Where is the Hope?

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.

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 2 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.

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 can 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.

I went to a couple of local support group meetings in the year after my son 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 the doctor, 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 my son 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.

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 my son 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’ – that I could still speed this learning up. When he started school, the teachers and the therapists who worked with him got so excited about his progress, but then every IEP meeting brought me back to reality. He was making progress, but he was not catching up. I used to hate IEP meetings. I would cry for days before 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 my son 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 the 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 – the names of different kinds of trucks and how a fire station operates. Because of my son and his social drive, we know many, many people in our community by name – our mail carrier, the firefighter, basically, you name the profession, we know him or her.

The ‘ah ha’ moment came when I realized my son 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 my son could talk, could read, and could 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 is 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 this one ‘basket’.

My son works at our local grocery store. One day my husband was in line with my son. An elderly woman came up to my husband and said, “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. That is something that comes naturally to my son. I never thought to hope that my son would have that kind of impact on people.

My son 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 is a really nice person. Nicer than I ever imagined.

My current hopes for my son: 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 my son could drive, go to college, and get married. Those may all still happen, but my focus has shifted. What I want for my son 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 Carmelo Anthony – one of the best basketball players in the world. I think that is 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 my son 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 WeberJayne Dixon Weber
is the director of support services and education for the National Fragile X Foundation, and has been with the NFXF since 2007. She has two children—one an adult son with Fragile X syndrome, the other a typical daughter studying to be an occupational therapist. In addition to assisting on the NFXF’s “Adolescent & Adult Project,” Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book, Children with Fragile X Syndrome.


Send your questions to Jayne at: treatment@fragilex.org