"Special Needs" landing place

[Kelly]

Anyone interested in having a a venting/plea for help/feel good story- landing place for our "special needs" kids? I hesistate to call Alex special needs, hence the quotes. I'm just not sure what to call his issues-I guess he has special circumstances. Another place I visit calls them GFG (gifts from God). A nice positive spin on things. I hesitated to start this thread. I'm just picturing him 10 years from now somehow finding it and hating me to talking about him. :sigh: Yes, I worry too much. Just looking for a place to post where people understand me. (:whistle:Where everybody knows your na-a-ame:whistle:-Cheers, anyone? Sorrry, little sidetrack background music) Anyway, any interest?

If so, post an intro!

[Connie1222]

I'm in! :wavey:

Jack - not sure exactly what his issues are, he's a mixed bag for sure. Though he has AD/HD combined type tendencies, he really doesn't score high enough to actually be dx'd. Plus we've (his developmental ped, his therapist and I) decided that it's not his underlying issue anyway. His ODD (Oppositional Defiance Disorder), mild PDD and anxiety are. He can be aggressive and andry and moody. I've just started his on 10mg of Strattera, which I'm upping to 20mg by the end of the week. So far, no side effects. ::crossfing He's in a 12:1:1 special ed class in public school and gets PT, OT & counseling in school, plus we see a therapist outside of school.

Patrick - no dx, and I'm not looking for one. He has some speech & fine motor delays, but so far his behavior issues are all at home (saved for Mommy of course!), he is totally fine at school. He gets ST, OT and play therapy in school.

[AmyP]

We have a public journal for special needs kids. But this forum is private, so maybe you'd rather post in here.

Anyway, Sarah is on the moderate place of the autism spectrum. She goes to school five mornings a week (although we are on break for a couple weeks until extended school year starts) and gets ST, OT, and PT at school. She is in a classroom specifically designed for children on the autism spectrum and she is doing very well. She also gets private feeding therapy and speech therapy at the children's hospital. We are slowly working to get her off of baby food.

So far Sean is okay. He is so completely different from Sarah in personality that I think (hope) it bodes well that he will not have autism. The pediatrician said it's a good sign, although not a sure sign. I suppose that's the best we can hope for.

[Kate]

I have a big brag coming about Cameron... We met with his psychologist today and Cameron has been doing great with communication what is making him angry and is really using the skills he has been taught to control himself. The psychologist and I both agree that we can start bringing Cameron to therapy less and to straight transitioning him out!! I am so proud of how far he has come. The school even said that they have noticed a huge difference in him. The things that they have to work on are normal for his age group.

Cameron and Alex both have global developmental delays. Cameron also has ADHD. Cameron is in full time kindergarten (being retained this coming year) and receives ST, PT and OT. Alex will be in full time preschool and he receives ST and OT. They both have summer programs that start up the first week of July.

[Connie1222]

:woo: Cameron!!

[Kelly]

We have a public journal for special needs kids. But this forum is private, so maybe you'd rather post in here.


Ahh, I KNEW there was a thread somewhere, I just couldn't find it. I would rather post in a private thread though. Thanks for letting me know!

[Kelly]

Thanks for posting everyone! I'll be back later with an intro and my gripe of the day-the school district.

[Nadine]

I am here.
Intro will follow.

YAY Kate for such good news!

[Kelly]

Alex has has ADHD and has many characteristics of ODD, but no one has said "officially". When I asked his counselor about it he said "oh yea, definitely", so I'll take that as a yes:lol: Right now he is on Adderral to try that out. We've had the patch and methylin, both which work well, but only last until 4:30 and then our night were awful. So, we're trying this to see if it lasts longer. I'm trying to get everything squared away before kindy starts so I have 2 months and counting.

We are seeing a counselor to try and help us sort things out. We've only been to our new guy 3 times and he seemed a little stumped/amazed by Alex. A few appts have been late, getting done around 8:30 and Alex is running around the waiting room like a madman and he just says "wow, it's 8:00 and he's still going, wow". Yup, that's Alex!

Alex is such a sweet boy and then it's like his brain takes over and he gets crazy on me. Hopefully the new counselor can help me with that.

[Kelly]

My gripe-A friend of my bosses has a son with ADHD also and she's been an immense help to me. She told me to call NOW to get an IEP appt. before school starts and they will match Alex up with a teacher who is better equiped to handle him, can get to know our situations, etc. Apparently the school her kid goes too that Alex will go to also is super strict and has a zero tolerance policy on certain things. Example, sometimes Alex gets frustrated/angry and doesn't handle it well (not that his situation makes him exempt from the rules of course) but that would get him kicked out. So, I definitely need an IEP in place. I call to get an appt. and the woman (who was NOT friendly) told me that I couldn't do anything until 1 week before school starts when there is registration. Um, HELLO! It will be too late then! And surely registration is before one week before school, right? So, I called by my friend who said she was going to call her friend at that office to see what was up. Hopefully she can find out what to do! I'm going to owe her BIGTIME for her help when this is all over!

She has not had good experiences with the spec. ed office so I don't have high hopes. What a way to start our school experience:sigh:

[Brandi]

Kelly - IEPs and schools can really suck. Sometimes, they just don't want you to be there making their lives harder. You have to the advocate for your child because it seems like the school just doesn't want to. Of course, there are schools that are WONDERFUL too. I hope this works out for the best.

Kate - YAY Cameron! That's awesome!

Hi Amy!

Connie - My son sounds similar - a mixed bag for sure!

[Brandi]

I have a daughter Heather who is now getting close to 4. She has Tuberous Sclerosis which is a genetic disease where tumors can grow in any organ of the body. Most tumors are in the eyes, skin, brain, heart, and kidneys. Heather has them in her eyes, skin, brain and kidneys. She is on medication to control her seizures, which seems to be working quite well. She goes to and Early Childhood program school and loves it. She just started receiving PT and OT again after a long break. We are just really trying to stay one step ahead of this disease.

Heather just had checkups in Cincinnati - that's where we go to see all the specialists - and everything was pretty good. Her brain and eyes are stable, with no changes. She now has kidney tumors where she didn't before, but they are all still very small and we will just get them checked again in a year.

My son has just recently started seeing a new doctor for his "issues." I've tried, for the last three years, to pin down exactly what his diagnosis should be. We even saw someone about a year ago that was a huge waste of time and got nowhere. Well, this new doctor said he doesn't want to give him a diagnosis just yet, but thinks he may span several disorders, possibly including ADHD, depression, ODD, and he even mentioned Aspergers. I think his main problem is the depression issue. Aspergers doesn't fit him at all really. I've read into that a lot because a lot of TS kids (like my daughter) are autistic. Anyway, we've tried a few different meds and are now on day 6 of taking an anti-depressent called Luvoxamine I think. So far, so good. It takes a while for these drugs to take effect. I think it may have kicked in for him yesterday because it was a great day for him!

It would be nice if I had just one normal kid - geesh.

[Kelly]

Question: Alex has been hanging around with the neighborhood kids more and more lately. Of course, when it's time to come home, it's a battle if he's not on his meds. Like, I have to carry him home kicking and screaming sometimes. He's also pretty rammy and doesn't understand barriers like we don't go into other people's garages and drag stuff out to play with without asking. Do I explain his behavior or do I just not say anything and let them think I haven't taught him how to be socially correct or that I don't have any control over him (ha, which is true somewhat), in the instance of getting him to come home with me?

What do you do?

[AmyP]

I am pretty open about Sarah. I figure it's easier to explain that she is autistic and people are much more understanding about her behavior. People wonder why they don't get an answer out of her when they ask her name or age or whatever. I don't want them to think she's being rude. She just can't answer those questions.

At first I really wasn't telling anybody, but at this point I am over it. It's much easier to just tell people straight up what is going on rather than have them come up with their own ideas.

[Brandi]

Kelly - that's hard. You don't want to point out how your child is different because you don't want people to label them or set them aside as "different" and therefore not as good as their children. But, at the same time, you don't want to look like a complete loser of a parent either. Sometimes I say something, sometimes I don't. It's easier with Heather because she has brain tumors - easy to blame her problems on those pesky guys. Carter - well, there aren't any tumors, that we are aware of, so it's like it's just his fault, you know? It's much more personal with him and sometimes I just don't think it's anyone's business. Plus, I think that people can probably tell. Also, sometimes, I could care less what other people think anyway. If people are going to look their noses down on you, then it's their problem, not yours.

Yeah, not much help was I?! Sorry. I guess every situation is different for me.

[Connie1222]

I don't offer info about Jack. We've had a few incidents on the playground but really, it's pretty normal stuff and I'm always aware & try to make it a teaching moment so that the other parents at least see I'm on top of it and not letting him get away with anything.

Jack has a lot of issues with transitions, like leaving the playground. One thing I do is give him lots of notice. Like I'll go up to him & tell him we're leaving in a half hour, then 20 minutes, then 10 minutes, etc. Usually he's Ok with it by the time we leave.

[Bonnie]

I'm here, but I usually forget to post in these threads.

I have Courtney who has no real diagnosis, but has some delays. She was born with a cleft palate, which was repaired at 10 months, one small ear with no opening and her head is below the growth curve, a condition called microcephaly. She just has some things going on that make her different. Her most obvious issue is a severe language production issue. She mostly speaks using a combination of vowel sounds and has an extremely difficult time making consonant sounds. She has other issues, but you kind of have to know her to get it. She is a wonderful girl and is very typical in many ways. She has an IEP and is in the SEEC program (Special Education Early Childhood). She was in early start from the get go b/c of her palate, so we have always been in the system. She attends a regular preschool in addition to the special ed. I expect she will go to mainstream kindergarten as that is the trend out here, but I am hoping she can get an aide. We'll know a lot more at her January IEP meeting.

[Nadine]

Where to start? Yumi has ADHD. If you measure the acuteness from 1-10 (10 being the most acute) then Yumi would be a 8/9 and on some days I'd even say a 10.
He has mostly trouble controling his impulsiveness. That means that he steals, lies and disappears from classes or right after he gets of the schoolbus or when we are out on a bike trip/playground. He also causes damages to property. I don't think he does this (or anything) out of spite. More out of curiosity and because he can't help it. Only 2 weeks ago, he broke the toilet in the men's room in Shul. Repairing that damage cost 300 NIS (around 100$).

After having a very rough 2 weeks, last week seemed as if we had a few days without any incident/drama. Or so I thought. I guess it was the quiet before another storm.

The fact that Yumi climbed on the school roof again last week and keeps skipping classes whenever he feels like it caused several things. First of all, he will be suspended from school for one day - but not on a regular school day. On a day on which the class goes on a trip to a funpark. Ouch. That hurt him a lot. But then I hope this will be more effective than missing a regular school day. And his special ed teacher Nava suddenly speaks about him needing constant supervision next schoolyear. That means either I have to quit my job or we have to pay someone to be with Yumi 24/7 while he is in school. Both are not an option for us financially. Nava thinks he is endangering himself too much and that it is impossible to be responsible for him in school this way. She has not spoken to the school about it yet. We had a long discussion about the whole thing. We feel that this school is incapable of taking care of Yumi. The school just is not suitable for him. He needs a school that has the budget for special ed kids. There is just no way around it. He needs more special ed attention. Sigh. And so we are going to look into finding a school with less children per class and more attention to the children'd needs. That might mean that we will have to move to another school jurisdiction, ie another town. We just have to find out if the place where he is seeing Dr Avital (psychologist, he started the treatment a short while ago and they bonded) will still treat him if we move away from PT. Of course that would entail finding a new place to live (apartment), a school for Yumi, a school for Shoham and a DC for Moriah. AND a new nanny if it will be too far away for Dvora's friend Avigail. (She came along with Dvora -who is starting the ninth month of her PG and soon won't be able to continue working- last Thursday. She seems very nice and the kids got along with her very well.) All that would have to be settled and ready by September 1 2008. I daresay that would create enough drama for the near future, don't you?

[Connie1222]

Wow Nadine. :hug99: I hope you get it all worked out. And I agree, it seemd like he needs a school better suited to him.

[Brandi]

WOW! Nadine - that's a lot to deal with. Yeah, I think you have your plate full!

Remind me, is Yumi on medication? I just can't remember.

[Mandi]

I'm in! :wavey:

Jack - His ODD (Oppositional Defiance Disorder), mild PDD and anxiety are. He can be aggressive and andry and moody.

Connie, how long has Jack been like that? Brayden is very much like that and from what I was reading of ODD he's got a good number of the symptons. I'm just not sure if it's just him being 3 or if there is something more going on. But I'm about to lose my flippin mind over it all. Brayden is extremely aggressive (esp. towards Arden) and very defiant. He loves to scream "I said NO Mommy!!". For a while he was smacking/pushing/etc my best friend's daughter when she was over her. Thankfully that's stopped. Anyway, I'm not sure if it's typical boy behavior (or just Brayden being Brayden), jealousy or something more. I'm just wondering what sort of made you look into finding help for Jack?

[Kelly]

Well, Aderrall was awful for Alex! We are back on the Methylin and his ped wants to see the counselor's notes. He's on vaca until the 15th so we are waiting it out for now. I hate playing the waiting game. I feel like time is slipping away from me before school starts! I know I still have close to two months, but that only gives me 3-4 more counselor visits...not many in the grand scheme of things.

[Nadine]

I am so sorry, Kelly.
Finding the right medicine and dosage is hard. It took us several months when Yumi was in grade 1 and now we are nowhere near finding the right meds for him.

[Joan]

I'm going to jump in here. Sean is 16 and has ADD. I was in denial/refused to accept he had ADD for a long time. We finally got him tested when he was in 7th grade. He was diagnosed and put on meds. I HATED putting him on meds. HATED IT!!! I felt so many bad emotions but anyway I can't deny the help the meds have made. He takes concerta. He is so much happier in school and doing so much better.

[Connie1222]

Connie, how long has Jack been like that? Brayden is very much like that and from what I was reading of ODD he's got a good number of the symptons. I'm just not sure if it's just him being 3 or if there is something more going on. But I'm about to lose my flippin mind over it all. Brayden is extremely aggressive (esp. towards Arden) and very defiant. He loves to scream "I said NO Mommy!!". For a while he was smacking/pushing/etc my best friend's daughter when she was over her. Thankfully that's stopped. Anyway, I'm not sure if it's typical boy behavior (or just Brayden being Brayden), jealousy or something more. I'm just wondering what sort of made you look into finding help for Jack?

We realized there was something going on with Jack when he was in preschool (around 3ish) and the teacher was speaking to me every day after school. EVERY DAY there was an issue. It did not get better in pre-K and that is when I decided to have him evaluated. Good luck, it can be very tough. :hug99:

[Kelly]

I am LOSING MY MIND trying to discipline Alex. Nothing is working. His meds must be on vacation today because they are not working. Today alone I've had to drag him out of two neighbors houses (One boy invited him in-I couldn't find him in the meantime-and he told the other neighbor he was thirsty and needed a drink so she let him in to give him one) and out of one neighbors yard 5 times. Once while he stood in the middle of their trampoline and taunted me. Gah! Why can not one of the three counselors I've seen help me in this area?! Ok, ok, I shouldn't pass the blame..I just don't know how to do with him.

Any discipline recommendations for me?!

[Nadine]

:hug99: Kelly

There are different ways of behavior modification. As you know, sometimes they work and sometimes they don't.

[Brandi]

Where are you at again Kelly? I wonder if my doctor friend can recommend anyone in the area. We are in Champaign/Urbana, IL

[Kelly]

Brandi, I'm in Galesburg, but I'm willing to travel to Peoria, Bloomington, Springfield, Davenport. I'll happily take recommendations!

[AmyP]

Kelly, I have no idea. I'm sorry. :(

I have to brag a bit about Sarah here. She is doing beautifully these days. She's trying really hard to talk and repeats quite a bit of what we say. She can say her cousins' names (Anna and Emily), although I'm not 100% sure she knows exactly who they are. She says apple and banana and can identify them, which is amazing because she only eats either of those pureed. She can identify apple as either applesauce or the fruit itself. She can identify bananas as a fruit, but still calls most baby food bananas. Not a huge deal at this point. She is signing "more" and sometimes will tell us what she wants more of as she signs it.

Her eating is getting better as well. She is still eating baby food, yogurt, pudding, applesauce, and spaghetti-o's, but we are making progress towards meltable solids. She will put graham crackers and Gerber fruit puffs (she loves apple cinnamon flavored) in her mouth and touch them to her teeth, and her OT at school got her to chew two halves of a fruit puff. She sneaked them into her mouth and distracted her by singing and moving her hands and she chewed them up. I nearly fainted when I got that note from school!

At this rate, I might actually be sending graham crackers or puffs to school for her snack when the regular school year starts. Or, she might even be eating what the other kids eat! Wouldn't that be something?

[Kelly]

That's great Amy! Sounds like she's really doing well!

[Brandi]

Amy - it is always wonderful to hear good news like this! Way to go Sarah!

Kelly - I've sent an email to our doctor here to see what he thinks. He may know someone in the area, so we'll see!

[Kelly]

Thanks! I appreciate it!

[Brandi]

Kelly - our doctor came up with nobody in the area! ARGH! I know I have a friend in Davenport and they can't stand anyone there either! What's up with this?!

[Kelly]

Thanks anyway, Brandi. I went and pleaded with his ped today to find me someone and she is going to try and get me in with a psychiatrist she likes in Peoria. Unfortunately, it's at least a 6 month wait. Really helpful. She said sometimes she's able to get kids in with this specific person for a "consult" and then my ped and her will just do phone consults about the kids so we'd have that during the wait time.

Between this and the school district my frustration level is at an all time high this week. Apparently I don't hide it well as someone told me I was being "salty" at work and two people at vacation bible school (whom I just met last Sunday) hugged me this week because I look like I needed it. Sigh.