Tyler's story

My son was born with Angelman Syndrome. At birth he was smaller than expected, but otherwise healthy. He had trouble eating from the beginning. It seemed he didn't know how to suck. His first few days were difficult when it came down to feeding time. It took him 45 minutes to an hour just to drink 2-4 ounces. Several days after bringing him home, my aunt who is a nurse suggested taking him to a pediatrician in a nearby town (our doctor at the time was a family practitioner) to see why he was having so much trouble eating. After watching him try to eat, the pediatrician (Dr. O'Brien) recommended treating him as a preemie and decided that since he was struggling so much to eat that we should use a feeding tube inserted 1/4-1/2 inch into his mouth along with the nipple so that he didn't have to work so hard to eat. She figured he was burning more calories than he was taking in. We fed him like this for several months until he finally learned how to suck.

Months went by, and he missed milestone after milestone. Finally when we went in for his 12 month check up, the doctor referred us to the University of Iowa Center for Disabilities and Development for testing. Up until then, when confronted with the question of why he was so far behind, our doctor would just reply by telling us, "He'll catch up." Little did I know then that there were free services aimed at developmentally delayed children that we could have been taking advantage of. This was another thing our doctor neglected to tell us. By the time our appointment at the CDD was over Tyler had seen about 7 different specialists, and had been diagnosed with strabismus(lazy eye), congenital encephalopathy(small head, predetermined before birth) and gastroesophagal reflux. We were then referred to a pediatric neurologist. We also found out that day that our doctor had noted in Tyler's records that he thought it was autism. Yet another thing that wasn't told to us. (Can you say, STRIKE 2?) At that moment, I decided that we would not be seeing our doctor anymore, and started taking Tyler to Dr. O'Brien.

We then had our appointment with Dr. Mathews, the ped. neuro. She sat and talked to us, and knew just by looking at him that it was Angelman Syndrome. She had blood drawn from him, and we went home.

A couple weeks later we got the call that confirmed it was A.S. I didn't know how to react. Happy that we finally had a name for what was wrong, or sad that there was no hope of him leading a 'typical' life. I felt both. I also went through some quiet mourning for the child that I lost. The child that you dream you'll have when you imagine having kids. I would never have that with Tyler. I'd never be able to hear my child's voice say 'I love you mommy'. I know now that it is possible to hear that, but if I do, it may be only once. In the 2 1/2 years that Tyler has been on this earth, he's only said one word. Buh-ba. His nickname. He said it in March of '03 and hasn't said it since. I still have hope that one day he'll say Mama, but I won't let myself be disappointed if I never hear it. I've learned that with Angels (A.S. children) a single look can say a thousand words. He may not be able to talk with his mouth, but he can talk with his eyes and that means more than any spoken word. Sure, there may be alot that goes with A.S.- seizures, mental retardation (I hate that label, how can a person look at my son and all he does and say that he's 'retarded'?), feeding problems, delays, speech impairment, etc., but I wouldn't change my son for the world. He's a happy little guy without a care in the world, and people could learn alot from spending a little time with him. He's always got more than enough love to pass around and doesn't mind giving it. I don't know what I would do without him. If given the choice to have him the way he is, or have him 'typical', I'd have to choose the way he already is. There is a reason why he was born this way, and it's not my job to sit there and question why or wish he were different. My job is to be his mom and love him unconditionally, and I do. I don't mind the speech, physical and occupational therapists coming in and out several times a week or the trips to the doctor every couple months to check his weight. It's all part of Tyler, and I love him more than anything.


(Please understand, not all cases of Angelman Syndrome are the same. Some can say a few words or use other forms of communication. Some learn to walk, others don't. Most have seizures, and the seizures themselves differ in severity. For more info, visit the Angelman Syndrome Foundation.)