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Sometimes You Just Cannot Help Your Kids  RSS feed

 
master pollinator
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I feel so bad for my Oldest Child. She is in 8th Grade, a hard place to be in life anyway, and she has seizures, two types of seizures, and a lot of them.

Her Grand Maul Seizures, are pretty well controlled, but her Absent Seizures are horrific, averaging about 5-6 per minute. It is devastating for her; she is failing every grade, her teachers are frustrated, and she has no friends because she is hard to communicate with...her brain has gone into auto-mode as she is talking to them. Besides, who wants a friend who flops on the ground now and then.

We have a meeting with her teachers next week, but there is little I can see them doing. It is not like elementary where teachers have one-on-one contact with a student, there is a parade of kids and she is on autopilot 5 to 6 times a minute.

Poor kid...she tells me she is terribly lonely. It is sad when all you can do is hug them.


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Travis, I am so sorry to read this. Like I am doing for you, I will keep her in my thoughts and prayers. We don't know why God gives us such burdens; we only know He does not give us burdens we can't bare. His intentions are unknown to us, but if we have faith, we can endure. My best. Jim.

BTW...my mom who was 101 and 8 months old passed away yesterday. Please keep her in your thoughts and prayers. She had a good run, and we are happy she is no longer suffering, but it doesn't matter when in life it happens, it is never easy to lose your "mommy". Thanks.
 
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For grades self-school/homeschooling/onlineschooling, homeschool/tiny private school kids can still join sports teams and other social group in some public school districts.

For non-family social time. she could volunteer to teach elementary school kid after school/ymca/boys&girl clubs/church/girlscouts/etc

For future driving?

For future work/career?

For future partner of her own?

For future kids of her own that might develop the same or similar?

Having a kid with a single food allergy already enough for me, You are a stronger person than me.

Do the doctors nearby have medicine that would really make a difference?
What will happen if she keeps on failing school.
What if she leaves school/homeschool in a small town? Become a hermit
What if she homeschool in a big city?Have lots of non school outlets
Man I have no solutions.
 
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...I  had no idea this sort of seizure even existed.
What a heavy burden for anyone to bear.
At a glance,  it seems possible she will outgrow them,  but that doesn't help her now.
Given her age and grade I'm guessing she hasn't always suffered this affliction, so she knows what it's like for things to be different.
I know you will advocate for her with the school.
No one there should be mistreating her for this,  and no adult should be showing anything but patience, no matter what.
Just because her struggle isn't as easy to understand  as some other disabilities, doesn't make it less real.
School is terribly important, but her mental well-being is more important  still.
With all that's going in with you,  homeschooling hardly seems like an option.
I sure hope the school as a whole will commit to being as generous,patient and humane as possible.
 
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You mention your daughter being lonely. Have you considered getting her in touch with other children who have similar symptoms? Most likely this will be online, although if you're in a large enough city there may be some groups which meet in person. Having a "modern day pen pal", especially one who can understand what she goes through, may be helpful. Have you asked her what she wants to do about what she's facing, which supports she wants?

I wish you and your family all the best.
 
Travis Johnson
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We have tried encouraging to do social things, but she has no interest. She is an artist so art is her life!

Sadly we live in a very rural area so even her medical team is hours away, that means she only sees them one or twice a year. When it does, it means we have to spend the day at a hotel. This is tough for us financially.

I felt so bad for her, she is such a good kid, but the other day when we had a family meeting and explained we are going to sell our other houses due to finances, I casually mentioned being poor. She was hocked. It is almost funny because Katie and I have worked so hard at providing for the kids, and keeping them isolated from the realities of how little we have in terms of material things, that she did not even know. I guess the fact that we have pulled it off for 14 years says something! I guess no one realizes they are "poor" until someone tells you that you are.

I am going to sit down and talk with her and make sure that there are no issues with her mentally (thoughts of suicide). She is happy-go-lucky, but I need to instill in her that God only expects her to do the best she can with what she has been dealt with, and that she is loved.


 
Travis Johnson
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I just got a message from the school: she is missing from class and the school police officer is trying to find her. If she has an absent seizure during class change she will wonder off not knowing where she is going. It breaks your heart! :-(
 
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Travis - I'm so sorry to hear this. I hope that she is found soon and well. I would seriously look into homeschooling, or independent study or something. There is no reason to subject her to regular school if it's not working for her. I homeschooled all of my kids at various points in time for different reasons. They also went to public school, did independent study and some weird hybrid for a while. I say this to convey that I don't think any one option is always best. One of my kids also had health problems. The public school was not accommodating at all. I had to get very aggressive towards them to get his needs met. I'm quite the fierce mama. He later returned to public school, but that was his choice. Best of luck.
 
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I feel for you. I've got an autistic son with sensitivity, communication, coordination, patience/temper and focus issues that I don't think will ever allow him to be a typical member of society. I worry about what his life will be like when me and my wife are gone. He's got a younger sister and we moved to the Midwest to be able to afford some land and get away from the distracting rat race. I plan on having two dwellings, one for each of them and am hoping they'll both stay here and that she can watch over him but in the end, it's going to be a choice for my daughter.

Then of course we make these plans to help our kids but we never really know if we're doing the right thing as we can't foretell the future.  
 
S Bengi
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Hoping there will be some good news soon.
Life is a struggle at times. You are doing really good, you just have alot on your plate.

I would say that your income is avg.
As for your cash flow, I am not too sure but it is probably avg
And for your net-worth, for some reason I just don't see it as being alot less than the average person in your area.

Sadly being avg means that we are all poor. Even being middle class is basically being poor.

I am glad that your kid is an artist, I think that artist are stronger than the avg Joe.


 
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Felt really bad after reading this. Will definitely pray for her. Hope she gets well soon.
 
Travis Johnson
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S Bengi wrote:I would say that your income is avg.
As for your cash flow, I am not too sure but it is probably avg
And for your net-worth, for some reason I just don't see it as being alot less than the average person in your area.



No, our income last year was $14,500...so I am pretty sure that is considered far below average for a husband, wife and four kids.. A lot of that is being farmers, but we do live in the poorest county in all of New England. As the saying goes here, "It is God's country because the devil refused to take it!"

I doubt we are average in terms of cash flow only because we have to be pretty creative to make things work.

Net worth is interesting to note though because being farmers what we do have, has a lot of long term value. The problem with that is, it only comes into usefulness when it is sold, and the value is converted into cash. Here in Maine there is a name for it, "Land rich and money poor."

This week though we did have a good meeting with the teachers though, and it seems a lot of her grades is due to missing assignments. They are working on a better plan to get them home to us, and we can assure they get done. So things are looking up.
 
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Travis,

You wrote, -----"It is sad when all you can do is hug them."

There is actually quite a lot you can do to help them. ~~But you may need to go a bit beyond what you have so far tried.

I have a friend. It has taken me some time to track him down, so I could talk to him about you. He is presently in SE Asia.

I have had occasion to spend a great deal of time with AMA doctors and surgeons. They told me I could not survive. I said to them 'thank you very much', but have at it anyway. And lots of interesting things then happened very quickly. Some many months later their emergency interventions had worked. I was still on the green side of things. ~~~But I was not the same.

Then I met Bill Ramsey. He is a holographic healer. What that means is that his approach to health and wellness includes all aspects of life. Every thing we experience, every joy, every sadness, every health and ill-health we have is found in/caused by three components. -Things we have done and experienced in our past lives can be reflected in our present life. -Things we consume and touch and surround ourselves with in this life can effect our mental, emotional and physical health in this life. -(And if I remember correctly) Things we think and feel right now effect us now. In other words. All our physical life, all our emotional life, all our spiritual life effects the life we presently live. And if you know that, and you know what to do about that, then anything can be brought around to right. -Anything.

I know that this may sound a bit different than you may usually believe, but I am telling you that what you think you know is not necessarily what is so. Bill helped me. In ways I never expected. He is a very kind person, a very straight forward person, who approaches each person he works with in a very matter of fact way, in order to really find what it is that can help them in the very best possible way for them.

Bill said he would be home (here in N. Ohio) in mid-March. For now he said his phone does not currently work where he is, but he can receive emails. He told me you can contact him if you wish. I know he can help your family. You will simply have to trust me in this (when of course you have nothing on which to base trust in me), but I am telling you I have seen him do things for me and for other people that are incredible. What he can do for you, you'll just have to write and see. Tell him more about your daughter's situation than I told him, and he can tell you of possibilities. If you don't like what he suggests, don't tell your daughter, and it ends. But, maybe the whole point of my writing to you is that it is the thing you can do that is more than just "hug". If you wish, let me know, and I will PM you his email address. Jim Fry  Stone Garden Farm  Richfield, Ohio
 
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Travis, I'm so sorry for your daughter. As a teenager, I, too developed epilepsy. Thankfully, mine was much less severe (I only had them when half-awake lying in bed. They were grad mal type seizures, but at least I was safe in bed. I did, however, feel and remember them. They were excruciating). Even thought the doctors never figured out what caused mine, the medication did stop them, and I was able to be weaned off of them in time for me to learn to drive.

If you're daughter is introverted and not interested in friends, that's not necessarily a "bad" thing. I was very introverted in Jr High and High School. I had friends, but never hung out with them outside of school (I hung out twice during my entire high school time). I never went to dances or events, and I really feel no lack.

I remember once reading a mother bemoaning the thought that her aspsergers son would "never be in sports or go to prom"...As someone who never cared about those things, I don't see why that mother was worried--those things aren't essential, and if the kid doesn't care about them, there's really no lack. If your daughter is happy without social interaction aside from her family, I wouldn't be worried that she's necessarily depressed due to it.

For me, more than having social time in school, it was more important to not be picked on. I think ensuring that she's NOT getting picked on is the most important thing. I would talk to her teachers if there is bullying going on. And, if the bullying is severe, I would probably homeschool if possible.

Another thing you might look into--if your daughter's doctors haven't suggested it already--is a strict ketogenic diet. I know there have been clinical studies done as to it's effectiveness in treating forms of epilepsy that aren't treatable by other means.

Of course, a ketogentic diet is probably a bit more expensive than your current grocery bill (my husband can't eat grains and sugars due to his Crohn's, and our grocery bill is HIGH). But, maybe just try focusing more on healthy fats and proteins, and less carbohydrates and see if maybe that helps. Though, from what I recall, those who are in ketosis for controlling seizures, have a very strict diet and do not stray from it, so as to continue controlling the epilepsy.
 
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