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Good Advice for Parents of Children with Special Needs
By Nancy Kennedy

Every child is special and unique, with individual needs that parents strive to understand and meet. But when one has a child with a chronic medical condition, developmental delay, learning disability or autism, there are greater demands and unexpected challenges. Meeting those challenges means finding personal and community resources that enable parents to cope, adjust, thrive and meet the myriad needs of their child and family.
Experienced professionals and parents from throughout the Westmoreland County region have graciously shared with the Guide to Good Health their best advice and wisdom for parents of special needs children. Whether you're a new parent reeling from the emotional impact of a crisis birth, the parent of a toddler with a new diagnosis, or the parent of an older child facing yet another transition, there are numerous resources, supports and services available to help you, your child and your family.

Become your child's advocate
"Your child may receive services from many professionals, but they will come and go, while you are the one constant in your child's life. Parents often tell me that they need an advocate, but what they really need is to become their own advocate. Part of what we do at PEAL is empower parents to act as advocates and communicate assertively with professionals, because no one knows your child like you do. Professionals have a lot of knowledge, but parents do too – plus, parents have vision for the child."

- Cindy Duch, Director of Parent Advising, PEAL Center

Set boundaries with your professional team
"When you have services involved in your life, it is important for both the provider and client to set boundaries during the initiation of services. For this to take place, open lines of communication are essential. This is extremely important. Going forward both parties know what to expect from each other and what is acceptable or not."

- Shacoya Bates, SWAN Permanency Caseworker/Caregiver Family Support Coordinator, Every Child

Resolving conflicts with professionals
As a teacher myself, I often come across conflict with parents regarding their children.  It is important for both sides to keep some things in mind.  From a teacher's point of view, most teachers are using evidenced based programming and are attempting to mold the student into the best version of themselves, though sometimes it may appear that they are being extra hard.  Teachers are trained to see a childs' potential and push it as far as they can.  However, from a parental perspective, there is a lot more emotion involved. There might be issues within the home or things that have been tried in the past that weren't successful. 
There can be a battle between maintaining privacy and disclosing necessary information, but I believe open communication solves all conflict.  Once a parent understands that the professional is doing everything in their power to help their individual be successful it often helps break down those walls.  In the same respect, once a professional understands that the parents are going to be equal partners regarding their children, it can work wonders.

- Melissa Fligger, president, Autism Society of America, Westmoreland County Chapter

Focus on your child's strengths
"A practical step is to assemble a "snapshot" of your child – a collection of information that includes history, interests, likes and dislikes and strategies that work for your child, plus a photograph. Always list your child's strengths – it's easy to focus on what's wrong, and forget the strengths. And always, get everything in writing – that is a hallmark of advocacy."

- Cindy Duch, Director of Parent Advising, PEAL Center

Develop a personal peer support system
"My best advice is to develop a good support system. When you are going through things, you can feel very alone, but when you have a peer who understands and supports you, it resets that. You may not be comfortable talking with professionals about all the things you are feeling, but a personal support system gives you a safe outlet, enabling you to rant, to laugh, and to talk about anything. I also recommend having a professional support system – a group that includes your medical team and your school team. You need professional advocates as well."

- Debbie Leggens, Disability Advocate, Achieva/The ARC of Westmoreland County

Keep pushing forward
"Developing coping skills can be a daunting task. It takes practice and patience and it's important to remember that setbacks might occur, but it is most important to not get down on yourself and keep pushing forward! When trying to find resources and services that can help, I start with places like United Way, Community Centers, and schools. Most have a running list of organizations in your area that can assist you. Be prepared with questions to make sure you are choosing the program that is best for your family. Google is also a good source, but you have to be specific.

- Shacoya Bates, SWAN Permanency Caseworker/ Caregiver Family Support Program Coordinator

Learn to ask for help
"One of the hardest but most important things is to be able to reach out and ask for help. Once you get past that first step, it will get easier. Reach out to a friend, a therapist or a counselor. Needing help is not a sign of weakness; asking for help is a sign of strength.

- Sue Klaus, ACHIEVA/The Arc of Westmoreland County, parent advocate, mother of Nick, age 22

Learn to accept help
"Learn to accept help. You cannot do everything by yourself, and it's good for your child to have other people in his life. Find caregivers who do this work because they love it and want to make the child's life better. Be open to trying different things; the reward of that is growth."

- Ruth Ann Bartos, ten-year caregiver to Nick, age 22

Siblings
Siblings often feel left out because their other siblings require a lot of extra time and attention due to therapies and appointments and concerning behaviors. It's important that parents try to give siblings their own "special time." Parents need to create a safe place where all the siblings feel they're able to communicate their feelings.  Sibling support groups are very successful in helping them deal with and their own often confused feelings.

- Melissa Fligger, president, ASA-WCC

Plan for the future
"Plan for your child's future. It's so easy to get caught up in the present, but you must keep your eyes open and have goals for the future, plus a plan to get there. Make plans so that you will have peace of mind, knowing that you set things up for when your child is out of the school system, when it is much harder to get what you need."

- Sue Klaus, ACHIEVA/ The Arc of Westmoreland County, parent advocate, mother of Nick, age 22

Focus on the positive
" I read a touching story from a mother who have given birth to a child with Down's Syndrome. Shortly after the child was born, she was approached by friends and relatives expressing their sympathy over the fact that her child was born with a genetic disorder.  However, she had one visitor who took one look at the child and exclaimed, "my what beautiful eyes!".  The mother was moved beyond words that someone had focused on a positive trait of her baby.  
We as parents, professionals, friends and family members need to always focus on the positives and strengths of each individual."

- Rebecca Faulk, Agency Director, Ligonier Valley Learning Center, Inc.

Celebrate All Achievements
As a parent of a child with special needs, it is easy to get caught up in the long list of things he/she may never do independently. Instead, celebrate the inch-mark accomplishments. Children with special needs must work so much harder than their "typical" peers or siblings for their achievements.  When writing goals, ask that your educational team capture good baseline information and write goals that are achievable in smaller increments.  You and your child's professional team will see marked and continual progress. Most importantly, your child will feel a sense of pride in their accomplishments.

- Beth Ramella, mom to Travis (9) and Outreach Director/CVI Project Leader at Western Pennsylvania School for Blind Children

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