Parents of Special Needs Children

[Wolfiesask]

Okay, I've looked all over the forum and figured this would be the place to come, so WELCOME!!!!! :)

As a parent with 2 special needs kids (one with cerebral palsy (F - male, 15) and the other with insulin-dependent diabetes (A - female, 10) I thought it might help to have a place of our own, in addition to our journal spaces, to come and talk, share, laugh and grumble with those who'll have an appreciation and understanding of what we're going through. :help:

Feel free to introduce yourselves and your kids (use just their first initial unless you'd rather post their full name - got to be careful on the 'Net) and rely on others for support, encouragement and understanding.

Nicole :wave:

[potatofree]

:wave: I'm here.

[Wolfiesask]

Welcome!!! Glad you could join...so now we're an us!! If you could forward the link to other parents you know....thanks!

[canucksrus]

Hi Nicole, thanks for the invite.

Hi Potatofree :wave:

Have to get the kids to bed now, but wanted to let you know I think this is a great idea before I sign off. Also I'll just give a quick into...I'm a single mom with 2 boys 4 (with autism) & 6. Dealing with a bunch of crap from the agency that provides our services, but I called the Gov't office that provides the funding to the agency and they are going to investigate. After 1.5 years, my ex is finally paying support, not by choice tho :lol:. Maintenance Enforcement finally got off their butts and suspended his license & his registration and since he works in the city, he pretty much needs both to get to work. Rec'd my 1st cheque last month - it was nice :D.

Have a great night!

[Wolfiesask]

Thanks for coming....remember to spread the word to other parents you know so we can support each other! :wave:

[canucksrus]

G'morning :wave:,
Quest, one of the forum moderators commented in my j that she felt isolated when her child was younger as the services that are available to us now, weren't when her son was younger. Thought I would post my thoughts about that here too & see what you gals thought.

You know what's sort of strange I guess, I feel more alone and powerless now than I did before all these people dropped into our lives. I set the stage for my son, I got the ball rolling, I taught him (or tried to)...you know, it was me that was in charge and control of his life. Now I have all these people around me all day giving me ideas, telling me what to do, taking credit for his accomplishments (when quite honestly, they haven't done squat in my opinion) and it's like my home is not our own anymore and my son is the Property of this group instead of being my son! Sorry if this doesn't make sense, but I'm terrible at transferring my thoughts to text. I think we were far better off before all these services started. Your son sounds amazing, which is a total reflection of your awesome parenting skills
Have either of you felt this way? Right now I sometimes feel like I'm nothing more than a spectator in his life (during the day when the aid/therapists are here) & my role as "mom" doesn't start until they're gone. Perhaps it's irrational jealousy impairing my views, but I honestly think we'd be far better off & progressing at a better rate without the majority of these services.

[5kiddos]

I just wanted to introduce myself. I am Janel and I have 5 dc. 4 boys and 1 girl. I am a SAHM. My ds#4 has a pretty severe speech delay (he is 4 and talks like a two year old.) He also has some low muscle tone issues..not too severe but definitely there. He is progressing now ...thank goodness...but I still worry about him constantly. He is behind also in social skills. Our developmental ped. (only seen her once) thinks he is autistic but in my gut I think she is wrong. He just doesn't open up to new people. His normal ped, the speech therapist, and his preschool teacher all question that diagnosis also. So...we are just shy of an autism diagnosis. I have not taken him back since it would mean $500 for me to pay for them to tell me something I don't agree with. I would rather spend it on his Speech Therapy...that is a month and half of that! He is in the developmental preschool which has been good for him.

Anyway, I guess I have written a book. LOL.
Janel

[Wolfiesask]

Thanks for coming Janel...hope we can be a support!

Canucks - I no longer feel like a spectator, since I've started telling it like it is. I tell the school that I'm concerned with our son's aide's IQ, and how is he supposed to help him when he doesn't understand it. He also was abusive to our son on one occasion (verbally) and I told them I wanted him fired if it ever happened again (it hasn't), as they weren't willing to do anything about it being that it was allegedly the first time. :rolleyes:

I stood up to our daughter's endocrinologist the last time she was hospitalized and demanded she be kept as long as necessary to figure things out (in the long run she was in for a week, and lo and behold, her insulin dosages almost doubled in some cases, yet I'm just the mom, what the heck do I know? :lol: )

The female of any species is the most dangerous, especially when it comes to her young. I refuse to kowtow to any 'professional' just because the have a piece of paper, beacuse in some cases, the most it's good for is to cut it into smaller squares to use in the bathroom. They don't know what's best for our family, we do.

So rise up in the cafeterias, and stab them with your plastic forks! :yay: (Pump Up the Volume reference) :lol:

I don't care if they think I'm pushy, overbearing or a downright b!tch, I'll do what it takes to ensure my kids, and my family's, needs are met, whether the 'professionals' and 'organizations' like it or not.

*steps off of soapbox* there, that feels better. :)

[canucksrus]

Hi Janel & welcome!! Sounds like you have your hands full! Wow, $500. That is a lot, especially if you feel like the dx is incorrect.

Thanks Nicole. I've actually become much more assertive since they all came back Jan. 9. One of my New Years Resolutions was to stop being a by-stander in my son's life and it seems to be working. Last year I wouldn't have dared questioned their hours, therapy technique's, mileage or called the Gov't agency that funds my programs and request my intake worker be present at the next IPP meeting. Things I have done this year. I'm so proud of myself. In fact, J's aid said the other day that I'm losing weight, but gaining confidence. She also said she's noticed a huge difference in my attitude since she's come back (in a good way). It's amazing to me how little regard I had for myself 20 odd pounds ago...I'm the same person, but I feel so much stronger now, inside and out!!

Oh, & I've already forwarned J's aid that if I'm not happy with the outcome of the IPP meeting (the therapist's), their asses will be canned :) & they can waste their $90/hour expertise somewhere else & from someone else's budget.

just because the have a piece of paper, beacuse in some cases, the most it's good for is to cut it into smaller squares to use in the bathroom :lol: :lol: :lol: :thup: I just said to the aid this afternoon that I don't have any fancy letter combinations after my name or a pretty diploma on my wall, but I've done more for my son (re: speech therapy) than his SLP has done. But as you already know, I is smert lik them Mensa peepills :D.