Our son Barrett is eight years old and leaves his mark on every person that he meets. Once you meet him, he brightens your world and leaves you a better person than when he found you. He is incredibly brave and so inspiring. He is loving, curious and incredibly bright. He has overcome so many hardships in his short life and he has a lifetime of hardships yet to overcome. We are hoping that the addition of a service dog will be life-changing for Barrett, helping to keep him safe, alert others if Barrett is in medical distress, improve his confidence, increase his social skills and give him a constant companion who can sooth his anxiety about the over-stimulating world around him.
Our pregnancy with Barrett was rolling along quite normally until Barrett decided he couldn’t wait to greet the world and arrived almost one month early. His early birth didn’t cause him many problems, as he was breathing well and seemed stable. Barrett was not yet done with surprises, though. He was born with a kidney disease called hydronephrosis, which affected both of Barrett’s kidneys. Barrett’s older brother Dakota had also been born with the same condition, so we were prepared to take it in stride. He was started on antibiotics and would stay on those until he was 2 ½ years old. The condition corrected itself and he did not need a surgical repair and suffers no long term kidney damage.
In addition to being informed right after his birth about his kidneys, we were also informed that Barrett was born with 2 congenital heart defects and would only live for about 3 days without medical intervention and heart surgery. Barrett was loaded into a special intensive care equipped ambulance. This ambulance contained the Guardian Angel transport team from Vanderbilt Children’s Hospital, which has cardiac and neonatal specialists that travel with him from his birth hospital to Vanderbilt for more specialized care and where he will have his heart surgery.
Barrett was born with a coarctation of the aorta, which is normally a narrowing, but in Barrett’s case it was completely malformed and his blood flow was fully blocked from getting to the lower part of his body. He would have a small duct that only stays open after birth for a few days that would bypass blood to the lower quadrants but then it would seal off and Barrett would die. Barrett also was born with a bicuspid valve instead of a tricuspid valve in his heart and so the opening of the valve looks like a ying-yang symbol with two flaps instead of the Mercedes symbol with three flaps. Barrett’s valve will work extra hard to do the work needed by the normal valve and his valve will wear out, eventually requiring open-heart surgery to do a valve replacement with a mechanical valve. Barrett had closed-heart surgery to repair the aorta, where they cut out the bad section and patched what was left of the aorta back together. Closed-heart surgery is done on a beating heart from his back through the ribs, so they can reach the aorta. He now has scar tissue that is causing a narrowing at the repair site and when his blood volume increases as he grows, that narrowing will need to be made bigger several times until he is full grown. They will do a series of balloon surgeries to put in bigger stints at the repair site to allow for increased blood volume. Barrett also has cough-variant asthma. He gets wheezy and has coughing spells, so he must endure breathing treatments at home to control this condition. Barrett also has seizures occasionally, so we are always on alert to jump into action should one occur.
Now that we have the major medical conditions noted, we will get down to why Barrett needs a service dog the most. In addition to having Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), Barrett also has a condition called Asperger’s Syndrome, which is a form of Autism. Barrett is very bright, but he has sensory perception issues that overwhelm him. The sounds, movement, colors, activity, smells, and feel of things around him can be distracting and, at time, over-stimulating to him and he has meltdowns that result in episodes of rage. These episodes are worse in public, like shopping or restaurants, where there is so many things going on to over-stimulate his mind and he shuts down. He only has the emotional and social skills of a child half his age, so he responds with behavior you might expect from a toddler.
Barrett’s autism also makes him fearless of the things that most children would be cautious of. Barrett needs someone with him constantly or he will do things that could be self-harming. Barrett wanders if you turn your back for a second and he has almost been hit by cars a couple of times. He had a near drowning incident on a summer-school field trip this past summer because he did not hear the instructions of his teacher to stay with the group and wait until he had someone with him before getting in the water. He has gotten out of our house before and we live on a busy street right near a lake and we fear he will get out and either be hit, get lost or drown. He climbs the counters at night and gorges on cookies and what ever other treats he finds. He can’t eat that way because he is a heart patient, and he has to eat healthier than the average child. We are also worried that the midnight gorging will affect his weight, which is also not good for his heart. He also falls off the counter and has gotten hurt. Due to developmental delays that affect his fine and gross motor skills, Barrett is very clumsy and falls constantly. He has broken his nose so many times that he can barely breathe through it, because he doesn’t have the senses that we have to put our hands up to protect ourselves until it is too late. We can’t surgically repair his nose until he quits falling so much and quits breaking his nose.
We hope a service dog will help soothe Barrett during episodes of rage, lessening the length of each episode, and eventually decreasing the overall number of episodes by putting his focus on the dog, not on the things all around that over-stimulate him. If he is tethered to his dog, he can’t wander, get lost, drown, or get hit by cars. If he is trying to climb countertops or do any other self-harming or destructive behavior, a service dog will try to intervene in the behavior or will bark to alert us to respond. If he wakes at night and tries to get out of the house, the dog will alert us. If he is in medical distress, the dog will alert us. If he is falling down, the dog will be trained to get under the fall and Barrett will fall safely over his back, breaking his fall instead of breaking his nose. The dog will also act as a social magnet or social bridge to bring curious people to Barrett and his dog, allowing Barrett more opportunity to use his social skills and help eliminate social isolation experienced by many people with disabilities, especially autism. This dog will be life-saving and life-changing to Barrett.
Our family has always been very private and only our closest friends and Barrett’s school were even aware we had an autistic child. It was not an easy decision to tell Barrett’s story to the world, but as parents, there is nothing you wouldn’t do to improve the quality of your child’s life and help them gain the independence and confidence they need to meet their full potential. They say it takes a village to raise a child, so we are reaching out to all of you who have taken Barrett into your hearts, as you are now our village. Please help make this dream come true for this child and this family. Maybe together we can achieve what is impossible for our family to achieve alone. We want to thank everyone who has volunteered their time to help us, and to everyone who gave so generously to provide financially towards our goal. We would also like to thank Mike Watson and crew for making and hosting this incredible website so we could share Barrett’s story. The words “thank you” hardly seems adequate to what we really feel. We appreciate all of you for helping to provide a service dog for Barrett. We are forever in your debt. Thank you.