There are pros and cons to consider when a child reaches school age and of course each school district’s policies may vary. Parents of CWDs spend long hours conferring with school staff and HCPs on this and hopefully other parents can shed some light on the issues of concern.
Yes, we have to go through this process already with out son on the Autism spectrum. IED meetings, planning, goal setting sessions, etc., I’m guessing it’ll be the same type of thing…when in reality, he’ll be no different from any other kid except that he’ll need to take insulin when he needs it.
in reality, he’ll be no different from any other kid except that he’ll need to take insulin when he needs it
@ClaudnDaye except that you will be trusting someone else to be giving him insulin and treating lows, and that opens up a whole can of worms. It’s kind of crazy the types of difficulties that can come up with what seems to be fairly straightforward process.
What we’ve seen on various message boards is that districts tend to give a lot of push back if people want to manage their diabetes different from the way the district is used to. So that may mean pushing against your kid taking on more autonomy, or having a cell phone to send out BG numbers. It may mean a nurse refusing to monitor Dexcom numbers, or refusing to give insulin at more than the prescribed, assigned times per day, or refuse to use variable ISFs or carbFs as your son’s needs change (i.e. they will only use the numbers listed once-per-year by the Endo on the care plan even if our settings change weekly). Or some places refuse to do site changes if a site is bad. Another common theme is that they refuse to send a nurse along on field trips that are mandated for all kids to attend, meaning either you have to go on all of them (including muliti-day overnight trips) or you have to fight with the district to have someone who is trained along.
We’re hoping our district won’t be that bad – we’re also hoping to manage most of the D-care ourselves so that our son almost never has to go to the nurse. As long as we can figure out a way to remotely bolus him and can get a clause in our agreements that the nurse will come to Samson’s room to administer a gummy (or ideally that his teacher is willing to just cruise by his desk and give him a low treatment when an alert goes off), I figure his day-to-day experience of school will be very similar to that of other kids. My goal is to minimize his interruptions during the day and minimize the ways in which he is singled out from other kids for his D-care. Our dream is that he would only need to visit the nurse if his site gets dislodged or he’s running really high and nothing we’re doing is bringing him down. Or the other stuff, like fever, nausea, which all kids go to the nurse for.
We are in serious discussions now regarding whether to home school him for this very reason. I hate the thought of putting my child’s literal life in someone else’s hands other than my wife and I.
My wife has always been reserved about home schooling because she said she doesn’t feel qualified…I’m told her numerous times that an MBA is MORE than enough qualifications to home school…especially today where there are so many resources. Curriculum and materials are provided…I’m sure it’s harder than that, but it’s not something she can’t do. She’s amazingly intelligent (sometimes sickening to me…because I lose a lot of arguments to her.)
We’ve discussed also home-schooling Ronan (our autistic son), but we’ve been fortunate to locate to areas that have AMAZING education programs specifically for children in the spectrum. She’s meeting with educators today to talk about his “middle school” transition.
I don’t think you need to home school to achieve that safety. We send our kid off to daycare everyday, with caregivers who have at most an associate’s degree and are watching 12 other kids per teacher, and yet they can all manage Samson’s care safely. The key is having the numbers, having a simple-to-use care plan tailored to the skill level of the person doing the treatment, an open line of communication with someone at the school and having someone close by who can come in an emergency.
The way I see it, the worst lows and the worst highs Samson has ever had have been on our watch – sure we are doing way more of the care than his school, but they are with him approximately 40 hours per week and are still managing to keep him safe using our very minimal guidelines. Could his control be even tighter? Sure, but it can be done safely.
I would suspect home schooling has other downsides. I have a friend who homeschools her 4 kids and it seems like the only way she can swing it and it’s not terrible is because she’s part of a co-op that teaches the curriculum to them two days a week and she’s more like a lab assistant. That also means they have a “class” of about 20 or 25 other kids. Though she was a national merit finalist in high school and super smart, etc. there are certain subjects for her (mainly math and science) where I would really be concerned her kids were getting short shrift if she was the one doing the teaching. WE all have those gaps in our education. Plus, my sense is that homeschooling requires more than smarts; it requires a certain parent-child dynamic that gets more challenging as the kids get older.
Also, is there not a chance that your wife might want to go back to work in a few years, given that at least a few of your kids may wind up being in college by then (not sure their ages but I’m assuming)? Homeschooling would push that line down far into the future, possibly indefinitely. Although maybe not – my homeschooling friend actually does two jobs, they’re just on the weekends. And I could see homeschooling for part of the day and working part day if that was an option.
My kids ages are 22 (already graduated college / working as a software engineer in Germany), 14 (9th grade), 11 (5th grade), 10 (4th grade), 3 (Liam), 1 (baby).
She’ll be at home AT LEAST for the next 4 years…probably more since we’re talking about HAVING ONE MORE (yes…I know we’re crazy)…to hopefully yield her the daughter she’s hoping to have. But after that one, we’re done for sure (even she says so…which is the difference between the previous children.)
Our thinking is that, if we can homeschool him through Middle School…he could pick up public education there with the knowledge to SELF manage his diabetes (if the schools even allow this…haven’t checked into it this far yet.)
My wife’s plan is to finish her CPA and start a small business working from home managing the books for small businesses around the area. It will provide her with the ability to make her own hours, while still juggling all the craziness that is having a large family.
Good luck on the girl baby! It’s my understanding that once you’ve had 3 boys in a row, the odds of having another one are substantially above chance. So I don’t know if those are odds you’re willing to play for an additional child.
We are now grappling with that. I’m expecting and we found out it’s a boy again . I am having a really hard time with it as the timing is terrible and the only reason (in my head) to even consider having another kid was if it was a girl. If our second son was a girl we would have been done for sure. I’m sort of grieving the fact that I’ll never have a daughter at this point. And I’m feeling a bunch of guilt about bringing another child into the world with elevated risk of diabetes.
My dad had 6 sons, then 2 daughters, then closed it off with another son. She’s doing a “different diet” this time around…one that she’s read is more conducive to a female being conceived. We’ll see. We’ve discussed whether it’s “responsible” or “insane” to attempt another, but we decided that we aren’t going to let “life” and poor luck change our resolve. We can care fine for all of our children and it’s not driving us totally insane, so we’re giving it one more shot. Some would probably say we’re crazy though after having had a child with cancer, a child with autism and now a son with Type 1 diabetes. (but I’ve never given a damn what others think of me…don’t think I’ll start anytime soon.) (Note: Yay! I got to use one of the approved curse words!!!)
We both have huge families (I have 9 siblings, my wife has 7), so we’re used to the dynamic. It’s just the financial part that makes us carefully consider having more. Now with T1, that’s really my underlying consideration even more than the financial part because the emotional toll of T1 alone is more than all other medical (or other) issues our family has ever had…combined.
I’ve heard of this girl baby diet. I read a study on it and a friend used it and did have a girl. There’s only one (small) pilot study though so I wouldn’t put too much stock in it. But I do hope it works for you!
For us the extra kid really screws things up short-term. We live in a 2-bedroom, 1 bathroom and with 3 kids that’s impossible (and possibly even a violation of our lease). So we’ll have to find another space in a very expensive city, likely paying more than double for rent or plowing all our savings into a dinky house that is only marginally bigger than our apartment (and also paying more than double in monthly expenses). And even when I’m off for maternity leave or my husband is off for paternity leave, we’ll likely need additional help, so we’re talking about potentially having a nanny on top of the daycare for Samson and the other one. And I worry whether the standard of care I can provide Samson will be as good. For me, staying home is not an option, just psychologically; I love my kids but don’t enjoy being home with them for hours at a time. So the expenses necessarily go up with each kid unless they’re spaced a little better. We could move to a cheaper place but then my husband would spend less time with the kids which would be really bad for him. Or he’d have to earn substantially less money.
I work near DC (McLean, VA), and I live in Fredericksburg, VA. It’s (depending on traffic) anywhere between a 1 and 2 hour commute for me. Fortunately, I telework (work from home) 3 days a week, so I only have to go into the office 2 days a week…and only for 4 hours each day (get to work at 10AM and leave at 2PM…this way, I can beat rush hour most of the time). It was a trade off for us to live in a place where we could have (in order of importance) a) a good school district for our kids (Stafford County is top 20 nationwide), b) good house on some land for an amount of money we could afford (We have some acreage and a large enough home for the amount we were paying for a townhouse (with no land) in our old city we lived in (closer to DC). We had to “downsize” (financially) to have my wife be at home. I understand what you’re saying, though…had my wife not wanted to do it, I wouldn’t have asked because I know being at home all day can drive you crazy. She’s able to get out a lot, though, since she picks up/drops off all the kids from schools, does the shopping, etc., She loves being at home all the time, so I’m lucky in that regard.
This is a highly personal choice, of course.
When my son was diagnosed last year, in 5th grade, we did discuss this option briefly. It would be easy for us for family reasons (we both work from home now), and because I already teach him some advanced subjects at home, such as programming (he is a bright kid).
We quickly rejected the idea, for several reasons. The first one is that our first imperative for him is that he never be limited by diabetes. This would be a huge limitation to us – forced to homeschool because of his disease, and cut off from 8-hour-long daily interactions with other kids. The second reason is that we want him to be as independent as possible from us, as early as possible. So, from the very first day, he did his own injections, calculated his own boluses, and made his own decisions. FYI, at his school, there are older T1 kids than him that are much more bound by their disease.
So, for both reasons (no limits, and independent management of diabetes) we decided to leave him in school.
I understand that your parameters are different, of course (age etc.). I am spraying for garlic mustard right now so I can’t post too long, but in the next few days I will discuss our negotiations with the district and our 504-plan, which we designed ourselves and which gives us a huge amount of flexibility.
This is the biggest reason we’ve discussed to NOT home school. We’re afraid that interactions with only his brothers won’t be enough, and aren’t the totality of the kind of social interactions that a child should have when growing up.
The good news is that we still have 2 years to make up our minds!
I am under the same conundrum. My 5 year old will be starting school this fall. To homeschool or not to homeschool? On the plus side, my wife has a masters degree in education. On the downside–she has first hand knowledge of the inadequacy of the school system and all the horror stories that come with it. Social interaction is critical and I believe it is critical for early development. As it stands, our plan is to homeschool for 1 or 2 years–until he can become a bit more independent. What scares me is the out of the blue drops in BG that happen for no apparent reason. Our school doesn’t even employ a full time nurse every day. The nurse actually rotates between several schools over the course of a week.
I really hope the Omnipod Dash system is released on time. My hope is that a semi-autonomous system could get us by throughout the day.
I am home all the time (I work from home) so it’s not the home I mind.
And I actually hate pick-up and drop off
(did you bring your lunch box? Can you please put on your slippers? Put your backpack on the hook, please? Sit in your car seat, don’t squirm so I can click this awful 5-point harness on! Where’s your water bottle? Where’s your share toy? Stop hitting your brother. Stop putting your feet in your brother’s face. Can you please carry your own backpack up the stairs? How was your day? (bad) What did you do today (nothing)…aaah!!!)
Plus I just don’t enjoy being around any kids (even mine) so many hours a day. It’s awful to say but it really is that simple. Even on the weekends, if I don’t get 2 hours away from my kids in the afternoon I will be really screechy and out of patience by bedtime. So I think even if I were unemployed we would still be paying for preschool and so for us a lot of the calculations tally up in favor of the city and our kids going to public school. But if I were a little more maternal I guess we may have made different calculations.
We would have our son in extra-curricular activities so our “major” concern really wouldn’t be a concern to the extreme for families who don’t ever have their children out doing other things. I’m sure we’ll decide what’s right for us in the near future so that we can work toward being prepared for either situation.
If you are doing homeschooling because you think it is better for his education, that’s great. But don’t let the disease sway you too much.
It seems much harder to fathom now because of his age. But by the time he starts Kindergarten, he will feel more comfortable with diabetes, and so will you.
I was pretty much self-regulated within a few years of diagnosis. And I am sure Liam is smarter than I was at that age, so he should be fine. Plus you have CGM’s and pumps and BG tests all kinds of things we didn’t have.
I am not saying anything for or against homeschooling, I am just saying the disease should not be a big factor. Just wait a few years, things will seem much different.
The other thing I’d recommend, if you haven’t done this already, is to join a local list-serve that focuses on support for parents of diabetes. We have one here called Brave Buddies. From there, you can find other parents with kids in the schools, and ask them which schools are good and bad for care, figure out the pitfalls in advance, and get an idea of whether the school will address Liam’s medical needs to a level that meets your standards. It’s very possible that your school district has several T1s already there, and some places do offer stellar care. i’d definitely do that and make sure I knew exactly what my options were before deciding on home schooling upfront.
We thought that would be the case, but frankly it hasn’t gotten any easier for us…
11 posts were split to a new topic: Dexcom and site changes: tricks for toddlers?
I’m very interested to hear more about this