My "Gift of God"

This post is dedicated to my son Matthew, a name that means “Gift of God.”  Matthew was my first-born and I couldn’t wait for his arrival.  However, things didn’t go so well during my labor – his heartbeat would stop every time I had a contraction -- and when he was born, he was all blue and had to be resuscitated.  They whisked him off to intensive care before I could really comprehend what was happening.  But, after 24 hours of observation, they moved him out of the neonatal ICU and into the regular nursery, and everyone thought he would be OK.

Baby Matthew with Me

Matthew was a colicky and very sleepy baby, but I didn’t think anything of it, because he was my first-born and I didn’t know what to expect.  However, it soon became apparent that he had other problems, too.  He could barely sit up when other babies his age were crawling around.  Although Matt eventually learned to get around by rolling across the floor (it was amazing to watch how fast he could travel by rolling!), he was three years old before he took his first awkward step.  Our pediatrician suggested we take Matt to Riley Hospital for Children, as he was falling farther behind on his developmental milestones.  Riley ran a full array of tests that basically told us nothing, other than the fact that yes, he definitely was “developmentally delayed.”

We were next referred to the Association for Retarded Citizens (ARC) for physical therapy and occupational therapy services.  I was extremely upset that my son was being referred to ARC – I was certain he was just a little slow and would catch up someday.  After all, I came from a family of college graduates; there was no one the least bit slow in my line of ancestry and there’s no way my son was going to be retarded!  At our first case conference, after Matt had been a client of ARC for about six months, they stated that his prognosis was severe mental retardation.  I didn’t like what I was hearing and began to cry.  That was the day I finally began to accept that my son really was different from others his own age.  I was not the least bit happy about it, but I was beginning to believe it and eventually came to accept it.

Matt attended a pre-school program for special-needs children at ARC, and it was there that he took his first steps using a pediatric walker (similar to what senior citizens use, only much smaller).  After two years there, he moved on to the public school system, as was required by his age and the education system.  His school was called Park Hill Learning Center and it was exclusively for children with special needs from the ages of 5 to 18.  Those teachers were saints and I appreciated all of the moral support they gave me, and all the love they showed my son.  He was, after all, a very handsome young boy and a real charmer with his big brown eyes.

Matt During his School Years

After several years at Park Hill, in response to Public Law 94-142, which required all children to be educated in the “least restrictive” environment, Matt and all of his schoolmates were integrated into the public schools within their own neighborhood.  Matt started attending Carroll Middle School, where he began acquiring “normal” friends and where he learned his first curse words from a couple of boys who thought it was “funny” to teach them to him.  Oh, how I wished he was still back at the safe environment of Park Hill!  But he finally settled in and we eventually accepted his new school.  Three significant events happened while Matt was approaching his puberty years at around age 12 or 13:  1) He suddenly started having epileptic seizures, probably a delayed reaction to the brain damage he had suffered at birth; 2) He was found to have several traits of autism, which led the professionals to label him as autistic; and 3) He finally became toilet trained, which was quite an accomplishment for someone with Matt’s limited abilities.

Matt finished his public school years at Carroll High School, where once again he was quite popular with his “normal” classmates and his teachers, and where he loved riding his little yellow bus to and from school.  After “graduating” from high school (which really meant he had aged-out of the school system), he started going to the Adult Day Program of Easter Seals Arc (the new, more politically-correct name for the Association for Retarded Citizens).  This program is a safe haven for adults with moderate to severe disabilities where they work on daily living skills to help them become as independent as possible.  Matt has a lot of friends there, and he can’t wait to go to what he calls “Arc School” Monday through Friday.

Matt made a huge leap into independence in December of 2008, when he moved into an Arc group home.  It was a very difficult decision to make for me and his father, because we have cared for him all of his life.  One of the biggest worries of parents of a disabled child is what will happen to their “child” after they are gone.  These are children living in adult bodies and they cannot live on their own.  Matthew is 30 years old chronologically, but he only functions as a 3-year-old child; he enjoys some of the same toys as a young child and has the innocence and the capacity to love of a little boy.  So with all this in mind, and the realization that we were getting older, we finally decided to let Matt go.

Matt with Santa Claus
"Through the Eyes of a Child"

Matt enjoys living at his group home, which is a beautiful new home in Fort Wayne. He has five roommates – one male and four female – and they all have their own room while sharing a common great room and kitchen.  There is a lot of love in his house and the well-trained staff members take good care of the special residents.  As parents, we are always welcomed, and every weekend we go there to pick up Matt and take him “home” for the weekend.  Matt loves the routine and enjoys the benefits of having two loving families to care for him.

Some of Matt’s favorite activities are watching sports in person and on TV; practicing soccer, baseball and basketball at home; and learning how to play Wii bowling and baseball, which he enjoys doing with both families.  His favorite foods are pizza and cookies and his favorite person is Santa Claus; in fact, Matt says he wants to be Santa Claus when he grows up.  Matt loves his family and has been blessed with a loving family, whom he enjoys talking to on the telephone.  He is very friendly and knows no strangers; when he walks into a room or through a store, he will greet you with a smile and a handshake and tell you to “Have a good day!”  His laugh is contagious while he sees life through the eyes of a perpetual child.  And although he isn’t the child I dreamed of as a young mother, I love him immensely and believe he truly is a “Gift of God.”