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Topic: Group for Parents of special needs children
no photo
Mon 03/09/09 05:27 PM
njmom I'm glad I thought to ask you then. Since you didn't think of it before you can ask now and let us know.

njmom05's photo
Fri 03/20/09 05:43 PM
Well the doctor finally called me back and I was able to speak to him tonight. I asked him all my questions, voiced my fears and wanted to know his opinion of the pro's and con's of the lens implants. He listened patiently, he told me that there would be no additional threat of glaucoma with the implants. He told me that the worst that would happen if the lens came unstitched that his eye would get irritated and it would bother him quite a bit. I asked about the eye growing over the stitch and asked about infections and what would happen (in terms of blindness). There were a couple questions he couldn't answer so he said he'd talk to the other doctor and said we'd speak again next week. His biggest concern is the way my son pokes his eyes, its gross, he literally sticks his finger tip in his eye. He said that is the easiest way for the lens to come unstitched and we would really have to make him stop that.

Ugh, I think I am confused all over again.

no photo
Fri 03/20/09 07:49 PM
njmom I take it the question about the growth was one he couldn't answer for you. Let us know how everything turns out.

njmom05's photo
Fri 03/20/09 08:57 PM

njmom I take it the question about the growth was one he couldn't answer for you. Let us know how everything turns out.

Yep, he couldn't answer the growth question, he couldn't answer the infection question, and one other that I can't think of. The other doctor is the one who will actually be doing the procedure and she has alot more knowledge about it than he does. He also couldn't say exactly what damage would occur to the cornea and/or the retina if it did become detached.
flowerforyou flowerforyou

njmom05's photo
Mon 04/13/09 07:10 PM
Okay, I just need to vent. I am beginning to HATE this eye doctor that my son went to. He is such a lazy pain in the butt. I called him 3 weeks ago and talked to him about my concerns with the damn lens implants. I have yet to hear back from the moron. I have called every week since I talked to him last. He could answer NONE of my questions and kept saying "thats a good question, I'll have to ask the other doctor and get back to you." Ummm hello, how long does it take to ask her. Or better yet, let me talk to her myself! grumble :angry: grumble

klc: Thanks for those kind words. That was very sweet. flowerforyou flowerforyou flowerforyou

no photo
Sat 04/18/09 09:11 PM

Okay, I just need to vent. I am beginning to HATE this eye doctor that my son went to. He is such a lazy pain in the butt. I called him 3 weeks ago and talked to him about my concerns with the damn lens implants. I have yet to hear back from the moron. I have called every week since I talked to him last. He could answer NONE of my questions and kept saying "thats a good question, I'll have to ask the other doctor and get back to you." Ummm hello, how long does it take to ask her. Or better yet, let me talk to her myself! grumble :angry: grumble

klc: Thanks for those kind words. That was very sweet. flowerforyou flowerforyou flowerforyou

I agree if the jerk can't do the job then what's he getting paid for?

njmom05's photo
Sun 04/19/09 05:17 AM


Okay, I just need to vent. I am beginning to HATE this eye doctor that my son went to. He is such a lazy pain in the butt. I called him 3 weeks ago and talked to him about my concerns with the damn lens implants. I have yet to hear back from the moron. I have called every week since I talked to him last. He could answer NONE of my questions and kept saying "thats a good question, I'll have to ask the other doctor and get back to you." Ummm hello, how long does it take to ask her. Or better yet, let me talk to her myself! grumble :angry: grumble

klc: Thanks for those kind words. That was very sweet. flowerforyou flowerforyou flowerforyou

I agree if the jerk can't do the job then what's he getting paid for?

This is when I wish I could call the insurance company and say "can you not pay him since he such a lazy pain in the butt." Oh well, I'll do what I had to do with his one other doctor, call daily, maybe they'll get sick of hearing from me and return the calls.

no photo
Thu 04/23/09 03:36 PM
Why don't you go ahead and call the insurance company and tell them what's going on. If nothing else ask for a referral to another Dr.

njmom05's photo
Thu 04/23/09 03:37 PM

Why don't you go ahead and call the insurance company and tell them what's going on. If nothing else ask for a referral to another Dr.

I will definitely be finding a different doctor, this one isn't what we need.

lulu24's photo
Thu 04/23/09 08:25 PM
do any of you know anything about children's medical services (CMS) or medicaid spend-down?

*sighs* my kiddos lost their medicaid and are bumped down to the secondary coverage called arkids B. it doesn't cover ANY audiological services, nor PT or OT.

njmom05's photo
Thu 04/23/09 08:27 PM

do any of you know anything about children's medical services (CMS) or medicaid spend-down?

*sighs* my kiddos lost their medicaid and are bumped down to the secondary coverage called arkids B. it doesn't cover ANY audiological services, nor PT or OT.

My son's PT and OT are covered by the county and by the school district we live in. Maybe contact your local intermediate unit and see what they can do. Also contact your county welfare office and see if they are able to help. I am guessing your kids are special needs, I know in PA it is against the law to deny a special needs child medical assistance.

lulu24's photo
Thu 04/23/09 08:51 PM


do any of you know anything about children's medical services (CMS) or medicaid spend-down?

*sighs* my kiddos lost their medicaid and are bumped down to the secondary coverage called arkids B. it doesn't cover ANY audiological services, nor PT or OT.

My son's PT and OT are covered by the county and by the school district we live in. Maybe contact your local intermediate unit and see what they can do. Also contact your county welfare office and see if they are able to help. I am guessing your kids are special needs, I know in PA it is against the law to deny a special needs child medical assistance.


i'm applying through children's medical services...she said they might be able to help with the audiological stuff, on the condition that i reapply for SSI for the kids. they were denied in september, and i really can't think of how anyone has the time to do that stuff. all the stupid appointments...even with diagnoses documented up one side and down the other.

the school won't cover the therapy since she has decent grades. she receives speech as a "guest".

the medicaid supervisor informed me i needed to just "go to part time or quit my job" to get my income back down under the limit.

soooo...i'm reapplying for disability, and i guess i'll appeal when they deny it...and i'm in limbo in the interim. if they don't approve it, i'll have to give up my meager promotion and drop to part time.

i wish i could get the school to do the therapies...but they wouldn't even test jordan since she had decent grades. when they found out she was receiving OT from an outside source, they graciously offered to have it done by their therapists (paid for by my insurance, of course). um, i politely refused.

i'm 200 bucks a month over the federal poverty line before deductions.

mygenerationbaby's photo
Fri 04/24/09 09:30 AM
From the top of this thread, please. What is CAPD? I am a Special Educator and I should know this one. Thanks, folk, I love this site..and this thread.

lulu24's photo
Fri 04/24/09 03:01 PM

From the top of this thread, please. What is CAPD? I am a Special Educator and I should know this one. Thanks, folk, I love this site..and this thread.


i'd assume it's a Central Auditory Processing Disorder...my daughter has this, as well.

no photo
Mon 04/27/09 07:37 PM
I'm SO HAPPY It's like Christmas in April. We got my daughter's wheelchair today. It is AWESOME:banana: :banana: :banana: love love

njmom05's photo
Fri 05/01/09 07:01 PM

I'm SO HAPPY It's like Christmas in April. We got my daughter's wheelchair today. It is AWESOME:banana: :banana: :banana: love love

Congrats!!!!
:banana: :banana: :banana:

no photo
Fri 05/01/09 07:04 PM

I'm SO HAPPY It's like Christmas in April. We got my daughter's wheelchair today. It is AWESOME:banana: :banana: :banana: love love


Fabulous! Just in time for spring weather and long walks!

njmom05's photo
Fri 07/24/09 05:57 PM
Question for all the parents on here. Has anyone ever told you that they plan on charging you more for childcare just because your child(ren) have special needs? I put a post on craigslist looking for just childcare for the 4 Thursdays in August and for potential afterschool care for my son. I put in there that after school care would be $10 per hour and I was willing to pay up to $50 per day for the Thursdays in August. I only make $15 and I feel $10 is acceptable to watch my son. I got one reply and she told me that she always charges more for special needs cause they require more care. But she also wants to bring her own daughter if she would watch my son (which I really have no trouble with). My son is SOOO much easier than a typical 9 yr old. No running around, no wrecking the house, no back talk. He is sooo happy with his Elmo movies and a juice cup and his cookies. Not sure why its bothering me so much, but I refrained from sending the kind of reply I wanted to send to her.

no photo
Fri 07/24/09 06:06 PM
Wow, I think your offer was MORE than generous. By the time you get taxes and such taken out you'll have nothing left over!

Is there anyway you could network with parents of other special needs children to find a more suitable sitter? Or possibly a young college or older high school student that had CPR training and such that would be willing to do the summer stuff for less?

I think it would be a crime to pay more than what you already offered.

njmom05's photo
Fri 07/24/09 06:56 PM

Wow, I think your offer was MORE than generous. By the time you get taxes and such taken out you'll have nothing left over!

Is there anyway you could network with parents of other special needs children to find a more suitable sitter? Or possibly a young college or older high school student that had CPR training and such that would be willing to do the summer stuff for less?

I think it would be a crime to pay more than what you already offered.

I didn't think my offer was out of line either. This girl was 22 and had a toddler of her own, the other part that bugged me was that she mentioned having an 18 yr old special needs brother. You'd think she'd be more understanding instead of wanting to be greedy. Thankfully I really don't need the care for August as I am able to take my son to work with me anytime I want to. The flexibility of my job is great and its what's kept me there for 4 yrs. I have a couple other sites I can use if we wind up needing after school care.

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