February 22, 2010
Support Group for Parents of Special Needs Children

or call (724) 933-6180 ext. 225.

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Earliest Signs of Autism:
What Every Parent Should Know
By Suzanne Langston M.S.Ed.

Autism is the most common developmental disorder among our youth. Although the causes of autism are unknown at this time, it is known that autism is related to brain function.
It is currently estimated that 1 in 150 individuals are affected by an autistic disorder and that four out of five individuals diagnosed with autism are male. Even though Autism is often diagnosed much later in minorities, it has not been limited by race, ethnic or social groups. The key to improving prognosis for individuals “at risk” for autism continues to be early and consistent intervention.
Some of the most noticeable characteristics of autism include a delay in speech or abnormal language skills, impairment in social interactions such a preferring to play alone or trouble understanding social cues, and stereo-typical or repetitive behaviors. Autism is referred to as a spectrum disorder as it may portray itself very differently in each individual. Because of this, some individuals with autism appear very affected while others have very few notable signs.
Although there are several signs of Autism that can be noted much earlier, it is often not recognized until a child is at least three years of age. It is important for parents to pay attention to their child’s development in order to ensure that their child can get the supports they need as early as possible.
The earlier autism can be identified the better the outcome. If you are concerned that your child is exhibiting symptoms of an autistic disorder, contact your pediatrician for a developmental screening.

Parents of Children With Special Needs…
Common early signs of autism include:
• Not looking at faces by 4 months
• Not smiling or appearing joyful by 6 months
• Not reciprocating smiles or gestures by 9 months
• Not responding to name by 12 months
• Not babbling by 12 months
• No words by 16 months
• No meaningful two-word phrases by 24 months
• Any regression in development or loss of language or social skills
• Failure to look at people or make eye contact
• Atypical sensory behaviors, such as rocking or flapping
• Sensory sensitivities, including intolerance for food textures, overreacting or not
responding to loud noises, sniffing toys
• Does not play with toys, may line up toys or focus on small parts of toys

Suzanne Langston M.S.Ed. is an Individual Family Focused Therapist at Pace School and Partial Hospitalization Program. Pace School is a non-profit day school and partial hospitalization program located in Churchill Borough that provides a unique blend of special education and mental health services to students from seven counties with emotional challenges or autism.
For more information on Pace School, call (412) 244-1900 or visit the website at www.paceschool.org.

Make-A-Wish Foundation® Celebrating 25 Years

For a sick child, sometimes the slightest diversion can go a very long way. The Make-A-Wish Foundation® has been in the business of amazing distractions – fulfilling wonderful, thrilling wishes – for 25 years. It is our hope that every child who qualifies for a wish has the opportunity to be a part of this kind of adventure.
Our biggest challenge is finding children who are eligible for a wish. One of the greatest misconceptions about the Foundation is that a child must be terminal or dying in order to qualify. This is not true, and it keeps families with sick children from coming forward.
The child’s physician makes the determination if a child’s condition medically qualifies them for a wish.
There are no waiting lists, no income limits, no hurdles. Just an incredible experience for a deserving child when he/she needs it the most.
Any child between the ages of 2 1/2 to under 18, who has a life-threatening medical condition, may be referred to our organization. Life-threatening conditions that typically qualify include, but are not limited to – types of cancer, cardiomyopathy and other heart conditions, cystic fibrosis, Duchenne’s muscular dystrophy, and transplants. Children with more chronic or life-altering conditions such as autism, diabetes, mental retardation or a psychological disorder typically WILL NOT qualify unless the condition is coupled with a life-threatening complication.

Referring a child takes only minutes, but the memories of a wish last a lifetime. If you know of a child who may qualify, please:
• Call us (800) 676-WISH.
• E-mail us at email@wishworld.org
• Visit us online at www.wishgreaterpa.org and click on “Refer a Child”
• Write to us at:
Make-A-Wish Foundation
707 Grant Street, 37th Floor
Pittsburgh, PA 15219.

Milestones Achievement Center Supports and Sustains Children with Extraordinary Disabilities

“Few of life’s challenges stretch a mother’s or father’s ability to parent than a child with autism, developmental disabilities, or emotional disabilities. In particular, they may be overwhelmed by a child’s extreme behaviors that tend to set him or her apart from classmates in school and to disrupt classroom activities.
Children in these straits need special help to deal with complex educational and behavioral difficulties. They require assistance that’s best provided in an out-of-school setting for a period of time. They need a school that provides an individualized program that integrates all supports they need to reach a better life and a return to school in their school districts.
Such a program requires diagnosing a child and developing and following a program that enables him or her to modify and manage these behaviors. This is the focus of the Milestones Achievement Center located in Monroeville, Pennsylvania.
The center serves students diagnosed on the autism spectrum and those with developmental and emotional disabilities. “Each child has specific needs and the programs we develop differ from student to student. What might work with one student might not work for another. You have to be flexible and willing to look at all the different alternatives to find out what will work for a specific student,” said Elizabeth Wistuk, Education Director.
“Let’s say that a student needs to work on sitting in his or her seat and to refrain from creating outbursts in class. To reach these behavior-change goals, we work with the student through milestones or steps until we reach them,” said Elizabeth Wistuk, Educational Director.
The first step to such goals lies in an applied behavior analysis. Special education and behavioral health rely on applied behavior analysis as the treatment of choice for serious and complex educational and behavioral challenges. And applied behavior analysis is the underlying approach that integrates every activity at the center, from occupational therapy, speech therapy, and physical therapy to special education, and therapeutic camping.
The analysis is completed by a student’s counselor, a teacher and paraprofessional, and other staff members who work with a student. They formulate a tailored behavioral plan for each individual student, including different treatment methods suited to reach the desired behavioral outcomes.
“This individualized support we provide students works owing to our low, 8-to-2 student to staff ratio. We relate with each student as an individual, including his or her education plan and individual needs,” said Wistuk.
What’s more, communication with parents and guardians is paramount at the center. “If some aspect of a child’s support is lacking at the center, all it takes is a phone call for us to change to something that works better,” said Wistuk.
In any event, the Milestones Achievement Center remains dedicated to including every child within his or her home school provided the inclusion can be accomplished while providing the child with optimal educational and behavioral supports. The planning process for returning every child to his or her home school starts upon enrollment and continues throughout enrollment in the center.

Milestones Achievement Center is located at 715 Bilberry Road, Monroeville, PA. For more information, contact Elizabeth Wistuk, Education Director, at www.ewistuk@salisb.com.

Coping with Grief and Loss
“When you have a child with special needs, grief is going to be an ongoing part of your life. Each parent has to find a coping style. Whether it’s your faith, gathering information or leaning on a support group, you have to find a way to regain that a sense of control.”
Julie Hladio, Family Advisor, Alliance for Infants; parent of a special needs child
“Our grief doesn’t fit in with other kinds of grief; it can’t be addressed by the usual groups, which are for those whose loved ones have died. A new bereavement group for our region will give parents of special needs children a place to talk and be heard, with the compassion they need.”
Kelly Fraasch, founder/director, Parent Resource Network; parent of special needs child
“There is a constant unfolding of grief for many families. It gets re-activated at developmental milestones, when your child isn’t reaching them. I marvel at the courage and love of parents who are in constant pain; give yourselves credit for your dedication.”
Paul Polinko, MSW, Clinical Social Worker, Children’s Hospital of Pittsburgh

Accessing Services
“If you have concerns about your child’s development, ask your pediatrician for a developmental assessment. We often get children later than we should because this is delayed, either because the parent is fearful or the pediatrician has underestimated the parents concern. Early Intervention is absolutely the way to go; children whose problems are addressed early generally do better. You only need a 25% delay in one area of development, such as speech delay, to qualify for services. Having an assessment takes a lot of stress off the parent; if he’s fine, then you’ll know that and if he has a delay, he’ll get Early Intervention. Either way, it enables you to move forward.”
Deborah Uram, MS, CCC, Director of Special Programs, Early Learning Institute
“I recommend that parents keep a journal of their child’s medical history. Keep all your information in it: diagnoses, doctor’s appointments, surgeries and medications the child is taking. Parents often have to take the child to many specialists and it’s helpful to have that information organized and in one place. It makes accurate information available to everyone involved in the child’s care, and that means better care.”
Kim Reblock, RN, BSN, Hospital Director, Transitional Infant Care,
The Children’s Home of Pittsburgh
“Sometimes a diagnosis is slow in coming, but having one makes a huge difference because it gives you an avenue for action. Once you know what you’re dealing with, you can find services, books and online information, or join a support group and find other parents. Not knowing what is wrong, versus knowing and being able to go forward from there, is like night and day. Not knowing what’s wrong is far more frightening.”
Julie Hladio, Family Advisor, Alliance for Infants, parent of special needs child

Self Care and Stress Management
“It’s easy to be consumed with the needs of your child. Nurture other parts of your life whenever possible. Call a sitter and go on a date with your spouse; spend one-on-one time with your other children. My older son was thrilled when I spent an entire day with him, riding the subway to the end of the line – his request. He rarely has me all to himself and we had a wonderful time. Taking time for yourself restores you.”
Tina Calabro, writer who specializes
in disability issues; parent
of special needs child

“Let others help care for your child. This is hard, because you’ll be fearful of errors. You have to trust others and accept that no one will do it as well as you. But if they are “good enough” then let them help so that you can step back and get a break. You can’t continue to do a good job if you’ve been up all night, every night, and are chronically exhausted.”
Jennifer Benger, Psy.D., Director of Psychology, Children’s Institute;
parent of special needs child
“Be really nice to yourself. Don’t feel bad for wanting a break; it’s healthy. If you find that the usual support systems, like grandparents, can’t help, then you and your spouse can at least give each other a night off. Get involved with a service organization in order to meet other families, and then you can relieve each other now and then.”
Paul Polinko, MSW, Clinical Social Worker, Children’s Hospital of Pittsburgh


Resources for Parents of Children with Special Needs

Alliance for Infants and Toddlers
www.AFIT.org • (412) 885-6000

The Children’s Therapy Center
(724) 942-6126

The Children’s Home of Pittsburgh
and Lemieux Family Center
www.childrenshomepgh.org
(412) 441-4884

The Children’s Institute
www.amazingkids.org
(412) 420-2202

The Early Learning Institute
www.earlylearninginstitute.org
(412) 922-8322

Parent Resource Network
www.parentresourcenetwork.org
1-800-NICU-PRN

Therapeutic Specialists, Inc
www.tsiot.com • (412) 833-6663

Western Pennsylvania
School for the Deaf
412-371-7000 •  www.wpsd.org

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For more articles, download the Winter '10 issue (PDF)