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> Trapped in the body of an autistic child
DuckyOne
post Mar 19, 2003, 02:29 AM
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I have a beautiful 9-year-old son with multiple disabilities, not the least of which is autism.  He is a bright, vibrant, loving child with serious communication and behavior problems.  I feel so helpless as a parent to see him struggle in a world that has no interest in his wellbeing and a government unwilling to enforce his right to an adequate education.  We live in the middle of a cornfield in the midwest, and there are no services here geared towards a child of my son's unique combination of disabilities.  He is also deaf.  He has difficulty with sign due to the complexities of autism, and he cannot handle social situations well at all.  I am shunned by the masses as a parent who cannot control her child.  In reality, I am a parent who is heartbroken because there is no opportunity for the glorious blessing that is my son to be seen and understood by the world.  Anyone else's input would be welcome.

Danielle
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lover_with_wingz
post Mar 19, 2003, 06:20 AM
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First of all Danielle! I would like to welcome you to my formum and to this wonderful site! Here you will find so much that i am sure you will enjoy and the abundance of friendships is remarkable I hope you let me take this opportunity to be your friend and to offer you hope inspiration and support! You are a very courageous women and from what I have read a wonderful parent to your wonderful son! It is sad that others may not be able to pick up on his uniqueness! You are right the It is sad that people such as your son are cast aside or shunned! Growing up with a disability of my own I can greatly empathize with this! This world is very jusgemental and more times than not the people with disabilitites get left in the cold! that was why I started this forum in order to make a difference and offer hope and support! I thank you so much for sharing your story by doing so you have made the biggest diffrence ever! It is not always easy to share your personal stories but I am glad you were one person who could! I learned alitte about Autism in my classes for college as a Social Worker and majoring in Socialogy! I also have a degree in Human Services Maybe someday I can lend a helping hand towards your son and make his life alittle bit easier! I look forrward to hearing from you again

I enjoyed your quote at the end of your message

"Yyu laugh at me because I am diffrent I Laugh at you because you are all the same"~ well said

Love always,
Chrissy

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Dara
post Mar 19, 2003, 12:06 PM
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Hi Danielle!
We have talked before on the other site, and as you know I work with children like your son, who have autism and other developmental disabilities. I would like to tell you that my heart goes out to you, it really does! I have family memebres who are disabled as well, a neice with autism, a nephew with PDD, and another nephew with emotional problems. It is heartbreaking to watch a child, especially your own, grow up misunderstood and unable to communicate. I have a 4 year old boy that I work with now who is bright and beautiful, but cannot communicate. Also, he has many behavioral problems. His mother works along with me and the other therapists to help her son, yet as you know, the progress is SLOW....Some of these children can learn to communicate via PECS, or other communication devices such as Dynomite, or Dynavox...Unfortunately, it is not always recieved well by parents, or the public, as most parents want their children to"talk". The way I see it, if the child can tell you things using symbols, puictures, signs, electronic devices, etc...it is a wonderful thing. Each child is a unique individual, some children can function as the majority of childern do, within the norm. Other children have their own sets of norms they live by, and we just have to figure out how to tap into their minds, and learn what they are trying to tell us through their behaviors. I think children with autism are very intelligent. they have many skills and talents, they have likes, dislikes, favorite foods and favorite toys just like any other child does. I wish society was more receptive to children and adults with autism and other disabilities, as they have SO much to teach US! YES, they can teach us about life as well. Ifind no beter gratification than working with my students, and breaking a milestone! Like teaching my student to shake his head yes and no when appropriate, also, he can now sign "help me". These simple signals that we take for granted opened up a new world for this boy and his family. Decreased his frustration and makes him more aware that he can use COMMUNICATION, instead of behavioral outbursts, to get what he wants...and that is JUST THE BEGINNING...

Sorry Danielle, I kind of went off the topic of your son. Please feel FREE to pick my brain. I would love to help you figure out some things that could help your boy. Did he ever get into the school you were looking into a while back?

Take care!
Love, Dara wink.gif
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Shawn
post Mar 22, 2003, 04:45 AM
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hello Danielle,

please let me take the opportunity to welcome you here to our message board.  I just wanted to respond to your post above on your autistic son.  Straight to the point, I thought that, in case you haven't done this already, you might find http://pubmed.com searches (using search term 'autism' for example) helpful and very informative.   I'm in the neuroscience field myself, though my work doesn't involve autism, and admittedly, I don't know that much about autism off the top of my head, besides what I could find thru pubmed, that is.

Anyway, good luck to you and your son.

take care,
Shawn
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Dara
post Mar 22, 2003, 01:01 PM
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Shawn, and  everyone else:

We try to use "person first", or "Child first" terminology when talking about disabilities. I will give you an example: "Autistic child" as opposed to "Child with autism"
Basically, saying the person first, it taked the emphasis away form the disability, and reminds us that we are talking about a person, not just a disability. I learned this in my education classes in college, and working as a special education teacher, it is very important for us to remember the child first!

Just figured I would share that with you!

Love, Dara wink.gif
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lover_with_wingz
post Mar 23, 2003, 02:50 AM
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Thanks Dara! That is great advice all people should use disabilities or not! It important to remeber that about all other aspects the child or adult is a person first! So many of us with diabilities get looked down upon and we can feel ashamed for what we have but we must remember it is part of us not the entirety of us! Great point and well said! Thanks Dara for Sharing this!


Love always,
Chrissy
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DuckyOne
post Mar 25, 2003, 11:17 AM
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You guys are so sweet!  I really appreciate the info, and thanks, Shawn, for the great site.  (Both this one and the one you posted aobut, lol)  Anyway, just an update on the school situation.  I think I made a major administrative breakthrough in getting approval for his placement in the aforementioned residential setting.  I think we have attained approval from the person at the Dept of Human Services who even admits she is the toughest hurdle to get over when it comes to placing a child.  We have an opening suitable for Ty, and the school is only an hour from here!  They are even taking part in a pilot program for autism instruction.  I think things are shaping up, but I can't help feeling like a total parenting failure.  He just turned 9 a month ago today, and I'm trying to send him away to this boarding school because I can't handle him anymore...  I don't know.  I know he'll get more of an opportunity to live a good life and be a part of the community there.  They have a fantastic outplacement program so that when he ages out of this program, we won't have to go through all of this again.  Am I doing the right thing?  It felt right until things began to click.  Now it appears that this thing I've worked for a year and a half to accomplish is finally coming to fruition, and I am questioning myself again.  I am so worried that making a bad decision now will scar him for life...  I love him so much.  My whole life has revolved around this child, this pure, sweet, honest being who depends on me for everything for the past nine years...  is this what I can look forward to when the other kids go to college?  (Just kidding.)  I'm sorry to ramble, it's just that everything has revolved around Ty for so long that I''m not sure I can function without him.  Does this make any sense?

Thanks for listening.

Danielle
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Dara
post Mar 25, 2003, 02:03 PM
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Danielle,

I am so sorry you are struggeling with your decision about your son and the residential program. I worked in several group homes, and I must tell you that I made myself a promise that I would NEVER let any of my loved ones end up in a group home. NOW, that is only MY experience, and Iam certain there are wonderful programs in other places, but here they are terrible. Tese are things I would look for: How long have teh staf been working in the group home...most of these places have a terribly high turnover rate, which can be bad for the people living in the homes. WHY, you may ask? Well, the children or adults will have goals they are woring on, behavior plans, routines, etc..that new staff will need to learn. This is all well and good as long as he staff dont come and go on a monthly basis! Not to mention the instances of abuse I have witnessed inthe group homes, and when I reported them, how LONG it took to get results. These children and adults depend on us for their lives, and it is my belief that highly trained ann educated staff should eb working in group homes. There should eb a higher salary to draw in a higher standard of staff. It really breaks my heart to se how the people were treated where I used to work. Sure, there were a handful of us who LOVED them as if they were our own family...but we were the minority.

Again, I am hope this is not the case in all group homes across america, but from the many different homes I have worked in, this seems to be the norm...

Please research and know that your son is going into one of the BEST! I say if you visited it and yur HEART feels like it is the right thing to do, then you are making the right decision for your son! If you have any doubts about the home itself, maybe you should do further research!

I hope I didnt make things worse, but I tell you I have witnessed some unpleasent things,and i would feel bad if I kept that to myslef!

Good luck and keep us posted, PLEASE!

Love, Dara wink.gif
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Lori_F.
post Mar 26, 2003, 11:33 PM
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Danielle,

A couple of generations ago, Tyler's autism would have been attributed to his cold, unloving, "icebox" mother.

Fortunately, that riduculous theory was abandoned decades ago.  While it's true that modern science has yet to uncover the cause of autism or find a cure, knowledge has progressed enough to dismiss such unfounded, accusatory speculation.  Autism isn't caused by unloving parents and, tragically, all the love, comfort, and safety in the world can't prevent or cure autism.

You haven't failed Tyler in any way.  You're the reason why he functions so well and achieves so much.  Since the day he was born, you've given him the loving, supportive environment that enables him to thrive.  Please never feel as if you're a failure.

You're in my thoughts,
Lori
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Dara
post Mar 26, 2003, 11:41 PM
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Yes Lori!
Autism in infact a neurological disorder which effects each person differently. There are people with autism who are holding down jobs, in fact, there is a college professor, Temple Grandon, who has autism. There are also people with autism who cannot live indapendently, and require individual care for their entire lives.
It has nothing to do with the lack of compasion of a parent, though parental involvement is VERY important to the future success of the child. Danielle, it sounds like you are very involved in your sons care, and it takes parents like you to make the life of the child with autism the most functional.

Love, Dara wink.gif
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ilovezach
post Apr 30, 2003, 06:04 AM
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Danielle,
I am 15 yrs old well i will be in 7 days I volunteer at a center for mentally and physically disabled people ranging from ages 3-21 i love it well many of them have autism which  enables them to not be able to communicate very well i have enjoyed reading about ur son um... if u dont mind me asking where do u live in the midwest? if u can let me know i have a place u can call it is a place where i volunteer i dunno bout u but plz do not use the word retarded around me or ill flip out not that u have just for future reference if it means ne thing i mean yeah im only 14 but just yesterday i recieved a volunteer of the year award so yes um the place i volunteer at is the Goldie Floberg Center they may be taking new clients i personally know alot of sign language and well they like tell me to knock it off sometimes(the workers) b/c they say i baby them but i dont thinking showing them love is babying them they can do a one on one like it would be ur son and 1 worker they take the clients on off grouds at least 1nce a month so danielle just let me know we'll be praying for u

    Micah
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DuckyOne
post May 01, 2003, 04:12 AM
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Micah,

You're not going to believe this, but we are in Clinton, IL, and Tyler went to Goldie B. Floberg for the 1-week trial visit earlier this year!  Oh, my gosh... oh my gosh...  I'm so EXCITED to meet someone in this area... kind of... we're way downstate, by Springfield.  We couldn't get DHS to fund him to go to Floberg, (my first choice, by the way) so he will be going to The Hope School in Springfield.  Anyway, since you volunteer at Floberg, maybe you met Tyler while he was there?  Oh, how cool!  Oh, I'm so glad to meet you!  Happy birthday in advance, by the way!

Thanks so much for your reply!

Danielle
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ilovezach
post May 01, 2003, 10:21 AM
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im sure i did meet him y wouldnt they fund him? they dont fund alot of clients i thought he was goin to floberg lol my bad yeah i probably did meet him around when did he visit? i know all the clients and i love them to death and vise versa did u meet ne of the clients? well wow that is cool ttyl
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lover_with_wingz
post May 01, 2003, 01:50 PM
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Micah I am so proud that you are voluntering your time for such a wondeful cause...I am also glad to seeing you reaching out to Danielle in her time of need! It is so wonderful to a nice person of your age out there helping to make this world a better place you should be proud of yourself! I know I am irti s a joy to see when someone volunteers and gives so much heart spirit and soul as you seem to be doing! I is nice you live close ot Danielle! I am sure you both can be a big support for each other! ia so glad you have come to the site! Your presence makes it a better place.

Danielle You  are a wonderful mother please remember that!

Dara and Lori great posts here on Autism like any disorder as you have said each person is affected differently! I am so proud of how this thread is developing and the interaction going on here ;D

Good Luck Keep us posted


Love always,
Chrissy
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ilovezach
post May 01, 2003, 02:00 PM
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thx i think danielle is mad at me though she wont tlk to me
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