Lorri Unumb, vice president of state government affairs for Autism Speaks, travels the country advocating for families and individuals facing the challenges of autism. This is her ongoing series "On The Road For Autism Reform." Read more North Carolina stories here.
The best part of my job is meeting amazing autism families all around the country. During my time in North Carolina recently, I have heard so many inspirational stories from all corners of the state, and I want to share them during these last few weeks of the legislative session. Each day, I will share a post written by a North Carolina family who is working to help pass autism insurance reform this year. Some of these families desperately need coverage for their own child; some of them are working solely for the benefit of others. These people inspire me every single day. CLICK HERE to contact your local lawmakers.
Meet the D'Amelio Family
My journey with autism began on June 4, 2001, which by the way was our oldest child Nicholas’ 5th birthday and the day Christopher was diagnosed at 2 1/2 years old.
I sat on one side of a table by myself with the “experts” in childhood development area lined up on the other side. I knew it had to be bad when they placed a box of tissues in front of me. As the meeting was getting ready to start and no one wanted to speak, I jokingly said it must be pretty bad if no one wants to speak! At that point the psychologist said I’ll start and said, “I place Christopher on the CARS scale at a 38.” At that point, I did not know what the CARS scale was or that it had anything to do with autism.
The meeting went on, and things went downhill from there. I found that my beautiful son had severe autism, and according to the people at the table that day he would never speak, be potty trained, or be a functional human being. It was suggested that I consider having him institutionalized at that time and that I would definitely have to by age 10.
While I sat there and listened to them tell me that my child on all levels had the functioning skills of a child less than 10 months old, all these thoughts went through my head. There goes his best friend, his first sleep-over, his driver’s license, his first kiss, his first love, his wedding and most importantly of all his children. Our grandchildren! I refused to cry in front of these people even though my heart was breaking and I didn’t know what to think.
When I asked what the next step was, the comments were very vague. They mentioned ABA and some other types of therapy, but with not much enthusiasm or hope. They were sympathetic and felt sorry for me, but as I walked out the door I was sent home with nothing but the knowledge that life was NEVER going to be the same.
As I sat in the car and cried, my husband called and asked when I would be home. I tried not to show my despair over the phone and told him it was worse than verbal apraxia and I would talk to him when I got home. I tell everyone it was like being told your child had died.
While I am blessed with having Christopher in my life, it is not the life I envisioned when I saw him on the sonogram. I then had to make the journey home and tell my family the uncertain future. When I told my Mom the diagnosis and how upset I was, she responded with “Do you love him any less then you did this morning?”
In a way we were lucky, as I did not take this diagnosis as being in stone. Our oldest son had been diagnosed with verbal apraxia at 3 and we had been told he wouldn’t speak until 10; we had already beaten that by 5 years old. I enrolled Christopher in the ABC Tutoring Speech Stimulation program; it was the same program that had done such a wonderful job with Nicholas. I just want to say Linda Goodard at ABC is a saint! I would drop Christopher off, and he would plaster himself on the door like a Garfield doll on a window! Other parents would ask me how I could leave him screaming, crying and kicking; I would tell them because this is the best thing for him. The staff can help him and teach him how to talk, take turns, and all the things he needs for life.
For the next year, we told few people of his diagnosis. The few that learned were very close to us, and even their responses made us leery of sharing. When we finally came out of the “closet” and started telling people about Christopher, I referred to it as having our AA moment. “I am Christi and I have a child with Autism!” People would say “oh my,” “I’ll pray for you,” “how do you do it?” “do you want him to have it?” and the best “what did you do that God is punishing you for?”
In the coming years, it was many days of forcing him to make sounds for everything and anything. We used PIC cards and made him make sounds for what he wanted. Rules had to be in place, and ALL steps had to be followed. I also followed up with some great doctors, and we ended up at Duke University with Dr. DeLong prescribing Prozac. It was fun explaining it to the pharmacist that we could not get pills into Christopher and we needed a liquid form. Within a month, we started getting more speech and ability to follow more instructions with fewer meltdowns. Were things perfect? No. But it was a spring board to moving forward.
Time moved on and his speech slowly improved; his ability to follow instructions and change in plans also became better. Have we mastered all? No, we are still a work in progress. At 15, we are light years away from his original diagnosis. He speaks and can get any idea across (that he wants to, that is) and he has a terrific sense of humor and has empathy. We are now in the phase where we wonder about his future. How is he going to earn a living? If you ask him, he is going to go to college and become an engineer for the Great Smoky Mountain Railroad. Where is he going to live? At some point, he may want to move on like his siblings. Bob and I won’t be here forever for him to live with & support. I guess that is the issue that makes me emotional. Where does he go after we are gone?
My dream is for him to have a job that will support him and give him a sense of accomplishment. More than just wasting the hours of the day or holding down my couch. My greatest goal is that Christopher PAYS taxes instead of receiving support! I want him to become a productive member of society!
My family has for the past 5 years worked endlessly to end private insurance discrimination in North Carolina by getting the autism insurance bill passed so those with Autism can get the therapy they NEED to help with a productive and fulfilling life. I don’t want anyone to have to go through what I went through when we were first diagnosed. There is hope and a game plan that can be started and seen through. My 10-year-old daughter already claims she is not having kids because she is afraid of autism; we need to change this now!
Charlotte, North Carolina