special needs

[khrisday]

Wether you are parenting, partnering, or caregiving for someone with special needs- let's find each other!

[khrisday]

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.

[willibug]

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.

[khrisday]

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.

[heartmama]

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!

Heartmama

[Els' 3 Ones]

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.

[bigcats]

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

[Becky N.]

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.


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

[Plaid]

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.

[heartmama]

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

[khrisday]

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.

[khrisday]

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

[glh]

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.

[gossamer]

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.

[khrisday]

Wow gossamer- what an amazing man, and a source of inspiration!

[gossamer]

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?

[heartmama]

((((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...



Heartmama

[heartmama]

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.

Heartmama

[khrisday]

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.

[Els' 3 Ones]

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.