Jonny – A boy who almost fell throught the cracks in the system.

boy surrounded by question marks

Jonny is the sweetest 17-year-old I have ever met.  Green eyes, jet-black-curly hair and a mile-wide grin.  One of those faces that draws you in.  Jonny has a few friends and genuinely cares for others.  He loves people and people love him. Jonny’s parents are educated.  He has his mom’s eyes.  Jonny’s parents are good people. Jonny has had good teachers. Jonny had an educational plan.

During the summer of 2011, Jonny’s pediatrician told his mom that Jonny would never be able to oversee his own medical care.  Jonny had no specific medical disorder and thus there is not much to oversee.  Jonny; however, did have a learning disability.  A learning disability that all were aware of. A learning disability that had not affected his health. Jonny was healthy. However, Jonny had challenges that would impact his ability to care for his own medical needs. Did not Jonny’s pediatrician see this before age seventeen?  His mother was given eight months to research and make decisions on guardianship status. She had eight months before Jonny is in control of his own medical care.

Jonny had received special education services since 3rd grade.  Jonny learned. He progressed each year with his academic skills.  He can read-some. He can do some math.  The problem is, no one mentioned to mom that he might need support after age eighteen. He might need or would need support past high school. Supervision, for the rest of his life.  Yes, she knew he was behind but did she really understand how far?  Important information had been lost. Support was provided but information was not received.

One of Jonny’s weaknesses was that Jonny cannot or had not every really solved a problem.  He had friends, they help when he asks.  Jonny had great teachers, they love him and help when he asked.  Jonny had a cell phone and had tons of text support.  “Mom – Can’t find my homework?”  “Dad-Where are my jeans?”    “Jill-When is lunch?”  “Pete-math room #?”  His text history was rich with the information of his success.  His strength.  You see.  Jonny was great at asking for help.  He was great at listening and following directions.  His weakness. Jonny panicked if someone was not around to answer those questions.  He panicked if life problems were not solved for him.  How did Jonny get to 17 years of age and no one catch this problem.  Everyone is quick to blame.  Many feel guilty.  Jonny had fallen through the cracks in the systems set up to support him.

Jonny had other struggles. Jonny had a limited diet. He ate 18 foods.  Ten purchased from different restaurants.  He brought his own food to friends homes.  Several even clear out a space in their fridge for him.  Jonny was tall, Jonny was fit.  Eighteen Foods!   Jonny had a great family system.  They had no clue how to help Jonny with this eating differences.  I found out that around age ten, they decided family mealtime had to stop being a battle.  For ten years they fought, for ten years they tried.  Listening to all they tried made my heart ache. But still Jonny had eighteen foods. One kind of green bean, one kind of chip, one cookie, one brand of hot dog, one-one-one.

Jonny had one chore. He took out the trash. He could cook one thing-Mac and Cheese. He did not know how to do his laundry, did not know how to fill a dishwasher or wash dishes by hand. He did not know how to use a can opener, make a bed, vacuum or clean a restroom. He took a shower on Saturdays. He skipped the shower if the shampoo was missing. He had been told to always use shampoo. So…no Shampoo, no shower. Seemed logical to Jonny. Jonny disliked shopping and thus wears what mom buys. She know what he likes, sport shorts and T-shirts.

Jonny is the youngest of several. Jonny is 10 years younger than his next oldest sibling. Siblings have always been around to help Jonny. They all have his number and regularly support him.  It’s just the way things developed.  All knew Jonny struggled. All helped. But Jonny is now seventeen.  Times flys by so quickly.

I met Jonny (name changed) and his mom at a transitional conference in 2011.  She was in full fledge educational mode.  She had been blind sided and never understood the depth of Jonny’s challenges until his seventeen year old well check at 17 years 4 months.  She was sweet, elegant and eager to please.  She did not blame.  She understood things needed to get done quickly and blaming was not going to help fill in the gaps.  The system did not mean to omit Jonny.  Jonny had just happened to progress, to pass from grade to grade, to blend into the background.  He is the kind of kid people want to help.  That one strength became his greatest downfall.

I asked Debra what she was going to focus on during Jonny’s Junior and Senior years.  “Problem Solving and Self Care” she quickly responded.  How was Jonny going to grow into a young twenty something if he could not problem solve?  How was he going to survive and live if he could only cook one food, would not enter a clothing store and only knew how to take out the trash?  A family meeting had been called.  A school meeting had been called.  All were now on the same page.  Every time siblings got a text, the response was “what do you think Jonny”   or  “Jonny tell me what you think you should do”  and then a message was sent to mom. Chores were assigned. Support provided only when needed. Jonny only had a few years to learn some very important skills.

Why am I thinking of Jonny.  I met a new “Jonny” yesterday. How many “Jonny’s” are around?

Of all the special needs kids the “Jonny’s” are the ones I think need the most help. I remember them.  I pray they find the support they needed.  Special needs kids, on an education school path, need to learn to problem solve and work on basic self-care.  Kids with learning challenges take longer to learn, they need repetition and real-life learning experiences.  The more they experience prior to that last summer, the more possibilities may await them.  These kids can learn.  Kids with learning challenges can get jobs, receive education after high school.  They can, Yes they can.

A Prayer From A Real Life Mom

Please World-Be honest with us.
Do not wait until our child is seventeen.
Help us open our eyes and understand.
Help us, to help them.
We may bark but will seldom bite.
Support us but let’s keep it real.

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2 thoughts on “Jonny – A boy who almost fell throught the cracks in the system.

  1. I am a teacher. The hardest part of my job is informing parents that their 14 year old child can not read. How do these cracks exist? Who are we protecting?

    • All systems have their cracks. Parents also have their faults. Those who want to be blind often are. One syatem can’t do it all. Sometimes the wrong decisions are made. So many reasons for the jonny’s of the world. It is amazing how different each school and classroom are. Its amazing how different each parent is. Sorry but I have no answer

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