A mother's story

  • Published
  • By Elaine Frankhouser
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Sometimes I am not sure others could possibly understand my parenthood experience. I hope, though, that if I share my story anyway, a few readers will see that they are not alone, and that all readers will learn how to be more sensitive to the special challenges families face raising special-needs children.

When I was younger, I dreamed of how people would compliment me on my well-behaved children someday. That's how it was when I was little. I was the youngest of five kids and my parents were pretty strict with us. We weren't perfect, but overall, we were pretty good. I remember seeing how much my parents did for us and thinking, "If you have kids, be prepared to work." And I was OK with that.

My husband and I had waited 10 years to start our family. By our 14th anniversary we had our four children! I wanted four kids, and when I had my fourth child, our only girl, I was so elated! At the same time, I felt so overwhelmed. My oldest son was 4, and our twin sons were only 2. Any mother with so many little ones would be overwhelmed, but in our case, it turned out that some of the difficulties I was facing were not typical. Specifically, I was slowly discovering that my twin sons had special needs. Several years later, they would be diagnosed with autism. And, only a year ago, one of the twins was also diagnosed with Tourette's Syndrome. (Tourette's is a genetic disease; its symptoms include irrepressible verbal and physical movements called "tics.").

I always say that I had one year of motherhood bliss. I had one year of thinking that all of my kids were healthy, typical kids. Looking back, I'm thankful I had that one year. Some parents don't even get that. And our boys have been healthy physically, and that is also a blessing.

My educational background is in Speech-Language Pathology so when they weren't talking at age 1, I was very aware of that delay. But I also knew that twin boys often have speech delays. So I waited another year before I expressed a concern with the pediatrician. At that point their vocabularies consisted of about five words each. Typically 2-year-old kids are putting two words together to make comments or make requests. I still wasn't that worried because I thought all they needed was some early intervention (in other words, special services before age 3) to catch up and be good-to- go by kindergarten.

The boys were getting private speech therapy at age 2 and when they turned 3, they transitioned into a school district preschool program in Colorado Springs. That's when I first heard the word "autism" in regards to my sons. Their preschool teacher had a son with it and she said my boys had some of the same behaviors as her son.

At the time, I disagreed. I said, "No way, my boys don't look like 'Rainman'- they make eye contact, like to be held, feel connected to me and our family and are not anti-social." Still, I was aware that my youngest was developing at a more normal pace than her older brothers. By age 3, she was able to communicate better than the boys and was able to react to things in a more age-appropriate manner.

The boys were officially diagnosed with autism when they were six years old and we were living in Cheyenne, Wyo. I went to a conference for parents of autistic children sponsored by the school district a year later. I learned that although rare, some children with Autism can be overly social. It was a turning point for me because before hearing that, I don't think I really accepted that my sons were autistic. I knew that they had delays and had a lot of difficulty coping with the rhythms of normal life. Minor things that most other kids just deal with would drive my twins to a total "meltdown."

Families with autistic children live in fear of these meltdowns. Sometimes, it is easy to predict a one, but just as often, they come unexpectedly.

For example, one day I had to go to the commissary. (The kids were aged 8, 6 and 6, and 4). One if the twins liked me to use a specific cart at the commissary because of the design on the wheels. There were only a handful of that kind of cart and usually I could get one every time we went there. Most times I would have to pry apart the carts to reach the right one but I'd do it to keep my son calm. As many parents of autistic children realize, whatever you need to do to help your child deal with "normal" life experiences, well, you just do it.

That day, all those special-wheel carts were being used. I tried to calmly suggest to my son that we could use the other kind of cart, but he wouldn't hear of that. My other three kids wanted to go in the commissary because I had promised to get them all a doughnut if they behaved well. But my other son was inconsolable, and screaming what I call the "rollercoaster" scream, you know, the loudest, shrillest kind of scream. He did not want to go in the commissary, but he also did not want to leave. [These kinds of transition issues are very common in kids with autism.] Of course, at this moment it starts to pour down rain, too. The other kids are upset to leave but are willing to walk back to the car. My son doesn't want to walk back to the car and throws himself on the ground of the commissary parking lot, so I have to try to carry a 70-pound, extremely upset child. He would not get in the car without a fight, so by the time we are all situated in the car, we are soaking wet and I'm just bawling.

There are probably a few parents of toddlers who experience this kind of situation more regularly. But they probably don't have the experience of the child talking about it later. The next day my son, who had been like a rabid animal, told me in a very calm voice, "I had a meltdown yesterday, didn't I?"

When he is calm, I do talk with him about more appropriate ways of expressing his emotions. And, I probably have gotten better at predicting the things that might cause a meltdown to avoiding them. Gradually, as the twins have grown, they have even surprised me sometimes by behaving well. For example, at my husband's change of command when we arrived here, they were in the audience and behaved well for that ceremony.

The twins have unusually good memories so when I bring up things from the past they tend to remember it. They are really quite remarkable. When you consider how hard they are working to communicate with us, it is humbling to me. Their memory is so clear that they can reminisce about something that happened in preschool and they can tell me what they were wearing that day! They are very artistic and have a keen sense of humor. It is also a blessing that they are very close, and often can finish one another's sentences.

The impact of autism on my "typical" kids at home is worth mentioning. My oldest son is 14 now and feels very responsible for the younger siblings. I sometimes have to make him get out with kids his age so that he can relax and have some fun and be a kid. My youngest has surpassed the twins academically and socially and is able to do typical kid stuff that the boys cannot, like sleepovers or play dates. In some ways, I do think my relationship with my "typical kids" is unusual. Because things can get a little crazy sometimes, they are more mature than their peers, and more generous to those who struggle. We do the best we can when situations end up not working the way we had hoped. And then we try again.

The diagnosis can weigh on everyone. But the flip side is that when we understand better what is wrong, we can help the twins to find better ways of coping. Now that we know one of the twins has Tourette's Syndrome, we understand that the vocalizations and physical tics he makes at inappropriate times are not under his control. One night, he told me before bed, "Mom, I wish I had a magic genie to take the twitches away." That got my tears going, but I am glad that he can tell me how he feels. There is hope, because we continue to learn and grow, and along the way, we find out things that help us love each other better.

When I started working on this article, I wasn't sure if I should tell these stories because I didn't want people to pity us. I just wanted people to understand that these kids aren't trying to be difficult and they aren't brats. A lot of these kids look like a typical kid. As they get older, people expect them to behave a certain way. I would hope that any parent would only ask of a child what he or she is truly capable of doing. I can't make my boys not be Autistic. That is the reality. And for you readers out there who are going through this, please remember that you are the blessing in your children's lives and you are their best advocate to make sure they get what they need.

We don't have good days and bad days with our twins; we have good moments and bad moments during the day. A good moment could be that my son gets himself dressed independently without a meltdown. Or, it could be them laughing while reminiscing about a funny show or a funny family story or them having fun while doing a family activity. The bad moments sometimes happen at school, and sometimes at home. The bad moments can be very intense, but this makes me appreciate the good moments more than I can express to you.

Why were my sons given this difficult challenge of autism? I don't know why my sons and my family were chosen for something harder. But I do know what needs to continue to be done.

I need to stay strong. I need to cry from time to time. I need to fight for them and I most especially need to be thankful for their gains.