by Jane Grillo

All I want for my nearly 4-year-old son Joey is to have a childhood. Well, that’s not all I want. I want him to grow up to be an independent, responsible, mostly happy member of society. I want people to like him and not judge him. I want others to accept him the way he accepts everyone else.

So, every time I take him to the library, the public pool, the grocery store or the pediatrician’s office,
I vow to help him interact with other children.

Joey used to look like other babies, so I could hide behind comments from passing adults, "Oh, look he’s sleepy."

Now that he is passing the toddler stage his disabilities are more obvious. He doesn’t speak or hold his head erect. He doesn’t sit in a chair or walk around. People look at him through the sides of their eyes. Some just plain stare. It is up to me to help those people understand and, more importantly, help their children understand.

Children are not afraid to come up to me and look at his chair and look at Joey and ask, "What’s wrong with him?"

That is where one of my many special needs parenting jobs kicks in – public education and advocacy. Depending on the age of the child I will say something like, "He has cerebral palsy. That means that his arms and legs and mouth don’t work right. He can’t play with you the way you are used to playing, but he likes you and would love to watch you play." Joey is usually staring intently, head askew, at this child who has approached him.

Everyday Excursions

Lisa Graessle of Marietta is a single mother of three living with her parents. She is raising Megan, 13, who has cerebral palsy and autism, and 11-and-a-half-year-old twin brothers, Ian and Brennen.

She acknowledges that situations such as being in church can be stressful for her family. "Sitting quietly for an hour for services is a big challenge for Megan and is one skill that will take years of practice," Lisa says.

Lisa also found that formal faith formation classes – Sunday school – for Megan was also something that at one time was not a priority since the day-to-day challenges and issues of parenting a special needs child can be overwhelming at times. Then her church, Holy Family Catholic Church in Marietta, began a special needs class that meets on Monday nights instead of Sunday mornings. By having the classes Monday nights there are fewer children, less over-stimulation and noise, making it much easier for Megan and her three classmates. Because of the church’s assistance and participation, Megan has been able to receive her sacraments of confession and communion.

But church was only one place causing Lisa to worry about how Megan’s behaviors affect her brothers out in public. She is planning to help her sons get involved with the local chapter of sibling support to help them cope with being the typical siblings of a special needs child.

"It is getting harder now that she is older," admits Lisa. Like when she loudly announces her recently acquired skill to her brothers in a crowded shopping mall – "Boys, I just went potty." Lisa says the announcement will also be made to every passing stranger. It would have been easy to let that embarrassing moment get to her, but Lisa has learned to put things into perspective; a few years ago potty training Megan was not even an option. "I just keep thinking, she’s potty training," she says. Leaving little to chance, Lisa still carries an emergency bag in the car with diapers and a change of clothes.

She explains it to her sons like this: "I get frustrated not with Megan, but with Megan’s package." She says it is very important to her that everyone, including herself, understands that Megan, the person who is inside Megan, is not doing anything she has any control over. It is the symptoms of her disability – her package – that creates the turmoil in their lives.

"We like to buy season passes to places like Six Flags and Zoo Atlanta so that we don’t feel bad if Megan is having a bad day and we have to leave early. This way the boys know that we can come back again."

- Lisa Graessle, single mother of Megan (left), 13, who has cerebral palsy and autism, and 11-and-a-half-year-old twin brothers, Ian and Brennen.

Fortunately, dealing with public reaction to Megan has become "second nature." Her standard strategy is to give "the speech." Lisa finds it is the best way to address the problem without having to go up to an individual and try to explain. In the speech, Lisa will explain Megan’s behavior out loud, remind the audience of how far Megan has come and how well she is doing. Though Lisa technically delivers the "speech" to her boys, she looks directly at the adults. Many times the adults will get embarrassed and look away. The boys know this speech by heart and will often moan each time they hear it, even though they know it is not said for their benefit but for all of the adults who don’t know how to be understanding.

Lisa has a couple of other tricks up her sleeve. "We like to buy season passes to places like Six Flags and Zoo Atlanta so that we don’t feel bad if Megan is having a bad day and we have to leave early. This way the boys know that we can come back again," she says. Also, the more they go they less unfamiliar it becomes to Megan.

Saturdays are sacred. "It is the only day we don’t have therapy appointments or school or my work – it is the day that we don’t have anywhere to be. We can go someplace or stay home – whatever," she says.

Doctor’s visits are another tough challenge, especially when Megan is not the one who is sick. "I try to schedule doctor’s office visits for the first or last appointment of the day so we’re not in the waiting room long. I’m using a portable DVD player to keep Megan busy. That seems to help," she says. But sometimes, when all of those strategies are not working, things go bad. "I have been told by a nurse that we were being too loud," she says.

Vacation Time

Ken Reed, who is the proud parent of five boys, Jason, 24, Paul, 23, Christian, 12, Jordan, 10 and Aaron, 8, says that it is about boldness. "You have to push yourself to put yourself in social situations," he says. Ken credits his wife, Vanessa, with an even bolder spirit than his when it comes to helping the outside world understand their sons Christian and Jordan, both of whom are autistic.

"There was a time when we were going places and we felt that we had to explain our children and apologize. And there was a time when we didn’t venture out," Ken says. But the family slowly learned that they didn’t need to tell everyone "our child is autistic."

They could just go places. But only after they learned how to go places.

Ken says that there is a process families go through to get over being uncomfortable in public. Basically, it goes: acceptance, finding your courage to venture out, finding the support and education you need, and then creating the "procedures" needed to make venturing out as enjoyable and smooth a process as possible.

Take, for example, the family’s recent fourth trip to Disney World this summer. Christian is interested in planning the trip and organizing things, so Ken and Vanessa encourage him to do the things he’s good at. It helps him to feel good inside and feel good about the trip. "He knows exactly how we’re going to get there, what direction we’re going and how long it will take for each step. He’ll do all the research. He even has our next spring break planned," says Vanessa. "Jordan is the active one. He is the acrobat. Planning isn’t his thing, going is his."

Disney World gets an A-plus from the Reed family for its ability and caring when it comes to children with special needs who visit the park. Vanessa tells a story about one visit: "Our boys can’t tolerate crowds or waiting, so we get a pass. But then, you know, one time I had them wait in line and tried to prepare them. OK, Miss Teachable Moment Mama," she jokes. Then she realized that her teachable moment plan was not working out and a meltdown was beginning. "Christian doesn’t understand waiting. We moved to the fast lane. Just as we were about to get up to the end of the line, Mickey and Minnie were leaving. An employee came over and took Christian aside and she asked his name and said, ‘Christian, I need you to calm down. I need you to help me with Mickey and Minnie. I need you to help me lead them on stage. But you have to stay calm.’ The next thing I know, there is Christian holding Mickey and Minnie’s hand, leading them on stage. The kids were cheering. It was like he was the reason they were there." Christian was calm and Disney World earned seven new fans in the Reed family. They go every year.

Once they get back to reality though, Vanessa says, "you have to plan and look ahead to the possibilities." They call ahead to talk to the barber and explain things that upset their kids. "You can’t just go and put them in the chair," Ken says. It helps too, if you have flexible jobs.

Ken is a minister at Pleasant Hill Baptist Church in Lawrenceville. He took over the boys’ therapy schedule last year so that Vanessa could get back into the workplace fulltime. Sometimes even parents need to be put in the fast lane before a meltdown begins. Burnout is something the Reeds take very seriously and help each other to avoid.

As their experience and education about autism and special needs parenting grew, they have become resources for other parents. Both have participated in the statewide legislative advocacy group, Partners in Policymaking. Ken became a Parent Mentor for the Division of Exceptional Students of the Georgia Department of Education when the program began in Gwinnett County. Although he does not serve in that capacity today, he still gets calls from people asking his advice. He says that support organizations such as Parent to Parent and SPECTRUM (The Autism Society of America Greater Georgia Chapter’s SPECTRUM – Sibling Support Group and Asberger’s Support Group) have been invaluable. "As we grew into this thing the people we’ve met along the way have helped. We wanted to find a way to give back. As we get, we give," he says.

Ken has also tried to look around the landscape, mainly his workplace, and help others to understand and feel comfortable when they are sitting next to a disabled person in a church pew. He is in the process of setting up and teaching a course in an initiative with several other area churches. This effort is all about helping churches welcome the disabled population into their congregations. "Eighty-five percent of people with disabilities don’t come to church," Ken says.

Help is Available

Moshe Manheim tries to help families find the best ways to carry their unique packages. He is senior clinical social worker for the Marcus Institute and has a private practice. He is often the first one to break the news to worried families that their suspicion that something is wrong with their child’s development is warranted. "It is rare that a family is prepared for parenting a special needs child," he says.

Manheim specializes in teaching parents behavioral techniques to use with their special needs child. "Kids with special needs learn differently. We have to learn how to speak to them in their own language," he says. One of the most important things parents do is learn their child’s limitations. Instinctively, parents begin to understand how to strategize to make outings successful experiences for everyone.

"I always encourage parents to pick their battles," he said. Manheim said that it is very important for parents to really find out what issues are worth the work. "Let’s say you want to focus on managing your child’s behavior at Kroger," he said, "you have to figure out what the battles are first." A few examples of the lessons contained in a trip to Kroger could include: a child’s inability to wait in line, a child’s hypersensitivity to crowds, or behavior that is innappropriate, loud or wild. Once Manheim understands the root issue, then he teaches the parent which behavioral weapons to try.

"Many of us do exactly the opposite of what we do to get children to comply," he said. In other words, set the example you want your children to follow.

Here’s an extreme example from my own life with my 18-year-old daughter who is typical developing: When she was little, I used to punish her for using rude language, until I realized that I was calling people ugly names while driving. If I didn’t want her calling people names, then I shouldn’t model that behavior. This seems like an obvious thing, but day to day life can gloss over the details. I remember the day I realized what I was doing, and I was amazed at how, looking through my daughter’s eyes, I could be sending such a mixed message. Today I understand that with a special needs child, getting the message across clearly, over and over again, is even more crucial.

Parents who don’t have a social worker, pediatrician or therapist working with them can, according to Manheim, get information on behavioral weapons from other really good sources: parents. He said networking with other parents in support groups is an excellent way to learn new ways to work with your children.

After a parent knows which issues to tackle, then, Manheim stresses, "know your child’s limitations. An important question to ask yourself is, are you asking kids to do something they are able to do?"

Support is important too. Manheim said he spends more time working with moms and dads because, "the kids are going to do as well as mom and dad are going to do." If there are marital or emotional issues crowding a parent’s ability to focus on their children, those problems usually manifest themselves in the children.

Manheim said that getting a little time off for parents, in the form of respite care, is invaluable regardless of the abilities of the parents. "The worst thing I hear from families is, ‘we’re from out of town,’" he said. Moshe said every caregiver needs to take time to replenish their energy and to check in with themselves every now and then.

"Each spouse needs to give the other one a day off or a weekend off. Especially men, they tend to be less involved with the day to day care of a special needs child and it helps them appreciate all the things the other spouse does," he said. And, as one of Moshe’s clients says, "Date your mate." Giving time to the relationship is important as well. "You know the saying - if mama ain’t happy, ain’t nobody happy," he said.

And then, caregivers have, in addition to everything else, another thing to learn – ask for help. "There are a ton of people who acknowledge one of the hardest things is to ask for help. Once you can do that it’s huge. People are so willing to help when asked," he said. It is okay to ask and usually, everyone, from the caregiver to the special needs child to the person who lends a helping hand benefits from the experience. There are also many support organizations that can help you find that helping hand once you are ready to reach out.

Folks like Manheim help fill those needs too. The good news is, in his view, and what he hears from parents, the public is becoming more accepting of the disabled population. So it is becoming a little easier to find help these days.

Joey recently attended a library story hour. As I entered the building, I thought about all the things I had discussed with other parents and professionals. There was no room for Joey’s chair in the circle and so, boldly, I went where no wheelchair had been before and knelt down and asked children to scoot over so Joey could join them. They didn’t even give me a second glance. They looked at Joey’s chair though. They eyed the wheels. Then one little boy whispered, "What’s wrong with him?"