A Special Word to Parents and Grandparents
We have had the opportunity to meet with many family members of those who have autism and it has been an honor and a blessing to hear their stories. These are wonderful individuals who have often faced adverse conditions to help their loved one obtain the supports they need to achieve personal growth.
There are many reasons why these families face uphill battles. Sometimes they run into administrators, insurance companies, physicians, specialists, neighbors, police, elected officials, lawyers or educators who don’t understand autism. Sometimes they encounter people faced with limited financial resources. And yes, sometimes they may even face people who are caught up in their ego or personality conflicts and choose not to help.
Regardless of why these challenges exist, they do, and that means that families not only must address how they will love and raise the child with autism but also how they will manage how to access what is needed and decide which intervention strategies are right for their unique situation.
Sadly, some research has been conducted that paints a negative light on the characteristics of those who have a family member with autism. The causes of autism have their roots in genetics so some commonalities may exist among parents who have a child with autism. At The Homestead, we prefer to understand these connections in positive terms.
Family members often display passion, drive and focus. They are seldom individuals who care little about their surroundings. They have a zeal for understanding their world and that can be witnessed by their choice of profession, their hobbies and how they interact with others.
These family members are often very intelligent and they see the world in more black and white than grey. They give great thought and consideration to their present situation and form opinions as compared to many people who don’t give problems much thought and fail to take a position on an argument or debate.
So when these individuals first discover they have a child with autism, they pour themselves into the pursuit of a solution. Of course, any parent with a child with a special need will seek a solution to the child’s problems, but frequently these families dive into this challenge with much greater passion, drive and focus than the traditional parent. They pursue possible solutions often at great personal expense. They advocate for change, create new organizations, seek alliances with key decision makers in government and education.
Without these characteristics, there may not be the availability of resources or the awareness that exist today. Almost every step forward in autism services and research can be traced back to passionate, driven and focused parents. So we should all applaud this response from family members.
Yet it also must come with a warning. The very thing that makes these families so successful can also make it difficult for them to find a sense of balance. Spouses try to understand why they can’t seem to do enough or the right thing or why their mate fails to attack this challenge in the same manner. Divorce rates skyrocket among families of a child with autism. Siblings struggle to understand how to create their own identity in light of the challenge of a brother or sister with autism.
So we ask you as a parent, grandparent or sibling of a person with autism to seek balance with the same zeal you seek solutions for your loved one. You have been given the wonderful opportunity and also the incredible challenge to love a person with autism, and you will only make it through this journey if you can find balance.
Balance must be explored in how you relate to your significant other, how you relate to the other children in the family and other family members and, most importantly, how you maintain a balance in your own personal life. We are all multi-dimensional beings. Monitor your physical, mental and spiritual health. Make time to go for that walk, enjoy a date with your partner, meet a friend for coffee, plant some flowers in that garden, read something unrelated to autism, yes, even take up that hobby you put away when life got busy.
Because if you fail to take care of yourself you won’t be able to manage all that the person with autism will require of you in the long future ahead. This is a marathon and not a sprint. Your loved one needs you for the journey that is ahead for both of you.
Not One Answer and Not One Outcome
A diagnosis of autism may seem like a death sentence to some. But don’t be quick to predict that child’s lifetime. Yes, some may require a lifetime of supports but others will learn and grow far beyond where they live today.
Many families begin the journey expecting to find the one answer to solve the child’s problems. They soon discover there are so many different solutions offered by traditional and nontraditional experts that it can be overwhelming sorting through the material.
Believe it or not, there is no test that will help you understand just how far a person with autism will grow. We simply don’t have the ability to predict how much a child will overcome the challenges they face.
One very large factor is how much a child will naturally grow through the developmental process and better understand his or her world. If we simply did nothing other than what is presented to typically developing children, a child with autism may still overcome at least some of his or her challenges due to the developmental process.
However, please note that The Homestead does not encourage this response. So, what do we recommend?
Families, educators and researchers are learning that each child is unique. Some families share that a child has benefited greatly from a teacher who used visual structures to communicate with the child. Other families report that the child responded to special diets or vitamins. Some parents share that intensive applied behavioral analysis programming was the answer to their child’s progress. With each new conference it seems that families have another strategy to try out with their children.
We encourage you as a family member to not be overwhelmed with your choices. Study some options and be willing to try them out. Work with the interdisciplinary team through your educational system or providers. Consult your network of friends, educators, physicians, psychologists, psychiatrists, therapists and other specialists. And then test the ideas that make the most sense to you. Consider how you can quantify a change in the individual’s life. Then monitor the child’s progress with these metrics. Be willing to establish a reasonable timeline for change, and if this strategy doesn’t produce the desired results, be willing to try something new.
Find the Joy
People with autism grow up experiencing and living in a world that is different than the rest of us. What is “normal” to someone with autism isn’t “normal” to us. So it is unfair to project that what gives us pleasure, stress, happiness, anger or peace will be the same for a person with autism. This doesn’t make one better or worse than the other, just different.
The sooner we recognize this key difference, the better we will be able to help those struggling with autism. Perhaps the best we can all do to help people with autism is to learn enough about them and their disability to meet them in their reality.
Families who have a loved one with autism in their midst have shared the many challenges they face but they have also shared the incredible joy and love they have found through this experience. Sometimes it takes looking at this situation from a different vantage point, but there is and will be reasons to celebrate, rejoice and continue to love this individual. Wouldn’t it be interesting if you learned a lot more about yourself? Could that be the gift given to you by this special relationship?
Enjoy the journey.