By Jayne Dixon Weber

A grandmother of a newly diagnosed grandson once called me to talk about the diagnosis. “Where is the hope?” she asked. I did not say anything to see if she would go on. “I mean, I read ‘mental retardation,’ low IQ, special education, behavior problems, delayed speech, and on and on. So, where’s the hope?”

I paused for a second. No one had ever asked me that before. I told her about the hope in my life, and I would like to share that with you.

Finding Hope

The Diagnosis

Getting a diagnosis is hard. It’s really hard. There has been nothing else like it in my life and I cannot imagine there ever will be. It made me sad … really sad.

My husband and I went to the library (it was the ’90s) and found one book, with two pages that talked about Fragile X syndrome. The only word I remember from those two pages was — institution. I remember thinking — a child like mine could end up in an institution — really? I mean he wasn’t that bad, was he?

No hope there.

The First Doctor Visits

We went to see Dr. Hagerman the following week. My head was still spinning. I remember thinking that she was a nice lady little did I know! We also met with a genetic counselor (Amy Cronister) and Mouse and Tracy. At the time I had no idea how lucky we were to be able to meet with these people so soon. But I have to tell you, I was in such a fog, I only vaguely remember meeting everyone, I did not hear the word institution, I remember thinking — this is a big deal — and I wondered if Mouse went by “Mouse” all the time? I’m guessing my husband got more out of the visit.

In retrospect, this doctor visit was my first sign of hope. My world was not going to end, no one was going to die, and I began to realize that my life was just going to take a different path.

I could live with that. It didn’t stop me from being sad though.

The First Year

I went to a couple of local support group meetings in the year after Ian was diagnosed. At one of them, the parents all complained about their doctors and the struggle to get a diagnosis. I had my complaints too. But the longer I sat there, the longer I realized that I had been through this all before, complaining about doctors, and I thought — well, I can keep doing this or I can do something about it.

Not that there is not a time and place to do this, but I could only complain about the doctor for so long; I could only have self-pity for so long because I got tired of feeling that way. I made a conscious decision to change the way I looked at things and to change the way I did things.

I began to learn what little information there was about Fragile X. And I think because of that, I would look at Ian and wonder — with more services couldn’t we make this thing go away? I filled our week with as many services as I could. The therapists kept telling me Ian was making good progress.

I became more hopeful.

Defining Progress

My son made progress, but I quickly learned their idea of progress was different from mine. He was making progress, but he was not catching up.

Hope seemed to alternate with despair.

What I was just beginning to learn was the speed at which Ian learned, along with which areas were easier for him and which were more challenging. I thought for a couple of years that with more and more stuff? I could still speed this learning up.

When he started school, the teachers and therapists who worked with him got so excited about his progress, but then every IEP meeting brought me back to reality. I thought yes, he’s making progress but he’s not catching up.

I used to hate IEP meetings. I would cry for days before a meeting thinking it was going to be awful. While they were not always awful, I always learned how disabled he was.

Hope . . . then despair.

Looking for the “Ah Ha” Moment

One thing I was doing during this time was spending a lot of time with Ian in hopes that I could figure out the best way to teach him. I would try different activities in different ways at different times. I was looking for that ah ha moment.

What I really learned during that time spent with my son was what a cool person he was. He was funny, he had a laugh that made me laugh, and he had a view of the world that I had never seen before. Everyone is nice in his world. Everything is interesting. He was interested in things I knew nothing about, like the names of different kinds of trucks and how a fire station operates.

Because of Ian and his social drive, we now know many, many people in our community by name our mail carrier, firefighters basically, you can name the profession, we know them.

The ah ha moment did come. It was when I realized Ian was really like every other child. He has his own interests, his own way of learning, and his own speed of learning. I was a swimmer. Neither one of my children (one with Fragile X, one without) like to swim. I used to think — what’s the deal with that?

It’s called uniqueness. Hmmm.

A New Kind of Hope

My hope has changed over the years. I used to hope Ian could talk, read, and have friends all short-term hopes. He has all those now, though they would be considered different from most people his talk sounds a little different, his reading is okay, and he has his own friends. It’s different from mine, but that does not mean mine is better.

Do I hope for better treatments? Sure I do, but only if it adds to his life. But, I don’t put all my hopes in one basket.

Great story . . . Ian works at our local grocery store. One day my husband was in line with him and an elderly woman came up to my husband and asked, “Is that your son?” My husband said it was. She said, “Whenever I am having a bad day, I come into the store just to see your son. He always makes my day.” She had the biggest smile on her face. Many people have come up to me and said the same thing. It’s something that comes naturally to Ian.

I never thought to hope that Ian would have that kind of impact on people.

Another great story . . . Ian spends his money to buy food and drinks to give to the homeless people who stand on the corner in our community. His idea. He always makes sure he has something in the car to give away. He buys sodas to give my husband and my daughter when they get home from work, just because he knows — has learned that they like it.

I never thought to hope that my son would be a nice person. He’s a really nice person.

Nicer than I ever imagined.

Today

My current hopes for Ian: a job where he can continue to learn, a little bit of money to spend on himself and others, opportunities to exercise and socialize, good health, a safe place to live, and times/places when he can just be himself.

At one time I had hoped Ian could drive, go to college, and get married. Those may all still happen, but my focus has shifted. What I want for Ian more than anything in the world is for him to be happy. And I think he is happy. He gets to do a lot of really neat things. He has practiced with the professional and college sports teams in our area. He has shot baskets with one of the best basketball players in the world Carmelo Anthony. I think that’s pretty cool.

Is it always easy? No.

Is it always fun? No.

Is it always interesting? Yes.

Friends have said that my son brings out the best in me. I know Ian has made me a better person. I hope both those things happen to you.

Where is the hope? It’s there. It’s all around you.

You set your hopes, you change your hopes, and your hopes may surprise you. But, it’s going to be okay. Actually, it’s going to be great.

I promise.

author
Jayne Dixon Weber, director of community services, NFXF

Jayne Dixon Weber
Jayne is the NFXF director of community education and has been a member of the NFXF team since 2007. She has two adult children, a son with Fragile X syndrome and a daughter. Jayne is the author of Transitioning ‘Special’ Children into Elementary School, co-author of Fragile X Fred, and editor of Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.