serious question about our kids | Autism PDD
Hi, I'm new to this so I guess first of all I just want to say its nice to find a forum of loving parents of autistic children. Secondly, I just have to say that ALL of our children even autistic are different. Let me just repeat...our children are each UNIQUE and DIFFERENT. My son was diagnosed with autism at 20 months. He started speech and occupational therapy right away. These therapies did absolutely nothing for him for over a year. At the age of almost 3 I finally convinced early intervention to get him ABA. Within 3 weeks my son could identify and point to all his body parts. Within another 3 months he said his first word. COW!! (LOL, his favorite thing is animals). Now, am I saying that speech and OT don't work? Absolutely not, I'm saying that they did not work for MY son. They were not the right therapy for him at that time. And like some of you I have always said that I would not put my son on meds. But you know what as of 2 1/2 months ago my son stopped sleeping by himself or through the night. Now instead of sleeping almost 11 hours. I'm lucky if he goes 2-4 hours before he wakes up screaming for me to come lay down with him. So, when I take him to his dr's appointment next month if his dr says maybe he needs a very mild melatonin type drug. You can bet I will research it and if its not harmful I will be giving it to him nightly.Once again, I do not think therapies are bad. I think they are great.
My kids have therapies. But I just question some of the reasoning
behind it. When a child has to go to therapy so he doesn't run funny,
and he can't even form a sentence, something seems wrong with that to
me. I run funny. (Ever see that episode of Friends where Rachel goes
running with Pheobe?)
But I didn't
spend years of my life in therapy trying to run like everyone else. I
just played with my friends outside all summer, and let them rag on me
about it every once in a while. That's what kids do.
I am an adult living with ADHD, and I can tell you from experience I
wish I was medicated as a child. I believe it would have made
things so much easier for me. There are children out there that
are so far beyond the "hard time sitting still". These kids do
things that can be dangerous to themselves and to others, and they
really need something other than just unconditional love and behavior
therapies to help them. Medicine really works, if used properly
and monitored appropriately. I certainly wasn't a dangerous
child, but as an adult I am still way too impulsive for my own
good. I am now medicated and living a much better and happier
life.
Just a random question for you - - - have you ever taught or
volunteered in a classroom? If so, you know how hard teachers
work to control their classroom. Add one or a few children in the
class that are varying degrees of ADD/ADHD, and you now have an
unbelievably hard task on your hands. You are trying to teach the
class one thing, but are constantly having to redirect the attention of
a few, which interrupts the flow of class, which puts the class behind
on their work, which means that if the class is missing material they
need to know to advance to the next grade....It is a vicious
cycle.
As for loving children for who they are, I agree with you... to an
extent. Everyone has the right to be an individual, and being "normal"
shouldn't factor into things. With that being said, to see a
child act "just the way they are" and an adult act "just the way they
are" are two totally different things. Children are expected to
need guidance, understanding, and are encouraged to be
individuals. An adult, on the other hand, is expected to act with
proper decorum, understand society's rules, and carry on in a "typical"
manner like the rest of us do. By not providing children (and
this applies to all kids, not just kids with Aspbergers/PDD/Autism)
with rules, expectations, and needed therapies, we are pretty much
ensuring that our kids will grow up to be adults lacking in areas
required for daily living. I can empathize with your frustration,
but at the same time, am looking to the future and really feel that
giving kids the appropriate and much needed therapies only helps them
in the long run.
Well, I pondered this a little while, and was very interested to see other responses. After reading them all, I can't help but agree with every one of them. How can you not, after realizing the differences of each of our children? I may have had the same opinion about meds, but I don't have to deal with the behavioral issues that others do...I do know that my son has migraines so severe that he can't function on a day-to-day basis, and the end result was putting him on meds 3x day for that...the result is that he has not had one since May 16th. Great news for him... Somehow I don't think these kids like to be "out of control" either...but if they knew how to express themselves, they probably would, as it would cause themselves less dispair. Sounds like so many have done all that can be done, resort to medicine, and actually see progress...and that is a WONDERFUL thing for those kids. Maybe mine doesn't need behavioral therapy, but I'm sure others do. Mine did need something for his migraines, not everyone does, but it was specific to his needs. Before it, I was lost, he was crippled with pain and no traditional therapy was improving it...I couldn't help him. For his sake, I had no choice....and he's thrilled more than I (as far as I can tell)....his first week without them, he kept telling me "I didn't have [an] ice [pack]" and was SO proud.
All our children are different...that's just a fact. And I loved what shakes said about "what is normal"...just looking at NT kids, they're all different too. I was a visual learner, others had to take notes, still others had to study and study...without the allowances and accomodations for each of us, none of us would have fared well. The same goes for our kids. Somethings are just incredibly difficult for them, so much so that THEY don't even know why / how. And whatever "tools" we can give them is a gift.
Someone on this forum has a wonderful tagline that says "the greatest therapy is love" which I think is also the bottom line of what you're saying. I believe with this, it's providing whatever our children specifically need. There is no right or wrong way, no must do the diet or you're a bad person, no must do ABA or you're a bad person. I think it's more "if it's evident that they struggle in area A, here's some tools for area A that might (keyword might) help". My son couldn't talk, he's had speech, and now he can better express to me what he was trying so hard to before...Sensory issues are horrifying for him...so we're doing what we can to help HIM learn to regulate. Without it, he's lost. I'm lost. I need the help to teach him. If he didn't need it, I wouldn't bother. But since sunlight exists in our world...he needs to learn how to live with it and go on.
Like when they're babies, they cry....they need food, to be changed, to be held, to be fed, etc....and you cycle through till something "clicks".
I love my son too enikkibaby...we all do...and they have such a difficult time with things we all take for granted. I wouldn't trade him for the world, he gives me a great deal of joy, right alongside the difficulty, but our mission in our "mom-world" is to give them all the tools they need to survive just like NT kids....it just so happens that our kids need a bigger toolshed!!
I too am curious if something happened that preceded this post for you....maybe it's just that feeling of being overwhelmed???? Wondering will it ever get easier??? I kick myself all the time too, but deep down I know I'm doing all I can... Obviously you are too! Someone said to me that I should really do the GF/CF diet....and I sat wondering am I wrong for saying no way??? He's been through the Celiac and RAST and it's negative....I don't want to do it because it'll remove the only 5-6 foods he actually eats....it's just not for us. I'm still a good mother...I still love him like nobody's business!!! (and he's damn cute too!)
OK --- now I wrote a novel. I'm sorry about that!! I guess my main point is that you (I) just have to feel confident that you (I'm) doing what you (I) can to 'help' him...not to 'fix' him. He's fine, he doesn't need fixing, he needs love and whatever tools I can come up with that work for him specifically!
Good luck!!!! With everything and anything you decide to do!
~Lesley
I was VERY taken aback that Tammy related it to physical therapy and injuries. First of all, I thought I had made all the necessary disclaimers that I wasn't saying anyone was wrong in what they were doing. i will repeat it again. YOU are the parent. YOU know what is best for your child. And yes, I was an education major (for a year) my dad was a teacher for 15 years and has now been a principal for 15 years, my ex-mother-in-law is a special education teacher, and I have done extensive volunteer work in public schools. I know first hand what goes on. I have seen really amazing teachers, and I have seen terrible teachers.
I also have ADHD, and I am SO glad my parents never medicated me. It is not a disorder, but a personality trait. I truly feel that way. It is only a disorder if you think something is wrong with being that way. Personally, it has made me into who I am today, given me a great career, which I don't think i would be good at if I were medicated for it. Am I saying that you are wrong for medicating your child with ADHD? Heavens NO! You are their parent. What I am saying is that it is wrong for the public school system to not have a system in place that is conductive for learning for ADHD children without drugs. Can ADHD children not learn? Are they stupid? No. They just learn differently. There are a LOT of people with ADHD (and ADD) out there, yet instead of coming up with a solution on how to educate them, we drug them to make them like everybody else! Who knows what great things we are suppressing in these kids with the drugs we put into them. Luckily, I tested at a very young age to have an extremely high IQ, so i was put into a special gifted classroom where it was very self-directed. It worked for me, and a lot of other high IQ ADHD kids at my school.If we had different learning environments for different types of learners, maybe we wouldn't have to medicate.
Tammy, I in no way think you are wrong for medicating your kids. I have considered it as well. You are the mom! You know what is best for your children. What I am saying is that I wish -and maybe if enough people starting thinking this way it could happen- that autism wasn't thought of as a disorder. I am not saying this because I am tired of dealing with it, but JUST THE OPPOSITE. If I was tired of dealing with it, i would be doing more therapies, etc. to try to "fix" my kids. I am starting to think that instead of tyring to fix out kids, maybe we should be making a place for them in society.
20 years ago, if I had seen two women kissing in public, I would've stopped and stared. I wouldn't have believed people would ever be open about homosexuality. Yet now, 2005, they are. Good for them! So what if ten years from now, it is ok to see a man walking down the street a little "funny" covering his ears as he goes? (Jonah does this) And people just get used to it, the way we have gotten used to interracial relationships, homosexuality, HIV & AIDS, Alternative lifestyles, etc.
Our kids didn't choose to be this way, and I see so many autistic kids practically giving up their childhoods for their parents dreams of them being "normal."
*I am not accusing anyone on this message board* I swear! The last thing I would want is to get you guys mad at me, because you are pretty much all I have.
The autism rate is sky-rocketing. Instead of trying to make our kids fit in, and let the "system" tell us our kids need therapies, drugs, etc, to make our kids like other kids, maybe we need to make society accept our kids for who they are. THAT in and of itself would solve a LOT of our children's problems. We need learning environments specially tailored for an autistic mind. Our kids aren't stupid, just like ADHD kids aren't stupid. They just need a different situation than NT kids.
OK, now that you all think I have completely lost my mind, i will stop rambling. and PLEASE know I love all of you, and am truly sorry if I hurt anyone. It has not been my intention.
WOW. This thread is very interesting. I am one that does not believe that it is the schools job to recommend any form of medication for our children. That needs to be left for US and our childrens doctors to decide. Just my opionion. I do however believe that there are children out there that need medication to function comfortably. My oldest son is one of those children. He has ADHD and OCD. When I say ADHD I am including the hyperactivity and impulsivness that comes with this disorder. Yes I said disorder. It wasn't until recently that I started to see changes in even the medical field about the controversy of ADHD and whether it existed or not. I myself have ADHD. I was never medicated and let me tell you....It wasn't until I let my son FAIL a grade and get suspended over and over and over for behavior that was extremely unexceptable (physical violence) that I finally decided to get him help. I will live with that the rest of my life. If I would have left him unmedicated he would not have been able to control himself anywhere...let alone school. As soon as he started taking the meds....He made straight A's and continues to do so. His behavior with meds and therapy did a complete turn around. He is able to make FRIENDS...which he was unable to do so before. Anyway..I think you get the picture. I know that you are not judging anyone for their choices but I have to say that I know for a fact that if I were an educator and had my son in a classroom when he wasn't medicated..I would not be able to teach the rest of the students. I accept all of my children for who they are regardless of what problems we deal with on a daily basis. I have also excepted the fact that Me dealing with my children at home and someone else having to deal with them in a school setting is a different story. My son was not learning anything....he was hurting other children....his disorder needed to be addressed with meds and therapy.
Now about my Adam. I am thankful that I have not had a need for medication for him yet. After what I have learned with my oldest son though....if the time comes for meds...I will not hesitate. As for his therapies.....those are for HIM.....not anyone else. Each therapy that my son attends is for his ability to function and be comfortable with himself and to give him confidence. When a child can not speak properly and you give them the gift of speech therapy and they are able to communicate it is helping THEM...not society to cope. When a child has severe Sensory integration issues and you give them Occupational Therapy it helps them to feel more comfortable with their surroundings....that alone is for THEM....not society. I believe that my son will always have some oddities and that's ok. I'm certainly not looking for "normal". What I do look for though is for my son to be happy. I know that he can communicate better with therapy and how happy he is when he learns new phrases to use....how the meltdowns become less. These are all signs of it helping HIM and not society to cope. I want my son to know that I understand what he is saying and not have to get upset when I don't. I want for him to not be uncomfortable touching that food that he so desperately loves to eat. I see pain in him when he wants something so bad but will not touch it because of whatever sensitivities he has. If that is "fixing" my son then so be it. He can't fix it himself. If he could ask to fix it he would. As his mother I have to make decisions like this for him. I'll worry about the rest later. I do know that by doing what ever I can to help HIM..not society...that I can sleep at night knowing that I tried. By the way...by my post here in no way means that I am offended by anything you have said. I just have a different opinion and that's ok...LOL
Karrie
OK Public apology here!! Nikki...I was speculating, which is obviously not a smart thing to do!!! I'm actually on the same page as you, our kids don't need to be fixed...not in any way! They just need help coping, as Karrie put it so eloquently "for THEM...not society".
I myself have had a rough day, Riley's final evaluation (OT) for the *%&*@* school he goes to ... so I'm "waxing philosophical" today about all the what-if's myself....I tend to think that there are so many of you that are so much more proactive than I have been...because I'm so 'late in the game'...I myself get a little overwhelmed, and have a constant inner struggle so I just tend to spew sometimes!!! Anyway...sorry if I offended too!
I So understand where you are comming from! I felt that way early in his diagnoses.. I have said this over and over, and really struggled with putting Owen in therapy. (he is in ABA and OT and ST) there are people out there, who believe you should just let ASD kids be, that they are like a culture of their own.
I love my son just the way he is...so sweet and special. He may be in his own world some times..but it is a happy one. In life with everyone I know, and people I don't, I think they should be allowed to be *them* what ever, how ever they want to be
Things like being told to redirect his stimming play..I feel like, who am I to tell him how to play with something..if that is what he thinks if fun..why should I force the **appropriate** play on him. Then in a workshop an ST said to me..what he is doing with those toys is not PLAY it is doing something to full fill a sensory need..and he isn't **playing** he needs to be taught how to play, he wants to know how to play..he may be frustrated due to motor planning difficulties, and not able to play right with something until hand over hand shown how, but want too. He is so preoccupied with his sensory issues, he can't take the time to enjoy life.
I know really feel that I need to provide everything possible, and give him every chance to be everything every human strives to do. Isn't there something in our biology that gives us a clock, and we want to find love, and want to have children..maybe Owen will really crave that someday, and I would feel aweful if I didn't try my best to make that possible for him..
I donno..I am just rambling my own thoughts..I have struggled with all this also..This is such a difficult and emotional life..to be a parent of a special child.
Sunny what your friend did with the meds is so wrong!!! Even adults act differently with some meds. Some people might have an adverse reaction.
[QUOTE=enikkibaby]
So what if ten years from now, it is ok to see a man walking down the street a little "funny" covering his ears as he goes? (Jonah does this) And people just get used to it, the way we have gotten used to interracial relationships, homosexuality, HIV & AIDS, Alternative lifestyles, etc.
[/QUOTE]
I take great offense to the part where you said "the way we have gotten used to interracial relationships". Maybe you have a personal issue with this. I never have. That sounds like a comment from the south in the 70s and 80s and to a degree even today. I have raised my kids not to see color. We are all the same. No matter what the color of our skin is. My kids dad is milato, their granddad is African American. My father was very racist. He had only one exception. If you played for the Dallas Cowboys you were okay. And as far as I know God doesn't see color. I will give you the benefit of the doubt that when you said it , you worded it inappropriately, which is part of the adhd. And you did say you do have adhd.
As far as the running, lol, don't feel bad. I can't run to save my own life. Even tho when Gabe went down the hill on the bicycle I did run pretty good there, with no shoes or socks on and on gravel. But that is part of his impulsive behaviour. And I was told that we have to watch out for symptoms of bipolar when he gets older. And I refuse to have him turn in to what my brother is today. Even tho he has bipolar. But back to the running, sorry, never watched Friends.
Tammy
Honestly don't have too much to add. It was all said on here already.
With my 4 yr old nt dd, she was screaming all the time the first weeks of her life. We had no idea what was going on. As a first time mom w/ very little child experience, I was freaking out and my nerves were shot! I went to dr. He said it is probably just early colic. Now I personally feel that "colic" is just another way dr's say something is wrong but they aren't sure what. He also said maybe she is reacting to something in my breastmilk, and we can try to fix that. Here is how we fix it. Stop eating! I kid you not this is what he said! And then after one day of only water and dry toast, we'll add a food group every couple of days to see how dd reacts. I was like...no way! I just went w/ my own gut and took off to the store to look at formulas. I bought alimentum, a very expensive pre-digested formula. Within 1 day she stopped crying. I stopped bfing of course. And dd did great on her new diet. I knew it was probably something in my milk hurting her, but I wasn't going to put us both through weeks of hell to find out and decided to just try my own idea. Now w/ someone else they might have wanted to keep breastfeeding no matter what and this solution wouldn't have been something they would go for. Whatever works for you and your child is what matters. W/ ds I was able to nurse him no problem. I know this has nothing to do w/ asd, but I was just going off on following your feelings on what the child needs to function and do ok. I am using St for ds because I know he is as frustrated as myself not being able to communicate. He wants to talk I know it. So I will help him achieve that. I will not medicate him. I don't believe in it. But that's for me alone. I'm certain many have felt medication was a blessing for their situation (like the migraines now with that I can see how it was helpful for example). I don't feel MY ds needs it for anything. And I love who he is. I wouldn't change it. I agree w/ danielleandowen on not redirecting stims and letting them do what they like in that respect. I feel if it's not hurting them or someone else or destroying property...whatever! Just my point of view. And ds isn't dx'd yet so I just feel this way regardless. What an interesting post. Debatable w/out hostility :-) Amber *smiles a lil* ... First, realize i'm tired and i have a newborn...but pretty much i agree with what Karrie said about ... we do these things for OUR KIDS, not for society... THAT is the reason you do it... if for some reason you need a reason behind giving your child the best possible odds.. I also agree with Tammy about the interracial thing and the homosexuality... my sister is a Lesbian... and to be honest... she's discriminated against every day of her life (she's very butch *smiles*...and i'm allowed to say that she told me so *laughs*). Sunny and others... Actually Everyone... here is something that you all need to always remember... Every child on this spectrum is Different... no two are the same. Because althought i can appreciate what you are saying Sunny as far as asking your daughter what she wants to eat.... you could never ask Zach that, first of all He wouldn't understand most of what you are saying.... and second of all He wouldn't be able to tell you even if He did understand. Everyone here always needs to remember that none of our kids function at the same level. I'll be honest... I haven't been on the board much, which is probably a mistake.... but i haven't been here much, because i'm having a hard time right now. The realization of who Zach will be is hitting me hard. And honestly... it's hard for me to grasp as a Christian woman. Zach is diagnosed severe.... and every day it is more apparent. He had a major meltdown today when i tried to take Him out to eat with his grandma. Having to hold your three year down, and barely being able to do it because He is too strong for you while everyone is staring at you isn't the funniest thing to go through. And although i can appreciate what you are saying and sympathize with what you are feeling, because believe me, dragging Zach to 4 evaluations in one week was not my idea of summer fun... i do it because i want to give Zach the best possible odds of functioning at a higher degree. Lets just remember that there are some moms on here who deal with kids who are low functioning and would give thier right arm for the magic puzzle piece.... untill that puzzle piece comes, i'm gonna at least try most any therapy i can. (*smiles* with the exception of some of the more drastic things... not sure i will ever do the diet or chelation, but who knows.... i'm not completly ruling it out.) Also, lets all take a minute and close our eyes.... think for a minute what it is like to be your child....think what it is like to not be able to speak what you are thinking...... think what it is like to have the lights to bright, the sounds to loud, the touch to hard or to soft....the smells too strong.... think what it is like to not be sure which foot to move next, or which hand to use to pick up that object.... think what is like to have someone speaking to you, but you only understand a lil' of what they are saying. I try everyday to take 5 minutes and think what it is like to live in Zach's world... and that helps me help him... and always reminds me of WHY i do what i do for him. WOW .....Michelle and Sarah you guys couldn't have said it any better!! I am actully sitting here sobbing. I have always been kind of a selfish person could be because I was a daddy's girl or because I was the baby girl of the family... anyhow since the dx of my son I have changed so much I realize how much I took for granted with my Nt kids and how life can throw you a curve ball when you least expect it .. Michelle you are so on with all you said about the "perfect world" and Sarah I have never closed my eyes and put myself in my sons shoes but you bet your a** I am gonna everytime he is having a hard time coping with everyday life. You guys are all such an insperation to me. Tammy what you said about who will take care of my kids if I am not there..wow that hit me hard and it is the bold truth they do need to beable to cope and live with out us someday. Nita OK- First off i would like to say that My oldest daughter is 7 yrs old! She Has ADHD! My daughter is very smart! If it wasnt for the meds she takes she wouldnt be able to pass grades in school! She almost failed kindergarden she knew everything that she needed to know to pass but she couldnt go the extra mile to put it to use at school, She was very distracted! She is on Straterra and she acts like a normal child it doesnt make her into a zombie like Ateral did! She is very active! In her case the meds have worked for the better in her life! I wasnt crazy about putting her on the meds at first but it seemed to be what she needed! Veroniqua has PDDNOS we do not want her to be like everyone else, We do want her to be able to communicate with us! We elected to put her in a class of 8 students with some dianosis on the spectrum! They range from high functioning to low functioing! She went for 3 weeks in june to get adjusted t the setting for the school year and we noticed a big difference in her! She talks alot more now, at times we can understand her! She is trying which is all we want! I get tired of the pressures from the DRS and Everyone else who wants us to make her change over night! Our daughter is an amazing child with a Unique personalitly! I dont want her to be like every other child i want her to be herself and not worry about being like everyone else! If we were all the same the world would be boring! I do agree about everything you said! Meds can be good and can be bad it just depends on the child and situation! As for veroniqua there will be nothing other than the Speach Th. We have elected for nothing else other than preschool with children who are like her so she doesnt have to feel like she is alone in the world! There arent many children in our area on the spectrum that we know of! I get tired of trying to explain why she is the way she is and i just say veroniqua is veroniqua like it or not! I love her the way she is and i wouldnt have her any other way [QUOTE=enikkibaby] I take great offense to the part
where you said "the way we have gotten used to interracial
relationships". Maybe you have a personal issue with this.
I never have. That sounds like a comment from the south in the
70s and 80s and to a degree even today. I have raised my kids not
to see color. We are all the same. No matter what the color
of our skin is. My kids dad is milato, their granddad is African
American. My father was very racist. He had only one
exception. If you played for the Dallas Cowboys you were
okay. And as far as I know God doesn't see color. I will
give you the benefit of the doubt that when you said it , you worded it
inappropriately, which is part of the adhd. And you did say you
do have adhd. As far as the running, lol, don't feel
bad. I can't run to save my own life. Even tho when Gabe
went down the hill on the bicycle I did run pretty good there, with no
shoes or socks on and on gravel. But that is part of his
impulsive behaviour. And I was told that we have to watch out for
symptoms of bipolar when he gets older. And I refuse to have him
turn in to what my brother is today. Even tho he has
bipolar. But back to the running, sorry, never watched Friends. Tammy In Arizona , in some cities, an American Indian cannot go into a bar and order a drink because it is still on the books that that is a law. In 1999 Slavery was still legal in Mississippi because that was still on the books. In some states interracial couples cannot get married because that law is still on the books. I have read my history books. And I grew up in the racist south. And there is still racism in this country to this day. Look around you. I have personally had racism practiced against me by the police here. I was taking their grandfather home one night and the only reason the cop stopped me is because I was white and the granddad is African American. There is this big push in this country right now to outlaw Gay and Lesbian marriages. Yeah we have come a long way haven't we? Tammy Hey all,............. yesterday was a bad day I couldn't focus enough to concentrate on reading through everyones posts..... I agree with some of what was said and disagree with some too. WHY? Because Everyone of us are different and each of our children, our schools, our support systems, our doctors are different. In a perfect world our kids wouldn't stand out. In a perfect world the schools would do what they are supposed to and provide the supports our kids need to be able to learn maybe offer a class whit 4 teachers so it can be split up to teach the visual learners here the audio learners there etc,.... Heck if I could even get the school to realize my son's autism causes him trouble staying focused and he isnt ignoring the teacher by staring out the window or that he needs special ed classes for certain subjects I'd be thrilled to get him that. Problem is a NT child can usually adapt to the situation around them and / or understand that they need to just get through it. But SOME kids on the spectrum cant understand that. There are ASD kids who make it through life never diagnosed.... they may struggle a bit and maybe the parents hire them a tutor and they are ust thought of as a difficult child or shy or a lil weird. Hey if that kid was able to function and get decent grades and go on and function in society as an adult without help great for them. There are also kid who from birth scream to be touched to be fed.... who can't eat regular food, who dont look at you, dont speak, just spin and rock all day long and moan. And there are kids everywhere inbetween. We have to remember each child is different they have their unique struggles, their ways of learning, some are verbal, some arent ,some sign, some use an electronic communicator, some need medication, some don't, some sleep just fine, some can't, some some have sensory issues to taste and smell some have it to sight, some have it to touch some have it with everythign, some have low muscle tone, some have low frustration tolerance, some have problem solving skills, some aren't able to problem solve. The point is each child has their own degree and severity. Each parent has their level of ability to cope with their child's disability, (and yes I say disability which it is for those who are NOT ABLE to function in society - if you cant communicate you cant function) Some parents have a great support system to give them a break to re coop to be able to go back and help their child or give them the strength to keep going or to be able to handle the next set of meltdowns. Some people have no one but themselves and more than one child being pulled in so many different directions and are having the life sucked out of them doing all they can to keep their kid and family together. In a perfect world we would all have help with it and get a break DAILY. Sarah Said something that I often feel.......... and do myself.......... Also, lets all take a minute and close our eyes.... think for a minute what it is like to be your child....think what it is like to not be able to speak what you are thinking...... think what it is like to have the lights to bright, the sounds to loud, the touch to hard or to soft....the smells too strong.... think what it is like to not be sure which foot to move next, or which hand to use to pick up that object.... think what is like to have someone speaking to you, but you only understand a lil' of what they are saying. I try everyday to take 5 minutes and think what it is like to live in Zach's world... and that helps me help him... and always reminds me of WHY i do what i do for him. [/QUOTE] Each of us need to do what is best for our child, our family, our finances, our life. Im not going to medicate my child with an antibiodic to prevent him from getting strept throat, but yes if he is screaming and having horrible meltdowns banging his head to where he has goose eggs on his forehead and bruises daily then yes Im going to see if medication can help him through it. The same if he is screaming and obviously tired but can not sleep but maybe 4 hours out of 24, I will look into a medication to help him, because we all know how we feel when we only get a few hours of sleep. I DO NOT FEEL it is up to anyone else to decide to medicate my child BUT ME, but we also need to realize that there are parents out their in denial over their kids disability. Parents who refuse to allow their child to be evaluated or to be diagnosed. Parents who refuse to consent to their child having an IEP, and Im sure Nikki your dad has mentioned it. Its very hard, and its a fine line, because to each of us our child's behaviors and struggles are autism. Sarah mentioned all these things about Zach and as I read it I though WOW thats Tyler! Sarah I just want to tell you theres HOPE for Zach! So hang in there! I know its hard especially with a new baby. Marissa was 15 days old when Tyler was diagnosed. The thing is,.... I have lived all these years with Tyler being TYLER. He is who he is and I love him with all my heart. I wouldn't change him for the world because he is honest, and predictable, and just so sweet and loving. (He has his other side too LOL) I go through the days treating him as my son not as an autistic, but I do have to keep in my mind that he is autistic and have that patients when he starts to flip out and hit himself and scream and bite himself because I want to keep going in a store and hes stuck on reading about a new video game perhaps and I have to decide whats more important to make him move ahead and deal with the meltdown or to say ok til you finish that page or til I count to 100 or 3 minutes and set the stop watch. We have to pick our battles. So life with Tyler seems like just a reg life to me..... and I no longer notice the way life has adapted to himand his needs because its routine for us to do it now. But when I rarely do get to see a friend or someone else might watch him I find myself having to explain the way things have to be for him and realize how I am preparing him for the changes and it becomes apparent how he still doesnt fit in. He is teased daily at school which causes him low self esteem, depression, anger, frustration etc. The teachers don't see his stress and anxiety, and he is unable to self regulate, problem solve, or verbalize his frustrations, nor communicate his needs. So what happens is he comes home to his safe place and he explodes and he can't function to do his homework or be a part of the family. He screams and has meltdowns, he can't do his homework, we can't go to the store or the park, or even play catch outside in the yard. He can't focus to play a board game.... all he does is bounce on his therapy ball, spin in a chair, jump on the trampoline, or zone on TV cartoons and video games. The slightest change sets him off..... and the frustration causes him problems sleeping as well as other things. So we need to do what we can for our kids. ABA doesnt work for every child, butfor some its the only thing that does work, same with meds and ST OT PT Sensory Integration and so on.......... Nikki I have been there and thought to myslef why keep going with the therapies because Im worn out or dont see it helping..... Sometimes I have to stop just to give him and the rest of us a break from all the therapies. But it gives me that time to regroup myself and come back full force ready to give it my all again. I have not taken offense to your opinions. if your boys are erbal and learning to communicate without ST thats awesome, if they are able to listen and follow instruction and sit and so forth without behavior therapy again thats awesome..... If they sleep without meds and dont have major meltdowns and arent self injurious consider yourself lucky. I think its great! But some kids cant manage without meds, or without the therapies and as a parent its our job to do whats best for our kids but never to be forced into it. Thats why on the IEP you can consent to just certain parts of the IEP if you choose. Im sure you are doing what you feel is best for your kids and having twins and both being on the spectrum Im sure what one needs the other may not. The thoughts that keep coming to my mind ............ therapy.... they say early intervention is the key. and how far they progress within the first few years of therapy is the best indicator of how well the child will be able to progress and function in society as they get older. Do I feel that means to not allow them to be a child and play? NO I think it means my days are going to be longer and harder and I need to be more creative. I wish that society could accept these kids without them sticking out but can you imagine without meds or therapy a classroom where you're trying to take a test and you have kids who are spinning and rocking and humming and tapping a spoon on the desk so forth? If that was a regular occurance no one would be able to concentrate and function..... I think the whole thing to all of this is AUTISM AWARENESS! Like you mentioned things that society didn't accept decades ago. Unfortunately society still discriminates.... but the more we make a stand for our kids the more people we educate the more people who eventually wont stare or condem our kids for wearing headphones at a fair and so on, but Unfortunately we don't live in a perfect world and there will always be people who stare and discriminate. I say educate them! Ok steps in to do some Mediation... Lets all take a deep breath and a step back.... Nikki, i don't think Tammy is saying you are a racist.... if you both will put aside your personal feelings and read what is actually being said.... Tammy is saying that this country is not as far ahead as we all would like to believe it is... she is not saying that you are anything... she is saying that we all shouldn't sit here and be blind to the unsaid feelings and thoughts of people in this country. *wonders* did anyone actually read my post.... because i was trying to bring us back to the topic at hand.... anyways.... As i said... my sister is a lesbian, we live in Wisconsin, one of the most liberal states in the country, in fact... Milwaukee has the biggest lesbian population in the nation... yes even bigger than out in Cali. Now knowing all this... if this country is so reformed.... why is it that just a few months ago my sisters life was threatened, by someone around her own age??? Why is it that in the supposed liberal college town she lives in... she is the only "out of the closet" gay or lesbian??? I don't think anyone here is actually calling anyone anything... we are just saying that things are not always what they seem. Tammy I think Nikki's point is just that she wishes what we all secreatly wish everyday.... that our kids were the "normal" ones and that the rest of the world was not. I think we all have these thoughts now and then.... even if we repress them. Now I will state exactly what I stated in my last post.... Everyone needs to remember that our kids all function at different levels... for example, I have a friend in real life... Her son is 8 years old, He is DX pdd-nos and suffers from seizures, However... He didn't walk till He was 5 and still isn't potty trained and doesn't speak, but signs and is very loving and social. I have another friend who's son is 4, IS potty trained, walked at age one, and speaks, but don't dare come near him if you are not immediate family. My son's tantrums are the not the same as Tammy's boys or Michelle's tyler... Zach's stims are not the same as other kids on the spectrum. Even the REASON why he has a tantrum or starts stimming are not the same as any other kids..... SOOOOOO in conclusion.... Nikki, if you don't want to give your children meds, or give them behavioral therapy...(By the way... ABA is not the ONLY behavioral therapy there is out there).... then DON'T ... period... they are your kids..... However something that Tammy said that i believe was overlooked by most here..., and even though it may be hard to think about is this.... You and the twins' father will not always be here.... and with that realization comes the thought of who will take care of my kids when I'm not here or can't. And believe it or not *smiles* no one loves them or has as much patience or understanding for your children as you do....not even grandma and grandpa *smiles*... which means.... that you as a parent need to give them some coping skills (behavioral skills) to deal with people OUTSIDE of you and those close to them. That is just the fact of life, plain and simple... unless you plan on living on a deserted island.... as your children get older, they will have to deal with other people in some shape or form. The other thing is this.....I know with Zach.... He doesn't like being in his world all the time.... He wants me to pull him out, to teach him how to do that himself....because quite frankly He doesn't know how yet.... but behavioral therapy and other therapies like ST, OT, PT.... even medication if it ever comes to that... can help. They can help him cope, help him leave his world sometimes. I agree with pretty much EVERYTHING Michelle said. It is always up to you what you do with your child... and please do not take offence or be hurt by anything I am saying... that isn't my intent... I'm trying to be supportive with an alternative outlook. *smiles* thank you so much Michelle for your words....
Ok why in the WORLD are we going into topics about racism and gay and lesbians?! That's a whole other message board. I think things will make more sense if we stick to the topic which is our children. I just started getting confused as we all flew off the track and forgot what this was even about for awhile. Point is, every child is different. Every parent is different. Asd or not, each child deserves the best chance to enjoy their lives. Parents must make the choices to ensure that, whatever it may be. Won't be the same for each. I agree w/ michelle a lot. I also agree w/ enikkibaby on how she feels. I can see where everyone is coming from, and I think all of you are correct. I don't even look at my 2 children the same. I may not treat dd the same as ds for reasons of age, comprehension, etc. Sometimes I feel bad about that, but dd is great and really seems to understand why. She even says things like "ds doesn't understand the same." She is a very sweet and intelligent 4 yr old. So just go w/ what each child's needs are that will ensure they have the love and support they need to be happy and functional in their lives. Enikkababy I'm sorry your post got so crazy and off track. I was not offended by anything you said and I understood the point you have been trying to make. I really liked that you felt safe enough in here to make this post and get things off your chest that you have been feeling. I'm sure it was hard to do.
Amber celebrating...that was very sweet and well put
Amber hello, my son is 19. i love his personality. he if funny and loves life. what i don't like is autism. he is very happy right now. that is because i have done everything to get him the help he needs to cope with the world. as much as you want to believe that your children are normal it is not that way. we need to get our children the therapies and modalities to help them cope in our world and learn how to function in society. i would never change my sons personality and i accept him for who he is but i will do everything to help him function in this world
Be/c someday he will be a teenager (God willing) and when that days
comes, he will look at his peers and compare himself. he'll check
out some girls and want them to find him attractive. He'll think
about his future and wonder what's in store for him. He'll see
groups of friends going to the movies, to the mall, going for their
drivers licenses ... and he'll want to join them.
This is an imperfect world filled with imperfect people -- but it's the
only world we've got and, like it or not, our children have to live in
it. The world isn't going to change for them ... they have to
learn how to cope in this world. Just as we all do! I want
my son to have the confidence to someday walk up to a pretty young lady
and ask her to dance. I want him to not only have the words but
also the coordination to do it. I want him to see a future for
himself and be able to attain it. I want him to have the
wherewithall to pick out my nursing home (and it better be a good one!).
Does the therapy infringe on his childhood? Maybe. But what
sort of childhood does he have when he doesn't know how to play?
When he doesn't know how to make friends? When he can't tell me
his basic needs? When he can't climb a tree, ride a bike ... wipe
his own butt, for goodness sakes!
So that's why I take Luke to therapy ... and if it gives him the
opportunity to accomplish everything that he wants to accomplish in his
life, then I don't regret a single second. 
P.S.: And I don't take offense at anything Nikki said either. 
It ounds like everyone is very tired and at alosstoknow what to say or how to process all of the variable thought and emotions that we go through on the spectrum. I heart got heavy for all fo you that felt offended , misunderstood, or alone. I thnk that it's time for a group hug and remember that God doesn't make mistakes, and that our childen are not consolation prizes. God did give us these beautiful children to love and protect. Can we agree that living on the spectrum has more questions than answers and that at the end of the day the one question needing to be answered is "did I love my kids today with all of my heart?" If our hearts donot condemn us, let us lay us down to sleep and rest. Tomorrow's strength will come tomorrow. It is 10p.m. here. I will take one more peek at my sleeping angel and rest.
So what if ten years
from now, it is ok to see a man walking down the street a little
"funny" covering his ears as he goes? (Jonah does this) And people just
get used to it, the way we have gotten used to interracial
relationships, homosexuality, HIV & AIDS, Alternative lifestyles,
etc.
[/QUOTE]
I am sorry, but how on earth did you take offense to that? How did I
word anything inappropriately? i have absolutely NO issue with any of
the things I listed, but forty years ago people were being hung
for it. THAT was my point. i have absolutely NO idea how I could have
worded that any differently. I never mentioned anything about having a
problem with interracial relationships! I am saying that once upon a
time it didn't fit into American society. If you have a problem with
that, read a history book. I have to admit, Tammy, I feel like you are
going over the top here to attack things I am saying that are way off
topic. First you attacked me on therapies, and acted like I thought
blind people shouldn't be allowed to get help to live daily life. Now
you are calling me a racist. That sucks. I don't even know how to not
be truly hurt and offended by that.
I was simply proposing a different world view of our children. And if
we don't start it, who will? I understand all of you parents saying
that your kids need meds to learn in school. I am NOT judging that. If
my boys needed them, they would get them, and they might someday. What
I am saying is that it is sad that we have to medicate our kids just so
that they learn like everybody else. I don't see how I didn't make that
clear enough. I don't see why there can't be a way to let our kids
learn in the public school system, in their OWN way. THAT is the point
I have been trying to make.
I am a left-wing Hillary supporting Liberal for the record, and I have
NEVER been called a racist. I am so incredibly hurt by that. Benefit of
the doubt or not, you would have to be LOOKING to attack me to get that
from what i wrote. I am going to take a break from writing on here,
until I figure out how to deal with this. Racist? I can't get over
that...
I am a left-wing Hillary supporting Liberal for the record
[/QUOTE]
Now- I take offense to that!- HAHA. Just kidding!
Seriously, I think there are a lot of valid points here. My child has a
serious neurological probelm- he's not just a little "quirky" are
"different". Sure at 28 months when he's stimming or flapping or having
a tantrum-it's cute and we sometimes laugh at it. But without
treatment, one day he will 18 years old with limited language skills
and he could be violent. The tantrums, stimming etc won't be so cute
anymore. He may need to to be institutionalized and medicated. That's
what I'm hoping to avoid with treatment.
Every parent one day realized their child ( NT or ASD) is not
going to be who they dreamed they would. That their child has to follow
their own path. So I guess your question is where do we draw the line?
If my child is a visual lerner and has auditory processing difficulty-
why should I force him to learn through didatic teaching. Instead he
should be given a visual syllabus to learn the material.
My goal for treatment is not to make him NT. THere are certain autistic
traits I hope he keeps. I hope he never cares so much about what other
people think. It will make him immune to peer pressure-LOL!. But I do
want him to understand his actions affect other people.
But your point is well taken. There are children that have such mild
symptoms- should they really be diagnosed with ASD? And when do we stop
treatment? We all have strengths and weaknesses. Growing up, I was very
good at math and sucked at writing. Did I have a learning disability-
maybe- but does it matter. I made through school okay. I was shy and
usually had 2-3 close friends. We need to stop expecting perfect
children. Okay I'll stop rambling now...
That was so out of line and I am done. You all know what I am talking about.
[QUOTE=ZachiesMom]
no offense intended...
i agree with you 100%.
maybe some of that stuff is right for these other kids. i'm not their
parent so i dont know. but i know what is best for my child. a lot of
that extra stuff? not gonna happen. i had a battle with the mom of a
boy in my daughter's class. she put her son through hell and back, with
doctors and medications and therapies. then she demanded that i do the
same with my daughter! she even gave me her son's medications to give
to my daughter!! i gave her the meds back and told her to shove it. 
there are always special circumstances for my daughter because of her
disability, but for the most part i am raising her as a normal child. i
talk to her like she's normal. i take her shopping like she's normal. i
want her to learn what being a normal child is all about, rather than
always having everything different for her. i guess some people would
call it "tough love" or "a difficult way of teaching her" but its what
works for us. so far, so good! she's happy, healthy, and progressing.
i always find it funny when we're around somebody who is not familiar
with us, and i tell them that my child is autistic. they'll ask
something like "does she want a toy?" or "what does she want to eat?"
and i respond "i dont know, ask her!" they think because she's autistic
that she cant talk at all or doesnt understand anything. and then they
ask her and she'll answer "i want book!" or "i want pizza!"... the look
on their face is always priceless! she's not always as different as one
may think.
i also wanted to add that i've been very lucky with our schools. they
have never even spoken about medicating my child. so far, it seems as
though they're trying to do everything they can to avoid having my
child be medicated.
I have been doing a whole lot of thinking about this since I really
faced the situation I am in with autistic twins. I am a pretty liberal
person, and my whole life I have seen school medicate kids and try to
train them to all be like everyone else. We have posters in our schools
about "being special" and "standing up for what's right" etc. Yet when
a child IS different, nobody wants to deal with him/her.
I made up my mind a long time ago that if a teacher ever tried to make
me put my kids on meds because they were ADHD, I would never do it. now
don't get me wrong, I am not criticizing parent putting their kids on
meds at all. As a parent, YOU KNOW better than anyone else what your
child needs. But I get upset when schools try to get parents to do it
so the teachers have a drugged up class that's easier to control. I
think it is completely normal for ALL little boys to have a hard time
sitting still. That's what makes them little boys.
Anyway, I digress...
What I am trying to get at is this: what if our kids are fine? I mean,
granted, they are not like every other little boy and girl out there,
but who is? I have a very difficult time swallowing ABA, or any type of
behavioral therapy. I think children should be taught how to behave,
don't get me wrong, and I don't let my children run wild. I am afraid
this post is going to start a war.
But i am trying to say that I love my kids exactly how they are. And as
long as they are happy, I am happy. I have worried and worried, and
wondered if they will go to a regular school, and get married, and have
kids, and go to college, etc. But is it really worth dragging them
around from doctor to doctor and therapist to therapist their
whole childhood, just to make them "normal" so they are like a normal
adult? Because, quite honestly, I would almost rather them be how they
are. They are honest, and wouldn't know how to tell a lie. They dont
say mean things. They are honest, and caring, and smart. What if I turn
them into the kind of people I see everyday? I don't want that. I also
want them to have a fun childhood. If they need to flap their arms to
take everything in and process it, who says that is bad? I do weird
things too. Everybody does, just some people hide it better than others.
I really don't know where I am going with this. I mean, I sound like a
bad mom, like I don't want to help my kids. But sometimes I feel like I
am hurting them more than helping them. What kind of message am I
sending them? That they aren't good enough? That they need to be like
every other person out there, or at least be able to pretend? I HATE
that. I would love to homeschool them, and raise them in an environment
where they are accepted how they are, and let them be who they were
born to be.
Please don't attack me on this, I swear I am not criticizing anybody.
All of you who know me know that my kids do get therapies, and I have
done nothing but research and such for 2 1/2 years now, trying all
sorts of things. But I am getting tired of fighting my children's
personalities. I really do love them how they are.
I just wondered if anybody else felt this way, and maybe we are doing the wrong things by trying to change them....
Oh, I'm not going to attack you, not in that mood LOL and i do see where you are going with this. I know many of us say that if we had the magic wand that could take this all away we wouldn't. I'm one of those parents, i don't know anyone else but Connor and the way he is so why would i change him. the word normal is dumb, who is normal and what is normal? I know your kids get therapy, my does to, i think alot of the therapy helps them cope in the world, for my son, the aba, ot, and st help him not only function but help pave the way for "learning readiness" truth be told, it would be nearly impossible for him to learn anything new if he wasn't able to sit and attend to task. as for the meds, i truelly believe that there are some children that desperately need the meds due to self destructiveness and overwhelming anxiety and whatever else comes along. I would never get on anyone for doing what's right for their child, for many, it has truelly been a life saver. I personally don't feel that we're doing anything wrong by trying to help them assimulate into "the norm" unfortunately the world and