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

Part Two of a Two Part Series

Experienced professionals and parents from Western Pennsylvania have graciously shared with the Guide to Good Health their best advice and wisdom for parents of special needs children.

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

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 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

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

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

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

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

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

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