WWYD: Preparing for long term therapy

[GoVanGogh]

We went into the OT eval last fall thinking it would just be for a few months of therapy to help with penmanship issues, nothig major.

Therapist spotted a physical condition that should have been dx years ago, but had been overlooked by pediatricians. Medical specialists, at time of original dx in November, said a min of 1 year therapy - possibly two years - but to be prepared that more symptoms were likely to pop up as DS progressed through therapy.

DS was seen by two specialists last week. The main doctor said that DS's condition now warrants a stronger dx. Both doctors (independent of each other) said that DS will need physical and occupational therapy all the way through puberty to ensure that he is putting on muscle tone evenly and not losing mobility or flexibility.

DS is iin early puberty, but he will likely go through puberty at a very slow rate, per his dx. So we are looking at probably five years of therapy. :huh:

 

Currently he is doing an hour both physical and occupational therapy once a week at a facility - so four hours a week, inlcuding drive time. (Closest facility.)

He is also doing therapy four to five days a week at home.

 

Right now I feel crushed under the amount of therapy.

The therapists work togehter, as there is some overlap between what they are working on.

But - DS should have been in therapy since birth. There are just so many things that need worked on, will continue to need to be worked on. They have broken it down into smaller goals and I can see that it is helping considerably.

 

But it is all so much, on top of homeschooling. And five more years of this?

 

We live in a small home, with little space for some of the therapy equipment they have suggested.

 

I think I just need a massive purge, but am too emotional to do that right now.

 

School? I thought we would just take this year to "school light" and focus on therapy. But can't do that if we are looking at five more years of this.

 

Academically, I am not too worried about science or history, as DS self-educates easily in those areas. Likewise, he reads a lot, so literature need not be such a high priority. But he is very intense and loves learning, loves to discuss books, etc.

 

Due to penmanship struggles, he really needs to work on spelling, writing and math. But I don't want to just focus on his weaknesses, plus therapy, as that would be an awful education for him.

 

Last fall, I was told to just move him to a computer and forget about penmanship. But we have since made a huge improvement in penmanship so I hate to do that. We are trying to do part on computer so he continues to improve his typing and part via pen so he continues to improve his penmanship, but that takes so much time.

 

I am trying to find that balance between what he wants to study and what he needs to work on. He is high IQ, just has physical limitations with the output.

 

Right now he is first year of junior high. Therapy will continue into high school? He hates it at this age, can't imagine what it will be like then. But both doctors said that will be the most crucial time for therapy, as his hands and feet may tighten up.

 

If you have done therapy long term, what did you do to lighten the load? Or what did you wish you had done or could have done differently?

 

If you were facing years of therapy, what would you do?

[prairiewindmomma]

We've done it.....

 

For 1-2x week/ outside therapy: schedule half-days of school, half-days of therapy.

For 3-5x week/outside therapy: either do school first, therapy later in the afternoon or therapy first in the morning, school later. Don't break up your day!

 

Surviving it:

1. embrace your crockpot

2. bulk cook some things and keep a freezer stash of meals going

3. Sketch out a rough time plan of what academics and therapy look like---we couldn't take on other daytime activities

4. Keep granola bars in the car, utilize your cartime to either discuss things or to listen to audios

5. If you are staying for the appointment (can't run to costco, etc.), utilize that time to lesson plan or grade or for your online time

6. Move house cleaning to a set time in your schedule or it will never get done. It's Friday afternoons unless we're doing therapy 3x/week +, then it's sat am.

 

It really will become normal. I learned to plot out the costcos by the hospitals we're at regularly....for me, streamlining my errands did a lot to free up time for me. I also moved my time with friends to a weekday evening after the kids are in bed and dh is home.

 

I gave up a lot of things that were huge time sucks and not that rewarding. I also figured out what is really important to me for life enjoyment. For example, I no longer keep a big garden, but I still have lots of David Austen roses growing by my door.

[GoVanGogh]

Thank you so much for your reply. Lots to think on.

 

 

Re: Don't break up your day!

 

That has been my problem right now. They can only seem to get us in around noon-time. We can't get much school done before. We can't get much school done after. Noon-time therapy is killing us and our schedule.

And - we have actually had on-going scheduling issues...

 

We started at a large facility, associated with hospital. They put you on schedule and kept you there. But then - we were there three months and had a sub therapist half the time.

 

We then moved to a private facility and their receptionist is going to drive me over the edge. They don't hold time slots unless your insurance is paying. Our insurance isn't. So - they will book us up for a month of therapy, but then drop us because our insurance isn't paying. Then they move times on us - three times last week for one therapy session - from evening, to early morning, to ---- noon!

 

I have been in tears over therapy scheduling.

We do love the therapists where we are now - but their insurance policy stinks.

We don't have any other therapy facilities in the area.

 

 

 

Surviving it:

1. embrace your crockpot

2. bulk cook some things and keep a freezer stash of meals going

3. Sketch out a rough time plan of what academics and therapy look like---we couldn't take on other daytime activities

4. Keep granola bars in the car, utilize your cartime to either discuss things or to listen to audios

5. If you are staying for the appointment (can't run to costco, etc.), utilize that time to lesson plan or grade or for your online time

6. Move house cleaning to a set time in your schedule or it will never get done. It's Friday afternoons unless we're doing therapy 3x/week +, then it's sat am.

 

2. I do that a fair amount, but need to crank it up.

3. I try to, but that scheduling issue mentioned above...

5. I wish I could take advantage of that time! Facility isn't near sidewalks that I can go for a walk (too hot now anyway), nor is it near any shopping. So much construciton in the area, that there is no time to drive and run errands. I have tried to take stuff to work on, but waiting room is loud and crowded. Too hot to sit in car.

6. House cleaning. Need to schedule that, as it isn't getting done.

 

 

I gave up a lot of things that were huge time sucks and not that rewarding. I also figured out what is really important to me for life enjoyment. For example, I no longer keep a big garden, but I still have lots of David Austen roses growing by my door.

 

Giving up the big garden is what is killing me right now. I have collected (100-some) antique roses for 20 years and am losing them to rosette. It is terribly sad to remove them, plus I don't have time, energy or money to replant anything in their place. Gardening use to be my outlet, but now it is just too sad.

[itsheresomewhere]

Ask the therapists for a list of sports/activities that can help him. Our OT praised the swimming DS is involved in as it works the muscles and yet DS does not realize it is therapy. Have you talked to the office manager/person who is in charged of the therapy place? They might be able to help you set a regular schedule.

 

I keep tons of snacks in the car and we also pack lunches. Do you have an ipad you could load work on that he could do in the car? DS would use the time to listen to audio books or have the kindle read to him.

 

I won't give up gardening. Maybe let the roses have a wild year. I have a few David Austins with my Jackson Perkins and they seem to like it when I had to take a year off.

[GoVanGogh]

Right now they want DS to have close supervision during physical activity, as he moves like a jackrabbit to avoid using low tone areas of body, thus putting too much stress on other parts of his body. They really want hands-on/guiding/correcting at this point. So - no sports at this time.

He has been in swimming lessons for eight years - can't pull it all together to swim and hates it. We just tried again this spring. We do go to the pool - but more to play. I am hoping to maybe start some water aerobics-type stuff with him next week.

 

I have talked with the office manager. She just said, "Too many hands touching the schedule book..."

 

We do some carschooling already - music and poetry mainly. Much of our curriculum (right now) isn't suited to carschooling, though. He does like to read in the car and always takes a stack of books with us. Educational, yes. But not related to what we are studying. DS is a pre-teen and hormonal and upset about therapy, so not going to touch what he reads in the car.

 

Can't let the roses have a wild year. They are dying from rosette, which will continue to spread throughout the community if I don't get them dug out soon.

[Heathermomster]

So, when do you get home and what days are free? Also, what grade is he again? Is it 6th grade?

[GoVanGogh]

He would be in 6th grade - works at all levels. (Very ahead in literature and science, behind in writing and spelling, grade level for math but could work ahead if penmanship/organization didn't slow him down.)

 

That is the part of my problem - we don't have a set schedule, so no days are always free.

PT is either Monday or Wednesday, over supper-time hours.

OT is either Tuesday or Thursday, over lunch hours.

Plus, he takes outside classes. I am scaling back on those, but he needs some. We are only doing two this summer (music and the one approved sport), but will likely be dropping the sport in the fall (due to cost and drive) and adding an academic class.

 

I have been on the fence about signing him up for an outside class this fall, but - he really wants to and the class he wants will require quite a bit of writing. He is behind in writing, but he recently had a break-through. The class will be a struggle for him, but I think he can/will rise to the challenge. I think an outside teacher can push him to write, where it is a tired mom/son struggle at home.

 

Ask the therapists for a list of sports/activities that can help him.

I already addressed this, but wanted to add: He has a dx of mild cp. He is weaker on one side of body than the other, plus has mixed/dystonic tone. Much of the therapy is focused on making sure he remains as balanced as possible through puberty.

With his last growth spurt, his movements have gotten very quick and jerky and the therapists/doctors want to try and smooth that out as much as possible, make his movements more fluid.

With those two issues, most sports are out.

[SonshineMama]

Our son is a cancer survivor. As of April, he's been on chemo or in therapy for 8 years. It's HARD. Really hard. Some years, we've gotten very little done due to 2+ appointments per week and other years we've gotten a ton done due to a really good schedule.

 

When our son had that much therapy, we cut back on school A LOT. I'd rather not stress out both of us. Stress slows down my son's progress. We don't try to get much done at all on therapy days except fun things and games. We take off therapy days from formal schoolwork. Honestly, we found that the weeks we take off therapy days, he gets MORE done if you total the week. Therapy days he's totally useless from fatigue. This means that he's averaged 2 to 3 days of school a week for years now. That is why he has to play catch up now that he's down to once a week therapy. One thing I've decided-- if he's 19 or 20 before he's done with high school, it's okay. They didn't expect our son to live at one point. If he's graduating high school at an age older than normal, who will care when he's 40? So, having said that, we have decided he's probably taking 3 years for 7th/8th grade so that he can do high school in only 4 years.

 

 

For cooking, cleaning, etc, get your hubby and child(ren) involved. All our children can cook dinner, flip laundry, clean the kitchen, etc. I cook dinner an average of 3x's a week.

[*Michelle*]

I think I would make penmanship its own subject and move everything else to the computer. Handwriting is important, but not important enough to cause hardship in other areas.

[SonshineMama]

I think I would make penmanship its own subject and move everything else to the computer. Handwriting is important, but not important enough to cause hardship in other areas.

Yes ITA - that is what we've done!