LIVING

With EoE, Allergies, Asthma and a G-Tube

Making Friends, Accepting Differences

Being different is something I’ve always explained to my kids. Even before we were different. I’ve not only spoke to them about being different, but also about accepting differences.

In fact, when I spoke to Tinleigh’s kindergarten class about her allergies and feeding tube I used the words “being different, and it’s okay” as the main point.

So when I was told a story about Tinleigh asking the school nurse “What’s wrong with her?” I about fell over.

As you read in my last post, Tinleigh spends a lot of time in the nurses office. She gets to meet a lot of the kids at school. One day a little girl in a motorized wheel chair came in. Right in front of her Tinleigh says “What’s wrong with her?”. The nurse quickly shushed Tinleigh and said “Tinleigh, how would you feel if someone came in and asked me what was wrong with you?”. Tinleigh cupped her hands over her mouth and had an “oh my gosh what did I just say moment”. The nurse then introduced the other little girl to Tinleigh and asked the other little girl if she could explain to Tinleigh why she was in a wheel chair. Being non-verbal the other little girl shook her heard yes and smiled intently. The nurse explained to Tinleigh this special little girl isn’t able to walk or talk, but she understands everything people are saying around her. Her motorized chair helps her get around and she has a computer on her chair that helps her communicate. Once the nurse was done explaining to Tinleigh about the little girl Tinleigh stepped up to her, lifted her own shirt showing her, her feeing tube and said “This is what makes me special.”. The little girl held her hand out, Tinleigh placed her hand in hers and the two girls just smiled at each other. Instant friendship.

OH MY HEART!

I wish I would have been there to witness this moment. I was concerned at the start of this story that Tinleigh had forgotten she’s a little different as well. I don’t think Tinleigh intended to sound so rude, I think she was just more curious and didn’t know the correct way to ask. I am glad Tinleigh shared her something special.

I am so sorry to this little girl and her parents that Tinleigh was rude.

I am forever thankful for the nurse correcting Tinleigh and allowing those two little girls to have a moment.

The girls will continue to bump into each other in the nurses office throughout the year. I hope their bond grows stronger.10418453_10206402281322733_6302818484168056288_n

Advertisements

September 24, 2017 Posted by | daily life, LIVING, Tinleigh's allergies | , , , | Leave a comment

Operation Keep Tinleigh Safe

So just how are we keeping Tinleigh safe at school?20170909_121122

Last year at the end of the school year Tinleigh and I were lucky enough to go to the school together for two whole days and shadow a kindergarten class. It was so much fun. We learned different things that may hurt Tinleigh that we hadn’t thought of.

So here is our list of what needs to be done for Tinleigh.

  1. Tinleigh is allowed at anytime to say to any teacher “I don’t feel safe and I AM going to the Nurse’s office.” I wanted to let Tinleigh know that if she’s uncomfortable around anyone or anything that she has a safe place to go. Teachers don’t know Tinleigh yet and something may happen that may not cross their mind as being unsafe for Tinleigh.
  2. Tinleigh does not go to the lunch room except for the end of the day after it’s been cleaned. They serve breakfast in the morning so she can’t go there after drop off before the bell rings. She hangs out in the nurses office until the bell rings. During lunch Tinleigh goes back to the nurses office. Tinleigh doesn’t mind this at all. She loves helping the nurse with tasks and chatting with everyone working in the office. She’s become their daily entertainment.
  3. 20170915_212734Tinleigh’s lunch bag is left in the nurses office. It never gets the chance to be mixed  among the other lunch bags.
  4. After lunch every kindergartener must clean their hands before going to recess.
  5. Tinleigh has a special table in the art room that is wiped down before she enters. They also bought her, her own art supplies that no one else can touch. The art teachers nephew has EoE as well, she gets it.
  6. In computer class Tinleigh’s keyboard is wiped down and she has a specific one she sits at everytime.
  7. For both Gym and recess Tinleigh gets her belly wrapped with an ace bandage to protect her button from getting bumped or pulled out.
  8. Afternoon snack is on the playground. If a child chooses to eat their snack they sit in a special area. They must clean their hands before going to play.
  9. Tinleigh’s teacher contacts me if she ever has a question about letting Tinleigh use anything.
  10. Tinleigh never rides the bus. Nathan drops her off in the morning and I pick her up after school just like we’ve always done with the boys.
  11. In the classroom Tinleigh does not share her supplies with her table. She has a little carrier that she keeps her things in.
  12. Tinleigh wears her feeding tube backpack twice at school for an hour each time. The kids in her class know what it is and have learned not to touch her while she wears it.
  13. The first week of school I went into the class and read the Tubey book to the class. Tinleigh showed them her button and we allowed the kids to ask questions. I just explained how everyone is made different and this is a special way that Tinleigh is different. I love that age, they’re all so accepting to differences.
  14. Before school started the teachers were taught more on allergies and made aware there would be a child with airborne allergies coming to the school.
  15. She is never allowed to drink out of the drinking fountain.

20170821_150218I am somewhat comfortable with Tinleigh being in school. I have never seen a child so excited about her days. The day she got her first library book she came yelling down the car line “MOM, MOM, look! My first library book!” School is definitely Tinleigh’s thing. I am SO glad we made the decision to try and make it work for her. I feel we have some really good rules in place for her safety. Almost everyday I still fear I will get a phone call that something has happened. I still have the same fear with the boys. I don’t think it will ever go away.

I feel so fortunate that we have landed in one of the best school districts. If they weren’t so willing to really sit down and figure things out it never would have worked out. For that I will forever be grateful.

 

September 15, 2017 Posted by | LIVING, Tinleigh's allergies | , , , , , , , , , | 2 Comments

   

%d bloggers like this: