Stories From the Heart: A Mother Knows Best

A mother knows when something isn’t right. Even at 19 years old I knew that there was something different about my baby.  I knew that his life was going to be a challenge and that mine would forever be changed from not just that of a carefree teenager to a young parent, but to a parent of a child with a condition that would force me to recognize that I had passed on a trait so complicated it would take most of my adult life to help him find his way.

I named him Justin Daniel, he was beautiful.  He arrived five weeks early but the doctors said he was a picture of health!  From the moment I held him I was sure there was something different about my baby, but I quickly dismissed it for new parent jitters. But within months it was obvious I was right.  He wasn’t hitting his milestones.  Everything was delayed.

Justin had some other odd behaviors as well, he didn’t sleep through the night, loud noises bothered him, he didn’t like to make eye contact with people, he preferred not to be held unless he was nursing, and he only liked to play with toys the had a predominance of red in them.  The only exception was his teddy bear, George, who was brown.

When Justin got to the age of two and a half he still wasn’t talking, I decided it was time for an evaluation, the results were shocking.   He had what appeared to be autistic tendencies or features.  But because of his age autism was not a diagnosis they would give him.  Instead he diagnosed with an expressive and receptive language disorder.  By the age of three he was using words but only in form of echolalia, repeating words back to you.  He still rocked and had severe gross motor and fine motor control issues.

Finally after he was potty trained they entered him into an early childhood program where he began to flourish.  The second diagnosis they gave him was autistic tendencies with expressive and receptive language based disorder and mental retardation.  I was shocked.  I refused to believe that my son was MR.  How could they decide that a three and a half year old child was MR when he could not sit still long enough to be adequately evaluated?  Fortunately not all the team agreed with the diagnosis and it was expunged.  The services continued and he stayed in the early childhood program until he was five.

Once he was five it was time to decide what to do, by now he was communicating at one year behind age level.  He had made great strides.  He was diagnosed with expressive and receptive language disorder but we made the decision to put him in a private non-service school.

When you are a parent of a child with these disabilities, sometimes you want to believe your child is normal.  They are better, it has gone away and he will be fine now.  What a mistake that was.  We got through kindergarten okay, but first grade saw a teacher who was very unsympathetic and was described by my son as ”a big fat frog face.”  Needless to say we did not make it through first grade.  Private special education school here we come.

Another thing about having a child with special education needs is there tends to be a lack of friendships, especially when there is a communication disorder at the helm.  Justin didn’t know how to start conversations with other kids; he just didn’t know what to say to them.  He had too many things to say in the form of questions.

I knew as a parent I had to find a way to help my son develop friendships, it wasn’t just about academics and the kids even in his school for special education found him different at his young age.  I was heartbroken for him.  He was isolated.  There were kids on our block and he would play with them a little, but there was a missing link with them as well.

Justin didn’t appear to care that much about not having friends to hang around with, he was content to play by himself. But as he got older the more curious he got in other people.  I pushed him to socialize because I felt it was important.

His first introduction to having to do this on his own was with the group that worked with kids with all kinds of disabilities, they took them on trips to places they would never be able to go otherwise and give them experiences they would never forget.

That is where he met his first best friend Bobby. Bobby also had disabilities; he had Cerebral Palsy and used a wheelchair to get around.  Justin and Bobby became best friends while at space camp.  Justin helped Bobby get around and do things, and Bobby helped Justin communicate and come out of his shell.  It was a match made in heaven.  Upon their return they were inseparable; they spent the night at each others houses, went to more events together, and became the best of friends.  For several years until Justin moved out of state he and Bobby remained great friends.

After the move Justin had to start all over again, new school, new friends, a new life.  Before he moved to his new school, he spent the summer in Nantucket, at a caddy camp.  He did a lot of growing up that summer.  He was teased and ridiculed, not given any breaks by any of the other boys, no one wanted to be his friend, but he stuck it out.  He wanted to make money to buy his first car, and he did make good money.

He also learned to get himself out of a couple jams, like finding transportation to Martha’s Vineyard to meet a friend of ours when the plane was cancelled.  He was able to problem solve his way through, and found our friend without even knowing where to look.

His disabilities in school were not as prevalent as his problems with receptive and expressive language, which did cause some problems in classes where discussions where part of the curriculum, and a lot of note taking was required.  He still had his autistic tendencies this showed up in flicking light switches, playing with any switches actually, his obsessive compulsiveness: everything in his room had to be in perfect order.  He actually labeled all the cabinets in the house for me.  And when the groceries arrived he would make sure they all got put away in the proper place.

It was always my hope that Justin would be able to not only get a job but hold one down successfully.  I was sure he would do a good job as OCD as he was, he had gotten his drivers license and was very careful so I was pleased with that, still he had a long way to go.  He got a job at a theatre as an usher, and then was moved to concession.  He did so well he was quickly promoted to cashier and within six months made supervisor.

Justin was surpassing expectations of the diagnosticians many years ago telling us he was MR and the most I could hope for was his working at a fast food restaurant wiping down tables. He was only seventeen and already supervising, plus going to school full time.  He was working thirty hours a week sometimes, with a disability, managing school and his job.  Within another six months he was promoted to manager.  Justin was doing well in school and at work.  His social life was lagging but he was excelling in all other areas.  I was worried about the hours he was working and warned him about it, but he thought he could handle it.  So as long as his grades did not suffer I let him continue.

Then it hit, one day I went into his room and he was gone.  Bags packed bed made and no Justin.  I was terrified.  He had left.  No note, he had just disappeared.  I was frantic.  I tried calling him and no response.  This is how Justin dealt with stress.  It had gotten to be too much for him.  He had no outlet.  I contacted the police and explained his situation to them and they were nice enough to put out a missing persons report on him because of his having disabilities.

About twelve hours later I got a call from him.  He was several hours out of town and in tears; he wanted help but didn’t know where to turn.  We talked and it was decided he would come home and we would strategize on what to do about work and school.  Things changed after that, he resigned from his job and got one that was not as stressful, he learned a lot about himself but realized he could not balance work and school to the degree he was doing.  The key to his success in learning this was that I did not interfere and save him from his learning this he got to learn it on his own.

Justin graduated from high school having learned a lot. He has a positive outlook on his life, he knows he has disabilities but he has a handle on them.  Since high school he has entered college and begun studying for a degree in business management.  He is also working as an accounting coordinator where he does accounts payables and receivables, works with students who have disabilities and teaches them to do financial planning, writes contracts for clients, and plans social recreational activities for students.

He has many friends at the age of 24; he has surpassed his difficulties with expressive and receptive language based skills.  His autistic behaviors are hardly noticeable and he is one of the most social people I know when it comes to being at a party.  He has surpassed expectations and actually owns his own home now.   Justin is also a national public speaker.   I owe it to all the programs he was in and his tenacity that he is the success he is today.

The one thing I know about working with young people who have disabilities is you have to let them have both successes and failures.  We can not rescue them each time they fail or they will give up trying.  We must push them to have experiences that will allow them to experience life the way anyone else would.  If we don’t we are condemning them to a meaningless existence, one that we create for them.

By Veronica Crawford

Veronica Crawford is the author of “Embracing the Monster:  Overcoming the Challenges of Hidden Disabilities”,  Brookes Publishing 2002.

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.