ode for special parents....

[onlycrazygal]

i found this in one of the groups and simply had to share it........

 

 

Ode to Special Parents

How many parents are their child's legs when they

can't walk, their voice when they can't speak, their

ears when they can't listen, their hands when they

can't write, their eyes when they can't read, their

best friend when they have no friends, their shield

when they have no defense, and see the best in them

when others only see the worse?

 

How many parents in a heart beat, have repeatedly

placed themselves in harms way? Ignoring their

child's yelling and screaming (which leaves their ears

ringing), the spitting, the kicking, the hitting, the

scratching and biting (which draws their own blood).

Parents who frantically tried to restrain their child,

while desperately trying to protect their child's head

by sacrificing their own body. Parents who faced the

horror of their child's self-destructive suicidal rage

cycle that left both child and parent crumpled in a

heap on the floor, physically exhausted and

emotionally devastated. Time healed the physical

wounds, but the emotional scars stay with you forever.

 

How many parents, in order to just survive, learned

enough about medications to work in a pharmacy,

learned enough about psychiatry to work in a clinic,

learned enough about educational law to be a law

office paralegal, and learned enough about school

district policy to be on the school board?

 

How many parents have been called so often by the

school to come pickup their child that they are now

sensitized whenever the phone rings in the middle of

the day? Between the first ring and when they pickup

the receiver, dozens of scenarios run through their

heads about what has gone wrong. Ironically the call

may not even be from the school.

 

How many parents learn not all schools are created

equal? Some schools that focus on test scores with an

inflexible "one size fits all" and "drill and kill"

approach may not be an appropriate fit. Schools where

the kids, teachers, and administration show

compassion, understanding, and flexibility maybe just

the environment where their child can thrive.

 

How many parents have not been able to find an

appropriate school and thus have put their own lives

and careers on hold, or even sacrificed them, in order

to provide their child with an enriching and

supportive home environment free from abuse?

 

How many parents have the tremendous courage to allow

their child to fail, going against every instinct,

against every fiber of their being, in order to

demonstrate their child will be left behind if

appropriate school accommodations and services are not

provided?

 

How many parents can give and give and give and give

even more, and yet, never receive anything in return

because their child lives in their own little

egocentric isolated world?

 

How many parents suffered the unbelievable cruelty of

comments from friends and family about the poor

behavior of their child or their poor parenting

skills, when these well meaning friends and family

don't really understand what it takes to parent a

special needs child? Comments that felt like a hot

poker just pierced their already battered and abused

heart and self-esteem.

 

How many parents found the inner strength to pull

themselves out of the deepest, darkest hole of

frustration, depression, and loss, in order to fight

another day, because the light leading the way for a

better future may flicker and dim, but refuses to die?

 

How many parents experienced the heartache of seeing

their child struggle tying their shoelaces and a

minute later be totally baffled and awed when the same

child comments; the question isn't if the chicken or

egg came first, but the plant or the seed? Or have

kids who spend most of their time in resource rooms,

special day classes, or sitting in the principal's

office and still score 99% across the board on

standardized tests?

 

How many parents

have the pleasure of working side by

side with remarkable teachers and administrators who

fight the same fight as you do, who do it for the love

of the job, but are faced with a fixed budget, or

worse yet a shrinking budget, while the population of

special needs kids continues to grow and grow?

 

How many parents

experience the knowledge, caring, and

loving found within local and cyber support groups

where information is freely shared, where mutual

respect is never questioned, where fellow members will

come to your defense with the passion of a 'mother

bear," where you can turn to when it appears all hope

is lost, and where you were made to laugh when you so

desperately wanted to cry?

 

How many parents

have felt their body shutter and a

chill run up their spine, their throat tighten

constricting their voice, their heart boom in their

chest as if it would explode, and tears well up in

their eyes, blinding them as they experience the

bittersweet agony and ecstasy of seeing their child

experience the little things that come so naturally to

other kids, but are truly miraculous for our kids?

Such experiences as the first steps (when the child

has no legs or lost their use), first words (when a

child's mind is trapped in an Autistic world), first

story read (when dyslexia makes words constantly move

and change), first paper (when dysgraphia makes

forming letters painful, slow, and individually),

first play date that felt safe (when previously

"friends" only teased, bullied, or physically abused),

and the first unscripted HUG from their child.

 

How many parents

have learned anyone can love a child

who's perfect, somebody who does everything right?

But that doesn't stretch your soul. Your soul only

gets stretched when you can still love somebody after

they hurt you.

 

How many parents

truly understand the pain it caused,

the cost incurred, the heroic efforts it took, and at

the same time, the joy it brought to unconditionally

love their special child and demonstrate that love

through actions, not just words, in the past, during

the present, and forever in the future?

 

How many parents

learned the painful lesson? One

voice will not be heard, two voices may get their

attention, but only the voice of many will enact

change. The voice whose message will be heard loud

and clear. The voice whose wishes will not be denied!

So take my hand and join me on this greatest of all

journeys and I promise, TOGETHER WE WILL MAKE A

DIFFERENCE!

[Guest flutter]

that really smarts

[CarerQuie]

A real kleenex moment!xx

[justamom]

I need tissues too!!! Thats beautiful

[UltraMum]

 

[bid]

I'm really sorry, but I found this patronising towards our children

 

I'm actually shaking because of some of the sentiments...they remove any scrap of dignity and autonomy from our children It's basically implying that people with disabilities have no inherent value or 'lovableness'...only a 'special' parent could possibly love them!!

 

And it's actually fairly offensive to parents with children who don't have any special needs...that sort of parenting isn't 'special' at all!!

 

People with any form of disability should never be seen as adjuncts to anyone else's existence, whether parents or professional carers (I'm both).

 

Sorry, I expect I will have offended some of you, but this has really upset me.

 

Imagine if your child read this...how do you think it would make them feel about themselves??

 

Bid

Edited July 27, 2006 by bid

[purplegail]

Hi

 

I've been watching the site for a while. It has been overwhelming to see that so many people truly understand and experience a life like mine. This poem brought tears to my eyes as it really is so relevant to some of the trying times I experience with my daughter.

 

Thanks for sharing it

 

Gail

[oracle]

I am with Bid on this one I find this and very offensive . I saw this on another group and posted that there is nothing special about me and that all parents will go the extra mile for their children 'special' or not.

 

Just out of interest the Council for Disabled Children would tell you that disabled children do not want to be 'special' they want to be just like everyone else.

 

Oracle

[Viper]

The most part of the ode is very imotive. If we could get past the bits that people don't like there are some very true and valuable points made.

 

Some parts are quite beautiful and should be looked at too. Instead of picking on the bad we can look at the good and give credit where it's due for a change.

[bid]

I'm sorry, but I feel it's perpetuating some very disempowering stereotypes even if they are wrapped up in sentimentality

 

I don't believe that people with disabilities want sentimentality...they want acceptance, inclusion, choice and equality.

 

Bid

Edited July 27, 2006 by bid

[oracle]

I don't think that this 'poem' is anything to do with what disabled people want - because I don't think that any disabled person would want to read this poem without feeling horrified and a burden to their parents. I don't wont my kids to ever feel like that. The 'poem' was written to make parents feel special - but you can't do that in this form without discriminating against disabled people.

 

It's a boat load of glop dripping with sickly sweet honey and I m too long in the tooth to have my ego polished by it.

 

Oracle

[Viper]

The whole ode is about the fight for equality for our children. The writer must have first hand expeience of the SEN world and has written about their experiences very eloquently. Don't we all encounter these stereo typical views every day? I think the writer was trying to say this is how SEN people get treated and it shouldn't be that way.

 

I think that our children know we work hard for them and we should give them credit for understanding how hard our fight is against the systems that stand in their way every day. Equality means letting them see how hard it is to get provision and help for them not trying to hide it from them. They have the right to know how the world works and how we fight to change it.

 

There are adult ASD's who have joined the fight, I hope they would not be offended by this but see it for what it is, the experiences of one person in their struggle to get what is right for their child.

 

I suppose it is all about whether you see your glass as half full or half empty.

[marshmallow]

I'm not special, I am just a person who loves their 3 children loads but is struggling, the 3 0f them are all individuals and I treat them as such. I wish I was special and 'supermum' because then I would at least be able to take them out to the park or the shops while DH is at work. (see blue badge pinned topic). I would 'fight' for any of my children but I don't want to or can all the time. I fingd it difficult. I feel that I am just 'coping' and poems like this make me think thatt I am not good enough.

[bid]

I'm with you on this one too, Marshmallow <'>

 

If anyone else tells me I'm 'special', or that my child is a 'special angel' I shall scream and

 

I'm not special...I'm completely ordinary, and I struggle, do some things well, some things badly and I make mistakes with all my children.

 

I don't want to be told I'm 'special', because I find it patronising, and it imposes a whole load of expectations that I don't want and can't carry!

 

And as an adult waiting for a possible dx myself, I do find the poem hugely offensive too Who would want to be described in those terms?

 

Bid

[mrs phasmid]

surely this has been a bit blown out of proportion and taken the wrong way. this was posted on here because a member found that it touched them and maybe helped them in some way and wanted to share it. if it touched or helped ONE other person then they have complied with the help and support bit of the forum mission statement. that some find it patronising and/or offensive surely is a personal view and, of course, anyone is entitled to voice this as are those who loved the poem, but, at the end of the day, it is only a poem, not a life statement.

 

<'>

[Tylers-mum]

surely this has been a bit blown out of proportion and taken the wrong way. this was posted on here because a member found that it touched them and maybe helped them in some way and wanted to share it. if it touched or helped ONE other person then they have complied with the help and support bit of the forum mission statement. that some find it patronising and/or offensive surely is a personal view and, of course, anyone is entitled to voice this as are those who loved the poem, but, at the end of the day, it is only a poem, not a life statement.

 

<'>

Could not have said it better myself if I had tried! Weldone Mrs P.

[marshmallow]

surely this has been a bit blown out of proportion and taken the wrong way. this was posted on here because a member found that it touched them and maybe helped them in some way and wanted to share it. if it touched or helped ONE other person then they have complied with the help and support bit of the forum mission statement. that some find it patronising and/or offensive surely is a personal view and, of course, anyone is entitled to voice this as are those who loved the poem, but, at the end of the day, it is only a poem, not a life statement.

 

<'>

 

Perhaps, but why comment on it being blown out of proportion because some people comment negatively on it? I was stating on how it made me feel because I am having a very difficult time at the moment and I am not special. If everyone stated how wonderful it was no one would comment on it being out of proportion. I feel that people should respect people having negative thoughts on things as well as positive. I am glad that some people got something positive ot of it but I didn't and some others obviously didn't and thats fair enough too

[bid]

<'> Marshmallow <'> ,

 

And I agree with you, too. I have never posted in any of the 'poem' threads before, because although they are not to my taste, I know some people like them. But this one did upset me and others, and we're allowed to express that

 

Bid

Edited July 27, 2006 by bid

[Viper]

Marshmallow. I don't think it is the fact that someone disagrees with anyones elses point of view it is the way that it is done. Sometimes there are ways of disagreeing that don't need to cause offence to the person that posted the message in the first place.

 

As is said on this forum many many times, everyone has a right to their own opinion. But does that opinion have to stampede all over the people who read it as a poem instead of as a personal attack?

[Suze]

We all experience our lives differently, our children , and our perceptions of life are all different .I struggle sometimes as a parent , that passage in the poem that related to school definitely rang true with me , and I know my son would relate to it too.I ,m sorry but I feel this poem was posted as a message purely to help those who maybe are having a bad day, to let them know they are not alone , thats how I percieved it any how.This forum confuses me alot , members post some heart breaking stories of the struggles they have with schools , getting DLA, help from social services, getting a dx, their kids are depressed and self harming, etc etc,a member posts a poem to just give a little support?? to let those parents know they are special and the gesture isn,t taken well?? I think all of the parents on the forum are special cos they have to struggle against the tide and raise awareness every day <'> .All the best suzex.

[bid]

That's it, Suze...you asked for it!!

 

ARRRRRRRGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!

 

 

Bid

[Kathryn]

Deep breath, I think.

 

I'm sure nobody posting their views here intended to cause offence to any particular member. The text in the opening post is emotively written and aroused some strong views in response. Some people will no doubt see it as a celebration of the commitment parents show their children, and an acknowledgement of the fight it can sometimes be to get the right support. Others see it as devaluing the child with a special needs by portraying them as "dependent" and a "burden". Both are equally valid responses. I personally found myself agreeing with both points below expressed by Viper and Bid:

 

The whole ode is about the fight for equality for our children. The writer must have first hand expeience of the SEN world and has written about their experiences very eloquently. Don't we all encounter these stereo typical views every day? I think the writer was trying to say this is how SEN people get treated and it shouldn't be that way.

 

I think that our children know we work hard for them and we should give them credit for understanding how hard our fight is against the systems that stand in their way every day. Equality means letting them see how hard it is to get provision and help for them not trying to hide it from them. They have the right to know how the world works and how we fight to change it.

 

 

If anyone else tells me I'm 'special', or that my child is a 'special angel' I shall scream and

 

I'm not special...I'm completely ordinary, and I struggle, do some things well, some things badly and I make mistakes with all my children.

 

I don't want to be told I'm 'special', because I find it patronising, and it imposes a whole load of expectations that I don't want and can't carry!

 

This might just suggest I'm a wishy washy fence sitter.

 

But joking aside, I think Marshmallow's comment below is worth highlighting:

 

I was stating on how it made me feel because I am having a very difficult time at the moment and I am not special. If everyone stated how wonderful it was no one would comment on it being out of proportion. I feel that people should respect people having negative thoughts on things as well as positive. I am glad that some people got something positive ot of it but I didn't and some others obviously didn't and thats fair enough too

 

One of this forum's strengths is that we can usually express our differing views honestly and openly, hopefully without feeling that we have to comply with any centrally held view of what is "helpful" or "supportive". (Bid and I actually discussed this earlier and expressed different reactions).

 

Feel free to say whether or not this ode floats your boat, and why, but please don't attack others personally for thinking and expressing an opposite view.

 

Kathryn

Edited July 27, 2006 by Kathryn

[Suze]

hey I,m glad I,m going on me hols tomorrow ................................and I hope you lot don,t end up having a butty fight at Herne Bay .Just need to say though Onlycrazygirl <'> been through alot of late so have a hug <'> <'> .Suze..........I,m off to join Kathryn on the fence

[oracle]

I never sit on the fence because getingt splinters out of your backside can be a right pain in the ass

 

Just for the record I don't think that I would dare post what my eldest thought about the poem and he is an adult with ASD now.

 

I'll stop posting now - promise

 

Oracle

[littlenemo]

On a similar note, I had a go at a friend the other day when she told me that we were "brave" for doing what we do as parents. I replied that "we just do what we must/can/can be a**ed(bothered)". It doesn't make us brave or special, just parents.

 

Her reply stumped me: "That's what I call brave."

 

It's probably just a matter of perspective - those who live it see it as normal, those who don't see it as extraordinary.

I suspect that most of us go through periods (from short to life-long) when we'd rather not be reminded that our lives are not 'ordinary' as we need our own perspective to keep our sanity/insanity intact.

 

And surely it's better to be called special than some of the supercillious patronising things we get called for being a good parent.

[baddad]

On a similar note, I had a go at a friend the other day when she told me that we were "brave" for doing what we do as parents. I replied that "we just do what we must/can/can be a**ed(bothered)". It doesn't make us brave or special, just parents.

 

Her reply stumped me: "That's what I call brave."

 

It's probably just a matter of perspective - those who live it see it as normal, those who don't see it as extraordinary.

I suspect that most of us go through periods (from short to life-long) when we'd rather not be reminded that our lives are not 'ordinary' as we need our own perspective to keep our sanity/insanity intact.

 

And surely it's better to be called special than some of the supercillious patronising things we get called for being a good parent.

 

 

Is that 'special' in the way of - "Dad, why do you dress up as spiderman and dance around in a fashion that makes Wayne Sleep look butch" type special

How's com BTW? Getting there, i hope <'> <'>

[Suze]

Totally on the money Nemo , perception and perspective .There is no right or wrong just a different perception and perspective, and Nemo hope I did,nt put words in you mouth...................OUCH!!.............................OUCH!!...............flippin splinters

[bid]

By the way, BD, who is 'Viv S'??

 

Bid

[Kathryn]

Totally on the money Nemo , perception and perspective .There is no right or wrong just a different perception and perspective, and Nemo hope I did,nt put words in you mouth...................OUCH!!.............................OUCH!!...............flippin splinters

 

You should have brought a cushion, Suze!!

 

K x

[littlenemo]

By the way, BD, who is 'Viv S'??

 

Bid

Oh goody! I get to promote one of my websites

Vivian Stanshall - a vey 'special' person!

Is that 'special' in the way of - "Dad, why do you dress up as spiderman and dance around in a fashion that makes Wayne Sleep look butch" type special tongue.gif laughing.gif laughing.gif laughing.gif wink.gif

no, that's special in the way of - "Dad, at least you're not normal like mum, she's weird!"

How's com BTW? Getting there, i hope

Stitches coming out tomorrow (well half of them anyway), so listen out at about 2pm. You should just about be able to hear him from where you are.

 

Nemo

[baddad]

Oh goody! I get to promote one of my websites

Nemo

 

Uncle Otto's marching is a 'must see'... anyone who enjoyed Baddad's Xmas wiener roast or the 'quiz show' flash movie - this is MUCH better

 

Com, good luck for tomorrow...

L&P

 

BD

[smallworld]

I have to say I just feel for onlycrazygal in all of this, she probably had no idea of the turn this thread would take, and I imagine she posted the poem in the hope that it may help someone in some way.

I had something similar happen when I posted an article from one of the papers on 'caring'.

Personally, I'm not a fan of any of these types of poem, they just don't appeal to me, me who's just had a big lump in my throat listening to 'Shine On You Crazy Diamond' in a doc on Syd Barrett

 

wac

[onlycrazygal]

hey.....anyone that knows anything about me knows that i didnt post this with wisp of bad intention.....my own personal view on this was that yes, it was harrowing, yes it was very graphic, yes there were unsavoury parts that may have been unpalatable......but for heavens sake there were so many parts i could relate to.....there were so many parts that made me want to hug myself for.....there are so many parts that brought home to me the endearing lovable qualities in my son as well as the complexities!

 

its an emotional rollercoaster parenting a special needs child, oh sorry should i take that back people, the only thing that has saddened me is the fact that as others have said people have picked up on the negative aspects of that poem......

 

may one be brave enough to suggest that if a person finds something offensive they simply dont continue to read it....

 

is it not true that many parents struggle on a daily basis with their child, is it not true that many parents have to fight sooo damn hard to get the help there children deserve.....is it not true that many parents are hindered not helped by the powers that be......hence left to cope with rages, there child perhaps depressed or destressed.

 

in answer to a previous comment no, of course i wouldnt let my child read that , as i didnt write it first off and secondly i didnt post it on here to upset children let alone parents.

 

in future i will double check that my posts dont run the risk of upsetting anyone but i had no idea that some ppl take offence so easily, it is one persons view at the end of the day , one persons angle on things, this should be respected surely even if you dont agree with the way it was written.

 

ok now im going to stick my head in the freezer compartment to cool down , humbly suggest others foillow suit as i wont be replying to any negative comments on this post.

 

hope you all get up on the right side of the bed today....

 

apologies once again....

[Viper]

hey.....anyone that knows anything about me knows that i didnt post this with wisp of bad intention.....my own personal view on this was that yes, it was harrowing, yes it was very graphic, yes there were unsavoury parts that may have been unpalatable......but for heavens sake there were so many parts i could relate to.....there were so many parts that made me want to hug myself for.....there are so many parts that brought home to me the endearing lovable qualities in my son as well as the complexities!

 

its an emotional rollercoaster parenting a special needs child, oh sorry should i take that back people, the only thing that has saddened me is the fact that as others have said people have picked up on the negative aspects of that poem......

 

may one be brave enough to suggest that if a person finds something offensive they simply dont continue to read it....

 

is it not true that many parents struggle on a daily basis with their child, is it not true that many parents have to fight sooo damn hard to get the help there children deserve.....is it not true that many parents are hindered not helped by the powers that be......hence left to cope with rages, there child perhaps depressed or destressed.

 

in answer to a previous comment no, of course i wouldnt let my child read that , as i didnt write it first off and secondly i didnt post it on here to upset children let alone parents.

 

in future i will double check that my posts dont run the risk of upsetting anyone but i had no idea that some ppl take offence so easily, it is one persons view at the end of the day , one persons angle on things, this should be respected surely even if you dont agree with the way it was written.

 

ok now im going to stick my head in the freezer compartment to cool down , humbly suggest others foillow suit as i wont be replying to any negative comments on this post.

 

hope you all get up on the right side of the bed today....

 

apologies once again....

Very well said.

[Jill]

OnlyCrazyGal <'> Personally the poem touched me in parts - the bits I didn't like I skim read. I appreciate that you posted it with the best of intentions to lift people a little in the midst of a world that sometimes judges us harshly. I thank you for those intentions - it's the reason I like this site, because we all support and help each other & let's face it, we ALL sometimes need that help and support.

 

All the best mate.

 

PS hope the peas and burgers didn't defrost whilst you had your head stuck in the freezer next to 'em Mind you, this weather, I might join you in there for a cool down, hutch over a bit there floss, got any lager?

[LizK]

I'm not really sure what I think about the poem, another fence sitter I think! I'm not really one for inspirational poems seems a bit schmaltzy but as apiece fo factual writing there were parts of that poem I could relate to. Not the whole, don't know if the whole poem can apply to one person but I don't think it is meant to be taken as a whole but a sum of parts to fit different parents experiences.

 

Would I want my son to read that in the future? No probably not. However just because I don't want him to read it doesn't necessarily mean it's offensive or wrong. There's plenty I've written or said about him in the past that I'd be horrified if he heard, how many of our posts on here about our kids would we hate them to read? Not just my ASD son same goes for my younger NT son too.

 

Lx