Being medically fragile is what led me to home school Parker.
What sealed the deal was to discover what our local public school system had to offer a typical kid with Down syndrome as far as an actual education goes. Utah isn’t known for it’s attention to kids with special learning needs. Just sayin’.
One classroom. One teacher. (I’m not saying the teachers aren’t great. I’m speaking of the situation in general.)  A couple of aides most likely recently pulled off the street with little training. Many age levels. And many a diagnosis.
I believed that Parker deserved more.
Could do more.
But this all leaves me with a bit of a dilemma.
How do you bring the world to your kid, when your kid can’t go into the world?
Here are a few of ideas I’ve employed:
- Books
I can’t begin to list all the things I’ve taught myself simply by reading a book. Or all the places I’ve been able to visit through the glossy pages of a beloved opus.
- YouTube
- DVDs Especially when played on the computer.
- Get ‘em out and into nature.
- Field trips to:
The Pumpkin Patch
Cabella’s fish and stuffed animals (Call to see when their slowest day/times are)
The Zoo (most of the exhibits are outside)
A neighbor’s farm
I’ve been the recipient of a LOT of flack as to how we keep Parker locked up so much. Some is done as teasing. The rest isn’t.
This is the thing. Parker’s first heart cath showed pressures of 117. We were told (after the fact) that nobody expected Parker to make it through his first year of life. I remember Parker’s Cardiologist telling me that if Parker got RSV that year, and it killed him, not to feel guilty. Because there was no way he could survive it.
Right before we trached Parker, we were told that this is the point where many families chose to allow their child to pass peacefully away.
We weren’t ready for that, and chose the trach and the vent and have been so grateful that these two options were available to us.
Yup, Parker spent the first three and a half years of his life in his safe room. Was it hard. Absolutely. But is he still here because of that sacrifice? We think so.
It’s been an often hard and discouraging 6 years at the Hodson house. It’s been a sacrifice for our whole family, not just for me.
My goal all along was to keep Parker healthy enough while we discovered the pieces to his puzzle that caused his PH levels to always be so high.
Healthy enough to allow those lungs to grow and take over some work that the diseased parts of his lungs can’t.
This means that we don’t take Parker to Christmas parties, Church, or any other activities where a lot of people are involved. He doesn’t go to the Mall to sit on Santa’s lap.
You should see the amount of hand sanitizing wipes I go through when we have a doctor’s appointment. And, nope. He doesn’t play with any toys in the waiting rooms either.
Taking Parker to the mall this summer to get new shoes was huge for me. We let him hang out with some neighborhood kids on the 4th of July. He even knocked on a few doors this Halloween.
This spring I have more field trips planned. Especially since he seems to be getting so much stronger.
In my mind’s eye, Parker is healthier because I have been so adamant in keeping him what others have described as locked up.
I’ve worked hard to bring the world to Parker.   This Christmas Parker’s main gift is a sled. One that he can ride in as I pull all over the neighborhood. A new way to broaden his experiences in the world around him.
Different parents make different choices. Some parents would have chosen to let Parker gently pass away. Others would have sent him to school, and brought him to any and all activities to which they had been invited.
There isn’t a right or wrong here. Just what is best for your child and your family. These decisions are personal and should be treated with respect.
What about you? What are some decisions you’ve made for YOUR child that others have given you grief over?
Sleepovers. I have a 3rd grader who doesn’t go to sleepover parties because she isn’t stable enough in her bipolar moods. And for my second daughter who is incontinent, no gymnastic team yet. She just can’t do the long meets and other things required. I know what you mean about having to make the tough choices. We make them every day. But my heart and prayers are with you and your family as you face much more health-intensive issues.
I know you must be busy, but I would love to have your story as part of my new book. Especially after what you shared in this post. Would you consider filling in my short survey? Thanks so much! Blessings to you and your little man.
-Laurie
http://livingpower.blogspot.com/p/share-your-story-in-my-new-book.html
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Twitter: kadiera
says:
Oh Tammy….the list is so long.
We have gotten crap over just *having* a trach – if we’d waited it out in the hospital, maybe he wouldn’t have needed it (boy I wish I had their crystal ball)
We’ve gotten grief over keeping him home – over not going to the special ed early intervention program at school, over not taking him to playdates, over not going to some family gatherings, over not sending photos with Santa and the Easter Bunny (and holy cow, if people are complaining about the TSA not changing gloves between searching travellers, what about Santa at the mall? hours in line, plus on a lap that how many others have sat on, drooled on, sneezed on….)
We’ve gotten grief about taking Alex out too – gymboree this summer was obviously a horrible choice, since we wouldn’t let him go to school this fall during flu season. Because they’re not at all different, you know?
We’ve gotten grief about both my husband and I continuing to work – but it’s this, or depend only on Medicaid, and having seen how that goes for many people, there’s no freakin way if I can help it.
We’ve taken hits from the family about getting Alex an AFO. We’ve taken hits for putting him ahead of other family members (particularly when he’s been in the hospital). We’ve had complaints from family about cloth diapers.
We’ve had therapists complain about teaching him sign language. We’ve been told that it’s our fault he doesn’t talk, because there’s nothing to stop him from doing so (except the trach!)
We’ve had people tell us we should just “make” him eat. We’ve been told his medical anxiety is all caused by us (no, 322 days in his first year in the hospital having random painful things done had nothing to do with that).
And I’m about to put him (and his nurse) in daycare 2 days a week as a transition to losing our nursing at decannulation, hopefully in the spring. I’ve been told daycare is a horrible idea. I’ve been told that I shouldn’t cater to his anxiety by working our way up to going without a nurse. I think I can’t win here with other people no matter what choice I make…but I am doing what’s right for Alex, because sticking him someplace brand new with a new schedule the same day I take away his primary nurse who’s been here 3-5 days a week for the last 20 months is just an awful thing to do to him after all he’s been through.
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Oh my- of course your child is anxious- he’s had a tough go so far! You are his lifeline and don’t apologize for anything you have done or will do in his best interest. The “experts” in his life clearly know very little about trust and attachment issues, in spite of their other expertise on children. You can’t MAKE him eat, sleep, or not be anxious. You CAN surround him with people he can learn trust and security from as much as possible , even with the variables of uncontrollable medical issues. Then he may voluntarily eat, stay calm, etc. without any “Catering to his anxiety”- HONESTLY! Please surround yourself with a supportive army and CLING to them- I’ll sign up! And the only person that should be complaining about the cloth diapers should be the one who scrapes the poo off of them…
Thanks for sharing! I, too, am very careful of my medically fragile son. He does go to preschool and I do take him places, but I’m very careful and ALWAYS have hand sanitizer with me. If we are sitting in church and I can obviously tell there are lots of sick people (like coughing) I leave. It’s not worth it for Jayden to get something because someone else came to church sick. I love the early childhood education program that is offered in our area. But when Jayden gets ready to start kindergarten, that may be a different story! I might just look into the home schooling because I don’t think our school district will be able to give Jayden what he needs or what I want for him. So we will see! I may be contacting you for tips on home schooling.
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We had to cope with the “topless drive”. Our daughter refuses to wear a shirt and/or a jacket when she has seatbelt on. It started in our car, and spread to the schoolbus. We and the school have made an agreement with Zoe that she CANNOT go outside without at least a shirt. And, if it’s cold enough, she will put a jacket on (we live in Eastern PA so yes, it gets cold!) – so far, we’ve had some luck with a sleeveless down vest.
We used to do battle with her over this and wearing clothes in the house. The headbanging, screaming, “dead weight” tactic and aggression were not worth it. We are looking into other solutions, but if we don’t give her this, she wouldn’t go to school at all…NOT an option as far as we’re concerned! (Hubby and I both work, plus I don’t really trust myself as a homeschooler!)
So if you see topless girl on a schoolbus, just know that Mama probably had no other option.
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So topless girl is YOURS?? (jk I live in Canada)! My child is often bottomless, or jacketless, or shoeless (did I mention I live in Canada?) How wise to pick your battles and compromise- our training with our adopted one would agree that you are doing exactly the right thing. God bless your school for working WITH you.
LOL! Yep, she’s mine… Thank you for your kind words.
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So happy to see this post from you Tammy. My husband and I just adopted (well finalizing) our 19 mon old son. He was born at 23 weeks and has ROP (visually impaired) and BPD. He is not weaned off O2 yet – he wears it day and night. Our families and friends are giving us SO much grief over staying at home and being so careful. But the flu/RSV/pneumonia/even a cold could potentially kill Braylon. The doctors tell us that malls, churches, gatherings inside – are all a bad idea during the winter season/flu season. We are also home schoolers. In the end, I think parents should make the decisions based on their children. I totally agree with you and we follow much of the same protocol as you do. Thank you so much for making me feel better about saying “no” when I have to. Merry Christmas!
Kelli
My oldest has ADHD and I have received so much flack from people for having him on medication. By the time he was 4 1/2 I told the doc he either needed to medicate me or my son… we just couldn’t survive anymore. He was a complete sensory mess! He required constant help to keep himself organized… brushing, joint compressions, weighted vest, heavy activities, etc… and the child rarely slept once he was out of his crib. He really loved the safety of his crib with the tent on top. He’s now 14, still on meds, and in gifted classes at school on the high honor roll! I am so happy that we found something to help him shine. No one knows what your life is really like… even if they have a child similar to yours… everyone must make their own decisions. Kudos to you for sticking to yours!!
Medicating our daughter was the only thing that brought some normalcy to our family at all. In hindsite, I wish I had done it sooner! There are still pangs of guilt when I tweek or ask for higher doses, but I cannot imagine how compromised our other kids would be if our only agenda was externally organizing our special child(lots of life is doing that anyway!) without the help of our doctor.
Ugh! You are telling our story! We JUST started allowing Christopher to have therapy in the gym this year at the clinic – even though they sanitize EVERYTHING….We have taken soooooo much crap about this, from family, school, etc. I remember arguing with the special Ed Director about his LRE. They were talking about keeping Christopher “locked down” if he came to school. I reminded them that that ment 1. his own teacher, 2. his own bathroom, his own HVAC system that was NOT attchaed to the the rest of the school, etc…..He finally “got” it when I pointed out that his LRE is the one that didn’t kill him.
Christopher has both a genetic immune disorder (in addition to what ever issues there are with the immune systems of people with DS) AND docs believe that brain damage affects his immune system over and above both of those. He has had all vaccines, makes antibodies for about 12 weeks, then no more….7 years into this, we are finally staring to get fewer comments about exposing him to sickness to built up his immune system.
I think it helps that, while both of us have pretty dramatic family dynamics – Big Chris’s family should get awards (LOL!) – most of them have figured out that if they force us to choose, they lose. Unlike many in their family that give lip service to that, I have no problem actually carrying it through. Christopher provides more than enough drama through no fault of his own, I don’t need it from folks who should know better. ;P
We were also told that he would be in a “Persistant Vegetative state” when he was a baby, solely based on what his brain looks like on scans. Our docs are truely amazed that he is not only still here, but LEARNING! We have made HUGE sacrifices to keep him here with us – financially, socially, etc. But we wouldn’t have it any other way right now.
steph
As my son has gotten older he has gotten stronger so I am able to take him out more. But anytime he goes out he wears a face mask. We carry a bottle of lysol to spray down anything he touches.
We get grief for being cautious…and for homeschooling….and cloth diapering… It seems these days everybody has something negative to say about any choice made by anybody.
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So happy to see this post from you Tammy. My husband and I just adopted (well finalizing) our 19 mon old son. He was born at 23 weeks and has ROP (visually impaired) and BPD. He is not weaned off O2 yet – he wears it day and night. Our families and friends are giving us SO much grief over staying at home and being so careful. But the flu/RSV/pneumonia/even a cold could potentially kill Braylon. The doctors tell us that malls, churches, gatherings inside – are all a bad idea during the winter season/flu season. We are also home schoolers. In the end, I think parents should make the decisions based on their children. I totally agree with you and we follow much of the same protocol as you do. Thank you so much for making me feel better about saying “no” when I have to. Merry Christmas! Kelli
Wish all of you had my doctor! He is so supportive of my decision to homeschool and that in turn gives me ammo for family or social workers to mull over awhile! The “socialization” that my child needs is a structured playdate with 2 or 3 well-organized and supervised children with a similar system of discipline in place. Had my worker in tears and turned her face toward home-school- and makes my decision look appropriate and protective. God bless all of you!
I know this was posted a while ago- but just found this blog
I teach preschool special education. And, while all the children in my classroom do have special needs, I am a HUGE advocate of having children of all needs learning together. We engage in “reverse integration” for a good portion of each day (3-4 children from one of the other preschool classrooms come to join us for activities and center time in my classroom with our 4 children in the class) For the children who are able to handle a larger classroom size (the other classrooms can have up to 18 children!) they may go to visit another classroom and participate in their activities for a portion of the day.
You are correct though to say it is a challenge to meet all the needs of the children in one classroom! (thank goodness I have 2 AWESOME teacher associates in my classroom!) I think it really comes down to a personal decision- and a medical one! I have children in my classroom whose medical/sleep/nutritional needs come BEFORE school. That means I may need to pull out a child’s cot at 8:30 in order to allow a child to rest for several hours….or his nurse may take him home to rest in his bed. We work very hard to make use of the times he is alert and engaged. But, can we give him the amount of one on one time you can at home? No, not while meeting the needs of the rest of the children as well.
I can’t imagine having to feel like you have to defend a decision such as homeschooling your child! Each parent needs to make the best decision for their family and their child! I think it is WONDEFUL that you are providing this for your child and truly bringing the “world to your child”!
Feel free to check out my blog: http://www.howlongisthishall.blogspot.com
I write about teaching my preschool special education classroom and, although this IS different than homeschooling your own child, we probably deal with some of the same issues!