- Diseases, Disorders & Conditions
My Experience With Autism
Signs Something Was Wrong
When my first son was born, at 36-years-old, we were on cloud nine! I married a little later in life and had always wanted to be married and have a family. Just like a lot of other mother's probably feel, I thought of my son as perfect.
I noticed that he was a little passive in the womb; but I guess since I had never been pregnant before that I had never really thought much about it. My doctor visits always came out okay. I had trouble with my iron and low blood sugar for awhile. I had morning sickness for the first 4 1/2 months, and had trouble with kidney infections during the last trimester. And, my labor was about 39 1/2 hours before I went through a c-section. However, our son Devin, was extremely cute, with his blue eyes and blond hair.
Looking back, I noticed that our son never really liked to play all that much. However, he was such a good baby; and people would stop us in stores and talk about how cute he was. I guess I just always thought that he would catch up. The signs were very subtle. Even though I had had experience working in daycares, I just didn't think that much about it at the time. And, I hardly knew anything about autism. My idea of autism was about a movie I had seen years before about a boy, who was unresponsive, spun plates around, had no eye contact, and his parents invented a therapy, where they worked with their son, Raun Kauffman, for many hours on end. That was my vision of autism.
We noticed that our son was behind in his development and enrolled him in First Steps. Therapists came to the home and gave him therapy. He received developmental, speech, occupational, and physical therapies.
Our son started talking at about 18 months. However, it was very brief. Then, he stopped. I remember thinking that I wished that I had recorded those words.
As time went on, it became clear that something just wasn't right, although we couldn't put our finger on it, I think we would have had him diagnosed earlier if it had not been for my mother being so sick at the time. When our son Devin was almost 2, in December of 1996, my mother was in the hospital, for the last time, because of her almost life-long lung disease and congestive heart failure (as a result). In fact, she had gone into a short coma, which lasted for about 20 minutes. We were very thankful that she came out of it. However, mom was put into hospice care, where she passed-away at home, on May 25th, 1997.
I was such a nervous wreck when my mother was sick those last six months that I don't think I could have handled another major heartache at that time.However, as many months passed, I was making progress with my heartache and grief. And, we knew that we had to discover what was going-on with our only child. So we got a referral to have his ears tested, with a brain-stem response test. By the time we left, the clinician told us that everything looked fine. However, she should not have told us this, for we were in for a very rude awakening. We were ready to go out to a nice restaurant and celebrate the next evening. But the ear doctor called later that night, and said there was something wrong. Our hopes were dashed! I think we felt a sense that something was terribly wrong. We just didn't know what it was!
So we went back to the ear doctor, and he referred us to Riley Children's Hospital, in Indianapolis. In the meantime, I looked up autism in an encyclopedia, just out of curiousity. It did mention about autistic people being mute. This information gave me no relief. I quickly put it away. I still felt that surely this couldn't be the case. We tried to think positively about all this. Boy, was I ignorant! What in the world could be wrong with my son?
Soon the time for the evaluation at Riley came. I still remember it well. It was the day after Easter. Fourteen years ago, bright and early in the morning. Along with me, my husband, and our son, Devin, my husband's sister and my step-dad went with us. It was a team of professionals who diagnosed Devin.
When they diagnosed Devin I felt like I was kicked in the stomach. I wasn't prepared at-all for what I heard! As I listened more and more, I heard the words, but I didn't hear them! It was too much! I ended-up walking out of the room. I went directly to the restroom, hoping for privacy. Soon I could hear my husband crying outside. But, I could not comfort him. I just wanted to be alone. However, I knew I had to go back into that room. But, nothing improved. I couldn't hear anymore. We quickly closed the meeting. I told them I just wanted to go home. In fact, I really didn't want to be around my family, at the time. I just wanted to be alone.
When we were walking out to the car, I told my family that maybe the world would end today; and I meant it. However, I woke-up the next day, and to my chagrin, the world was still standing.
I hardly got any sleep the night before, so I called an older close friend, who was like a mother to us. She came over right away and talked to me. I could tell that my eyes were swollen and red, from crying all night. I was very thankful for this lady. However, time and prayer was the only thing that would heal.
For a good while, I was still in denial, to a certain degree. And, for awhile, I didn't want to leave the house much. I couldn't handle being around "normal" children for too long. I evaded baby showers. The son I thought I had was gone. Dead.
My brother's wife soon called someone from a support group. My sister-in-law told me that this support person said I would probably feel this way---like I lost a son.
Speaking of support groups, my husband began attending one, but I couldn't. I just couldn't. I didn't want to look at the "face of autism." This uninvited "evil" that came into our home, and took my "perfect" son. Someone I excitedly woke-up for each morning. One of my great purposes in life!
After a short time, my sister-in-law gave me this book called, "Let Me Hear Your Voice." It's an inspirational true story about this couple in New York, who had three kids; and two out of the three turned-out to be autistic. The couple trained their own therapist to give ABA therapy to their child. And, she ended-up recovering from autism. Then they found out that their younger child also had autism. This child also received ABA therapy. They also recovered from autism. This was a fascinating story, and for the first time gave me real hope! However, we soon discovered that this ABA therapy was going to be really hard to get. Insurance just wouldn't pay for it!
In the meantime, we were still having a hard time, especially me. Sometimes I would have flashbacks, in my mind, of Devin being diagnosed and the team who diagnosed him. Especially this psychologist. I kept seeing her, smiling through practically the whole thing. Which, at the time, I saw nothing to smile about! This was MY son! MY son!!
Actually I was never diagnosed, but I think I probably had a mild case of post-traumatic stress disorder. And, sometimes, I felt like asking my mother why she had to leave at a time like this. It was a tough time. And, I knew that I should be working with my son, but I just couldn't find the emotional strength to do it. I maybe should have sought counseling, but I didn't do it. I really felt alone in my pain and almost resented the fact that more people were not reaching out to us.
However, through the prayers of our family and friends we gradually adjusted and things got better! The first year was especially hard! After awhile I started collecting more books on autism and started researching on my own.
Eventually, I started working with my son at home, about 4 hours a day, with ABA trials and the Sonrise or Options program I was referring to earlier, when I talked about Raun Kaufman and his parents. Also, we had a little bit of money to hire someone to help me with Devin's therapy. However, we could only afford to pay them a fraction of what they would get otherwise. The money only lasted a relatively short time.
As far as school goes, some teacher's agree with intensive therapy, and some don't. Especially when it comes to ABA therapy.
Eventually we decided we'd like to adopt a child. This has been good for our son. Our daughter joined our home when she was thirteen. She's 7 1/2 years older than Devin.
We tried through the years to get Devin into a special school or to get the professionals to be able to work with him. However, the insurance would not pay for it. However, I'm very pleased to report that two years or so ago, we got ahold of a company who has an informed insurance person who was able to get it all worked out for us. I'm really pleased to see these insurance people finally paying-up for this help! There are so many kids being diagnosed with autism anymore. It truly is an epidimic!
As Christians, we have tried many things with our son, including a lot of prayer! By a lot of people. Including many pastors and evangelist's.
As time went on, I have continued to work with Devin, much of what I've taught myself. We have a whole library of autism books, here at home.
History Repeating Itself?
When Devin was 9 1/2 we adopted a baby boy. He was somewhat of a hard baby. However, he was also good for Devin. Devin used to hold his brother's hand. And. the two brother's used to rough-house. Of course now, at 17, Devin probably thinks his brother is a little brat.
This time, we noticed earlier-on that our youngest son, Brinn, was a little behind. So we enrolled him in the First Steps program and also in a special-needs pre-school. He made some big progress. However, he had somewhat of a hard time adjusting to pre-school. He was a real home-body and mama's boy. It took him about six weeks, but he eventually stopped crying at pre=school.
Brinn was somewhat of a clumsy baby and still is a little clumsy. And, so I wondered if he could possibly have a little bit of cerebral palsy. This too can have many levels.
For awhile we thought Brinn might have ADHD. Even his pre-school teacher thought so. However, when he got into regular school, his teacher didn't think so. I think he has had varying levels of some characteristics of ADHD; but we no longer think he actually has ADHD.
When Brinn was still four, we took him to Riley Hospital to be evaluated. I noticed the evaluation room was the same one Devin had been diagnosed in years before. The room and the area kind-of gave me some bad "vibes," but I was okay.
However, to my surprise, the team started asking questions that I knew related to autism. They ended-up diagnosing Brinn with PDD-NOS. But, they did say that the characteristics of autism in him were so mild that he might end-up growing out of them. This was great news! He was also diagnosed with mild mental retardation. Not cerebral palsy.
Later-on, we found-out that Brinn has a chromosone deletion, which explained a lot of his earlier behaviors. We also found-out that Brinn has some oppositional-defiant disorder. However, at the same time that Devin started getting professionals to work with him on ABA therapy, we also got the same help for Brinn.
Devin has made much progress; but Brinn especially has! And, whatever characteristics he's had of any disorder has been disappearing.
We are just so thankful that both our sons are getting all the help they are getting. The ABA therapist's even go with them to school!
I've changed a lot since all those years ago when our first son was diagnosed with autism. Yes, it is unfortunate that our older son has severe autism. However, what I've learned and how I've grown through the years, I wouldn't trade for the world! God has taught me much!!
We love all our children and two grandchildren; and that includes some adopted children, as well.
I am very pleased to see things getting easier for kids with autism. The numbers are growing! And, our government must recognize this and care what happens with our disabled population! Autism or whatever the disability is. We are all God's children!