Here We Go Again

I thought we were settling into Preschool nicely. I have really loved his teacher and aides–they are genuinely excited and happy when he has a good day and more importantly, they seem to enjoy having him around. I have felt so blessed in that regard. I even get big smiles and happy greetings from random teachers every morning, so in general, I’ve felt warm and fuzzy about this new phase of Charlie’s education.

And then there’s the transportation issue.

When Charlie started preschool, I was taking him and picking him up. Call me crazy, but I actually liked getting a few minutes every day to chat with the teacher and see how things were going. I’m one of those nutty moms who likes to know what’s going on in her three-year-old’s life.

After the first week, we were told that we could no longer park, go to the class, and pick up our kids. We were told that construction would be starting soon and our kids would be “unsafe.” Made perfect sense and I started making arrangements for Charlie to ride the bus. In the mean-time I was instructed to use the regular carpool line with everyone else.

That’s where the problems started to crop up.

You see, Charlie has an issue with over-heating. Basically, leave him in the heat for too long and he starts to “wilt.” He becomes extremely drowsy, lethargic, and glassy-eyed.  Not a great situation, but one that’s pretty easy to keep on top of. I don’t know if it’s related to medication or brain injury, but I’ve found this problem with several other CP kids including one in Charlie’s class.

When I went through the regular carpool line, Charlie was sitting outside for about 45 minutes before I made my way through the line and got him in the car. Not good. The bus should be our other option, but it doesn’t have Air Conditioning. It’s still in the 90s here and an un-air conditioned bus in the afternoon heat is a no-go. I’m also not entirely clear on how long the kids wait around before boarding the bus and rolling out.

So we’re either roasting on the sidewalk or roasting on the bus–not to mention I’m not exactly thrilled about being forced to put my three-year-old on a bus. I do like to see Charlie’s teachers and get a little daily update since he can’t tell me what happened that day.

The teachers quickly figured out a solution–we could park at the handicap spots in the back parking lot and pick up our children. The spots are nowhere near the construction vehicles/materials, and this way our children wait a brief amount of time. We had this plan approved by the Vice Principal and they even made a little sign so the crossing guard will let us in the back.

It’s a beautiful system.

You can imagine my surprise when the crossing guard told me on Thursday that we wouldn’t be allowed in the back any more. Apparently the principal saw us and wasn’t happy. She wants us to use the handicap spots in the front–not the back. You know, the one that’s completely blocked by the carpool line.

Sigh.

I want to be agreeable. I want to be nice. I want people to just use common sense. Charlie has a medical plan that clearly states he’s not supposed to be out in the heat. Why is that so hard to follow? I’m not asking for special treatment so I don’t have to wait in the carpool line. I’m asking for special treatment because my child needs it. I mean, what’s the point of that fancy-dancy medical plan if they can just ignore it?

Tuesday we’ll see what happens. If Charlie sits out in the heat again, there will be meeting (the second since I’ve already met with the principal about transportation). Still trying to figure out what kind of meeting. Sugar and honey? or guns blazing? My Dad suggested calling in the posse of lawyers I call a family and having them come with me to the meeting. I’m pretty sure he was kidding. My husband suggested just calling the principal and asking who her supervisor is. Gah. I hate this stuff. I hate that you have to fight for the right thing when it should be SO obvious. I hate that I have to sit through long talks about shunt failure when my kid looks up at the ceiling a lot, but people think it’s fine to leave him roasting in the sun.I hate that you have to force people to follow the law. I especially hate that.

And he’s three. I mean, how many three-year-olds are riding buses? Going to school for seven hours a day? That’s a lot and besides just following the law, wouldn’t a little compassion be nice? I know, too much to ask for. I need to stop asking and start demanding.  I just wish this stuff were easier.

special needs bus

Bus taking my baby away

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Comments

  1. I say ~ Sugar and Honey {with your gun in purse}. It’s worth fighting for… be kind yet assertive. I COMPLETELY agree with you… both Charlie and you NEED for you to pick him up {minus heat}.

    Much love.

  2. Good luck with that meeting. I agree with what Megan said, start sweet but have the gun ready in your purse. Just explain to the Principal that you don’t want to cause any problems, but that you want his help in finding a solution. Have a copy of the medical plan with you so you can show him, if needed.

  3. MelissaInk Designs says:

    I’m sorry you have to go through this. Clearly, there’s an easy solution here … why the principal has a problem with it is probably more related to their desire for control than their desire to do what’s best for the students. SAD. Also, construction? Didn’t they have ALL SUMMER WITH AN EMPTY SCHOOL to do any necessary construction?

    • Melissa–I didn’t even get into the so-called “construction” which appears to be several pieces of equipment hanging around in the parking lot. I have seriously never seen any actual work being done.

  4. This is the kind of stuff that just infuriates me because it’s just simple to do the right thing, period. I am a school principal, and my suggestion to you is to go in and be calm, yet assertive. As the principal what his suggestions are. Ask why you cannot use the parking in the back. Ask what the problem is with parking in the back. Take Charlie’s health care plan, and state exactly what you did in your blog here today. If you do not get what you need, don’t let the meeting go long, just ask who the principal’s direct supervisor is and call both that person and the special education director in the school district. You are not asking for the moon and stars, you are asking to get what Charlie needs and what he has a right to. If you have to take it to the next level, you might want to consider getting the other parent involved at that point. I wish you the best. I hope that this goes well and doesn’t turn into something awful.

  5. Sometimes I have had to resolve a situation like this for a child in school – lots of reasons why it was me, the therapist. I relate to Lois’ infuriating feeling. I always struggled more if I was challenging the school for our own child, but her suggestions are good if you can stay unemotional while asking. I like Megan’s answer, too.

    Even in 90 degree weather, shade helps enormously – is any option for shade and shorter wait-times? Short-term solution is to have an adult hold an umbrella over him.

    Taking your concerns outside of the principal’s office – depends on how big the district is. In the very large district I once worked-in they had a person whose job was to intervene in transportation-special ed issues. He turned-out to be marginally effective and well-intentioned but helped in a situation where the short buses were loading and leaving the school BEFORE the school day ended (illegal). (Many bus drivers did not like me after that.) I think it is important to engage a bus driver as an ally for your child.

    Outside of the principal is the director of special ed – kind of a lateral move instead of over her head. You might specifically ask sped-dir to work-out something for Charlie directly with the principal (with your armed purse tucked at your side.

  6. I agree with everyone else… talk to the principal. In the meantime, is it possible to get into the carpool line earlier? I park and pick up Stephen (but I meet him outside), but I used to wait in the car line, and I had to get there 20-30 minutes early in order to NOT have to wait a long time to get Stephen. What an AWFUL situation, and poor Charlie!! He doesn’t deserve that.

    • Patty, I will certainly get there earlier in the future. I just worry about the time when something goes wrong or I’m running late and he’ll just be out there roasting.

      • The back parking lot is going to be closed for everybody. Over the summer the school was worked on they are adding on to the school and the back parking lot is for the teachers to park. The carline is so long because everybody wants to pick their child up. There is no changing the waiting time unless people put their kids on the bus. Maybe he could wait in the hallway instead of the heat. It’s not a power trip if the principal does it for 1 he has to do it for all. If you would be allowed to pick up in the back parking lot while construction is going on and something were to happen you could turn around and sue. It is inconvenient and aggravating but there are reasons people make the decisions they do. Even if we don’t understand them. He’s allowing you to park in the front handicap spot and you don’t want to do that because you still have to sit and wait for the cars to move. At least he’s not in the heat.

        • Jailen's Mom :) says:

          In Katy’s defense, she drove around the front to the handicap spot to park & wait for Charlie but guess what? Other cars were parked there!! People should really think before they speak. I’ve been dropping Jailen off & picking him up for 2 years in the back parking lot with no problems what so ever. When construction starts & other arrangements are necessary then we’ll go from there. There’s no point getting everyone all upset over nothing. This whole topic has been a bit ridiculous since the day it started. I’ll stop here.

  7. I’m so sorry you’re dealing with this crap. I would go in guns a’ blazin’ and get it taken care of…you’re right, you are NOT asking for special treatment for yourself, you just want Charlie’s medical plan to be followed and to get him taken care of the best way possible.

  8. Ugh… read my blog. Over & over… common sense often eludes some people. I will help you in any way I can. However, my suggestion is get any & all accommodations necessary in writing on the IEP. Compassion & common sense won’t cut it. It MUST be in writing. Therefore, they are legally obligated to follow it.
    And you have a leg to stand on when they do not.

    So, so sorry. I wish I could tell you it gets easier….

  9. ok, part of me really really really wants to side with Barbara & Lois. Part of me really wants to take the high road & be the better person. Really. Then there is the part of me that wants to go in guns blazing, family/lawyers/doctors in tow & with a copy of Wright’s Law dog eared in hand.
    My Little Man is not even in pre-school yet & this whole bus thing is my personal nightmare, for the same reason- my guy can’t regulate his temps all that great either. Have you heard of Single Dad? He would know what to do, I’m convinced the guy is a superhuman.

    • Love you, Carla, for shouting-out my point-of-view, but I don’t think being calm and assertive is a matter of moral high ground (high road & better person). Any more than the ‘guns-blazing’ persons are somewhat less. I do think that those who look around for a path that effectively achieves what is needed and does not mark oneself as combative have the most fortunate children. As the two comments that follow this one say, burning bridges is for leaving behind where you do not need to go again.

  10. Katy, Katy, Katy. You are between a rock and a hard place. I have always found that nice and pleasant goes farther than ass kicking when it comes to non lawyers, although I do love to take someone apart now and then, when they deserve it. But I am a lwayer (in fact, I am a judge, but I never say so on my own website, so don’t spill the beans) and sometimes a very nice and pleasant lawyer goes farther than anything else. I’ve seen this over and over in 17 years in my profession – the most effective attorneys are those who get along nicely with everyone. Bringing one of those lawyers, the type who asks questions instead of laying down the law – that seems the best course of action to me. She could say “tell me your ideas, Ms. Principal, on how not to violate Charlie’s medical plan standards so we can consider your ideas in light of your school’s enivronmental issues, which are actually only temporary.” And so on. And if that fails, well by all means, kick some ass, but since you’ll have these people in your life for a while, building together is so much stronger than tearing things apart. Yikes, and keep us posted. BTW, my daughter with CP/stroke melts down in the cold, I mean comes undone altogether, and we live in Utah. I hope this is a phase . . . meanwhile, could we have some more pictures of Charlie dressed and off to school, looking all little boy/young man-ish? Goodness how I loved seeing those!

    • All of my lawyer relatives would agree with you completely on this one–it’s why my personal philosophy is about honey and not guns. I’m just upset because this is not the first time this issue has been addressed. Sigh. Time to go looking for that honey pot. . . I know it’s somewhere.

  11. Will just echo “calm, kind yet assertive” . If only to save your own sanity as well as stretch the limited pool of goodwill you will encounter in the various systems you will be engaged with as a parent of a child with special needs. I’m sorry, but it won’t end until he is out of school. You will fight the same attitudes and ignorance over and over again. If you approach every battle (they will be numerous and ongoing) with “guns blazing” you will burn out quickly and this will have a negative effect on your mental health and the well-being of the whole family. Sorry to be a downer but this is my experience having worked with kids and parents of kids with special needs in the school system. Save the “guns” for when you’ve exhausted every option except a human rights complaint. Nothing gets people moving quickly like the threat of a lawsuit. (But the key is, you have to be prepared to go through with it. That’s why you save it for the BIG issues.)

  12. Hmm, I think I’d be dipping into the honey pot in the first meeting, but by now I might have to take the guns blazing approach. Not angry, just assertive.

    Well, probably pretty angry, if I’m honest. The situation is absurd. Not getting angry…that’ll be tough.

  13. “Gah” is right. I’m with Lois: I say go for the meeting, see what happens, THEN call in the big guns as necessary. Once you lay out the medical reasons, perhaps the principal will come around.

    It is so, so annoying how we sometimes have to go to battle over even the “DUH!” things our kids need.

    Oh, and the temperature control issue might be related to the cp. I remember when Max was born, they wouldn’t release him from the hospital till they made sure his body temperature was normal for several days in a row, and when I asked why they told me that kids with brain damage can have trouble regulating their body temperature. (At which point I was like, OH. MY. GOD., ANOTHER THING WE HAVE TO WORRY ABOUT?!).

    Max tends to get cold more then he tends to overheat.

    • Demanding is not the answer. Remember, you are going to be dealing with this school for a number of years. He’s only three – way to early to get a reputation as “that mother”. Keep your gun in your holster and ask for a meeting. Don ‘t go over the principal’s head until you have a discussion with him. I suggest you get to school a little earlier and get in the front of the carpool line. Good luck in finding a workable solution.

      • Alicia, maybe demanding is not the answer, but asking isn’t either. You can be nice when telling them what you need and giving them the reasons. I would also outline a time for the issue to be resolved because then everyone has a clear idea of when other action will be taken.

  14. This makes me angry. To me, it’s abundantly clear they should be making things easier/more accessible for you, not creating more problems. I think I’d be more likely to go in w/ guns blazing and at the ready. I’m infuriated for you, Katy. I’m sad this is even an issue. The heat down there is even hard for me to tolerate, and I’m just a regular person without special needs. To me, this is unacceptable. They are making you jump through hoops.

    No way. No more nice Katy.

  15. Why can’t the school district provide you with an air conditioned bus? I used to be a special ed teacher and had a few students who were not able to regulate their temperature so one of the things written into their IEP was an air conditioned bus when the temp outside was over 72 degrees. You can make the temp whatever Charlie’s temp needs happen to be. Good luck!

    • Amy, I really don’t know why they can’t provide an air conditioned bus. I think that maybe there isn’t one in our district or something. The whole thing is sort of baffling.

  16. UGH! It is so frustrating that you would have to “fight” for something like this! Shouldn’t the right thing be obvious in this situation? I say, kill them with kindness and if that doesn’t work, then take the further steps that you mentioned.

  17. As a special education teacher who’s worked primarily with medically fragile students, I feel your pain. A year ago I was working in a middle school and I couldn’t seem to get the principal to understand the medical issues of the students I was working with. I think he thought I was crazy.

    I know that for the students I worked with, it was in all of their IEPs that the buses they were on had to have air conditioning. I don’t know if that is possible in your state, but I would try to get it in there if you can. Sadly, you really need to get as much of this in writing in the IEP as possible for someone to follow it. Many people (as I’m sure you know) just don’t “get it.”

    I hope it all works out for you.

  18. Oh, and if you need to go over the principal’s head, you can try to contact whoever is in charge of Special Education in your district – possibly someone in the Superintendent’s office.

  19. Try to talk (nicely) with the Principal, but do find out who’s on the board and follow up with them if you have to. Best of luck. I don’t know why EVERY LITTLE THING in life has to be a fight! *hug*

  20. Perhaps an email to the principal outlining everything you need, what you have already been through, and how much you appreciate how the school is already helping, etc., etc. would save a meeting. If the principal is less than cooperative with what you need, maybe it is time to let him/her know that you will be bringing your advocate from the Disability Rights Center (1-800-960-7705) to the meeting with you. You will likely need no meeting.

  21. sigh! Well I am glad that you may be getting some changes done!
    Hugs to Charlie… and I agree with you there is NO way that I would be sending my little three year old on a bus… way too young!

  22. Katy, let us know what happens! This stuff makes me sooo mad. I thought it was bad for us… first they had him on a bus with a car seat, which was fine by me but the aide in the afternoon was like 80 and trying to pick up his wheelchair, obviously having a hard time with it. so we switched to a wheelchair bus (and I made sure they specified having a bus with working AC because LJ has over heating issues too where his skin gets really hot and red). The first day we were suppose to have the wheelchair bus, they never came to pick him up! I was soo ticked because while i know LJ wasn’t really AWARE that he was “forgotten” the fact that his feelings COULD have been hurt really ticked me off.
    I can’t believe Charlie goes to school for 7 hours!!!

    So far, I haven’t had to deal with the principal. But the front staff already know me. Our teacher has been amazing in dealing with the bus company for me and listening to my concerns and making sure stuff has been done about it. The only thing we have yet to see is a seating system. They seem to want to use the wheelchair, which doesn’t really let him have interactions with the other classmates.

    I’m super nice when I address my concerns but I’m firm. If I had a problem with the principal I would be talking to the director of the special ed department. They know us there too, lol.

  23. btw, 45 minutes outside to wait is waaaaaaaaaaayyyyyyy too long! And I would think dangerous. The paras in LJ’s class were talking about how 15 minutes is too long!! Idle hands!

    I also hated the idea of a bus but felt much better about it with an aide. Plus, I think LJ really likes the bus rides!

  24. LOL @ sugar and honey with gun in your purse! Love it! Personally, I have always found honey works better and the whole “we are all working together with the same goal, right?” approach. Then you are on a “team” and working to make Charlie’s experience and positive as possible and you aren’t playing the blame game. But when that doesn’t work, you gotta call in the big guns, girl.

    But I would certainly say that Charlie’s health is of greatest concern here. 45 minutes waiting in the hot for pick up??? That is ridiculous no matter WHO you are or what your special circumstance! I know that you will do whatever you have to do, Mama Bear, to make sure they do right by your Lil Man Cub! RAWR! Go get ’em, Katy…sweetly, of course!

    Let us know how it goes.

  25. Urng! No, No no no and no. I really don’t think the principal has thought that decision through–she’s probably only thinking of all the complaints she’ll get on why you guys are getting “special treatment” to park and go in and get your kids. But I gotta say, as a parent who sits 45 minutes in the pickup line in 100 degree heat and no air condition? That if I saw you park your car to go get Charlie, I would completely understand without really knowing his specific medical requirements. I mean REALLY. I hope everything turns out okay…without having to bring in your team of lawyers ; )

  26. Katy- Get all these things into your IEP. Do you have a Special Child Health Services Rep? (or anyone who can be your advocate at all of your meetings?) I’ve gone through way too many of these school, bus, IEP issues in the past 5 years. My boys each have a nurse with them on their bus- who is with them at all times during the day. I could very well understand and say you’re absolutely justified in your not wanting Charlie on the bus alone. When it comes time for my boys to lose nursing- (they had their trachs removed during the summer and that was their main purpose)- I will be driving them the 20 minutes to school and back. This is because of the horrible abusive attitude our bus driver and bus aide have- and in 5 years my school district still hasn’t had them replaced after all has been said and done. It’s a lawsuit in the making, but one that will come way too late.

    Anyway, it sounds as though Charlie has some sort of reactive airway disease- and when the air quality is poor he should NOT be hanging outside for more than 5 minutes. Get that into your IEP- call your doc for a “letter of medical necessity” which he/she can send to the principal AND the superintendent as well as anyone else who needs to be copied.

    My boys go to a special needs school but it’s paid for by my district which is our local grammar school. The principal and reps at the grammar school tend not to be very sympathetic and could care less about our obstacles- but the boys’ SN school always fights for us when they can.

    I’m so sorry you’re going through this. This is when you really get your rude awakening as to how self-centered people can be.