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Parents of special needs kids - 7/21/2009 6:57:07 AM

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I wanted to develop a supportive thread for parents of children with special needs. It can be very frustrating and make a person want to pull there hair out. For instance, I have a 10 year old with Apergers. He is a funny and smart but cant do anything without being directed step by step. Everything from,"now wash your hands to Say hello". Checklists help but are not always helpful when a kid is stubborn and doesnt want to refer to it.

It is enough sometimes to drive me mad to have a kid who doesnt want to be bossed around, yet cant do anything without being told.

So what other challenges are rearing their heads for parets with special needs kids?

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RE: Parents of special needs kids - 7/21/2009 7:18:01 AM

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I so hope this thread stays up. My three yr olds Doctor wants him to be evaluated for ADHD. The level of hyperactivity is something i can handle, but the danger...a threat to himself and/or others is now the issue. He will not...WILL NOT...listen to us if he has a focus/goal, dispite the danger. If his goal is running across a busy parking lot, my voice will not stop him...he has to be physically restrained. The kid moved at the speed of light and will take off with no hint of his plans. He has caught me off guard time and time again (and please guys...if you ever see a kid on a leash..wristband connected to wristband...think of this situation before you criticize? A leash is on my shopping list, as holding his hand is not always possible. I actually fear breaking his hand/wrist. THat is how hard he fights me).

He is very violent with his dad and i. Yesterday was a good example. He pulled all the vidios off the shelf dispite being told over and over he is not to touch them. Ok...so i told him he will not go outside to play until they are put back. He said they are too heavy

. Then he announced he did not want to. I told him he did not have to, but he would not go outside. The next thing i know a very heavy antique Maple chair is flying towards me. This is typical. His level of frustration (i do not think it is anger) is so sudden and intense and violent.
The voilence is just here...he is a very passive child at school and his teacher was shocked when i said we are to have an ADHD eval.

Please...any help?

ETA...unless it is absolutely imperative and suggested by a second opinion (and a third) we are adamant that a three year old should not be given Ritalin, Aderrall and/or whatever new ones are out there.

< Message edited by sirsholly -- 7/21/2009 7:45:04 AM >

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RE: Parents of special needs kids - 7/21/2009 7:42:26 AM

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quote:

I wanted to develop a supportive thread for parents of children with special needs. It can be very frustrating and make a person want to pull there hair out. For instance, I have a 10 year old with Apergers. He is a funny and smart but cant do anything without being directed step by step. Everything from,"now wash your hands to Say hello". Checklists help but are not always helpful when a kid is stubborn and doesnt want to refer to it.

First...Lushy, thank you for starting this thread. Maybe we can help each other with ideas...definitely support.

My suggestion would be something i imagine you tried already. Repetition. Will he tolerate a drill (for lack of a better term)? For instance, if his bedtime routine is to wash his face, hands and brush his teeth, can you ask him before he heads into the bathroom what he is to do? If he can repeat it..awesome! If not, can you tell him the three things, then have him repeat you, then wait a minute and ask him again?

I know with the LoudOne the fewer words, the better. I sound like Tarzan sometimes, i swear.
His little task daily (of which he is VERY proud) is to "set" the table (i have started to use paper plates because of this). Instead of telling him: "alllrighty, get three plates and the napkins and then the silverware and don't forget the cups (plastic of course)."
I mean...he has little ears! He doesn't need to hear me babble. The words were simple and direct "Plates, napkins, cups". He tries to have recall of what is said, so i keep it to as few terms as possible.

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RE: Parents of special needs kids - 7/21/2009 8:04:45 AM

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Ritalin etc are less effective in the under 5 age group and more likely to prevent them being effective later on. What about cool baths? My daughter at that age was taking several luke warm baths a day, she found them calming. I also didn't like standing around arguing all the time and a change in activity helped. After the bath, she would be more amenable to doing whatever she had to, or after being read a story. Getting into a stand off just upped her aggression.

At an older age a whiteboard is really helpful. And once they can read so was a poster on the wall that said "I'm the mom, that's why". They would argue about stuff and I wouldn't respond verbally just point to the poster.

Part of what he's doing is trying to get you to respond, to feel in control by making you get out of control. So tell him he's losing control and ask what would he like to calm down and give him two choices, here it was a story or a bath.

Sorry, no help with an Asperger's. Except maybe a whiteboard with no more than three things on it, and once he's crossed those off, then erase them and add three more. Since a long list is very frightening to see.

Mine's 20 and bipolar, cycles every five minutes before the meds. At this point trying to make sure she is taking her meds and getting enough sleep and remembering to eat is my major problem. She started learning not to eat if she wasn't hungry which is great for weight control but since she doesn't seem to notice if she's hungry, she can skip food for two days until she actually gets sick and faints. She's not in touch with her body, never has been.

< Message edited by DesFIP -- 7/21/2009 8:11:31 AM >

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RE: Parents of special needs kids - 7/21/2009 8:14:10 AM

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Wow, fantastic thread, Lushy!!!!

Some who read this may know of my youngest monster, he was diagnosed with PDD (Pervasive Developmental Delay, a form of autism though his initial DX was Asperger's as well), ADHD and ODD (Opposition-Defiant Disorder). He also has a non-specified learning disability. I've been through a lot with him (he's getting ready to turn 17 in 6 weeks) and it never stops, even though he's now in California with his dad. I'm the one who gets the calls "MOMMMMMMMMMMMM!!! Dad won't listen to me and doesn't understand what the hell I'm trying to explain!" Then I get a call going "DO YOU KNOW WHAT YOUR SON JUST DID????" (Although in honesty, there is an issue with the ex denying that there is anything different about our youngest, especially since they are 2 peas in a pod and that it just might mean there's something "wrong" with him....)

My current project is that Mr. Smarties might have ASD as well.... he was placed on an Individidual Education Plan at school this year and we are in the process of getting him evaluated by a specialist. However, since he's my stepson and not biological son, while I can relate certain information as his caregiver, that's about it. There's some dispute that it's either ADHD or ASD, me, since they go hand in hand a lot, I wonder if it's both. Like holly described, there can be a rapid shift in temperament and I'd swear I'm dealing with a little Jeckyll and Hyde; sweet and loving one moment and then the biggest little snot on the planet. Unfortunately, there is a lot going on the mother's side so it could also be him acting out to deal with circumstances, we just don't know.

Holly, LO sounds like Mr. Smarties. One thing that was mentioned at the parents intake appointment last week was that especially boys like ours have extremely short term memories, so even though it seems like they're just ignoring us or not listening, it's the way their brains are wired. Long term memory is good, but the immediate short term memory? Forget it..... literally.

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RE: Parents of special needs kids - 7/21/2009 8:16:20 AM

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Celeste, how young can a child be diagnosed with bi-polar? Have you any idea on that? Just wondering because of some behaviors we've seen, it's almost like he's cycling in minutes, first ecstatically happy go lucky then raging, screaming, hitting, biting, kicking melt-downs.....

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Or is this the beginning of the end?"
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RE: Parents of special needs kids - 7/21/2009 8:20:31 AM

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quote:

ORIGINAL: sirsholly

He will not...WILL NOT...listen to us if he has a focus/goal, dispite the danger. If his goal is running across a busy parking lot, my voice will not stop him...he has to be physically restrained. The kid moved at the speed of light and will take off with no hint of his plans. He has caught me off guard time and time again (and please guys...if you ever see a kid on a leash..wristband connected to wristband...think of this situation before you criticize? A leash is on my shopping list, as holding his hand is not always possible. I actually fear breaking his hand/wrist. THat is how hard he fights me).

I used to be one to criticize until I had the same UM. Now I KNOW that my priority is keeping him safe and others' opinions/comments be damned. It has gotten easier as he has matured and understands that there are consequences to impulsivity and not listening that I control.

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if there is any reaction, both are transformed.
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RE: Parents of special needs kids - 7/21/2009 8:25:02 AM

estah

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Greetings Rain,

I was diagnosed with bipolar when I was 11 years old.

estah

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RE: Parents of special needs kids - 7/21/2009 8:25:17 AM

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Yes Holly. He has a routine. He even has an alarm he has set to ring when it is time to take a bath. A child like this in order to being a functioning adult is going to have to refer to a daily planner and right EVERYTHING down. I am not saying that repitition doesnt help. Just that it is frustrating to the parent.

When my son was younger it was very hard for me to hear that he had Aspergers syndome. I did find medications to be helpful. I took him to a pediatric neurologist for help with meds. One to treat the behavioral issues and one for the focus. A pediatric neurologist helped with dosing as his pediatrician gave him to much too first and he vomited. Thats when I realized I needed someone experienced with this.

The first time my son took meds he said, "I feel like I can think better now". So they are a godsend. Another thing that happens is a mother tends to not see some things. For instance, I understood him perfectly, while others couldnt. A mother also tends to compensate for their kid. For instance, laying out his clothes and getting him dressed because it is quicker than him doing it himself. There are things that you should start taking the time to let him do for himself.

Also, it will be better for him to get plenty of sleep, healthy food and, naps and a schedule that gives him a routine. Parenting can be very difficult. My son was very oppositional till he was about 8. Which meant that he said no and then cried later because he meant yes.But he played games and would say ok one chance. Then he would cry and say "no one more". This oppositional behavior was a game playing, power thing on his part but in the end he always lost. One has to be a firm parent and what mom says goes, period regardless of how many tantrums he throws.

I hope this helps. I am in no way perfect as a parent. I cant say I never lose it. My son does know I love him and want the best for him.

< Message edited by lusciouslips19 -- 7/21/2009 8:27:22 AM >

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RE: Parents of special needs kids - 7/21/2009 8:36:34 AM

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Can this be a thread to include sisters that care for thier 32 y.o. brothers that are autistic, severely mentally retarded, bi-polar and schizophrenic? Please? I realize that in my/our case the special needs person is a bit older, but we still need a place to share and sometimes vent. My brother and I have lived in the same house for almost all of his life.

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RE: Parents of special needs kids - 7/21/2009 8:36:44 AM

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One thing I do want to state, although my child has Aspergers syndrome and he is not Neurotypical, he has talents beyond compare. Aspies tend to fixate on topics of passion and they become very learned if not a bit odd.But very productive in many areas. There are quite a few writers with Aspergers and my son recently won an essay contest so that is a talent of his as well.

Always find your childs talents and skills. They do need something to be proud of. My son knows hes smart, funny and a good writer. He has been fortunate to have teachers that although he would have some outbursts with his behavior, they recognized how special and insightful and talented he was. Show you're children their strengths.

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RE: Parents of special needs kids - 7/21/2009 8:38:11 AM

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quote:

ORIGINAL: purepleasure

Can this be a thread to include sisters that care for thier 32 y.o. brothers that are autistic, severely mentally retarded, bi-polar and schizophrenic? Please? I realize that in my/our case the special needs person is a bit older, but we still need a place to share and sometimes vent. My brother and I have lived in the same house for almost all of his life.

Parenting is not about biology or age. Of course this threads for you too!

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RE: Parents of special needs kids - 7/21/2009 8:43:30 AM

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Lushy, I was a bit of the opposite. My youngest wasn't diagnosed until 2003 when he was 11 but I had been feeling that something wasn't quite right before that. Everyone kept telling me I was imagining it or making it up for sympathy so when the diagnosis came in, I felt relief. I also felt some sadness because at the time, I thought it meant that he'd never have a "normal" life, whatever the heck that is. But then I started researching it, learning more and discovered that it meant his brain was wired differently, that his brain was wired to a different schematic or plan, than most peoples. I explained to him that all it meant was that his brain processed information and sensory input differently, not that anything was 'wrong' with him.

I was big on schedules with him, because it helped keep him calm. We're also big on schedules here for Mr. Smarties, you can see such a difference with him when he's on his schedule. As for LO, that kid eats pretty darn healthy, only PERSON I've ever heard who wants green beans for breakfast! (His eating habits put my own to shame...)

Oh, and meds....I used vitamins and mineral supplements with #3 to great effect. However, the ex was not convinced even though he could see how much they helped. He insisted on prescription meds, we started off with Ritalin and when that worked horribly, switched over to Adderall which worked better for my boys. (#1, now in the Navy, is also diagnosed as ADD.)

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RE: Parents of special needs kids - 7/21/2009 8:44:21 AM

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Thanks lushy!

One thing I've noticed that the medications used to treat some mental illnesses or conditions today are much more effective, without the sedating effects that turned our kids into "zombies". Within the past year my brother underwent a major medicine adjustment, and Geodon is much better for him than Seroquel was. He's also on two others, that he's been on for years.

The reason for the medication change was because he was becoming more aggressive and violent towards us. The outbursts can be frightening, and sometimes painful. To see the person you care for to lose all control, and the emotion turmoil they are going through during their outburst is heartbreaking. The remorse my brother goes through after one of his episodes was even more heartbreaking. He would cry to the point that he sobbed, and just wanted to be hugged tightly and know that he is still loved.

< Message edited by purepleasure -- 7/21/2009 8:54:17 AM >

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RE: Parents of special needs kids - 7/21/2009 8:46:27 AM

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Peaches, I was about to cmail ya about the thread.....if you didn't get yer cute ass in here, I'd be pissed as hell and slap you upside the head!

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Or is this the beginning of the end?"
Proud member of the Clan Scarlett O'Hair

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RE: Parents of special needs kids - 7/21/2009 9:02:07 AM

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Hey Rain. It wasnt that I didnt know something was wrong. I started his evaluation with the school district while he was still in preschool. So his IEP was being developed from the age of 4. His diagnosis from a specialist came at the age of 6. He is not down as having it in medical records. I dont want that anyway. Just another thing for insurance companies to exclude. Anyway, I knew the individual problems and behaviors were there. I just freaked at the Label. Not when he was diagnosed at 6 but called it at 4 by an Occupational Therapist I took him to. I thought that it meant he was some lifeless non emotional zombie. That is furthest from the truth. My son is very sensitive. Perhaps oversensitive.

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RE: Parents of special needs kids - 7/21/2009 9:04:37 AM

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quote:

ORIGINAL: purepleasure

Thanks lushy!

One thing I've noticed that the medications used to treat some mental illnesses or conditions today are much more effective, without the sedating effects that turned our kids into "zombies". Within the past year my brother underwent a major medicine adjustment, and Geodon is much better for him than Seroquel was. He's also on two others, that he's been on for years.

The reason for the medication change was because he was becoming more aggressive and violent towards us. The outbursts can be frightening, and sometimes painful. To see the person you care for to lose all control, and the emotion turmoil they are going through during their outburst is heartbreaking. The remorse my brother goes through after one of his episodes was even more heartbreaking. He would cry to the point that he sobbed, and just wanted to be hugged tightly and know that he is still loved.

My sons first med was Stratera. It helped greatly but only went so far. Adderall did not work it made him sick and angry. Concerta is helping greatly. We did have to increase dose as he grows.

< Message edited by lusciouslips19 -- 7/21/2009 9:05:16 AM >

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RE: Parents of special needs kids - 7/21/2009 9:07:01 AM

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quote:

Mine's 20 and bipolar, cycles every five minutes before the meds. At this point trying to make sure she is taking her meds and getting enough sleep and remembering to eat is my major problem. She started learning not to eat if she wasn't hungry which is great for weight control but since she doesn't seem to notice if she's hungry, she can skip food for two days until she actually gets sick and faints. She's not in touch with her body, never has been.

thank you for the advice, Celeste. I will try the baths...if he does not knock me stupid with a a well aimed dining room table first.

I know Adderall (aderrall?) is often used to treat bi-polar now. It is also used and abused for weight control as it kills the appetite. Is this possibly what may be happening with your daughter?

< Message edited by sirsholly -- 7/21/2009 9:13:41 AM >

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RE: Parents of special needs kids - 7/21/2009 9:07:19 AM

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quote:

ORIGINAL: lusciouslips19

Always find your childs talents and skills. They do need something to be proud of. My son knows hes smart, funny and a good writer. He has been fortunate to have teachers that although he would have some outbursts with his behavior, they recognized how special and insightful and talented he was. Show you're children their strengths.

I've found that it's worth every effort to get the right teachers and special ed support staff who are willing to stick to the plan with my little guy for behavioral and education plans. Sometimes it's exhausting to get that right mix of people, but I've seen such strong growth in him when people don't focus on his limitations, but his strengths (even as we hold him responsible for his behavior).

I think another aspect of this thread is....how do folks take care of themselves through all this as well, given the amount of time and effort it takes?

_____________________________

The meeting of two personalities is like the contact of two chemical substances:
if there is any reaction, both are transformed.
~ Carl Jung

(in reply to lusciouslips19)

RE: Parents of special needs kids - 7/21/2009 9:10:55 AM

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quote:

ORIGINAL: purepleasure

Can this be a thread to include sisters that care for thier 32 y.o. brothers that are autistic, severely mentally retarded, bi-polar and schizophrenic? Please? I realize that in my/our case the special needs person is a bit older, but we still need a place to share and sometimes vent. My brother and I have lived in the same house for almost all of his life.

you have lived through what some of us are facing. Bring it on!!!!!

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