Yesterday we had Parker’s IEP. The elephant that was addressed:
WHERE to educate Parker.
The first thought was to bring Parker to school each day for an hour a day.
Not in a typical classroom, mind you.
Rather in a room by himself and a teacher/therapist.
For three months of the year. Then come December everyone would come back and do home hospital services with our Hero.
I balked at the everyday. So we settled on two days a week. But before the agreement was inked, it was pushed back up to three days a week.
There were questions as to why Parker couldn’t just come early each morning. Jokes were made about me not being a morning person. The reality is that Parker’s bolus feeds aren’t finished often until 9:00 a.m. Then come the inhalation and shaker vest treatments. And the meds. And creating that day’s blenderized diet. And a bath.
Parker’s day officially starts around 10:30 a.m., even though I am up by 6:00-6:30 a.m.
It was hard for some in the room to understand (believe me) about how important it is to keep Parker well. When this kid gets sick…..he gets sick. When one of Parker’s siblings get sick, they don’t hang out upstairs where Parker is. Instead they hang out downstairs or in their bedrooms…….away from Parker.
I often repeated what Parker’s cardiologist told us about sending Parker to school, and mentioned the fact that Parker is still alive because how vigilant we’ve been about keeping him away from anything that has to do with sickness.
I understand the need for Parker to see more of the world. But I’m not sure sitting in a classroom by himself is going to meet that objective.
This objective will be much better met by utilizing the Summer and Fall taking our Hero on field trips, inviting neighbor kids to play, and other activities along these lines.
There is a special education teacher willing to come twice a week. An OT willing to come once a month. And a speech teacher willing to come once a week too.
Reed has some reservations about this potential set up as well. If Parker’s right heart cath in July comes back worse, then we aren’t taking him to school…period. And the niggling knowledge of how easily Parker gets sick makes Reed wonder if taking him at all is a good idea.
Educating Parker at home will require that some changes be made.
- I won’t be able to work in any form or fashion, including online. Losing that money will hurt. A lot.
- I’ll need to take a room in the basement and turn it into an official homeschool room. Doing stuff at the kitchen table isn’t going to work anymore. Having the homeschooling stuff strung out all over the house is a total hassle. PLUS, having a room downstairs to go to will help give the feeling of ‘going to school.’
- When the weather is good, my Mom will come out once a week and present a lesson for Parker.
- I’ll need to gather a few more gross motor activities for Parker to do in our basement during the winter. We have a slide and a tramp. I’m thinking of a climbing castle and a basketball hoop. If you have any other ideas, I’d LOVE to hear them.
- My life will be spent at home even more than it already is. That can muck with a Mama’s psyche. I’m going to need to make sure I make myself exercise daily and take mental health days.
I know myself well enough to recognize when something refuses to settle into my heart that I’m not looking at a good decision. And that’s how I’ve been feeling about yesterday’s IEP.
Now I just need to set out a plan…..and stick to it.
About Tammy and Parker
Twitter: AMomBlog
says:
Perhaps a couple of different sizes of exercise balls would be a good option. They be used for building upper body strength. My son rolls on his tummy and walks on his hands to build up some strength and balance. We’ve also done sit ups (sort of) on them as I hold his knees so he doesn’t wiggle off.
Sounds to me like you and Reed already know that IEP isn’t right for Parker. Schools just don’t get it no matter how much you repeat yourself.
Nanette ~ AMomBlog recently posted..Lovable Labels BlogHer ’11 Getaway Contest
Twitter: kadiera
says:
If what they’re offering is only a few hours a week at school anyway, I’m not sure how much benefit that will be to Parker, and I suspect you’re already spending more time with him working on things than they’re intending to provide. Given that, I’d say you may not have to give up some of your income opportunities – it may just be an issue of switching your schedule around a bit.
kadiera recently posted..A Bittersweet Day
kadiera,
One of my biggest problems is a couple of kids who have yet to understand the whole concept of cleaning up after themselves. Simple things like putting the stuff in the dishwasher. Making their beds. Making sure their wet towels get put in the hamper upstairs. Helping out with a meal. Cleaning up after a meal. Emptying a garbage can or the dishwasher.
I can’t count how many times a couple of these kids have looked at me and in all seriousness told me ‘but that’s YOUR job.’ YOU’RE the one who chose to have six kids.
In a different situation I’d just let the house go to hell. But with Parker I can’t. I’ve got to keep things clean. Floors vacuumed. Etc. Parker still puts things he shouldn’t into his mouth. He’s still on the floor a lot. If he can reach something on a counter, he’ll throw it.
It’s up to me to be the lead person with Parker, or else feeds won’t happen, meds won’t be given, and Parker winds up just going from one mess to the next while everyone else pretends they don’t see him or what he’s doing.
I’ve tried it all. From staying up late at night and getting the cleaning done (I just wake up to skillets left out from mid night snacks, cereal bowls with dried on crap waiting for me, and bathrooms that look like a bomb hit them. Again.
I’ve only got so much ‘umph’ a day. Trying to be maid, cook, in charge of ordering medical supplies, insurance and Medicaid person, regular stuff Mom stuff, work at home Mom, grocery shopper, couponer, gardener, canner, dehydrater, AND Special Needs Homeschooler is killing me.
Either my family starts kicking in, or this Mama is gonna lose it.
And it’s gonna be ugly.
Twitter: kadiera
says:
ouch.
I dunno. That sort of thing just didn’t fly when I was a kid, and while I like to think I’m trying to have a more respectful relationship with my family than my parents had….some things just aren’t gonna work. Then again, my mom’s idea of punishment was to make us clean the bathroom, and thus I still hate doing it
I’m trying to remember the name of a system I saw where each child in the family got a list of chores, and each chore not completed got tickets taken away….or something along those lines….anyway, at the end of the week, they had to have X numbeer of tickets to earn some reward. It was amazingly basic behavior mod type stuff…. off to search diaperswappers and see if I can find the thread on it.
kadiera recently posted..A Bittersweet Day
Twitter: kadiera
says:
Ah. Here it is. http://www.accountablekids.com The book is only $17 new; I think you could make the cards yourself.
They’ll refund 50% of your purchase price for submitting a review, which makes it cheaper than buying the book used on ebay.
kadiera recently posted..A Bittersweet Day
kadiera,
Oh, it ain’t gonna be flyin’ here anymore either. We will be having a family meeting. As kids become teenagers and young adults, dynamics change. And this family meeting will reflect that.
Things like this should be EASIER now……not harder.
Ok – first off…..you shouldn’t have to let your house go to hell to make a point. plain and simple, and regardless of how many kids you have, if they live in your house – your rules and they better pitch in. HELLO – ask them if they’ve watched 19 and counting – that couple has a million kids and THEY ALL HELP….WHY because MOM and DAD SAY SO. I just had to remind mine that I WILL NOT CONTINUE TO ASK FOR to be DONE. IT JUST NEEDS TO BE DONE because you live in this HOUSE. If i can see the dishwasher needs to be emptied, by golly so can they. Mom’s shouldn’t have to beg and plead!
Second – don’t let anyone pressure ya’ll into out of home schooling P before you ALL are ready. i want to know what dingleberries had to keep asking the same info from cardio doc! that is crazy.
hang in there – your intuition is much better than anything that anyone else is going to tell you.
Dear Amy,
You wanna come and stay at my house for a while? Pretty please? heh.
I have some kids that willingly pitch in. Others…..not so much. And as often is the case, the few can spoil it for the rest.
I agree with you on every thing you posted above.
I went and picked up Parker’s meds….and broke down and got a Dr. Pepper. It’s amazing the healing properties a Dr. Pepper over ice can employ.
Hi Tammy,
We were in your same spot last year. We decided to do homebound school for Max through the school district. We have turned our diningroom into the school room because it’s the only accessible room that was “free”. Shelves do wonders for organizing. We can easily put the school away for dinner. But most of the time we just eat at the breakfast table, unless we have friends over. And then, they always love to see all of Max’s school work and art along the walls.
We’ve really had an amazing school experience this year. Max is homebound because of his immunity, so he’s not able to be around the kids. But, they come to him every day over Skype. It has been the most incredible thing. So much so, that our local nbc station came out to do a story on it. Here’s the link if you’d like to watch it.
http://www.9news.com/news/local/article/198634/346/Student-joins-first-grade-class-via-web?odyssey=mod|newswell|text|FRONTPAGE|p
Deana,
You just MADE MY DAY. I am so glad you shared this. I hope you don’t mind if I share it as well.
PS: You’re beautiful! And Max. Well, there’s not enough yellow in the world to describe how great Max is.
Oh Tammy…
You are in a similar spot that we were in a few months ago. We made it our choice to homeschool our daughter, Sarah, who is also medically fragile with developmental delays.
Since November, she was admitted to the hospital 5 different occasions with 2 transfers to a regional medical center. With every illness, she was worse and the recovery times were longer. Her health was steadily declining at an alarming rate. We also noticed that she was regressing in her milestones with increased aggression and behaviors that she rarely showed before this school year.
Her health status regressions coupled with the seemingly lack of interest and care on the part of the education professionals was enough for us to pull her from school. We’ve decided to home school her with the help of K-12 academy where they will provide lessons and materials to teach her based on her current IEP.
The school has free enrollment and we are only responsible for school supplies that she would need to complete her lessons as we would need to in a public school setting. If a computer, scanner and printer is needed, they will provide one for the school year as well as the school hard bound books and workbooks.
Yes, these kids needs to have socialization and interaction with others but at what cost? Something that we needed to weigh with Sarah. Something that you are deciding in regards to Parker. Pray. Pray hard. Know that only you and the family are able to make the right decision for Parker.
Kim
Absolutely! Please do share it. It’s making the rounds in our school district and state with school officials about how it CAN be. I want the word to get out that our kids can be included, it doesn’t have to be a fight all the time.
This is Max’s facebook page, https://www.facebook.com/pages/The-Maximilian-M-Watson-Trust/213087762054796
Deana recently posted..Be KindBens Bells Distribution
I don’t see how an hour three times a week in a classroom by himself is actually going to enrich his life in any way. Expose him to germs, yes, but make a difference in his life in any other way? I don’t see it.
As for good indoor physical activities, I second the exercise balls. Roll on them, bounce on them, roll them back and forth, etc.
Another good activity, that also works eye movement and tracking, is to hang a wiffle ball from the ceiling. Place it chest height and let him bat it with his hands or a stick. Wiffle balls are cheap and if it hits him it won’t hurt him. Just be sure to hang it from something secure because little boys like to yank on the string!
And one last activity that works hand-eye coordination. Give Parker a clear plastic cup that he can hold by the bottom with one hand. Roll small balls or marbles to him on the floor and let him ‘catch’ them by trapping them under the cup. Once he masters that, bounce the marbles off of things, making it more difficult. Lots of fun and great therapy!
Wendy recently posted..An Idea is Forming
if you are not satisfied with the IEP, insist that the team reconvene. Find an advocate that can help you through the details of the IEP and can assist the team in coming to a decision. Never sign anything if you are not in full agreement! Make sure you read your Parent’s Rights handbook! You may need to use it! Keep in mind that by law you can bring ANYONE you want to the IEP meeting (this is a TEAM decision)- you can bring a friend, advocate or even lawyer if you feel it is necessary. IEP’s can take many many meetings to finalize. The IEP is not finalized until everyone is in agreement. There should be a way the therapists can come to your home- it sounds like the only reason they are asking you to bring your child to an empty classroom is to make it more convenient for the therapists (if there are no other children in the rooms, this is clearly NOT socialization time!). Make sure you have documentation from doctors as to WHY you need to avoid germs etc. Document what you are doing as far as learning goes. Chart progress. You will need this if you are the one providing the instructional setting. (as far as gross motor activities- simple tumbling mats, streamers to dance with, “moonwalker” shoes for a balance challenge, low board or simply tape on the floor for a “balance beam”, a therapy swing (you can find ones for basements that have flat platforms for children to lay on and push with hands on the floor or sit on), tunnels to crawl through, scooters (have him lay on it and use his upper body strength to push with hands or sit and use legs to scoot)… lots more, but that’s all I can think of now- of course, not all of these may be appropriate for Parker- but you can always adapt things!
Pam recently posted..Making Use of Those Wonderful Resources Part II !
Pam, the therapists are willing to come to our home. The question was trying to get Parker out of the home. And he’s at a level now where participating in an adaptive PE program would help him. I’ll be taking him to a summer adaptive PE program this summer.
Sometimes, when Parker’s been home so much and get bored out of his gourd, we get some not so fun behavior issues. I’m going to address that in our homeschool program too!
Twitter: marriedlife
says:
It sounds like this is a crazy situation to me.
I wish you didn’t have to give up your online stuff… How much more will you have to do to formally homeschool than you are already doing? Is that the problem?
And I totally agree with some of the first posters. Those kids live in that house, it’s part of their responsibility to help with the upkeep. I don’t know if this is possible, but I’ve heard of some people assigning one bowl/plate/cup to each person in the family. If they use it and don’t clean it then they have to clean it before they can eat again.
I really need to get on the ball with my 4 year old, he’s horrible about picking up after himself, but I haven’t been that great about teaching him either.
Hi Tammy,
Your IEP sounds like a good plan. A good goal for Parker. Is he ready for it this year? Well, as you stated, the heart cath will tell you a whole lot. You can then change the plan. I always go with the concept you have to have a plan to be able to change a plan.
I really like how you have homeschooled Parker so far. And your thoughts as to how to continue sound great.
An idea for you. Have Parker assigned to a general ed class. Not for accademics, but for socialization. Kind of like a pen-pal thing. Skype and/or home video might be a way to do this. He could tell/show his classmates what his classroom is like and they could do the same for him. Where appropriate, you could study the same thing (adapted for Parker) that they are.
Have a great day!
Thanks for this! An IEP is such a confusing thing… and so full of emotion!