Category Archives: Parents
Parent-focused blog posts.
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 : firstname.lastname@example.org.
Author: Susan Friedman
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/)
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.Help kids recognize sin and their need for Christ to overcome it.
- 2.Pray for God’s grace in their lives.
- 3.Model your faith.
- 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 –
- 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)
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
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.
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!