As a young person, my intent was to go to college and have a career. I was not a family oriented person. I didn’t really think about getting married or having kids. What is that saying? You make plans and God laughs at them.
I’m a stay at home parent. My son was diagnosed with autism at two and from that point I chose not to go back [to work].
I didn’t see the signs at all because in the first 12 months he met all his developmental milestones. He is what’s called a “regressive case.” It wasn’t until I started teaching in a 2 year old preschool class that I saw he wasn’t doing the same things as the other children. He wasn’t speaking or playing with the other kids.
I had several doctors say, “oh he’s a boy. They develop slowly.” I went to five different pediatricians and no one could tell me anything. At Wake County Services, there was a psychiatrist, psychologist, speech therapist, OT, and a teacher. At the end of the tests, they said, “I hate to give you the news, but it really looks like Autism.”
They automatically enrolled him in a public preschool program and had me choose a label. Some parents choose developmentally delayed or unexplained. I wanted a label that would give him the services he needed. So we chose Autism. In his preschool, they worked on communication and structure and other things associated with autism. He began to flourish. I started doing a lot of research on autism and whether you can recover from it. No one really had answers. …people were doing lots of different things. I found out that children who regress have a high chance of recovering.
And so we started on that journey. You go through different stages. In the beginning you go through a lot of denial. You’re angry and hurt and a little bitter. Then my husband and I decided, we need to get our head in the game. He’s two… My motto is that if one kid can be recovered, my kid is going to be recovered.
It’s been a long road, but he went from being completely nonverbal and having classic symptoms – like flapping, making noises, no eye contact, humming, no interaction, and doing strange things — to being mainstreamed. He’s now going into third grade. He talks. He reads. He writes. He’s considered high functioning. We’re at a point now where he’s really on that line of crossing over.
Sometimes it’s hard. In Christianity, you believe that certain things shouldn’t happen to you, but then you grow and mature. And you come to understand that bad things happen to everybody.
[My son’s situation] has probably made me a better parent. It has made me more patient, tolerant, and persistent. Sometimes I look at my son and think you are a blessing to this family because you’re teaching us something that we would not have learned.
I feel like we all have a journey in this life to work on our character. I think we’re all very selfish and unless something happens to change that selfishness inside, it won’t change. Sometimes we need to ask ourselves, What am I supposed to learn from this situation?
Having children has changed [my and my husband’s] character. If we had not had children we still would be selfish. When we first got married I was all about my career such to the point that I don’t know that our marriage would have lasted. We’ve been married 14 years. We’re now at a point of it’s just… It’s all about the team. My son has therapy every night of the week and so in order for me to come to a Zoomba class my husband had to take him to therapy. Our schedules are so hectic. I couldn’t do it if he didn’t pitch in.
My husband and I have changed how we treat each other because we have to rely on each other… because of my son and because of my husband’s recent diagnosis with MS. My husband always says to me, “I’m so grateful that you have stayed with me.” “Why would I not stay with you?” I ask. Research says that a lot of people divorce if a spouse is ill or when there’s something wrong with a kid. It’s brought us closer together.
We’ve had to make sacrifices. We’ve had to change our lifestyle. We live a moderate lifestyle. We take nothing for granted now.
I didn’t want to have a second child. I’m an only child. But my daughter is such a blessing. She is such a joyful sweetheart and she is so good for my son. He loves and adores her and is tuned into her. They play together and laugh at each other and give each other hugs. She’s helping him develop and grow.
It’s a different life than I imagined. It’s enriching… I wouldn’t give it up for anything. I do struggle sometimes though because I have girlfriends that are climbing to the top… a doctor, a lawyer, an Indian chief. There are times I feel like, man, did I miss the boat? Would I have been up there too?
It’s difficult — especially when there are no financial rewards. There’s no pat on the back for doing it. It really is a thankless job. And to be a parent of a child with special needs, it’s a thankless job and a financial burden. You don’t always have money to do things that other people do because your money and your time are going into therapies and medications and supplementation, special camps and this and that.
This journey that we’ve been on [with my son]… it’s been a crooked road. It’s been a matter of joining this listserv and meeting that parent and talking to people you never would talk to and going places you never would go… I’ve learned how to become a teacher, scheduler, planner, researcher… almost a jack of all trades.
There’s nothing that would have prepared me for this moment in time except having faith that whatever comes your way, you will be able to handle it. You know? You will get through it.