Meet Robert, Susan, and their son Adrian. Between MRIs, genetic testing, and endless back-and-forth with doctors, the journey of Adrian's autism and cerebral palsy diagnoses was emotionally taxing. But Susan shares how unconditional love and support for “Perfect Adrian” guided their family through thick and thin.
Tell us about yourself.
We are Susan (53), Robert (62), and Adrian Harrison (22) and Penelope Furrbottom (cat, 10 years old, but she doesn’t usually share her age). Robert & I have been married for 29 years. We got married 9 months after we met.
Adrian has autism and cerebral palsy; he's legally blind without glasses, non verbal, intellectually disabled and is the “Perfect Adrian” and we love him unconditionally.
What was the journey of adrian's autism diagnosis? Is there anything that you know now that you wish you knew then?
We went through infertility and after 7 years, we became a family through adoption. We wanted to do a domestic adoption so our child as an adult would be able to search if he or she chose to. Adrian was five days old when we got the call. When we met Adrian, we fell in love with him instantly. He was meant to be our child.
There was a family in our neighborhood who had a baby a week older than Adrian. It seemed that the minute their baby turned 3 months old he was doing many things and Adrian was like sleeping beauty. I would bring up my concerns to the pediatrician and she would be like, “He's fine” or “He’s a boy” or “He’s a big baby.” I just thought it was me, that I wasn’t a good mother, that I wasn’t buying the right toys, etc.
At about 10 months, there was an article that said if your baby is still not sitting or near to sitting – talk to your doctor. It went from Adrian is a fine baby to maybe he had a stroke in utero and we need to see a Neurologist.
Adrian saw a Neurologist, who looked at Adrian and said he’s got dysmorphic features, low set ears, and is missing lines in his palms which means he did not do complex hand movements in utero, and his head circumference is below the chart. They took blood work for genetic testing. Adrian had an MRI at 11 months and the doctor called one day later and said Adrian had “Dysgenesis of the Corpus Callosum, Mild cerebellar hypoplasia and Borderline undermyelination." That he needed to wait for the genetic tests to come back and then he would sit down and talk about what it means in two months. It was our summer from hell waiting. The genetic tests came back negative. The doctor felt Adrian had an unknown syndrome but genetics hadn’t caught up yet. He said the fact that Adrian had three brain issues going on with no reason why, except that it happened somewhere about 8 weeks in utero. The doctor said Adrian could stay the same, he could regress, or he could progress somewhat and that he would see Adrian again in a few months.
When the MRI diagnosis came in, Adrian’s first pediatrician called and said “Parenthood is like a rollercoaster.” It was more like someone pushed us off a cliff without a parachute. It went from your baby is fine to maybe your baby had a stroke in utero to the neurologist not even having an answer on Adrian’s future. Then she called again and asked if the adoption had gone through and that was the last time we spoke to her. Adrian was not a toaster oven that you can return to the store because it was not perfect. Adrian was a living, breathing person and he needed our unconditional love and support. Adrian was Adrian from the moment he was born and now it is our job to understand Adrian and help him progress to the best of his ability.
Shortly after his first diagnosis, I was out with Adrian and came across a bib that said “I’m Purrfect.” We still have the bib in a drawer.
The week we saw the neurologist to discuss Adrian’s results I was working with Adrian on sitting. I knew waiting for the early intervention P.T. who only came twice a week was not going to be enough and I needed to work with Adrian daily. Adrian was laying on the floor and we were looking at each other and it seemed that Adrian’s eyes were saying, “If you work hard, I will work hard too.” So I said to Adrian, “If you work hard, I will work hard too.” It was our promise to each other.
Robert was running and doing races at that time. He said if Adrian never walked that they would do races, like Dick Hoyt and his son Rick.
We could tell early on, even before Adrian's first diagnosis, that Adrian had autistic like tendencies (the hand movements especially). When I brought it up to doctors, it was either early on in doctors' understanding autism at that time, or they thought we had too much on our plate with Adrian and ignored it. It didn’t surprise or upset us at all when Adrian was put on the autism spectrum about 5 years of age. It was more like, “Yeah we knew.” When Adrian was about 15 years old he started a weird tick-like arm and head movement. His pediatrician thought he had “Pandas Syndrome.” So we went to the Kennedy Krieger Institute. It was very hard to get an EEG reading (an electrophysiological monitoring method used to detect abnormalities related to electrical activity of the brain) on Adrian but they did find out that the front part of Adrian’s brain is slow. That was like, “What else is new?”
What personal challenges have you faced while raising your son?
When your child is diagnosed with Autism or any disability it seems there is about a three year process to hitting the ground on your feet after you have been thrown off a cliff without a parachute. The first year you are scared and worried and cry often. The second year you do not cry as much, but at a birthday, holidays, the anniversary of your child’s diagnosis, another kid your child’s age or younger doing much more than your child, what you have been working on with your child and you think they got it and all of a sudden they don’t and you're back at square one, or you're just physically and emotionally tired. Then all of a sudden in the third year you realize that you are not crying and life is ok and you are so proud of how hard your child works to accomplish anything and they are the perfect self. You find your voice to be the best advocate you can be for your child and follow your gut instincts.
We don't hide Adrian at home, we take him everywhere. He has a right to be part of society.
Most people are kind to Adrian. We have even had some people over the years try to give Adrian a few dollars. People at places where we usually go to are very kind to Adrian because they know him and if Adrian is not with me they ask where he is.
We have had people who don’t even want to get on the elevator with Adrian, or seemed scared of him. Once a woman in Macy’s said Adrian shouldn’t even be there. Sometimes Adrian makes little kids cry because they don’t understand him and get scared. Sometimes you come across nasty people, and it's hard to understand that anyone would be mean to a person with disabilities on purpose. Adrian loves everyone. Everyone is equal to him. We can say that we know what Adrian’s MRI says, but what do these mean people's MRI say?
Of course, like every family dealing with the school system for appropriate schools, therapy times/amounts, etc., it seems like a never ending battle sometimes. But as they say, the “Squeaky wheel gets the oil” and “You get more bees with honey.” Don’t be afraid to call and call again, even if it means calling the Superintendent's office. Most teachers and therapists want to help your child and if not, you call for a meeting if it’s really bad and it can’t be resolved any other way.
What resources or support systems have been most valuable to you as a parent?
Robert and I love each other and we love Adrian. We understand that we need to work together, stay on the same page, be on the same path together and the focus is our family.
Most of our families have been supportive. My uncle would proofread any letters pertaining to Adrian for me. The two people in our family who treated Adrian like he had three heads are no longer part of our life. Adrian is a person and he deserves love and respect. In the beginning, some people who we thought were our friends, we found out were not. That's ok, we want real friends. And the people in our life now are always kind to Adrian.
Our friend/sitter, Angie, has been a great part of our life since Adrian was five. We consider her part of our family. Andrea, who was Adrian's Autism Waiver IISS person, we now consider a friend and family. Adrian's Best Buddy from high school, Garrett, still keeps in contact. Even Garrett’s family is nice to Adrian. They are now part of our family too. It’s amazing how Adrian can bring love/family into his life.
What are the proudest or most eye-opening moments you have had while raising a child on the spectrum?
We are amazed at the wonderful people over the years that choose to work with and help children and adults with disabilities. And they don’t get paid enough and they still do it.
Adrian is our reality. We don’t know what it's like to have a typical child. Sometimes people might say "we're so sorry for you," but we're not sorry. Adrian will never drink and drive, hurt someone's feelings, or kill someone. Life is good to Adrian. He's happy in this moment. He will never worry about the world and the horrors in it. He will never understand death. He lives in the now. Life doesn’t get any better than watching cars, buses and fire engines on Rockville Pike.
There are families out there dealing with many more issues than us, some potentially life threatening, and we are grateful for what we have to deal with. There are families out there who had a typical child/adult who got into an accident, etc. and became disabled. And they live with that memory in the back of their minds. Adrian was never anyone but Adrian. Like Adrian, we have to be grateful and be happy in the now. Life is not a dress rehearsal. It's how you deal with the hand you’ve been dealt.
What advice do you have for parents who have a child with autism, particularly as their son or daughter nears adulthood?
Adrian is a summer baby. So when we realized that he wouldn’t get that extra school year, it was shocking and scary. Then you have to put it in perspective that in reality, school is about 21 to 22 years, but the rest if your child/adult’s life if a whole lot longer and the schooling is a very small segment of their lives.
We become so focused on the schooling years that we don’t think about what we want in the future for us and where we want to be in our retirement. If you are lucky enough to get your child into an adult day program or whatever else you want for your child and they get funding from the state, then you are stuck in that state. The funding is not going to follow your adult child if you move them out of the state. The states are not obligated to do anything for your adult child. When your child is in the school system, there are laws and the school have to take care of your child even if you move. So if you want to live somewhere else in the future and your child is in the school system, make the move now.
Use your iPhone/cell phone to record your child working on skills at home to take to an IEP meeting, show therapist, doctors, etc.
Sometimes you have to just take a breath and let things slide when you can’t change things or don’t have the control of the situation. Adrian is in adult services now. He has had some afternoon Metro Access accidents on the way home. This is not a private ride service. Metro Access might be picking up and dropping off people before Adrian gets home.
You can also see Adrian on YouTube. We don’t know how to work YouTube (nor did we realize how many Adrian Harrison’s there are on YouTube or that the song “You The Man,” would come out and everyone would be using that). But we would say “Adrian you the man” since he was diagnosed and while we would be working with him, so you can find him at — Adrian Harrison or Adrian you the man, or watch our series on toilet training: