Self-conscious about her trach.....

Hi Janet:

I'm sorry you guys have to go through this. Keoni never really noticed his "differences" till about 4 yo and at that age we were able to discuss the topic in depth. BUT he went to a pediatric daycare facility where there were other kids with trachs. Is there an opportunity in your area where she can be exposed to other trach kids? I think it would help to know she's not the only one. Maybe you can show her pics online of our kids. You have my email. I can send you links to our albums if you want.

Laryna

[sandra]

Wow! I'm sorry I don't have any advice. I'm not anywhere near that point yet. What a smart, observant little girl you have. It sounds like it would be nice if someone from these boards lived close to you so Nikki could see another child with a trach.

[Ann]

Wow, Miss McKenna is so smart and observant and what a personality. Â*You've got to love it! Â*I'm looking forward to meeting your spunky little red-head some day!

I agree with Laryna, if only she could spend time around other kids with trachs, that would really boost her self-esteem. Â*Looking at other trach kids' stories is also a great idea. Â*But, I understand why it would bother Mac to have kids staring at her. Â*My experience with this is with my oldest daughter, who is deaf and has a cochlear implant. Â*When she was five, we moved to St. Louis and she went to a school for deaf kids for 6 1/2 years. Â*She was around only other deaf kids, all with cochlear implants or hearing aids, so she never really "stood out" in the crowd. Â*It was so good for her self-esteem and has carried over now that Â*she is mainstreamed. Â*How much help is that to you . . . none, since we can't all move to the same city and put our kids in the same school together. Â*How great would that be!

You are doing a great job by just acknowledging that it is an issue for Mac and taking her cues as to what she is comfortable with. Â*Anytime you want to make a trip to Phoenix, Mac can spend some time with Jack and Sara. Â*That would be fun!

Â*
Ann

[Shari]

We were lucky in that Jacob had a large group of church friends that we had since his birth - some of the girls use to pretend that their dolls had trachs...one even had a scuba toy that she named "Jacob". Have you tried giving her dolls and toys trachs? Jacob loved his. It helped him through decannulation - he had a really tough time with that transition, so we let him work through it by taking his Pooh's trach out and suctioning him. Also, maybe some coloring books or story books - with their necks modified a bit. I wonder it there are any books out there with children that have trachs?
-Shari

[Stefan & Jennifer]

Well Janet, if it makes you feel any better....Jake's cousin Cassidy (no trach, just turned two) likes to walk around with one of our spare bulb syringes. She periodically sticks it into her bare neck and acts like she's sucking the coughed up phlegm from her non-existent trach.

She also likes to mimic Jake by sometimes putting her finger on her throat when she talks.

Also, the other day at the doctor's office, a little boy was playing with Jake at the table of toys in the waiting room. Within minutes he was mimicking Jake's breathing and sounded like a little Darth Vader himself (I thought he was going to hyerventilate, but then we got called into an exam room).

If you ever drive to Phoenix to visit Ann and Jack, let us know, 'cuz we're only 6 hours away and both my wife and I have friends in Phoenix, too. Maybe we could all have a day out with our neck breathers and make Mac a little less self-conscious?

[Triciasmom]

Patricia was 5 when she got her trach....there was a lot of adjusting with that. We have attempted to keep things like suctioning to places where it isn't so noticable (bathrooms, the car, etc). But we have never tried to hide the trach. With school, we faced it head on. We have worked with Patricia to teach her that when others stare, it is because they have never seen one, or because maybe they have! We always try to encourage the curiousity...so that she has the chance to explain how special she is. There have been times when she just YEARNS to be normal like the other kids, but she also knows we are doing all we can to make that happen. As with anything, kids who feel different will go through tough times. The trick as parents is to continue to encourage and love them unconditionally and DON"T treat them different. Don't let them hide or wallow in their self consious state. That only creates self centered kids.

When Patricia was trached, her baby MIssy was trached too....she is in the picture with her. Missy is her "mirror". Patricia has no association with other trached kids, other than at the hospital. Sometimes she even "forgets" she has it!


I hope you find a way to turn this awareness to a strength for little Mac.


Godspeed

Clare

[Olga]

Luckily Grcae never felt any different from other children. I did find that other children are more straightforward about asking questions though (sometimes you wish adults were as well). The other kids just used to say "what's that thing around her neck?" I used to tell them that it helped Grace to breathe as she couldn't breathe through her nose. The children always accepted this and soon forgot that Grace was "different". Also Grace didn't wear anything at all over her trachy - no HME or PMV, so it was less prominent.