When you feel that everyone else thinks your childs special needs are 'your fault' - Page 2 - Mothering Forums

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#31 of 45 Old 07-14-2004, 09:12 PM
 
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re:the preschool/separation thing...

when Miles went to preschool we found a co-op preschool where parent participation was not only encouraged but required. I spent quite a lot of time in the preschool until he gradually got more comfortable and was able to engage in other activities long enough to detach from me. The teacher was very supportive (we didn't know he was "SN" at the time; just very demanding and needy) and all in all it was a tremendously postive experience for all of us. He never played with the other kids (tho at that age many kids don't) but he enjoyed being there. Here's a website for the Oregon co-op organization; I was hoping they'd have a link on it to a national resource guide or something but couldn't find one. http://lefh.net/pcpo/index.htm

I'm just throwing it out there in case it looks like just what you're looking for. I know that a traditional or mainstream school where kids are expected to be independant would have gone over like a box of rocks for Miles. That co-op emphazied "child-led learning" where they give the kids the environment and let them make of it what they will and it was a perfect fit.
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#32 of 45 Old 07-14-2004, 10:21 PM
 
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pilesoflaundry It's not easy, is it?

My son is also the only one who received his vaccinations and is the only one showing signs of a behavioral disability.........if only I knew then what I know now..........*sigh*
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#33 of 45 Old 07-16-2004, 04:12 AM
 
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thank you for this post.

my husband and i read through it together. both of us cried many times and pointed at the screen saying "this mom understands."

being the mom to a special needs kid is so incredibly difficult. it was a blessing to read many many things in this thread.

i hope it is not against board rules that i posted here without an introduction. i have been meaning to register here for years but this thread drew me in immediately.

may we all find the strength and wisdom to mother our special kids in the way they need.
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#34 of 45 Old 07-16-2004, 01:02 PM
 
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resimom --

Welcome! Special Needs is where I first posted when I joined, too. There are other good forums at MDC, but this one is truly home. It is special even when I include the autism-specific groups I belong to. I'm so glad you found something here that resonates with you. The posters here are truly special.

Again, welcome,

Tara
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#35 of 45 Old 07-16-2004, 01:28 PM
 
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I haven't read all the responses but I just wanted to say - BTDT. Still there for that matter. My oldest ds (4) has issues. I am not the cause. People look at me/us and talk behind my back and I KNOW that it is thought that its my parenting style. My inlaws are staying w/ me right now and after an episode similar to what you had w/ your dd and the bbq, mil said "oh hes a special boy". Its not such a bad thing to say but the tone and sarcasm that was implied irritated me.

Right there with you mama.
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#36 of 45 Old 07-16-2004, 03:54 PM
 
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thanks for the welcomes .

and to answer the op:

yes, it is tough to hear all the judgements from people who don't get it. there are many difficult aspects when it comes to the judgement of strangers.

my son is extremely compliant. i dislike using that word but it does describe him so accurately. however, he has no sense of what is socially acceptable and what is not. he also has extremely poor gross motor skills.

they are both struggles. in some ways the social is actually easier because of his high motivation to follow rules and please. for instance, we recently discussed standing 18 inches from people when speaking to them. i see him talk to someone and then he stops and make a visual check of his distance and appropriately moves. as long as we continue to work with him i really feel he can overcome the social challenges enough to lead a happy life.

i see him struggle and it makes me cry, not only because i hurt for him but also because i am so proud of him. he puts so much effort into overcoming his syndrome. i feel like his coach. i can give him instructions, practice, etc but i can't hold his hand. when something new comes up that i didn't predict i have no idea how he will react. he does not generalize and apply rules. everything seems to be a new situation.

the gross motor skills are another issue. he is so clumsy that he hurts other people sometimes . he would not hurt someone intentionally but i still have to be very firm with him. the results are the same whether accidental or intentional. dealing with others who don't understand why i have to be so firm with him when he hurts someone is hard. on the other hand, it is even worse to deal with someone who thinks my leniance is what allows him to make such mistakes. by firm i mean saying something to him like "you can't skip through the living room on your way outside. you almost landed on her head. this could have killed her. i know you would be very sad if she got hurt. this is not acceptable. you must stay aware of what your body is doing and walk carefully when a baby is in our home" etc.

my child learns best with logic so this approach is the most effective with him. to others it may seem cruel. i am not fond of doing it, however it is the lesser of two evils. i know my son, and i know he would be devastated if someone were seriously injured because of his carelessness. of course, i am not perfect and i do lose my patience with him. fortunately (actually, through much determination and hard work) my temper tantrums are very seldom.

i am rambling, so sorry. back to the op:
it is infuriating to hear someone without a special needs child tell me that i have to make him act normal. no matter how it is presented that bit of advice hurts to the core.
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#37 of 45 Old 07-20-2004, 02:51 AM
 
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I haven't posted for awhile, but I needed to read this thread. It resonates so
much with my own experience, in a deep way, in the place of pain about
raising my beautiful ds who has AS and bipolar disorder. I will share a little
of my own story.

ds was diagnosed a year ago, to our relief. This came after years of
confusion and frustration over his "issues". We moved to Sacramento
5 years ago so ds could attend the Sac waldorf school. The concerns
began in kindergarten, when his teachers identified behaviors that needed
"assessment".
We were open to this, as we were also experiencing and observing behaviors
that were subtle, but somehow "off". The messages we were getting from
his teachers and other parents were that something needed fixing.
This went on until last year when we came out of the anthroposophic haze
we were in and had him tested by a psychologist and MD, receiving his current diagnosis. I try very hard not to trash our school and anthroposphy in general, but so much blame
was put on us about Jake's behavior-it was our relationship, that I worked,
that we ate dairy, we had bad boundaries, not enough rhythm, you name it.
Never once did our school suggest that we have him assessed by "outside
sources". We are so glad we did this, as now we understand the complexities
of his life and how to best support him.
We have always been treated like outsiders here, Jake is still viewed as "odd",
he has few friends and we are struggling. We see now that there is no
real community for us at the school-ironic in that it supports so much "community". I recently realized that we need the special-needs community,
and I especially need the company and understanding of other mothers who
really get it. One of my closest friends, while trying to be supportive, often
tells me that I am focused too much on Jake's issues because he is an only child.
So, that's my story. I have given up on the school community and plan to
make our own. Any like-minded struggling moms with ASD kids in Sacramento?
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#38 of 45 Old 07-24-2004, 02:10 PM
 
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Quote:
This thread has struck many chords with me; I have a son with asperger's syndrome and it's tricky as hell. He's always been difficult- we've limited ourselves so much in what we do as a family because we have to tailor things to what he'll tolerate. And I do get the "Asperger's syndrome? he seems perfectly normal! Don't let people hang labels on him!" on the one hand and on the other I get wierd looks and judgement because he melts down and has innapropriate behavior in public when he gets overwhelmed. He really goes through cycles with the behaviors, too- he'll have a long period of being really "aspie" and then a long period of being damn near normal. He's extremely bright also and so a real challenge on more than one level. He's also delightful and funny and brilliant company. Which it sounds as though your dd is as well.
That is exactly how we feel lalaluna. DS has high functioning autism and some days he seems so normal and others so very autistic. We take him to a weekly playgroup with people from church and people started asking questions about his behaviors, so I started telling them about the meltdowns and repeating things over and over. Some woman had the gall to say if my son was autistic then all children are autistic. I just said how he didn't start talking until he was three and other stuff. THen I asked her how she got her five kids to be so well behaved and her response was "god loves me and gave me good children". I went home and cried to dh and he wanted so bad to call and give her some education but decided that no one could educate her. I also hate how people look at me when he has a meltdown. My mom gave me some business cards to give to people when anyone makes a nasty comment they say (paraphrasing) "please excuse my son's behavior he has austism and if his behavior has bothered you that much please make a donation to an autism foundation (it has a phone number too). i would never hand one out because I would be too scared but I like the idea.
Until we had the official diagnosis we had family members tell us that our gentle discipline was the reason for his behavor and even offered to spank him for us. Um hell no! Our families are more understanding now but don't know anything about it. Anyway, I really appreciate this thread and have gotton lots of insite and comfort.
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#39 of 45 Old 07-24-2004, 02:21 PM
 
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[QUOTE=mommy2boys]THen I asked her how she got her five kids to be so well behaved and her response was "god loves me and gave me good children". I went home and cried to dh and he wanted so bad to call and give her some education but decided that no one could educate her./QUOTE]


It always amazes me how some people use God as an excuse to act in a very un-Christian manner. I am Catholic, and I have some very firm beliefs. I don't foist them on others, but they are what gets me through the really hard times. One of my beliefs is this: God sends us the children we are supposed to have. Not too many people would have the patience and desire to juggle the needs of my three special kids, but I never would have grown this much (as a parent, as a life-learner, as a human) without these challenges. My brother and sister-in-law have been blessed with easy babies (literally slept through the night at 3 months without any CIO, always happy and healthy). They would not have done well at all with kids like mine, but then, I would not have grown with kids like theirs. I don't believe it is God's will that my children have these challenges, but I do believe He entrusted them to me for very good reasons.

I know some people don't hold my views, and that's okay. I'm not trying to start a debate. I'm just trying to offer comfort for a situation that is familiar to me.

Peace to all,

Tara
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#40 of 45 Old 07-24-2004, 02:26 PM
 
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Tara- I agree with what you said completely.

I do wish that I could have been one of those people that could have been blessed with the "easy" children but I probably wouldn't have known what to do with them anyways.
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#41 of 45 Old 07-26-2004, 03:42 AM
 
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Quote:
Originally Posted by mommy2boys
THen I asked her how she got her five kids to be so well behaved and her response was "god loves me and gave me good children".


now see, if this woman had said this to my I would have had to slap her and then they'd have blackballed me from the church.

So not only do you have the kid you can handle and who needs you, you get the jerks you can handle too. :LOL

Seriously; what that woman said was appalling and unforgivable rude- not to mention SMUG. I'm sorry she hurt you- I can only hope it was ignorance and not intentional. Your son is lucky to have a mom like you.
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#42 of 45 Old 08-19-2004, 05:35 PM
 
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i'm glad to have found this thread. i've read everything, and want to read it over and over again carefully. it's a wealth of experience and knowledge. plus, a lot of the time, i just find knowing other people are in a similar place, and have had to fend off the same sorts of comments from well-meaning friends who want to try and help, without realizing there is no way they can understand without first walking a mile in your shoes and really, really knowing what it's like to spend 24/7 dealing constantly with the special issues in your life, to say nothing of the ongoing worry of medical, long term care, and support issues.

but i have good news too my godson, who will be 13 in a month has asperger's. he is my best friend's child. ironically, my second son, who is a year younger, has something called the digeorge anomally. it's a genetic problem with lots of different components. one of teddy's problems is called non-verbal learning disorder and it is a severe problem, but not a common one, or even one that experienced educators and medical professionals are aware with. i say ironic, because non-verbal learning disorder (nvld) has some similarities to asperger's, although nvld kids do not share the genius qualities of asperger's kids, and are sometimes borderline retarded.

my godson is doing so well! although he has his quirks, in many ways, he is just a normal, gawky, teenage boy. after doing summer football workouts, he told me yesterday he'd decided against football b/c he didn't feel any "passion" for it. i've spent so many years watching and worrying and it is such an enormous blessing to watch him unfold into a beautiful, sensitive if slightly reclusive, young man.

my son is also a beautiful, wonderful child, but the issues with him are more pressing and constant. just getting her registered for another school year (something i just finished this morning) is an ordeal. explaining to teachers, doing enough shtick to get them on your side and willing to help with special needs, and on and on. it can be overwhelming and it was until he was in fourth grade. although his medical stuff had to be dealt with, my dh and mil stayed in denial on the mental/emotional stuff, until i finally researched and shopped aroound and found some specialists in this area. the diagnosis was obvious and they made it--he scored on all of the indicators for nvld.

having a diagnosis makes it easier in the sense that dh and i can remind ourselves some of the problems are neither his nor our fault, and that we just have to stay on the same team and all work through them. but the well-intentioned comments, or in all honesty, sometimes mean, spiteful jabs from people who are uncomfortable with kids who are "different" can be so difficult to deal with. i sometimes wish we could just be isolated in our own space, but then i remember teddy is going to have to function is this world full of people who can be cruel (he has some pretty incredibly little scars on his tiny body from repeat surgery, including a "zipper that goes virtually all away around his body at the chest line, and is bissected by two vertical scars from other heart surgery) or just indifferent. so we try to help equip him with the skills to deal with that--i guess a good, healthy sense of humor being among them.

i'm sorry to ramble i really just wanted to say hi, and let y'all know how much i feel like i learned from reading all the posts here.
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#43 of 45 Old 08-19-2004, 10:40 PM
 
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Quote:
Originally Posted by Britishmum
Tara : "I don't believe it is God's will that my children have these challenges, but I do believe He entrusted them to me for very good reasons."
i have some bad days, but most days i feel like this .

i also have a set of twins and feel that way about them.
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#44 of 45 Old 08-20-2004, 12:14 AM
 
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Quote:
Originally Posted by rorysgirl1
having a diagnosis makes it easier in the sense that dh and i can remind ourselves some of the problems are neither his nor our fault, and that we just have to stay on the same team and all work through them.
Getting an "autism" diagnosis (or, in our case, educational evaluation) for our son was honestly the best thing that could have happened to my husband. He went from being an impatient sort-of-there father who was frustrated with our inability to take our son anywhere to being a completely devoted dad who was ready, willing, and able to do the best for his son -- including spending more time with him because he was able to get over his frustration once he understood the behaviors. Thank God (and I mean that as a devout Catholic). We have two other children with special needs as well, and I don't know how I could have endured without a teammate as well as a spouse. I know so many single moms (I forget the outrageous statistic for divorce when a child has special needs) and I am just amazed that they are able to function. Hats off to them -- and all of us, for that matter.

Tara
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#45 of 45 Old 08-22-2004, 10:14 PM
 
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Quote:
Originally Posted by thoesly
Getting an "autism" diagnosis (or, in our case, educational evaluation) for our son was honestly the best thing that could have happened to my husband. He went from being an impatient sort-of-there father who was frustrated with our inability to take our son anywhere to being a completely devoted dad who was ready, willing, and able to do the best for his son -- including spending more time with him because he was able to get over his frustration once he understood the behaviors.
That is so true for us too Tara, getting the diagnosis for Autism was a good thing. It made me realize that I wasn't some awful parent that just couldn't "control" her children. There was an actual reason for his misbehavior and it made me want to get involved and be a better parent.
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