likes deep pressure and enjoys anything that feels soft or furry. He likes to lay down while we use a soft pillow to apply our weight on top of him. His service dog will be trained to apply deep pressure and give him kisses on the cheek. Deep pressure is the body feeling squeezed, almost like a tight bear hug. The service dog will be taught to lay on Linken’s legs and apply his weight which will help him to calm down. The service dog will also be taught to give kisses on the cheek, which is also a sensory seeking relief. These duties will relieve his anxiety levels and allow him to feel at peace.
The most important task that the service dog can do is follow Linken’s scent if he ever wanders off. Some children with Autism are known for wandering. Our house is very close to a small bayou and plenty of woods. Unfortunately, Linken is very aware of how to get to the bayou. He loves the water, yet has no sense of danger. Although this is a task that we never want to put to the test, Dane and I are aware of the danger that could possibly happen one day, so we are trying to be as educated and prepared as we possibly can.
After all the seasons that we have gone through, Dane and I have agreed that it’s so much better to keep going along this journey with family and friends. We need the support because we can’t do this alone. Some days are wonderful and some days are hard, but we would not trade places with anyone! We are very aware that we cannot reach this financial goal alone. We are extremely thankful for every donation, every attendance at each fundraiser, every phone call, message, hug and all the support you continue to give us! We promise to take all of you along for the ride and be as transparent as possible through the seasons ahead. We hope that you leave with awareness and love because although children may look completely normal on the outside, you have no idea what is taking place on the inside. Autism doesn’t have a face. It only has a name.
Linken, Cristian, Brandi and Dane