RE: Parents of special needs kids

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LaTigresse -> RE: Parents of special needs kids (7/23/2009 7:06:40 AM)
Both my kids have A LOT of my personality in them. Poor things.

badlilthang -> RE: Parents of special needs kids (7/23/2009 7:35:16 AM)
i just stumbled over this thread...and wow...am i thrilled.....i am the mom of a 17 year old boy - ADHD/Tourette/most likely Aspergers..and some other things we do not know... He was diagnosed with ADHD at 3...medicated with Ritalin from the age of 4....and i will never forget that first moment...i gave him a pill - (we called it brake-pills)...and about 30 minutes later my son walked to the couch and sat down...i was like - OMG - i have poisoned him....usually he was a whirlwhind....i looked at him and then he suddenly gave me that smile....and said "Oh mom..." while holding his hand on his belly"...."it is quiet here now....i can sit still....this feels good"....needless to say mom "had to go to the bathroom"...i cried my eyes out... Since then - we have changed meds - Concerta and Ritalin now...and he functions at school. Gets extra help, and is away every other week. We have a very good system in Norway and i am eternally grateful for the help. From small - he has had this wicked sense of humor - and that has helped us so many times...we can scream at each other - and most of the times one of us cracks up - because it is SO stupid with this screaming... Doing every day things, on the other hand - is a daily fight....so we have started something new. we have a 5 minute meeting every day - where we go through a schedule. He has 3 tasks he must do - such as dress - shower - eat his breakfast, empty His gymbag - carry down dirty laundry for instance....gets 20 points for each thing. Then there are the should do tasks - can be clean his room (with my help - 5 points - alone 10 points), put clean clothes in his closet..etc...trick is - he has to get 85 points to get the daily "carrot"...a soda - 2 hours on the laptop - 3 hours with his x-box....and so on... IF he misses they daily reward - he can still work for the weekly one..as they are 3 different ones....top one is of course if the week went without a hitch... So far we have done this since before Easter - and it has removed the fights and arguements....and NO punishments, either...because if he does not do as he has promised (we both sign this daily schedule)....he will not get the reward...that sure brought peace to the house.. And yes..of course - now and then i throw in a surprise gift..for when he has truly tried - had a bad day - and needed a smile... thanks for this thread......it is so nice to know i am not the only one struggling...s...

lusciouslips19 -> RE: Parents of special needs kids (7/23/2009 8:41:13 AM)
Keep up the great work badlilthang and thanks for the great ideas!

Lockit -> RE: Parents of special needs kids (7/23/2009 11:10:16 AM)
Still digesting the situation with my daughter. But with my son... I just don't know what to do to make him ready for any other place than here. I've researched all the medications I can think of and the only things that worked to get him to sleep on a half normal basis made him hallucinate which won't work and are the reason they wanted to strap him to a bed being too much to handle. I can somewhat handle his weird hours. It gets hard when he goes on nights for months or won't sleep for two days and then sleeps an hour and wakes and repeats for days. He just won't make it in a family setting or a facility. I've been working on this for over two years... hell, its getting on to three years.. how the time does fly by when looking back. While in it, it just drags on and on! lol I've been living on the edge especially when I know my time is comin and I am not going to be here forever. I still wake up some days and think... wow, I'm awake, I'm still here. Yet I need to get this situation turned around so that when I don't wake on that morning, he can be taken care of by someone. What would be best is someone like me who can flow with his needs, but that most likely won't happen. I guess it won't matter when I am dead, not to me... but while alive it matters and it scares the shit outta me. I so need a runner... someone who can come and take the money to pay bills and go to the store when I can't and no one in the family can. And a good night's sleep wouldn't hurt at all. Hell, for that matter... a vacation of a couple days would be real cool! lol

lusciouslips19 -> RE: Parents of special needs kids (7/23/2009 11:14:05 AM)
quote: ORIGINAL: Lockit Still digesting the situation with my daughter. But with my son... I just don't know what to do to make him ready for any other place than here. I've researched all the medications I can think of and the only things that worked to get him to sleep on a half normal basis made him hallucinate which won't work and are the reason they wanted to strap him to a bed being too much to handle. I can somewhat handle his weird hours. It gets hard when he goes on nights for months or won't sleep for two days and then sleeps an hour and wakes and repeats for days. He just won't make it in a family setting or a facility. I've been working on this for over two years... hell, its getting on to three years.. how the time does fly by when looking back. While in it, it just drags on and on! lol I've been living on the edge especially when I know my time is comin and I am not going to be here forever. I still wake up some days and think... wow, I'm awake, I'm still here. Yet I need to get this situation turned around so that when I don't wake on that morning, he can be taken care of by someone. What would be best is someone like me who can flow with his needs, but that most likely won't happen. I guess it won't matter when I am dead, not to me... but while alive it matters and it scares the shit outta me. I so need a runner... someone who can come and take the money to pay bills and go to the store when I can't and no one in the family can. And a good night's sleep wouldn't hurt at all. Hell, for that matter... a vacation of a couple days would be real cool! lol (((hugs)))

Lockit -> RE: Parents of special needs kids (7/23/2009 11:17:26 AM)
Thank you lushy... hugs back!

BeingChewsie -> RE: Parents of special needs kids (7/23/2009 11:30:51 AM)
I have a 10 year old son with a Dx of Asperger's syndrome, Mood disorder- NOS, PDD-NOS. He was Dx'd at age 7 and finally this year we seem to have found the right mix of meds, behavioral treatments and consequences. He takes Zoloft and Risperdal daily. They have worked wonders. We have trialed so many drugs, ritalin, concerta, adderall, clonidine, strattera, celexa, prozac, and I'm sure a few I have long since forgotten. He has 5 household rules that must be followed, if he follows them he earns $5 a week, if he doesn't he starts losing things, like computer time, TV time, and even snack foods are removed until he gets with the program. Once he figured out that we meant business and would take away literally everything, he started to improve. School is his main stressor, he has an IEP in place and we have to keep the pressure on the school constantly, luckily the fact that his step-dad is a pit bull of an attorney and has pit bull attorney friends that do special Ed has helped. We spend a lot of time in face to face conferences with the principal, head of sped and the superintendent out here. He attends a math and science academy, gets all A's, is so far beyond his classmates it is unreal. We may end up putting him in an online charter school for junior high that he can progress through at his own pace. He is currently in the GATE program for gifted and talented kids but even that is not enough of a challenge for him. He is a voracious reader and loves anything by Dan Brown. He has a great psychiatrist and great therapist and it has been helpful that I am a Family psych-mental health APRN. We have had our moments and meltdowns and have had the police at the door more than once when he has lost it but lately the reward/consequence/medications seem to be holding him better. He is back east for the next 7 weeks visiting family so we get a little bit of a respite before the school year begins again. Hang in there all you warrior moms and dads, I know it isn't easy :).

Lockit -> RE: Parents of special needs kids (7/23/2009 11:50:07 AM)
I am so glad to hear that things are much better than they were when I was parenting minors. It seems the school situations, for many area's have gotten much better. We could find no support and it really ticked me off at the time. I once put an ad in a paper asking other parents what they were going through and got many calls from frustrated parents about to fall apart. Not one had a good thing to say about the school situation. Many of us went to home schooling in fact. I was wondering... I know it was a big deal in our family... so with hearing what you all are going through, I wondered again about this. If you have multiple children in the family with one who has special challenges or needs, do you feel sometimes like the other's are getting short changed when it comes to attention or your time or focus? I always worried about this with mine. Two took far more time than my quieter one, who was always just trying to not cause trouble because he saw how much it took with the other two. I hated that sometimes it felt like they had to grow up far too fast. My middle one who is now the brain damaged one always had emotional problems in denying anything bad that he didn't want to see. I would see that he got time with me alone and such, but still he was often the easy one playing over there somewhere while I tried to deal with the other's needs. My daughter's were more physical as she had to be bathed twice a day with a special lotion rather than in water. Clothes had to be washed in a four step washing process and she created at least two loads of laundry a day. Then the doctor appointments... whoa.. three days a week, all day long. So do you have to deal with the guilt or saddness or whatever having more than one child and someone always seeming to get the short end of the mom/dad energy?

pixidustpet -> RE: Parents of special needs kids (7/23/2009 2:06:36 PM)
quote: ORIGINAL: sirsholly Last night i was talking with a close friend..telling her again about the LO's issues. We have both decided he is a victim of "The Parental Curse". You know...your mother saying "Some day you are going to have a child just like you." I was afraid to act out as a child because she was so violent...but the stubborn streak, willfulness, etc is me as a kid. my oldest is 27 in a couple more months. why do you think i dont have any grandchildren? [:D] she's AFRAID, i tell you, AFRAID!! kitten, laughing

hereyesruponyou -> RE: Parents of special needs kids (7/23/2009 3:31:18 PM)
I work with teens and adults with disabilities. My specialty is transitioning youth (18-21yr olds), especiallty those with developmental disabilities. Our school systems here vary by county from offering great services to denying anyone has a disability (if it's not coded they don't have to make accommodations, and they legally do not have to accept outside opinions or diagnoses). As for parents not attending IEP mtgs? I have mixed feelings on that. There have been many times when it was the parents who needed help more than the kid. I'm not knocking you guys, you are the supportive parents we love (and admire), it's the ones who are more concerned with getting disability checks for their kids than with letting them have anything like a normal life.Or the ones who abandon their kids to the state so they end up calling me Mom just because i am one of the only stable people in their lives who actually cares. Just another brief rant if you don't mind. Not all agression/impulsivity issues are mental health issues. Personality Disorders are not something that can ever be fixed, they can only be managed either by behavioral training and/or medication or more likely some combination there of. These guys and gals are my biggest challenges and i simply love seeing them be successful (ie. walk out of the room and rant and cuss instead of throwing chairs across the room). Kudos to all of you who say screw you to the people who don't get it and who are just doing the best you can every day. Look closely, I'm sure even you would be amazed at your own strength!

KneelforAnne -> RE: Parents of special needs kids (7/23/2009 10:12:00 PM)
I have heard various views on this... How do things like TV, computer games and video games effect your wee ones? Have you noticed significant -- or even slight-- changes in their behavior after periods of playing with such electronics? I ask because in an IEP-type of meeting a little person psychologist asked a student how much time he was playing his online games and he said 3-5 hours a night. His parents said that was one way they could keep him still and quiet-- I'm sure a needed respite for them. The psychologist was adamant that this should change, drastically and soon. So, I am wondering if this is something you have noticed that impacts your UM's behavior?

Lockit -> RE: Parents of special needs kids (7/23/2009 11:09:19 PM)
I had many reasons for limiting these things and some of it was behavior. I didn't like that they were repeating some of the smart ass stuff that was on tv and focusing on one thing, like games, too stationary and not phyically burning off energy and for health reasons not active enough. I wanted them to experience far more in life and build on personal interest so that they would never be bored by life and would enjoy obsorbing from it and enjoy learning. But... I would allow certain programs on tv on a limited basis, mostly when winter was very harsh or when it was a quiet time for relaxing. The games I allowed because it did help with hand and eye coordination and was fun, but these times were limited to an hour a day if that and was used as a reward system for them doing what they needed to do. Their chores, homework, behavior things and no struggles with siblings and mostly me! No fight to do what they needed to do... was my goal. When they were having a rough time and we needed to focus on other things, there were no games. They knew that there would be those times. The problem is that three to five hours a day is about all the time they could be with the parent, besides any problems they might have with the stimulation and all that. If parents are so burnt out that they cannot focus on a child that has some challenges especially in needing to be focused and such because they are so hyper, the child is going to act out and not get what they need in a lot of ways. To isolate in emotional ways, which is what this will amount to if it goes on for a long time, is going to cause a lot of damage in most kids. When I got sicker there were times when I was inconsistant and was lax on some of these things! Within a week I am telling you, I was so sorry I allowed myself some sick time! They got unruly, had little direction and were lost and feeling less loved. Structure and consistancy was actually easier than being lax and I have often called it the 'lazy parent's way to parent'. Structure and consistancy means a whole lot less work in the long run.

BeingChewsie -> RE: Parents of special needs kids (7/23/2009 11:35:09 PM)
We have to really limit the time during the school year, once the summer rolls around he wants to be out on the beach from morning until night so he hardly plays any of the games and stuff. Right now he is back east for 7 weeks and will going to camp from 8-5p and hopefully won't be playing too much of that crap but we can't control what his bio-dad allows so god only knows how he'll be when he gets back. quote: ORIGINAL: KneelforAnne I have heard various views on this... How do things like TV, computer games and video games effect your wee ones? Have you noticed significant -- or even slight-- changes in their behavior after periods of playing with such electronics? I ask because in an IEP-type of meeting a little person psychologist asked a student how much time he was playing his online games and he said 3-5 hours a night. His parents said that was one way they could keep him still and quiet-- I'm sure a needed respite for them. The psychologist was adamant that this should change, drastically and soon. So, I am wondering if this is something you have noticed that impacts your UM's behavior?

lusciouslips19 -> RE: Parents of special needs kids (7/24/2009 4:47:54 AM)
During the school year, weekends only. By the time he finishes homework, its dinner, bath then bed. I find computer and tv to be things my son over focuses on. SO when you cant even pick your butt up to go to the bathroom or eat dinner, thats a problem. I do use these things as punishment. Meanng I take them away when he misbehaves also. I am more leneint over the summer but he still gets limited. But hes in camp all day aand he loves to read.

purepleasure -> RE: Parents of special needs kids (7/24/2009 9:07:19 AM)
here's a happy moment i'd like to share... usually my brother will allow me to shave him only on a Sunday morning, when I'm showering him and washing his hair. Yesterday afternoon he had a doctor's appointment, and he ASKED.... "Sissy, shave and shower (his name - he speaks in 3rd person) please?". I was about floored that he asked for something that I know he doesn't like, because in his mind, he realized that he needs to be presentable when going to his doctor appointments.

badlilthang -> RE: Parents of special needs kids (7/24/2009 10:09:47 AM)
quote: ORIGINAL: KneelforAnne I have heard various views on this... How do things like TV, computer games and video games effect your wee ones? Have you noticed significant -- or even slight-- changes in their behavior after periods of playing with such electronics? So, I am wondering if this is something you have noticed that impacts your UM's behavior? Short reply for those not wanting to read a long reply: Yes - TV, computer games and video games can effect kids a lot...some can handle it - others can not. my son has a lot of games - Nintendo - Playstation - Wii and X-box....up til 12 - the games are fun and not violent - after 12 or so - more and more violence....my son played a lot - because his best friend lives 80 minutes away - and he needed something to do.... team sports is not for him - and we have tried other things out of the house - like bowling and such...and he was not into it...on the other hand, he's tried shooting with a compound bow - and that was perfect - so this is the sport we will try from the fall...! well - around Easter - also when we started the program about making a deal every day and sign it - i also removed every game above age limit 12/16. No more killing/shooting games...He was not impressed, of course - but oddly - never asked for them back more than once or twice...i also took away his online game - because it went out of hand. i knew it effected him a bit - but not as much as it truly did - until we both saw the difference in him. We sat down and talked about it and he said he is calmer inside - and has to admit that mom was right - the games did affect him...and i am beginning to see my happy go lucky kid again. Yes, he is also a teenager with all that includes - and since he does not have the social antennas or is able to easily pick up the unwritten social rules as a "normal" kid would - he had a hard time understanding what was going on inside... Now we play Wii a lot - baseball - bowling etc....Mario racing - lol - and i am getting good at this..L..i also drag him out of his room more - we spend time together looking for fun games - youtube etc...or we are out in the garden - he's on the trampoline a lot - and yes..mom also has to - which is probably very entertaining for him..L.. ok..as usual - way too long answer - lol - the short answer is on top!!

badlilthang -> RE: Parents of special needs kids (7/24/2009 10:14:18 AM)
quote: ORIGINAL: purepleasure here's a happy moment i'd like to share... usually my brother will allow me to shave him only on a Sunday morning, when I'm showering him and washing his hair. Yesterday afternoon he had a doctor's appointment, and he ASKED.... "Sissy, shave and shower (his name - he speaks in 3rd person) please?". I was about floored that he asked for something that I know he doesn't like, because in his mind, he realized that he needs to be presentable when going to his doctor appointments. isn't it just wonderful how such a minor thing for anyone else - can be such a sunshine gift for someone else.....thank you so much for sharing...s...and here is a lil one of my own... My son and i sat one day and did the "If you could wish for anything..." - we wished for money - health - endless wishes..hehe...and then i asked - we have always been very open about his ADHD/Tourette..etc...etc..."would you not want to be without ADHD" i asked...and he looked at me and said promptly "Nope...i have no idea how to be a "normal" teenager - but i know what it is like to have ADHD and how to behave with that". That sure made my eyes mist up.

lusciouslips19 -> RE: Parents of special needs kids (7/24/2009 11:37:51 AM)
My son was taught by a very special teacher that he is not special as everyone is special. Everyone has talents and gifts and different ways of doing things and seeing things. I was teary eyed when she told me how valuable he was to the class. He had moments that he would have his melt downs, but there were other moments that he said things with such profound insight that it elevated his whole class to see things differently. Soemtimes things that come out of his mouth are astounding.

lusciouslips19 -> RE: Parents of special needs kids (7/24/2009 11:54:01 AM)
That teacher I referred to believed in his abilities so much that she asked him to take care of her class frogs for the summer. A tree frog and a tomatoe frog. I cant get him to remember to take his bath or to put his shirt on right way in and forward, but he is managing to feed the frogs crickets every 10 days and to spray down their aqaurium so that it mimic their habitiat in the rain forest and give them whatever nutrients they need! He has managed to keep them alive. [8\|]

KneelforAnne -> RE: Parents of special needs kids (7/24/2009 9:27:41 PM)
quote: ORIGINAL: lusciouslips19 That teacher I referred to believed in his abilities so much that she asked him to take care of her class frogs for the summer. A tree frog and a tomatoe frog. I cant get him to remember to take his bath or to put his shirt on right way in and forward, but he is managing to feed the frogs crickets every 10 days and to spray down their aqaurium so that it mimic their habitiat in the rain forest and give them whatever nutrients they need! He has managed to keep them alive. [8\|] That is so awesome, Lushy... Isn't it amazing what kids can do when someone --BELIEVES-- in them? When I first started teaching I was in an inner city-ish school... terrible situations all over. And the one thing the school focused on the most was that it only takes ONE person to make a difference in a kids life. It seems that all of you are your children's cheering squad... applause for being a person they can depend on, and who makes a difference in their lives, every single day.

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