Our Journey With Visual Processing Difficulties And ASD

In recent years there have been numerous studies documenting visual perceptual impairments in those with Autism Spectrum Disorders. Much research does indicate that, these perceptual alterations are independent of social function (behavioral issues), and very often are either misdiagnosed, underdiagnosed or not detected at all. My husband Dan and I, have a 19 year old daughter (Jillian) a very premature baby, that was diagnosed at the age of 2 with PDD-NOS, a neurological disorder of unknown origin, and eye muscle problems.

For many years we searched for some answers to Jillian’s many disabilities. After having a kidney transplant in 2009 at the age of 17, Jillian was finally diagnosed with Joubert-Nephronophthisis, a rare neurological disorder that affects motor control, vision and the kidneys. Joubert-Nephronophthis is a “spectrum” disorder like Autism, and has many variants making it difficult to get a diagnosis and/or treatment. These disorders in addition to Jillian’s Autism, has made life very challenging for our family.

Over the years, Jillian received every type of intervention possible, to assist with her autism and motor issues. Unfortunately, we were not aware that she needed a great deal of intervention with her visual perceptual disability and visual delays. As a baby and a toddler were knew Jillian would need to have eye surgeries performed, as her prematurity caused some eye issues. One surgery was for strabismus (crossed eyes) and the other was for lazy eye (exotropia). Both surgeries were succesful – or so we thought. After many many years, we just assumed she could “see” normally, as all of her vision testing revealed almost 20/20 visual acuity and she no longer needed to wear glasses.

However, she did do some strange things – like tiltling her head in various directions, hold onto walls while navigating hallways in buildings or having a shower, and would often become hysterical navigating in new environments. She simply didn’t know where her body was in relation to the area of space she was in. We just assumed it was “behavioral”, due to the Autism, and her poor motor issues which made her unsure of her footing. Jillian also has many learning issues and delays, mostly centered around reading, writing, and math.  Both we and our educational teams over the years, just assumed it was from the Autism and/or her neurological disorder or mild mental retardation. None of us realized that her eyes could be causing her learning and behavioral issues.

The muscles in Jillian’s eyes looked good cosmetically, but we did not realize over the years, that she was suppressing the vision in her left eye.When she tries to use both eyes to see (convergence or binocular vision) she has double vision. Vision testing at several opthlalmic practices and at school with a Snellen Chart, indicated that Jillian had “normal”  20/20 eyesight. The Snellen Chart measures only the sharpness of vision, it does NOT test for eyetracking, aim, eyeteaming, depth perception, peripheral vision or visual perceptual skills. It cannot measure the ability to see adequately at 20 inches, which affects the capability to read, write, draw or perform math functions.

Those with visual perceptual disfunctions can have their entire world turned upside down, simply because they have great difficulty judging distances and depth perception, which in turn affects balance, large motor coordination and the perception of the environment. It can also cause numerous behavioral issues. Many individuals with ASD’s are very clumsy and very often, cannot participate in sports activities. Visual problems are more common among those with sensory impairments, and because of this, we were referred by Jillian’s Opthlmalogist to a Developmental Optometrist that specializes in Vision Therapy.

When the Optometrist did his evaluation, we were stunned to learn that Jillian had no depth perception, peripheral vision, binocular vision, and had a gaze aversion. Gaze aversions are common among those with Autism Spectrum Disorders. All of these issues can cause a myriad of problems, including but not limited to: eye strain, blurred vision, migraines, eye fatigue, eye pain, inaccurate hand-eye coordination, abnormal posturing, distractability, spatial disorientation, diminished accuracy and difficulty shifting focus from one distance to another. The list of symptoms is quite extensive and too numerous to be able to write about here, but you get the idea.

To date, Jillian has completed 24 sessions of vision therapy, and has done remarkably well.  For therapy to be beneficial, it must be ongoing until the patient reaches a plateau. This could take many months or years to achieve and this type of intevention is quite expensive because insurance doesn’t cover it. You can expect to pay between $1,600 to $3,000 upfront initially. It’s a shame that individuals with ASD’s, are not referred to a vision specialist as soon as they are diagnosed. School districts need to become more aware of this issue, so students can receive appropriate interventions at a younger age. We would highly recommend Vision Therapy (regardless of cost) to those that have a loved one with an ASD or know someone that does. For more information, please contact The College of Optometrists In Vision Development in St. Louis, Missouri (314) 991-4007. You can also email me for more information at : susan2518@gmail.com.

Author:  Susan Friedman

“He Isn’t Learning Through Reading!” How I Discovered Hyperlexia

By the time my son was 15 months old I knew something was  wrong.  When I tickled him he never  reacted.   When I called his name he didn’t respond.   It was just before his third birthday he was  diagnosed with classic autism.  I was  told he was neither high functioning or severe.
Moderately affected was the phrase they used to describe him.   He also had a number of accompanying  disorders such as Auditory Processing Disorder and Sensory Dysfunction.  I was devastated and I grieved the loss of  “normal” expectations I unconsciously had of him.  But I didn’t have the luxury of being  paralyzed by his diagnosis for long.   He  was not my only child and with a daughter only slightly older and a husband who spent a lot of time away with the Air Force, I reluctantly picked myself up and  began the journey.  Being a teacher I felt  completely responsible for my son’s education and wellbeing.  I took it upon myself to research and implement  whatever psychological, biomedical and environmental interventions I thought  could benefit him.  I tried diets and  supplements, occupational and speech therapy, and approximately 15 hours of ABA a week.   I am not going to pretend I was  okay in those early years.  In all  honesty, I was an emotional wreck, holding on by the simple fact that I thought  I was responsible for his “recovery.”  I  remember pouring over autism websites that issued instructions for 40 hours a  week of ABA and countless therapies that would ensure his recovery and I felt  completely inadequate.  I felt guilty for  not doing more.  It was a vicious cycle  of misery.

As my social circle began to morph into friends also with  children on the autism spectrum, I started to notice the difference between my  son and others.  No one else in my circle  of friends ever reported their son or daughter being obsessed by numbers or  letters.  Rubbish trucks and posting and  lining up of objects perhaps, but never the alphabet.  I didn’t think about the significance of this  at the time.  Perhaps I was simply satisfied that this was his particular area of obsession.  It became obvious in my ABA work with him that this obsession was in  fact very significant.

I remember trying to teach him the concept of long and  short.  No matter how many times I showed  him and explained it, he could not  demonstrate he understood.  I thought perhaps if I wrote down the words  he would be more likely to focus.  After  all he loved the alphabet and I was willing to try anything.  What I discovered was miraculous.  He could remember and associate the word with  the concept but only if the word was in writing.  I would attach a written word to concepts and  he could differentiate between them.  Eventually,  I could then attach the written word to the spoken word.  The spoken word was more likely to be  forgotten, but had a better chance of being remembered with the aid of writing.  How could this be? As an early childhood  teacher, and having taught children to read for some years, this made little  sense to me.  What did make sense was  that I had discovered something that could help him.

I was excited.  I made  appointments to see the team of professionals that were looking after his  development.  This included his teacher,  psychologist, speech therapist and pediatrician.  One by one they dismissed my claims.  They attributed his ability as a mere rote  based memory skill that was devoid of meaning.  How could this be?  I was  devastated once again.  I knew I what I  had discovered.  I knew he could do  this.  They tried to insinuate that I was  grasping at straws and that I should just accept the reality of his  limitations.  I was determined that I was going to give him every chance to succeed.  I started to teach him everything using writing.  It was his window to the world.  I carried a mini whiteboard with me  everywhere and in place of talking to him, I wrote.  In kindergarten he was in the top 2% of the  state in reading, albeit with limited comprehension, but he was beginning to  understand the world around him.  It was  then that I returned to the Internet.  This time I typed in “reading to learn.” 

I found a number of links that discussed  children with Down syndrome.  Some  mothers had found that by teaching their toddlers to read, their learning  improved faster than by speech alone.  I  felt confident that I was looking in the right place.  I stumbled across the term “precocious  reading”, which essentially meant very early reader.  I had never taught my son to read.  It seemed to be his first language.  He learned to read in the same way most  people learn to talk.   He spent an  inordinate amount of time in front of the fridge playing with magnetic letters,  sounding out sounds and saying the names of the letters repeatedly.  I typed into the search engine “precocious  reading “along with “autism” and hit the jackpot.  Hyperlexia.  It described a disorder that matched my son perfectly.  It described a precocious reader that struggles with language comprehension and showed many characteristics of  autism.

According to Wikipedia, approximately 5-10% of all children  with autism are hyperlexic.  There are  many people who believe that hyperlexia, being the other extreme of dyslexia, is a stand-alone disorder.  Others believe that everyone who is hyperlexic also has autism.  For my son, I believe that it is an  accompanying disorder.  He has not grown  past his symptoms of autism as they suggest in some hyperlexic literature, but his verbal comprehension is vastly improved.   The auditory processing disorder still makes it difficult for him to be  as eloquent as his same aged peers and his lack of abstract thought also  impedes his comprehension, but he is a far cry from the little boy who didn’t  understand anything I was saying to him at 4 years old.  He attends mainstream school as a Grade 5  student with a teacher assistant that is required less and less.  I’m very proud of all his efforts.  He tries very hard to achieve what he does.

The lesson I learned from this experience it is wise to  trust your instincts.  You know your  child better than any professional.   Clearly professional advice is to be sought but if I had listened to my  pediatrician, who offered me these sage words of advice, “Just concentrate on  your daughter,” I would not have had the joy of watching my son learn with his  greatest strength assisting him.  What  beautiful lessons our children on the spectrum teach us.  Without doubt, it is a struggle at times, but  seeing them develop, makes those struggles worthwhile.  He has changed me forever. I am more compassionate  and empathetic.  I am stronger for having  him to advocate for.  I am a better  person than I would otherwise have been.  I owe this to him.

Author: Tara Kaberry  (http://www.hyperlexia.net/)

No Matter What, Forever and Always

Love bears all things, believes all things, hopes all things,endures all things. Love never fails. 1 Corinthians 13:7-8

 The “if onlys” can get to a person, and they almost got to me the Sunday our youth pastor taught about how parents can help their children discover God. As he explained misconceptions to avoid and understandings parents should develop, I caught myself thinking, “If only we’d known this when our kids were young.”  And when he got to the four application points -

  1. 1.Help kids recognize sin and their need for Christ to overcome it.
  2. 2.Pray for God’s grace in their lives.
  3. 3.Model your faith.
  4. 4.Look for signs of true transformation.

- well, it was all I could do to not “if only” away the rest of the day.

But, what’s past is past, and all the “if onlying” in the world won’t change how we parented our kids. So I pushed away the “if onlies” and concentrated on a different thought: Did our years as parents yield other application points to pass along to help other parents right now?

 Lo and behold, the answer was yes. This point is known to parents who faithfully followed numbers 1 – 4, but whose children haven’t yet embraced God’s grace -

  1. 5.Love your child no matter what. Forever and always.

My commitment to this step was tested when our son moved across country, converted to a denomination foreign to us, and later entered the seclusion of a monastery.

“But they’ll only let us call him once a month, and we can only see him once a year,” I wailed to a wise man who didn’t use our son’s choices to judge our parenting success. “And he never gets to come visit us. What kind of relationship is that?”

“It’s the only one you’ve got,” answered our senior pastor, the master of practicality. “And you nurture it by calling once a month and visiting once a year.”

Following that advice, we loved our son. No matter what. Forever and always. One phone call a month. One visit a year. We also prayed for God’s grace in his life. We modeled our faith. We looked for signs of true transformation. After six long years, God worked a miracle and our relationship with our son was fully restored.

But not every family’s story has a happy ending. Some children remain estranged. Parents blame themselves for their kids’ choices. Though they parented well and faithfully, they feel like failures. Hurt piles upon hurt. And still, they are called to love their children. No matter what. Forever and always.

Impossible, but for this truth. Christ died for sinners. And he would have done so had all mankind rejected him and refused his grace. Because a man’s choice is not God’s failure. God’s love remains. His promises wait for sinners until their last breath.

He is a parent who loves his children. By his example, we can love our children. No matter what. Forever and always. Until our last breath.

Author:  Jolene Philo  (www.JolenePhilo.com)

What It Means To Be A Mom

Yesterday morning, I had a vivid just-before-waking dream. Our son, about three years old, snuggled in bed between Hiram and me.

He grinned when we called him the peanut butter in our family sandwich, giggled and squirmed when we tickled him. Along with his giggles, I heard the wheezy, asthmatic sound of his breathing – a condition called tracheomalacia which went along with his esophageal birth defect (EA/TEF) – something the doctors assured us he would outgrow as the cartilage around his bronchial tubes hardened.

I woke, disoriented and twenty-six years older than in my dream. I left our bed, where my husband, but no son, lay sleeping. I stumbled through our house, not the one we shared with our toddler son. I couldn’t shake the dream. It lingered all day long. The odd sound of our son’s breathing and the sweetness of his small, high voice and delighted giggles echoed in my memory. All day, I missed our child, ached for his small body crowding in between us, longed for his little boy, sweaty smell. More than once, tears came to my eyes as the realization that those years and those sounds, even the wheezy ones caused incessant worry, were gone forever. 

Because the doctors were right. Our son outgrew the tracheomalacia around the time he started kindergarten. He left his wheezy gurgles behind, along with his fascination with dinosaur bones, his adoration for Mr. Rodgers and the Land of Make Believe, and his love of Legos. (Well, strike that last one. He still groves over Legos now and then.)

In a few days, our boy turns twenty-nine, and I rejoice in the man he has become. His face is whiskered, his step confident, his laugh deep, his voice resonant, his breathing quiet. He is a good man – loving, thoughtful, creative, and caring.

But he will never be three again,

never jump into bed between us again,

beg to be tickled again,

delight to be the peanut butter in our family sandwich again,

giggle with his wheezy gurgle again. 

So this day, in the wake of a most vivid and lovely dream,

I am grieving for days that can never be again.

I am missing our little boy.

I am learning what it means to be a mom.

By Jolene Philo

How Welcoming Are You?

The Americans with Disabilities Act which was signed into law back in July of 1990 established a national mandate to protect persons with special needs from discrimination and other social injustices. 

As a result, we saw a change began to take place in our public school systems where every child with a special need began to be entitled to receive the same education right alongside their peers that were labeled non-disabled.  The ADA has also had a big influence on a shift to more inclusive neighborhoods for people with disabilities and a shift away from segregated residential facilities.   Not that long ago a meaningful job wasn’t always considered a realistic opportunity for a person with an intellectual disability.  But I’m happy to say that the workplace, like community and educational settings, is becoming more inclusive too.  

Friends, your church is in a prime position to model the spirit of the ADA or more importantly, model the example of what the Holy Scriptures remind us to do…”Treat others as you would want them to treat you.”  I’m here to tell you today that some communities of faith are doing a great job of opening their doors and being a place of inclusion.    It’s essential to find ways to make room for people with special needs in your community of faith.  Why?  Because Jesus evoked the inclusion process in His mission statement, He said:  “Go ye into all the world and preach the Gospel to every person.”  He didn’t add any disclaimer about excluding those who had too little ability, there were no exclusions for those who were physically or intellectually different.  

So how do you begin the journey of becoming a community of faith where you welcome and make room for the participation of people with disabilities, a place where everyone has a presence rather than just being physically present, a community of faith that ensures that everyone participates in sharing their life and not simply sharing space?  What is a good first step?  Well, it all starts with a simple assessment. 

 Assessments can be useful tools for reflecting on how are you doing or in this case “How welcoming of a community of faith are we?”  Assessments help you to take an objective look at the areas where you are strong, but they can also reveal the areas that need improvement.  As a community of faith we are called to be a people of change…not a people of status quo, a stagnant non-growing body of believers but a people who are striving to grow, to become more tomorrow than who we are today. 

The Church Welcome Assessment is a tool for prayerful self-reflection.  It can help to answer the question, “How welcoming are you?”

Special Needs Ministry Idea: The Safe Spot

It’s common for everyone to experience anxiety and stress when dealing with new changes or new routines.  As adults we know this.  However, for children with special needs such as autism, changes or new routines can result in significant stress and anxiety.  At this point, the child’s ability to communicate may be significantly reduced thus causing him/her to have a “meltdown.” 

In addition, children with autism can have difficulty regulating their emotions and stress levels. Therefore, these children benefit from specific, tailored strategies to help them cope and regulate their emotional state. The Safe Spot is one such strategy that should be considered by your special needs ministry team.  The Safe Spot allows children with autism to:

  • take a break from a stressful situation
  • regain emotional control to avoid a meltdown
  • recover after a meltdown

A Safe Spot is any specified location in your church (parent’s can also use this concept at home!) where a child with special needs feels safe, comfortable, and decreases the child’s  internal stress so that s/he can calm down.   

Here’s a quick 12-minute video for special needs ministry staff on how to develop a Safe Spot:

Missed Opportunity?

Have you ever kicked yourself in the seat of the pants, because you missed a golden opportunity? I think all of us can relate here!

1. We missed an opportunity to make a positive difference in someone’s life.
2. We missed an opportunity to be a blessing to someone who was hurting.
3. We missed an opportunity to witness to a lost friend.
4. We missed an opportunity to minister to our spouse or children because we were too preoccupied.
5. We missed an opportunity to make an eternal difference in a child’s life because we didn’t seize the opportunity.

There’s one more potential missed opportunity out there that I’d like to quickly share so that instead of missing this opportunity that God is bringing our way…we seize it.

 In two previous posts I’ve referenced a 3 question survey that 136 parents (who have a child with a disability) responded to and the results were:

1.  45% of parents who have a child with a disability indicated that they DO attend church!

2.  The remaining 55% of those parents who responded to the survey indicated that they DO NOT attend church.

3.  It’s the last survey question that reveals the opportunity:  “Would you attend a local church if it were able to meet the needs of your family?”

Of the 55% of parents who indicated that they did not attend church, 96% of them answered “Yes” to the above mentioned survey question.  96%.

There’s a group of parents out there who would definitely be interested in your Children’s Ministry.  They represent an opportunity.  But don’t expect to “see” them because these families often live very isolated lives due to their child’s disability.  A lot of them have given up on finding a place of acceptance.  But they’re out there.  And 96% of them would say “Yes” to an invitation to become a part of your community of faith.

Your Putting Me On A Diet?

Last week one of my friends, Dean Bohl, was looking for feedback about ideas concerning a Sensory Room for a special needs ministry…a very beneficial idea for many children with autism and sensory processing needs! 

Once you have what you need for a sensory room, what next?  Well, it’s time to put the child on a “sensory diet!”  What on earth is a sensory diet? Is it a diet of only certain foods or certain calories. No! 

A sensory diet is a term used to describe sensory activities that are used children with autism, ADHD, or Sensory Integration Disorder.

Just as your child needs food throughout the course of the day, a child with autism, ADHD, or SPD needs sensory input, and opportunities for getting away from stimulation, spread out over the morning.  A “sensory diet” is a carefully designed, personalized activity plan that provides the sensory input a child needs to stay focused and organized throughout the morning.  In the same way that you jiggle your knee or chew gum to stay awake or soak in a hot tub to unwind, children need to engage in stabilizing, focusing activities, too.  Young children, teens, and adults with mild to severe sensory issues can all benefit from a personalized sensory diet.

Here’s a resource for you that identifies a handful of sensory diet activities that could be incorporated into your child’s Sunday morning church routine:

Sensory Diet Ideas

Special Needs Ministry: Is It Worth The Extra 5%?

Most of my friends on my Facebook page are parents of a child with autism or other special need…just like my boys.   

Last week I mentioned that I was curious about how many of these families were churched.  So I used Survey Monkey to design a 3 question survey and then posted it to my Facebook page.  I was surprised to find out that 20% of these families attend a church that does NOT have a special needs ministry. 

It became apparent to me that their communities of faith have found a way to be welcoming and inclusive.  How?  By using a model emphasizing the different ministries within the church that work together for the purpose of welcoming and including a child without having to develop a special needs program! 

The question now becomes “How many more families of children with special needs might be reached for Christ by developing a special needs program?” 

So, I surveyed my Facebook parents and asked this question:  “Do you currently attend a church has a special needs program?”

136 parents responded to this survey question.  25% of them answered “Yes.”

That’s 5% more families who attend a church with a special needs program than those families who attend a church that does not have a special needs program.  5%…doesn’t seem like a big difference, does it?

Is it worth going to thru the effort of developing a special needs ministry to reach an extra 5%?  When I think of “biblical math,” I believe the answer is yes:  “Or suppose a woman has ten silver coins and loses one.  Does she not light a lamp, sweep the house and search carefully until she finds it?  And when she finds it, she calls her friends and neighbors together and says, ‘Rejoice with me; I have found my lost coin.” (Luke 15:8-9).

20% Of My FB Friends Want To Thank You For Something…

As a father of 3 boys, each with special needs, I’m drawn to other parents who are in a similar situation as mine.  That’s the reason why 85% of my acquaintances on my FB page are parents of special needs kiddos also. 

www.facebook.com/makingroom

I was interested in how many of them attend church even if it does not have a special needs ministry.  So I used Survey Monkey to design a survey and then posted it on my Facebook page.  Here are the results of the first survey question:

“Do you currently attend a church that does NOT have a special needs program?”

136 of the parents responded to this survey question.  20% of them answered “Yes.” 

I wanted to share some of their individual comments with you.  These comments are a reflection of how appreciative parents of special needs children are for churches that have been a place of welcome and inclusion:

Elaine:  “We attend a very small church and there are only 3 children in the intermediate nursery. They take excellent care of my son.”

Terry:  “Our church does not have a special needs program. We are a small church and kids with special needs are welcomed and have roles all their own. My son is an altar server. Other children are simply part of the congregation. It is a blessing.”

Margaret: “Our church does not have formal program, but has provided a shadow in sunday school for our son for years.  They tweak the program each year, and currently rotate high school boys to shadow him.  And, yes it does allow us to attend church which I find peaceful and renewing.”

Bill:  “Our church does not have a specific Special Needs program, but they do teach the leaders about different disabilities. They have been so welcoming and accepting of my son. They would do anything to help make it so he could function in the Primary. So far he does fine with the visuals up and the routine is the same week after week. I am blessed to have it this way for us at Church.”

Lorraine:  “No churches in my area specifically have a ‘special needs’ program. But some are more welcoming and accomodating than others.  It was very hard to find a church to suit not only our special needs but our needs as a family to make sure everyone gets what they need spiritually.  But I think we have found one now.”

Ashley:  “Although the church I attend does not have a special needs program, they have accommodated my son’s needs from the time he was little. At three years old, they gave him is own Sunday school teacher, and she was amazing! Since then, he has attended regular classes with the children and youth, and the teachers and other kids are so friendly to him. These kids who have been kind have also been blessed to learn how to have a friend with special needs. It has been a win/win situaton. I am so grateful to these parents and kids every day for doing what Jesus would do–being kind.”

Beth:  “Our church does not have a special ed program but they are very open to special needs kids and include them as much as possible. I would like to see them offer more support to the parents though like respite days when we can leave our kids for a brief time for a date night.”   

I wanted to add my “thank you” to all of you who are finding a way to include families who have a child with special needs!

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