Ingridchicago
09-15-2005, 08:20 PM
I wonder as a parent of a ASD child if you sometimes have the same questions. Please, DO NOT MISUNDERSTAND ME, I WOULD NOT TRADE MY ANGEL FOR THE WORLD.
Why? I ate the right foods and took care of myself during gestation
Why? I did not smoke nor drank nor abuse substance ever in my life of pregnancy
Why? I was attentive not a refrigerator Mom as others would assume
Why? I hugged and kissed him all the time--love him truly with all my heart
Why? Why can't he be normal
What did I do wrong? Maybe if I did not work during pregnancy and had stressed with other things, this would have not happened.
Why? Am I being punished from God
Why me? Why my child? Why not the people I know who used substance and still ended with the Normal Child.
God only gives you what you can handle........Sometimes, it's hard.......
Why? I bought the most educational toys, read to him, sang to him......
What Happened? He was perfect the first two years.
Will he live with me, never live independently, or will he be a genius.
Why Lord?
Why did my life freeze all of a sudden?
I wanted to go to Paris for so long, but ended up Holland. Why an Autistic Child, instead of a Normal Child. Yes, Holland is beautiful, but I've always wanted to live in Paris. I still want Paris at times.
I can go on and on.....again.............DO NOT MISUNDERSTAND WHAT I WROTE, I LOVE MY CHILD, AND WITH THE SORROW COMES WITH JOY.
I AM SORRY IF I OFFENDED ANYONE.....
Why? I ate the right foods and took care of myself during gestation
Why? I did not smoke nor drank nor abuse substance ever in my life of pregnancy
Why? I was attentive not a refrigerator Mom as others would assume
Why? I hugged and kissed him all the time--love him truly with all my heart
Why? Why can't he be normal
What did I do wrong? Maybe if I did not work during pregnancy and had stressed with other things, this would have not happened.
Why? Am I being punished from God
Why me? Why my child? Why not the people I know who used substance and still ended with the Normal Child.
God only gives you what you can handle........Sometimes, it's hard.......
Why? I bought the most educational toys, read to him, sang to him......
What Happened? He was perfect the first two years.
Will he live with me, never live independently, or will he be a genius.
Why Lord?
Why did my life freeze all of a sudden?
I wanted to go to Paris for so long, but ended up Holland. Why an Autistic Child, instead of a Normal Child. Yes, Holland is beautiful, but I've always wanted to live in Paris. I still want Paris at times.
I can go on and on.....again.............DO NOT MISUNDERSTAND WHAT I WROTE, I LOVE MY CHILD, AND WITH THE SORROW COMES WITH JOY.
I AM SORRY IF I OFFENDED ANYONE.....
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Kempsmom
09-15-2005, 10:42 PM
God only gives special parents special kids!!! I am still confused as to why god feels I'm special. Some times I don't want to be special but then I remind myself that god choose ME and that is a gift! I different gift but none the less a gift. Good luck. Just keep your head up!!!
Picali
09-16-2005, 02:48 AM
Hi Ingrid
I really felt for you when I read your post. I've often felt the same way and I'm not even sure yet if my little boy is autistic. The only thing I can offer is something someone said to me when I was having a 'why, why, why' moment with her. We were talking about this kind of Buddhist type theory that we all live many lives and we 'choose' our life each time and the problems that we experience in order to grow and develop spiritually. At the time I said that I could do without learning about autism (I know that sounds awful but I'm sure you'll get where I'm coming from), plus I said why would a baby chose to be autistic; what could they possibly learn from that that they wouldn't learn from being 'normal'? What she said made me sob, and although it's hard, I do find it helps sometimes. She said sometimes we need to look further than what is in front of us to see the bigger picture (I have to admit I rolled my eyes at this point and thought 'oh shutup'). But then she suggested that maybe through this I've learnt to appreciate the smaller things (you know when they smile or ask a question - stuff that other people ignore in their kids because it happens all the time. As we drove home yesterday my little boy pointed to the sky and said "The sunshine's coming out". It's his first proper sentence - and he was right - it was! A lot of other parents hear that kind of stuff all the time and it doesn't mean as much to them). She pointed out how things like this make you strong and capable, and how you can develop empathy with other 'less fortunate' people (this is certainly the case with me). She also said that maybe our kids wanted to experience unconditional love in this life - to be loved by their mums no matter what, and that maybe they didn't get that last time around, and that they picked us as parents because they knew that we would give them that. I was in tears by this point and I'm crying again now!! It just helps me sometimes, you know? I understand exactly where you're coming from - I've asked myself over and over what I did, why us, why him, called God names and all sorts of stuff, but then I watch him playing in the sand, so content with a bucket and spade, when my friends kids are demanding play stations and DVD's and new trainers, and I watch my friends complaining about their cars/husbands/new shoes and missing the important stuff they do have and moaning about what's missing rather than cherishing what's there in front of them. It's not easy, and I do get pangs of envy when I see other people communicate normally with their kids etc, but I guess we all have to try and find the silver lining.
I have banged on at length! I just find that kind of thing helpful sometimes. I hope something there helps a little bit for you.
Lots of love
Janine
I really felt for you when I read your post. I've often felt the same way and I'm not even sure yet if my little boy is autistic. The only thing I can offer is something someone said to me when I was having a 'why, why, why' moment with her. We were talking about this kind of Buddhist type theory that we all live many lives and we 'choose' our life each time and the problems that we experience in order to grow and develop spiritually. At the time I said that I could do without learning about autism (I know that sounds awful but I'm sure you'll get where I'm coming from), plus I said why would a baby chose to be autistic; what could they possibly learn from that that they wouldn't learn from being 'normal'? What she said made me sob, and although it's hard, I do find it helps sometimes. She said sometimes we need to look further than what is in front of us to see the bigger picture (I have to admit I rolled my eyes at this point and thought 'oh shutup'). But then she suggested that maybe through this I've learnt to appreciate the smaller things (you know when they smile or ask a question - stuff that other people ignore in their kids because it happens all the time. As we drove home yesterday my little boy pointed to the sky and said "The sunshine's coming out". It's his first proper sentence - and he was right - it was! A lot of other parents hear that kind of stuff all the time and it doesn't mean as much to them). She pointed out how things like this make you strong and capable, and how you can develop empathy with other 'less fortunate' people (this is certainly the case with me). She also said that maybe our kids wanted to experience unconditional love in this life - to be loved by their mums no matter what, and that maybe they didn't get that last time around, and that they picked us as parents because they knew that we would give them that. I was in tears by this point and I'm crying again now!! It just helps me sometimes, you know? I understand exactly where you're coming from - I've asked myself over and over what I did, why us, why him, called God names and all sorts of stuff, but then I watch him playing in the sand, so content with a bucket and spade, when my friends kids are demanding play stations and DVD's and new trainers, and I watch my friends complaining about their cars/husbands/new shoes and missing the important stuff they do have and moaning about what's missing rather than cherishing what's there in front of them. It's not easy, and I do get pangs of envy when I see other people communicate normally with their kids etc, but I guess we all have to try and find the silver lining.
I have banged on at length! I just find that kind of thing helpful sometimes. I hope something there helps a little bit for you.
Lots of love
Janine
off kilter
09-16-2005, 01:55 PM
"When Bad Things Happen to Good People "
by Harold S. Kushner, excellent book. Kushner oldest son died prematurly from pogeria being some one who had tried very hard to live a good life ,even devoting himself to God he tries to answer in this book "WHY"
HarperCollins Publishers
FOR ANYONE WHO HAS EVER BEEN HURT BY LIFE
"I knew that one day I would write this book. I would write it out of my own need to put into words some of the most important things I have come to believe and know. And I would write it to help other people who might one day find themselves in a similar predicament. I would write it for an those people who wanted to go on believing, but whose anger at God made it hard for them to hold on to their faith and be comforted by religion. And I would write it for an those people whose love of God and devotion to Him led them to blame themselves for their suffering and persuade themselves that they deserved it." Harold S. Kushner
by Harold S. Kushner, excellent book. Kushner oldest son died prematurly from pogeria being some one who had tried very hard to live a good life ,even devoting himself to God he tries to answer in this book "WHY"
HarperCollins Publishers
FOR ANYONE WHO HAS EVER BEEN HURT BY LIFE
"I knew that one day I would write this book. I would write it out of my own need to put into words some of the most important things I have come to believe and know. And I would write it to help other people who might one day find themselves in a similar predicament. I would write it for an those people who wanted to go on believing, but whose anger at God made it hard for them to hold on to their faith and be comforted by religion. And I would write it for an those people whose love of God and devotion to Him led them to blame themselves for their suffering and persuade themselves that they deserved it." Harold S. Kushner
ThreeBoys
09-16-2005, 03:29 PM
Well, it's finally happened to me!!! I think I finally "get" this whole thing. I too have wondered all the "why's"...it's a tough place to be. But I was surfing for some poems on autism and I came across a page this boy wrote who HAS autism. He was asking, why do you want to change me? Don't you like me the way I am? Why do you want to cure autism, we're not bad people! And while you're waiting to find a cure and defeat who I am, I'm here waiting for YOU. I'm waiting for you to accept me and my differences and get on with it!
Now that made me BAWL!! My son Chase is 4. He is awesome. I, like you , wouldn't trade him for the world. But you absolutely need to grieve the child you didn't recieve. You got a child less than "perfect", and that's that. I need to get over the fact that there is no "cure" for what he's got!! I will not train him to be what I want him to be. Chase will be whatever he is MEANT to be. I don't want to DEFEAT what he's got. Then he wouldn't be Chase. He would be someone else completely. And I can't even PICTURE him to be "normal", y'know?? He's beautiful, mischevious and a character!!!
I finally understand this isn't a fight. Finding ways to help his health, make learning fun, and figuring these things out as we go is the only way for me and my family to go!! Not mourning anymore that somewhere along the line we "lost" him. He's not LOST he's right here waiting for me!!!! Waiting for me to embrace him and all he's about!!!!
There are definitely good days and bad days. But I'm not mourning anymore. I'm done with that and on to the next adventure with him!! I hope this helps you, it gave me a lightbulb moment.....Good Luck and keep your chin up. Revel in the things your child succeeds at even if it's as little as shutting a door that you've asked him to shut, or throwing away a napkin in the trash instead of on the floor!!!!
Now that made me BAWL!! My son Chase is 4. He is awesome. I, like you , wouldn't trade him for the world. But you absolutely need to grieve the child you didn't recieve. You got a child less than "perfect", and that's that. I need to get over the fact that there is no "cure" for what he's got!! I will not train him to be what I want him to be. Chase will be whatever he is MEANT to be. I don't want to DEFEAT what he's got. Then he wouldn't be Chase. He would be someone else completely. And I can't even PICTURE him to be "normal", y'know?? He's beautiful, mischevious and a character!!!
I finally understand this isn't a fight. Finding ways to help his health, make learning fun, and figuring these things out as we go is the only way for me and my family to go!! Not mourning anymore that somewhere along the line we "lost" him. He's not LOST he's right here waiting for me!!!! Waiting for me to embrace him and all he's about!!!!
There are definitely good days and bad days. But I'm not mourning anymore. I'm done with that and on to the next adventure with him!! I hope this helps you, it gave me a lightbulb moment.....Good Luck and keep your chin up. Revel in the things your child succeeds at even if it's as little as shutting a door that you've asked him to shut, or throwing away a napkin in the trash instead of on the floor!!!!
connersmom1
09-16-2005, 11:26 PM
Hi... I recently stumbled on a song that seemed to fit this situation and answered a lot of my questions. The song actually begins about a child who is born prematurely, but I felt that it really also fit the diagnosis process:
HELD
Two months is too little,
They let him go
They had no sudden healing
To think that providence
would take a child from his mother
while she prays, is appalling
Who told us we'd be rescued
what has changed and
why should we be saved from nightmares
We're asking why this happens to us
who have died to live, it's unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
and you survive
This is what it is to be loved and to know
that the promise was that when everything fell
we'd be held
This hand is bitterness
we want to taste it and
let the hatred numb our sorrows
The wise hand opens slowly
to lillies of the valley and tomorrow
Chorus
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior
Chorus
I still have bad days. A lot. Over a year later sometimes something happens that sends me back, staring into the face of my worst fears. A lot of people say that God will not give us anything that we can't handle, but I think that's only part of it. For me, I know that I could not handle this without God holding my hand. When I pray, I pray that he protect our son. When I am scared, I remind myself that God said that he is our father, and that he has plans to help us and not hurt us. Autism is the hardest thing I have ever had to face. It is also the thing that has forced me to grow and rearrange priorities and really learn what it is to trust and love God. I just wanted to pass on these words because they have come to mean a lot to me. If anyone is interested the singer is Natalie Grant. Take Care...
HELD
Two months is too little,
They let him go
They had no sudden healing
To think that providence
would take a child from his mother
while she prays, is appalling
Who told us we'd be rescued
what has changed and
why should we be saved from nightmares
We're asking why this happens to us
who have died to live, it's unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
and you survive
This is what it is to be loved and to know
that the promise was that when everything fell
we'd be held
This hand is bitterness
we want to taste it and
let the hatred numb our sorrows
The wise hand opens slowly
to lillies of the valley and tomorrow
Chorus
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior
Chorus
I still have bad days. A lot. Over a year later sometimes something happens that sends me back, staring into the face of my worst fears. A lot of people say that God will not give us anything that we can't handle, but I think that's only part of it. For me, I know that I could not handle this without God holding my hand. When I pray, I pray that he protect our son. When I am scared, I remind myself that God said that he is our father, and that he has plans to help us and not hurt us. Autism is the hardest thing I have ever had to face. It is also the thing that has forced me to grow and rearrange priorities and really learn what it is to trust and love God. I just wanted to pass on these words because they have come to mean a lot to me. If anyone is interested the singer is Natalie Grant. Take Care...
abbylou
09-17-2005, 12:00 PM
Ill never forget the day the doc said your son has autism the sheer sick feeling ,the grief that someone had died and i suppose it had id lost the son i thought i had ,but time has made me beleive that i have become a better mom one of patience ,extreme endurance ,and one that dosent hear the tantrums but loves unconditionally .finds a solution to his problems ,.Where is the mom that would shout and smack her two year daughter all those years ago ?she isnt there, My son has been a blessing to me in so many ways i love the cuddles love the way i can cope i found true happiness in my kids.
jeffreys mom
09-17-2005, 06:51 PM
I can really relate to this post. I have been having a hard time with my son recently with extreme tantruming. He has always been easy to manage but recently has discovered he has a set of lungs to scream with and his hands to hit me with. It's been really tough because I thought I was going to get off alittle easy since he does so well normally.
I am ashamed to admit, but recently with his behaviors I am embarrassed when we are in public. I feel like people are looking at us like what is wrong with him. I hate feeling the embarrassment as I am usually very proud of him. I ran into an old acquaintence with her children and Jeff was in my carriage acting somewhat odd and I was embarrassed, then very ashamed for feeling this way. I hate myself when I get like this. I am crying as I post this. I have been so together about this for a while now that this is really sending me reeling backwards. I am so mad for feeling sorry for myself and not accepting him for how he is. Another thing I am ashamed about is that sometimes I find myself mad at him for not being typical. I feel so horrible. I am just really having a bad week and I am just ranting right now. But I needed to vent these feelings I am having right now and know that people I know aren't going to think less of me. Thanks for the rant
I am ashamed to admit, but recently with his behaviors I am embarrassed when we are in public. I feel like people are looking at us like what is wrong with him. I hate feeling the embarrassment as I am usually very proud of him. I ran into an old acquaintence with her children and Jeff was in my carriage acting somewhat odd and I was embarrassed, then very ashamed for feeling this way. I hate myself when I get like this. I am crying as I post this. I have been so together about this for a while now that this is really sending me reeling backwards. I am so mad for feeling sorry for myself and not accepting him for how he is. Another thing I am ashamed about is that sometimes I find myself mad at him for not being typical. I feel so horrible. I am just really having a bad week and I am just ranting right now. But I needed to vent these feelings I am having right now and know that people I know aren't going to think less of me. Thanks for the rant
Jana2676
09-21-2005, 03:49 AM
:) I think we all feel that way somedays. Somedays when stangers say mean things to us, I really want to punch them. I want to know why people feel they must make these remarks? I have to tell myself, we live in a small town, be nice.
Well said! :)
Well said! :)