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BERMUDA | RSS PODCAST

The Crow family

identical twins Richard and Michael Jr, who are four. All three are autistic, but each child is at a different functioning level.

Mrs. Crow noticed at age 14 months that Geoffrey began to withdraw. He preferred to play alone in a corner. He would also scream, suddenly and for no apparent reason, for 15 to 20 minutes at a time. Nothing would stop him, and very often one screaming session would be quickly followed by another. What set him off was always a mystery.

Then there was the compulsive lining up and stacking of things. If just one thing fell, he would knock the rest down and start all over again. Everything had to be perfectly lined up or stacked at the first attempt.

He lost what language skills he had acquired, and instead began "jargoning'' -- babbling in sounds that only he understood.

Geoffrey also developed a complete fascination for the cartoon character Barney and seemed to have no imagination of his own. Instead he absorbed things from any video or commercial he watched.

"Basically, I was told by doctors, speech therapists and others that he would talk when he was ready and got frustrated enough,'' Mrs. Crow relates.

"Nobody would believe us when we said something wrong. It was always: `He's bright, he'll be all right'.'' In June, 1998, the family moved from Canada to Bermuda, and in September Geoffrey was enrolled in pre-school. A month later the head teacher told Mrs.

Crow her son didn't seem to be having any fun, wouldn't join in with the other children and frankly the staff didn't know what to do with him. She recommended that he be evaluated by the Child Development Programme.

There they found that while, in some respects, Geoffrey was functioning below his age, in others he was way ahead, so work with a speech therapist began.

Meanwhile, the twins were approaching two with no language skills at all, so in April, 1999, they were referred to speech and language pathologist Yvonne West. After hearing the family history, she asked to see Geoffrey as well, and promptly recommended that he go abroad for testing.

So in August, 1999, Mrs. Crow took her oldest son to the Toronto Hospital for Sick Children where he was diagnosed as "high functioning autistic''.

"It was a relief to finally have someone tell us that Geoffrey was different,'' Mrs. Crow remembers, "and then I thought, `Oh my, we are dealing with autism. I must find out everything I can about it and get him everything he needs.' It was always clear that he was very bright, but he couldn't communicate with people.'' With the diagnosis, however, came a set of recommendations one of which was impossible to meet in Bermuda.

"They said he needed a minimum of 20 hours a week each of intensive speech, behaviour and socialisation therapy, but in Bermuda we could only get 90 minutes a week for everything unless we went private -- and even then, you could only get maybe one hour a week, so Geoffrey was getting well below what he needed,'' Mrs. Crow explains.

Meanwhile, at two and a half, the twins were showing the exact same signs of autism Geoffrey had, except they were functioning at a lower level. Having become familiar with the problem through their oldest son, the Crows felt they didn't need to get an official diagnosis -- until their insurance company pointed out that, until they did, it couldn't assist them.

Thus it was that in July last year, Richard was diagnosed with moderate autism at the milder end of the scale while Michael Jr was deemed moderately autistic at the severe end of the scale, meaning each was completely different.

Again, the recommendation for Richard was for a minimum of 20 hours of multiple therapies per week, with much more for Michael.

While those hours could not be met, Mrs. Crow is pleased to note that all three boys are making progress. In six months, Michael has gone from "pure grunting'' to being able to repeat back "a fairly close approximation'' of any word he is being taught, although he does not yet try to say words spontaneously.

A loving mother who says organisation and a structured day have always been a key to running her household, Mrs. Crow says having autistic children also requires enormous amounts of patience and perseverance because they do not learn naturally but through being taught things over and over again.

Many of the simple things families of regular children take for granted are not available to these parents. Mrs. Crow cannot, for example, ask Geoffrey if he had fun or a good day in school because he doesn't know what "fun'' is, nor yet a "good day''.

He has to be taught how to play and manners are also learned by rote.

"Generally, they are extremely good boys,'' she assures. "They are very polite.'' Routine is important, and even before she knew her sons were autistic, Mrs.

Crow had established a timetable for certain things to take place right from birth. That way, the children came to understand that a specific sequence of events meant bedtime, for example, so there has never been a problem there.

The screaming fits, however, are a major disruption because they occur without warning and are unstoppable. Because autistic children cannot tell you if they are sick, as a concerned parent she has often taken them to the Emergency Room in the middle of the night just to make sure there is no serious problem.

While she is no longer embarrassed by these episodes in public, Mrs. Crow is aware that people are judgmental. They look at her screaming children and interpret her passivity as some form of indifference or incompetence.

"Sometimes it does far more harm than good to placate them,'' she explains.

"A well-meaning person can actually make the situation worse for you. In fact, you get to the point where you don't care what other people think.'' Mealtimes can be difficult too, for autistic children react to textures, and their food must be set out in a particular order. If it isn't, there's trouble, so in addition to the countless things parents must remember each day, getting the plate right is one of them. For all the problems and extra responsibilities, however, Mrs. Crow wouldn't change her sons for the world.

Like her husband Michael, she long ago accepted the situation and, far from any "poor me'' attitude, has dedicated herself to doing all she can to ensure that Geoffrey, Michael Jr and Richard reach their fullest potential.

HEALTH HTH