Meet Vincent. Also known as Vinny. He is a handsome 14 year old boy with a year round tan to die for, and is diagnosed with autism. His parents define him as focused, intense, perceptive, and nothing short of aware. "He's paying attention even when you think he isn't", says his mother Susan. "When he was younger and he couldn't speak I would feed him, let's say pretzels, he wouldn't pay attention to the food he would pay attention to where the rest of it was going, so that he would know where to point later on".
His mom has high hopes for his sweet side to come back, but he's a teenager, and we all know how that can go, autism or not.
Vinny reached all his milestones such as crawling and walking, but still wasn't speaking. In hindsight his mother recognized some sensory issues, especially food related. Other than that there were no red flags until he was 18 months when his younger sister was born. "He stopped looking at us, stopped coming when I called, and I thought he had typical sibling jealousy", says Susan. With busy lives and a new infant they were too busy to notice any potential concerns, but his speech was still nonexistent. He was evaluated at age 2 and was directed to a developmental pediatrician. At 26 months he was diagnosed with autism.
His father, Mike, remembers when he was evaluated. "I remember looking at this objective list of things they were looking for, and one of the things was walks on toes. He's never walked on his toes a day his life...and after they left we saw him running across the room on his toes". Over time they started to notice the stereotypical behavior. He wouldn't play with other children and would stim on ceiling fans.
After his diagnoses there was a whirlwind of emotions. His mother's optimistic outlook fueled her drive to be one of the success stories, and they were going to cure their son. For years she thumbed through blogs, stories, and therapies. Vincent has undergone diet changes, GFCF, dan protocol , hyperbaric chamber bed, and chelation. "I remember going to IEP meetings for him, and the question that I would get invariably would be what were my goals for him, and I would say that I want him to go to college and have a family". In return Susan would get unexplainable looks, nothing patronizing, just looks. In due time Susan came to grips with the reality that this was not a phase, and he wouldn't get past this.
His father's feelings during the diagnosis, although very optimistic, was disappointment. "I wanted to do the dad-son stuff...I wanted to do the stereotypical stuff, I wanted to teach him things, and I feel like I missed out on that". His disappointment slowly turned into anger and resentment towards the medical community and vaccinations. They didn't see changes until his 18 months vaccinations.
With emotions put to the side, Vinny and his father still enjoy being very active. They bike, run, jump on the trampoline, and swim. "It's not all the stuff that I expected" says Mike "but it's great stuff...you get what you get, and what you get can be awesome".
Their positive outlook and resilience to challenges can be attributed to life and experience. Mike and Susan lost a baby boy to the hands of sudden infant death syndrome (SIDS), prior to Vincent. "When that gets taken away from you, you realize that every little thing you do get is a gift. Even though he has his issues, and he is ours to love and protect". With that mindset they have developed the motto that their response is their responsibility. "We don't get to choose that Vincent has autism, but we choose how we respond".
Where there are ups, there are downs. Vincent has had his share of challenges that he was not hesitant to share with his family. Between the ages of 4 and 6 he would not sleep. "It was a couple years of just, bad life" says Mike with a smile on his face. Sleep is detrimental, and when you don't have it your life changes drastically. "In hindsight, I knew I was depressed, I just wasn't diagnosed", says Susan. Once that subsided and his hormones began to kick in so did his aggression. He would hit others and throw items across the room. It was hard for them to hear that their son was hurting his peers and therapists, and they were hesitant to put him on medication for years. "We didn't want him to be a rug and lose his personality", says Susan. With things getting worse his parents caved in and put him on medication, and were lucky to still have their son in a calm state with no side effects.
With the medication change he began to slip back into old sleep habits. His day would start at 2 am, and with his fathers love and dedication he was up with him, at least until they found the right medication to balance that out.
New habits rolled in when old ones died. Vinny began to fecal smear in the middle of the night, causing them to be up early and prepared to clean carpet and shelves. With his parents always ready with solutions they moved his room to his own personal oasis that was conducive to easy cleaning . It came equipped with tile, easy clean paint, and no toys that at one point became projectiles. They feel very fortunate to be able to accommodate and adapt to any change tossed their way.
"...you get what you get, and what you get can be awesome"
Among all the challenges Vincent has still managed to amaze his parents with his milestones. He didn't say a single word until he was 6 and a half years old. From there he started to string together words and use them appropriately. "I remember being in the airport and walking by a bathroom, and Vincent saying bathroom". Before then we would just take him to the restroom", and he was 8 years old when he appropriately requested it. Another progressive leap Vincent had was when he was afraid of rice and beans. While receiving ABA therapy at home a bucket of rice and beans were brought in. Shockingly his parents walked in to find him naked, and lying in the bucket. Other milestones include learning to read, riding a two wheeler, teaching himself how to swim, and using "yes" and "no" appropriately. There are so many milestones, but communication is the biggest for him.
Even though their journey is not over they have had a lot of help over the years. They are thankful for their friends and great neighbors who provide encouragement and love. One of their neighbors was kind enough to take their dog that Vinny didn't have the best relationship with, and would bring him by sporadically. Susan is not big into support groups because she doesn't feel like she can relate to all parents considering that everyones journey is different.
"Our response is our responsibility"
They encourage autism parents to take care of themselves because it is a long journey. Protect the marriage because it's way better to do it as a team than alone, and it's important. Get a counselor even if you don't think you need it. Having children is difficult, but a child with autism is more challenging. Aside from that you should fight for services, services they believe is difficult to come by, but fight for it.
Despite it all, Vincent has a loving support team and without his parents diligence he would not be where he is today, and without saying it I know he is thankful.