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EARLY CHILDHOOD FAMILY INFORMATION AND RESOURCES

Advice to Parents

Base Decisions on a Vision for Your Child's Future

By Judy Swett, PACER Early Childhood Advocate, 2009

When you first discover that your young child has a disability, it can feel overwhelming. Eventually, however, you find your bearings, see the long view, and begin to ask the questions: Where do we go from here—and how do we get there?

The specific answers, of course, depend on your particular situation. Certain principles, however, can guide you as you discover that decisions made now have long-term implications for your child later in life.

For Judy Swett, one of PACER’s early childhood parent advocates, the journey began 23 years ago when her daughter Joanna was born 10 weeks premature. With developmental delays and developmental ataxia, a brain abnormality that affected her balance and coordination, Joanna faced an uncertain future. “The only thing the neurologist knew for sure was that he could not tell us how this would impact her life,” Swett says.

That was when Swett realized it was critical to have a vision for her child and to make every decision based on it. “I decided to treat her as if she’d be able to do everything,” Swett says. “I was determined that she would learn to walk and run and do all those things other kids did.”

That realization led to her first insight. “Decisions you make along the way will support or detract from the vision you have for your child. Don’t settle for less. Even not knowing your child’s potential, maintain high expectations,” Swett says.

The path wasn’t always easy, but Swett didn’t walk it alone. Guiding her was her second insight: Seek inclusion and enlist the support of the community.

“I assumed Joanna would benefit from being involved in activities that other children in our neighborhood were involved in,” Swett says. That meant T-ball and softball, as well as swimming and gymnastics lessons. From age 2 until she went to kindergarten, it meant attending an Early Childhood Special Education (ECSE) classroom program and finding supplemental support. “The primary goals on her Individualized Education Program (IEP) were in the areas of speech-language, yet ironically, she was the only child in the classroom who had any language skills,” Swett recalls. “In order to give her time with typically developing peers who could encourage her communication skills, I enrolled her in our church preschool program one day a week.”

When it came time to choose a kindergarten program, it also meant looking for a school that valued inclusion. “As it became more apparent that she was struggling with math and reading, we added some time in a resource room so she could get some one-to-one instruction,” Swett says. “I learned to work with her IEP team to modify her goals and services as the academic expectations became more challenging.”

In junior high, Joanna’s need for additional educational support became even more apparent—and Swett discovered a third principle: Find other adults to play a role in her development. “Joanna was very firm in her desire to be included in challenging classes. She had a great case manager who helped us to see the need for Joanna to learn how to advocate for herself with teachers. This was great training for her high school years and eventually for when she went to college,” Swett says.

“As Joanna entered high school, we had to work a little harder to include her in the advanced curriculum so she could take international baccalaureate classes,” Swett says.

“I learned the value of hiring tutors,” she adds, noting that the vision she’d had for her daughter was coming true. “Because we had set high goals from early on and had not set any limits on Joanna, she had no limits on herself,” Swett says. Her next goal was college and a career in child care.

It all paid off. From a tiny preemie, to a toddler with a diagnosis of developmental ataxia and later pervasive development disorder, to a family and community that never gave up, Joanna graduated from St. Paul College in December 2008 with an associate degree in child development and a 3.95 GPA. Joanna is now an assistant teacher at the childcare center where she worked in college.

“Joanna has been successful because she learned to see herself as having different abilities rather than a disability,” Swett says. Many people—from school, the community, and the college—were involved and supported Joanna along the way. “Together we created a positive vision for her future and took the steps needed to fulfill that vision.

Have High Expectations for Your Child

"High Expectations" is a 10-page booklet for parents who have just learned their child has a disability. Written by PACER parent advocate Carolyn Anderson, it explains that "having high expectations when raising a child with a disability requires challenging yourself, your child, and others to do more than simply assume that a disability limits a child" One copy is free to Minnesota families of children with disabilities. Additional copies are $3 each; $2 for orders of 10 or more. Order php-a34 by visiting PACER.org/publications .

I Wish I Knew Then What I Know Now

Spring 2007

If you could fast forward into the future, would you want to know now some of the insight that you’ll gain over the years as you raise your young child with a disability? Would you like to have the perspective of time and experience today?

There’s no magic time-travel machine that can give you that view, of course. The next best thing, however, might be insights from parents who have been through the early years of raising a child with a disability.

Three of PACER’s parent advocates who now have teens and young adults with disabilities share their views about the challenges they faced when their children were small. Here’s what they wish they’d known then.

Barb Ziemke, mother of an 18-year-old son with a developmental disability

I wish I had...

... taken more time to enjoy the satisfying moments of being a parent. As I look back at photos, I think “he was doing pretty well as a 2-year-old.” Focusing on learning about my son’s disability sometimes didn’t allow me to just enjoy his 2-year-old-ness.

... lightened up a little and not taken everything so seriously. Some of the things I thought were so urgent at the time weren’t as urgent as I thought.

... looked at things more holistically and devoted more effort to building informal social supports with the family and community. It’s the people you have relationships with who will provide support for your child in the long run.

... had higher expectations of my son, especially around responsibilities, chores, and contributing to family life. I let him off the hook too much because things were more challenging for him or because I didn’t have the time and energy to supervise him.

... trusted other people more with my son and taken more risks to assume that others would know what to do with him in a social situation. I felt like I had to be there to take care of him. People would have figured things out. I assumed family wouldn’t want to be “burdened,” but I think many of them would have enjoyed it and risen to the occasion. I didn’t give them enough chances to do that.

... done less apologizing for my son’s differences and the extra challenges that they brought to the situation. It’s nothing to be apologetic about because someone is different. I wish I’d seen disability as a natural part of life and expected that others would, too.

Curtis Wenzel, father of a 14-year-old son with autism spectrum disorder

I wish I had...

... realized that the real experts on our son were myself and my wife. Doctors, teachers, and others might have good intentions and expertise, but ultimately, we are the ones who have to make the decisions and who have the responsibility for raising our child.

... known that my son was okay, that having a disability didn’t mean he would have a terrible life. Some days you see the happiness that he has and the richness of his life, other times you see the limited aspects because you are dealing with a problem. I now understand that whatever he experiences, he is experiencing what it is to be a human being. I really am convinced all human creatures basically have that, no matter what challenges they face.

... discovered earlier there was a specific process for receiving resources through the education system and elsewhere to assist us.

... known it was okay to be mad at my kid with a disability and not feel guilty for having a normal human response to what can be really challenging behavior.

... understood how much you have to be confident and straightforward about what your kid’s needs are without becoming a nervous Nelly or shrill, and how you need to learn to work cooperatively with people.

... known it’s better to learn how to forgive people who act as though the disability is your fault than to bank that flame and keep an ember going. You have to forgive people for their lack of knowledge.

... figured out earlier that the disability was something he was going to have to live with, that I wouldn’t be able to “fix” him. I’ve realized this is who he is—and there’s a lot that’s positive about it. I find my son with high-functioning autism tends to be honest, loyal, and has a great amount of information available at his fingertips. Because of his literalism, he has unique perspectives.

Renelle Nelson, mother of a 26-year-old son with developmental delays and mental health needs

I wish I had...

... picked my battles. When you have a child with many needs, you spend a lot of time focusing on that to the detriment of others. It takes on a life of its own. If you can keep it in perspective and figure out how to prioritize what is essential, everyone is better off for it.

... asked my family, “What do you think you can handle? What is most helpful to you, and what can we do to make it happen?” I didn’t do that, but I wish I had planned family meetings and received everyone’s input.

... networked with other parents more. You are so into the situation of your own little world. Networking would have given me a broader perspective, pulled me out of the little hole I was in, given me more opportunity for informal support—which I needed but didn’t realize I needed.

... put as much priority on setting aside time for myself as being the glue in the family.

... worked harder to develop a cadre of caregivers for my son. I was a proud parent and thought I could handle it all. In hindsight, I think my son and I would have benefited more from having a more comprehensive system of care around him, whether it was professionals or a network of babysitters.

Words from the Wise

Parents of children with disabilities share lessons learned about relationships, communication, and life.

Having a child with a disability changes many things. Your vision for the future may shift. Your daily routines may change. Your finances can be stressed. Your marriage may even experience a considerable strain. Tiny cracks in a relationship can become major chasms under the pressure of it all. Differences that didn’t matter before suddenly become significant. Differences like how you handle emotions, or make decisions, or communicate. Many parents of children with disabilities have been down this complex path. Five of them share their stories and wisdom about handling communication challenges with spouses. (Names have been changed to ensure privacy.)

Lauren: I thought my husband wouldn’t help me with our child with a disability. So I took charge of all the decisions. I eventually learned that he thought I wanted to do it all and I wouldn’t let him help, so he didn’t participate. Once I realized that maybe he wasn’t participating because I didn’t leave him any openings, I sat on my hands...literally. Then he started filling the silence with what he was thinking.

Abby: When our son was diagnosed with learning disabilities at age 6, it was a dream that was squashed. My husband’s first comment was, “Will this go on his permanent record and follow him through college?” Len is always looking at the future, I’m looking at today. I’m outgoing, want to talk about issues, and am not afraid to deal with conflict, especially during IEP meetings. He’s analytical, quiet, and reserved. He has attention deficit disorder himself, so he’s not always with you where you are in the conversation. It can create conflict. We still try to talk through it and try to have each other recognize when we might be hurting each other’s feelings.

Chris: When our son with disabilities was sick in the hospital, it was a very stressful time for us. I think one thing that helped was just recognizing that there were going to be “break downs” and that we were not both required to be the strong one all of the time. We had one particularly low period, when neither of us could really function or be there for the other person. At that point we had to rely on other people, not each other, and then come back together when were a bit stronger.

Jill: I think it helps to understand three things: 1) There are many acceptable ways to deal with situations; 2) the behavior that comes naturally to you may not fit your partner; and 3) your partner’s feelings are as legitimate as yours. For example, when we lost our baby girl, I needed to talk, talk, talk about it. My husband coped by trying to block it out. Fortunately, there were people in our lives who helped us identify and name those differences. I found I could safely pour out my heart to a friend and my mother-in-law, but just “be there” without words for my husband. Eventually, as a couple, we mellowed to a meeting point where we could share our individual perspectives as individual perspectives.

Jeanne: My advice is to be proactive. Before you have a problem, work on or participate in classes around communication. When I remarried, I knew blending a family could be traumatic, so we took a marriage and family course on communication for blended families. It was great and saw us through many a bump in the road. It helped us find support from other families. Also, don’t isolate yourself. Talk with others, and you will find out there are more people like you than different from you. You will learn some great tips!

Improve Your Communication Skills

Whether you are talking with your spouse, a relative, a doctor, or an educator, good communication skills can help things go smoothly.

What you say is part of communication,” said Carolyn Anderson, a PACER advocate. “But how you say it, and how effectively you listen are equally important.” She and others teach those skills at a variety of PACER workshops focused on communication with educators. Participants learn how to understand and improve their own communication styles; use effective communication techniques; help ensure an appropriate education for their child through communication; improve their listening skills; and resolve differences.

Tips from Dads for Raising Children with Disabilities

Surprise. Concern. Confusion. These are among some of the many emotions parents feel when they first learn that their child has a disability, but fathers and mothers may respond differently to such news.

With information, planning, and access to supports and services, families can learn to nurture new hopes and expectations while celebrating growth and accomplishments along the way. When you have a child with a disability, however, there is sometimes a tendency to focus on needs and services. Parents also need to pay attention to their child’s strengths and interests so they can find activities to do together and enjoy time as a family.

In the profiles below, three fathers share their reactions and responses to learning that their child has a developmental delay or disability, and what they have learned in the process.

Steve Mattson

Six-year-old Ben Mattson is an active, energetic little boy who loves grilled cheese sandwiches and adores his dog. It was a speech therapist who was providing in-home services for Ben who first suggested that the Mattsons have him evaluated.

“Both my wife and I were first-time parents, and we didn’t really have anything to compare it to,” said Steve, whose son was soon diagnosed with Autism Spectrum Disorder. “Your first reaction is denial. ‘What are you talking about? Not my son!’” he said. “I’m sure every parent goes through that. After that, confusion is probably the best word to describe it.” Together the couple faced their new reality and set about finding available resources. “My wife, bless her heart, dove into it head first,” Steve said. “She went on the Internet, and she pulled out the phone book and started calling people and asking questions. ‘What is available? Where are the resources? How do we do this?’ It was full speed ahead!”

With the help of caring professionals and their newly acquired knowledge, the Mattsons are doing what they can to help Ben be successful, and he is on track to enter elementary school this fall with his peers. Steve and Jessica have adapted to Ben’s public outbursts and learned how to prevent them by making plans well in advance, avoiding places that are noisy or crowded, and bringing along a bag of Legos to keep Ben occupied.

What else has Steve learned as the dad of a child with a disability? “Patience. Lots and lots of patience,” he said, “and my wife has way more patience than I do.”

Jon Hartmann

When their third child was born, Jon and Jessica Hartmann already knew instinctively that children develop at their own pace, but it wasn’t long before they began questioning Sam’s behavior.

“There was always this nagging feeling that something was wrong,” Jon said, “but, at the same time, there were all of these people around us — including our family doctor — who told us not to worry, that everything would be fine.”

When a professional in Minnesota’s early childhood Follow Along program voiced concerns about Sam’s development, the Hartmanns knew their concerns had been right. “That was our ‘Aha!’ moment,” Jon said.

Sam was diagnosed with developmental delays, fine and gross motor skills delays, ADHD, and unspecified learning disabilities. Jon reacted with worry, concern, and questions: What does this mean? How do we fix it? What can be done? His other reaction was to assume the role of protective husband and father. “I was concerned for Jessica because she was so worried and was quite emotional,” he said. “I had to try to keep myself together at that point and not show too much emotion. It wasn’t necessarily by design. I am not any kind of a traditional, detached, stoic guy, but I don’t like it when my wife becomes emotional. I was trying to remain as calm as I could as we learned more about Sam’s disabilities.”

It was an approach that worked for the Hartmanns. Once the initial shock subsided, Jon and Jessica sought practical solutions and adapted their lifestyle accordingly. When their fourth child was born, Jon became a stay-at-home dad. Now 6 years old, Sam is small for his age, but he is an active, growing boy who is involved in activities at his church and in the community. What would Jon tell other dads about his experiences? “I would tell them that you can still be immensely proud of your kids,” he said.

Matt Ripley

Matt Ripley remembers his first reaction upon learning that his newborn son Blake was deaf. “The first thing I asked was, ‘Is my son going to be able to play sports? Is he going to have the same opportunities as other kids?’” Matt said. “There are a lot of team-building activities that take place in athletics that really help you in life. I wanted to know if he was going to have the same opportunities I had.”

Matt was upset, confused, and filled with uncertainty. He wanted answers. Why had this happened? Was it something they had done? “When you first find out that your child has a disability, you are mad, you’re sad, you’re happy, you’re angry. You kind of go through all those different steps,” he said.

When things settled down Matt reverted to what he knew best — hard work. His wife Kelly left her career to focus on caring for Blake while Matt worked long hours to pay skyrocketing medical bills. Without even thinking about it, Matt had taken on the traditional role of “father as provider” while trying to emotionally support his wife.

“I guess I wouldn’t know any better,” he said with a laugh. “It is very important to me that my wife can put her full attention to working with our son. I also had to stay strong because my wife was quite emotional and I felt I had to be the rock to a certain degree and keep my feelings under control.”

While friends and family have been supportive, Matt knows it is impossible for others to understand what parents of children with disabilities deal with. “Everyone has struggles in life and I’m not a ‘pity party’ kind of guy,” he said. “I just go about my business. I think you need to keep your head up and stay focused on providing what’s best for your child.

Tips from One Dad to Another

1. Be informed and ask questions

“It is really important to get as much information as possible. The more you know, the better you will be able to support your child and your family,” Matt said. “We didn’t have any idea what to do in our situation. We just kept asking questions.”

2. Face reality

“You get to a point where you have to stop being in denial,” Jon said. “You have to get over yourself a little bit and realize that it is the kids who you are working for. There are always going to be a lot of well-intentioned people in your life who will tell you there’s nothing wrong, but if you listen to them, you can be late in the game of getting your child the help they need.”

3. Pursue early intervention

“If you are wondering about your child’s behavior, you need to get it checked out,” says Steve. “Because of early intervention Ben has come leaps and bounds compared to other kids.”

Jon agrees. “To me not knowing is worse than finding out what the issue is,” he said.

4. Have high expectations

“I think it’s important to not use the disability as an excuse,” Jon said. “If you know someone has a disability, it’s always easier to think that they can’t do something than it is to give them the benefit of the doubt. Kids sometimes need to be pushed.”

5. Do everything you can for your child

“To me the whole goal of fatherhood is to help your kids reach their full potential whatever that may be,” Jon said.

Matt agrees. “I look forward, I don’t look back,” he said. “It is a struggle at times but at the end of the day we want to know that we have given him all of the opportunities that he can possibly have.” Although the journey is often difficult, Steve believes you can still enjoy the ride. “Every day is a struggle to make Ben’s life better,” he said. “I try every minute of every day to help him, to encourage him, to try and lift him up. Having a child is a gift, it’s a blessing, and you need to embrace it.”