(((hugs))) One of my coworkers has 2 kiddos with NF, and her spouse has NF as well. I understand the mixed blessing of getting a special needs diagnosis. At any rate, my coworker with the 2 NF kids and NF husband said she found a wonderful NF support group on the internet that really helped her.
Well, it's 'official'
He is officially "special needs".
Kai has neurofibromatosis. Until now he was pretty much with his peers at school, but yesterday we had a meeting with his teacher, vice-principal, spec ed teacher and an OT where a plan for his learning was hashed out. They were great, caring, and really seemed to know Kai as an individual. We made a plan for full testing (likely not through them; I think we are going to do it privately, at our expense, so we can retain control over the information) and the creation of an Individual Education Plan.
One hand I am glad that we can now create a plan of learning and education that meets his needs better, and allows us to opt out of some of the curriculum and evaluation that doesn't work for him, but I am also feeling really sad that he's, well, being affected by his disorder to this degree.
I feel like it's all real now, no pretending, no getting out of it, no luck and hoping will make it go away, REAL. He's passed over the threshold of being a little different, to a lot different. The rebel part of me is secretly pleased he is different from most, but then I feel guilty because I know that he works ten times harder than most other kids, and he just wants to belong and be like everyone else. he other part of me is mourning his abilities being on the same spectrum as his peers, and they are clearly not.
Anyways, thanks for listening. I just love him so much and feel like the world is hard enough without things being harder, and without being different.
Kai has neurofibromatosis. Until now he was pretty much with his peers at school, but yesterday we had a meeting with his teacher, vice-principal, spec ed teacher and an OT where a plan for his learning was hashed out. They were great, caring, and really seemed to know Kai as an individual. We made a plan for full testing (likely not through them; I think we are going to do it privately, at our expense, so we can retain control over the information) and the creation of an Individual Education Plan.
One hand I am glad that we can now create a plan of learning and education that meets his needs better, and allows us to opt out of some of the curriculum and evaluation that doesn't work for him, but I am also feeling really sad that he's, well, being affected by his disorder to this degree.
I feel like it's all real now, no pretending, no getting out of it, no luck and hoping will make it go away, REAL. He's passed over the threshold of being a little different, to a lot different. The rebel part of me is secretly pleased he is different from most, but then I feel guilty because I know that he works ten times harder than most other kids, and he just wants to belong and be like everyone else. he other part of me is mourning his abilities being on the same spectrum as his peers, and they are clearly not.
Anyways, thanks for listening. I just love him so much and feel like the world is hard enough without things being harder, and without being different.
1 - 8 of 8 Posts
the shock waves are still hitting me here and there, the realness of the situation. ((hug)). I'm glad my dd is special too, though, I also have that rebel part. yes certain things will be harder but certain things will be easier, too, obviously the hard parts stand out more sometimes.
Thank you Finch and bri276. I know that here I will be able to be understood.
I am glad his school seems to be pretty co-operative and child centred. They seemed to respect us, and care for my son's well-being.
One of the things I find hard is when people ask how he is doing. The usual answer is: "He's great!", because he is and generally does well. The HONEST answer is, "well, he has had some big difficulties lately, and we are worried about his back pain. He has a whole slew of tests that are coming up and we are worried. Of course if the back pain turns out to be normal and not a tumour, well we will just hold our breath until the next thing comes up which may be big, it may mean death, or it may never come. And, now that he is school-aged we are worrying about his self-esteem and vulnerability to bullying. So really, we are either worried or coping. But otherwise well thanks!" Know what I mean?
I am glad his school seems to be pretty co-operative and child centred. They seemed to respect us, and care for my son's well-being.
One of the things I find hard is when people ask how he is doing. The usual answer is: "He's great!", because he is and generally does well. The HONEST answer is, "well, he has had some big difficulties lately, and we are worried about his back pain. He has a whole slew of tests that are coming up and we are worried. Of course if the back pain turns out to be normal and not a tumour, well we will just hold our breath until the next thing comes up which may be big, it may mean death, or it may never come. And, now that he is school-aged we are worrying about his self-esteem and vulnerability to bullying. So really, we are either worried or coping. But otherwise well thanks!" Know what I mean?
My dh's cousin has fairly severe NF and some delays as a result. She is a really wonderful person and I'm very glad I know her. We always hang out together at family events!
Yes, I know exactly what you mean. I would say, save it for the people you know really care and can cope and not make you feel worse through some kind of false sympathy. 'Great, thanks!' is a good general answer, and then you can have some slightly more specific version so taht people who might want to can ask more, like 'He is really loving his classroom placement and his new teacher' or, 'we have some upcoming tests but he is feeling really well and doing great!'.
Fiona
Yes, I know exactly what you mean. I would say, save it for the people you know really care and can cope and not make you feel worse through some kind of false sympathy. 'Great, thanks!' is a good general answer, and then you can have some slightly more specific version so taht people who might want to can ask more, like 'He is really loving his classroom placement and his new teacher' or, 'we have some upcoming tests but he is feeling really well and doing great!'.
Fiona
I could've written the post you wrote about "how is he doing?". Wow. Okay,breathe. Okay, I just...I wanted to post to say I know how it feels. Just tears and hugs for you and your family.
Thank you, it means a lot, it really does.
1 - 8 of 8 Posts
- This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Mothering Forum
A forum community dedicated to all mothers and inclusive family living enthusiasts. Come join the discussion about nurturing, health, behavior, housing, adopting, care, classifieds, and more!
Full Forum Listing
Explore Our Forums
Recommended Communities
