children with special needs | Annie Fox's Blog

Kids with special needs need pushy parents

November 17, 2012

I originally wrote this article for TakePart.com where I write a weekly education post. Check out the rest of my articles there.

Fighting for our kids

All living things, with the exception of clones and genetically modified food, are unique. Of course, that includes children. Every kid has a collection of traits, quirks, interests, annoying habits, talents, and abilities that makes him or her truly special. That’s why education should be special for every child. But unfortunately, it’s not.

Many schools could do a better job fostering creativity and problem-solving skills that 21st-century students will need to solve 21st-century challenges. The same can be said for the low priority most school place on character education. So, on many levels, students in the “mainstream” are not getting a lot of what they need to succeed. It’s also true that millions of kids with special needs are being grossly underserved, despite federal law mandating that these children receive truly special education in public schools.

While I am a seasoned educator and a parent, I have no direct experience with the challenges of raising a child with special needs, nor the complexities of navigating an education system to best meet those needs. But here’s what I do know from talking with parents who have lots of experience in this realm: Crippling state budget cuts aside, one major obstacle to providing effective special education may be educators who pre-judge a child’s ultimate learning potential and then design programs based on what the student can’t do rather than acknowledging what s/he may not be able to do yet.

More: Special Education in the U.S. Has a Long Way to Go—Here’s What Schools Can Do About It

As school psychologist Jan Baumel, M.S., states in her excellent article,Understanding Special Education Laws and Rights, “The courts have said that a child must receive ‘some benefit’ from his education, but schoolsdon’t have to maximize your child’s potential. (That’s what’s meant when you hear that the schools have to provide ‘a Chevrolet not a Cadillac’ education.)”

But why not push for maximizing potential? Every child deserves that! No one can ever predict exactly where anyone else’s path may lead. For that reason, education must help all children construct a path toward their own unlimited future. Because that doesn’t happen in every school, all kids need parent advocates. Kids with special needs may need especially loud and pushy parents to go to bat for them.

Here are some tips to help you advocate most effectively for your child:

Know your rights. Educate yourself about what your state law guarantee in terms of special education. Each state’s Department of Education also has its own division for Special Education and Support. Search the Internet for “Special Education (your state)” to find the programs and services to which your child is entitled.

Connect with other parents. It doesn’t matter that one child’s special needs are significantly different from another’s. What counts is the simple fact that parents working together, supporting each other, brainstorming questions in advance of district meetings, sharing information after such meetings, are more powerful and effective advocates for the rights of children.

Communicate with your school. To understand and navigate school district policy on behalf of their children, parents need to keep the lines of communication open with teachers and other school support staff. It is helpful to take the point of view that you and the professionals who work with your child are on the same team. Your appreciation for the job teachers do helps build trust, and it can ease the way to get the services your child deserves.

Bottom line. The challenges of advocating for a child with special needs can be stressful for families. The challenges of providing excellent special education can be stressful for educators as well. Parents and schools need to work together to understand the diverse educational requirements of every child with special needs and how best those requirements can be addressed and fulfilled. It often takes tremendous patience and persistence. And yes, pushiness helps!

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Guest Blogger: Quirky kids – When to worry

March 12, 2011

by Susan N. Schriber Orloff, OTR/L

Susan Schriber Orloff is CEO and executive director of Children’s Special Services, LLC, an Atlanta-based occupational therapy service for children with developmental and learning delays. Her book, Learning Re-enabled, is a practical guide for parents, teachers and therapists.

Different isn't necessarily a problem

Five-year old Johnny’s a mess. His teachers float between anger and frustration about him. He has few friends and those he makes he cannot keep. His parents walk around on eggshells never knowing how he’ll react. He insists on wearing the same clothes. He talks about not liking himself and how he hates “everyone.”

In school he can be great, but if the fire alarm goes off, he’s a unable to “reset” himself and stays “on guard” and anxious. He doesn’t like to stand in line, because other kids “hit him.” Lunchroom smells “make him sick.” On the playground he’s a “wild-man” running and bumping into people and barely noticing.

Six-year old Brent is academically bright, though very forgetful. Turning in homework is a problem. The kids at school are friendly to Brent, but he rarely gets invited for play dates. During recess he seems to be a loner or randomly hangs with the same 1-2 classmates. While he is not the “star” athlete, he’s not the worst either, though he’s at the lower end of physical performances.

At home Brent is interactive and plays well with his 8 year old brother Max and Max’s friends. He insists on wearing long sleeves even in the summer and will not go in the water without a full body suit or at minimum a long sleeve t-shirt. Although congenial and generally obedient, Brent always seems to be in a “fog” needing guidance and redirection.

Brent and Johnny are displaying developmental “red flags.” Both have sensory processing issues but at opposite extremes. Breaking observed behaviors into auditory, visual, tactile, movement, body awareness (muscle/bone/joint), olfactory/taste, and emotional categories it is easy to see the patterns of a skewed sensory processing impacting all of the above areas.

Johnny needs sensory “calming” while Brent needs sensory stimulation. Johnny needs to learn how to slow it down and Brent needs to learn how to be more fluid. Johnny needs to learn how to be more discriminating and make better activity and behavioral choices. Brent needs to learn to be more assertive and to try new things. Clearly they both need help developing skill sets more in line with their life demands.

When to seek outside help and when to not? There are many online developmental checklists. I caution you to use them sparingly and in conjunction with input from an occupational therapist or other related professional. One concern does not make an “issue.”

Here are some questions you can ask as a guide to whether you should look deeper. Does my child_____________

Seem to need more “protection” than other children
Fidget excessively or appear “on the go” most of the time
Seem to be unusually forgetful
Struggle at school
Refuse certain foods
Reject certain textures in clothing and/or habituate wearing the same clothes
Appear intimidated by learning new motor skills
Resist combing his hair/getting it cut
Seem to have “weak” muscles; tire easily
Have a difficult time calming down when upset
Have difficulty accepting criticisms
Experience social issues as a top school concern
Resist going to school
Act depressed* (*angry, does (s)he “show off”, act bossy, have hypochondria to name a few)

If your “quirky” kid has a reasonable number of friends, gets good grades, is generally an easy member of the family, has age-appropriate interests, is able to transition and go with flow, etc., no worries. Just accept and love his quirks.

If, however, any of the above concern you, I suggest you consult a developmental pediatrician rather than a general pediatrician. The developmental pediatrician looks at neurological, emotional, physical and motor/cognitive development. S(he) can discern if there are ambiguities that need to be addressed. Developmental pediatricians are one-stop shopping in the discovery process of how and why your child is performing the way he/she is.

Do not wait for your child to “grow out of it” or to “mature.” Specific issues evolve but they do not go away and research clearly supports the benefits of early intervention.

Filed under: Parenting — Tags: children with special needs, CHildren's Special Services, developmental pediatrician, developmental red flags, Learning re-Enabled, quirky kids, Sensory Processing Disorder, SPD, Susan Schriber Orloff — Annie @ 5:52 pm

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