Hello! I am so glad you found Linken’s personal website where we will share his Make a Dream Come True story. If we have not met personally or you happened upon Linken’s story, let me introduce you to our sweet boy.
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 Linken at home so we could go back to work. Linken was such a sweet and happy baby. He never cried unless he was hungry or had a dirty diaper. He was always so content; he just went with the flow of things. In his first year he reached all of his milestones and even started saying “Mama”, “Bubba” and “Dadda”. 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 and he wouldn’t turn around. It was like he didn’t even hear us or didn’t recognize his name was Linken. 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 an excuse for it. I would tell myself, “He only does it when he is watching Mickey Mouse and gets really excited..I mean it’s not like he does it all day long.” This was something I was sure not to tell anyone. I already knew what it meant deep down inside of my soul. 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. 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. He is so sweet. He isn’t scared of anyone.” Yet deep down, I did not tell anyone the things that he does at home, 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 never had the chance to attend daycare or try group activities and we hadn’t even given him the chance. I was hoping that he was going to surprise me with his actions, play with all the kids, love daycare and all my worries would have been for nothing. July 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 ask 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.
At that point, I decided to make an appointment and do all the research that I needed to do in order to tell Dane. For months before that, I already knew in my heart that autism was what we were facing but I needed to see more. 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 stack blocks. He could not pick up a bead with his fingers. He jumped and hummed. He did not know the difference between a dog and a baby doll. He could not place shapes in the right spot. The list went on and on. Our next appointment was with a pediatric neurologist where he would take more notes on what Linken could and could not do. He then referred us to have a hearing test done and he also did a DNA test.
His doctor said that it was very rare that any chromosome abnormalities come back from these tests but it would be good just to check it off our list. I remember taking in so much information from that appointment that my heard hurt. This whole journey was still fresh to us. All we knew was that Linken did have some type of Autism disorder but we had very little answers. We had no clue what we were doing or where our future was headed. Our next appointment was to have his hearing test done which should have been a walk in the park. I mean I just did an evaluation and I took him to his first neurologist appointment, no problem! But this appointment was different. The nurse called us back, got us in the room and then she asked us why we needed a hearing test done, with sweaty palms and big tears hiding behind my eyes I told her “We were just diagnosed with Autism and we need to make sure his hearing is 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 had so much faith that Linken was going to fail his hearing test and this whole diagnosis with Autism was going to be a huge mistake! We were going to walk out of there and I was going to call Dane and tell him that this was a misdiagnosis because Linken could not hear. Then we would get the tools to help our sweet boy hear again and everything be back to normal!
After the test, the nurse took us back to our room and went to get the doctor to read us the results. The results were everything I did not want to hear. “Linken passed his hearing test. His hearing is perfect”, he said. I left that appointment with so much misery. I cried the entire way home thinking “How could you do this to me, God? Why would you pick me out of everyone else out there? What did I do to deserve this?” So many tears ran down my face as I drove home. I had so much anger inside of me.
Families that have children with Autism have about a 50% chance of staying married, 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 all of that anger and pain turned into peace and love.
October 2016 I got a call from Linken’s neurologist, 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. Basically all of that means that the 16th chromosome tells the brain how to spit, swallow, chew your food, talk, use your fine motor skills, etc. Deletion of the 16th chromosome is so rare that not much study has been done on it, it happens to every 1 in 10,000 kids. Our plan of action to help Linken learn all of these missed milestones consists of speech therapy, occupational therapy and 40 hrs. 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 at 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 in order to communicate 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.
So now you’re probably wondering how a service dog would fit in. Great question!
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 keep 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. Maybe one day he will have so much excitement in his sweet heart that he will tell his dog to roll over or “go get it boy!”…All of these small words are HUGE milestones!
Linken also suffers from chronic Asthma as well as a very low immune system, which means during the winter time we are stuck inside doing breathing treatments every 4 hrs. We try everything we can to keep him eating when he is sick so we can avoid the hospital. Being a family of four also brings on busy schedules. Dane and I try everything we can to allow Linken to feel comfortable when we are running Cristian to school, back and forth to sports, late practices, late dinners and family gatherings. Although all of that running around can be extremely exhausting for a “normal” toddler sometimes it will cause for a huge meltdown with a toddler that suffers from Autism. A constant routine is not easy to come by when life is this busy. Having a service dog will bring a sense of comfort and relieve anxiety by applying sensory seeking outbursts. Linken’s service dog will be trained to apply deep pressure and give him kisses on the cheek.
I know what you’re thinking, what does she mean by deep pressure and how would a kiss from a dog calm down a screaming toddler? “Deep pressure” is the body feeling squeezed almost like a tight bear hug except in Linken’s world he likes to lay down and we use to a soft pillow to apply our weight on top of him. The service dog will be taught to lay on Linken’s legs and apply all of his weight so Linken can get relief and his body will allow him to calm down. The service dog will also be taught to give kisses on the cheek (lick his cheek) this is also a sensory seeking relief which can calm down his anxiety levels and allow him to feel at peace. The feeling of the dogs wet tongue is what his body will feel, Linken is very much a sensory seeker he enjoys feelings things that are wet, he likes deep pressure, he enjoys anything that feels soft or fury…its basically takes you back to your 5 senses!
Out of all the duties Linken’s service dog will train to learn the one that stands out the most, the one that caught our attention to move forward and put in an application for Linken is that his service dog will be trained to follow Linken’s scent if he ever wanders off. Some children that suffer with autism are known for “wandering” or you may hear that they are “runners”. Our house is very close to a small bayou and plenty of woods and unfortunately when we do open the front door Linken is very aware of how to get to the bayou (remember when I told you he loves bubble baths?). 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 very aware of the side effects that could possibly happen one day which is why we want to be as educated and prepared as we possibly can.
If you are still reading and have stuck through this long story with me. Thank You! After all the seasons that we have gone through Dane and I have agreed that it is so much better to keep going along this journey with family and friends. We need the support, we can’t do this alone. Some days are great and some days are rough…but we would not trade places with anyone to be “normal”! 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, every message, every hug and all the support all of you will 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 of us, we hope that you leave with awareness and love because although children may look “normal” on the outside you have no idea what is taking place on the inside. Autsim has no certain look on the outside.
It costs at least $40,000 to specially train a dog for Linken. Families cover only a portion of that cost, a fee of $17,000. We are fundraising to help cover the fee required to provide Linken with a life-changing service dog. Donations in support of Linken should be made directly to 4 Paws for Ability – be sure to write Linken Urbanik on the memo line. Mail checks to:
4 Paws for Ability
In Honor of Linken Urbanik
253 Dayton Ave.
Xenia, Ohio, 45385.
If you wish to make an online donation, the website is www.4pawsforability.org/donate-now . Include Linken’s name in the “instructions to merchant” through PayPal. You may also call to make a credit card donation over the phone at (937) 374-0385 – Monday thru Friday 9AM to 4PM EST.
Linken, Cristian, Brandi and Dane