Letter for Preschool

[rosesixtyfive]

Okay, would anyone mind to take a look at this and let me know if you have any suggestions?

Dear Parents,

Our little boy Samuel will be in your child’s classroom. Samuel suffers from an illness known as cystic fibrosis. Cystic fibrosis is a disease that affects the lung and pancreas of 30,000 children and adults in the United States. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that

● clogs the lungs and leads to life-threatening lung infections, and
● obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Samuel is doing exceptionally well. He is just like any other little boy. He loves to get dirty, collect Star Wars action figures, and go to Dollywood. We treat Samuel like any other kid, but still do our best to protect his health.

While Samuel will be just like any other preschooler, we would like to keep him away from illnesses as much as possible. Colds and viruses can make Samuel more susceptible to lung infections which could result in serious illnesses, hospital visits, and rounds of IV antibiotics. If he gets a cold, it is not the end of the world, but if he gets hit enough times with nasty bugs, it could make him weak and allow his disease to gain a foothold. So, as you can see, good health practices to prevent the spread of colds and viruses are very important. If your child is coughing or has a runny nose or has any other visible signs of illness, please consider Samuel when making the decision to send him or her to school.
We love the support we have received from our community and are so excited Sam will be making friends this year. These preschoolers will grow up together, and they’ll always know about cystic fibrosis and how hard our little guy has had to fight.

Thank you for taking the time to read this. Please feel free to talk to Miss Jenn if you have any questions about Samuel’s needs.

Best wishes for a healthy, happy school year.

Sincerely,

Samuel’s Mom and Dad

 

[kitomd21]

Nice - I hadn't thought of giving the parents a letter. We are meeting with DD's teachers to discuss her care but a letter to the parents further helps the process! I would add that your son may cough at times but not to let their child be unnecessarily concerned that he's contagious.

 

[ymikhale]

when my dd started preschool last year, the school director came into the class on the first day and, without mentionning my dd's name, asked for about the same thing. Based on what my teacher said during the school year, most people did their best to respect this request, with one generfal exception: those who had no nanny or other family member to look after their kid, consistently sent their kid to school regardle

 

[Mommafirst]

I said something very similar to this at the parent orientation when my daughter went to preschool, rather than send a letter. It was very well received and the other parents were mostly respectful about sending sick kids to school.

 

[philadelphiajerry]

My wife and I had one in pre school last year. We sent a letter to the teacher, simply explaining enzymes and how well Sean was doing and how he has no restrictions and is in no way different than any other child. We stressed that possibly he be allowed to use the bathroom even during non designated bathroom times, although we doubted this would be an issue (it wasn't). We asked that maybe his seat be switched if the teacher happened to notice a particularly sick or germy person next to him. We essentially left it at that. I don't think you can bring CF into other people's lives to this extent. And there is also no reason for every child in the room to know that your child has CF. It will be up to your child to tell those he/she chooses to tell when he is old enough.

 

[KHoyle]

Hello,

Since Cystic Fibrosis is technically a disability, your child is covered under Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. As such, you should request that an Individualized Education Plan (IEP) be developed for your child. This actually gives you a bit of power as a parent to mandate that your child's needs are met. Rather than a teacher saying, "I will try to keep him away from other kids who are sick....", you have the right to say, "By law you are mandated to keep my child away from sick kids." Not that you want to say that, but once you have the law on your side it makes it a lot bigger issue for the teachers and they trend to pay more attention to your requests.

We had an IEP developed for our daughter in kindergarten and we reviewed it at the beginning of every year with the principal, teachers and guidance. The schools have been wonderful at meeting her needs. We are planning to meet with the school this year as she enters high school.

One other thing we did as parents, particularly in her early years of school, was to purchase a UV Air Purifier that would continuously run and purify the air in her classroom. We purchased a unit that was sufficient to turn the air over quite a bit in the class room and with the UV it kills all the airborne bacteria. At the beginning of each year we would change the filters and bring the air purifier into the school. We would put the unit in place in her class room strategically close to where our daughter's desk would be. Yes, it made a little noise, but it was not noticeable except when the call was very quiet.

The air purifier was very well received and we believe it kept our daughter healthy. We heard that the teachers in the school wanted to have our daughter in their class because they would get the purifier and have less sick kids. We also heard that some parents had requested to have their kids in the same classroom as our daughter, because they knew that their kids would be less sick.

 

[CrisDopher]

It's a nice letter, but I have my doubts about how well it will be received. Maybe it's just how I grew up, but I seriously doubt any of the other parents give a crap about your kid. If you can say something to a whole group of them in person at a PTA meeting or whatever, it carries a lot more weight, I think, than a letter. Not once have I ever heard of a case where a child with a few sniffles, but that was generally well enough to go to school, was held home because of the danger he or she may have posed to other children at school. Generally, if a child isn't well enough to go to school, THEN they don't go to school. Or they do - but the school nurse intervenes and sends them home. I HAVE seen kids get sent home against the parents' will ("oh, who's going to babysit? wahhhh!").

Seems like you might get more action getting the school administration on your side with a short meet-and-greet, some cookies, and a 504 plan.

Besides, your child does have an immune system, you know. Samuel needs the same colds other kids get, to build immunity. I'm not saying to throw him in with the chicken pox crowd, but his immune system has to learn what it has to learn to keep him from becoming a sickly adult.

Good luck.

 

[welshwitch]

I think it's important for the teacher to know what's going on, but I think letting all the parents know is overkill. Mostly because I think your child will want to let people know about his/her CF when the time is right. It was a really sensitive issue for me as a kid who knew about my CF and it was really empowering for me to let people know on my own terms, and not be singled out as the "sick kid."

 

[AshleysMom]

KHoyle do you know what kind of UV Air Purifier that you had? Did you only change the filter once a year? Our CF daughter will be entering 2nd grade and I really like that idea. She has also had a 504 plan since she began Kindergarten and it's been wonderful.

 

[Allansarmy]

Hello rosesixtyfive, I have mixed emotions about your letter. Preschool I think its acceptable. However, in my opinion it should not extend beyond elementary. Personally we give a letter to the nurse about our son (he is 16 now, diagnosed at 4 months old). The letter is fairly generic about the disease and what his accommodations should be. Our school nurses have been great about it. Even letting my son keep his enzymes in his pocket for meals so he doesn't have to make that trip to the nurse to get his meds and miss out on 15 minutes of lunch time.

Where we had a problem with in the 10th grade was with a few of the teachers. Even after a letter from the CF clinic and a speech from the nurse. They still did not accommodate my son. Meaning not letting him use the restroom, putting him out in the hall when he coughs etc. I was livid! Spoke to our CF clinic and they said its against the law to do that to my son. So I had the CF clinic signed by the doctor along with myself threaten to take legal action. They straightened up a little. But my son came to me and had a man to man talk. Its hard to write here so bare with me please. Basically the talk went like this "Dad, I hate having CF" me "I know son", him "Dad, I know you meant well with the letters but now I am singled out" "I hate having everyone know my business and my disease", "I wanted to tell who I wanted, I did not want the whole class to know and I feel embarrassed" That really hit home. I then realized that my little boy was not a little boy any more. He was growing up. I asked him what he wanted to do. He said I want to quit school, I hate when people look at me and the bigger kids harass me. Once again, a Dad or Mom I am sure feel helpless in this situation. You want to fight for you son, take on the bullies. But ultimately you can't. I told my son that quitting school and not getting a diploma was not an option.

To be honest, I got tired of fighting here. My son convinced me that he did NOT want us to sue the school, he did not want the attention. In the end we found a home based school that my son absolutely loves! I have teacher friends that help with certain subjects and the funny thing is, he is doing better now with the subjects at home than he ever did at school. He is more compliant with his treatments and doesn't have to worry about kids pointing at him or skooting their desks away for fear of "catching CF".

To end this reply, I would love to say that we just signed my son out of public High School for good and left without a word. But that wouldn't be true. I like many of you couldn't just leave it at that. I left a nice parting shot at the school, principal, and a few of the teachers first in a nicely written but condescending letter. Hey I am not completely stupid here. Freedom of speech right lol

 

[LisaGreene]

This is a great letter if you choose to send it and there are alot of good comments here about the pros and cons. This is really going to be an individual decision for your family that's an important one. This will carry over and "label" your child, if you stay with these same children, for many years. That might not be a bad thing but just be aware as others have already said.

It MIGHT be better to have the letter come from the teacher and not naming your child's name but something along the lines of: We have a child in our class with cystic fibrosis which is .... Our school policy for sickness is .... We will be strictly enforcing this policy....
I think you might get better results with this approach. Parents will probably be curious and might even figure it out but at least you are buying yourself some time before you "come out." ;-)

Now, that being said, when your child goes into elementary school, it will be important for you to be more proactive in educating your child's peers due to teasing issues as well as helping them understand the differences in dietary requirements (you'll see the kids start to criticize your child's hi fat, hi cal food choices and even some adults will without the proper education about CF).

So, I am an advocate of doing in-class training of the children and THEN you can send a letter to the parents so that they know what went on in the classroom (to avoid miscommunication and inaccurate info from googling cf). I have written extensively about this on my site www.TipsForCFParent.com under "school issues". I would NOT do this type of training for preschoolers, they won't understand it anyways, but starting at around age 5 is okay, 1st grade is really a great time (age 6). Link to article, audio recording and tools to teach school children about CF: http://www.happyheartfamilies.com/articles/article/6447390/109107.htm

Of course along with this, we also need to teach our children, including sibs, about cf including the scary parts. The last thing we want is for our kids to learn about life expectency from a nasty kid on the playground-and it happens (heart breaking). Here is a link about this as well: http://www.happyheartfamilies.com/articles/article/6447390/109105.htm AND a link on HOW to teach children about CF: http://www.happyheartfamilies.com/CFChildCommunication.html

Lastly, I am not 100% sure on this, but I don't think preschools are required to comply with federal laws about disabilities so I don't think 504's apply here. Of course once children go into grade school, this changes and I've written about this extensively here: http://www.happyheartfamilies.com/SchoolIssues.html

Good luck with your decision (let us know how it goes!) and again, your letter is excellent if you choose to send it. Hugs and Hope! Lisa

 

[LisaGreene]

Wow Allansarmy, you had quite an experience with your son. Thanks for sharing it with us. It is so sad that this happens but you are not the only one that I hear stories like this from. We had a similar experience with our son w CF in 7th grade with the teachers, although not nearly as bad and they were even aware of his 504 plan. I was ready to go to the school but I talked it through with my son and he asked me not to, to let him handle it. We agreed that if it didn't work itself out, that I would talk with the school. I didn't need to and things worked out on their own. We'll see how it goes in the future but, at least so far, my son seems to want to handle this himself. It is SO HARD to let go, isn't it? Parenting is not for the faint-hearted....

 

[JENNYC]

Wow Allansarmy that is awful!!! It's terrible that people and teachers would be so cruel to such an already awful situation!!! Makes you wonder what on earth these people are thinking? I am glad to hear that our clinic docs stuck up for you though, that makes me feel a little better. Here lately my faith has been a little shaken with Dr. O but hopefully we will iron that out at our next clinic visit . I hope your son can put that awful experience behind him. I'm not sure what I would do in a situation like that, you were in between a rock and a hard spot. My daughter is going into 2nd grade this year and I had to front out one of the 2nd grade teachers about her bringing her dog to school as a class pet last year because of my son who does not have CF but has horrible allergies and guess what was allergic to dogs. The principal called a meeting with me and had all this stuff highlighted and printed out on her desk about CF. I was in shock when she started trying to tell me about CF and allergies and dogs!! I saw about 10 different kinds of red! I promptly corrected her and told her my son along with everyone else besides my daughter did not have CF. But I'm sure a lot of them had the same dog allergy as my son, and I was tired of him coming home sick, when the school policy clearly states no pets at school. I know no where near your problem, I just hope this teacher does not take it out on Abby that I made her quit bringing her dog to school I guess we will see.