RE: Parents of special needs kids

RE: Parents of special needs kids (Full Version)

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kittinSol -> RE: Parents of special needs kids (7/22/2009 12:52:20 PM)
quote: ORIGINAL: intenze Lots of folks in Europe use harnesses all the time. I think they are safer. Makes one grow kinky though. I speak from knowledge [&:] .

lusciouslips19 -> RE: Parents of special needs kids (7/22/2009 1:03:58 PM)
The leash was put on my sons belt loop only when he could be lost among thousands of people. Guess what? He actually liked it and thought it was funny!

LaTigresse -> RE: Parents of special needs kids (7/22/2009 1:22:19 PM)
I remember my mother making a harness and lead for my little brother. She would hook the other end on the wash line. He also, was a wandering escape artist. Good at climbing the fence and running off. That lead allowed him to enjoy playing outside while my mother was cooking or whatever she needed to do. If I was taking the grands to an event or something with a large crowd I would definitely consider it for one or both of the boys. Having them wander down the isle in the grocery store is one thing. Losing them in a crowd of thousands gives me heart palpitations just thinking about it.

lronitulstahp -> RE: Parents of special needs kids (7/22/2009 1:28:37 PM)
i am typing this with tears in my eyes.... Hugs to all of you Parents, grandparents, siblings, and caregivers dealing with a difficult and trying matter. But this is for Lushy: i have seen you do the day-to-day hands on parenting of your son. He made me laugh within an hour of knowing him...a really hard laugh, he has wit. He is intelligent, articulate, adorable, and he tries so hard to just do "normal"(not realizing, in many things he is better than "normal"). He cares about issues that some grown-ups can't even grasp. The weeuns think he's "smart, and nice" and when he had difficult moments, they just called it "Asperger's stuff"(kids are amazingly accepting...i wish more adults were). It has been our pleasure to know him. i just love that all of his really good stuff can overshadow the stuff that isn't as easy to understand. i love you both!Well done, Lushy. You have my respect. Parenting is never easy. Parenting a child with special needs, and doing it as well as you have managed to do...amazing![sm=applause.gif]

Lockit -> RE: Parents of special needs kids (7/22/2009 1:29:35 PM)
Well... I got another mom challenge today. I've been avoiding it after taking a bit of it in and have to keep returning to it because I have a job to do. I just can't understand it or the medical information I am reading and I am wondering if I can pull this one off. What I do know is overwhelming and only brings one more question after the other, repeatedly. I'm just not sure I can make sense of it with my own limitations these days. All I know is my daughter is near heartbroken and to hear her voice break... trying to be strong and not give into it all is heartbreaking. Then to wonder what will happen with what we already know she has thanks to genetic's and how it all might effect her, her family and life. And then how she will handle all this and what I might have to tell her... and my son coming at her maybe sooner than we knew. Fuck... It's not karma... its not anything but life and the way it goes for some people I guess... but damn... I'd like a break at least for my children's and grandchildren's sake. I'm getting a bit tired of this race. I am just glad she has insurance for the time being.

lusciouslips19 -> RE: Parents of special needs kids (7/22/2009 1:30:14 PM)
There you go makin me cry again!

lusciouslips19 -> RE: Parents of special needs kids (7/22/2009 1:34:48 PM)
Sometimes Lockit, we are all overwhelmed. Thats why this thread is here. Express, express express! your burdens may be smaller if you can share. Hopefully, in some way. And others, isnt it great when you can say,"Today was a great day!" (my son was happy and cooperative this morning)

lusciouslips19 -> RE: Parents of special needs kids (7/22/2009 5:29:18 PM)
I have been wondering what people have thought about the criticism they get from others on their parenting? Back in febraury 08, I was at the Bar Mitvah of my nepew. It was a very elaborate affair. My son was sat with the other kids. i was sat with my other sister. It was quite the party and I was enjoying myself. Making sure I knew the general area my son was in. Well, he was picking on some younger kids, chasing them around and riling them up. Then I found out my son had taken my sisters digital camera and had erased all the pics she had taken. Needless to say, she and I and everyone was upset. I kept taking my son into a dark office to have a talk with him. My father criticised me saying I needed to keep better control of my kid. Insulting me. I cried. He then said he would watch my son while I got dessert. Dad proceeded to lose my son within a minute(that cracked me up, he thought he could do so much better). My son did get punished and he had to write a letter of apology to his aunt and read it out loud at the next family gathering. Some months later my son was staying with them for a week while they were still off of work and my son had another couple weeks before school resumed. They called me frantic as Aaron was in a horrible, over sensitive and angry mood. I went over and every time, I treid to talk to my son he would turn it into,"everyones being mean to me" and crying. I spoke calmly to him. Trying to get him to see how he was acting. Aspies are sensitive but cant often understand the feelings of others. I asked what he had eaten that day and found out all he had eaten was a bowl of cereal. Well, no wonder he was crabby and angry. I then asked,"dad, did you give him the medicine on an empty stomach"? I found out yes, he had. Dad said, "well you told me to give it to him in the morning, first thing". So I knew that was the reason. I sat my kid down with a chicken leg, potato and salad. I said start with the chicken" he kept making aadvances toward the salad with his fork with a smirk on his face (hes a smartass like mom). Within 5 minutes my son was laughing again. I went out to the back yard and my dad burst out into tears saying, "I am so sorry you have to go through this." and he hugged me. I said ",dad, he is who he is and hes a wonderful kid." So my dad stopped criticising my parenting after that. Knowing that I handle my son pretty well. Knowing that I understand my son and there is usually a reason why he is acting up that has to do with being tired, or hungry or not taking his medicine or taking it on an empty stomach. So dont let peoples opinions affect you unless they have walked a mile in your shoes. Because most of you have the patience of saints. I am grateful for all I have learned from my son. Parenting has created a spiritual growth that nothing can compare to.

kiwisub12 -> RE: Parents of special needs kids (7/22/2009 5:58:20 PM)
Oh how i wish there was a thread like this when my ums were kids! I have two daughters with add - one who is hyper. It took two years of school for me to be so frustrated with her report cards ( high marks for reading, low for math), and writing mirror image -and teachers telling me she would grow out of it - for me to take her to a pschologist and have her tested. And by the time we had her diagnosis, she was so frustrated with school, she pretty much wrote it off. She hated taking the meds, she hated school work, she hated homework - and she was in a private school so there were no accomadations made. She had ADD, with a spatial component - and the tester couldn't figure out how she learnt to read, she was so ADD. The second was hyperactive, and by the time i had read three books on ADD, i knew what her diagnosis was! She was three weeks into kindergarten when the teacher called and said she couldn't sit still for longer than 5 minutes - she had timed her!! The youngest one did well on meds. The oldest one, who was a lot more high/low in her behaviours and strengths, was the challenge. She was the one who threw up every day in the neighbours bushes - from anxiety. It never got better, infact, by the time she was 16, she had dropped out of school from anxiety, to be practically agoraphobic - she couldn't go to the mall, she couldn't go to school, she couldn't go to Lowes, for heavens sake. I pushed and pushed and she eventually got her GED, then her drivers licences. She took a job well below her intelligence level, but has been there for 4 years. She has dread locks, and piercings, and would make the average person cross the road if they saw her coming - but she is bright, sensitive, funny, - very sensitive!!!!!, and when people get to know her , they like her. I think she had so much pain and hurt in her childhood that she pushes people away before they can get close enough to hurt her. I had a quack of a doctor tell me that she had schizo-affect disorder - and i should plan on her living on the streets ,under a bridge. This was when i became profoundly depressed, and started crying every day at work. Shortly after i started taking anti-depressant and going to therapy. After a few years of therapy i gave myself permission to let the guilt go - but it was HARD My youngest was so hyper that on more than one occasion i literally had to pick her up and carry her out of shops and gyms. She would get so frustrated that she would have tantrums. And my only recourse was to carry her out of the situation. This lasted up to her 11th birthday, and at school as well. Schools don't do well with 10 year olds having tantrums. She also thought she was stupid. We ended up taking her to get another evaluation - she tested in the 80th percentile for her age - and once the psychologist told her that she was more intelligent than 80% of her classmates, and that she had difficulties that they didn't she calmed down a whole lot. It was as if being told that she had issues others didn't and that is why she didn't do as well on tests made it easier for her to work harder. She is now 19 and getting ready to start her second year of college - she wants to be a teacher. The eldest is (hopefully) starting college this fall, and wants to be a psychologist. She reads people so well, that if she gets over her negativity, she would be an excellent therapist. She was inspired by a therapist that helped her with her anger issues - he said she was THE most angry person he had ever met. There were times when i was raising them (with remarkably little help from the sperm donor) that i wanted to give them back to god. He made them, he should have to raise them. There were many times when i really really wished that i had never had kids, and when i look back at their childhoods i understand why. It was no picnic - others had kids that slept in their arms at church - i was crawling under the pews pulling kids out by their ankles, or my kid was standing in the fauyer of the church because she couldn't sit in the pew - getting snarky comments from the ushers because she wasn't in the church! I don't have a profound ending for this little story. My ums are wonderful, and i just want them to be happy and to make enough money to be able to live the way they want to live. I want them off the payroll. And i really don't want them to reproduce - i don't know how any kid with ADD can raise another. It was hard enough for me.

lizi -> RE: Parents of special needs kids (7/22/2009 6:50:13 PM)
I have something to share. My oldest um is ADHD, he also suffered from clinical depression when he was younger plus severe behavioural problems that were likely caused by a brain abnormality (that was monitored by regular MRI's), and constant asthma. We started seeing a counselor for him when he was 5. Soon after that we added psychiatrists and brain specialists to his stable of professionals - these people had folders on him that were over an inch thick. I was told that he may not live to become a teenager, that the brain abnormality he had not only caused multiple behaviour problems but would be inoperable if it ever grew past a certain point. We tried medication, therapy, anything and everything but nothing really helped. Whenever I went to school to try to iron out the current problem I felt as though I had neon lights flashing over my head as every single teacher turned to catch a glimpse of me. My kid was a monster so I must have been one too.... He didn't just drive me crazy...he made me question whether I could get up the next morning and start it all over again. If I hadn't had the other 2 younger ums to take care of I might not have ever gotten up. My ex and I struggled with him so much that I was actually diagnosed with 'Combat Fatigue' and told to remove him from our household to get him away from us so we could literally hang onto what was left of our sanity and to keep his two younger brothers in a reasonably sane household. I couldn't do it. I couldn't put him anywhere else. I got help from various family members at times and that helped immensely. I worried so much that he'd never make it in the 'real' world, I told his Dad over and over that our um would never even be able to hold a job down at the local burger joint....and I was totally wrong. He was just accepted into the US Army Special Forces. He's been in the Army now for 9 years and not only had multiple promotions there but then he went through the Special Forces tryout process in June and has been selected to be a Green Beret. He starts his training in Sept. I have no idea how this happened but it literally brings me to my knees. My head is still spinning. I know my story is unusual but we really don't know what's on the other side of any problem. I'm only telling this in hopes that it can give some of you hope and strength. I know where you've been. I've had people tell me to give up. I was told by numerous professionals it would never get any better than dealing with a daily struggle. I'm not in any way making light of any of the struggles any of you are having, I just never thought my um would be able to take care of himself and lead a happy productive life and he's proved me wrong on every count thank goodness...

intenze -> RE: Parents of special needs kids (7/22/2009 6:56:53 PM)
quote: So dont let peoples opinions affect you unless they have walked a mile in your shoes. Because most of you have the patience of saints. I am grateful for all I have learned from my son. Parenting has created a spiritual growth that nothing can compare to. Well said. People do say horrible things, stupid things. One time we were in a restaurant and my daughter started to cry because she was hungry. I was trying to quiet her, but the noise in the place and her hunger was agitating her. A man came up to me and said "can't you control your kid"? I had to leave the restaurant, or I was going to get arrested lol. People say " God doesn't give you anything you can't handle." If that were true, God wouldn't have invented prozac. That

LaTigresse -> RE: Parents of special needs kids (7/22/2009 7:03:08 PM)
Luscious, yes I have had multiple people criticise my parenting. Some got told to fuck off and die, in my own special way, but most got ignored because they themselves hadn't been there yet. Now that most of them have, I listen to them talk about, or others tell me about, their parenting problems and I smile. It is easy to have a smug opinion about something you've not experienced. When you experience it, the smugness usually gets knocked out of you.

PanthersMom -> RE: Parents of special needs kids (7/22/2009 7:04:32 PM)
oh god, the guilt! touchy subject with me, i look at the biological son and think some times why did i try so hard to have him, he has to go through so much! but then he comes to me, burps in my ear as he gives me a bug hug and runs away giggling. how could i have done anything different? the guilt with the adopted ones is of a different sort, but it's still guilt just the same. did i do enough for each one, did i miss clues that would have helped get a diagnosis sooner, get help sooner? did i do the right thing by adopting them, could they have done better as an only child or with a set of parents that didn't divorce? it's hard to deal with the guilt. i know we've all felt at least a twinge here and there. but then sometimes when i'm feeling especially guilty things happen that will make me bust up laughing. the oldest was about 7, having one of his seizure episodes and he's a horrible stick just like me. the nurses were trying to find a vein to put his iv in, we had two of them, one with the needle, one holding his arm in place and me laying across him trying to keep him still and calm. now mind you, #1 has a severe speech delay, many people cannot understand him at all. i'm laying across him, holding his little body still, telling him he can yell and scream and be angry with me if he wants and mommy won't be mad. so they're poking him and he's yelling and he finally looks me dead in the eye and says, clear as a bell "bitch!" i thought the nurses were going to lose it. they were just laughing their fool heads off and the one looks at me and says "well he can say that for sure, no clarity problems with that!" it's moments like that that make all the shit worthwhile. [sm=biggrin.gif] PM

lizi -> RE: Parents of special needs kids (7/22/2009 7:13:36 PM)
quote: ORIGINAL: LaTigresse Knowing what I know now, I would start with a journal. The focus of that journal would be food and beverage intake, sleep patterns, play, physical activities, external stimuli (like people visiting, going places, activities like television, etc) and the short person's mood and behaviour. See if any patterns emerge. I can second the journal approach. As LaTigresse has pointed out it helps you see any patterns and when you need something to describe what is going on to the Dr you have it handy. The Dr's we saw for my um were always grateful to have the journal handy to see for themselves how things were going, what set him off, etc. It was something concrete I could offer the professionals that were trying to help us and it was something that enabled myself and his teachers to track progress (or lack of) in one way or another.

LaTigresse -> RE: Parents of special needs kids (7/22/2009 7:21:08 PM)
Guilt is the curse of a good mother. I hate that I felt it, still often do. Kick it to the curb as often as you can. We cannot change any mistake we made yesterday and we all will make mistakes. I used to tell my kids that they didn't come with instruction books tied to their big toes. I did the best I could with what I had, when I had it. So I screwed some shit up. They lived through it. We just do the best we can and that has got to be enough. Let the rest go.

pixidustpet -> RE: Parents of special needs kids (7/23/2009 1:16:22 AM)
quote: ORIGINAL: LaTigresse Guilt is the curse of a good mother. I hate that I felt it, still often do. Kick it to the curb as often as you can. We cannot change any mistake we made yesterday and we all will make mistakes. I used to tell my kids that they didn't come with instruction books tied to their big toes. I did the best I could with what I had, when I had it. So I screwed some shit up. They lived through it. We just do the best we can and that has got to be enough. Let the rest go. dear gods, yes. as parents, we suffer guilt SO much for stuff we think we're doing wrong...then the kid in question says something that makes you know you did ok. my son...who is 16 now...lay on the bed with me telling me about the young man he loved, who was killed in a drunk driving accident. he cant talk to his dad about this. he's proudly sporting a pin that reads "straight? so is spaghetti till you get it heated up!" and he knows i'm gonna laugh and accept him as he is. i'm fortunate in that other than schoolwork being finished, i have not had major issues in my children. and after reading this subject, i have SO much more respect for those of you who do have kids with more difficulties. may you be blessed, and always find some joy every day in your children. kitten

Rainfire -> RE: Parents of special needs kids (7/23/2009 4:13:17 AM)
Lushy, at times, all I could do was ignore what was being said. I can't even begin to count how many times I was told that my son was simply out of control, I was a lousy mother and that I just needed to crack down and be stricter with him. At one point, the leader of the local Mormon church decided that my son didn't have a problem and it was all my fault so he reported me to the local Children's Protective Services. He didn't like the fact that we had pets in the house (he believed that any family with children should NOT have animals in the house - period) and that I was homeschooling, even after he threatened me and told me that I had to re-enroll my children in public schooling. When they came out, there wasn't a damn thing they could do to me, because when they looked, they saw that my curriculum was actually better and higher-level than the local schools. As for the animals, they couldn't do anything on that because I wasn't breaking any laws or zoning restrictions. But that jackass tried for the longest time to get me in trouble, to the point of where I got a restraining order against him. I dealt with denial and accusations for years, my family and the now ex-inlaws all insisted that it was all in my head and I was making it up for sympathy. They didn't believe me when we'd talk about the fires #3 set, wandering away and being gone for hours at a time, fighting and screaming, the meltdowns, you name it. Finally, a few years ago, I got a call from them and they apologized. Not for what they said but for denying that #3 had PDD and ADHD. (They've never apologized for the shit and crap they gave me and knowing them, they never well. Screw 'em, y'know?) Seems they had #3 for a bit and saw firsthand what I went through on a daily basis. All of a sudden, THEIR grandson was special and needed help immediately. (I was still the shitty, manipulative ex-daughter in law.) And they wonder why I don't have any contact with them anymore...... [8\|] As for #3, he called me last night and asked me how I made his favourite tater-tot casserole. Seems he was making dinner last night and wanted to make that. He's the best cook of the 3, I'm sure it turned out tastey-tastey!!! [:D]

sirsholly -> RE: Parents of special needs kids (7/23/2009 4:31:07 AM)
quote: People say " God doesn't give you anything you can't handle." true...but DAMN!!! I wish to hell he did not trust me so much

sirsholly -> RE: Parents of special needs kids (7/23/2009 4:35:51 AM)
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.

KMsAngel -> RE: Parents of special needs kids (7/23/2009 4:55:56 AM)
i've passed that curse on as well, holly trying to look guilty

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