Topic : Raising a Special Needs Child

Hi! 

My name is Carol.  I am new here.  I was wondering if there was anyone who had a child with a Movement Disorder.  

My son is 8 years old, 100% dependent and in constant motion.  He is not able to control his movement. 

Just want to share, 

Carol 

Hi my name is Velvet and I am the mother of 7 children.My oldest is deaf in one ear but no other problems and I thank the lord for that. My third child is diagnosed as Bipolar  and  he has autisum (high functioning). We have done all the ieps and appointments until I wanted to scream. But all well worth it because I remember who I am doing it for not for myself but my child just like all of  you . Our children are gifts given to us not for punishment but for hope for the future . We as parents have to educate those who don't  know  what these special children can do. We must also remember that what works for one may not work for another. I consider myself very blessed to have all my children because I was not supposed to have any. I have a poem I would like to share with you that someone shared with me the other day I hope you find in it what i did thank you...velvet 

 P.S. We have just stated down a new road for my fourth child who was diagnosed with ADD            
Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this......

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy."

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that’s where I was supposed to go. That’s what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.  

I am the mother of five daughters... some step, some adopted, some homemade and some with disabilities.  My oldest daughters with disabilities are in their 30's now, living as independent adults, making their own life choices.  Perhaps not the choices their mother would choose, but it's their life and i have to respect their choices.  

What you all are doing is hard... I've been there and i know how hard it is... I was doing it as a single mom for most of my kids formative years.  Money was always tight.  We used to play, "prove to me your undies are worse than your sister's undies... and we'll see what we can do next payday."  There were times when i thought i had totally lost my sense of humor. 

I'm dead serious about getting kids the services they need, but i think you can do it without losing yourself or your sense of humor.  I am on the Board of Directors of an organization called, Mothers From Hell 2 (A name given to us by school bureaucrats for daring to stick up for our kids... the two is because the org folded then rose from the ashes like a phoinex.).  Our website is full of good solid information for parents AND, it's a place to go to regain your inner clown... start smiling again and send you running to the store to buy a bag of groucho nose glasses and tiaras. 

Google us.  Good luck, be strong and hang in there. 

Cilla 

Many public school systems now offer the option of taking classes online, and the cost of the classes is covered by the school district.  Sometimes students can take some favorite subjects at school for the opportunity to socialize, then take other classes at home toward earning a diploma. 

One national private online highschool is Keystone, found at www.keystonehighschool.com.  They are accredited and we have been impressed with their program.  Our daughter is happy with her classes, and while we do help her when needed, she has regular teachers guiding her through the classwork. 

Good luck! 

I have been a single mother for almost 16 years.  I failed miserably as a parent.  My youngest child has multiple diagnoses since age 4 that change with the breeze.  he's been on drug after drug after drug in spite of my not wanting to put him on drugs.  Our school system here insists on drugging kids that don't assimilate into their molds, though, I do know my son's behaviors were outlandish and extreme.  However, I still want to know why they can't test him for allergies as it seems to me that's a root cause of his chronic sinus and ear infections.  Why can't they do a scan to actually diagnose him properly instead of the county psychologist lying to me and telling me that the diagnosis doesn't really matter, because they have so many wonerful new drugs with no side effects....gives him risperdol which should not have been given to anyone under 18 and has potentially deadly and potentially irreversible side effects???? 

I'm so frustrated!  I am growing a deep seated hatred for life and for our society, its systems and it's government, which has permeated every facet of our lives.  I'm so angry that it wouldn't take much to send me over the edge.  I oscillate between exrremes of anger, guilt, fear, hopelessness and despair.  I feel so helpless to help or protect my child.  The things he does are so extreme and so outlandish that no one can tolerate him for extended periods of time.  I've lived in chaos for so long I don't function normally anymore.   

If I let Child Protective Services place him in a group home with wrap around services, they have to write a report to the court that I'm an unfit, neglectful or some words which will take away my rights as his parent.  I won't have a right to see him or have home visits with him, nor to have any say in his education or treatment.  They cannot place him without removing me because they are not there to protect the child from anyone but the primary caretakers and they are certainly not there to protect the parents from the child. 

Mental health doesn't want to step up to the plate and make a placement that would not remove me from my sons life and should he stabalize enough he'd be able to come home.  Though, I doubt I'd have the true right or power to say, "No more drugs!"  I got married in 2003 to a non-resident alien M.D. who was here for 30 days a couple of years ago and was shocked at the drugs he was on and questioning his prescriptions.  At the time he was on three drugs, one of which was imipramine that he'd been on since 4 years old.  My husband said that drug has a side effect of anger and violence.  geee, are you serious??? That's what we got from it!!! And the next drug was to treat the anger and violence....then I looked up the imipramine and it's not supposed to be given to anyone for over 4 months!   I truly believe deep in my heart that children treated through the public mental health system not only get substandard care, but that they are being experimented on without our knowledge or permissions.  I would bet money, if I had it, that my son and others are secretly part of trial studies on these drugs. 

My son rages, hits me, destroys property, refuses to cooperate unless there's a 'bribe' for him to do so.  He steals, not only from me but from others and stores.  He told me last week during a lucid moment of conversation that he's got a problem with stealing.  I told him last night I think he has another serious problem with lying and asked what he thought about my observation.  He first went to babytalk and noises and I told him to just stop and answer me, I want to know what he thinks.  He stopped making the baby stuff and peeped at me over the edge of the pillow, looking into my eyes as if trying to decide if he should talk to me or not.  He finally lowered the pillow with a matter of fact tone and a look as if I'm pretty dense not to see the obvious, "Mom, you have to lie to steal." 

He told me last week when trying to talk to him that he knows what he's doing and he's doing it on purpose because he's angry and I don't pay enough attention to him.  oh there's so much and so much history I don't think I can even say it all.  But, I'm afraid.  I'm afraid for him and I'm afraid for myself.  he's going to hurt me or kill me, not meaning ot or meaning it at the moment then being sorry later.  I'm not sure I value my own life that much, I feel really like the biggest failure and most useless piece of flesh on the planet, but I can only imagine what he would go through afterwards.  Even though, when I ask him what he wants to be when he grows up he says I serial killer and that I will definitely be seeing him on the news one day. 

So why is it so difficult for me to make the decision to give up and walk away so he can get help?  One I'm not convinced they can or will help him.  I think the drugs have effected him.  though, I think I've lost my ability to know what is cause and effect in his case. 

He doesn't want to live in a group home again.  He spent 18 months in one before and he was doing better, maybe, because of the strict structgure and the staff are able to force and enforce the routine and rules and to physically force compliance if necessary, where if I were to do what they do,I'd go to jail for child abuse.  Believe me, I've been told in no uncertain terms that I cannot put my hands on him even when he's attacking me, my only option is to call the police.  That's mental health's answer also...they don't want to make the placement but they want me to call the police and turn it to a juvenille criminal matter ending in his incarceration and/or placement through the criminal system.  He may be committing crimes, but it's a mental health issue!!!  Child Protective Services will take him if I tell her to write that report (yes I'm a monster he needs to be protected from) but his social worker wants me to put it back on mental health by taking him to crisis.  I've done that since he was four years old.  In all of those years they only hospitallized him twice for 10 days which resulted in taking him off of all of his medications, giving him a new diagnoses and a new medication and releasing him no better than he went in. 

I live in a house across the street from an apartment complex.  One guy has busted my door down coming after Chris, his brother - in -law broke it down a few weeks before that and it was only my quick actions that saved my son from a beating.  A month or so later that same neighbor attacked him in my front yard, throwing him against teh garage and holding a knife to his throat.  That neighbor has threatened his life and my older son's life a few days before that.  Just a week ago I was in the ER twice due to adverse reactions to the risperdol in which he was having uncontrollable jerking and stiffening of his limbs and trunk which terrified me.  Two days after that my neighbor in the apartment next to the other guy thought it was funny to shoot the neighborhood outcast.  This grown man first shot my son in the chest with a plastic BB that left a red mark.  My son burst into the bathroom with his shirt up to tell me the guy had shot him.  I told him to stay in the house as soon as I'm off th toilet I'll go take care of it.  No, he didn't listen, he went back out again and the guy shot him again, this time with a metal BB that sent us to the ER and is still in his hand. 

The police were called, but the officer sent out has a brother who was a mental health patient.  He went on to tell me that he is useless, became a crack addict, isn't allowed at any family member's homes and is nothing but a drain on his mother, etc.  He went on to, what I think, transfer all of his opinions about his own brother onto my son and came to the conclusion that he wasn't a credible witness so they couldn't prosecute, even though the guy knocked on my door and told me directly he's the one who shot him. 

Here's an example of one night at home.  This is what it's like 80% of the time that he is awake: 

He’s been running around with an empty camera making threats by pulling his pajama bottoms out and aiming the camera in and saying what if I take these pictures and say you molested me? 

7:30 PM  This was after a long day, the bus didn’t drop him off as usual because he told the driver he was afraid the neighbor would shoot him again.  There was something on his IEP marked not to drop him off without supervision, but they’ve been dropping him off for almost three years now and that was an error, to be corrected tomorrow.  I had to leave to go get Sonny and picked up a few things at the store on the way back along with sandwiches for dinner.  He put his hand in his pants and was grabbing his penis and rubbing and squeezing it and hitting it with a piece of plastic singing something about a monkey a naughty monkey, then moved from in front of the TV as I used planned ignoring.   Monkey, come here monkey pooh.  Monkey, Oh big ? monkey.  Oh no I didn’t say anything.   Singing Wake up wake up wake up monkeys, monkeys get up and wake up.   

7:43 PM Sonny is asleep in his room, Chris now calmed down and laid down on the floor on a blanket watching Bernie Mac show.  I am asking him to go take a bath and he’s arguing with me that his feet don’t stink   

8 pm 80 bajillion a number that’s how much money you could save, going to capital one.  What brings that up?    The little kids on that capital one commercial.  

He told me about the commercial. 

 Mom…why did Kermit the frog’s finger smell like pork?  Ahahhahaha moved away from me to the end of the couch laughing….repeated the joke…planned ignoring then he’s bouncing up and down calling Mom, mom….tap tap tap tap  Monkey monky poking my arm with a nudge/finger.  Then he went and laid down again. 

He’s a but picking monkey.  He’s a hairy but picking monkey.   Gave him his depakote and took it with a problem by pretending to spit it out under a blanket, then when I put my fingers in his tmj and opened his mouth to see them still there, he finally took them with some juice, saying, did I really take it or did I spit it in the juice bottle?  He’s a finger buttlicking monkey.  He licks his but finger.  Mmmmm yaaaaahhhh  baby it’s stinky pooh, poopyy 

8:30 pm he popped up at a fisher price commercial saying, “Mom I want that” with an excited look on his face (exaggerated).  I looked at the commercial to see the baby toy and babies about a year old playing with it and laughing.  I looked at him and said, “Oh you want a baby?”  He said, “No, I want that toy”  then he lauged/giggled with the babies. 

That didn’t get a response from me so he said he was going to pour out the sunny D because it had his medicine in it.  I said don’t pour it out because I didn’t buy it to have you pour it out.  He went outside the front door for two minutes and came back saying he pissed in it, then bringing it in front of my face saying he pissed in it, I ignored it and he then drank from it and went across the room and began talking normally abut the program on TV. 

8:34 PM  I’m asking him to take a bath.  He is ignoring me, looking at acomic book and telling me he knows what game he wants from a gameboy advance from cartoon network.  I’m asking him to go take a bath and he’s dancing to the sitcom music on tv.  “I love you, shooba dooba doo” he said.  Chris, go take a bath.  He told me he had a bath yesterday and I said he has to take at least one a day and some days he might need two.  He was trying to rub my arm and I told him not to touch me that he’s had his hands on his pecker and hasn’t washed or bathed and he then started trying to touch my face.  I moved away and ignored him.  8:37 PM he went back to the love seat and is reading a comic book. 

8:46 PM  He said his teacher’s mom died.  I said tabarak’s uncle died.  He said so what, who cares?  I said I do. He said it’s tabarak and he’s going to go to hell, he’s going to stand on a bungie chord with a razor blade and get killed and go to hell.  I asked why and he said, (because) He’s been a terrorist he cut somebody’s dick off.  He had sex with his wife and he got his dick cut off…with who’s wife?  His brother.  Fake grin, “I think it’s really funny” 

I wish someone could say something to me that would penetrate my heart so I can give up gracefully admitting that I failed instead of thining, "OK I can't live like this anymore and I'm insane now, He's out of here!" then a few minutes or hours later, "he has no one but me and if they say he's now Reactive Attachment Disorder as his primary diagnosis and I abandon him to a group home, how can that not increase his problems especially when they will give him drug after drug "cocktails' they call them and I know by fact kids are raped by other residents in the older group homes and the staff does not intervene or protect the kids.  I know that because I knew a woman once who worked in a teen group home and it was their policy not to intervene.  If my son is talking so disgustingly and acting like that, he's going to be a target for sexual predators.  However, I know I can't keep him safe from those kinds of people here either when he won't stay home and roams the neighborhood at will. 

How can I get through this, do what's best for my son and keep my sanity or should I say, regain my lost sanity?  We have a court date on Nov. 4th and I have only a matter of days to decide what to do and stick to the decision. 

I recently posted a story the other day.  I don't think what you said sounds like what my son has, but he has a genetic syndrome that affects many different aspects of being, from muscular development, to behavioral.  He has chronic ear infections and he also hurts himself often by scratching, hitting his head off the floor, or hitting himself with a toy, or he bites his hands.  I'm not suggesting that this is what your son has, all I'm saying is maybe he has a chromosome problem that makes him behave the way he does.  I wish I could help more.  So I'm just wondering if any genetic testing has been done,  or has it all been just observative?