In recognition of April being Autism Awareness Month I decided to sit down and chat with the best ASD (Autism Spectrum Disorder) specialist I know, who also happens to be my best friend. Her name is Amber and she lives in Lexington with her husband Dan and their two smart, mild mannered yet witty children, Roman and Ella. Roman has Asperger Syndrome, along with a few other accompanying disorders.
I asked Amber some questions about Roman’s diagnosis and she gave me very straightforward and very honest answers, which you can read below. Her written word reminds me even more that she is a strong woman who has a supportive husband and quirky kids, and I just love them all to pieces.
Reading what Amber had to say pointed out things I often miss and forget to recognize or appreciate as a bystander. Amber’s interview answers prove to me, yet again, that a mother is a unique individual. None can feel like a mom can, talk like a mom can and fight like a mom can. Her child is her motivation and her prize for a job well done, and this particular little boy is quite the prize.
Here is a short walk through Roman’s diagnosis and how the family functions day to day, according to Amber.
What is your child’s specific ASD diagnosis?
Roman Asperger Syndrome, which is on the Autism Spectrum.
How old is your son and what grade is he in?
Roman is six years old and is in the first grade.
What kind of school does he attend?
Roman attends a regular, local elementary school that has a fantastic Autism program with an Autism specialist. He is surrounded by children like him and is taught by someone who understands his needs and can address them appropriately.
What are some of his interests?
Roman’s interests are reading, outer space and how things (nearly everything!) work. He used to be interested in cars and trains to the point of obsession, but that has subsided as of late.
What behavioral characteristics did he have when he was younger that stand out to you now?
Roman never wanted to be held or cuddled. Initially we thought ourselves lucky that we had a baby who was perfectly content to play by himself (even at three months old) and was fairly low maintenance. When he was first born he had to be swaddled very tightly with two swaddlers (regular blankets weren’t tight enough) to sleep.
He wanted to be constantly bounced in his bouncer, but the regular battery operated motor wasn’t strong enough. My husband, Dan, would put the bouncer in front of him with one foot on the front edge and bounce it fairly hard over and over for hours a night and Roman loved it. Looking back I think it was like being held and rocked without actually being touched. I now know not wanting to be touched is a common sign of ASD but then, I had no idea to even look for that in my child.
Did he have difficulty communicating at a young age? If so, how?
Roman did not start talking at what was considered a normal age, according to pediatric milestone charts, but he made himself known with signs that he made up and that we learned to recognize. He would only talk when absolutely necessary by about age two and a half. In fact, Roman would regularly go a week or more without saying a single word, not even “Mommy.” All of a sudden, at around age three, he began to talk in seven and eight word sentences. Although, he still would not start a conversation unless he needed something and couldn’t get your attention any other way.
How are his communication skills now? Have they changed?
Since going to school (and our largely ignoring his “signs” at the suggestion of his specialists) he speaks often now. He mostly asks questions or asks if his assumptions are correct. He will talk about one subject for a long time and wants to know everything about it, not stopping until you say “I don’t know” and promise to look it up with him later. He has a large vocabulary and communicates on an adult level. The only remaining tell-tale sign of his Asperger’s is that his speech has an unusual cadence to it, which is often seen in ASD.
How does your child communicate with you?
Roman alternates from talking to me as an adult to being very babyish. Once he turned five, he started wanting to cuddle and hug often, but only with people very close to him and only during his “babyish” times. He will speak in one word sentences such as “Hug!” and will flap his hands. He is often very happy during these times. We aren’t supposed to encourage him acting and communicating like this, but it’s hard to resist the request for cuddles that is so, so rare – so I rarely resist it at all!
How old was Roman when he was diagnosed?
Roman was diagnosed when he was four years old, just months before his fifth birthday. For whatever reason, the pediatricians and family physicians we had here refused to test Roman for Asperger Syndrome until he was six or seven years old. We knew in our hearts, and in our gut, something wasn’t right and we wanted answers as soon as we could get them.
We took Roman to a specialist in Alabama, which is where we are from, and had the testing done. That gave us a firm Aspergers diagnosis. Once we returned to South Carolina, we turned over the diagnosis findings to our medical providers so we could begin getting services and treatment for Roman.
What changes have been made in school since he was diagnosed? Are there special services for him?
Before getting the ASD diagnosis, Roman was having a very hard time with his elementary school for a myriad of reasons that mostly centered around his specific needs (which we had yet to identify), his behavioural and emotional outbursts, and the staff’s reactions.
Once we gained the diagnosis and set up an IEP (Individualized Education Plan), the school became even more difficult to work with. They were not equipped to help a child with ASD and instead of admitting that and working with us, they made Roman’s kindergarten year a nightmare for everyone involved. Once his kindergarten year was over, Dan and I made our way up the school board ladder, making appeal after appeal and finally got Roman placed out of district and at a school with an Autism program. Things have been much smoother since, and we’ve learned what a real IEP can do for a child who has everyone in his corner.
Are you satisfied with your school’s program and services?
Yes, very much so. His behavior has improved at an alarming rate, which has improved his quality of education. The school and his Autism specialist are very engaged with me regularly and I feel that has made a huge difference.
What do you find most challenging about raising a child with ASD?
Roman has to have everything in a certain way and is very inflexible in every way. He resists all forms of change.
How has Roman’s diagnosis changed your life?
We have had to learn to be flexible and accept his quirks; Roman has to have his cup in a certain place at home and many other idiosyncrasies. It has also changed how Dan and I overcome our anxieties to help Roman be his healthiest. We have had to force him to accept some things that are difficult for him, which causes us all a little upset at times. We know it will be worth the trouble and discomfort now since it will teach him how to react and function later in life. We want Roman to be as high functioning as possible and we know it’s our job to make sure that happens.
Do you feel like your child’s diagnosis affects your marriage?
His diagnosis never affected our marriage but it did affect our feelings about ourselves and how we felt viewed by others. Once we had a diagnosis we felt better immediately. We were sick of being considered bad parents for his behavior at ages three and four. Or it was being assumed that we were lazy or not disciplining him. Having him “labeled” was the best thing that happened for us concerning Roman. Suddenly we didn’t have to wonder if we were the problem and a whole world of resources opened up to us.
How are YOU doing? What do you do to cope day to day?
Honestly, it has been stressful raising Roman. Dan and I learn all we can about ASD and his other syndromes and we try to believe that we are doing the best that we can for him and our family. We believe that we were given this child for a reason; we are strong enough, we are capable and he was meant for us and us for him. I don’t have to cope, I just live day to day with my family as we do our best for each other.
What advice can you give to other parents raising a child with Autism/Aspergers?
Just to accept your child for who they are. Make sure you see all the good things that can come with it. Some may be extremely smart, or sweet, or organized, and it’s important to praise and appreciate those attributes.
Is there anything else important to you and your family you would like to share?
Having a child with ASD has not been the difficulty that many would think it could be. Roman’s Aspergers actually makes him a much easier child to raise; he doesn’t need constant entertainment or company, he is self sufficient and scrambles to gain knowledge on his own. The main issues we have had to address with Roman are his comorbid syndromes; ADHD (Attention Deficit Hyperactivity Disorder), SPD (Sensory Processing Disorder) and OCD (Obsessive Compulsive Disorder). And even those are manageable with patience, love and resources.
I am beyond grateful that Amber chose to share her family’s story with us. I know she hopes to continue to gain knowledge to help Roman succeed while also sharing her experiences, strength and hope with other parents of children with ASD.
If you suspect your child is on the Autism Spectrum, or you already have a diagnosis, please seek out as many resources as you can. You and your child deserve all the help and sense of community you can get obtain.
Here are a few places you could start:
South Carolina Autism Society – “For all who provide care for children and adults with autism, the Society provides information and referrals for services. The Society is also a strong advocate for state and federal legislation to provide services for South Carolinians who have autism.”
Parenting Aspergers Community – “Discover the ULTIMATE collection of Parenting help and Aspergers advice that you are ever likely to need. Whatever parenting tips, tricks and techniques that you want for helping your child with Aspergers it’s all here for you to access now.”
Bright Start – “Bright Start has a team of Early Interventionists who provide services solely to families of children on the Autism Spectrum. This team of Early Interventionists has years of experience as line therapists, 20+ years of combined in-home experience and has received training in numerous teaching techniques to help identify your child’s best learning style. ”
