A Sit Down – with Michele Hillman
This post appears as part of Sit Down – candid conversations with real people detailing their journeys and experiences with Vision Therapy.
For the benefit of our readers, can you explain how you are involved in Behavioral Optometry?
I’m the parent of Joshua, who is 8 ¾. He started VT at age 7 ¼ years. Joshua’s eyes from birth were crossed. We saw a Pediatric Ophthalmologist at 16 mos. and he recommended patching. The patch never stayed on and was therefore ineffective. Joshua underwent strabismus eye surgery in both eyes at age 22 mos. The Pediatric Ophthalmologist said had he not undergone this surgery he would have been blind in one eye by age 2. He also was not speaking well and he was then referred to the infants and toddlers program through the Carroll County by the pediatrician at the time. Between September 2008 and May 2009 Joshua went to see specialists at KKI and JH in a study they were doing at the time on autism. After the study the assessment came back developmental delays in many categories. So we hired an advocate to assist with the school system as speech was one thing but add multiple delays, it was over my head. Between the ages of 3-4 he had a significant amount of ear infections which led to him having PE tubes in both ears. The doctor that performed the ear surgery stated that Joshua was hearing for 4 years as if you were under water. Everything he heard was garbled! In Early 2010 he was seen by the KKI staff at the Center for Development and Learning. He saw many therapists, OT, PT, speech, etc. The speech pathologist at KKI recognized Joshua had dysarthria. We found a local SLP and he has been going to her for years now. During this entire time he was provided assistance through the county school system for his speech and developmental delays. His father and I took him in August 2010 to see a Neuro-Behaviorist for diagnosis. The tests came back that he was PDD-NOS moderate autism. We were told that Joshua would live with us for the rest of our lives, probably not be able to hold down a job, and probably not function well in society. At that time he would be repetitive, line trains up in a straight line, routine oriented, didn’t like to go anywhere but home. No stops after pre-school. This behavior is very indicative to autistic children. In the meantime, Joshua saw the Ophthalmologist who performed his eye surgery on 3-6 month intervals. At the age of 4 he needed glasses. We got him glasses. When Joshua watched TV he was 2 inches away from a 57” screen TV. I kept saying to him, sit back and watch TV, can’t you see? We would go back to the Ophthalmologist and I would ask “Why is he standing so close to the TV with his glasses? Is he not seeing right? The Dr. just said he’s a boy he will grow out of it! His Kindergarten OT had a private practice and we took him to see her during that summer just before entering first grade. She noticed that he was standing close to objects and while reading he would hold the book so close to his face. She recommended that she perform the Sensory, Integration and Praxis Test (SIPT) which would then give us a greater understanding where Joshua was at. The results came back and Joshua’s scores were below avg. The OT recommended vision therapy for Joshua. We were skeptical at first as some folks told us “oh don’t waste your money, Vision Therapists are quacks!” Other folks said “proceed with caution”, and other folks said “I had vision therapy when I was younger and it made a world of difference in my life!” I did have positive feedback from another Ophthalmologist, much younger, who believed in VT. I had never heard of VT. We decided nothing ventured, nothing gained so we got in touch with Dr. Benshir for a consultation. She said that Joshua’s eyes were treatable and that it would probably be about a year and a half depending on how receptive Joshua is to the therapy. Joshua enjoyed playing basketball and T-ball but his running was not great, his balance was off and he would not look me straight in the eye among other abnormalities.
At what stage did you first realize he was having difficulty?
Not sure how to answer this because there are so many possibilities as to when he was having difficulties.
Had you ever heard of Vision Therapy prior to those events?
I had heard of Vision Therapy through a friend but it was only in mention of her son. Once I found out Joshua need VT I called her and inquired as to whom she was referred to and if they took their child for a consult.
How did you first come to learn about Vision Therapy?
Referral from a private OT that had Joshua for his Kindergarten year. She has a private practice and we decided to have him do OT during the summer. She picked up on how he was using his head a different way and the fact that he was holding things so close to his face to see them. She did the SIPT test and the results came back below average in all categories. She said she thinks he needs a vision therapy eval.
Can you describe his experiences in school prior to Vision Therapy?
Bad. He struggled with writing, social skills, reading, talking, speech, hearing, loud noises, running, lots of people (overwhelmed and overstimulated), sensory issues (not as bad today as it used to be).
What other solutions have you tried?
We tried OT, Speech (which he is still in), therapeutic riding, and Listening Program. Joshua could not do OT while in VT so he has picked OT back up since graduating Vision Therapy.
Was medication ever an option?
Yes, and we opted not to medicate. This was before Vision Therapy. He is fine today and glad we made the decision not to medicate.
Did you ever visit an Ophthalmologist?
Yes. At 16 mos. we saw a Pediatric Ophthalmologist. We patched for a couple of mos. Joshua would not keep the patch on. We were told by the Pediatric Ophthalmologist that if Joshua did not have strabismus eye surgery in both eyes before age 2, that he would go blind in one eye.
What is your child’s current status in their VT program?
Completed in June 2013.
Were you surprised that Vision Therapy homework was being assigned and was getting it done an issue?
Yes and yes. Joshua did not like doing the HART chart. That was the most difficult for him to do. It was hard for us to get a lot of the homework done as I had major back surgery during this time (was incapacitated for 8 mos.) and was not able to do much. However, we were told that the sports he was doing (basketball and baseball) counted toward therapy exercises. He enjoyed the ball toss with eye tracking, weights for balance not so much, nuts and bolts were better, and others we did were o.k. exercises. He did not enjoy doing them but knew he had to do the exercises. The office rewarded the kids who did homework with tickets for a monthly drawing and Joshua won the prize one month. Each time he went to therapy and did well he got to go to the prize box. He loved that!
At what stage in your program did you first start to notice progress?
We noticed changes about 4-6 weeks into therapy that things were happening. Academic changes were the first changes we saw. His grades improved, the special education teachers and teachers noticed a difference and that he was starting to be able to read and write much better, his vocabulary has changed and he uses bigger words (have no idea where he gets them from) and uses the appropriate context. Lifestyle changes were he was no longer bed wetting, not lining things up in a row like he would do before, he stopped asking the same question over and over (like 75 times believe it or not!), tantrums were less, his speech got better and re-diagnosed from dysarthria to maybe apraxia. He is able to handle loud noises, looks forward to playing, can put legos together, no longer wets the bed, he did also try new foods but texture (sensory) is still an issue. His confidence, I think, was never really affected because he is on the ASD and is o.k. being by himself, he prefers it actually. He’s kind of like me, doesn’t really care what others think as he’s going to do it no matter what.
A lot is made of the incredible expense associated with Vision Therapy. Some argue that a few thousand dollars to improve a child’s life is a drop in the bucket, while others balk at the exorbitant fees. What’s your opinion? Was cost ever an issue for you?
The cost is not cheap! That was one of our concerns. However, with what he had been through his entire life, we could not leave this stone un-turned as we would always wonder “what if?” We also said if it doesn’t work – nothing ventured nothing gained. Once we had the consult with the Behavioral Optometrist and she said that it would take about a year and a half of therapy depending on his receptiveness, we were glad we went and had the consult. That meeting is when I learned he was seeing two of me. She explained what was going on and said that once he has VT things will fall into place, and that he would need to pick other therapies up at the end, such as OT.
Our insurance company, XXXXXXXXXX – an HMO, would only cover the costs of the initial consult under medical and the reassessments every 16 weeks. We paid out of pocket for the doctor to write up a report and meet with us every 16 wks. We did receive financial assistance from Low Intensity Support Services (LISS). Unfortunately, LISS will no longer pay for Vision Therapy as it is not one of the accepted “therapies” after August 2012. We would do it all over again. There is no price tag on the quality of life.
The efficacy of Vision Therapy is often questioned by parents and other professionals. Some have even stated that Vision Therapy is “quackery”. What’s your take on this?
OMG! Quakery is what our Pediatric Opthamalogist told us after the OT said he needed VT and even one of the pediatricians in the practice we go to said that. They both said they “just want your money”. The Pediatrician proceeded to hold up fingers far away from my son and asked him how many fingers am I holding up? He answered her correctly, however, she failed to recognize the signs of him turning his head to read those fingers. Other doctors have said be cautious and research vision therapy. I did contact the Ophthalmologists office that my husband and I go to get their opinion. The one lady said she had Vision Therapy at age 18 and she totally believes in it. I then spoke to the Ophthalmologist who happened to be next to her, she totally believes in vision therapy. That office today recommends people for vision therapy if needed.
What I have to say on the matter of this is if you have a child with any sort of issues, do not leave one stone un-turned, what works for you may not work for others, never take NO for an answer, and if you ask a doctor a question and they cannot give you information about it or point you in the right direction it is time to seek multiple opinions. You, as the parent, have to speak up for your child and you know your child best. Everyone should be open minded to all sorts of therapies, etc. If I stopped short saying, “oh VT is so expensive and I don’t have the time nor the money to do this”, my child would be left as an unproductive member of society and we would be dealing with more issues and therapies for the rest of our life not to mention his and the cost would be exuberant.
Your passion, mixed with Vision Therapy experiences, has taken you above and beyond most people’s experiences. Can you tell us about that?
My passion lies with me wanting the best for my son and spreading the word of Vision Therapy. When we noticed how well he was doing in school and at home after the 4-6 weeks of therapy, we were elated! One has to understand that when my son had his strabismus surgery at 22 mos. I was o.k. with it as strabismus runs in my husband’s side of the family. Thought o.k. well the eyes are straight that is great. The Pediatric Ophthalmologist never referred us to vision therapy and thought all is great as the eyes are aligned. Fast forward 5 years later when in consultation with the Behavioral Optometrist, and she asked if the Pediatric Ophthalmologist referred you to vision therapy after surgery? I said no! If he had, we would have done it! I feel my son has been robbed of 5 years of his precious developmental years and child years because this Pediatric Ophthalmologist neglecting to inform us of vision therapy! It is a shame that the Pediatric Ophthalmologist took an oath to help children, yet is happy to take my money and my insurance company’s money but still not have the “eye” health of my son’s wellbeing in the best interest. There should be no competition amongst optometrists, ophthalmologists, developmental optometrists, or Neuro-optometrists when it comes to the health of a person period. They should be working as a team to do what’s best for the person and not what’s best for their wallet!
I have to go back in history for a moment. For four years I was under a lot of stress with my son, taking to therapies, doctor’s visits, visits to KKI, JHUMC, school, IEPs, meltdowns, diagnosis of moderate autism, sensory issues, and learning about him – when in fact – I also learned about myself too! I, too, have Aspergers which is on the ASD. I always wondered why I was different, didn’t get social cues, and didn’t have many friends because I spoke the truth for the most part. Didn’t realize that was not acceptable! I had recently gone back to work after an 8 yr. hiatus to take care of my children at that time. It was a lot to soak in and it took a long time for our family to adjust to the fact mom doesn’t have a lot of time to do the things she used to. Going through what I have gone through has made me realize who my real friends are as they have remained with me, a marriage surviving something like this takes over 100% dedication on both parties. It certainly is not easy! Life can be unkind and unjust but you have to get through the weeds before you can see the beautiful gardens that lie ahead of you. Therefore, I truly believe that had the Pediatric Ophthalmologist referred us to a Vision Therapist to begin with, my son would not have gone through what he has endured the past 7 years! All of it could have been avoided if he would have said; I am referring you to a vision therapist. But he didn’t. I do NOT want another parent to have to go through what we have been through –losing 5 yrs of developmental years and child years that one cannot get back. It absolutely breaks my heart when I see other folks who are in the same exact situation as we were and are not willing to take advice but we all live and learn. Most folks are so concerned about the eyes aligning right that they don’t realize the eyes have to talk to each other to make the brain function properly. This is why I am so passionate about Vision Therapy and spreading the word and to make it easier for folks to get financial assistance – whether it be insurance accepted or otherwise and educating the public. We want to educate the schools about the poor vision screenings they do (they don’t tell you anything), the teachers, doctor’s, therapists, parents. Vision Therapy is something that has the potential to help hundreds of thousands of people if they were just educated on the subject. I truly believe having Asperger’s has afforded me the opportunity to be truthful and wanting to take Vision Therapy to the next level. I feel that why should Vision Therapy not be accepted and why can’t/won’t insurance companies not cover the expenses? The answer has to make sense to me and if I am not satisfied, I just keep going. That is just the way that I am. Therefore, the Vision Therapy Parents Unite Facebook Group was formed. Kelly Snedden and I, I believe, commented on a post on another site and we just commented back and forth to each other and we took the conversation off-line and hence….Kelly had the words of Vision Therapy Parents Unite and I had an “a ha” moment and said “that’s it!” She said what? I said the name of the group – and the Facebook group was formed. We had the same ideas and vision for the group. One of the many purposes of Vision Therapy Parents Unite FB group is to get Vision Therapy covered by insurance companies and also for vision therapy to be recognized as a form of “therapy” such as OT, Speech, etc.
The Joshua’s Journey Facebook page was created to inform folks about my son’s life and to spread the word of vision therapy. I hope to one day write a book but that has been put on the back burner for now. I think what I am doing with VTPU will have a much more satisfying reward as it will accomplish what the book would do and faster.
The Autism Parents Unite Facebook group was created around the same time as the VTPU site. It has not grown like VTPU but I do add some good information to the page.
I continue to learn more and more each day and still have leaps and bounds to go. The people in the VTPU group make it so wonderful to be a part of this. We all have stories to tell and the more we tell the more we spread and the more we will be heard. I do believe this is my calling in life and that the sky is the limit where vision therapy is concerned. We have goals and we aren’t going anywhere. I’ve had so many folks e-mail me, message me, text me, call me, facetime and Skype with me that it is unbelievable. They tell me what a great job I am doing and I can’t ask for anything more than that. I say thank you to them all as the conversations and dialogue are wonderful! I just love our group! I love helping people and the wonderful folks just make it easier.
Some closing thoughts – A special thanks to Michele for her time and effort to enlighten us all. Best of luck to her, and to Joshua, on their continued journey! 🙂