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#1 of 81 Old 06-18-2002, 01:07 PM - Thread Starter
 
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Wether you are parenting, partnering, or caregiving for someone with special needs- let's find each other!
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#2 of 81 Old 06-18-2002, 01:13 PM - Thread Starter
 
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I am a SAHM and homeschooller to two children with special needs. DS has Asperger's Syndrome (high functioning Autism) and traits of ADHD, Obsessive Compulsive Disorder, depression and tics. DD was born with severe meconium aspiration which required a heart/lung bypass machine for the first week. She suffers from Post Traumatic Stress Syndrome and Asthma from this.
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#3 of 81 Old 06-18-2002, 01:19 PM
 
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We have recently discovered that my 6yo ds has Tourette's Syndrome. I also have a 3yo dd and 16mo ds. We are strongly considering becoming a homeschooling family as of next fall.

Khris, I started a thread about Tourette's, and you posted a reply. It took me a long time, but i finally got back to it. It's in the Parenting Issues forum.
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#4 of 81 Old 06-18-2002, 01:39 PM - Thread Starter
 
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I just saw it this morning willibug- I would strongly encourage you to homeschool. It has been so wonderful for us. I look forward to getting to know you better.
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#5 of 81 Old 06-18-2002, 05:24 PM
 
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Ds is 6, and has had 3 open heart surgeries. Ages 2 weeks, 12 months, and the 3rd one at 4 years.

He was born with multiple heart defects, some of which have been corrected. He is very bright and outgoing. If he does not have Post Traumatic Stress from what he has gone through, I sometimes think I do!

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Mother is the word for God on the hearts and lips of all little children--William Makepeace Thackeray
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#6 of 81 Old 06-18-2002, 07:30 PM
 
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My 3rd child, Duncan, is a boy with Down Syndrome.

He is 3yo and learning sign language. Very speech delayed but strong, outgoing, happy and a funny guy.......................he jokes with us alot!!!!!


khris - thank you for your efforts here. I'm sure we can find a way to come together here and connect with the rest of the commune as well.

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#7 of 81 Old 06-18-2002, 10:23 PM
 
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I work at a therapeutic preschool for kids with emotional disorders and behavior problems.

I'd always love to get ideas about ways to work with the kids that are possible given my position in their lives (i.e. I can't do a whole lot about their living situations and interactions with people outside of the school).


This thread is a good idea
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#8 of 81 Old 06-19-2002, 02:56 AM
 
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What a great thread! It's sure lonely when the love of your life is different from everyone else's kids!

My Jacob is 2 and has developmental delays- mild in motor skills and moderate in expressive language. Of course, no Dr. or therapist can tell me why, but my gut tells me it's dyspraxia. He also has absence (petit mal) seizures every day, but they're so mild you have to watch for them to catch them. Oh, and multiple food allergies/intolerances.

Besides that, he's sharp as a tack, has a better memory than I do, cracks me up daily, loves to give kisses, and has more energy than I have ever had.

I once read an article by (I think!) Erma bombeck (forgive me if I am plagarizing) about how God chooses parents for kids with special needs......
It went something like this-

************************************************** **

God was talking with his head angel, discussing which parents to match up with new babies that he was sending down to his Earth to be born. He said " Angel, this is a very quiet, content baby. Send him to those parents who have little experience. "

"Yes, Lord," replied the angel. "You know best."

Next, God looked upon a couple whose pregnancy was unexpected and who had doubts about parenthood. God said "Angel, send them this happy, joyous baby, so they can appreciate the gift of new life completely."

The angel nodded and complied, saying "You know best, Lord."

This carried on throughout the afternoon. Finally, they came to their last set of parents. The angel said "Lord, these parents have wanted a child desperately for many years. They hold more love in their hearts than any of the parents we have seen today. They are ready to devote their entire souls to the well-being of their child. Surely you have an equally wonderful baby to send to this deserving couple, Lord."

"Yes, angel, I do," replied the Lord. Send them this handicapped child."

"But Lord, I do not understand," replied the angel. "Why would you make such a decision?"

God replied, "Angel, you have said yourself that I know best, and I do. Only these parents have the patience, the faith, the intelligence, the bravery, the strenth, and the unconditional, unending love that this very special child will require. This special child deserves only the most special parents."

The angel was rightly humbly, and could only nod in agreement.
For he knew, just as we do, that God doesn't make mistakes.


************************************************** **
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#9 of 81 Old 06-19-2002, 12:46 PM
 
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I'm married to a wonderful 36 yr old man who has Aspergers Syndrome. Wasn't diagnosed until in his 20's. Was labeled "learning disabled" in school, but is one of the smartest people I know. Homeschooling would have been a much better experience for him than public school was. I think Aspergers kids just have such a different way of looking at things and their needs would be so hard to meet in the standard classroom. However, he did go on to college & has a degree in history.

I am slowly learning about Aspergers. I knew nothing before I met him just three years ago.

We are waiting for our first baby to make an appearance any day now, and I know he will be such a great dad! I am truly blessed to have him in my life.
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#10 of 81 Old 06-19-2002, 02:02 PM
 
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I am not at all wanting to come across as a big downer, but I have to add my feelings about that poem (which I have seen many times before). BTW I am not AT ALL offended that you shared it. Everyone should feel free to share what inspires them as parents.

I do not think kids with special needs get special parents. Some kids with special needs have parents who could care less about them. Some are abandoned/put into foster care/neglected because of the parents feelings about the baby's condition. I have seen babies in ICU who never have visitors. It is sad beyond description.

For years I grappled with feelings that this might have happened to us for " a reason"; maybe Karma, a divine plan, whatever. I have finally found a measure of peace in believing that nothing bad ever happens to children for a reason. There is no reason that justifies a baby suffering. I have come to believe it is a senseless tragedy, without inheret meaning, and nothing I could have done would have prevented it. For me, believing that no one is in control of suffering, and God/universe could not have even stopped this--that brings me peace. I would probably be an atheist if I thought God let this happen without stopping it. All I can control is how I respond to something like this when it happens. I find meaning in my response, in the way our life has changed. I find meaning in what comes after.

I realize this is *not* how many parents come to find peace in coping with special needs babies, and we should all cling to whatever it is that helps us cope. But I have only found peace in *not* feeling special; *not* looking for a reason. I accept what happened, and am glad to have ds no matter what we have to go through. I won't ever validate that it is okay, however, that he suffers, because for me it is not. For me, there is no reason that justifies the suffering of children. It is the price we pay for living in a dichotomized universe. That is what I believe...

Heartmama

Mother is the word for God on the hearts and lips of all little children--William Makepeace Thackeray
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#11 of 81 Old 06-19-2002, 03:04 PM - Thread Starter
 
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Heartmama, I am so glad you shared that- I feel the same way, but was hesitant to share. You always hear people saying "Oh God won't give you more than you can handle" Well I say if that were so there would be no such thing as suicide or mental breakdowns. I know it's probably not a popular view, but it's the way that I feel.
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#12 of 81 Old 06-19-2002, 03:05 PM - Thread Starter
 
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This is my favorite piece about having a child with special needs:

WELCOME TO HOLLAND
When you're going to have a baby, it's like planning a fabulous trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michaelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, your plane lands. The stewardess comes in and says,"Welcome to Holland."
"Holland!!!" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence famine and disease. It's just a different place.
So, you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would have never met.
It's slower paced than Italy, less flashy than Italy. But after you've been there for a while, and you catch your breath; you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But most people you know are busy coming and going from Italy, and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say,"Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very lovely things about Holland.
-Author Unknown
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#13 of 81 Old 06-19-2002, 03:16 PM
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Heartmama-I had that poem read at my son's funeral. It brought me some comfort at the time, but I eventually came to believe exactly as you do-that no God I want to believe in would make a child suffer on purpose or not stop it if that was possible. There are too many abused, neglected children in this world to believe that "everything happens for a reason". Khrisday-I love the Holland essay, I heard it years ago after my son was already gone, but it is so very very true.
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#14 of 81 Old 06-19-2002, 03:26 PM
 
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My husband was diagnosed with Juvenile Diabetes at the age of 3. During his first semester of college he started to lose his eyesight and within 9 months went completely blind. He has no vision what so ever. He has since graduated Summa Cum Laude with a degree in psychology and also graduated from Law school. He passed the Bar the first time he took it. I feel so blessed to be loved by such a wonderful man. I met him about 15yrs after he lost his eyesight. He is so kind and compassionate. I tell him when I met him I went down my list of characteristics I want in a husband. After checking them all off, I realized no where on my list had I put "must not be blind". It's been a great ride these past five years. I can't wait to see him parent. He will be so awesome.

Before you were conceived, I wanted you. Before you were born I loved you. Before you were a minute old, I would have died for you. That is the miracle of life. ~Maureen Hawkins~
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#15 of 81 Old 06-19-2002, 04:19 PM - Thread Starter
 
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Wow gossamer- what an amazing man, and a source of inspiration!
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#16 of 81 Old 06-19-2002, 04:31 PM
 
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Thank you. I always look to him when I find myself in difficult times. He IS inspiring. I always ask myself, am I doing everything I can with all of my god-given abilities?

Before you were conceived, I wanted you. Before you were born I loved you. Before you were a minute old, I would have died for you. That is the miracle of life. ~Maureen Hawkins~
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#17 of 81 Old 06-19-2002, 11:27 PM
 
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((((glh))))....I don't know what to say. I am so sorry. I hesitated to criticize that poem for this very reason. I know it is a precious thing when something comforts us, and is certainly above any reproach. I know you said you eventually agreed with my sentiment, but still, I am sorry that I said anything which might have brought you sadness.

I must have missed your post about your son. Would you might saying a bit about him, if you want to?

I am very sorry for your loss. I can't imagine what you have gone through. Words just aren't enough...



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Mother is the word for God on the hearts and lips of all little children--William Makepeace Thackeray
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#18 of 81 Old 06-19-2002, 11:33 PM
 
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khrisday...you are right. Have you read the book "When Bad Things Happen To Good People" by Rabbi Harold Kushner?

He essentially says the exact same thing about the "You will never get more than you can handle" comments. I was very impressed with that book.

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Mother is the word for God on the hearts and lips of all little children--William Makepeace Thackeray
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#19 of 81 Old 06-20-2002, 12:47 AM - Thread Starter
 
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Heartmama I haven't read that one yet, but I have heard from others that it is a good book. It's on my (10 foot long and getting longer by the minute) list of books to read.
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#20 of 81 Old 06-20-2002, 01:07 AM
 
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The Holland piece was written by Emily Kingsley who has a son with down syndrome.

I read that soon after Duncan's dx and it brought me so much peace. It helped to identify the emotional roller coaster we were feeling.
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#21 of 81 Old 06-20-2002, 09:07 AM - Thread Starter
 
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What other books have you all read that have been helpful? I liked Dr. Greenspan's book- You Special Needs Child I think it's called.
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#22 of 81 Old 06-20-2002, 10:50 PM
 
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Just poking my head in here. I have a thirteen year old daughter (turning 14 this summer) with Aspergers and a two year old (happy birthday last week!) son with autism. Also a typical (well, sort of ) eight year old daughter. We don't homeschool anymore because it's not right for me at this point in my life - who knows what the future holds, though? I'm happy to see this thread.

Stephanie
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#23 of 81 Old 06-21-2002, 11:49 AM
 
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Welcome to all the new faces!

Wow, swolf, I am speechless that you have 2 children with autism spectrum diagnosis'. Do your doctors feel that there is a genetic factor at play? I hope you don't mind my asking. I have a friend and both her children are diabetic (one diagnosed at only 10months old). They are in a research program through a university that studies siblings with identical diagnosis'.

How have others coped with the "second child" issue (assuming the first child is the one with special needs). Are you scared to try again? How do you work through that process?

Heartmama

Mother is the word for God on the hearts and lips of all little children--William Makepeace Thackeray
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#24 of 81 Old 06-21-2002, 01:30 PM - Thread Starter
 
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We weren't going to have a second one- she was a surprise!
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#25 of 81 Old 06-22-2002, 01:17 AM
 
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hi! i teach high-schoolers with special needs (add/adhd, dyslexia, developmental disorders, asperger's, some autism, some general social functioning stuff) at a really small private school which is a wonderful place. it's nice to see a thread like this, bc it seems that the parents of the kids i teach often feel really isolated bc they have to look at the world so differently from other parents. we have that holland poem posted in the school, and it makes a lot of sense. the kids, by and large, do fine once they're in an environment that meets their needs. we have a really cool school. i'm hoping to get more perspectives on kids like the ones i teach. i have two of my own, both boys, but neither one has special educational or developmental needs.
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#26 of 81 Old 06-22-2002, 02:13 AM
 
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My partner and I are raising a son, almost 3, Riley, who was born with many complications (another post-Incompetent Midwife if you want the story). Anyhow, he was diagosed with meconium aspiration, cerebral hemhorrage, seizures, and vocal cord paralysis (the kid gets around for not being 24 hours old yet!). Later, he was found to be significantly speech delayed (9mo level at 18 months of age). Therapy seemed to have jump started that skill. We have watched him closely and carefully and he is a wonderful child who has outgrown his diagnoses. He was formally released from the neonatology development program at our local hospital and is developmentally on target. We are very blessed with our son.

We are now hoping to adopt a special needs child in the near future. Spouse is a therapeutic recreation specialist and I am a retired social worker/paramedic. THANK YOU for starting this board! The best support I ever received was from other parents who were in a similar situation. I'm here to support any parent who needs a shoulder!!

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#27 of 81 Old 06-24-2002, 01:49 PM - Thread Starter
 
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It's nice to see some people who work in the field here as well- welcome to all!
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#28 of 81 Old 07-01-2002, 10:08 PM - Thread Starter
 
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Depression is much more common among parents and caregivers of people with special needs than the general public, and it is obvious why. Sometimes life really does seem a drugery and I allow things to get me down. We have been dealing with a lot of behavior issues and aggression lately and it has just worn me out.

I almost lost it at the park today- I was trying to make a call on my cell phone and only half watchin my son. He was up in a tree and two neighborhood boys were under the tree. I figured they were playing, that was good. The boys approach me and tell me my son has thrown a toy and hit one of them in the head. They looked at me expectantly as if I would have some magic band aid. Here I am thinking- first of all, it's already happened- I can't go back and change it, secondly I can't even keep this kid from attacking ME lately, how am I going to stop him from hurting anyone else. I asked the kid what he expected me to do, they judt said "well you're his mom"- as if birthright gives you magical powers. Which brings up another issue entirely- he is the ONLY 6 year old who needs his mom watching him at the park. Nobody else has to be there with their 6 year old, in fact nobody else even goes with their 4 year olds, I'm the only parent at the park most of the time. I told the kids to ask him why he threw it and he had a perfectly good reason (at least in his mind). I just get so frustrated and burnt out sometimes, I know that times are really tough right now and that they will get better, but that doesn't necessarily help.

Oh, this tuned into a whine, sorry. How do other people deal with behavior problems and social issues?
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#29 of 81 Old 07-17-2002, 04:38 AM
 
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I don't think you are whining!! You have a rough situation, no two ways about it. And the amount of time and energy it takes to continually "educate" others (kids, parents, friends, etc) takes its toll. Here is a good place to vent or whine. We understand! When our son was born and was so medically fragile, I actually had someone tell me that I was going to spoil him if I kept "anticipating his needs and didn't let him express then". I could understand this line of thinking had our son been 2 or 3 at the time, but he was a newborn and whenever he got crying, he turned blue!!! So, absolutely, no crying in this camp. You go girl!! I'm on your side!~
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#30 of 81 Old 07-22-2002, 07:03 PM
 
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khrisday: you mentioned Dr. Stanley Greenspan's book several posts back. I used to work in an early intervention program and had the awesome privilege of attending a workshop/training of his in Arlington, VA in '96. He is one incredible, amazing guy and I learned so much during those three days. I own the book The Child With Special Needs . I highly recommend it to any parent - but especially to anyone whose child has been diagnosed with PDD, autism, etc.
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