Our Journey So Far
Somewhere between 15-18 months our primary physician rocked our world when out of the blue she told us that Tristen showed red flags for Autisim and gave us a referral to investigate. Only then did I begin to notice the delays that were evident, milestones missed and any regression that occurred in regards to social interaction and speech. At 22 months Tristen was diagnosed as fitting the criteria for Autism and placed in an Early Intervention Program. Every day I thank God for this referral as without it and all the great therapists involved we would not be where we are here 5 years later. Tristen is a rambunctious, sensitive, curious, loving 7.5 year old who is amazing with any electronic he can get his hands on and has a great sense of humor. He is the most amazing big brother to his 1.5 year old sister Isabella and is constantly surprising us by the love he has for her and the safety/security he makes sure to give her.
Tristen is significantly delayed in speech and language development and has echolalia which makes it extremely difficult for him to convey his wants and needs to individuals. As the caregivers for our child we are able to at some point figure out what Tristen's wants and needs are because we have been here doing this for 7.5 years but it can still be very difficult. For others his wants and needs get totally lost in translation if we are not there to interpret. It's like a very long game of charades we've become accustomed to however with his speech app Proloquo2Go we are making some gains in this area we weren't seeing much progress with before. We are able to teach Tristen new phrases and vocabulary words on a device he loves. All this being said it is still difficult for him to maintain friendships with and identify with his age like peers or participate in sports (which he loves). Tristen is very social but the speech and language delay has a barrier up that's often to complicated to get around in a timely manner with his peers and is very frustrating and at times embarrassing for him. As a whole he uses sentences and words taken from his world of video gaming, tv shows and music, which he then generalizes in parallel to his own life. Yo Gabba Gabba, Kirby, Chuggington, Angry Birds and Pixar rule our home.
Tristen has no safety skills, meaning he does not understand danger in the way a neurotypical person does. He knows danger exists but his behavior is largely impulsive and based upon immediate short term gains and sensory seeking. He is a flight risk, in a millisecond he may bolt out with absolutely no regard for his own safety or wander away. Everyday real-life experiences are overwhelming and extremely difficult due to constantly worrying about Tristen's safety and potential for sensory overload. Going to the grocery store, running an errand, shopping, playing at the playground, anything that involves leaving the house is a painstaking task where we must worry about Tristen bolting and wandering away despite our best efforts. At home is better but it can be equally difficult as he can open the doors and locks and proceed forward on his own agenda whatever it may be. He also opens the door to strangers and has no regard that this opens himself and his family to danger. In our previous home he would disappear and we'd find him in the backyard having opened and closed the back door. There have been times he's utilized the front door and gone off down the road, or started our journey to the car or on a errand on his own. Now that we live in an apartment, he has easier access to opening the doors and locks to leave, as we are unable to safe guard our apartment in the same manner we were able to in our relatives homes. There is more immediate traffic/strangers living in an apartment complex and because of his ability to open the door and leave, sleep is difficult for us, as we're always worried we will wake up and he is gone.
Tristen has a hard time self regulating and identifying the needs his body is constantly seeking. Tristen is unable to fully enjoy and benefit from certain learning experiences at the same capacity as his typically developing peers often because he is over stimulated and over whelmed by his surroundings. It may be that the lights are to bright, background noise to busy, sounds may be to loud or at the wrong pitch/key (he covers his ears or wears ear muffs). Windy days are almost always visually over stimulating to all his senses. Certain textures and appearances make eating difficult. In addition items must also be a certain brand and come in their respective easily identifiable packaging cooked the same way every time. Tristen's body often times needs deep pressure input. He often times stems, fixates on any round ball, flaps his hands when excited and makes what others may call odd noises. Tristen also has a tick disorder that is verbal and physical and most apparent when he is experiencing high anxiety. Routine is essential any deviation causes set backs and emotional distress. Meltdowns are the ultimate experience for any Autistic individual. For Tristen a meltdown consists of losing complete control screaming at the top of his lungs sobbing. He hits himself, throws items at himself, bangs his head, hurls himself in the wall or ground determined to cause himself physical pain. On occasion he may seek out another peer as well to bring to tears.
Tristen himself has difficulty with the required control needed to develop regular routine sleeping habits and patterns. At night he has a hard time getting himself to internally and physically calm down enough to fall asleep at a normal time of night and stay asleep. When Tristen is experiencing high anxiety, obsessing about something or feeling insecure he wakes up every few hours throughout the night upset and making various noises. Despite numerous attempts at getting Tristen to sleep on his own and adjust his internal clock he does not go to bed anywhere before midnight and does not sleep in his own room in his own bed. At one point we were able to have him sleep on a twin mattress in the same room at the foot of the bed but due to our recent move it does not provide him with the sense of security he needs in order to stay asleep throughout the night.
Tristen's wish is to own his very own "white dog", he tells us repeatedly daily "to go buy it, Tristen's white dog." In speech therapy he read Harry The Dirty Dog by Gene Zion and took to the idea of a white dog. We are currently working on this with him as we don't know the color of his dog, only that he will indeed get one. His love of dogs runs deep and Tristen's Nana has a dog named King that holds his heart. King is a mastiff pit bull mix and every time they are together we see nothing but positives within Tristen. He allows King to be close, gives him commands, feeds him, plays with him, loves being chased by King and genuinely cares about his well being. An Autism service dog will fulfill Tristen's wish as well as provide him with a companion that will give him unconditional love and keep him safe.
The Autism Service Dog from 4 Paws for Ability will be trained to help Tristen cope with the flip side of Autism. This amazing dog will be trained to track Tristen in the event he wanders away. Tethering with the dog will also prevent Tristen from bolting when in public. The service dog will also be trained in behavior disruption to help Tristen with the sensory/self regulation he needs and meltdowns as they occur (touch, nudge, snuggle, kisses, deep pressure). Peanut alert has the potential to save his life as well, Tristen’s allergic to peanuts and all tree nuts. Another great benefit of Tristen's service dog is the social component, we'll be able to go into the community more often (be safe) and build relationships with peers and help with communication skills.
Why 4 Paws?
Our family supports the mission of 4 Paws for Ability. 4 Paws for Ability believes service dogs should be made available to any child with a disability who wishes to have the love, companionship, and independence that are the result of service dog placement. At 4 Paws For Ability it costs $22,000 to train and place a service dog with a disabled child. However, our families engage in fundraising activities as volunteers for 4 Paws to qualify for a free service dog. Each family is asked to help raise at least $13,000. By doing this, the waiting list is only as long as it takes the person to complete their fundraising requirement. Every dollar helps and will bring us one day closer for Tristen to meet his amazing dog. THANK YOU FOR YOUR SUPPORT!!!!!
Donations can also be mailed to:
4 Paws for Ability, Inc.
253 Dayton Ave
Xenia, OH 45385
(Please include “In Honor of Tristen Chambers-Berry” on the memo line)
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!