What are special needs? Parenting one’s child to adult life

For many parents, news that their child has “special needs” is delivered at the public school parent teacher conference, a place where the atmosphere is a lot like that of Rick’s Cafe in the movie Casablanca. Crowded. Noisy. Anxious.

That’s where it happened to me.  And I was gob-smacked. I went there hoping to come home with an age-appropriate reading list and came home disoriented as ever I had been stumbling out of after-hours bars in my salad days in Manhattan.

So let’s glance at the term. Webster describes it thus: “The educational requirements of pupils or students suffering from any of a wide range of physical disabilities, medical conditions, intellectual difficulties, or emotional problems, including deafness, blindness, dyslexia, learning difficulties, and behavioral problems.” Notice the prominent position of the phrase ‘wide range’ within the definition. Notice how the definition does go on and on.

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Wow. Wiped out by this tsunami of bad news, the stunned parent has nothing but questions fueled by fear. Who has the answers?

Some needs are recognized, understood and supported. The zeitgeist confers methods to help the blind and the deaf. Those methods should and usually are offered very early in the child’s life. Non-English-speaking children also have access to teachers of English as a Second Language. Children in wheelchairs are guaranteed access into and within public buildings.

But not all needs have been normalized.

Lucky the family in a school district with an informed and intelligent director of special education. That person will be a comfort and a resource. I’m not sure how many of those are out there working. If one does not have access to such a person, those first days are a confusing  time, coupled with the complication that time is of the essence. The child has needs.

That fact is stated right in the “label.” Unmet, those needs become more and more of a concern, and spawn more and more problems. And so far, all one has is a label. A clear diagnosis may be down the road quite a bit, and you are in the middle of the hurly-burly of raising a family.

In the best of all possible worlds, the child in question may not be able to read, or sit still, but among his peers is recognized for a skill more important in that milieu. Like throwing a ball in a hoop, or drawing cats. That happens in the world called childhood, and protecting its importance preempts all other scores on all other spread sheets.

 

We should have seen this coming. The baby begins life with an Apgar score. What is a valuable tool for assessing health quickly becomes the subject of one more loaded question from the other new mom/dads one meets in the pediatrician’s waiting room. It’s easy to dismiss that as folly. It’s quite another to shake off the adjudications of higher powers.

Parents of children with complex disabilities must cope with matters best described as monumental. There is a very high rate of divorce.

How do you find a babysitter for date night when your child has a seizure disorder? There are complications around sibling dynamics. The parent must facilitate all social interactions, which is exhausting and physically demanding.

And then there are the physical demands of dealing with a child, now 19, who cannot toilet himself, or bathe or shower. The house must be renovated to provide all facilities for that child on the first floor. Of course, we have compassion for that child, but what about those hero parents? Can their efforts and sacrifices every be honored enough?

That’s the rub. The child matters most, but parents matter also.

What if you have children like mine? Mine were curious, active, happy. But the oldest was in third grade, and could not read. (That skill was not mastered until seventh grade.) But I was given platitudes, hollow reassurance, and vaguely worded documents chiding me to sign off on testing them. If your child has been identified and the information you have been provided does nothing but prompt more questions, take heart.

In New York State, accommodations for our children are spelled out clearly in “Special Education in New York State for Children Ages 3-21 – A Parent’s Guide”: “Parents of preschool children will be asked to select an approved evaluator from a list of evaluation sites. If you have concerns about providing consent, you can talk to the Committee chairperson. If you do not provide consent for your preschool child (ages 3-5) to be evaluated, the Committee on Preschool Special Education will take steps to make sure that you have received and understand the request for consent for evaluation of your child but the district may not go forward without your consent. If you have a school-age child, the school district is responsible for providing the evaluation.

“As a parent, you have input as to the tests and assessments to be conducted on your child. Before an evaluation is conducted, you will be asked for your suggestions about evaluating your child and be given information about the kinds of tests that will be used. If you have questions about the purpose or type of evaluation proposed, you should discuss them with the chairperson of the Committee.

“If you feel that an evaluation conducted by the Committee is not appropriate or if you disagree with the results, you can obtain, and request that the school district pay for, an independent educational evaluation (IEE).”

 

That’s the very first step I took, but I was still confused, and sadly, my children were not getting the help they needed. Stress all around. I was fortunate to have the counsel of Dr. Frank Doberman at Karner Psychological Associates in Guilderland, New York (now there are two more facilities, one in Clifton Park and another in Castleton-On-Hudson.) My children are grown now, but I spoke with him for this article.

His advice is simple. Persevere until you find out exactly what your child needs.

This area of knowledge is very new. Well-meaning but unskilled people can make for mistaken diagnoses. Happily, assessment is now aided by actual hard science. We understand that dyslexics, children like mine, have an actual neurological difference that can be determined by an MRI on the brain.  Don’t worry. You don’t have to go to that length. A good evaluator like Dr. Doberman can see who your child is based on tests the child takes himself.

Even when you find out exactly what you are dealing with, the experience can be very distancing. Most kids are “typical” and so, therefore, are their parents. You are not. You are special now, too. But take heart. This distancing cuts across all special lines.

I was at dinner one night with a large group of women, artists all, in various mediums. One woman made remarks that seemed to her innocent, but which were cruel. I saw the expression change on the face of another woman across the table.

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I calmly opened up the conversation to an aspect of my children’s lives. This provided good cover. The stricken woman relaxed, and told this story about her son. He has definite cognitive challenges. He is well behaved, but mildly rowdy (my kind of kid).

On line in the cafeteria, he heard one of the lunchroom ladies call out for “Mr. Howell?!  Mr. Howell?”  So that woman’s son did just that. He howled uproariously. And even though he was soundly disciplined, which his mother superficially and dutifully supported at the subsequent parent-principal meeting, she was thrilled at that associative leap her son had made. She and I became fast friends.

Balance is key. We do not want to make all of life about the difference, nor do we want to ignore the difference. Some children will go on, in adolescence, to find an identity within the culture of their difference. This is true for the deaf and blind and gay and transgender children, we hope. Once again, the parent will have new lessons to learn. These are the lessons from that culture.

Children who do not have that advantage, like those with ADHD, or dyslexia, must learn to maintain their self-acceptance within the mainstream which does not always accept differences. Nonetheless, one hopes that they become very comfortable.

My son went to a Catholic school for part of his middle-school education. Mass was held every Friday morning. We are not Roman Catholic, so during the celebration of the Eucharist he remained in the pew.  An elderly curmudgeon scampered over to him that first Friday and hissed in his ear, “What’s the matter?  Aren’t you a good Catholic?” “No,” he whispered back, “I’m dyslexic. And a hostage.”

You understand my pride.

A lovely woman I know recommended the book Far From the Tree by Andrew Solomon. It is beautifully written, and seamlessly compelling.  If you are a “special parent,” or simply want to understand what it takes to be special, reading this book is a good place to start. You may find yourself becoming pretty special, too.