Arrrg

[Χά�ων]

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[Ellie]

:grouphug: :grouphug: :grouphug:

 

Although it would probably be a good thing for you to have respite care periodically, that isn't a good enough reason to subject your dear son to the public school environment.

 

I hope you are able to find the support and encouragement you need.

 

:grouphug: :grouphug: :grouphug:

[Harriet Vane]

I would put a lot of energy into hosting play dates in your own home, where you can exercise some control. There is no way I would send a child in this condition into a group environment every day.

[Leav97]

I voted no to both. I can't envision a child with immune system issue benefiting from being in school.

 

But, if he really desperately wanted to go to school to the point that being at home was causing a quality of life issue, I might consider sending him to school knowing that it might shorten his life.

[boscopup]

Public (and private) school kids get waaaaaaaaay more illnesses than my homeschooled family does. A lot of sick kids are sent to school when they really should be home, and stuff spreads like wildfire. I know of a few schools that actually closed due to too many kids getting the flu recently. Flu and stomach bugs are going around right now. I would not dare send an immunosuppressed child into that environment this time of year especially.

 

It's one thing for a healthy young child to GAIN immunity by being exposed to all that in K on up (they get sick and build immunity), but a child that cannot properly build up immunity... nope. Not good.

 

And as far as movement goes... He can definitely move more at home. In school, they have to sit in their desk for 30-45 minutes at a time at that age, I would guess (my experience is with 1st grade, and they sat at desks at least that long, so 3rd grade could even be longer - I don't know).

[Farrar]

I think the answer is pretty obviously no from the way you phrased the question. Hugs to you. I hope you and your ds find a more supportive community.

[starwarsmomma]

My son went from 30+ hospitalizations in ONE school year, to ZERO the following 2 years at home. Just from being homeschooled. He continued to do scouts, including camping (when health allows it). He plays baseball on a team, he has more friend playdates and sleepovers than I did growing up. He is healthier and happier than ever.

 

The difference is all his friends and teammates know DO NOT go around him when sick. If he is sick, we stay home.

 

Besst decision we ever made for him.

[TracyP]

I have an immunosupressed family member. I wish like crazy that they would keep their kids out of day care/public school. It is really hard to watch the child struggling for their life in the hospital because they got a common virus that the rest of us wouldn't bat an eye at - this just happened 2 mos ago. Not my choice, not even the dad's choice in this case.

 

I voted yes to the second but changed it after reading your story. That one would be a closer call *for me*, but you are absolutely making the right choice. I just don't think I would blame someone for making a different choice.

[higginszoo]

I think that there are other ways to expose him to other kids in more controlled environments than putting him in ps, where there is little flexibility and no control as to the crud the other dc are bringing in. We have been in a group activity where it was made clear that due to an immunosuppressed sibling of a participant, if there was even a question of crud, please stay home. This was in a hs setting, and a vast majority of the participants happily complied. As a child with chronic pain (but no immunosuppression), being around other dc did help me to push myself through some things, but that can be done through other activities -- scouts, sports, art classes,robotics league etc. -- things that when he really is having an awful day, he can skip. Having a child in ps with (fewer) special needs, it wasn't long before I was getting tons of notices for his lack of attendance/being signed out too much, even though most of his appointments were for services that the teacher demanded that he have to stay in her (specialized) classroom, but that the school district couldn't/wouldn't provide.

[Χά�ων]

I think that there are other ways to expose him to other kids in more controlled environments than putting him in ps, where there is little flexibility and no control as to the crud the other dc are bringing in.

 

The irony of people saying telling me to put him in school so he could be around other kids is that he is and has always been very very active in group activities. Some sort of scout activity (earth scouts until it disolved then campfire) and coops (2-3 days a week) and sport type activities since he was little. I think it comes from people hearing "homeschool" and thinking that we never leave our house. That could not be further from the truth. This year I had to put my foot down and cancel a couple of coops in order to have time at home for pesky things like laundry and sleeping.

 

DS generally appears fine when he is with other kids. They see that, they somehow miss it when I half carry him to the car afterwards or when he sobs from the pain on the ride home.

[bolt.]

Honestly, I think you need to ask yourself -why- you are allowing other people to have any sort of personal conversations with you about your son's medical condition.

 

You seem to "hear this a lot" from "the general public" -- but I can't remember the last time I talked with "the general public" about anything medical. Maybe I just have an invisible sign around my neck that tells people that I am not interested in hearing their opinions about my life... But if so, perhaps you would be happier if you had one of the same type of invisible signs.

 

Could you try memorizing some scripted answers like, "Oh, it's part of his medical condition. Don't worry about it. Nice day today, isn't it?" If they ate overly interested maybe try something like, "Actually, I'm not going to share the details. He's a growing boy and I need to respect his privacy in my conversations." You could meet any kind of suggestion with, "I know you mean well, but I assure you, I'm making the best possible decision. You don't need to understand why I've settled on homeschooling -- it's my decision and (for good friends/family) I could use your support more than your advice."

 

For doctors, I'd suggest, "Please keep your comments to the medical issues." and, "I'm concerned that you seem to be disregarding his known diagnosis. I can find another doctor if you aren't planning to take his medical history seriously."

[sbgrace]

I have a son with some similarities. His condition is metabolic (no prognosis; could be fatal but he's been stable so maybe a variant). He has related immune system deficiencies among other things. There is no question in my mind my son is better off (health wise and in other ways too) at home. Doctors..there are good ones out there. It's sometimes hard to find them though. I feel for you. I'm sorry you're not around more supportive people and professionals. Would a prepared "pass the bean dip/this isn't something I'm going to engage" response help? You don't need to defend your choices to anyone. You are mommy and you're doing what you think is best for your son.

 

I get discouraging, unwanted comments from people. Particularly, from my dad who can't keep his thoughts to himself and has whatever the opposite of the gift of encouragement is. It's hard. If this is family I feel for you. Do you also have supportive people? Medical professionals who get it?

[nrg]

One of the most difficult parts of parenting an invisibly disabled child is deflecting the foolish advice, uninformed snarky comments, and cruel judgements. You can do it! Let it all bounce off as you do what you know is right for your child. I am an older mom now, with grown children, and I wish I had learned to let it roll off sooner. You know what is happening with your son. Smile, be gracious, move on. DOn't let the foolishness chip away at you.

[Ewe Mama]

You know your child. You know what he needs. Trust your mother's heart. Ignore the outsiders who have not walked in your shoes, nor in his.

[Χά�ων]

Honestly, I think you need to ask yourself -why- you are allowing other people to have any sort of personal conversations with you about your son's medical condition.

 

You seem to "hear this a lot" from "the general public" -- but I can't remember the last time I talked with "the general public" about anything medical. Maybe I just have an invisible sign around my neck that tells people that I am not interested in hearing their opinions about my life... But if so, perhaps you would be happier if you had one of the same type of invisible signs.

 

 

By the general public I mean those people who must know such as coaches and some parents. DS looks normal but unathletic when to comes to sports. He is actually very athletic but his body does not work. Socially, in a sports situation, that is hard for children to understand. The kids see that he excels sometimes but cannot keep up. It looks like he is just not trying. The kids get frustated. I also have to tell the parents of other kids when he does team sports something so they will know not to bring a sick child.

 

I also feel it is VERY important that the parents of his friends know there is something so that they know to call me if DS needs medication or medical attention while hanging out with them. As for who else I tell, when I go hang out with parenting friends I talk about it. There is no support group (online or off) for parents dealing with what he has. Sometimes I just need support.

 

I need to come up with some good responses. I am just drawing a blank. The blank is not helped by my current state of mind. Honestly, I am no longer feeling the desire to be nice about it. The retort I want to throw out would be something that deeply stings the other person and is personalized. DS deals with a lot of grief because he is slower than the other kids. He plays but doesn't keep up. He is decent at redirecting play to something he can handle but has not mastered it. In an ideal world I would be able to step back and not take it personally but reality is that sometimes I want to beat compassion into people until they get it. I wish I had the ability to throw out awesome comebacks in a split second. Alas, I was not gifted in that area.

 

 

I am sure somewhere there is a doctor who gets it. I would like to find them but I am no longer confident that I will.

[Χά�ων]

Do you also have supportive people? Medical professionals who get it?

 

 

My mom is supportive.

 

The medical professionals do not get it. I am not a fan of any of the doctors he has seen.

[Elizabeth in MN]

Are there any specialists that deal with his condition?

[Χά�ων]

Are there any specialists that deal with his condition?

 

 

Yep and he has one. The doctor does a good job but they still do not know why he hurts and I get a blank look when I bring up some issues that I feel are related and greatly impact DS's quality of life.

[hsmom2011]

n/m

[Kathy G]

I am so sorry you have to deal with this. I am a physician and I homeschool my children- who are not immunosuppresssed. I would vote no to both your questions. I can't speak to the doctor'sunderstanding of the medical condition, but I can say that I know very few docs who support homeschooling. Are you in a big city where you could search for a doctor that understands homeschooling? That may help. Hugs to you- you obviously are a loving parent who has a lot to deal with. Hang in there knowing you are doing your best and IGNORE the people who pretend to think they know what is best for your child.

 

Is there a nearby homeschooler who would babysit to give you a break once in a while? That might be a nice respite at times.

[thebacabunch]

My aha moment came when my oldest dd was in 2nd grade and the ps demanded a copy of her medical records because she kept missing so much school because of her virally induced asthma. Her dr sent a note EVERY time she missed school and that wasn't enough for them. When they sent a threatening letter about it we immediately pulled her out. BTW, she was never behind academically, in fact she was ahead. She still gets sick here and there, but nothing like when she was in ps. She is doing very well. So well that we get asked when she will be going back to ps. Ummmm....she is doing well because she isn't in ps.

[Dmmetler]

My DD's pediatrician once commented that if all her patients were homeschooled, she'd be out of a job-because she sees the homeschooled kids so rarely compared to the PS ones. I have a friend who has an immunosuppressed child, and even in a small, private school (selected BECAUSE of small class sizes), her DD misses many days of school each year either due to illness or due to things going around that her DD can't be exposed to. If it weren't for potential custody issues, her DD would be homeschooled-as it stands, she's effectively homeschooled for most of the winter, only with a school keeping her on the records and grading the assignments (and an expensive tuition bill, too).

 

I taught a little girl with a degenerative neurological condition, who was only expected to live a few more years, and I wish that child's parents had taken her home and just experienced life. She was so self-conscious about her worsening condition and wanted to be "like everyone else", and really, I think she would have benefitted so much more in using her limited physical strength and stamina to, say, do some activity she wanted to do with other kids, instead of trying to make it through a school day. I can't imagine a worse place to spend the last few years of my life than a public middle school-which, at age 11, was where she was headed the following year.

 

Do what's right for your son-and you know what that is.