As I am sure many of you know, April was Autism Awareness Month. As a parent of a child with autism, I was overwhelmed with articles about Jenny McCarthy, causes of autism, Kristin Cavalleri, autism therapies, studies, etc. And really, is anyone more aware? Does anyone know one more fact about autism because they read an article on the Internet? These articles won't get anyone through the day-to-day of caring for a special needs child. Trust me I have done the legwork.
The truth is, we cannot control what others do or think about special needs kids. But we can control what we think as parents, how we treat Brody, and what therapies, treatments and causes we believe in. If you've read my Facebook posts about autism, you probably know I get my advice and medical direction from medical or professional experts. Period. No, I have not read any book by Jenny McCarthy. Matt and I stay away from sensationalized media (in regards to Autism...I am obssessed with In Touch and all of those crappy magazines!)...it took me 3 years to even read a book about autism that was not published by someone with a Ph.d. (and I am so happy I folded, it was really, really good...but from a standpoint of personal experience and compassion, not facts about causes or therapies).
So, in honor of autism awareness, I'd like to introduce Brody's team...these are the folks who give us our advice and awareness about Brody's care. And I'm sure not many people are aware of what it takes to care for a child on the spectrum or how many individuals work as a team to help a child.
Our family would be lost on Earth without them:
- Dr.John Mantovani: Dr. Mantovani diagnosed Brody with autism when he was 22 months old. He performed a 90 minute screening in his office, and reviewed several reports and profiles from Brody's speech pathologist. We visited Dr. Mantovani 3 times in 6 months to confirm the diagnosis. As soon as Brody was diagnosed, we asked Dr. Mantovani to evaluate Destin to make sure he was developing normally and Destin was found not to be on the spectrum. Dr. Mantovani is one of the most compassionate and loving people I have ever met. He was there for us during a very scary time and his staff was incredibly sweet to our family. I saw him in the grocery store a month ago and I blubberingly thanked him for his care...and cried. If you ever need a pediatric neurologist, he is your man. He was also voted #1 Pediatric Neurologist in St. Louis (by St. Louis Magazine).
- Dr. Dennis Altman: Dr. Altman is another physician in Dr. Mantovani's practice. We also had Dr. Altman perform a screening on Brody and on Destin to determine their status on the spectrum. And Brody again was diagnosed and Destin was found to be "normal..." (whatever that means!). Always, ALWAYS get a second opinion...we actually visitied 3 nuerologists for Brody's diagnosis.
- Dr. Sue Jagler: Brody's pediatrician...we seek her out for Brody's main health concerns...weight gain and eczema. Brody is very healthy, but he's so tiny. We typically visit her every 3-6 months to be sure he is gaining weight. She was the first physician to suggest Brody may be on the spectrum. He was 18 months old when she suggested we seek some therapy for him.
- Bryan Thorson, MSW: Bryan is our family's advocate and therapist. I visit Bryan on my own every 2 weeks and will occasionaly bring Destin, Brody and Matt. Bryan has worked with young adults on the spectrum for 17 years and he also gives wonderful advice about acceptance, love and care for children with special needs. He's our family's sounding board. Every time we see him, Brody jumps on his lap and gives him a kiss. He's been a Godsend to us...he's taken many late night worried calls from me and has always given great guidance.
- Maura Donahue: Maura is Brody's lead teacher in his kindergarten class. If you want to be blown away by an educator, watch Maura in the classroom. This woman has a fire in her I have never seen before in any professional of any kind...she is determined to see children succeed. She is tough but affectionate and funny. She has the best sense of humor and nothing surprises her...we all love her. I credit her for potty-training Brody and for his motor skill development. Brody literally runs to her in the morning...wow, we are just so lucky to have her.
- Matt, Brody's para-professional: a para-professional is a full-time educator assigned to a special needs child. Brody has 1:1 care for an entire school day and Matt is his main man. When Brody was assigned to Henry school I made a special request for Brody to have a male teacher and Matt is just was the doctor ordered. He's loving and sweet but he also doesn't take much crap! He's tough, strong and the best big buddy to our guy.
- Monica Kaup: Monica is Brody's educational specialist with Parkway. She ensures Brody is getting the care he needs and is on track for success. We check in with her on an as needed basis and I see her in Brody's class just about every time I visit the school. She is another educator who will blow you away with her knowledge and compassion. I also credit her with Brody's progress and for just loving him so much. She held my hand on Brody's first day of preschool and hugged Matt and I when our first IEP finally wrapped back in 2012. She firsthand made sure his services were finalized in the school district and secured his placement...plus the hundreds of hours of therapy.
I know you can read a news article about the causes of autism, facts about autism, stats about autism, but you can't really read an article about what it takes to help a child with autism be the best they can be. But you can shake hands with a special needs person, or compliment a teacher or donate to a cause you believe in...that is awareness.
Awareness isn't knowing the facts or studying the numbers, it's knowing who to turn to, who you can trust to care for your child. Being aware is being humble. It's about being aware of who you are and how you treat others.
Before Brody was diagnosed with autism, I was extremely closed-minded and ignorant to the special needs community. In fact. I was terrfied of anyone with special needs. And now, I snuggle with a special needs baby every night and pray for his future and health. And would I do the same for your child? Yes. I would. And Matt would be right behind me.
We're not Saints...we're NOT perfect...we're just a mom and dad. And we won't stop accepting children for who they are...loving unconditionally or pushing like hell for Brody's wellbeing.
Accepting your children. That is awareness.
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