parents of Special needs children support group...

Well, I didn't see a thread for this, but those of us with special needs children are up against even greater odds. I have two children, both are special needs, my daughter is 12 and has adhd and ocd and is currently undergoing tests because they think she has dyslexia, dysgraphia and a possible autism spectrum disorder along with learning disabilities. My son is 7 and he has PDD which is an autism spectrum disorder that he was diagnosed with when he was 3. I figure if you guys wanna talk, we can be here for eachother.

Happy writing. :)

I've got an eight year old daughter with PDD-NOS. I'll be right behind you in the slow mind-losing process. I'm having my twins investigated for ADD/ADHD (they literally scare their kindergarten teachers, so the doctor is finally listening to me. Wish he'd done that last year when I asked him "Hey, could my girls have ADD?") I only have daughters and I don't want to keep trying for a boy.

So one scoop of "Might As Well Be Autism" for me please!

my 9 year old has AD/HD and is on meds but she still drives me nuts and I have a 17 month old son who so far seems like he missed the AD/HD gene( if there such a thing) so im hoping I can join your group. She may be on meds but she is a defiant llittle thing so yes she drives me out of my mind and it does not help that mommy has a bad case of PPD and her difiant nature kills me a little bit each time

Great to meet you guys. Mikita, what kind of meds does your daughter take? Mine is on adderal xr for her adhd. Dreamingheart, glad to hear your doctor is finally listening. Wishing the best for you and I don't blame you for opting out of trying for a boy...lol. We can do this together, so if you have questions about dealing with things, I will help as much as I can. I am pretty experienced in the adhd and ocd thing as my daughter was diagnosed when she was 5 and is now 12. My son was diagnosed when he was 3 and is now 7, so I can tell you what I know. I know we can do this together, hoping we making lasting friendships and can help eachother even after nano is over..and during the next nano too and so on...lol.

I am a caretaker for children with special needs... not the same as raising a child from birth, but while they're in my care, I *am* their parent. I work with reactive-attachment, fetal alcohol spectrum disorders, ADHD, conduct disorder, as well as PDD-NOS and homeschool children with learning disabilities.

I also have membership to EBSCO Host so anytime anyone wants the latest research articles on anything, let me know! I can get them to you for free instead of paying big $$ for some psychology journal site :-)

Genie she is on Statera.. she was on the adderal xr but it was not enough for her, by 6pm she was off the wall and climbing in and out of her brothers play pen, running around the house and not listening etc etc and it was tooo much for me.
I talked to her doctor and told him there had to be a better med for her something longer lasting he told me about a 24 hour thing granted the ins company balked since most of the time they only put from ages 10 and up on it and she is only 9 but her doc said she needs it and I am insisting you supply it and whatever else they have to say to get them to cough it up LOL
it helps plus giving her melantonin at night to help her sleep does as well. My Daughter would not go to sleep on her on until about 12 am until we started to give her that now she goes to sleep at about 8:30 9pm which is about her bedtime she still has her moments when she is outright defiant and that is hard but nothing as bad as it was.
I still have massive issues with that defiant nature cause i sure dont recall treating my mum that way when I was 9 years old that didnt start til i was at least 16 LOL

My oldest is not-quite-diagnosed on the autism spectrum, but he has been noted as having OCD, a mood disorder, a tactile disorder and something else I'm forgetting. The doctor at the time didn't want to "label" him with Asperger's - but that's basically where he is. He's a delightful kid though, so I tend not to see it through my parent glasses.

My younger two are thankfully without any of it (that I know of - but then I'm pretty oblivious).

Last year during NaNo, my kids didn't impact me too much on the writing part. I had set up a progress chart that they could color in with me - so the only problem they gave me was when I didn't have enough progress to color in or when there wasn't enough to have each color one section (each section represented 1k finished).

We'll see how this year goes though.

My Adia is on Metadate XR: she was on Adderall but she gained eight pounds in a month. There was no end to her appetite: we literally found her licking the plate. It was actually quite frightening, and appeasing her that month, even with mostly fruits and vegetables, cost me another $160 in groceries. We literally could not feed her enough, and since she is eight and five foot even, there's quite a lot of little girl to start with. So we swapped drugs, and Metadate and Adia get along well until about 4 pm. Then, I have a weaker dosage of the same drug, without the extended release, to tide her over and keep her from killing her sisters.

Adia has never been difficult to get to bed. She has a routine and she won't deviate from it - it's like she turns into a zombie at 9 pm and has to do all her things before climbing up her bunk bed (and there was a mistake, especially with her still sometimes-bedwetting) and collapsing into sleep. She sleeps like the dead until about 7:15 am, and then, she's pretty sunny. Honestly, I often think of her as the "easy" kid.

I mean, she never cried as a baby, except during shots, she hardly even fussed. She was a very easy toddler to live with until she turned 3 and then, she was diagnosed with PDD-NOS. Even with that, she reads, writes, and does simple math very well, and we are very proud of her. I'm hoping to interest her in this for the Camp NaNo section: my summer novel was about life with her, and I'd like her opinions.

Hi all,
Reading through your posts, it's nice to "meet" people who have gone through the same things. My 7yo son has autism --- somewhere on the spectrum -- PDD-NOS, Asperger's, high-functioning. He's had a lot of therapy beginning at age two and has come a long way. He's doing well in second grade, especially since we just moved 2000 miles away from friends, family and familiarity. His biggest problem is socially. The boys don't want to play with him because he's not interested in what they play. Today was the first day he came home from school and was sad that nobody would play with him at recess.
Does anyone know how IEPs work? We moved from one state to another and they re-evaluated him here. I have an IEP meeting next week with the new school and I'm afraid they'll take away some of the things that were decided on in his last IEP meeting at his old school.

Kristen

IEPs differ from district to district based on the resources available. For instance, Adia's IEP includes a hall pass that she can use at almost any time to go to the bathroom and wash her hands. She's a little OCD about her hands and it makes her happier about sticky art to know she can wash anytime. Also, her IEP includes homework assignments, and some library support. Mostly, you should have a look at it and determine what HAS to stay - like, one of the young men in Adia's class has a blood sugar issue and must have a daily snack. It's become a classroom habit, and now I wouldn't take that break out of Adia's day - she's a bear at 4 without that 2 pm snack.

However, Adia is in a self-contained program - not mainstreamed. (She was very, VERY violent at 4, 5 and 6. She broke my front teeth having a temper tantrum.) Mainstream has different rules, of course, but they can still include stuff like a cool-down pass (they might have to put a table in the hall) or a bathroom pass. You might be pleasantly surprised at the resources available if you call ahead and ask about the provisions in his current IEP that you don't understand and how they can be met by existing district resources. They're really good about finding ways to meet needs up here (I'm in Washington state).

If he's sad about feeling left out, how about Cub Scouts? They legally can't refuse him access to the program, and he might learn to enjoy some of the same activities - and if nothing else, he'll be spending time with boys from lots of backgrounds, including homeschool (who might not play those games either.) Or, your public library might have the same programs as ours, where (well it's mostly teens) get together to discuss books and writing/reading and other stuff.

Adia's a bit of a conundrum: PDD-NOS seems to look very different in girls. Adia's a ball of sunshine everywhere she goes, but she does get some criticism from her peers, mostly for being very sensitive to emotions and teasing. Strange adults adore Adia, although most tend to ask me if she is retarded. She usually ends up turning around and asking me, "Mom, am I retarded?" "No, dear, you're autistic."

"I'm AUTISTIC," she'll tell the stranger, who is usually beet red by then.

Hi,

I suppose 2 out of 3 of my kids are in here with the "probably a bit autistic but not officially" (they were officially diagnosed for their speech difficulties.) Nothing really major, so they're both mainstreamed, just taken out for 90 minutes a week or whatever. My son stopped talking literally overnight just before he turned 3. He also had some (to this day undiagnosed) weird physical condition. That was worrying, and we went through a ton of medical tests (which he endured very patiently!) Now he's 11, and does ok (but he's not very social) and is less likely to go completely blank and unresponsive when unhappy. Heh. The school is pretty good about discussing the IEP with us and what would work best. For example, my son's IEP includes giving him extra wait time for (verbal) responses and an extra set of school books to keep at home and a few other things. When he was younger, he probably had some sensory issues, but I think he figured out how to help himself (I remember he liked to stuff himself into the big plastic container while wrapped in a blanket). Still picky about his clothes, but it's not worth fighting about, and he'll wear things for special occasions if we insist. My daughter is 7 now, and enjoying school. She's happier now that people can mostly understand what she's saying.

Glad that everyone is here. Just wanted to share that my daughter is going to a dance today (it's during school) and there is a boy who wants to dance with her. She is 12, so it's really cute. I had lunch with her today and the boy came and sat at the table where we were but he didn't say anything, he looked like a sweet boy and seemed really shy. She said a girl in her class, "set her up on a date" with the boy and she is supposed to dance with him today at the dance. I know most parents would worry at this, but I am thinking that those of you with kids on the spectrum see it totally different. It is a social connection, a milestone for these kids. So yay, I love to see her participate in things because for the most part she has a hard time at like pep rally and stuff because of the noise, but she went to a dance earlier this year and she was fine with that, though she said no one danced with her. She didn't say it like it bothered her though, just matter of fact. She blushed when she told me that she was going to dance with the boy (which she doesn't even know his name. lol I told her she better tell me what his name is when I pick her up from school...lol) It's nice to have you guys, cause i am sure a lot of parents who don't have special needs kids would be like, "so what, no big deal." But for us, it is a big deal. :)

*squees* Adia's still at the "I armwrestle the boys I know and I WIN" stage of life. I so can't wait for dances. She has begun making female friends though, but she has issues with other girls. She's beautiful, with widely spaced dark blue eyes and a strange haircolor - ash blonde - and I think some of the girls are a bit jealous. Well, and there are only three girls in special ed, so when one gets a bit cross, it's like World War 22 in that classroom. (No kidding: one of the other little girls has severe rage issues and has been known to let the furniture fly.)

I too am glad this group is here even though I am not a parent. About twenty years ago I put this three year old boy in a wheelchair that I had just finished building for him. The biggest smile spread across his face with his new found freedom of mobility. It was shame it was his grandmother and not his mom or dad that saw him come to life. It's a tough road you travel but you know those moments that make a parent proud are all the more special.

It's crazed in my daughter's classroom. I often feel she is getting less education due to the jungle in there. We're going in for an IEP discussion on the 27th (Yay BEFORE Nano for once!) and I intend to ask for more homework. She seems to be sliding backwards to the place where she's comfortable, not pushing ahead. Adia needs a LOT of push and a lot of both leading and us following to grasp a new skill, and I want to see her multiplying by 4th grade.

With two teachers in there (but both are new) there shouldn't be so much disaster.

I have a 10 year old son with an IEP. He was getting speech and language services at the age of three. He has an auditory processing disorder and dyslexia. These run in my husband's side of the family. My 13 year old son has been lucky to be able to study hard and do well in school.
Special education has been my life since 1992. I have been teaching the visually impaired for the last 19 years. This past year I started working for the Florida Department of Education, in the Bureau of Exceptional Education and Student Services.
I can answer almost any legal question regarding IEPs and the federal IDEA law. Yes, every state has their own interpretation of the law so changing states can be challenging. A calm but firm parent during an IEP works much better. Feel free to ask me any questions - nano mail might be easiest.

Glad to see you all in here! My son used SOLO (WriteOutloud and CoWriter) to write last year. He was a beginning reader at the age of 9 and wrote 500 words last November. We were very proud of him!

MermaidSirena

My five year old son was diagnosed with autism when he was two. They told me he would likely never learn to talk or interact, but through wonderful caregivers and our family's unrelenting love and care he is a perfectly exceptional chatter box. He is still on the spectrum, but has shown incredible social interaction improvements. I don't know what I would do without him. He's got one of the biggest hearts I've ever seen and a laugh that is just magic. His laugh makes everyone around him smile.

Yeah, the one thing I knew I got right was in having a "sling baby," - it was actually that she was so close in temperament to the "ideal" for Sears' parenting book about wearing babies that made us wait so long to have her "oddities" investigated. We just thought she was incredibly mellow, and hey, WE understood her fine...but no one else did, of course.

Oooh. Genie, I remember, I was going to tell you about this: http://nuance.com/dragon/index.htm

It's a transcription software - that means, your daughter could "talk" her novel, rather than become utterly frustrated trying to "write" it. It takes care of the spelling, and with some confidence under her belt about the words getting to the screen, she might be more willing to do the editing and polishing. It's a huge boon to my dyslexic friend, and my dad (who's missing fingers) also loves it. Support is excellent, the program is somewhat intuitive about homonyms (they're/there/their) and it goes as fast as you do.

I feel a lot of making progress with a kid (any kid) is first to make things easy, and then, when they're hooked, to up the ante a little. So she might well start with transcribing short stories or essays and end up someday racing us all to the finish line.

my poor 9 year old has a cold she feels awful!! she is my adhd kid and this evening she asked if she could lay down and she actually took an hour nap without being told..
then at 8 pm I told her to go to bed and she was asleep within 10 minutes and for her that is not normal!!!!!

she was in tears and for once they were real tears!!!!!!!! I felt so bad for her I gave her tylenol and told her to rest her dad swears its just a cold and she does not need a doctor but her baby brother has been sick so why would I not take her to the doctor as well???