Fire Station Field Trip

I don’t usually take Parker on the field trips with his class.  Either he’s sick, just getting over being sick, the class has had something going around, or there’s a chance something’s might be going around.  Today I took a chance and took Parker on a Fire Station field trip

All of my kids have made this field trip.  It’s a Hodson rite of passage to have a picture taken with the giant Fireman’s hat on while sitting on the bumper of the fire truck.

How could Parker NOT have his opportunity too?

Lone Peak Fire Truck

I didn’t get a picture of Parker with that Firefighter’s hat on.  His sensory issues simply weren’t going to allow that.  He’s still got the whole issue of seeing a camera and insisting on looking the other way.  None of these make for great photo ops.

Parker was thrilled to see friends. Maybe a bit too thrilled.  I’m not sure how much he actually got out of this field trip because we were way too busy trying to keep him from flying away on the supersonic wings of sensory overload.

There were several kids with Down syndrome there along with those with other diagnoses.

And of course, I compared.

Yes, I know better.

No, I don’t know what the heck I was thinking.

In my defense I’m not even sure I realized I was doing it until after I got home.

Parker’s biggest obstacle is his lack of ability to communicate.  I won’t lie, I wish this kid could talk.  But he doesn’t and wishing isn’t going to make it happen.  So back to the drawing board I go to try and figure out how  include more language work.   More professional speech therapy would help, but at what that costs an hour, it simply isn’t in our realm of our reality.

I left this field trip feeling as though Parker is missing out on so much.  I’m not sure I can put a finger on what it all is, but it would be nice to see Parker interact better with his peers as well as participate in outside activities with more curiosity.

I need to get him out into the community more.  Even trips to WalMart would broaden his world at this point.  Parker’s growing up in an abstract world without the concrete follow up.

I felt pretty good about taking him to the Aquarium a few months ago.  Just once really wasn’t enough.  He needs to go enough times for what he’s seeing to become familiar to him.

You just can’t do drive by life experiences and hope they stick.

There has got to be a way I can maintain Parker’s health while still widening his circle of experience.

I’m open to suggestions.  You got any?

 

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. I have found it is much easier for my daughter to work with her peers that don’t have disabilities. She is in a 5th grade class for much of the extra things. She does math, and other core subjects outside of the classroom. She is pulled out for speech, OT, etc. So it doesn’t leave a ton of time with her peers but her peers protect her. She never struggles to have a dance partner as they are learning a few dances this year. A few years back we stopped a treatment and were given a death sentence of less than months. We took her home after having central lines removed and the only thing she really wanted to do was go back to school. Terrified me!!!! I had a long talk with her pediatrician and we understood that it may shorten her life IF/when she catches something from them. But this is what she wanted. She was in 2nd grade at the time. She could only tolerate being there a few hours and then I would have to go and get her. She is non-verbal, she does use signs (not proficient), and now uses a few different programs on an Ipad. Her peers know when she is happy, excited, sad, having a hard day and this is from a child who also has no facial expressions. It is because they have had the opportunity to learn who she is and learn to love her. It is the best decision we have made!! Yes, I have pulled her out a few times since then (H1N1), influenza outbreaks at the school, etc. But I know that she has been a happier child because of her “friends”. It didn’t come quick….but it did come. One of her favorite things to use with her friends is called quickvoice. I think it is either a free app or very cheap. It allows me to quickly record what she is excited about so she can share with anyone who will listen her fun thing for the day. Lately it has been that she has dance class on tuesday (yes I found an amazing special needs dance class!!!! :)) I know that my daughters and Parkers issues are different. My daughter doesn’t have as many sensory issues (mostly just noise sensitivities), but I have realized over the years that without me having been pushed to let her go to school I don’t know if I would have let her go. I still struggle from time to time with it (as she just went back to school yesterday after a 2 week break because of RSV which she most likely picked up from school). But I know she LOVES school! Good luck with everything! All we can each do is do what we feel is best for our own child. I learned long ago that judging doesn’t help anyone and what works for one person doesn’t for the next. Sometimes what we have done for them is spot on and other times looking back at the years I probably would do things differently.

  2. Suzy, THANK YOU so much for taking the time to share such a wonderful story of your experiences. I have a few ideas of things I plan on implementing. This summer I’d like to include Parker in, but still have a lot of thinking to do.

  3. Christine Deeths says:

    Tammy,

    I also made much the same decision as Suzy with my daughter. Her issues also are very different from Parkers. She does have some sensory issues and ADD, but most of her issues are medical. She is completely verbal….sometimes too much so. She is in a regular classroom with a 5O4 and no IEP at this point. This year she is in the first grade. I really struggled with sending her to public school, but most days I do not regret it. She is loving it.

    Her teacher and the school nurse are very protective of her. The school has gone above and beyond to keep her in the class room. I take her shaker VEST to school every day and the school nurse does treatments for her. She has had a PICC line and they have accomadated that and have let me come in and sit in the principals office and do her IV treatments for the last several weeks. The school has provided an eating coach for her since she does not sense hunger. I have fought very hard to not tube feed her and was really afraid of trusting someone else with her eating that she would have failure to thrive again, but she has not. The school has made sure that she meets at least her minumum calorie requirement each day, most days with the eating coach she actually exceeding it. She is because of peer pressure trying new food and that has really helped her to overcome much of her oral sensory defensive issues. I am finding the positive peer pressure as surprise blessing.

    Her classmates are very protective of her and make sure that they wash their hands to help keep her from getting sick. They make sure that she eats and that she takes all her pills. If the teacher does not notice it is time for her VEST she is usually reminded by multiple members of the class. The kids in her class make sure that she is not teased on the playground by other classes. They have been amazing. WHen she was in the hospital, they sent cards and a VIdeo to her. It really helped to cheer her up.

    We have had some bumps for sure, but this year in school has not been much worse than the prior years when she was homeschooled. She did get infuenza even after the flu shot and spent 9 days in the hospital and then something else a few weeks later and spent 17 day in the hospital. This is about what we usually do though. Her doctors have been very supportive of trying school and trying to keep her there when possible. I have a son 2 years older who also goes to public school and I think he brings things home to her….I am sure I do too, since I am a single mom and have to work outside the home to keep her insured.

    From the time she was a baby, I have really fought to keep her as normal as possible. We spent a lot of her first 3 years in the hospital. We have had several trips to the ICU and several times where she has nearly died, but it was very important to me that she be allowed to do anything she wanted to do. I really believe that God has a purpose for putting her here and that one of my jobs is to teach her to learn to thrive with her limitations.

    It is very important to me that she be defined by who she is, by who God wants her to be not by her very complicated disease complex. She is so much more than the sum of her anomalies. I want the world to see her as a little girl, not as a disease. (interestingly we have changed doctors over this issue…they only see her as a disease and something to experiment on since she is so unusual….I want them to see the little girl, with a mother and brother who love her(

    I have fought and fought hard to let her be normal. Like Suzy, I realize that my decision to send to to school, may have an impact on the lenght of her life, but ultimately I am not the one who sets her days in motion…I am not the one who determines how many breaths she will take, nor will I determine when the last one will be taken. God put her here for a devine purpose, He and HE alone knows what her life will hold and when it will end. Ultimately nothing I do will change the number of days he has ordained for her from before time began. I trust him fully and completely with her, I have surrendered her back to him because, he loves her far more than I. This surrender was not easy and as all things came with a cost. He has a perfect plan for her and I am blessed that I get to see it unfold.

    All that aside….if I could I would absolutely stay home with her and homeschool…I love homeschooling and feel like it is an amazing opportunity. Unfortunately because of the cost of medical care and our need for insurance I can not. FOr us in this season public school is what is best for us. I am sure that you will consider all the pluses and minuses and make the right decision not just for Parker but for you and your whole family. I have learned that often there is no right or wrong answer but simply what was best for now…and best for now can always be re-evaluated and refined.

    I am sure if you just keep Praying for Parker…..you will find the right answer.

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