EulaleeThompson

A family's experience

The Taylors' son, Joshua, was just over a year old when they started to notice changes that made them uncomfortable.

"When he was about a year and three months, he stopped saying one or two words and became withdrawn. When I came home (from work) he wouldn't run to me, then I would sit beside him and he would continue playing. It got to the stage where he sat by himself, (as if) unaware of what was around him," said Joshua's mother Michelle Taylor.

Joshua had reached all the usual developmental milestones for babies and when the changes started to be noticed, as Michelle explained, they didn't "hit you at once, but you would just notice that oh, he is not doing this or that; we thought it was a speech defect".

Gradually, over time, the family noticed that Joshua was becoming more withdrawn. He was eventually diagnosed, at one year and five months old, as autistic. The impaired social and communication skills are hallmarks of autistic disorder, still not a very well understood condition, not only here in Jamaica, but around the world. Autistic children also display a very restricted repertoire of activity and interests. This diagnosis, as could be expected, was devastating for the family.

"From then it was downhill. When we got the diagnosis it was pretty much devastating. The other children at the time were two and four (years old) but it didn't affect them much (because they were so young). I got very depressed, my husband internalised it; you know, men want to fix things. It was the worst thing that ever happened it was a like a loss, mourning, a loss but I had to say, 'What do I have here?' and move on," Michelle said.

Hectic schedule

The family has been moving on with their lives; Joshua is now eight years old, the third child of Drs. Michelle and Matthew Taylor; his other two siblings are Leah, 11 years old and nine year-old Daniel. His siblings, though it hasn't been easy for them, have become part of Joshua's adjustment process - forcing him to play with them and feeling a sense of importance when they have to 'translate' his speech for visitors.

So, moving on but the 'moving on process' has not been a bed of roses. After working through the depression and feelings of helplessness that parents will go through when they learn that their child is not well and they can't fix it, they had to plunge the child into a hectic routine to manage his autism - in between pre-school, for example, there is regular speech therapy and occupational therapy. Michelle manages the routine with a supportive caregiver, Hopie Dossantos, and grandparents (especially Grandpa Taylor who helps with the picking up and dropping off), allowing her to spend more time with her other two children.

The hectic routine has been paying off; Michelle said that she has seen improvement in Joshua's language skills for instance though his speech is mainly about requests - "I want this or that".

"He has got to the stage where he brings things to me and show me his art. But he has a lot of fears, he's hysterical near elevators, travelling is difficult, he doesn't like crowds," she said.

Finding a school

Joshua (centre), who is autistic, does homework with his sister Leah and brother Daniel.

Finding appropriate pre-schooling (for special need children) was not easy, but the Taylors did find a school in St. Andrew where the principal, in addition to catering to Joshua's special learning needs, allowed him to extend his pre-school education to age seven.

Appropriate schooling is not the only issue; parents with autistic children just don't get the support of the general public because the childhood condition is not well known and understood.

"Autism is just a way of life for us (and) we like to go places as a family (but) when he is acting up in public, I can't control him and people think he's just spoilt, crying and screaming on the floor. With autism they like only special things; he likes fries for instance, so have to take him to special restaurants," Michelle explained.

The family leans heavily on their Christian belief to move on and living with an autistic child brings a new and deeper level of the meaning of life and existence.

"(This experience has) taught my children that life is not perfect and that God makes no mistakes. Life doesn't necessarily work out as planned, there are imperfections in life (but) these are blessings," Michelle states.

eulalee.thompson@gleanerjm.com