Christine Wieczorek’s pale blue eyes sparkled with a bittersweet joy as she talked about her grandson, Aiden.  Memories brought soft tears that appeared in the corners with each mention of his name.

Like many grandparents, news of his impending birth elicited joyful congratulations from friends and family as preparations began, shower invitations mailed.  Her first grandchild!  The day of his birth was a testimony to miracles and a day of thanksgiving.

Within the first year, however, the family began to notice inconsistencies in his behavior.  Aiden didn’t coo or smile like most babies. When playing with his toys, he never made eye contact.

“We thought all along that Aiden’s development was not at a normal rate,” Christine said.  “As time went on, it became apparent that Aiden had all the tendencies of an autistic child.”  At the age of 21 months, Aiden was officially diagnosed as autistic.

CHALLENGES

“The fact that Aiden cannot communicate in words is very difficult.  There are days he can’t even relate hunger to us, so we must show him food; if he accepts, he’s hungry.”  They feel fortunate that Aiden has a calm temperament—unlike many autistic children.  “Aiden does not have a lot of tantrums, which makes caring for him easier.”

There are days when Aiden appears to be well-focused on his environment; other days, he is lost in his own world.  “There are times I walk into the house and call to him. He will stop what he is doing and run to me and gives me hugs and kisses; there are other times he does not respond at all.  I can walk right up to him and talk to him and he is not aware of my presence.”

Currently Aiden is able to make two sounds.  He is being taught sign language and occasionally uses a sign or two to communicate.  “He is also aware now when he urinates,” Christine said.  “He will stop what he is doing and touch his diaper.”

Aiden’s acute sense of smell influences everything he does, causing occasional problems at dinnertime. “If he doesn’t like the smell or texture, he refuses to eat a particular food; after eating and washing his hands, he has to smell them.  If he responds in a negative way, I rewash them until he is satisfied.”

GOOD DAYS AND BAD

Like many other children, Aiden has his good days and his bad.  “On a bad day, he is cranky and wants to be alone or wants to cuddle with his father.  On good days he will focus and respond to our speaking to him.  These are the days when he appears the most happy. Other days he is in his ‘special place;’ amusing himself with his toys and is unaware of anything around him.”

There are also those special moments.  “One night, Aiden was tired and he climbed on the couch and let me read two books to him before he fell asleep.  Usually he wants to be in control and turn the pages.  This time he wanted to hear the entire story being read to him.  That was one of my special moments with him!”

Christine feels that having Aiden in the family has brought them closer together with the special bond of helping him to be the best that he can be.  “He teaches us the value of each and every day without speaking a word.  He gives so much warmth and love without language.  I believe autistic children could teach so much to humanity.”

FUN THINGS!

Aiden loves books and surrounds himself with them whenever possible, sitting with them for hours.  “There are times he will be sitting in his high chair or on the floor and all of a sudden he just starts laughing those infectious giggles!”  He is also fond of light switches (where he learned the difference between ’off’ and ‘on’) and measuring things with a tape measure in the basement workshop.  “I have a Christmas decoration that he loves; he gets it whenever I am there.  I play a special game with it.  He lets me know he’s ready to play that game by getting the decoration.”

Aiden can be a bit of a tease, however.  “He has learned that if he wants something that he’s not supposed to have, he gives us kisses and inches his way toward the forbidden!  What a delight!”  The winter season did not go by without its own special fun time.  Not interested in the big snow hill in the  back yard, instead, Aiden delighted in watching the snow fall as his grandmother tossed it into the air. “We made a game of my picking up snow, crouching down somewhat and bending to the count of ‘one, two, three’ and then throwing the snow in the air and squealing Weeeeee!  Aiden loved that and he started to engage in the counting through his own crouching and bouncing to the count and he would giggle and giggle as the snow fell.  If I didn’t get snow fast enough to throw again, he’d pick some up in his tiny little gloved hands and hand it to me and he’d start his crouching and bending.”

SUGGESTIONS

As a grandmother, Christine feels that it is important not to blame the parents for their child’s inability to perform.  “It is not their fault,” she said.  “It is not something they did or didn’t do that hindered development.  We (as grandparents) need to be there supporting the family and their choices, despite our feelings about them.”  As an example, special diets that may be used as a part of treatment.  “If the grandchild is on a special diet (such as gluten- or casein-free), we must abide by that, as much as we want to give our grandchildren special treats.  We must learn new recipes for treats that they can have.”

Babysitting is another way to support the parents.  “We must offer to babysit to give respite whenever possible and we must never compare our angels to others’ grandchildren who are developing at a normal rate.  It is very difficult to be around other children their age and not wonder why it isn’t that way for our little ones.” It is also important for family to learn to share their joys.  At Christmas time, Aiden traveled with his grandparents to Meijer Gardens to experience the festive display.  “They had an elaborate train set up and all the children Aiden’s age were awe struck by the sights and sounds. Aiden was not aware of any of it, despite our urging.  He saw a leaf on the ground.  He picked it up and that was his joy for the entire outing.   So we learned to find joy in the leaf through Aiden.”

RESEARCH

Christine had done her share of research on the subject.  She highly recommends the Autism Society of America, http://www.autism-society.org as a valuable source of information and support.  “I believe that the state and federally funded programs through the schools are as effective as the costly ones that most cannot afford.  Consistency and reinforcement to whatever program is key to development.  Understanding that each autistic child is unique and as individual as the rest of the population is important.  Our special children will develop to their potential and whatever that is, the love and joy will always be present,” she said.