FamilyConnect: A Parent's Voice
by Scott Truax
We're pleased to host a second blog post from Susan Harper, who has been home schooling for 22 years.
by Susan Harper
The joys of home schooling are the flexibility to work schedules around whatever. Today, my son is sick for the third day. He is down on the couch, never a good sign. This bug has gone through our entire household, one person at a time. I had to cancel OT and O&M this week because Vinnie is sick. He is rarely sick because he doesn't bring home whatever is circulating at public school. That too is a benefit of home schooling. However, his older sister started college and brought home this lovely viral thing and it decided to stay.
I am using this unexpected block of time to share with you some things about home schooling. If you have questions about what we do or how we do it, or how we went about it, please, feel free to ask!
Education starts from the time a child is born. Everything you do, as a parent, is a learning experience. Make the most of it and enjoy playing with your child. Play is the work of pre-school children, blind or sighted. Education is a lifelong task! Educators will tell you those first few years are critical. Parents are a child's first teacher. So, I guess we are pretty important!
Literacy starts with reading to your child. Just because he/she can't see, doesn't mean he/she can't enjoy listening to your voice, sitting in your lap, feeling the gentle rise and fall of you voice while you read. A child with a vision impairment or other co-occurring developmental issues needs the same things that all children do. So you provide a tactile or braille enriching environment and toys. Our first teacher of students with visual impairments, or TVI was great with this. I didn't know where to begin, so she was our lifeline and our teacher. Once I got over that hurdle of what am I going to do and how am I going to do it, I began to adapt and braille my own books and toys.
One of the best tools that I was given was a copy of the "Oregon Project" checklist. It organizes development tasks into different areas, like: motor skills, speech and language, cognitive, and adaptive. It also organizes skills/expectations by age up to 6. I used this with our TVI and the birth to 3 occupational therapist, or OT. She was part of our life for 10 years, while we worked with fostering premature babies. So we were very comfortable with each other, as well as had a lot of respect as professional providers.
I am still using the "Oregon Project" checklist to track progress and help with determining what skills and concepts we should be working on next. All of Vinnie's providers have a copy of it. Standardized testing isn't really useful for visually impaired children. Our OT uses the fine motor skill section; the speech therapist uses the speech and language section, and so on. The Oregon Project is an incredibly useful tool. You can find a copy in PDF file form here: Oregon Project Checklist (PDF).
There are a number of other assessment inventories like this one that are also helpful, this is just my favorite and the one I work with.
Do not get hung up on testing and numbers or age levels. Use the inventories as guides regarding what skills you need to be working on. I parcel these different skill areas out to OT, speech, O&M, social skills training (daycare which provides Section 28 services under behavior health paid for by Medicaid in Maine), etc., based on what I am working on and what pre-skills are important for that task. The TVI and I teach the daily lessons in reading, math, and braille. I also use a regular home school curriculum that I have been using for 22 years, as a guide and adapt it as needed.
I love working with my children! I love it when I discover something new that will help us in our journey! Home school doesn't require a teaching degree. It does require a commitment to help your child be the best they can be. You will be learning new things, revisiting old favorites, and meeting some amazing people along the way. Enjoy the journey. Relish the sense of accomplishment in small things. They add up to big things!
by Scott Truax
We are pleased to feature a FamilyConnect community member as a guest blogger today, writing about her experiences choosing to home-school a child who is blind. Susan has been a registered/licensed medical technologist for 35 years. She writes, "I finished my BS degree 15 years later in health education and worked as a social worker in adoption and therapeutic foster care. I earned my MS in Special Education 10 years ago. My husband and I have been foster/adoptive parents for 32 years, adopting 11 of our 14 children and fostering 30+ children. We have been a home school family for approximately 20 years. In my spare time, I'm a notary public and love to do weddings!"
By Susan Harper
We are a home school family. We started home schooling 22 years ago. Since we have parented lots of adopted children with a variety of issues and some with very real behavioral problems, we finally after much discussion and thought, decided to home school.
We had debated about home schooling for several years, thinking how would we manage? What would we use for books? Where would we find materials? Were we smart enough to do this? You need to know just a little about us at this point to gain a little insight into our thought process. My husband was a seminary student, working on his Master's Degree in Theology, a former music teacher, working part time as a social worker in a nursing home. I worked full time for a mental health agency supervising and supporting therapeutic foster care placements.
How would we manage? We were both working and my husband was going to school. We also had 5 children, ages pre-school, 5th grade, 6th grade and high school. The decision was made over the next summer to home school. We found a curriculum that we liked, after researching many different kinds. There are lots of different curricula out there. We found one that we thought we could manage and that would be good for this young man.
We rearranged our work schedules so we only needed daycare 3 days a week. We found a great licensed home daycare provider. She agreed to monitor the children's day and make sure their assignments got done. We corrected schoolwork on the weekends and made assignments for the next week. We started out to home school one child, but both boys wanted to be schooled together. The other twin was the class president. This took a lot of planning.
Home Schooling a Blind Child
Now, how does any of this relate to home schooling a blind child? Those children grew up and went to college and the house was quieter, with only 2 children at home. At this point my husband is a full-time pastor and I am teaching school. We decided to apply to provide foster care for special needs children. We had several placements over the ensuing years. One of those placements was two beautiful baby boys who came to us from the NICU (Neonatal Intensive Care Unit). We specialized in providing foster care to premature infants. The plan was for us to foster while an adoptive family was found.
One of the twins had hydrocephalus and was eventually shunted with a permanent shunt. The other little boy was blind, due to detached retinas from retinopathy of prematurity. After 5 surgeries involving numerous trips to New York, the surgeries did not work and he ended up with no vision. An adoptive family was found and very interested in adopting the boys. A meeting was set up. Just before the day of meeting the perspective new parents, we got a phone call from the worker. This family was expecting and 3 babies would be too much. By now the boys had been with us for 6 months and were making good progress. They were so cute. However, we were "just going to foster." We felt we were too old to adopt at 55 and 58 years old. It just wasn't in the picture. Now we were still home schooling a grade school child, a middle school child, and almost finished with a high school child, looking at college.
Long story short, there were two families who would adopt the boys into different homes out of state. We'd had these two boys for a year and a half at this point. We couldn't let them place these two little boys in separate homes. They had well-established medical care and loved each other and us. So, they stayed and were our last adoption.
When these two little guys reached pre-school age, they had to be transitioned into the public school system to continue to receive services. At this point, Services for the Blind would no longer work with our family, but would work with the school. We went through all the soul searching, agonizing feelings of inadequacies that we did when we first home schooled.
Well, by now we both had Master's Degrees. Mine was in Special Education. We did not have any experience working with a visually impaired child, let alone a blind child. How would we do this? Money was not the issue because I was working at home providing foster care and home schooling our other children. But still, how would we be able to do this? Where would we find materials and help? Services for the Blind in Connecticut told us they couldn't help us if we home schooled, they had to have an IEP once a child reached public school age. If you home schooled in Connecticut, you have no access to any public school programs. It is either public or home. What were we going to do?
We weren't happy with the services at the school. I attended transition meetings for a year before the boys started in pre-school, then almost weekly when they started. Our preferences were ignored. The staff was not trained prior to the children starting school. The TVI came once a week to train school staff and work with our son for an hour. We watched school staff and they didn't have a clue. They didn't want to hear from us how we did things to help our son succeed and learn. They wouldn't let our son have his cane in the classroom. It hung on a hook outside the door in the hallway. They would put all of his special services at the same time as the TVI came, with 4 to 5 adults working with our son. We told them that he couldn't tolerate overload.
The last straw came when I picked my son up at school and found him sitting in the wet sand box, with an aid by his side, telling him to put the sand in the bucket. The sandbox was so full of children, he couldn't move. His cane was outside the fenced-in play area, thrown in the grass. I had to hunt for it. I picked the boys up, brushed my son off (he was covered in wet sand), and we drove home. That was the day I figured I probably could do at least as well as the public school. I had learned Grade I Braille by then and had adapted toys and books.
But where was I going to find curriculum material? You know, the internet is a wonderful tool. I got on and starting typing in “free braille stuff,” etc. That was how we got started. Nothing worthwhile doing is ever easy, but we made it work!
Now we are into our 4th year home schooling a blind child, if you consider the pre-school work that we did. Our son is 7 and has a pretty good, well-rounded program with OT, PT, Speech, O&M, TVI, Sect. 28 (Center-based socialization program one afternoon a week), and 5 mornings a week with me teaching basic math, reading, and braille skills with the help of our TVI. It took us two and a half years to put this all together. We have three still in home school, and one in college. It takes a lot of work, coordination, and cooperation. It doesn't happen overnight. I have a motto I'll share. "NO SERVICES ARE BETTER THAN BAD SERVICES!" This is my mantra and I'm sticking to it! Blessings!
by Scott Truax
We are excited to introduce FamilyConnect's new look today. AFB and NAPVI have redesigned the site with input from the families who use it. On the new home page you may connect with others, jump on the message boards, read current news, follow our blogs, and more.
One of the main changes is that the top of the page a persistent navigation bar now makes it easier to discover the depth of information FamilyConnect offers. And with the home page slideshow you can quickly find out what is happening in our world.
Over on the right, within the blog area, you'll see a new blogroll—a list of some of our favorite blogs about parenting children with visual impairments. Please let us know your favorites, too. Do you have something to say and want to blog with us? Let us know—we love to have guest bloggers.
Here are some of the ways you can get involved with FamilyConnect:
- Join the community! You'll receive free, customized e-mail alerts, and much more
- Connect on our message boards—you can ask any question, and benefit from other parents' hard-won experience
- Comment on FamilyConnect's blogs, or write a guest post!
- Opt into FamilyFriends, a social networking area where you can share photos, links, status updates, and private messages
- Link to us—help other families find the support they need
- If you are able to, please consider donating to help keep FamilyConnect going
- Follow us on Facebook
What do you think of FamilyConnect's new look? Please let us know in the comments—especially if you encounter any problems! Thank you for being here for each other, and continuing to make FamilyConnect a valuable resource for parents who are raising children who are blind or visually impaired.
- News from FamilyConnect
by Susan LaVenture
We are pleased to welcome Daniel M. Callahan, Director of Children's Vision Health, to the FamilyConnect blog today to announce Jewish Guild Healthcare's new telephone support group for high school seniors who are blind or visually impaired.
Senior year for any high school student thinking about leaving home for the first time to attend college can be a time of both excitement and apprehension. For a student who is blind or visually impaired it can be a time of anxiety and even fear. Many students with visual impairments have never spent a night away from home in their lives. They've been supported by their parents, their Teachers of the Visually Impaired, their counselors and social workers, their para-professionals; all working to provide them with everything they need to succeed in school. Suddenly that carefully constructed support system is gone and they are expected to live independently.
It's going to be a new world for them. They'll have to advocate for themselves with professors who might never before have come in contact with a student with a visual impairment. They'll want to develop new friendships and fit into the social life that is such an important part of the college experience. Some students are able to handle all these challenges, graduate, and go on to successful careers. Others never seem to master those special skills and either don't graduate at all or spend many more years than is necessary getting a degree.
State agencies for the blind that sponsor students in college are coming to realize that proper preparation for a successful college experience can't be left solely to the local school districts. To their credit, they are investing in programs that provide those needed skills.
The New York State Commission for the Blind has, after a 30-year hiatus, reinstituted a mandatory Summer College Prep Program, held on a college campus, for visually impaired high school students between their junior and senior years. The Illinois Bureau of Blind Services has created a "Taste of College" program which, among other things, introduces their future college students to current college students in hopes of forming a mentoring relationship.
In support of these efforts, Jewish Guild Healthcare (formerly the Jewish Guild for the Blind), located in New York City, has instituted a national telephone support group intended for blind and visually impaired high school students from around the country who are planning to attend college next year. The group is facilitated by Daria Zawadski, a social worker who became legally blind while a freshman at Harvard University, and who then went on to graduate and to complete both a Master's Degree and a Law Degree.
The purpose of the group is to prepare students for what to expect in college. This is done through weekly telephone calls, featuring guest speakers who are current college students or successful graduates who are also blind and visually impaired. Other participants include directors of disabled student services at colleges with substantial numbers of blind students, as well as professionals with experience in preparing blind students for college.
To register for this group please call 800-915-0306 or e-mail email@example.com. We'll pick a day of the week and a time to hold the group based on the availability of the greatest number of interested seniors.
Emily's Guest Post on the AFB Blog Offers a Powerful Tribute to the Importance of Specialized ServicesPosted on 10/22/2013 at 3:52 PM
by Scott Truax
Our very own Emily is a guest blogger on the main AFB site today. She gives a wonderful response to what specialized services mean to her and her family. Read what she says, and follow her blog on FamilyConnect by signing up for email alerts.
As Emily says: "Should my son not be educated properly simply because his disability counts as 'low incidence?' Should I be OK with him sitting in a corner of a classroom because all the educational materials are inappropriate for him... but they work for everyone else? Should I be resigned to the fact that he won't learn braille, because it's too specialized and there is no one to teach it? Basically, should I allow him to be illiterate? Um, I don't think so."
What do specialized education services mean to you? If you have ever had trouble explaining why they are so necessary, check out the new handouts from AFB (available both online and as accessible PDFs for downloading). And let us know, in the comments, the impact that specialized services—or the lack thereof—have had on your child's life.