Looking for suggestions/insight...

[Mama Bear]

I've been frantically busy and have rarely made it to the boards over the past few months, so I'll start with info/background.

 

I'm flying solo with 5. My eldest is bright and reads a ton, has OT for ADHD/Aspie-esque features adn math tutoring because he learns best when he's one on one (focusing). My second is the "cruise director" -- organizing everyone and everything, she's bright but sometimes (often?) resistant to following through with school (about average in this, I'm guessing). My third is a bit behind in her reading, finds math easy and fascinating, loves English, is a trooper. My fourth, also a trooper, loves everything about school, is about 6mos-1 yr ahead in her curriculum, generally hard-working and fearless. My littlest guy (deep breath) has apraxia/dyspraxia, dysphagia, CP type issues, perhaps seizures (time for another EEG), Cortical Visual Impairment and Intermittent Exotropia, Reactive Airway Disease (NEBs when he gets sick), does not sit or stand for more than a few seconds at a time, will soon have a walker/gait trainer, planning on a feeding chair (pureed diet, no g-tube), and getting ready to potty train (gulp) at three. The big kids play piano and violin, little guy loves music but tolerates minimal actual violin practice (four at a time is LOUD). Little guy has one hour of Speech, one hour of OT, two hours of PT every week. He's eligible for SpEd preschool here, but I haven't visited the classroom yet because I'm trying to fly under the radar of flu and misc bugs (weight loss and neuro symptoms result). I have met the therapy team with the SD and they're great, but he's eligible for only about an hour and 20 minutes total per week.

 

So that's pretty much life here. Crazy busy, as you'd imagine, but rewarding and moving right along. Mostly. :D Last Tuesday, an evaluation with a new Speech Path person to address needs for Assistive/Augmentative communication equipment revealed that he's identifying colors with near 100% accuracy and chooses A's and B's correctly when offered two letters to pick from (we ran out of time to do any more). He loves the 10-15 min/wk he gets on the computer during OT and has made great progress with head switches and a touch screen. He tracks moving objects well and is obviously very involved/invested in stories/games/songs (color matching, following directions).

 

So. I'm a little surprised by all this, but have thought that he's getting ready for reading, just by little things that are familiar to me from my other kids: loves stories, turns pages (closed fist, mostly), tries to lurch at the TV when his sisters watch Word World, seems to be paying a different kind of attn to ABC books/dvds. I've been thinking for awhile about how to teach a kid who can't just *tell* me what he knows. I've assumed that I'll be reading a TON to him (his sibs will too) and that the minimum for him will be yearly completion of the "What Your _____-er Should Know" series. But watching this, what he did for a complete stranger (family/familiar therapists usually get more out of him), I'm thinking he may need more as time wears on.

 

I've been thinking about that preschool class because I'd love to have a few hours/week with a clearer focus for the bigger kids who are getting ready to write mondo papers, do algebra, and generally take on thigns that require some chunking of my time. The younger girls can still do school in 1.5-3 hours/day and that kind of time isn't too difficult to come up with. I'm not really considering putting anyone in school (except maybe preschool), though I evaluate that option a few times/yr in my head. :D

 

The details w/ preschool can be worked out for sure, but... (whispering) I'm tired. The house is too often a wreck. We live with my darling parents, whom we love to death, but parenting under the watchful gaze of one's own parents can be, um, challenging. The house is full and the exciting new equipment will stuff it further toward the gills. The current support amt. does not allow me to move into anything other than a very small two bed apartment with stairs (would not accomodate little guy's chair or our backs). I love the things we're doing (almost all of them), but it adds up to a LOT to do, you know?

 

I need some help, I think. Little guy can take up to three hours a day for food prep and feeding. He needs working with too, because as much as he gets into certain dvds/PBS programs, he ought not veg. He's not ambulatory (yet) and can't reorganize himself into new activities when he's bored. I have a call in to the agency that's supposed to evaluate and provide personal care hours. He has major sleep issues (went down at three one night this week) which are an artifact of his neuro diagnosis and will not be going away. He takes meds for this and probably always will, so that might equal some respite care time, but the funding is sparse and shrinking.

 

Maybe I'm just in the place where I'm too tired to think my way out of this?

 

We'll be going for a nice walk later, and I'm hoping it'll help clear my head. Any thoughts are much appreciated.

Edited March 21, 2009 by Mama Bear
add details/clarity

[Mom22ns]

:grouphug:

I hope the walk helped. I would definitely consider the preschool option. It doesn't mean you are sending him off to school on any kind of permanent basis. My ds went to ECSE preschool and made huge strides there. They had a great student/teacher ratio and the OT and ST were in the classroom quite a bit of the time too. They would officially be there to work with one child, but would work with all those interacting with that child too. It was really a great environment. We did 4 hours/day 4 days/week. That would give you a chance to focus on the other kids and have some energy left for your little one when he gets home.

 

If you don't like it, you don't have to keep sending him. It is always your choice. Don't be afraid to try. Just because you are a homeschooler doesn't mean you can't take advantage of all the resources around you. Do what is right for your family and don't feel bad about it!

[Ottakee]

YOu are one busy mom.

 

If he can handle preschool medically (without getting sick), it might be a great option for him to get his therapies in an organized fashion with therapist who do a lot of kids like him and also give you a break. I sent both of my girls for 1 semester of preschool and they LOVED it. They were both in program for kids with special needs. The bus ride was a HUGE hit for them as they had a driver and aide and played lots of kids songs, sang, played i-spy, etc.---basically kept the kids engaged and happy.

 

It can be stressful on the other kids having a sibling with special needs so some time away to be able to do a few things without him would be nice as well----as much as I am sure they love him.

 

I would see if he qualifies for nursing care or even respite services. The break it provides is WONDERFUL. All 3 of mine get some respite and it really helps me keep my sanity.

 

Can you have them do the EEG while they do a sleep study for him? That way they can figure out both issues at the same time--well, at least tell you what is going on, fixing them is another thing :glare:

[Mama Bear]

Maybe we'll try two mornings a week, just to start and familiarize him with the classroom and the staff with him. Our schedule is so durned full I've had a hard time figuring out transport (he's not really able/ready for the bus yet).

 

I'll push more about the respite and personal care time too. His neurologist hasn't thought a sleep study would be necessary as of yet, but I'll ask when we see him again. He startles repetitively as he's dropping off (without meds) and then will just give up trying to sleep. Since starting the benzodiazipine class of meds, he's more regular about naps, even though he only gets one dose, at bedtime. It's almost as if getting better sleep more often at night has allowed him to fall asleep better for naps too. Still, it seems a little unusual that a 3yo would sleep between 6 and 9 hours out of 24, no?

 

Ottakee -- it's nice to "see" you. I think of you from time to time. :)

 

I'll check in later and see if anyone has added anything -- thoughts welcome!

[LizzyBee]

I don't have any suggestions, but it's great to hear from you. I can't believe your baby is 3 already!

[Mom22ns]

You might be surprised about the "bus". Our ECSE bus was driven by the sweetest guy and it had this older woman as an aide. They sang songs and my son often fell asleep on the way home. The kids all have to be in car seats, so it is much more like a car ride than a bus ride. It was the most gentle bus ride ever. I had a baby at home when my son started, the bus was a lifesaver!

 

As far as sleep, my son slept 8 out of ever 24 hours (including naps) for years. Melatonin (suggested by pediatric neurologist) helped, but he was never a big sleeper. He went up to 9-10 hours for a couple of years and is now back to 8 hrs. :001_smile:

[ClassicMom]

Mamma Bear,

 

There are quite a few of us with more than one challenging child and it is a rough road but can be done.

 

All but one of my children are facing some sort of issue from mild (mild ADD) to severe (severe CP,MR,seizure disorder, developmental delay).

 

Like you, in the beginning, I tried to do it all. Eventually, the stress of having my severely challenging child home all day became too much. All of his appointments, the therapy I had to do at home with him, his feedings and his comfort needs (he wants to be held or sat with or comforted all day) was just too much with homeschooling the others. And this was before our Aspie son was even born.

 

We eventually put him into the public school system. Luckily, he has been very small and we were able to keep him in the elementary school until he was 14. We started with a couple of hours at a time and then moved to a couple of days at a time. I too was concerned with his immune system, but believe it or not, this has improved his system and he is one of the healthiest children in our home. He received the flu and pnemonia shot every year. It really gives me a break from his care throughout the day and then I can focus on giving him the love he needs when he gets home.

He always came home with the smell of perfume in his hair and lipstick on his cheek and I knew that he was getting plenty of love from his teachers. They have all kept in touch over the years.

 

Unfortunately, I'd have to say that Jr. High isn't going as great. I'm going to see how it goes next year and if it's not better, I'll have to bring him home. They rarely get him out of his wheelchair and now that he can use a gait trainer, they haven't used one once. They won't get him a communication device and the elementary school did all of the work last year. I think his teacher has given up. Maybe. We'll see. One year at a time.

 

They do amazing things though for preschool and elementary school and may get your son to do things that you may not have thought possible.

Plus, you get the much needed time to teach your other children without the constant interruption. Then when he gets home, you can give him love and snuggle time. :001_smile:

 

I wish you much luck in your decision. No matter what you do, it will not be an easy decision.