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Special Needs Defined

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Thoughts of a Mom

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Our New Host!

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Key Words

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Special Needs Defined

Posted by AngelaW (Moderator) at Oct 29 2007, 07:29 PM. 0 comments

What are special needs?

What Are "Special Needs"?
From Terri Mauro

One Term, Many Definitions: "Special Needs" is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound mental retardation; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.

Minuses and Pluses: "Special needs" are commonly defined by what a child can't do -- by milestones unmet, foods banned, activities avoided, experiences denied. These minuses hit families hard, and may make "special needs" seem like a tragic designation. Some parents will always mourn their child's lost potential, and many conditions become more troubling with time. Other families may find that their child's challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.

Different Concerns: Pick any two families of children with special needs, and they may seem to have little in common. A family dealing with developmental delays will have different concerns than one dealing with chronic illness, which will have different concerns than one dealing with mental illness or learning problems or behavioral challenges. This Parenting Special Needs site devotes sections to the following specific issues: medical, behavioral, developmental, learning, and mental health.

Medical Issues: Medical issues for children include serious conditions like cancer and heart defects, muscular dystrophy and cystic fibrosis; chronic conditions like asthma and diabetes; congenital conditions like cerebral palsy and dwarfism; and health threats like food allergies and obesity. Children with medical issues may require numerous tests, long hospital stays, expensive equipment, and accommodations for disabilities. Their families have to deal with frequent crises, uncertainty, and worry.

Behavior Issues:
Children with behavior issues don't respond to traditional discipline. With diagnoses like ADHD, Fetal Alcohol Spectrum Disorder, Dysfunction of Sensory Integration, and Tourette Syndrome, they require specialized strategies that are tailored to their specific abilities and disabilities. If those strategies are not developed and used, kids with behavior issues throw their families into chaos and are seriously at risk for school problems. Their parents need to be flexible and creative.

Developmental Issues: Developmental disabilities are some of the most devestating for a family to deal with, changing visions of the future and providing immediate difficulties in caring for and educating a child. Diagnoses like autism, Down syndrome and mental retardation often cause children to be removed from the mainstream, and parents must be fierce advocates to make sure their children receive the services, therapy, schooling, and inclusion they need and deserve.

Learning Issues: Children with learning disabilities like dyslexia and Central Auditory Processing Disorder struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and avoid self-esteem problems and behavioral difficulties. Parents of learning-challenged kids need to be persistent both in working with their reluctant learners and with the schools that must provide the help these children need.

Mental Health Issues: A child's problems with anxiety or depression can sneak up on parents; problems with attachment may smack them right in the face. Living with a child with mental health issues can put family members on a roller coaster of mood swings and crises and defiance. Parents have to find the right professionals to help, and make hard decisions about therapy, medications, and hospitalization. The consequences of missed clues and wrong guesses can be significant.

Common Concerns: Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be.

Thoughts of a Mom

Posted by Kris (Moderator) at Feb 3 2007, 04:13 AM. One comment

Thoughts of a Mom
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.

You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with heir diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Our New Host!

Posted by AngelaW (Moderator) at Feb 2 2007, 08:59 AM. 0 comments

Welcome to the new specialparent.org!!!!

We have recently moved to a new host. You will have to register again if you registered prior to 2/1/07.

Please contact us with any questions.

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Key Words

Posted by akadmin (Admin) at Feb 1 2007, 09:19 AM. 0 comments

We have added the following "key words" to help search engines find us.

cerebral palsy, CP, children with disabilities, autism, brain injury, Apraxia, vision impairment, seizure disorder, special needs, epilepsy, cortical vision impairment, vision impairment, pvl, brain bleed, hydrocephalus, vp shunt, feeding tube, nasal g-peg, developmental delay, mental retardation, hemiplegia, diplegia, quad, quadriplegia, spasticity, hypertonia, hypotonia, low tone, high tone, dystonia, atheiod, Botox, Baclofen, Baclofen pump, downs, down syndrome, IUGR, failure to thrive, FTT, Dyspraxia, sensory motor issues, deaf, deafness, hearing loss, early intervtion, physical therapy, occupational therapy, vision therapy, speech therapy, neurological disorders, special education, brain stroke, IEP, ISFP, spina bifida, Ataxia, triplegia, oral aversion, microcephaly, prematurity, cleft palate, cognitive impairment, Epilepsy, Seizure Disorder, Equipment for Special Needs, ataxic CP, Dynamic tone, IVH, support group, dysphagia, parents of children with special needs, parents of children with disabilities, disabled child, Dysarthria, children with special needs, dyspraxia, dyslexia, choreoathetosis, mitochondrial disorder, neuromuscular disorder, athetoid cerebral palsy, sensory integration dysfunction, caring for disabled child, special needs children, g-tube, pediatric disability, pediatric special needs, special needs resources, neurological disorders in children, kids with special needs, ADHD, depression in children, bipolar in children, DAFO, AFO, blindness, hypoxic ischemic encephalopathy, Angelman Syndrome, Arnold Chiari Malformation, Asperger's Syndrome, Central Auditory Processing Disorder, CAPD, Lordosis, Dandy-Walker Syndrome, movement disorders


Posted by akadmin (Admin) at Feb 1 2007, 09:18 AM. 0 comments

Hello! We are so glad that you have found our support board for Parents and Caregivers of Children With Special Needs and Disabilities. We recognize how important it is for us to come together, that is why we have created this forum. We are here to give and receive support, celebrate the good times, and lean on each other through the hard times.

Please take a moment to register to have full access to our board. Registration is free, of course.

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