PARENTS OF CHILDREN WITH SPECIAL NEEDS SHARE THEIR ADVICE, EXPERIENCES & WISDOM

The Doughty Family

"You never really know how much you can handle until you're doing it," says Mike Doughty, whose two daughters, Emma (7 and a half years old) and Paige (3 and a half years Old) have both been diagnosed as profoundly deaf. He says the experience of having children with special needs has opened his eyes. "Sometimes I will stop and look back and think, 'Wow that was really hard'. But, it's just different."

"And that different is ok," adds his wife, Theresa.

Mike and Theresa learned that their first daughter, Emma, was deaf when she was slightly more than a year old.

They were surprised, they recall, since there was no documented history of hearing problems in their family and Emma passed her newborn screenings and was progressing at a normal pace. Upon hearing of Emma's diagnosis, the Doughtys contacted Early Intervention and then chose to learn ASL (American Sign Language). "We decided early on that it was important for us to communicate with our children, which sounds silly when you say it out loud," says Mike. "We just knew we needed to learn it." Mike and Theresa enrolled in classes at the Rochester School for the Deaf, which is now where Emma and Paige attend school. This fall will also mark Theresa's second year as President of RSD's Parent Staff Association (an organization similar to the PTA).

The Doughtys say that having deaf role models for their children is important and that they are blessed to be living in Rochester. "We go to Marketplace Mall and our kids see people like them," says Theresa. "We visit NTID (National Technical Institute for the Deaf) and they see college kids just like them."

"Emma is very proud of who she is and is proud that she is deaf and that her sister is deaf," says Mike. Theresa adds that when Emma sees another deaf person she wants to go and say hi. "She wants to tell them 'I'm deaf, too!'" Their children also see their share of deaf role models at school. "It's a good thing for our kids to see deaf adults in leadership positions, doing things that everybody else does," says Theresa, who adds that the programs through RSD allow her daughters to have access to other deaf kids and deaf adults. "Emma gets to talk to Dr. Mowl like they're friends," she says, referring to RSD's Superintendent Dr. Harold Mowl, Jr.

Both Theresa and Mike work in the education system and say that their experiences with their daughters have helped them in the workplace. "I feel like it's easier for me to understand what families with kids with disabilities are going through and to see things from their perspective," says Mike. "Everybody's situation is different, but if you've had the experience of coming to terms with your child not being like everybody else then it helps you empathize."

In many ways the Doughty family is just like any other. "I thought I knew a whole lot about parenting and then I had kids and I realized I knew absolutely nothing about parenting," says Theresa – her sentiment is one that many parents can relate to. "Having my daughters has made me realize how hard it is to be a parent, and have a kid with different needs." Mike and Theresa say that having gone through the experience once (with Emma) made it easier the second time. "When we found out our second daughter, Paige, was deaf, we were relieved," says Mike.

While the Doughtys had hoped for a healthy baby, they also were hoping for a deaf baby, something that would unite their children together. "We just wanted them to be the same," adds Theresa.

Of course there have been challenges and hard work, but in the end Mike says that all parents have their share of challenges to deal with and that their challenges are just different. "This isn't what I imagined being a parent to be like, but it's great," says Mike. "I wouldn't want it any other way."

"And we don't know any other way," adds Theresa.

"This is just how it is for us. Lots of our friends are like, 'Wow, I don't know how you do it.' I tell them, 'You do it because you have to and you do the best you can.'"

The McKenna Family

"Matt will always be my personal hero," confesses Anne McKenna, mother of 18-year-old Matt, who graduated from Brighton High School in June – a feat that the McKenna family never takes for granted. "After all, not too many graduates have survived infant meningitis, narrowly escaped death, endured frequent seizures for 14 years, and spent their 15th birthday recovering from brain surgery."

In December of 1991, when Matt was only 5 months old, he suffered from bacterial meningitis that permanently damaged tissue in his brain and resulted in lasting side effects. "By age 3, we learned that seizures were the side effect and would occur quite often over the next 12 years," Anne recalls. Though medication helped to suppress his seizures to an extent, they continued to occur, especially during growth spurts or after physical activity. "The occasional seizures were unnerving and unsettling," says Anne. "Even worse was knowing that they occurred when we were not with him."

Matt tried not to let the seizures disrupt his active lifestyle. He played sports, where his parents took on roles of coach and manager, and when they weren't doing that, they were cheering for him on the sidelines. "I was always grateful for the understanding coaches and other parents who were always concerned for Matt's safety, sympathetic, and never treated Matt like he was all that much different from any other player," remembers Anne, who said that she met some of her closest friends on those sidelines.

However, unlike a normal child, Matt and his family made regular trips to Strong Hospital for EEGs and MRIs, where doctors would broach the subject of Matt undergoing brain surgery to remove the tissue that was causing his seizures. "The first time they approached me, Matt was 10 Years old, and I wouldn't hear of it," says Anne. "I was too scared. I couldn't imagine anyone cutting into my child's brain. Suppose we lost him? Suppose he didn't remember us, or had to start learning all over again? It was too much to even think about." As Matt grew older, the seizures worsened.

"My parents were more worried than I was about the idea of surgery," Matt recalls. "I just had to put up a fight." In 2006, after much consideration, Matt successfully underwent surgery to remove the tissue, and to this day he no longer suffers from seizures. "To us, it is a miracle," she adds. Yet, even after the surgery, Matt's short-term memory will never function completely.

While Matt thrived on the field, in the classroom was another story. "Matt had to work twice as hard in school for grades that others took for granted," says Anne. "School was challenging," recalls Matt. "I would study at night and go to bed saying, 'I know what I'm doing' and then in the morning everything I studied would be gone." Anne and her husband grew concerned that their lively and diligent son would not graduate. "I think that our attention to Matt and his condition made us more dedicated parents and surely a better family than we might have been," says Anne. With hard work, extra summer courses, encouragement and attention from his family and teachers, Matt graduated this past June and currently attends Monroe Community College – his future goal is to become a landscaper.

"When he walked across that stage to pick up his hardearned diploma, though he was a C student, I was very grateful for my C student," says Anne. "As parents, I think we need to stop expecting perfection from our children. Not all were meant to be the valedictorian or the football star. Matt has done the absolute best he can. And to me, he is by far, the most accomplished student of them all."

The Mellors Family

"Having a child with autism has made me a different parent than I would have been," says Lisa Mellors, whose 5-and-a-halfyear-Old son, Benjamin, was diagnosed with autism three years ago. "It made me stronger, and I am determined to help Benjamin succeed."

At the age of 18 months Benjamin was referred to Monroe County Early Intervention because he was not meeting certain milestones. After being evaluated by MCEI team he was approved for speech therapy. After a month, Benjamin's speech therapist sat down with Lisa and her husband Michael and recommend that they take their son to the Kirsch Center for an evaluation.

"I remember the moment clearly when the doctor said, 'Your son has autism,'" recalls Lisa. "I just looked at him and my heart sank to my stomach." The doctors informed Lisa and Michael that Benjamin may never live a normal life, he might not talk, read or write, go to a regular school, or do things that normal kids do. "We were both in shock. They gave us a lot of information and told us to act quickly so we could help Ben."

"I cried and then I took charge," says Lisa. "I have done nothing but research the diagnosis – we have tried everything under the sun to help Ben. The most challenging part of raising a child with autism is the uncertainty – not knowing why your son has it and that there is no cure for it," says Lisa.

Since learning of Benjamin's diagnosis, he was enrolled in services through Catholic Family Services where he received treatment from a speech therapist, occupational therapist, special education teacher and autism specialist. At the age of 3 he attended preschool at BOCES. Lisa and Michael have also kept Benjamin active, enrolling him in social events at the YMCA in the evening to be with peers of his age, learn to swim, play soccer, and karate. "It is hard watching your child have a busier schedule than the adults in the house," Lisa adds.

The hard work and long hours of have paid off.

Benjamin is beating the odds. On Mother's Day 2004, Benjamin spoke his first words and sentence. "I woke up with my son at my side and he said, 'Happy Mother's Day, Mom. I love you,'" Lisa recalls. "I cried and I knew at that time that our son did not give up on us just as we did not give up on him."

Benjamin is now 5 and a half years old and attends 1st grade. He talks, he writes, and is mainstreamed in a regular class. "He does everything that his peers do and he has friends. He has a sense of humor and a great smile. He also loves music, and reads books," boasts Lisa.

Lisa and Michael continue to educate themselves and research Benjamin's diagnosis and she suggests that other parents with children who have special needs do the same. "Take time to be mad, take time to grieve, but don't give up," she says. "Educate yourself, ask for help and keep reading. I will not stop reading until I know my son will be an active role model in today's society – until he walks across that college stage with a degree in whatever he would like to do."

The Stebbins Family

"Ifell in love with Daniel moments after bringing him home," says Chrystal Stebbins of her nearly 3-year-old adopted son, Daniel, who has been diagnosed with ADHD, sensory delays, global delays, and fetal alcohol spectrum disorder. "He has taught me the meaning of love and patience."

"When I was called about adopting Daniel I was informed that he was exposed to drugs and alcohol in-utero," says Chrystal, who took Daniel home when he was only 2 weeks old. "As time went on, he wasn't making his milestones and at about 6 months I saw a social worker who started the process to get him evaluated."

For Chrystal, getting Daniel evaluated early was essential. "Daniel had cognitive delays. This year he has progressed so much that he is now average for cognition."

Currently Daniel attends class every morning and occupational, physical, and speech therapies twice a week. She suggests that if you have an intuition that something is wrong in your child's early months to push, keep asking questions, research, and talk with your physician and child care providers. "Be persistent and don't give up," she adds.

"I knew that Daniel needed someone to stand up for him to make sure he got all that he needed to grow up and be something special, and not slip through the cracks," says Chrystal, who adds that she is passionate about children's rights.

Raising her son has been a learning experience, and has taught her something as well. "I definitely don't judge as much anymore and am more sensitive to the labels we as adults put on kids. Whether it is the skinny boy, or the heavy girl, or the wild kid – I have more patience than I ever knew I could have." Chrystal says her family and friends (including Gordon, her boyfriend of 11 years, and her mother, Cindy) have been a large source of support.

"They let me go through all my emotions – anger, sadness,Hopelessness – without judgment, and then remind me I can do anything I set out to do and that I am strong and loving."

Being a parent of a child with special needs comes with its share of challenges but Chrystal says there are rewards, too. "Yes it is a job, but when you and your child reach milestones that others may take for granted (like playing with a ball) it is the greatest, warmest feeling you could ever know."

The Chase Family

"Having children with special needs has taught me more than I could learn at college, more than I could have learned from a book and even more than if the situation had happened to me," says Leah Chase, mother of 8-year-old Madison and nearly 4-year-old Kaiden, who have both been diagnosed with neurological needs – Madison has been labeled with ADD and Phonological Learning Disabilities (Dyslexia) and is a textbook case for DAMP: Deficits in Attention, Motor Planning and Perception (which is not currently recognized in the US but is commonly recognized in countries like Australia and Switzerland) and Kaiden, who is borderline PDD, which stands for Pervasive Developmental Disorders and includes disorders such as Autism and Asperger's.

For Leah, her children drastically changed her life. "During the first two years of my daughter's life I saw her falling back even when we received services," recalls Leah, whose children both received services through Early Intervention and currently undergo physical, occupational, and speech therapies.

"I was unable to focus at work. So, I left work and focused on her success. My husband supports what I do and he has worked with me to spread our savings enough to buy me the time at home to support my children and what they've needed." During that time, Leah took a part-time position as a Special Education Itinerant Teacher and worked through the Early Intervention and Preschool Programs, where she saw what service coordinators wanted, districts needed, counties sought to serve and what they do with their resources. "I had a better idea of the developmental stages children naturally follow and how services are provided through a number of environments," she adds.

Getting involved is a key step to success, Leah insists.

"Locate advocacy groups, read, talk to people who study, work or know about these diagnoses first hand," she suggests.

When Leah left work to focus on her daughter's development, she joined a group of parents supported through Just Kids and NY State's Department of Health called Parents As Partners where she learned how the Early Intervention System evolved and worked, and how to become a successful advocate, networker, educator and support system. She suggests that when advocating for your child not to stop at the first closed door or first "no" you receive. "Advocacy is not synonymous with anger," she reminds. "It is about moving forward toward having your child succeed using all resources available. Learn how to move around that float in the water to get to the next rung on the advocacy ladder."

Early diagnosis is imperative, Leah says. "Know developmental milestones and when they should occur. And look for second opinions when things don't add up. Have your child evaluated if you have questions about your child's level of development," she says, adding that if nothing else you will be reassured if your child is on track. "No matter what, you will know where he/she stands and have some helpful advice from a professional who works daily with children's needs."

It's a challenge to have children with special needs, Leah admits. "The time and effort each child has to spend on the most basic tasks other people take for granted is difficult," she says. Socially there have been challenges, too.

"The lack of understanding that comes from observers is hard," Leah adds. "A sensory child, like my son, who receives a light touch feels like he is being burned alive and reacts as such. People will avoid him when he acts 'quirky' until I tell them that he has PDD and then the behavior becomes somehow okay." It's hard, she admits. "I need to state it everywhere I go."

Leah's children are not just children with special needs, they are special. "They are both so different in the way they tackle the world," says Leah. "Maddie is the nurturer – wanting to take the world under her wings. She will see a miracle in every speck. Kaiden takes the world by storm and expects all to follow."

For Leah, the time and dedication she has put toward the success of her children has paid off. "Both my kids are in typical settings and I am heading back to work this fall full-time. It is time to take off the training wheels and see how they do without me."