Starting school - kindergarten

[BOOS GRANDMA]

Hi.. My grandson Boo (Grandmas nickname for him) has CF ddF508, he just turned 5 in July and started kindergarten last week! This is a very exciting time for us, but also scary! He has been up and down last year, in hospital with pseudomonas, flu-bacteria infection, then latest end of June in hospital with bowel obstruction that was awful!!!, they told us he has DIOS can be common in kids with CF. He is active and just started a learn to skate/ice hockey class! Boo just loves this class it really has given him self confidence and something just for him that is positive and fun! I would like to get advise from everyone how you handled school, the staff, the issue that come up with CF. I think he will do well he just go glasses too so just a big adjustment for him. A big adjustment for me!! My daughter and her husband are doing a great job with him, and the went talked to school seems like they try to work with them but she was really worried and stressed over all the issue that can come up! He has been in school for one week now, he loves it! But he missed today because he got a wicked sinus infection already.. I know we can do this! But I cannot help but worry and would love advise in school and CF!! thank you!

 

[c410berry]

Hi Carol. I have no brilliant advice, but just wanted to mention that my daughter Brooke is also 5 and just started kindergarten. She also has CF (ddF508). This is such an exciting time for the kids. I don't look forward to the germ sharing, but I do love hearing about all she's learning and doing each day. -Christy

 

[MOM247]

Hi there,


My son just turned #6, and is staring full day Kindergarten next week. My son did 2 years at public-elementary based pre-school. So, I've had a few years dealing with the public school system. I found Lisa Greens 504 planning website awesome! I used much of her tips writing my sons IEP.


1. Enzymes are delivered to my son at the cafeteria, not at the nurses office. The nurses office is where "sick kids" are, and what he needs to avoid.


2. The class washes hands or uses hand sanitizer when entering the classroom. His class is on the 2nd floor, and I thought it important he washes his hand after using the rail. Crazy Mom thing!


3. My son is allowed extra time to finish lunch, and I reserve the right to ask for him to have am/pm snack time. If he looses weight.


4. Teachers are warned ahead of time of possible hospital time and they will prepare homework. If he is out longer than a week, tutors will be offered if we need it.


5. PE teachers are informed on his IEP, he may need breaks if he needs it. He gets to carry a water bottle in all his glasses.


6. No other CF kids in his class.


I'd tell your daughter to hand out the pamphlet "CF in the Classroom". CF Clinic should have them. It's small but has allot of info for teachers. Pray & Purrel. Here's to a happy-healthy school year


sarah


mommy to Johnny 6 w/cf Bailey 3/no cf


PS


any advise on driving away on the 1st day Full Day scares me Johnny's been my full time best friend for the last 6 years. I'm sick w-letting him go, but its the best thing for him. Change is hard!!

 

[ashamalie]

My son will be 6 in October, he just started full day Kindergarten as well. One of the things we did when he started Pre-K, was we wrote a letter to the teacher, outlining a few things we felt important for her to know, even though he was only there for 3 hours. We do have a small school, so the children in the nurses office aren't such a big deal. I think the hardest thing to remember is that we want them to be treated like the other children, but we want to protect them so much that we also want them "sheltered" for lack of a better term. Our experience this year has been his teacher doesn't show the same interest in it as his pre-k did. I know he's the only child in the school system with CF. Just remember to breathe, take things in stride - yet remain proactive, and coordinate with the school as best you can. And sometimes it's okay to just sit and freak out.

 

[Ratatosk]

We used the Letter to teachers from Lisa Greene's page ---
http://www.happyheartfamilies.com/TipsForCFParents.html Which the school used as the basis for DS' 504 plan. Also sent along some info from the CFF regarding enzymes, CF in the schools... As well as the CFRI Guide mentioned above. Basically we meet with the teacher and some staff at the beginning of the year to see if there are questions. Reiterate that ds is a normal child and really has no restrictions -- just needs enzymes before eating, needs to keep a distance from the other cf child in the school (2 grades younger), bathroom breaks when necessary. He eats school lunch, plays outside at recess, participates in gym...

 

[BOOS GRANDMA]

As a Grandma , first I want to Thank you! I love watching my daughter being a Mom! Being a Mommy of a little boy with CF and all the challenges that come with CF is hard, but I am also amazed with all the love and joy I get to experience on a daily basis! To all of the Moms/Mommies you all are amazing! Strong, brave, and always there for your families! (L) the children with CF are Super Hero's bounce back just like ... Superman, Faster than a speeding bullet, more powerful than a locomotive able to leap tall buildings in a single bound. My grandson is doing awesome in school and the teacher, school nurse have been great. They talk to my daughter almost everyday via email or phone call. Plus she can call at anytime just to get a update! They have given them the pamphlet on CF to all the staff the will come in contact with Boo and have the 504 in place!! Sending prayers to you all and our kiddos!! Thank you for letting me freak out and vent!!

 

[BOOS GRANDMA]

Thank you ... love Lisa Greene's website!! I sent to my daughter today!!

 

[AleksandraKaczynska]

Hi my daughter is turning 6 in a months time ane is tarting 1 grade this monday.
Last year she went to a pre-school class at the same schoool.
This helps alot - the same staff, bathroom, most kids and parents, same dinners and so on.
I to wrote a letter to the teacher - this year also (they hang it up in teachers room for other to read also) - the teacher changes when going to 1 grade. She will be with Asia for the next 6 years - so I met her last week, gave her any information on cf I had that was meant and prepared for teachers by our cf - funds, also I gave her books to read to kids about hand washing, cf kids and handicapped kids. All meant for kids this age.
I did the same at preschool class.
I will also have a talk with parents and hand our leaflets - nothing long and fancy. Just that cf if genetic, it's no threat to them but their kids cold and small infections can make Asia's life short and full of hospitals. That I cannot stop the process but I can try to slow it down and that I ask them for help in this. Then I add that the average life time with cf in Poland at the moment is 27. Most people took it in - far down enough not to send kids sick to school and stand for me if they saw something wrong with other kids - Asi'a class was the healthiest in school and all kids had less infections and even one girl ( she has allergies) benefited from the health information I gave her mom and also turned out to be helthy and had just one serius infection.
I hope this will work this year also
as for washing hands and so on - I give Asia her own towel - each day a new clean one and she has her own soap - even in school grades - it's no problem
also I give her toilet covers to use while using the bathroom - she acctually does use them
The kitchen staff knows about Asia and always made sure to give her extra food and salt - they are the same this year
and I do not let Asia stay in after class. I take her home.
After school I give her claen clothes and do sinus rinses just in case. She had sinus problems last year - from a family kid from kindergarden) and after that her sinuse where very delicate. One sinus rinse after school workedfor us to keep colds away.
The only bad experience I had this year was while talking to Asia's new teacher - the school's psychologist came and started to talk things not exactly smart - but they all turned out to be cause of her lack of knowledge. Unfortunately she started to act smart - cause she has one girl w with cf (there is a second girl in our school) - but she had no idea about cf - she even asked me what exactly does cf lead to...... well.. Asia's teacher acted at this point very nicely and new exactly what to think about the question and the person asking. I believe I will not have to deal with this "specialist teacher" again - if so - we ended our talk nicely but still she propobly got the information in that she should learn more if she wants to help Asia or the other girl. I think she finaly understood what the other girl is dealing with - she is in bad health and her parent do not talk about this to the staff at all. She usually is at home as she has home-teaching. She was very surprised to hear that Asia is under care of the cf team with a physcolgist also and that they all though it good for Asia to start school at age of 6 not 7 _ we can choose this year - so next year it willl be double classes cause most parents choose not to.
I find that most important is to have the cafeteria, cleaning staff know your little cf and care for her, and also "help" teachers ( we have one in the beging classes) and most off all the school's director and her secretary (very important ) and the class teacher .... and parents. I always try to take what they say as a sign of their worry and good will and somehow it works for us. We'll see what comes up this year
But in all - school is just what my kid loves

 

[Jeannie85]

I'm sending my daughter to 4K this fall and have to enroll her coming up in a week. She wants to go and loves the idea of it but I am hesitant. I know I can't keep her in a bubble but she has been at home full time with me her whole life. Never been sick. Never any antibiotics for anything. Most people with kids say as soon as their kids started school they were sick all the time. I'm nervous that this will be the case. I've been diligent with teaching her good hand hygiene and all that. Does starting school have to mean automatically getting sick? I know kids will get sicknesses but she's been healthy.....any thoughts, tips, stories? (We have a 504 plan from our clinic)

 

[Rebjane]

Hi Jeannie85,

Sending your child to school for the first time, CF or no CF can make a mom worry. I think it is fantastic your daughter's health has been excellent so far. It is likely she will catch more colds etc when exposed to other kids but you weigh risk vs, benefit. For most kids, kindergarten is fun! It's playing and sharing, and learning about other people. Being active and happy in school is important to a child's emotional health(it's not all about physical health).

Having a 504 plan is important. Preventative care, education for the school nurse and teachers and working together with the school in advance with open communication will help. Important things like good handwashing,even sending in Purell and clorox wipes to wipe down the table may ease your mind. Making sure your child gets a flu shot and having the school nurse encourage the staff around your daughter to do the same. Having her own water bottle, snacks when needed, unlimited access to the bathroom, too.

My daughter is in 8th grade now, in public school. Some years are better than others but she has good friends and her teachers love her. Every year I make an appointment with her new teacher before school stars and give them a CFF booklet about CF. I give them a full rundown about CF. My last comment is always the same: "In the end treat her like any other child in your class." Your child may just rise to the occassion.

One more thing; most people do not know or are very surprised that CF kids should not be in the same class(6 foot rule) and that you need to know if there is another kid with Cf in the school(not there name or anything but just have the school nurse help figure out a way to manage to keep the apart and safe and healthy).

Also, if it does not work out; you can always homeschool

 

[Ratatosk]

DS was in daycare/preschool; however, for us kindergarten was terrifying. We KNEW the daycare policies were enforced regarding sick kids, we knew they sanitized toys, surfaces, instilled good rules regarding hand washing, keeping ones hands to themselves.... So we worried ds was going to be exposed to sick kids, germs... While we always get our flu shots, turns out the year he began school, H1N1 (swine flu) was running rampant and there were vaccine shortages. It helped that EVERYONE was concerned and the school really cracked down on enforcing their sick policies. The teacher also sent out reminders to parents not to dose their kids with fever reducers and send them off to school -- around lunchtime kids would suddenly get sick -- that there were kids, not just DS with CF with health issues that were put into jeopardy. Kindergarten is also great for teaching kids who may not have ever been introduced to other kids before about keeping their hands to themselves. They learn not to touch everything, everybody....

Today DS is in 7th grade. We haven't had meetings with teachers the past couple years, though I still submit all the info to the school nurse, which she forwards on to the teachers. He is also able to carry his own enzymes in middle school, which limits his exposure to sick kids in the office/nurse's office. I'm not so sure his teachers this year even know he has CF. We did have a meeting mid-year last year with several teachers when a school counselor thought he might benefit from some sort of group meeting/class with other kids with health issues because kids with health issues apparently have behavioral/mental health issues that may manifest negatively. For ds and us, CF is just a part of life. It's all ds knows and he doesn't think he's different from any of his classmates. So needless to say we had to have a come to Jesus meeting and explain that just because he had a physical disease didn't mean he had mental disabilities. If anything DS is a smart cookie, advanced reading and math levels...

As I mentioned previously: We used the Letter to teachers from Lisa Greene's page ---
http://www.happyheartfamilies.com/TipsForCFParents.html Which the school used as the basis for DS' 504 plan. Also sent along some info from the CFF regarding enzymes, CF in the schools... As well as the CFRI Guide mentioned above. Basically we met with the teacher and some staff at the beginning of the year to see if there are questions. Reiterate that ds is a normal child and really has no restrictions -- just needs enzymes before eating, needs to keep a distance from the other cf child in the school (2 grades younger), bathroom breaks when necessary. He eats school lunch, plays outside at recess, participates in gym...

 

[Ratatosk]

Oh, and as far as getting sick.... DS was probably one of the healthiest kids in daycare and in kindergarten. He missed half a day because he ate a huge cupcake during a birthday party at school and barfed. Sick policies require immediate dismissal when vomiting is involved. 1st, 5th and 7th grades missed 5 days due to mid winter vacation -- no sick days. He did get a stomach bug the start of 3rd grade and missed a couple days and 5 days of vacation. Perfect attendances grades 2, 4 and 6.

 

[MissAlexsBP]

Hello!

It sounds like you all are off to a great start by letting him be a kid and educating the school and his teachers

In elementary-high school I had an IEP set up with the school which allowed me to eat and use the bathroom whenever needed as well as have my enzymes and inhaler on my person; not with the nurse. I went through surgeries and hospitalizations and it was set up so I was allowed to continue my school work while in the hospital so I did not fall behind. I was also very open with my CF from a young age so my classmates knew I had CF, which helped me, at least.

(Thinking way ahead -- ) In college I had a 504 Plan, which ensured I could continue with any work needed (for surgeries or hospitalizations) as well as have a single room my first year (I later found 3 of my now best friends who lived with me for the next 3 years ) The first day of each class I had a note from the Student Disabilities Center (we had arranged for my Doctor to write a note and I met with the Director of Student Disabilities before every semester) stating I had a 504 and the professor could reach out to the Student Disabilities Center for any questions. Again, I was open with my CF and flat out told my professors I had CF and I didn't expect any extenuating circumstances, but if in the event I did have any, here is why... I also did home IVs during finals and my professors were fine with it.

If you have any questions, don't hesitate to ask!

 

[Jeannie85]

I would totally be nervous and worry about my daughter even if she didn't have cf. I'm just a worrier, always have been. I met the principal, and 4K, and kindergarten teacher on saturday. They were very nice and made me feel good about choosing their school for her.