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Where’s the Manual?

By Dan Coulter

If your child is diagnosed with a significant disability, disorder or condition, it’s pretty common to start a frantic search for answers.  Is there a cure?  If there’s no cure, where’s the manual I can use to do exactly the right things to help my child make his life as good as it can possibly be?

How do I deal with his behaviors?  Can I help him change them?  Should I?  Should she be medicated?  Should she go to public or private school?  What kind of doctor should he see?  What should I tell her siblings?  Can I help him learn to support himself when he grows up?  What should I do about this and this and this?

My wife, Julie, and I went through this process twice.  Our son, Drew, has Asperger Syndrome (AS) and our daughter, Jessie, has Cystic Fibrosis (CF).  AS is a neurobiological condition on the higher functioning end of the autism spectrum.  CF is a genetic disease that tends to produce life-threatening lung infections and digestive problems.

Yep, we’ve had a double dose of “special needs.”  The good news is, our 22 and 20-year old kids are doing great and we’ve had big fun with them as they’ve grown up.  Of course, we also had tough times.  Some of the toughest were dealing with the unknowns.  But the more we learned about our kids and their conditions -- and found ways to make their lives better and their futures brighter -- the better we felt. 

There’s nothing that gives you a charge like helping your child master a skill or conquer a problem, especially if it helps put your mind at ease about his future.  And whatever a child’s challenges, a caring, determined parent (or two) can make a dramatic difference in her prospects for the future.

Thinking back on raising our kids, I thought I’d share some of the things that helped us.

GET MOVING

Start your search for answers quickly.  Even when you can’t see the end of the road, or know exactly where it will lead you, it helps to know you’re moving in the direction of helping your child.  For example, we attended a CF conference soon after Jessie was diagnosed and it helped point us in the right direction.  One of the first things we heard that stuck with us was to think of our daughter as a child first, and then as a person with CF.  Parents tend to treat kids differently if they see them primarily as patients.  On the Asperger Syndrome front, Julie also attended educational conferences whenever possible to learn more about AS.

NETWORK, NETWORK, NETWORK

Talk to professionals, foundations, support groups and gather as much information as possible from materials related to your child’s diagnosis.  If you don’t have a diagnosis or aren’t sure you’ve got the right diagnosis, search for information about your child’s symptoms or behaviors.   Drew had seven successive diagnoses before we got one that fit like a glove: Asperger Syndrome.  Looking back, it appears now that some of these diagnoses were influenced with the specialty of the doctor making them.  For example, a psychologist diagnosed “personality disorder.”  Of course, many of these diagnoses came before Asperger Syndrome was included in the U.S. Diagnostic and Statistical Manual.  Some of the best information we got came late in this process from a developmental pediatrician, who had experience with children like Drew.  If we’d known that such a specialty existed at the beginning of our search, we could have honed in on a more accurate diagnosis more quickly.

TRUST YOURSELF

You may see a battalion of specialists, but none of them will spend as much time with your child as you do.  Write down your concerns, observations and questions before a doctor visit so you can be sure you won’t forget anything.   If a professional’s diagnosis doesn’t match what you see in your child or their treatments don’t help, let them know.  If a professional doesn’t take your concerns seriously or doesn’t explain things to your satisfaction, it’s appropriate to search for someone who does.

I am NOT saying that you should diagnose your child yourself and shop doctors until you find one who agrees.  I am saying you should find a doctor or other professional who really listens to you and is willing to consider your input seriously -- and one who can explain his diagnosis and recommended treatment in a way that makes sense to you.

When Jessie was an infant, she had a number of symptoms that our pediatrician didn’t take seriously during her first year of life.  My wife took them seriously and started to research.  Based on reading Dr. Spock’s book, “Baby and Child Care,” at Jessie’s one year checkup she described the symptoms again and asked the doctor if our little girl should be tested for Cystic Fibrosis.  The doctor laughed off her concerns and said, “Don’t be silly.”  He was the doctor, so we listened.

After two more years of colds, ear infections, stomach problems and other symptoms, and while she was under the care of an allergy specialist, we had her tested and discovered that she had CF.  We could finally start getting her the treatment she needed.

GET ANGRY, GET DISCOURAGED, GET OVER IT, MOVE ON

We were angry at Jessie’s first pediatrician and beat ourselves up for not having her tested sooner, but that didn’t help us or her.  It was also natural to ask why she had to have CF, but that was a waste of time. What did help was finding good doctors and hospitals, learning as much as we could about CF and following an aggressive treatment regimen that included two sessions of respiratory therapy each day.   In dealing with conditions like CF and AS, there are times when you feel overwhelmed, that you just don’t know enough to make the right decisions.  If you find yourself feeling like that, remember that you’re not in this alone.  There are professionals and support groups and other resources available and you can learn a lot from them.  You’re also going to be learning more about your child every day.  You can’t gauge how well you’re going to do by what you know at the beginning of the process.  It’s bit like having a baby for the first time.  Some of it will be trial and error and everyone makes a few mistakes, but you’ll learn more and more of the answers and become more confident as time goes by.  As for doctors, you can find a gem the first time out, but if you don’t, keep looking. 

BECOME AN EXPERT ON YOUR CHILD’S SCHOOL

School was a joy for Jessie.  Less so for Drew.  A preschool teacher saw his problems interacting with other kids and suggested we have him tested.  At first we resisted.  He was such a bright little guy, how could there be anything wrong?  But then we saw her point and began our search for the right diagnosis and treatment.  During most of Drew’s early grade school years, we lived in a county with an exploding population –- and a school district struggling to build schools and hire teachers fast enough to keep up.  They simply didn’t have programs to support children like Drew, who got good grades but had trouble connecting with other kids. It wasn’t that the school administrators were bad-intentioned or negligent, but they were busy putting out fires.  Our son was smoldering, but he wasn’t on fire.   We were ready to start a search for a good private school when we moved to another part of the country and found a public school district with the staff and resources to really help a kid like Drew.  Through a series of diagnoses, he got support based on his needs, even before his diagnosis of Asperger Syndrome at age 14. 

But it wasn’t just that the school district was good.  Julie got to know the teachers and administrators.  She provided information to the school and served as a parent volunteer in a number of ways –- including ways not directly related to our son.  She found that establishing relationships with the school staff helped her become part of a team that took both Drew’s needs and the needs of the school into account.  This was often a key to working around obstacles. 

As a part of this process, Julie enlisted a number of angels in the school.  Angels are teachers or counselors or administrators who take a special interest in your child.  Someone who will look out for him and who he knows he can go to when things get rough.  Drew’s about to graduate from college and we take great delight in regularly getting in touch with these angels and giving them credit for all they did to help him succeed.

Julie also kept great notes of her interactions with the school, including Individual Education Plan meetings and other contacts.  Keeping accurate records helps when things are going well – and especially when they’re not.  For example, if you should find yourself in a school district where your child is not getting proper support, good documentation can help you work to correct the situation.  It’s our experience that it’s always best to be as positive as possible when working with a school.  Offering to serve as a resource rather than appearing to tell someone how to do his or her job has been a successful approach for us.

Also, frequent contact with teachers and staff helps you determine whether supports put in place to help your child are actually being delivered.  If your child is supposed to get speech therapy twice a week and it stops for some reason, you want to know immediately, not at the end of the year. 

When your child is not getting what the school agreed to or what the law requires, you many want to seek help from a parent advocate of a special needs support group.  For example, here in North Carolina, the TEACCH program provides parent advocates where children on the autism spectrum are involved.  Another good resource to consult about your child’s rights is www.wrightslaw.com.

If you’re moving, thoroughly check out the potential schools your child will attend and make them a significant factor in deciding where to buy a house.

KEEP YOUR EARS OPEN

Support groups, friends and Internet bulletin boards can all be great sources of advice.  We’ve benefited from all three throughout the years.  But we’ve also learned to check out informal advice with a critical eye.  People’s opinions are based on their experience, and their situations may be far different from yours.  For example, we love the expression, “If you’ve seen one kid with Asperger Syndrome, you’ve seen one kid with Asperger Syndrome.” 

So we recommend that you keep your ears open.  Listen to everyone, then do what makes sense to you.  The more time you spend with your child and the more you learn, the better your radar will tell you who has good insights.  The bottom line here is that whatever is diagnosed or prescribed or recommended by others, you as a parent have ultimate responsibility for making decisions for your child.  The better informed you make yourself, the better decisions you can make.

BE POSITIVE

Many kids with disabilities face a lot of rejection.  Having their home life be a haven of good feelings can be an important self-esteem safety net.  And while I wouldn’t wish a disability on anyone, you can find positive things in almost any situation.  For example, dealing with our kids' challenges has brought us closer as a family.  Also, if your child hears you complaining, you may make him an inadvertent messenger.  Consider the consequences of having your child say to a teacher or principal, “My mom and dad say that you’re _________.” (Fill in the blank with some unkind thoughts you’ve had about someone.)  Being positive and encouraging around your child can help him become a problem solver throughout his life.  

TAKE CARE OF YOURSELF

We’ve learned you can take better care of your child if you take care of yourself.  Finding some time for yourself -- and couples finding time to be together -- helps you come up with solutions to problems that seem insurmountable when you’re stressed.  If you think you don’t have time to relax or you feel guilty taking time for yourself, do it because it will help you help your child.  Really.

EDUCATE YOUR CHILD –- AND THE WORLD

One of my favorite themes is that raising a child with special needs is a 50-50 proposition.  You need to prepare your child to deal with the world, but you also often may need to educate the world about your child.  You can teach your child to modify some odd behaviors, but that won’t help him make friends if classmates avoid him because they don’t know why he struggles to make conversation.  Disclosing a disability is and should be a personal choice for a child and his family.  With that in mind, we’ve found that kids are often willing to befriend a classmate who’s different if you just share a bit about why he acts like he does.  Helping classmates, potential employers and others understand the reasons behind some of your child’s behaviors can sometimes make the difference between rejection and acceptance. 

IN CONCLUSION

These are some of the things we’ve learned in raising two kids with special needs.  Drew will receive his bachelor’s degree in May and has already started his job search.  He surprised us during college by starting a novel with a first chapter that impressed me as a writer.  Jessie has a double major in music and international relations and recently returned from a two-week seminar studying government in Washington, D.C.  She’s kept herself in such good health that she played in a college marching band her freshman and sophomore years. 

Sure, we worried a lot about doing the right things for our kids as they were growing up.  But if you’re like us, you’ll find at some point that you have the manual you wanted. 

You just have to write it yourself.

ABOUT THE AUTHOR: Dan Coulter is the producer of the video, "INTRICATE MINDS III: Understanding Elementary School Classmates Who Think Differently.” You can find more articles on his website: www.coultervideo.com.