FamilyConnect: A Parent's Voice
by Scott Truax
It is that time of year again that brings both joy and boundless levels of stress. We have put together a Holiday Guide for Parents of Children Who Are Blind or Visually Impaired that will help you get through the season.
Trying to find that perfect gift for your child who is blind? On the Holiday Guide we have collected several articles with tips and specific toy ideas. For that teen or adult you should browse the holiday issue of AFB's AccessWorld® for gifts with a technological twist. We also have links to a variety of agencies that have special gifts for people who are blind such as braille cards, jewelry, and more.
Don’t let your child be a couch potato but use these ideas on sharing the holidays with your child who is visually impaired. We have just posted this article in our tips for parents on making cookies together, which is a great holiday time activity. On the other hand, a good audio described video is a nice way to spend a winter day. The American Council of the Blind maintains this list of audio described videos.
My hope is we strive for a blend of fun activities, active engagement, and creative down time as a family together.
by Scott Truax
By Felicity Dryer
Today we are posting a blog written by Felicity Dryer who is sharing her thoughts on technology.
Every parent, particularly those raising a special needs child, wants not just the best, but the very best for their child. With special needs technology advancing at such a rapid pace, the possibility of reaching and applying such progress may very well be possible.
What's Out There?
Assistive technology (AT) now offers a long list of applications that have changed the lives of children and their families forever. These advancements include braille printers, voice activated devices, audio books, and other talking technology as well as large print texts, screen readers and magnifiers (easy zoom in/zoom out tech).
Refer to your child's educational facility for their access to AT. If budget is a challenge, get involved in a fundraising program as well as raise awareness for technology on the horizon.
You Have a Say
Much legislation has been passed regarding special needs access to various tools and helpful additions. The Assistive Technology Act (ATA) is one which is intended to ensure that people with disabilities have access to assistive technology devices and services.
Contact your local government office to see what your state offers regarding your child's visually impairment. You may be surprised at the help you get from your civil servants.
It's Getting Better
Manufacturing products for a variety of physical and mental challenges often falls into the hands of free enterprise making supply and demand the ruling factor. Therefore, it may be difficult to find certain AT for visually challenged children.
Working with educators; resource platforms (organizations, social media and web/consumer sites); and word-of-mouth, you can get the latest in AT.
Hopefully as more demand continues, it brings future AT to visually impaired and blind children. Some of these even go beyond basic, practical applications such as those mentioned above and incorporate amazing tactile innovations along with some fun thrown too.
The invention of the 3D Printer has opened a whole new world for so many industries including medical, textile and yes, special needs. According to a report by Science Daily, "Using the technology, not only braille books, but also braille picture books and teaching materials can be made with greater flexibility in color, height and size."
These braille picture books offer more interesting reading as they can now include 3D models of topography, miniature furniture, fruit, and anything else to bring tactile reading to a whole new level. In addition to adding this technology to reading, it can also be used to create all sorts of crafts and models for parent/child quality time.
Audio Communication Boards
One struggle for the visually impaired is being able to participate in community boards. Whether social media or other platforms like craigslist, being able to participate can help these children increase self-esteem, dignity and a sense of belonging.
A screen reader app and braille keyboard can help join these sites. Plus, don't be afraid to search for a (or start your own) Audio-Skype Community Board.
Entertainment for visually impaired kids should be parallel with their peers. This is special needs tech which, with the use of an audio response device like VoiceOver, exercises imagination, thought formation, problem solving and more.
Some of these cost a few bucks while others are free. These games include:
- Interactive Story Apps—These are stories where a child can become leader of their clan and even crowned King. Some titles are: King Dragon Pass and Frotz
- Silly Fun—These games take away all seriousness as players run from crazy acorns in Stem Stumper or test their gesture reflexes with Zany Touch
- Classics—Voice activated chess or cards are easily found complete with tutorials and thousands of variations
- Brain Stimulators—There's even trivia, puzzles, word games and electronic casino. Look for titles like: De Steno Games, 7 Little Words and Moxie
- It Goes On—There are many other apps covering sports, music, podcasts, and more
Special needs tech keeps morphing from one benefit to the next. Stay on top of what your visually impaired child may be able to excel with. Just seeing the awe written all over their face is worth every effort.
by Susan Harper
There is such an amazing lack of information or disconnect in the general public regarding vision issues and education. I am always amazed, but I guess I shouldn't be. I find myself educating. Most of the time it is lack of understanding, rather than malice that drives the misunderstanding.
It has been a rather interesting beginning to our new homeschool year. For the first time in 3 years (we are beginning our 4th homeschool year with our visually impaired son), we took a month off in the summer with no services. I took 2 and 1/2 months off from teaching. The break was so needed by me.
We are very fortunate to have the providers we have. Even though they have not worked with a blind child before, they are more than willing to learn. We share information and articles along with suggestions. Because we are not bound by an IEP, we can adjust as the situation warrants easily and timely, usually.
The TVI and I decided last year we needed some input regarding Vinnie's expressive language issues. We have a great speech therapist, but she didn't have any suggestions. The TVI suggested another speech therapist who has some expertise working with children who are visually impaired with atypically developing speech. The TVI related she'd had good success with this therapist. But there was a glitch. She doesn't accept Maine Care (Maine's version of Medicaid.) Okay, so where do I find funding?
I read a lot of newsletters and other publications that come my way to keep up on what's new and interesting related to my children's needs. So I read in a Maine newsletter about some funding available when insurances doesn't cover, to provide for an unmet need. Well, I was sure that this was the case with our need to consult a specialist.
Of course, I went right to work and obtained an application. I asked if I needed a case manager, because the application had to be signed by a case manager. I was assured that I could sign the application. I was told to send a cover letter outlining my request and an Individual Education Plan (IEP) and/or Individual Family Service Plan (IFSP), with reference related to the need. Since we homeschool, the person getting the application related that the IFSP for section 28 (a program to provide a 1:1 for children with developmental/behavioral needs) services would do. That, it turned out, was the easy part.
Then there were questions about the IFSP for section 28. Where was the Axis I and Axis II diagnosis? I was told my son wasn't entitled to the section 28 services. My head hurt at this point and you can guess my frustration was pretty high. Finally, the application person went to the director of the section 28 program and it was explained. Again, the "disconnect" and lack of knowledge about visual impairment and blindness issues.
The request for funding was followed by a series of phone calls asking for more information regarding why I need this specialized service for my son. I answered and followed up with the additional information. The person I was working with had no knowledge about services for a child who was visually impaired, evaluations, nor was there a clear understanding regarding special education regulations. Finally, I asked for a written list of information in writing regarding what was lacking in my application. At this point I was told that if I had a case manager (I worked for 7 years as a case manager, but things do change), that person would know about these things I was asking. Anyway, after again following up I believed we (because by this time, my TVI had also written a supporting letter as well as the speech consultant with specifics about what, how, when, where, and how much the service would cost) had submitted everything. We were led to believe that the funding would be approved. That was August and September. The "disconnect" in understanding the needs and what was really required continued.
At the end of September, the request was denied because the IFSP had expired 3 days before. I could have gone back and gotten it renewed, but it is coming into flu season and the boys can't go to the program because of communicable stuff and it started early this year. We have a doctor's letter so the section 28 spot stay open. I decided not to go through all the hassle, because I was sure there would be yet another request. We were not communicating well at all and continued with our "disconnect." Actually when all was finished, I got an email saying I was "not collaborative." I'm thinking she meant I wasn't very cooperative and there is no appeal process. "HUH!"
I did follow up and request a sample of what would be acceptable with regard to an IEP or IFSP. I was told that the service would have to be written into the plan, stating the need. Our group talked. There is no way that anyone is going to put something like that in an IEP or IFSP because they then become responsible. Again that "disconnect."
So we've all learned something as well as a new term, "Not Collaborative." Yes, I'm smiling. It makes a good story. It also reminds me again, why we homeschool.
"And now for the rest of the story," as Paul Harvey used to say. I went back to the state of adoption and asked if they could help. I talked with a really nice lady who also had twins who were premature. She said if I sent her the material, she’d run it by the review committee that week. I put my husband to work scanning and off it went. I got an email 2 days later with my funding request approved. If we find this helpful and need additional services, we can reapply. A happy ending after the "disconnect" and my "lack of collaboration." Best of, all Vinnie is going to get the service/consult we need to move forward.
by Scott Truax
As a celebration of October as National Disability Employment Awareness Month (NDEAM), we have launched a series of articles written for parents about issues in employment and career awareness. In the Transition to Independence section for each age group on the FamilyConnect site, the new articles explain how families can and do contribute to the work to prepare children for employment as adults.
As a final salute to NDEAM, we bring you the selections for teens who are blind or have low vision. In the previous age groups we discussed the everyday things that build skills and awareness of careers and employment. Teenagers are at the point where they can fully participate with the information and coursework made available to them through AFB's CareerConnect® web program. Families need to be aware of the activities that their children should be taking part in so they will be prepared to transition from public school into college or work.
Please follow the links here to explore the activities for teens and their families.
- Preparing Your Visually Impaired Teen for Independence
- Technology Skills for Blind Teens
- Preparing for College with Visual Impairment
- Job Exploration for Adolescents who are Blind
- Job Searching with Your Visually Impaired Teen
- Helping a Visually Impaired Teen Practice Job Interviewing
- Success at Work for Young People with Visual Impairments
We would like to thank the May and Stanley Smith charitable trust for providing the funding for this project. Be sure to check out the earlier articles in the series:
by Scott Truax
I would like to introduce Stacey Dodd as a parent who has submitted the following blog. You may follow her on her blog Minding Thomas.
I had never heard of the well-known essay 'Welcome to Holland' until it was mentioned to me via a former work colleague upon finding out how my boy was doing. It was suggested for me to read and I honestly didn't bother with it. I ended up coming across the essay through a national support network's booklet, 'Stories to tell.' I read it and I could relate to it for sure. I wondered about that last sentence and how we come to a certain point along this journey where we realize that we have to make a decision as to whether or not we want to stop mourning the loss of the dreams we had or hold onto it. I think that this is all very well to say but it's not that easy is it?
It never really leaves you. The feeling of loss. The eternal grief. The worry you feel when you fear to nod off to sleep at night. Will my boy have a seizure while I sleep? Will I hear him on the monitor? Will he walk? Talk? No one can answer this, not even an MRI or a neurologist. Just wait and see they say. Those words cut deep. Deep where the pain of loss and grief reside. Those words are so easy for them to say. They have to say it because what else can they really say? This is probably why I can't let go. Because I'm waiting to see? Wait and see what exactly? What my son can or can't do? I think there comes a point where you do accept that you have no idea what the future is anymore but it doesn't ever mean it's okay. It just means, for now, I'll get through today, and the next day, heck or maybe the next hour. Never week by week.
Yes, you go through ups and downs, but more often so when you are a special needs parent. You become numb with grief having been through the stages of grief over and over. You may spend more time at certain stages of grief, and that I believe depends on you as an individual. We all cope in our own ways. If someone asked me how I've coped, I would just say, I got on with it. We do this simply because we have to. We have no other choice. We have to keep pushing on for the sake of our son. We need to be strong for him. I have to be strong for him. He depends on me. I have to keep it together while I can. I can cry later. Sometimes, with all the medical visits, hopsital stays, new treatments or diagnoses you become like a deer in the headlights. Stunned with disbelief or something like that. Some days, you're wired enough to be on the ready with a trillion questions and energy to research every side effect of a new drug. You give up trying to remember names of nurses, simply because there are so many that you end up meeting. It's overwhelming. I could go on and on.
So, yes, as the essay says, you end up somewhere unexpected. You did not plan to be there. You have nowhere to turn, maybe to find the exit, a way out. Maybe press 'rewind'. No. You have no choice. You stay where you're put and you get on with it the best way you know how which is pretty much anyway you like. It is a lonely place, especially in the beginning when you really need the guidance. Somehow, you find your way about. You do meet some lovely people who help you along your way. You become an ace with the language of special needs. Eventually you find a way to forget what the future was supposed to look like once upon a time and you focus on the 'cans'. What can I do to help my son? Where can I seek help or guidance? How can I get through a difficult day? What can I do to help others? How can I meet others? What can my son do that I can celebrate? What can I do to make a difference?
Can you do the can can?
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