Find Your Balance |
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| Find Your Balance |
By Parent Advocate Mark D. Hirschfeld
The doctor said, “I’m sorry, but we don’t have much experience with low incidence disabilities like autism. You might want to find a specialist who can work with your son.”
The term, “low incident disability,” hung in the air. I happen to have training as a social scientist, so I understood what the doctor was saying. He meant that autism, compared to the flu or strep throat, doesn’t affect many people. In that light, autism is, indeed, “low incidence,” even with the recently amended figures showing one in 150 children diagnosed on the autism spectrum.
Nonetheless, the term, though accurate in a medical sense, didn’t begin to capture how my wife and I felt about that diagnosis being attached to our son. You see for us, this wasn’t a “low incidence disability.” It was a very high incidence disability because it impacted our one and only beloved son. When we received this diagnosis in March 1999, we were truly devastated. The doctor told us that our son was likely to be in an institution for the rest of his life, and we should begin to prepare ourselves for that inevitability.
Thankfully, a lot has changed since that fateful day in 1999, for our son and for many in the autism community. If you’re reading this I suspect you may have had this news presented to you about someone you love. For us, incidence rates are immaterial. The disorder is very real. Autism is present in much of what we do and think about. It sometimes feels like we often have little else of pressing need to discuss. In short, we are living with autism.
For those of you who have had a child diagnosed with autism, my thoughts and best wishes go with you. I’m hesitant to offer “advice” to anyone who is taking on this journey, but I can share a few things we’ve learned in the almost ten years since Jacob’s diagnosis. My “top ten” list is the following:
- Your child will never have a stronger advocate than you. By nature I’m not a particularly confrontational person, but I soon learned that if our son was going to get the care and support he needed, I had to be more assertive. I learned that someone saying, “We can’t do that for your son,” isn’t the last word on the topic but only the beginning of the discussion. When it comes to the rights of your child at school or in state-supported services or with your physician, make sure you have explored every option. I’ve seen people spend more time selecting a new car than vetting whether a particular school is right for their child. Get educated and start advocating!
- If you have other children, you still have other children. Our daughter knew there were times when helping our son meant that she was going to have to take a back seat for a while. But we always made sure she had special time with my wife and me. One of the most pleasurable events she and I shared was a trip to Washington D.C.—just the two of us. Think about the time you invest with each of your children as a scale—it may tip to one side for a bit, but eventually it needs to balance out.
- And if you have a spouse, you still have a spouse. The rate of divorce in our society is, as we know, high. If you add a child with a disability into the mix, the divorce rates goes up even more. I know this will sound trite, but keep the lines of communication open. Find some times when you and your spouse can get away, and don’t feel guilty that you’re leaving your children behind—they’ll be just fine, and everyone will benefit from a needed respite. And don’t hesitate to seek out professional help to get you through particularly rough patches— qualified and caring counselors are out there waiting to help.
- If your child is young, start services now. All our children can benefit from supportive services such as speech, behavior and occupational therapy. Importantly, the medical literature suggests that starting these services early offers your child the best chance for a better outcome later in life. You’ll also learn that how your child responds to each intervention may be quite different than another on the spectrum. As one expert advises: “If you’ve met one child with autism, you’ve met one child with autism,” meaning that each child has very different needs to which programs must be made to “fit.” Don’t settle for any approach that feels too “cookie-cutter”—insist that the program meets you child’s unique needs, interests and style.
- Some relationships you had “before autism” may change—that’s natural. We’re fortunate that much of my wife’s family is nearby, and they’ve been very kind and supportive. Still, there are parts of what we’re going through that they simply cannot understand, just as there are struggles that hit them for which we may not be aware. If they make a well-intentioned but less than helpful remark, find a bit of forgiveness in your heart—those family ties can be important. You will also need to be wary that in your desire to “protect” yourself or your child that you don’t intentionally push well-meaning loved ones away. Finally, there is often a tendency to push all relationships aside that don’t have something to do with this disability. Relationships are just like foods—we need a good balance in both to maintain good health.
- This business can get lonely, so find places where you can create and find benefit in “community.” Whether it is a church, neighborhood or community group, or an online social networking site like Facebook, there are places where you can find help and support in the company of others. Several support groups are listed in our online Resource Center. We encourage you to seek out one that may fit your needs. You can also register on our site to create a new group.
- Enjoy each and every advance, no matter how small. It may not always be easy to see tangible improvements with your loved one in comparison to more “typically-developing” children, but that doesn’t mean those moments aren’t there. Look deeply into the life of your child—there is more to celebrate than one might think. I still vividly recall the day I came home from work to find that our son had learned how to count from one to ten—taught by his older sister. We celebrated that day, for him and for her.
- One way to help you through the “bad days” is to celebrate the “good days.” Recently our son was the victim of bullying, a problem for which children on the autism spectrum are sadly vulnerable. My wife and I suffered that day, but were comforted later that week when he gleefully played his saxophone in the band concert at his school. You need to hold onto those moments when you find great joy and happiness with your family, as they can help you get through the more difficult times you will inevitably face.
- There’s more help now than ever before. The list of local resources on this site is growing. If you have questions about any of the services, please call or email our Resource Center Coordinator Laurie Halpenny — she would be more than happy to be of service. We’ve already helped families think through everything from day care providers to respite care to summer camps to therapy dogs! No question is too trivial—we’re here to help.
- Although services today are good, we need to work together to make them better. Each of us has a story to tell and a passionate voice with which we can speak. Many services our family members need will require governmental changes, and we are the only ones who can help leaders within the various government agencies learn about our needs. Although many of us might not feel comfortable testifying at a legislative hearing or meeting with an elected official, we all can contribute in some way, such as writing a letter to your state senator or emailing family and friends about an upcoming legislative bill that would benefit our loved ones. In doing so you can feel a sense of satisfaction in knowing that you had a hand in helping others like you who are in need of support.