Autism Awareness Month: A Roses Q&A

One day, around this time last year, I was on a CTA bus where a boy and his mother were a few seats in front of me.  The boy was screaming - a lot.  And, I was thinking "Is there nothing this mother can do to shut him up already?"

When I finally got home, I checked Facebook and, in my news feed, there was this -
The next time you see a child screaming and throwing a tantrum, do not assume the child is spoiled, out of control and that the parents have no control over their child. The child could have autism.

Needless to say, it made me think.  And, this year, to honor National Autism Month and to educate myself and readers, I'm proud to do a Roses Q&A with Lori Salzano, the author of the above post and my high school friend.

Q: Ok, Lori, so first, you're living in Oklahoma? How did two nice girls from Belleville, New Jersey end up in Chicago and Oklahoma? Well, I know my reason (hubs). What about you?

A: Husband too. Well, ex-husband! I moved to Lawton/Ft. Sill in September 2006 when Sebastian was 8 1/2 months old. I was married to a soldier for 13 years and we usually moved to a different base every 2 years or so. We divorced in 2010 and I stayed in Oklahoma after our divorce because of Sebastian's autism diagnosis. At the age of 3, he was enrolled in an autistic/developmental delayed program at a school located on Ft. Sill and I didn't want to remove him from his school.  He enjoyed it so much. As much as I wanted to move back to New Jersey, my children and their needs come first.

Q: So, you have three beautiful kids - Victoria, Sebastian and baby Julian. Sebastian is now 6 years old.  How would you describe him? What kind of kid is he?

A: Sebastian is a very energetic boy, extremely smart and LOVES to count! He's obsessed with numbers. He also loves the band Coldplay. Fix You is his favorite song. Thank God for Chris Martin!!! And he loves trains. He has over 100 Thomas and Friends trains. He can tell you all their names and what kind of a train they are, if they're fast, slow, a steam engine or a diesel fuel. He's not into sports, however he does love to run. He refers to himself as Superfast.

Q: Nice! I love to run too. But I'm sure compared to him I'm Superslow. So, I know Sebastian was diagnosed with high-functioning autism at 15 months. You already had Victoria and knew how she behaved at 15 months. Were there certain behaviors that alerted you? How did the diagnosis come about? What should first time moms know?

A: Well, when Sebastian was a newborn, he was very hard to console. He didn't like to be held, he never looked me in the eye (or anyone else), he ALWAYS screamed and NEVER slept!! Overall, he was an unhappy baby. I took him to approximately 5 different doctors and all of them said it was severe colic. He was referred to a gastroenterologist at Walter Reed Army Medical Center. I was told Sebastian had a milk allergy and his formula was switched to Neocate, which is a presription based formula to help with his "colic". Of course, there was no relief.

Around the time he was 4 months old, I noticed every time I listened to Colplay (X and Y cd) when the song Fix You came on, he was easily consoled.  Strange, I thought to myself.  That's when his love/obsession for Coldplay began. Coldplay was the start to many of his obsessions.

At the age of 6 months, when he was able to sit up on his own, he would rock back and forth, twirl his hand and make this grunting sound. He would never respond to his name and never look directly at me or anyone else the eye. At the time, I was living at Ft. Detrick in Maryland. I took him to several different doctors on post and expressed my concerns about Sebastian's behavior. I was told on more than one occasion, that there was nothing wrong with him, it's all in my head. I even had one doctor say to me "What do you expect, your son is only 6 months old, of course he's not going to respond to his name when you call him or look you in the eye!!" Then he said to me "Maybe you need to see a shrink, you must be overwhelmed since your husband is stationed in Korea and you're living in Ft. Detrick, Md with no family around to help you." Lets just say, he regretted saying that to me because I gave him an ear full. My New Jersey Italian attitude kicked right in!

Sebastian also never wanted to play with any of his toys. I spent a fortune buying new toys for him because I thought he was just bored with the ones he had. He would rather stare at the ceiling/walls. Shortly after he turned 1, the head banging started and the never ending tantrums. He would bang his head on the walls and rub his forhead on the rug. He wasn't talking, wouldn't interact with children. His sleeping pattern was horrible. On average, he would sleep about 2-3 hours a night and that wasn't straight through. He would get out of bed and throw a head banging tantrum that would last 3 hours. Some nights, it would last longer. I felt helpless, frustrated and angry. I knew there was something wrong with him and all these doctors that I took him to were just blowing me off. I never went anywhere with him. Taking Sebastian into a store or mall was a NO NO. Loud sounds were not tolerated well. He still wasn't verbal at 13 months old and he was very compulsive. Everything had to be in order. If things weren't in a certain pattern, he would completely melt down and start banging his head.

Finally his pediatrician that he had at Ft. Sill referred him to a therapist named Lisa Jenkins and a pediatric developmental doctor named Dr. Kukas. He saw Lisa first and she immediately knew what it was. When she told me autism, I wasn't surprised. I had a feeling the whole time, but kept it to myself. I was devastated, as any other mother would be, but I was also relieved at the same time. Finally, we had answers!

The first time he saw Dr. Laurie Kukas, she evaluated him for 8 hours. She gave him the official diagnosis of high functioning autism.  Sebastian has been under Dr. Kukas's care since then. Since he was so young when she diagnosed him, she told me his diagnosis would probably change. She was very familiar with Sebastian's behavior patterns from other children she had treated over the years and knew it would eventually change to Asperger's.

Q: What did you do to alleviate any feelings of stress/concern/being overwhelmed? Are there any particular resources you would recommend?

A: I'm always overwhelmed. It's an everyday battle with Sebastian. I love my son, but he's a handful. When things get out of control and I feel I'm starting to lose it, I'll just go for a car ride. That usually helps. There aren't many support groups in my area for autism. All the support groups are out in the Oklahoma City area. That's about a 90 minute ride for me. I do not have the time to get there, especially now with with a new baby.

Q: Do you have any stories of family and/or friends who reacted poorly or just don't understand (names will be withheld to protect the guilty!)?

A: YES!!!!!!! Close family members, but we don't have to deal with them since my kids and I live in Oklahoma. Also, it took my fiance, Jarrette, about a year or so to fully understand Seb. Jarrette didn't react poorly, but he couldn't handle Seb in the beginning of our relationship. At first, he thought he was just spoiled and that I was letting him get away with everything and that's why he's "out of control". I'm not going to sugar coat it, Jarrette and I had many up hill battles to conquer between us when it came to Sebastian. But, after educating himself through internet resources and attending some appointments with Dr. Kukas, Jarrette now understand Sebastian's needs. He is a great step dad. Sebastian loves him to death. They are X-box buddies!

Q: Do you have any stories where you encountered anyone on the street or in a store or anywhere in public who reacted without empathy or understanding for Sebastian and you and your family?

A: Too many. About 95% of the time, Sebastian will act out in public, whether it be at the local grocery store, park, mall, church, movies, etc. When he does act out, we leave. There is no need to battle it out in public. Besides, I will lose that battle with Sebastian. He gets overwhelmed, I get it, I understand. He wants to go to all those places, gets excited when we are on our way to those destinations, but melts down once we are inside. People stare, give dirty looks, talk under their breath. Oh well, I don't care what they think. They are ignorant. Let them stare away. I know my child is not "bad" or "spoiled."

Q: Has Sebastian's school and doctors been supportive? I imagine there's a certain degree of stress in making sure Sebastian receives the right treatment - medically, personally and in his education - and that you've got to be tough at times. Have you ever had to go Jersey on anyone and scare some Oklahomans into actions?

A: I have no complaints about his doctor. Dr. Kukas is a great doctor and has the patience of an angel when it comes to children with all developmental delays. However, I had some battles with the school district. I felt like Sebastian was being compared to the severely autistic children in his class and the special education department felt there was nothing wrong with him, even though he had a diagnosis. Yes, Sebastian is extremely smart. Yes, Sebastian is verbal. But, that doesn't mean he shouldn't get the same treatment as anyone else. He was eventually enrolled in a program where his teachers worked wonders with him. He didn't talk much when he first started at school at the age of 3. Now, I can't get him to shut up! He was mainstreamed this year and started kindergarten. He loves school and his teacher Mrs. Jennings.

Q: Recently, Sebastian's diagnosis was changed to Asperger's. Why was the diagnosis changed? Does this change your parenting or his education or treatment?

A: My parenting didn't change at all. Even though Sebastian's diagnosis was changed, he still needs the structure. He was also diagnosed with OCD and separation anxiety.  Everything needs to be the same everyday. Same routine over and over. He doesn't like change and doesn't handle it very well. His diagnosis was changed to Asperger's because he was so high functioning and verbal.

Q: What do you want the world to know about autism? And about Sebastian?

A: There are many different forms of autism. 1 out of 150 children are diagnosed each year. We need more resources and programs to help families and children with this diagnosis. Many people believe it is caused by vaccines. In my opinion, I don't think so. I believe my son was born with it. Who knows how he got it. All I know is God blessed me with a beautiful boy named Sebastian Jude. He may be handful, he will say rude things to people, he will hit or tell you off, he'll throw tantrums in public and at home, he'll destroy things when he doesn't get his way, he'll talk about topics that no one else cares about, he'll repeat himself over and over, he wants the same routine daily, he'll overreact to many things, he keep can't his hands to himself because he gets this sudden urge to touch someone, he'll smell you, he may lick and kiss you too, but he's my son, my Sebastian, and I would never change him for the world!

Q: And, of course, since this is Stop and Blog the Roses, what three things are you grateful for today? 

A: I'm grateful for my children's health, my new beginnings in life with Jarrette and for people like you, Jennifer, who are putting Autism Awareness out there. Thank you! xo

~~~
Thank you for reading Stop and Blog the Roses.  Follow me on Twitter @FernRonay and on Facebook here.

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    I'm glad that the world is promoting awareness of autism spectrum disorders today! I believe parents are the actual real experts on autism. I'm a psychologist but I believe parents are the real experts on autism spectrum disorders. Just wrote about this and provided a great list of blogs of parents dealing with autism spectrum disorders. If anyone wants to check it out, here's the link:

    http://www.themommypsychologist.com/2012/04/02/april-is-national-autism-awareness-month/

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