Topic: Group for Parents of special needs children
PrettieLady's photo
Fri 07/24/09 09:42 PM
I am right here with all of you. I have two children: a 1 year old daughter and a 2 year old son both whom has their own disabilities. My daughter was born at 30 weeks gestation. She has major heart conditions, on a feeding pump, required oxygen and blood transfusions. My son has kidney problems and has 3 blockages in his kidneys. He has developed hypertension due to the kidney issues. And has sensory intergration issues. If anyone has any information on sensory intergration in little children, I desperately need help. Thanks for listening.

earthytaurus76's photo
Fri 07/24/09 10:59 PM
waving

no photo
Tue 07/28/09 04:33 PM
I think this is a great idea!! My youngest son has Cerebral Palsy, a form of autism, sensory and auditory issues resulting from being born at 26 weeks gestation. He is doing remarkably well considering, it's definitely a challenge in and of itself.


no photo
Tue 07/28/09 06:14 PM

I am right here with all of you. I have two children: a 1 year old daughter and a 2 year old son both whom has their own disabilities. My daughter was born at 30 weeks gestation. She has major heart conditions, on a feeding pump, required oxygen and blood transfusions. My son has kidney problems and has 3 blockages in his kidneys. He has developed hypertension due to the kidney issues. And has sensory intergration issues. If anyone has any information on sensory intergration in little children, I desperately need help. Thanks for listening.


There is a book that might help a bit. I think it's called The Out of Sync Child. Supposedly one of the better ones out there on the subject. My 11 year old has tons of sensory problems. When she was a babe we couldn't even walk in the animal barns at the fair.......all that smell, sight, noise etc....would send her over the edge. Over time, and with some parent induced behavior therapy (just introducing her to small doses of it), this has lessened by a whole lot. She still has many sensory problems and prefers to be watching tv in someone's living room rather than being with a crowd at a party, but overall maturity has helped a lot.
There are some great occupational therapists out there that will work on this issue as well.
Good luck! There are many of us here that can always lend a listening ear any time you need it!
Hugs, Heather

njmom05's photo
Wed 07/29/09 08:55 AM
OMG! I just watched my child have his first seizure. What a frightening experience that was! I felt so helpless, its over but I can tell he isn't feeling himself completely. His balance is still way off and he can't move his arm properly. And of course, since we just moved, he is between insurances so that makes it much harder.

no photo
Wed 07/29/09 12:43 PM

OMG! I just watched my child have his first seizure. What a frightening experience that was! I felt so helpless, its over but I can tell he isn't feeling himself completely. His balance is still way off and he can't move his arm properly. And of course, since we just moved, he is between insurances so that makes it much harder.


Oh I'm so sorry. I remember that feeling well. I'm in the medical field and should have been prepared, but still freaked out a bit. I hope you can get the insurance sorted out soon so you can get the proper meds for his seizure disorder. I'll be sending out some prayers for you and the little guy tonight! flowerforyou

njmom05's photo
Wed 07/29/09 01:59 PM


OMG! I just watched my child have his first seizure. What a frightening experience that was! I felt so helpless, its over but I can tell he isn't feeling himself completely. His balance is still way off and he can't move his arm properly. And of course, since we just moved, he is between insurances so that makes it much harder.


Oh I'm so sorry. I remember that feeling well. I'm in the medical field and should have been prepared, but still freaked out a bit. I hope you can get the insurance sorted out soon so you can get the proper meds for his seizure disorder. I'll be sending out some prayers for you and the little guy tonight! flowerforyou

Thanks.flowerforyou I knew it was a possibility with his syndrome, but I was hoping he'd bypass them. I have heard though that they won't do anything about seizures until the child has had more than one. This wasn't a grand mal by no means, but still freaked me out.

no photo
Wed 07/29/09 05:55 PM



OMG! I just watched my child have his first seizure. What a frightening experience that was! I felt so helpless, its over but I can tell he isn't feeling himself completely. His balance is still way off and he can't move his arm properly. And of course, since we just moved, he is between insurances so that makes it much harder.


Oh I'm so sorry. I remember that feeling well. I'm in the medical field and should have been prepared, but still freaked out a bit. I hope you can get the insurance sorted out soon so you can get the proper meds for his seizure disorder. I'll be sending out some prayers for you and the little guy tonight! flowerforyou

Thanks.flowerforyou I knew it was a possibility with his syndrome, but I was hoping he'd bypass them. I have heard though that they won't do anything about seizures until the child has had more than one. This wasn't a grand mal by no means, but still freaked me out.

I imagine once you get some insurance they will want to do a study. My daughter's first one was a biggie, so she had the tests and got started on meds right away.

njmom05's photo
Wed 07/29/09 07:16 PM




OMG! I just watched my child have his first seizure. What a frightening experience that was! I felt so helpless, its over but I can tell he isn't feeling himself completely. His balance is still way off and he can't move his arm properly. And of course, since we just moved, he is between insurances so that makes it much harder.


Oh I'm so sorry. I remember that feeling well. I'm in the medical field and should have been prepared, but still freaked out a bit. I hope you can get the insurance sorted out soon so you can get the proper meds for his seizure disorder. I'll be sending out some prayers for you and the little guy tonight! flowerforyou

Thanks.flowerforyou I knew it was a possibility with his syndrome, but I was hoping he'd bypass them. I have heard though that they won't do anything about seizures until the child has had more than one. This wasn't a grand mal by no means, but still freaked me out.

I imagine once you get some insurance they will want to do a study. My daughter's first one was a biggie, so she had the tests and got started on meds right away.

Once I get his insurance set up I'll call the neurologist and see what they want me to do. He had a couple EEG's when he was a baby but nothing showed up on them. He has had some absent seizures but there isn't anything that can be done about those. He just sort of zoned out and then snapped back into reality, this was about two steps up from that.

no photo
Wed 07/29/09 07:28 PM
I wish I knew your first name mom!.....hehe. You know seizures are so weird, how there can be so many forms of them. My daughter had laughing spells and until she started the meds, we did not realize these were seizures. On the med, they almost disappeared. She has them now occasionally when she's stressed, but so much more infrequent than before. The last study she had done was quite a few years ago and I had hoped she outgrew them, but unfortunately had not. I do count my blessings though, that they are managed and she doesn't really have too much trouble. Hopefully, you will just continue to monitor and not have to do anything else. We moms have enough to worry about!

PacificStar48's photo
Wed 07/29/09 10:20 PM
Hi!
Best Wishes to all the Exceptional Mom's and Dad's and Kiddo's. Hope you all are having a great summer. Got you on my prayer list..Joy

njmom05's photo
Thu 07/30/09 06:17 AM

I wish I knew your first name mom!.....hehe. You know seizures are so weird, how there can be so many forms of them. My daughter had laughing spells and until she started the meds, we did not realize these were seizures. On the med, they almost disappeared. She has them now occasionally when she's stressed, but so much more infrequent than before. The last study she had done was quite a few years ago and I had hoped she outgrew them, but unfortunately had not. I do count my blessings though, that they are managed and she doesn't really have too much trouble. Hopefully, you will just continue to monitor and not have to do anything else. We moms have enough to worry about!

My name is Nicole. I was wondering about what may have brought it on. Didn't know if they can be stress related. If so, it could have been that for sure with all the changes here lately.

njmom05's photo
Thu 07/30/09 06:17 AM

Hi!
Best Wishes to all the Exceptional Mom's and Dad's and Kiddo's. Hope you all are having a great summer. Got you on my prayer list..Joy

flowerforyou flowerforyou flowerforyou flowerforyou flowerforyou

no photo
Thu 07/30/09 01:04 PM


I wish I knew your first name mom!.....hehe. You know seizures are so weird, how there can be so many forms of them. My daughter had laughing spells and until she started the meds, we did not realize these were seizures. On the med, they almost disappeared. She has them now occasionally when she's stressed, but so much more infrequent than before. The last study she had done was quite a few years ago and I had hoped she outgrew them, but unfortunately had not. I do count my blessings though, that they are managed and she doesn't really have too much trouble. Hopefully, you will just continue to monitor and not have to do anything else. We moms have enough to worry about!

My name is Nicole. I was wondering about what may have brought it on. Didn't know if they can be stress related. If so, it could have been that for sure with all the changes here lately.


Nicole! Beautiful name. Thank you! Yes, stress or lack of sleep does it to my kiddo.

no photo
Thu 07/30/09 01:07 PM

Hi!
Best Wishes to all the Exceptional Mom's and Dad's and Kiddo's. Hope you all are having a great summer. Got you on my prayer list..Joy


Awwwwwwww thanks!

njmom05's photo
Thu 07/30/09 04:45 PM



I wish I knew your first name mom!.....hehe. You know seizures are so weird, how there can be so many forms of them. My daughter had laughing spells and until she started the meds, we did not realize these were seizures. On the med, they almost disappeared. She has them now occasionally when she's stressed, but so much more infrequent than before. The last study she had done was quite a few years ago and I had hoped she outgrew them, but unfortunately had not. I do count my blessings though, that they are managed and she doesn't really have too much trouble. Hopefully, you will just continue to monitor and not have to do anything else. We moms have enough to worry about!

My name is Nicole. I was wondering about what may have brought it on. Didn't know if they can be stress related. If so, it could have been that for sure with all the changes here lately.


Nicole! Beautiful name. Thank you! Yes, stress or lack of sleep does it to my kiddo.

Thanks. I bet it could have been that then. We have had a really rough week and a half here. Between the move, my car acting up, my work is crazy, taking him to work with me, registering him for schoo, and being at my moms which always stresses him out. I am afraid to jinx myself, but he has had a great day today so far.

njmom05's photo
Fri 09/18/09 04:35 PM
Its been awhile since anyone posted here. Just thought I'd drop a note and see how everyone is making out now that school is back in session. My son is LOVING his new school. His teacher so far has been great! They send home a therapy switch everyday with a recording in it telling me about his day, and then I send it back to school the next day so they know how his evening was and if he slept okay. He loves the switch, he plays it over and over again in the evening.
flowerforyou flowerforyou flowerforyou flowerforyou

earthytaurus76's photo
Fri 09/18/09 10:01 PM
Edited by earthytaurus76 on Fri 09/18/09 10:05 PM
I had spoken to my son who lives at his private school today, and he was just chatting with me. They monitor the phonecalls.


This guy came in, and said to my son, teasing him "tell her what you did today in class". He was staff.

I said, whats going on honey? He said, oh this guy wants me to tell you what I did in class today, hes telling me what to say..


I said really? Oh hes trying to make you tell me what you did thats sposed to be bad?


My son said to the guy.. Hey, my mom doesnt care, Im her baby, and she doesnt do anything stupid, we just have a little talk, and were fine!

The guy was shaming him.

(See, my son has anxiety disorder along with a few others, and he leaves the class when hes overwhelmed.)

Its the fight or flight response. Thats the whole reason hes IN this school.

I got on the phone, and the first thing i told my son was that No matter what he does I love him, and nothing changes the way I feel about him... and then I explained that I want him to do his best in class, and try not to loose his cool, and that Im here whenever he needs me.

ANYway.. It was all interuption from this guy when he heard me praising my son for doing his homework, because sometimes he has a problem doing it.

I believe that if this stupid guy has something to say to me, he should have told me directly, or had my sons Dr. tell me.. not slight my son, and tease him, and all the crap.

The aides for the kids in the eve seem to be very young people.

I dont appreciate this behavior, and i had a hard time tonight sleeping about the fact this guy was doing what he did.

(after that, my son said to be quietly, tell them i want to come out of here.)

He needs to be there, and get help.. he gets treated for his issues there, I hate him being there, but people like this just make it worse. DAMN I really hate that he has to be there.


njmom05's photo
Sat 09/19/09 05:35 AM
That sucks, is there someone you can talk to at the school and get that guy away from your child? That is unacceptable and completetly ignorant on his part to do that to your child. I'd be bitching about him. I had to do that with my son's bus driver and the aide on the bus, between the two of them, there isn't one brain. After a few calls to the transportation dept., it seems a little better now.

earthytaurus76's photo
Sat 09/19/09 10:13 AM

That sucks, is there someone you can talk to at the school and get that guy away from your child? That is unacceptable and completetly ignorant on his part to do that to your child. I'd be bitching about him. I had to do that with my son's bus driver and the aide on the bus, between the two of them, there isn't one brain. After a few calls to the transportation dept., it seems a little better now.



Id really like to. His grandmother handles everything since I am out of state. I dont want to make waves there if I cant change anything.

His father is a psycologist, and supposedly they have respect for him, so Im going to speak to his father today, and see if anything can be done.

I just dont appreciate that kind of behavior in any way.. its a real detriment, and absoloutely counterproductive.