homeschooling a multiply handicapped child?

[lisasutherland]

I am a homeschooling mom of 8. Our oldest is 20 and attending New Saint Andrews. I classically educate 2 high schoolers, 1 middle schooler, and 2 elementary age students. We also have a preschooler, and a 9 month old baby. Our baby, Helena, has CHARGE syndrome...she is legally blind, hearing impaired, receives all her food through a g-tube, and has very low muscle tone. At her second IFSP for ECI we were required to discuss transition at age 3. As far as I can tell, therapy (OT, VT, PT, ST) is only available through the school system once we transition out of the ECI homebased program. This is all so new to me, that I am not even sure how to find resources to research our options.

Although I've been homeschooling for 15 plus years now, I have never met anyone homeschooling a handicapped child. I began with a very determined 'we will homeschool this child just like all the others' attitude and I enrolled in a masters level course working toward certification as a teacher of the blind and visually impaired. I am working my way through a 700 page book on pre-feeding skills. We only just learned of Helena's hearing loss last week and as the areas that I must research multiply, I am beginning to wonder if I am equal to the task.

I am not even certain exactly what my questions are...but when I saw this forum, and your education and personal experience, I felt hopeful. I suppose I am really looking for resources and for contact with others who have walked a similar path.

Thanks,
Lisa

[cherylswope]

Hi, Lisa.
Some good news:

1) Your baby is only 9 months old, yet you have already identified needs, navigated the maze of services, and found help for her – no small tasks!
2) If you want more options than the public school's program, you may be able to find them.
3) You will not need to do this alone.

A few good basic resources:
--www.nathhan.com –
On this site & in this organization, you'll find homeschooling families with many multiply and severely handicapped children, including visual/hearing/physical impairments.

They offer tips and encouragement for teaching your child at home, incorporating therapies into family life, and helping your child become a contributing member of the family despite his challenges. If you click on Articles, you'll see a few on specific impairments. Back issues of the print magazine may be helpful too.

I think you will discover great encouragement here, if only for their families' stories.

--Children With Visual Impairments: A Guide for Parents by M. Cay Holbrook (Sep 20, 2006)
--Your Child's Hearing Loss: A Guide for Parents by Debby Waldman and Jackson Roush (Nov 1, 2009)

With your research, you may already know the information contained in the above two books, but this “A Guide for Parents” series can also offer some encouragement.

About your options at age 3:

The ECI folks want you to begin making decisions now. For this reason, I would suggest contacting therapists at a children's hospital or pediatric specialty center to determine your options. You may be able to obtain good therapies privately, yet covered by your insurance. This would allow you to retain control over the therapies, your own home schooling (if you choose this direction), and your family's schedule.

We sought private therapies at a Christian children's hospital when our twins were 18 months old. They received PT, OT, Speech, Language, and medical care all in the same location. For us, everything has been covered by insurance. Whenever I requested “homework” so the children could make greater progress in those early years, they were happy to provide this for us. We homeschooled from the beginning. When our twins were about age 6, all of the therapy became home-based, with regular – sometimes annual – visits for consultations, suggestions, and evaluations by the therapists.

To this day, with our twins now age 17, we integrate PT, OT, Speech, Language into our children's home schooling. My children continue to visit the neurologist and other physicians through this children's hospital, as they can do this through age 21. When my daughter has needed to stay overnight for testing or treatment, this hospital has all of her records. A beautiful “bonus” is the prayer over the intercom every morning, the cross on the wall, and the picture of Jesus with the little children in the exam rooms.

I would recommend beginning with something like this, even if you do not live in a large city. Our children's hospital is an hour away, but over the years it has been well worth the drive. We use “portable classical education” for such trips, with resources like Memoria Press' Lingua Angelica CD's to listen to beautiful songs sung in Latin along the way. Even the long waits in the waiting room can be productive. Ours was not a unique approach. Another homeschooling family brought their entire crew and set up textbooks on laps for every doctor's visit. Their youngest little guy had Down Syndrome.

As for the 700-page book on pre-feeding, you will surely need help with the physical challenges you face! Could your older children, other homeschooling teens with an interest in nursing, church members, or family members help you? After you learn what needs to be accomplished & can teach others, perhaps you could institute a rotating system.

We had help in the early years. When mine were under 3, a single friend who loved children came to our house most days after work. She worked with the twins in our backyard while I made dinner. My son with some cerebral palsy had hypotonia – low muscle tone – and needed to be pushed to run, walk, move. Christy made it fun for him. “Wanna fly?” she'd say, and he approached her with his little walker. When he reached her, Christy swung him in the air to make him “fly.” We could not pay her, but she enjoyed the hour or so, in part because it was so different from her office job. My dad came over to help too. He made PT fun. He created, “Push the gas pedal to make the car go VROOOOM,” when Michael needed to move his ankle forward in otherwise tedious and repetitive PT exercises. You can be encouraged that no one would be equal to the task alone, but surely others will enjoy helping.

I'll close, as I need to tend to my own daughter's needs at the moment. Just wanted to give you a few ideas as a starting point. It sounds to me like you have already learned and accomplished quite a bit in your daughter's short life so far.

If you have further questions, please ask. Others may have additional suggestions for you.
Cheryl

[lisasutherland]

Thanks

Thanks so much, Cheryl, for the gift of your time. You encouraged me greatly. I am looking forward to looking at the nathhan website and learning from others who are further down this path than I.

Just last week I requested and received a referral for feeding therapy through the hospital where Helena was born--I don't know why it didn't occur to me that we might be able to do the same with her other therapies as she grows older. It gives me hope to know we may be able to provide her therapy in the future. Our hospital is two hours away so I had often been leaving some combination of children at home with one older girl while taking the others with me, a solution that wasn't working well. I look forward to trying some van school this fall.

As for help, I have been leaning hard (maybe too hard) on my older children (all girls). I need to learn to accept offers of help from our church family...easier when we were in crises, harder for the long haul.
Thanks again,
Lisa

[CelticaDea]

my younger daughter is currently in the early on program for speech and some mild sensory issues (ST & OT). she is currently being tested to qualify for special Ed. As she is only 2, these services will still be at home for awhile but when she's three, she'd transition to the physical school.

In our state, Michigan, it seems that you can combine homeschooling with your special Ed services. we have two "ways" to homeschool here. 1. don't register with the school district and get no school perks (my word choice) or 2. register with the school district as a homeschooler and have access to the programs. registering requires that the parent be "qualified as a teacher" but that just means a bachelors degree or you can claim a religious exemption.(I think there may be other ways but I have a degree so I didn't really study that part.)

check with your state and/or school district because you may be able to combine homeschool with school based special Ed services. I've read of others who've made this work and this is the plan I hope to make work for her when the time comes. anyway, this may be a usable route if you can't get coverage for private programs.

[SaintJude7]

option

The school reps here (Texas) kept leading us to believe that services were all or nothing. You were in school and getting therapy or out of the system completely. When I decided to homeschool my son anyway, then they suddenly gave us information that we would still be eligible for therapy and tutoring outside of the school. The services are provided at a district building. Basically this allows the school to still receive federal funding for your child.
My son attended wonderful public school programs from the time he was 2 1/2 to 12. These schools welcomed parental input and observation, and he had the same devoted teachers from K through 5th grade. But the middle school was not a good fit for him, so we brought him home. We are trying to decide whether to continue speech therapy, as he tends to acquire the skills he needs better in a home setting than in the therapy sessions. As a toddler and preschooler, his speech and occupational therapy were received both at school and through private providers covered at 80% under our health insurance.
You have to look at each program individually and see if it fits your needs and if you can trust those people with a child that can not tell you what is going on at school.