A Letter You May Relate To

Discussion in 'disABILITIES Community Board' started by Piper, Dec 28, 2011.

  1. Piper

    Piper DIS Veteran

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    I just got an e-mail from my daughter asking if I thought she should send this letter to her sisters-in-law. They had an "incident" at one of their homes and one SIL wouldn't let go of my GS so that his mother or father could use calming techniques on him.

    I think it is an excellent letter and asked her if I could post it here. It may help some of you with talking to your own families or friends.....or just let you know you are not alone!


    What it’s Like to Be Us 12-28-11
    By Bonnie C


    Most parents of children with special needs have run into that well-meaning, even loving stranger, that parent acquaintance, that family member or friend who shares their theory of why your child acts as they do. They say things like, “Have you considered changing his diet? I read an article (or I had a friend, or my child was behaving that way, and this is what I did.”) They talk to their friends and start their sentences with things like, “You know, it I had him for a week or two, I’d ’straighten him out’” or “If they would just discipline him…” They tell you it must be hormones.

    The comments and conversations often come from a place of love, concern or frustration, people not realizing that you yourself have been in that very place of love, concern and frustration with your child to the millionth power and degree. You yourself do not want to believe you have a child who will always behave this way. You don’t want to think you may have to stay by his side maybe for his whole life, helping him navigate social pitfalls and emotional triggers and their attending consequences. And maybe you won’t. But maybe you will, you just don’t know how the dice will roll.

    The fact is, my kid lashes out sometimes when he is overwhelmed and the triggers that overwhelm often do not make sense to others. Attention Deficit Hyperactivity Disorder, Anxiety disorder, Peer Relational Difficulties, Sensory Processing Disorder, Nonverbal Learning Disability, Mood Disorder and Pervasive Developmental Disorder as well as Intermittent Explosive Disorder are some of the diagnoses that put him in a category of having special needs, sometimes invisible as they can seem.

    As others have pointed out in various ways, hitting or kicking or name calling aren’t “special.” When people see these behaviors, they resort to all of the above comments and urge us to “do something” telling us that even if our kid has these diagnoses, he cannot be allowed to hurt others.

    I agree. My child should not be “allowed” to hurt others. Ever. And he’s not. We don’t let him think it’s the right thing to do, neither by our words or actions. If you ask him, he knows that hurting someone else is never okay. In fact, when he does it, in a fit of lost control and surge of blinding emotion, sensory feedback, and frustration, he usually has huge regret, damaged self esteem, saying things like, “I’m a bad boy, I’m bad, just kill me” when we discuss what happened after he has calmed down and is able to take it in. The people who imagine that discipline and taking away privileges for hurting someone in these cases are not seeing the part where he punishes himself the most. There is often more to the picture that they cannot see.

    And then there are the eerie times when he does something to someone not even realizing that he has done it, or that it’s inappropriate. You think to yourself, “Surely he has to know that isn’t right, everyone knows that.” But when you talk to him about why he pushed the boy off the platform, there was a logical explanation, spoken without anger or frustration: “Because it was his turn and he didn’t go.” He has an inability to think ahead to the consequences of his actions and to understand the emotions of others. And what makes it harder to understand, sometimes he does know what someone else is feeling, like when he says, “I’m sorry that happened” after I spill my coffee everywhere. But Executive functioning* is impaired.

    So to those people that have been affected by my son’s disability in a negative way, we are truly sorry. All of us. We’ve been where you are. We’ve been bitten, scratched, called every name there is, punched, spit at, kicked, endured everything that comes out of our son when he has lost control. We know what it feels like, have felt the hurt and rage it induces, the fear for delicate parts of the face, the natural indignation that follows. “How dare you do this to me when I provide everything you need and more??”

    We have also devoted ourselves to learning about what makes him tick, take him to his many therapies, treatments, doctor visits, evaluations, go to parenting groups, have professional support, stay up into the wee hours of the morning discussing what we know or need to do. We decline invitations knowing some events will be too much for all of us to handle. We even have to make painful decisions sometimes about those who don’t understand. Should we stop seeing them? Will they ever be able to be with him without judging us all?

    We spend a lot of time researching how to help him, educating others about his overlapping, often confusing conditions, and above all, supporting him, loving him and teaching him to love, to appreciate life, to be kind and generous to others.

    Nothing can prepare any of us for this parenthood journey. And sometimes our lives are redefined in ways we never expected. It can be lonely, confusing, heartbreaking. But it can also be strengthening, powerful and tender. I tell my son that I’m so glad he’s my boy. He is the best boy for me, he is the child who was meant for us, and we will always do our best for him and stand up for him when he can’t do it on his own.

    What we ask of you is to trust us. Trust that if you or your child gets hurt, we are all feeling the “right” feelings about it. (And chances are, lots of extra feelings, too.) We are working on helping our son gain control of himself. But for him, it has to be painstakingly learned, minute by minute, over and over again. It can’t be instantly punished or disciplined away. Every single time is an opportunity for him and for us to use the situation to learn. We talk about and act out what to do next time it happens. And yes, if it’s a situation in which we know he is likely to erupt, we frontload instructions about what consequence there will be if he has trouble while also teaching him alternatives to the behavior we don’t want to see. But some things you just can’t prepare for, and in a flash, it’s happened already. And so we remove him, apologize and leave. And then we continue doing everything else we do, because that is all we can.




    *The executive functions are a set of processes that all have to do with managing oneself and one's resources in order to achieve a goal. It is an umbrella term for the neurologically-based skills involving mental control and self-regulation.
     
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  3. GraceLuvsWDW

    GraceLuvsWDW DIS Veteran

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    Thanks for sharing. :goodvibes
     
  4. ccgirl

    ccgirl DIS Veteran

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    Thank you for sharing.

    It sounds like he may have hurt another child??

    My DD ended up getting a bloody nose while playing soccer and almost received a concussion from a child with a few of those disorders. Needless to say, I was not very pleased. I demanded the other child not be on the field at the same time as my DD as did the other parents. The other parents have a right to keep their child safe as well. If he truly has no concept of his actions, his parents cannot let them out of their site while around other children; as difficult as it is. What if the child that was pushed off the platform hit his head and died? As extreme as it, that can happen.

    While the letter may help a bit, it sounds like the family may already know that. They are just trying to keep their children safe as well. It's a very tough situation and I wish all your family the best.
     
  5. GraceLuvsWDW

    GraceLuvsWDW DIS Veteran

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    I don't want to start an argument here but I find your post pretty representative of an intolerent mindset. Accidents do happen and that is no reason to exclude these children from regular activities. These children do have a "concept of their actions" but are often times not as coordinated, quick responding, or able to immediately determine the appropriate action. The letter asks for understanding and tolerance. She is giving an explanation for the difficulties of the child not an excuse. Nor is she asking someone to purposely take abuse. Judgment and ridicule and rejection are not the ways to handle these children, much less anyone. I am surprised your team was allowed to exclude a player at the persistence of parents, but perhaps there is more to the story.
     
  6. ccgirl

    ccgirl DIS Veteran

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    I'm not intolerant at all as I do have family members with special needs. In my DD's case, the child came over, punched my DD in the face for taking the ball away and when she fell down smashed her head on the ground. I'm sorry, but if it is not safe for other children; that child should not be allowed to participate. As heartless as it may seem my DD could have been killed when her head was smashed on the ground. So, as you can see there was more to the story.

    There may be more to the OP's story too which is why I asked if someone was hurt. Perhaps he is continuously hurting the other children. I don't know; which is why I asked.
     
  7. A Mickeyfan

    A Mickeyfan DIS Veteran

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    I do not want to be flamed here by any means, but all children have rights, not only those with a disability. When children are playing a sport, they have a right to not be hit by another player.

    I do understand disabilities & I also see the other side of the coin. What would a special needs parent reaction be if their child was hit back by the other "child"? Not all children are taught not to "fight back"' & some children don't understand that the child who hit them didn't really mean to. It may not be intentional, but that other childs rights were violated too.

    When these special needs children become adults & are functioning in society,it is expected that they follow the law. The police & justice system don't give a flying hoot that your adult kid had an IEP that was adhered to throughout school. They don't care what their dx is, they will be arrested & prosecuted if they they are fit for trial. If they aren't, they are kept behind bars in a mental hospital until they are fit.

    Please do not take my post the wrong way, quite the opposite here. My son is 25 & Bipolar. He stopped taking his med's & will self medicate (yes mom's to young children, some have a tendency to do this) He was caught up in a drug sting & arrested with felony charges. Guess what, didn't make a darn bit of difference that he was & has been Mentally Ill with an illness that has been proven many self medicate.....nope did not matter. I have never gone this much into detail about my son on this board, but this "letter" made me want to.

    My post is not meant to put anyone down. All children have rights, not only special needs children. Parents of young children with special needs do need to realize that once their special needs child turns 18, possibly even 16 & hurts someone to where they require medical attention, they will be arrested. The law is the law. I want to say 75% of the prision (not jail), but prision inmates are mentally ill (I could be off on the exact number but I know it is well over 50%) I do not agree with our justice system for this reason. Writing a letter isn't going to help then.

    Sometimes we are in denial of the situation, yet we think we see it clearly. I used to say my son can't help he self medicates, it's a fact many do. WRONG! My son can help it. HE & he alone is making a concious decision to not take his med's & not go to a P-doc or a T-doc... It is his doing.


    PS.... I know the letters don't work with a felony because I wrote them, & so did neighbors, not to mention the attorney ;)
     
  8. Piper

    Piper DIS Veteran

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    The incident which caused my daughter to write the "essay" was caused by an adult (his aunt) teasing the child. When he had a meltdown and began calling the aunt names, she grabbed him and wouldn't let go (even after both the child's parents and her own husband told her to.) Of course this escalated him into kicking, yelling, hitting, etc. He absolutely doesn't want to be touched--major sensory issues.

    Her husband's family thinks the child should just be spanked and then he would "act right." He is 8 years old. The aunt's husband is a physician and "gets it" but others in the family don't. Their latest theory is this is caused by his hormones....I wonder what they thought caused the problems for the other 7 years of his life.


    In my DD's case, the child came over, punched my DD in the face for taking the ball away
    Although the child's reaction was harsh--s/he was provoked by your child "taking the ball away." Would you have reacted the same way if a "normal" child had done this? Often parents see the child's parents taking care of situations and think the child is "getting by" with something when the parent knows from experience that confrontation only makes things worse.

    I noticed in my years as a teacher that many times other teachers escalated a child's difficulties by reacting to things that they would have "let slip by" in other children.
     
  9. Mickey'snewestfan

    Mickey'snewestfan DIS Veteran

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    I think it's a well written letter, but I'm not sure it makes the point that needs to be made right now.

    This woman put her hands on someone else's child, without their consent, and then refused to stop when requested to do so by the child's own parents? Unless there was some huge safety issue the parents couldn't see (e.g. she's holding the child back from a rattle snake, or a baby lying on the ground) there's no excuse.

    I think there's a place for a "please have some empathy for our side of the story" letter, but this isn't it. At this point the message needs to be, "What you did is unacceptable. It will not be tolerated in the future."

    I am so sorry your dear grandchild had to experience that.
     
  10. chainkid

    chainkid DIS Veteran

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    My children are grown now and I know how difficult it is to raise a regular child never mind one with special needs. I cannot begin to imagine how difficult your life has been and that doesn't mean you don't feel your child is a gift from God. However as a mother my primary responsibility is to keep my child as safe as possible and if that means that an aggressive child is not allowed to interact with him or her due to past problems then I would expect that you would understand the other parents point of view as well. If this was an unrestrained dog in a park that is usually docile but is provoked by the inadvertant actions of a small child and then that dog attacks said child, the dog suffers consequences and is usually confined . Like someone said, pushing a child off a platform is unacceptable social behavior as that child could have been killed or worse if that platform had been at a train station.

    Life isn't always fair and all disabilitites are not viewed in the same light. When a mother sees her child in danger, she is not going to be politically correct . You are trying to give your child a rich and full life despite his special circumstances but his rights and needs cannot co exist with that of other children if his actions endanger them. Maybe when he is older he will learn to control his behavior through therapy and then he will be able to still have those same issues but find away to rechannel his aggression. As long as he is a danger to others though you will have issues with other parents who are being just as protective of their children.
     
  11. GraceLuvsWDW

    GraceLuvsWDW DIS Veteran

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    I am sorry this is ridiculous!!!

    So, with a typical child, say a 3 year old, when they bite another child at preschool they should be banned from the preschool until they learn not to bite? How will you know when they learn that if you have ostracized them?

    So accidents happen but if it is a child with a disability, the disability means they can't learn from the experience? and therefore they should be banned until they learn? How will you know when they have learned?

    Are you advocating for SEPARATE activities for "typical" children and those with "disabilities"????

    Unrestrained dog? Really? How is that even relevant?

    When/how the heck did pushing a child off a platform even get into this discussion?

    AND so sorry but the ADA says our children CAN coexist with your children.

    Sorry, I am not usually this fiesty but you have definitely hit a nerve.
    :headache:
     
  12. A Mickeyfan

    A Mickeyfan DIS Veteran

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    If it is a private preschool, yes that child can be & if the other parents insist, will be asked to leave. My DS went to private, was not aggressive & never hit or bit. When it was "quiet" time my DS would talk to himself. When they played outside on the Monkey Bars, mine climbed the fence. After one month they told me he could no longer attend until he learns to follow the rules. They also said he had a learning disability & I may want to take him to the Public School District to be tested. If he did, he would benefit from their free pre-k for children with learning disorders. I did as they suggested & found out he had an IQ of 149 at the age of 3. That was part of his behavioral problem. The point I am making is, yes, yes, yes......a child who attends private school, can be told to leave for any reason.
     
  13. A Mickeyfan

    A Mickeyfan DIS Veteran

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    I could be wrong but the taking the ball away term, I read as the child who hit her DD was on the opposing team. In soccer, you do take the ball away, that is how you "play" & is not provoking in any way :confused3
     
  14. clanmcculloch

    clanmcculloch DIS Veteran

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    In OP's situation, I don't see how the letter will make any difference. You're describing a bully and bullies won't recognize their own behaviour as being a problem. I honestly think that OP's DD will basically just have to make sure that DGS is never without somebody who will protect him when this woman is around. It stinks, it's not fair, but I honestly believe that's what it's going to come down to. DGS needs to be protected from this bully.

    As to the other issue of inclusion of special needs kids, there does have to be some personal responsibility involved in the inclusion. I know my DD13 reacts to what she perceives as slights in a very agressive manner so I won't put her in a position involving team activities that are physical because she sees the dynamic as being slighted and I have no way of knowing just when she'll lash out. I'm not even positive she would at this point but there is that likelihood. I won't put her in team sports because of this. It's not fair to her to put her in that position and it's not fair to the rest of the team or opposing teams to be at risk of her physically lashing out over what the rest of the world sees as normal team sport activity. By taking this personal responsibilty for my DD I'm also hoping that leagues do not see a need to exclude special needs kids who CAN understand the dynamics of team sports because that would be wrong. But, it would also be wrong of me to inflict my DD on the team. It really does go both ways. There are lots of activities that she CAN do and does enjoy and excells at so we focus on those activities and leave learning the team dynamic concepts to her therapies where it's safe for all involved.

    In the situation where a girl physically attacked another player over taking the ball, I have trouble believing that the parents of that girl have never seen her react that way before over that kind of situation. Where's their responsibility to their child to not put her in this position where she doesn't understand the dynamics and doesn't have the tools to handle the situation as well as to the other kids who are at risk because of it? With inclusion comes responsibility. Again, I'm saying this as a parent to a child who could potentially react without warning as this girl did.
     
  15. A Mickeyfan

    A Mickeyfan DIS Veteran

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    :thumbsup2 The attitude you have will get your DD far! You are building her confidence by having her do activities that she can handle. The worst thing a parent can do to a child is set them up for failure. Just because the ADA states they have a right to do it, doesn't mean they can. The same goes for the normal child, and if they can't, they don't. The "normal" child's parents don't force them to stay, just to make a point. You have to build their self esteem & by placing them into situations where they cannot control themselves very well makes them fell like a failure.
    Yes, there is some trial & error,but when you see the same aggressive behaviors when playing a team sport, you just don't have them play team sports.

    I work in ESE in my local school district & I have seen parents pull there children from ESE classes because they would rather have them go for a standard HS diploma. 99% of these students end up failing. They aren't capable of doing the work, but the parents insist. They don't realize, they may be taking the "stigma" of ESE away, but they aren't helping their child. I have also seen parents of Autistic students trying to keep them in the "normal" class, some make it & some don't I really hate to say this, but sometimes parents cannot accept their child for who they are. They need to accept that there are things their child will never be able to do as others can. They need to focus on what they can do & build on it :goodvibes
     
  16. jodifla

    jodifla WDW lover since 1972

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    Ah, the curse of low expectations. And you work in this field? That's a sad commentary.

    I'm a parent who refused to listen to the school's "expert" opinion. Good for my child that I did....school was flat-out WRONG, and they see that now. But if I'd thrown my kid under the bus 5 years ago, he'd be so far behind now he'd never catch up.
     
  17. clanmcculloch

    clanmcculloch DIS Veteran

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    I definitely believe that my daughter is capable of a lot and frankly she tests quite high for IQ and does very well academically. If the school ever tried to pull her from mainstream classes for anything but advanced placement then I'd be fighting. I did agree to have her NOT put in our district's equivalent of gifted classes even though she tested slightly over the cutoff needed because she really didn't need the added stress of the extra work when she was also dealing with all her ASD issues but that's the only type of holding her back academically I would ever agree to. Her ASD actually makes her very strong in most academic areas. She just needed goals in her IEP involving pragmatic language and executive functioning skills in order to acheive her full abilities in a couple subjects where these skills are becoming more and more necessary as she gets older. Many ASD kids can be very high acheivers academically. If 99% of kids with ASDs are incapable of earning regular high school diplomas then I'd say the district is failing them in earlier years where they should be learning the skills necessary to function in the classroom and then further in life beyond school. Yes many ASD kids are not high functioning, but more than 1% should be able to get a regular high school diploma. Something is seriously wrong with this.

    Yes I do know that my child will never do some things but that's true of any child since everybody has strengths and weaknesses. My child will do anything she chooses to set her mind to. We're just very open and aware of what areas include greater hurdles and we're also aware of what impacts there could be on others.

    I was not suggesting imposing limitations. I was saying take personal responsibility, especially in areas that can impact those around the child. That is very different.
     
  18. LockShockBarrel

    LockShockBarrel Pudge controls the weather.

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    As far as the other kids having a right to being safe, I agree. What I think the argument here is isolated incidents are one thing, a child that repeatedly hits and bites and kicks (with issues or without) should be removed from the setting because for whatever reason, they can't handle it and are causing harm.

    Flame away here but it's not fair for a parent to put a child with issues when they know the kid will lash out. Again, its the difference between isolated occurances and habitual behavior.
     
  19. Friend of a Mouse

    Friend of a Mouse Braille: To touch words and have them touch you ba

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    The problem with special ed is walking that tight rope of realistic vs. high/low expectations.

    I used to teach kids with intellectual disabilities. Some had other emotional or behavioral problems as well. I expected my class to behave. I hated it when another teacher would excuse a misbehavior such as hitting with the phrase, "They're MR kids, what do you expect?" I expected them to behave, and many of them did. It was not without a lot of effort, but I was told by many subs that I had one of the best behaved classes. Not that they were perfect, far from it.

    On the other hand, I had to make sure my expectations were realistic. I'm sorry, a kid with a 40 IQ is probably never going to go get their PhD or run a Fortune 500 company. There is nothing wrong with that. My expectations for my students is that they would be functional readers. They would have enough reading and math skills to hold down a job, possibly in a supported or sheltered environment if need be. Some would be able to live independently, some would need assistance from a family member or organization. There is nothin wrong with that. I absolutely wanted to have high expectations for my students, but setting the bar to be unobtainable IMO, is just as bad as setting the bar too low. There has to be a balance.

    As to the letter, that's a tough one. For the situation, it looks like overkill. This is not about the aunt not accepting the child, this is about her actions being unacceptable no matter what diagnoses or lack thereof a child has. And previous posters do have a point. I have had aggressive kids in my class. We had to take measures to make sure the other kids were safe. I a all for inclusion when it can be done properly. I also realize accidents can happen. But if a child is continually violent in a situation, that needs to be looked at. And yes, that might mean cannot participate in an activity. If I have a student who continually has meltdowns in the cafeteria for instance, I will have that student eat in the classroom. I do not put them in the environment they cannot handle and where they could be dangerous. We try to work our way up there, but I am responsible for keeping that student and the other kids safe as well. There has to be a balance between the rights of the child and safety of others. I'm not saying that the child should be isolated completely, but steps do need to be taken to ensure safety of other people as well.
     
  20. Friend of a Mouse

    Friend of a Mouse Braille: To touch words and have them touch you ba

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    I absolutely agree with you when it comes to high functioning autism. But I have known many kids who are not nearly as high functioning as the daughter you describe. Austism does have a high comorbidity rate with other disabilities, including Down Syndrome. The kids I've known that were more severe were so unable to get out of their own heads so to speak, that things like reading and math were next to impossible. Not that their teachers didn't try, but they truly would not have succeeded if placed in regular education. Believe me, it takes a lot to get kids into our self contained autism program. Most higher functioning kids are not, they are mainstreamed. But the ones there, they really do need it. I love that your daughter is so high functioning, but you cannot paint all kids with autism with the same brush. Although I will agree that if 99% of kids are not getting a regular diploma, that is far too high.
     
  21. A Mickeyfan

    A Mickeyfan DIS Veteran

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    You are taking my words out of context I didn't say all fail & I don't have or give a curse of low expectations at all. If you read what I said, you don't want them to fail. You want to build up their
    confidence & self esteem. You find what they are good at & build on it. Is that is the curse of low expectations? There are some who cannot accept, it doesn't have to be school. The example of a child who cannot handle team sports, yet a parent will continue to sign them up, are they accepting the fact their child can't handle it? I understand you don't "give up", but somethings you have to learn to accept if you see no improvement over time.
    Not every child will be able to do all they try to do, be it in school or sports. This goes for any child, not just Special Needs. Babe Ruth didn't play Basketball & Football along with Baseball did he? Albert Einstein wasn't a Soccer player? Frank Sinatra didn't sing Rock n Roll get the picture?
     

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