by Shelley Tzorfas

Question: I have always planned on homeschooling my children, and it was working out nicely with my seven year old.  

But my younger child is very disruptive, frequently screaming, crying, and can't sit still.  

So I've taken him to doctors and eventually to a psychologist for second opinions.  Now I'm even more confused:  one doctor said it's PDD-NOS (Pervasive Disability Disorder-Not Otherwise Specified), another's diagnosis is autism, the next said it was Aspergers Syndrome (high-functioning autism) and yet another says its ADHD/ODD (Attention Deficit Hyperactivity Disorder/Oppositional Defiance Disorder).

Can you help me make sense of this?

Shelley's answer: First let me say I'm sorry it is so complicated. Over the past decade and a half the diagnosis of PDD-NOS has been given across the board to countless children.  

This is a catch-all phrase that covers a wide range of illnesses.  It is an umbrella heading for ASD,meaning Autistic Spectrum Disorder that includes autism, and Aspergers Syndrome among other conditions.

The labyrinth of confusion begins when one takes a child like your younger one to a pyschologist or psychiatrist in Town A, and the diagnosis is PDD-NOS.  Take the same child that same day to Town B,and you might be told that s/he has Aspergers Syndrome.  And that's only part of it.  

For example, even high functioning autism opens the door to an array of differing opinions: what one doctor describes as high-functioning, others do not.  

Now take the same child, same symptoms, to Town C and you might be told that s/he has ADHD/ODD. Attention Deficit Hyperactivity Disorder, combined with Oppositional Defiance Disorder.

If that is not confusing enough, within the next few years an estimated ten new diagnoses are anticipated.  So eventually about every letter in the alphabet will be used!

Let's look at some practical solutions for your child regardless of the diagnosis:  

1. If your child is not verbal, begin speech therapy IMMEDIATELY.  This does not have to necessarily be ABA (Applied Behavioral Analysis) because there are many other effective methods out there.   

2. If she/he falls a lot or is clumsy, begin physical therapy IMMEDIATELY.  

3. If she/he cannot draw or paint, begin occupational and/or art therapy IMMEDIATELY.

4. Another avenue is Sensory Integration Therapy.

Try to get these services through your insurance, local school district, university, hospital or private therapy.  Barter services if you have to i.e. hair-cutting, house-cleaning, healthy meals on wheels, piano lessons, etc. Do whatever it takes!

Time is of the essence, as I expressed in my August '08 article.  This because a window of opportunity exists   -- approximately between the ages of birth and five -- when the brain is flexible, and can regenerate, opening new, fertile pathways to cognitive and social skills.  

So the good news is by starting early, you buy more time for your child with each intervention.  And this window of opportunity can be extended even to the age of eight or nine!

As a parent you should accept your limitations and forgive yourself for having them.  For example you may come to the conclusion that you will not able to homeschool your special needs child, and hire a special needs tutor.  You need a break and let the preschool in your district provide services.  Also, yourself and the rest of the family will need respite care and downtime.

But fortunately the sooner these services are in place, the better the child will get regardless of Alphabet City diagnoses.  

I have seen many young people with these disorders go on to live healthy independent lives.  On the other hand I know children who have ended up in group homes or worse due to a lack of services, denial, and a lack of community support.

One success story is author Temple Grandin, who was diagnosed as autistic years ago.  After obtaining her Ph.D. in the sciences, Grandin has designed small pens and round ramps that has changed the quality of life for millions of cattle around the world.  

Her family was relentless in getting her help after she was expelled from several schools and medical institutions.  I highly recommend her books, and taped lectures in which she vividly describes the reasons for her childhood fits.  These works bring logic to the issues these kids face.

All children with one or all of these diagnoses share certain traits: their sense of smell, sight, touch, hearing is acutely heightened.  If you find your child grabbing blankets and hiding under the table, building forts, or hiding in the closet, she/he is giving vital information.  This is how you can learn what is needed to essentially cure your child.

These activities are actually forms of self-medicating.  The fort reduces the light that might be overloading the child's system. The sound of the television may be like an explosion, therefore the fort, or closet muffles the noise.

If you put him in a sports program, imagine how the combined effects of the bouncing basketball, the view and  echoing roar of the crowd, and florescent lights might seem to him:  like "bombs bursting in air".

When you see her pulling off her shirt, the fabric is itchy to her, the tag digging into the skin. It's like sandpaper to her skin.

He may need to wear the same colors every day and that is fine for now. Also, perfumes, soaps, cleansers, irritate him beyond imagination.  

Certain textures in foods or colors can entirely disrupt her system.  Any food dye with a number (i.e. red #5, blue #1, etc.) in such snacks as grape soda and cherry-flavored candy are made of tar and petroleum, which damage the functioning of the child.

These poisons are used because they are cheaper than fresh fruits.

He may have food sensitivities to milk, soy proteins, wheat, gluten, etc. Sometimes even vitamins are not properly digested. Many of these children have skin problems like rashes and excema.  

Keep in mind that often it can be the gut interfering with the brain, rather than the brain interfering with the child.

All in all, autism is not one single illness, but a battery of multiple illnesses.  The truth is that regardless of the diagnosis, as a parent you should do your best to deal with a WHOLE child, from soup to nuts. From their head to their toes.

Without question you have been dealt a hand that is very difficult. But I believe that a parent who wrote a question like yours has what it takes to solve the puzzle.

SUGGESTED READING: MOTHER WARRIORS, by Jenny McCarthy.  McCarthy is girlfriend of Jim Carey.
SUGGESTED DVD: NORMAL PEOPLE SCARE ME,  produced by Joey Travolta  (John's brother). Keri Bowers, author.

SHELLEY TZORFAS is the Founder of Specialized Tutoring/Learning Assessments, and has been tutoring students with ADD, ADHD, Dyslexia as well as undiagnosed kids for nearly twenty-five years.
Shelley views Dyslexia as a "processing of information problem, either in the visual, auditory or kinesthetic mode," and strives to educate the general public about learning disabilities.Like other dyslexics, Shelley has had varied, successful careers. These range from appearing on a PBS documentary, and exhibiting artwork in museums. She is currently writing a book on learning differences.
Shelley, nee Gelfman, is a single mother of two boys and lives in New Jersey. She is available for consultation and/or tutoring, and may be reached at her website at www.betterschoolresults.com .Her email is stzorfas@gmail.com , phone number is (908) 735-9053.