Homeschooling and Special Needs kids

[Mama Bear]

(I'm posting here because I'm thinking of this as being sort of opposite to the Special Needs Board, though I could be waaaay off there. It's late and I need sleep and I'm feeling fairly inarticulate...)

 

Is there anyone who homeschools with a fairly high-needs kiddo in the mix? I mean this type of scenario: Q, at 2, does not feed himself. He is mostly non-verbal, but does vocalize. He has issues with tone, meaning sitting straight up while also holding his head erect is quite difficult for him. He's not ambulatory, but seems to want help getting into trouble (since he can't initiate it himself). There are many things he does enjoy and he's fun to be and play with (very giggly and cheery overall), but he's only barely able to entertain himself and needs most often to be included by one of us -- carried to/from, positioned, etc. His favorite things in the day include Latin chants, recitation of poetry (FLL), having the kids read whatever they're doing for schoolwork aloud, holding pens and "coloring" (his face) at the table while the kids are working, etc. Basically, being a member of the group really floats his boat -- people are his thing, with de facto adrenaline junkie being close behind.

 

The big kids have been gone (with their dad, and etc.) for a week. This has been somewhat surreal -- it's obvious that Q misses them terribly, looking for them and getting all excited when someone mentions the kids, or babbling to them on the phone for a couple of minutes. He's harder to keep busy with them gone and he's been sick, so it's been different than it would have been had he been well...

 

I guess I'm wondering how I actually manage to get anything else done when the kids are here? I mean, this week has been lots of sorting, putting away, getting rid of trash, deep cleaning, things that I'm not usually doing when they're here, but Q needing extra care/time has somewhat complicated my efforts.

 

As I typed out the above, I'm realizing that the descriptions emphasize difficulty, when our daily experiences here are far from that. We're not flailing or anything. Most of the time we do quite nicely, especially considering what must daily be accomplished here.

 

I'm just thinking about the particulars of our situation as being somewhat different from those of folks homeschooling only neurotypical kids. Sometimes hearing others' stories provides a fresh perspective. Is anyone else doing something like this? Any thoughts you'd like to share? Favorite stories? Activities? Ways to stay sane? ;)

 

Thanks, folks.

[JFSinIL]

You might also ask this on whatever yahoogroup exists for parents of kids with Q's disability - I am on a group for parents of kids with autism and often a parent will be homeschooling one or more kids with and without autism - so I bet you will find other homeschool moms on a yahoogroups, too.

 

So far it sounds as if what you are doing is working. When Q is older and needs more actual 1:1 homeschooling himself - ah - that is when it can get harder. I did homeschool my son with autism one year - and his needs dominated the school table as he would NOT do any work independently. His two older (in terms of schoolwork ONLY - Joe is actually my oldest kid by 30 seconds) were able to do a lot of their work on their own. My youngest spent a lot of time with Blue and Steve :-(

[kalanamak]

I knew a woman with a similar situation, but plus tube feedings and an ostmy. I asked her frankly about how she did it when this child (now 17) was young and she told me she had a wheeled chair kiddo spent the day in, well positioned, and she simply took kiddo with her everywhere...laundry room, out to get the mail, etc. and didn't assume she was "spoiling" the child. Later, when the girl's brain was more developed, she got more acceptance of being left to her own devices for a little while. In the meantime, mom said she got very good at getting everything she needed from a room for the next 2 hours and making one track across the house, instead of back and forth.

 

Could you record your family reading stories? A tactile area? Have you, in crucial situations tried anything as modern as Thomas the Tank Engine?

[Mama Bear]

I've only been involved in Polymicrogyria groups thus far, which is a very rare condition. No one has volunteered any info about homeschooling, but then there are less than a hundred families involved, even including caregivers who read and post there. I'm thinking maybe if I look at some other groups I'll find people in similar circumstances.

 

Thanks! :)

[Mama Bear]

Part of our problem is that the house is a split level with long steep stairs down to a fairly chilly basement. We'd do more downstairs with the swing and the space if it were warmer and if it weren't a challenge just to get little guy down there and comfy. Laundry room and G's "chem lab" are down there too, so it would be nice to be able to take advantage of that arrangement.

 

Q likes to watch Baby Einstein, and whatever his sisters are enjoying on PBS. It's not frequent, but we do that sometimes and he likes it. Now I'm thinking about Thomas DVDs... He has a "little room" that is sort of a cubicle with sensory stuff in it -- ball with bells, chimes to grab, different textures. He has toys that he can push buttons to make go, etc.

 

I think one of the problems is that while he shows signs of being sort of on target emotionally for a 2 yr old, if you can't initiate much for yourself, how do you function? Right now, therapies are kind of focusing on "unlocking" Q so he can interface with the world.

 

I could use a manual on how this is supposed to work. :)

 

Thanks very much, ma'am.

[Claire]

Not doing this myself, but I think in that situation I would need a "mother's helper" to keep myself sane. It could be a younger teen for a couple of hours a day. This might make it easier to spend an hour in the downstairs swing space, etc. (Space heater to make it warmer for short periods of time?)

[HomeOnTheRanch]

Here's what we'll do: I'll put A in the teleporter machine and send her to your house. She'll spend the next few hours entertaining Q while you clean out closets. When you are good and ready for a nap, put them both in your machine and send them here. They will play until supper time at which time she will escort him back up there. We will then repeat the process every day. Sound good? What? Your machine hasn't been installed yet? :glare: Bummer.

 

Sorry. No real help, but I wanted you to know prayers are being sent all around.

 

:grouphug:

[LNC]

My 13yo is profoundly disabled - o2, feeding pump, colostomy, bladder catheter etc... He is blind and can't roll over, but he smiles when we interact with him. He loves "company."

 

We built a house last year in our same neighborhood. We chose a floorplan with his room right next to the kitchen. His full bath is fully accessible and next to his bedroom. We homeschool in the dining room right off the kitchen. So, that "wing" of our house is very convenient for me to care for my son, my home and teach. My younger children do their oral reading in his room - we have a nice soft chair and a half in there. We do read a louds in there often. He has music playing all of the time that he enjoys. We have hardwoods throughout the downstairs so ideally we can push him around in his wheelchair - but he's too uncomfortable sitting up very much.

 

When my 10yo with mild mr and pdd-nos comes home from school at 2pm he spends about 2 hours in my 13yo's room "acting out" our Sunday morning worship with our worship cds. He pretends he's the worship leader with elaborate prayers etc. Quite the wonderful autistic quirk and it is the highlight of my 13yo son's day!

 

It would be undoable to care for him if his equipment and my school stuff were far apart though. I would recommend putting thought into getting that as close together as possible if that makes sense.

[Mama Bear]

Not doing this myself, but I think in that situation I would need a "mother's helper" to keep myself sane. It could be a younger teen for a couple of hours a day. This might make it easier to spend an hour in the downstairs swing space, etc. (Space heater to make it warmer for short periods of time?)

 

Hmmm. Now I'm thinking about a friend's daughter, actually. I'll have to look into that. Thanks. :)

[Mama Bear]

Can you put Q into a back pack so he can be with you but you can still get things done.

 

I did that last year, but he's so long in it and yet still kinda floppy, that it's pretty difficult.

 

It sounds like this is a great week to do the deep cleaning and purging. Do the big kids spend a week or two with their Dad once or twice a year? This could just always be your "clean out" time.

 

The visits are somewhat irregular -- there was a year between Christmases, then they left last Mon. for a week. Um, well, it was supposed to be a week, but they missed the plane and so won't be back until tomorrow night. (Sniff.)

 

Anyhoo, this is great "clean out" time and I'm glad to have it, or I'm pretending that I am. ;) But Q notices that the kids are gone and looks for them so there's just lots of upheaval involved.

 

Thanks for your kind words, madame.

[Mama Bear]

Here's what we'll do: I'll put A in the teleporter machine and send her to your house. She'll spend the next few hours entertaining Q while you clean out closets. When you are good and ready for a nap, put them both in your machine and send them here. They will play until supper time at which time she will escort him back up there. We will then repeat the process every day. Sound good? What? Your machine hasn't been installed yet? :glare: Bummer.

 

Sorry. No real help, but I wanted you to know prayers are being sent all around.

 

:grouphug:

 

 

Hee! I was just actually listening to the radio while driving home from OT this morning and the program host said that he was going to have a physicist on to explain how teleportation is not only possible, but likely!

 

So as soon as we install the devices, you're on. :D

[Mama Bear]

When my 10yo with mild mr and pdd-nos comes home from school at 2pm he spends about 2 hours in my 13yo's room "acting out" our Sunday morning worship with our worship cds. He pretends he's the worship leader with elaborate prayers etc. Quite the wonderful autistic quirk and it is the highlight of my 13yo son's day!

 

It would be undoable to care for him if his equipment and my school stuff were far apart though. I would recommend putting thought into getting that as close together as possible if that makes sense.

 

Oh, my! Your setup sounds lovely. It is just so incredible to have good tools of all sizes and shapes, isn't it? I love the description you give of your floorplan. I'm thinking I should go sketch some stuff while I'm thinking about it. And your kidlets sound darling. Funny how the quirks often answer each other.

 

There's no telling how far Q will go, but at this point it's pretty safe to say that having a wet room as a bathroom, having everything on one level, having larger, more wheelchair friendly rooms, and perhaps a Hoyer lift and specialized bed will all be good things. Right now, we're still working on support issues and the kids and I are still living with my folks, bless them. I can't tell you how welcome a miracle would be right about now. :)

 

Thank you so much for posting. It's so helpful to me just to hear someone else's story/journey. Mind if I pester you more later? ;)

[Pajama Mama]

I have 2 boys with "issues". Ds10 has Asperger's/ADHD. Ds8 is severely disabled both mentally & physically(g-tube, CP, visual problems, epilepsy,etc) Typically, he goes to school during the day. However, when he's ill(which is frequently) ds8 is home with us. I hs my 2 other kids. Last summer, we had his bedroom built onto the first floor. So his room is next to the living room now. If he's tired I can put him in there so he can rest. If he's home because his school had the day off then he hangs with us. I put him in his chair and he stays in the school room(dining room). For read alouds, I'll cuddle with him on the couch. If we are doing an art project, I help him with hand over hand assistance. I usually try to put him in his gait trainer each day he's off from school(not while sick). We'll put on classical music and his sibs try and coax him to walk. He's a very happy & social child. He seems to enjoy participating in whatever we are doing.

 

When ds8 was younger, he was ill too much to be in a classroom. So, he remained at home and therapists from the school district would come and work with him. My other 2 were younger so I can't imagine trying to do that now while homeschooling. The therapists would involve my other children because it was clear that ds loved them.

 

I don't know if it's a good thing or not but my other 2 kids can assist me alot. Ds10 knows how to set up the feeding pump machine. Both know where the Diastat is in case of prolonged seizure. And you should see how fast they both hook or unhook their brother's wheelchair while in the van. They are like a pit crew at the Indy 500-lol.

 

I think having a special needs child at home should not deter you from homeschooling. Just include your child as much as possible-RAs, art, music, etc. As LNC mentioned, it's important that you are all situated close to Q. This will make it easier so you aren't lugging stuff from A to B all of the time.

[Mama Bear]

LNC -- Thank you so much for sharing your experience. I'm going to need to make sure that, whenever we have our own place, we're on one floor and situated differently.

 

Q's still nursing and sleeps in a crib in my room. I'm going to have to convert it because getting him in and out is tough, as I'm sure you can imagine. We're on the verge of coordinating new things for new stages and it's both exciting and overwhelming.

 

Thank you again for your post -- y'all are indeed providing a new way of thinking about this. It means a lot.

[Alexandra]

I would imagine a teenaged girl might really love this sort of job.

 

Not doing this myself, but I think in that situation I would need a "mother's helper" to keep myself sane. It could be a younger teen for a couple of hours a day. This might make it easier to spend an hour in the downstairs swing space, etc. (Space heater to make it warmer for short periods of time?)