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Joined: Jul 2012
Posts: 761
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Joined: Jul 2012
Posts: 761 |
He's Autistic and needs a one on one care. So we don't really have a babysitter or childcare option for him unless my stepson would take a day off from work or it was on a day when my husband isn't working. Mk, this is a little off topic, but it might be worth while considering finding an adult friend or a college student who's willing to train as a sitter for you. We have long hired bright, able young adults as sitters-- yes, they are more expensive than regular sitters, but we train them to deal with all the Things that our household deals with (including food allergies and autism). We have found that it's actually important for safety to have someone around in the community who can take over for you if need be. I.e. if you ever had to take your spouse to the emergency room. Or whatever. Well worth the time and trouble. DeeDee, we do fortunately have two friends who are our case of emergency but things like these field trips would clash with their own kids' schedules. DS4.2 will be starting 1 time a week for 2 hours in a preschool class that's ran by our local high school ... for students interested in early childhood education just to give DS a chance to be in a classroom setting (we don't want him in the local public school special ed preschool nor the self contained autism class) and to give anyone interested in special needs kids a chance to get some experience ... and I am hoping (fingers crossed) that maybe he will click with one or two of the high school kids and we might be able to "groom" them into our occasional babysitters. There's always hope, right? 
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Joined: Apr 2014
Posts: 199
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Joined: Apr 2014
Posts: 199 |
As for pediatricians, let me know if you find one that is even of average IQ. I typically diagnose my kids (and myself) and go straight to the specialist. I would never trust a pediatrician to advise me on allergies (or anything else). We have met some wonderful specialists, and I'm sure there are some great pediatricians out there, but I haven't found them. DH thinks I'm nuts but the kids in my HS who became doctors were middling students at best - not kids that anyone ever referred to as "bright". We must have been lucky, because our pediatrician is definitely someone we trust. It was our pedi who alerted us to seriousness of allergies when we mentioned offhand during a visit for a different issue that we tried bananas for the first time and DS (8months at the time) threw up and had a mild reaction (hives on shoulders/chest), and he sat up and said "what? repeat that, please" and then firmly educated us on the seriousness of allergies and allergic reactions. We got very cautious with all new foods we introduced and avoided all bananas, but we are the lucky few parents whose child appear to have outgrown it (we got the all clear at 3 years old - as a result, DS refuses to touch a banana although he has developed a fondness for banana bread, go figure). And when he was talking to us about allergies, it was clear that he was up to date on the research and various, sometimes conflicting, information that are given to parents. Although he was surprised that bananas had triggered that reaction - and it is amazing how much baby food is centered around bananas. (and when DS had a seizure at 2, he was really a big part of helping us deal with that until we got the all clear from our neurologist after a series of very stressful visits - and he was the one who realized that my co-worker's daughter had a very, very early symptom of Type 1 diabetes - even the children's hospital staff were surprised that it was detected so early).
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Joined: Dec 2012
Posts: 2,035
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Joined: Dec 2012
Posts: 2,035 |
Personally I couldn't be bothered doing birthdays and I don't think anyone else can either. They have popcorn parties for special rewards where they get a handful of popcorn and 10 minutes extra play. The exception would be a fifth birthday at preschool because most kids here Finish preschool on their fifth birthday and start school the next day (or finish the day before and start school on their birthday). The friends kid was at a shared lunch at school as part of some event.
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Joined: Aug 2008
Posts: 748
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Joined: Aug 2008
Posts: 748 |
As a school admin, I can tell you for sure that there are some of us fighting the same fight with our teachers! I have several students with life threatening food allergies, as well as one with a feeding tube and nothing by mouth. The latter is a PG kid who has a degenerative muscle disorder. He has been on my Math Olympiad team for three years that I coach. His one request this year "can we please have an end of year celebration that does NOT involve food?" I was absolutely bent on making this happen- we had math games, non-food prizes and certificates etc. Several parents were so mad that I wouldn't allow any food into the room, period. They said that someday he will have to learn how to deal with parities and being left out. Unfortunately, he probably won't make it to that day  but I am so happy I was able to give him exactly the kind of end of the year celebration he could enjoy without being left out or feeling like he could only have half the fun. I am not saying this to brag, but to point out that it isn't just the food allergies- all sorts of kids have health issues that preclude them from celebration food from kids with allergies to diabetics to my math buddy with a feeding tube. They deserve a chance to party too!
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Joined: May 2012
Posts: 1,733
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Joined: May 2012
Posts: 1,733 |
Several parents were so mad that I wouldn't allow any food into the room, period. They said that someday he will have to learn how to deal with parities and being left out. ******** Seriously! The desire to stuff complete utter junk in their kids mouths is THAT compelling? THAT much more important? Really? Like they can't forgo junk food for an hour or two? Seriously? Shame on them - despicable people and downright awful examples to their children. Like that kid doesn't have enough obstacles and hardships. What a disgrace. BUT I love that you did this for him! We need more people like you.
Last edited by Mark Dlugosz; 06/08/14 11:57 AM. Reason: tone
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Joined: Feb 2012
Posts: 1,390
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OP
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Joined: Feb 2012
Posts: 1,390 |
Several parents were so mad that I wouldn't allow any food into the room, period. They said that someday he will have to learn how to deal with parities and being left out. Unfortunately, he probably won't make it to that day You are a very good person. I know about section 504 and confidentiality, and it would have been so, so hard for me not to tell them exactly your last line in that quote.
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Joined: May 2012
Posts: 1,733
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Joined: May 2012
Posts: 1,733 |
Irena, a standard accommodation (though, as you can probably see, it is really more of an accommodation that PARENTS make than schools) is that parents of kids who have life-threatening food allergies are ALWAYS permitted/required to accompany their children on field trips. Oh-- and that no, you are NOT responsible for other kids. I'm basically there as an Aide for my child. To the school that hasn't thought that one through-- You're welcome, by the way. It's me or a trained para/nurse. You choose. The child HAS to be with a person that s/he knows and trusts, and that person has to be trained to respond to anaphylaxis. Honestly, the places where things break down the fastest are in any breaks from regular routine.
Those are places to focus on failsafes upon failsafes when you write an IEP/504. DD has never been given over to the school's duty of care. Even for state testing, she has me nearby-- and is tested one-on-one. Our reasoning there is that ANY instance in which she WOULD be in the school's care is effectively out of the ordinary, and that she lacks the assertiveness with people she doesn't know well-- and that she is so rapidly incapacitated... Well, here: This plain-language chart describes what we're up against. I used to put in red any symptoms that we'd actually SEEN in our DD during reactions, but eventually quit doing that when there was much more red on that chart than black. DD may never be completely able to count on herself to self-administer rescue meds. The problem is that her blood pressure crashes and she is cognitively impaired first. SO mostly, we see symptoms on the right side of that chart, and have since she was three or four. Even physicians (and we) have trouble telling what's what in a timeline that matters. Someone who doesn't know DD very well (well enough to know what "normal" affect looks like, and perceptive and intelligent enough to see 'something is off') pretty much stands NO chance of making any difference in treating a reaction in a timely manner. I love that chart, btw. It's SUCH a useful tool-- symptoms from any two columns, > grade 1 = epinephrine and emergency room. Anything bold = epi and ER. It's great. Takes a lot of guesswork out of things. At least until you get into the far right-hand column. {sigh} Welcome to my life, incidentally.  Thanks HK. I am going to put this ("ALWAYS permitted to accompany my DS on field trips as an Aide for my child") in my son's iep. I can't believe it has taken me this long. Obviously, I have always been nervous, which is why I started having DS take his epi-pen with him on his person on field trips. But the entire trip I kept having visions of what could go wrong if some other parent had been chaperoning. Plus the teacher was such a dip... I really just did not feel comfortable with what I saw/experienced.
Last edited by Irena; 06/07/14 06:18 PM.
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Joined: Apr 2010
Posts: 2,498
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Joined: Apr 2010
Posts: 2,498 |
and I am hoping (fingers crossed) that maybe he will click with one or two of the high school kids and we might be able to "groom" them into our occasional babysitters. There's always hope, right? Yup. We have never found a high-schooler who could manage all the needs at our house (we need adults with strong nerves), but you never know...
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Joined: Feb 2011
Posts: 5,181
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Joined: Feb 2011
Posts: 5,181 |
CAMom-- what you do matters so much. I wish that I could clone you. My daughter never forgets people that make things easy when they could just as easily make them a misery. My daughter did in fact say to her NHS chapter (when they were dismissive of on-the-computer "community service" hours for qualification)-- would we SERIOUSLY want to turn down STEPHEN HAWKING because he can't go do a park clean-up day??She gets it. Living this has made her a firebrand for the civil rights of others. So that is one good thing. It's probably the combination of her life-threatening food allergies and being PG, but wow is she something when she sees people doing wrong that way. Like a force of nature.
Schrödinger's cat walks into a bar. And doesn't.
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Joined: Mar 2013
Posts: 156
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Joined: Mar 2013
Posts: 156 |
Thanks HK. I am going to put this ("ALWAYS permitted to accompany my DS on field trips as an Aide for my child") in my son's iep. I can't believe it has taken me this long. . Thanks from me, as well. I am also going to try to put it into my son's 504 plan. I think the school may push back, as I tried to get it in already without really pushing it, and they ignored me, and put something else about field trips, but I personally would feel better about the situation if I was there. I saw earlier this year just how fast anaphylaxis can happen for my son, and I'm not sure the chaperones would get it. Also, Irene's story about the epi not being there scares me to death as the last time my son had anaphylaxis he was eating something that "should" have been safe, but wasn't. I have been lucky enough to chaperone the field trips this year, and know how chaotic they can be, especially when the children are eating. Maybe if I make it clear that they don't have to count me as a chaperone, that would help. I think they don't want to be in the position of telling the teacher that they HAVE to make me a chaperone. (Even though, well, the teachers HAVE made me a chaperone, in every instance they can, for both children this year.
Last edited by momoftwins; 06/07/14 07:02 PM.
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