Thursday, October 20, 2011

Those moments as a special needs mom when you feel helpless

Max has been limping when he's gotten off the bus at his school in the morning. His teacher mentioned it a couple of weeks ago.

I thought that maybe we weren't putting his braces on correctly, which has happened a couple of times—his heel hasn't been all the way in. So we've made sure they're on right but still, he was limping on occasion. We have a visit to the orthopedist scheduled for next week, and I was going to discuss it with him.

Max's teacher emailed me again yesterday to say he limped after he got off the bus. She suggested that his physical therapist at school take a look at his bus seating. Usually, I just help him up the stairs of the bus, and the aide walks him back and seats him.

The PT called me this morning. "Max's legs are squished like a frog's on the bus," were her exact words. Somehow, he was sitting with his legs on either side of the booster seat (which was too small for him), knees raised, feet on the actual bus seat. What his PT said next was even more upsetting: Max wasn't seated safely. There was a five-point harness that wasn't clicked on its lower half, because it was too tight. The aide had also placed two different seat belts over him, in an "X." If there were ever an accident and Max was thrown forward on impact, his PT said, his throat and chest area might have hit the place where the straps met and gotten hurt.

I was distraught. Both because Max had been in discomfort all these weeks, and because I'd never thought to see exactly how he was strapped in. Max is not a kid who would speak up and say, "This is not comfortable." He just tolerated it.

We have generally been lucky, and happy, with this bus company. The driver is competent, unlike some of the creepy ones I wrote about over the summer who did stuff like leave kids on boiling-hot buses. But this situation was unacceptable. Max? In discomfort? And unsafe on the road? Whoa.

I called our school district coordinator, the transportation coordinator, and the bus company. They were all duly horrified. Max will be getting a bigger booster seat; he needs some support because if he were to just have a seatbelt strapped over him, he would slump to one side. I expressed concern about the judgment of the aide on the bus. She is totally sweet, but clearly not totally with it. The bus company supervisor is at fault, too, for not being more on top of training aides about safe seating procedures or doing occasional checks, which I don't think is too much to ask for.

This is a lesson to anyone who puts a child on a bus: Check to make sure they are properly strapped in. Although I don't think I would have known that the double seat-belting was unsafe if the PT hadn't mentioned it.

OK, the situation has been dealt with. Max is fine, and the only thing bugging him is that he'd much prefer to ride an "ih us" [big bus] instead of the mini one he's on. But right now, I feel so helpless. Of course, I do my best to watch over Max, and I know it. I'm generally adept at heading off problems and quickly handling ones that crop up. Yet clearly there are things that can escape my attention, and tonight I am feeling the weight of those unknowns.

UPDATE: Ok, now I am LIVID: The bus company DID NOT CHANGE HIS SEAT. When I called over there, a woman said "Why are you upset?" Um, lady? My son was seated in a way that was both unsafe and uncomfortable for weeks, without my knowing. Perhaps you too would be A LITTLE UPSET? Our district coordinator is on it.

UPDATE 2: New booster seat installed for his ride home and inspected by head of PT department at his school. Max is comfortable and secure. Phew. On to the next drama!


  1. I totally get that feeling. You know you're doing the best you can, but you still feel guilty that you haven't thought of everything and your kid suffered because of it.
    You did what you were supposed to, though, and now Max will be safe, comfortable and happy once more. Don't be too hard on yourself.

  2. Ellen I feel like this about the three 'normal kids as well as Ashley.. like us you do your best. You can't do more.

  3. We all have these moments of helplessness - because ultimately we can only do so much.

    I've seen this on the bus too - poorly strapped in kids, kids sitting in 5 point boosters with just the middle piece connected because the kid is too big.

    Happy you were able to make a change. Maybe this will bring more awareness.

  4. Ellen don't feel guilty nobody's perfect your best is good enough Max and Sabrina have THE BEST MOM as do I :)

  5. I've had moments like this, too. After Little Bird swims at school, I know they don't put her braces on perfectly. It blows my mind that our babies can't always communicate to us well enough to say that something hurts or bothers them. It's so upsetting. The guessing game is a tough one. But, we're expert detectives and always seem to get to the bottom of it. Anything for our babies!!!

  6. This has happened to us so many times that I follow Emmett onto his bus and either take care of the seat belts myself or supervise the aide.

    Yeah, I'm that mom. And you know what? I DON'T CARE.

  7. Ellen - I know how you feel. I am constantly thinking about T-man's well-being and wondering whether he is okay and happy and comfortable. It makes it even harder because he is non-verbal. I have some guilt about certain things, but I do my best to make his life happy.
    and I have to say, T-man has the most wonderful people that take care of him at his school, including his busdriver, whom I adore. They watch out for him too and for that I am grateful.
    thanks - you are a wonderful mom to Max and very inspiring. Kristen

  8. The school bus (long or short) tends to be the black hole of craziness.

    I once called our school transportation coordinator to report that the substitute bus driver (who was going to be covering our route for a few months) didn't give SB time to put her seatbelt on before zooming down the (winding) road.

    The answer? "Well, the kids aren't required by law to wear seat belts. NY law requires that we have them, but not that the kids put them on."

    Umm... really? I'm the mom who STOOD IN FRONT OF THE BUS TO PREVENT THE DRIVER FROM GOING until her seatbelt was on. He eventually got the hint....

  9. I love Julia's comment. Ellen you found out the answer. You helped provide that supportive team (pt/teacher) who inquired with you and investigated! It can't always be you. You solved the problem and followed up. You are that mom. It is hard. Sometimes I wish I wasn't "that" mom but that's probably the only way some things get done.

  10. It's all so very scary as soon as they are out of our nest, even if it's for a few hours at a school where there is a great bond of trust. Glad to hear things are going to be fixed.

  11. Wow...there's always something, isn't there?? But, we can only do so much, and at some point, we have to trust others to watch over our children. So happy you got it resolved, and that you're able to teach us with younger kids what to watch for!!

  12. I rode the "short bus" all throughout school because it would've been unsafe for me to walk to and from the bus stop, especially in bad weather. CP pride, woot! Anyway, the drivers and aides on the short bus DO NOT CARE. AT ALL. ABOUT ANYTHING. They think just because they're driving the disabled kids, they can get away with anything. I had buses simply not show up or show up ridiculously late on a regular basis and almost never got an apology. Random kids would appear and disappear on our bus sometimes, be there one day and not there the rest of the year, and no one would ever tell us who the kid was or what he was doing there. I had one driver who not only drove ridiculously fast, he was ON HIS CELL PHONE while driving. I was absolutely terrified. I had aides who interpreted their time on the bus as naptime. My mom was on the phone with the bus company at least once a week complaining. It is sad and despicable what happens on the short bus, and I'm saying this from an inside perspective. Frankly, I am saddened and disappointed by what happened with Max, but not surprised. I can picture the same thing happening on my short bus.

  13. I totally agree with son is on a lift bus and I am always watching the aide son is non verbal and he has to be in his chair..I had an issue with the bus over the summer..when an aide trying bringing my son to the bus without his chair! Best believe I was on a war path! The school..the bus company and board of education heard from me...and it was not pretty...needless to say...things were corrected! I thank you for posting these blogs cause they give me strength to keep on kickin butt for my son!

  14. are moring bus has no aide so my husband gets on the bus and puts are 5 year old in his 5 point harnes and my afternoon bus aide tells me everthing that going on he also tells me were to complane and who to complane too he says he lost his driving prevleage from this bus garage and so he says they we the parents owe him this when he does not like some thing. beging of the the school year the bus driver called told us are son was going to be droped off at 3:28 and he didn't get home all week in tell 4:08 that made me so upset that I called and told them that Iwas going to get the state of Michigan in vovled becaue any child under the age of 8 can not be on a bus for more then hour from the time they left the school he was on 1:15min well now he is home at 3:30 or 3:45 depands on how many drops so I under stand were your coming from and its really helpless feeling but stand up to them we are here to pertect are child mader what

  15. Another case where parents are made to be the watch dog. My son is still in a booster seat at 9 because I insist, the school says at his age he isnt required to. But Im lucky that his bus driver is great, she loves each special kid on her bus. Last year the district wanted to send the busing to a independent company and parents fought against it because our drivers are great, many having been there since I was a kid and being a small community we know each other and are neighbors. Ive often been offered the services of a child advocate and i refuse....thats my job.

  16. Is it at all possible that you could put something on Max's ipad saying "I'm not comfortable" or "Please fix the straps" or something? I have something on my communication device that says "Please tighten the belt, thank you." Because I'll go backwards when the belt is not on right. I sit in my chair on an accessible bus (a city bus not a school bus) but it's the same idea. The driver has to do all the ties down right. Sometimes I just ignore it because they do it so much that I have had enough with complaining. But if it's really bad I tell them.

  17. how awful!! bus companies are horrid in general with the snarliest customer service in the universe, but how horrid that they screwed up and then COMPOUNDED it by not fixing the problem and then being eye-rolly about it when you called. i hope the school will be alert from now on; sadly, i don't think you can ever, ever trust the bus company.

    (and i love anonymous 10:02am's comment -- rock on, scary mom in front of the bus!)

  18. Where I live you have to pay for bus service, so we just do it ourself. You don't get a discount for two, you have to have three kids to get the cut, and it's not that much. Usually someone is headed that way (me, mostly) anyway, and it fits with my schedule most days. Cheaper for me to do it myself--safer, too, apparently.

    If I were putting my kids on the bus, I'd "do a Julia" too. I don't blame you for being pissed off, Ellen. That's pretty outrageous how Max was mishandled. Just not acceptable.

  19. The only REAL way to deal with this is to make the woman at the bus company ride to work for the next month sitting in a toddler car seat with her knees jammed up under her chin. I hope she has a really LONG ride to work.

  20. So glad you figured this out now. I often watch them load the bus at school and have wondered if the drivers have any special training. I'm thankful I or my husband can take Moe to school. He's already wiggling out of his car seat in the car - can't imagine what he do on the bus.

  21. Wow Ellen. What a lesson for all of us. The first day Jake rode the bus this year the aide had no idea how to use the built in 5 point harness. I had to get on the bus and help her figure it out. He rides a different bus with a different aide and driver home in the afternoon. I have never gotten on the bus to check it because he is always getting off when I go out to get him. I guess I need to check it too. Thanks for sharing this with us. Stay on the bus company - that is ridiculous.

  22. Your post made me cry. I am so sorry you are going through this. And Max. Ugh. I swear, we are so often going through very similar things at the exact same time. It's eery, but so helpful knowing I'm not in it alone.

  23. Ah, Sarah, I am sorry you are going through this too, and I was bummed to hear about other people's experiences here. I lost it when I spoke with our district coordinator after the woman at the transportation department said, "Why are you so upset?"

    Dani, yes, like you I'm a detective. Like Julia, I'm THAT mom. And onemomstips, yes, I am the watch dog once again. In this case, though, there is no reason I should be that watch dog. I am going to be sending a very strongly worded letter to the transportation company and ask how they plan to put systems into place to check that aides are securely fastening kids in, because I am 99.9% sure that Max wasn't the only kid being buckled in wrong. At least it didn't take something terrible for us to figure that out.

    There need to be some official regulations in place (ideally, actual laws!) so, as anon so well put it, a school bus is not "the black hole of craziness" or the kind of experience Spaz Girl had growing up.

    I was talking with a friend today about bus insanity when we were kids. Nobody cared if you wore seatbelts and we'd bounce along the aisles and practically hang out the windows as the bus sped along. But we were typical kids. If something wasn't right, we could speak up. Max wouldn't think to—even, Tooner, if I programmed it into his iPad. He just accepts the discomfort. If he was in real pain, obviously, he would have just cried.

  24. Even as I was sitting here reading this, I had my weight shifted wrong and my leg fell asleep. If someone had picked me up and thrown me on a sidewalk, I probably would limped too, if not fallen over. Gee whiz, the things we take for granted!

  25. Mango is going to be starting preschool soon, and will probably be riding the bus. All I can say is "Oh my God! Oh my God!" That's so scary - and I'd have been absolutely livid as well. Heads would have rolled. It may not help, but I want you to know that your going thru it first and blogging about it, helps a bunch of us to know what to look for, and I appreciate your and Max's hard work. Thank you Ellen.

  26. Been there done that, twice. 1) A student w/down syndrome was not the most well behaved or petite kid. The bus folks were using a standard car seat for her, even though she was well over the height/weight limits for the seat.

    2) A student at my school used a w/c and his class was going on a field trip. The teacher was going to request a bus with a w/c lift. Uh, NO! His chair has no head rest AND it is not transport approved.

    He ended up in a "race car driver seat belt" (aka EZ on Vest) that neither the aide or driver knew how to install or use.

    Thinking about worst case scenario for either child had I not intervened is a bit scary.


Thanks for sharing!

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