Topic : Raising a Special Needs Child

My apologies that I came across so strongly.   You are right that we each have the right to our opinions and we've both stated ours now.  Mostly I was set off by the inference on the board that homeschooling is wrong for someone parenting an Aspergers child.  I don't want anyone reading that and writing it off because there are many pro's and we're very happy with our decision.  

My post that you were responding to was dated back in July, some 3 mos. ago.  Back then we were going through a rough time.  The adjustment in nutrition is what helped us back out of that hole.  I had another post later that month that you may not have read. 

I hope your diary will be helpful to many.  Best wishes. 

It hadn't occured to me that your baby isn't able to have all of the TLC that babies usually get.  That's awful.  Little innocent babies you just want to smother with affection and make them feel wanted and secure, but you can't do that with yours.  You said you can't let the big sisters touch her, but can you and your husband?  Are you able to pick her up much?  Does she cry a lot? 

I went to the site you mentioned and read a little.  What an eye opener.  I told my husband about it and he had never heard of it, either.  That's too bad that your MIL didn't have her in a safer spot and she got hurt.  Sounds like she needs some education about what can cause the blisters, too. 

It is unfortunate that we live in a day and age where we have to chose between going into debt or getting the medical treatment you need, just because of health insurance.  I believe health insurance was started to HELP us but somwhere along the line they have become more of a problem. 

I'm glad you felt like you could post here and hope to hear from you some more. 

Blessings, Deb 

We are able to hold her and pick her up often, although there must being clothing in between her and us. As far as crying, which isn't as often now as when she was newborn, if I feel she is in pain, a bit of pain reliever does the trick.   The only reason I really don't allow the other girls to play and hold is is because I am afraid they would accidently hurt her.  Kind of over-protective, yes, but I have to be in order to prevent sores.   

I agree about the insurance problems we have today in society.   Our whole issue was switching insurance from an expensive type to a non expensive trype.  Now, our insurance wasnt to diagnose us first before treatment, regardless of what our medical history states.  

-Deirdre 

Hi! 

My name is Carol.  I am new here.  I was wondering if there was anyone who had a child with a Movement Disorder.  

My son is 8 years old, 100% dependent and in constant motion.  He is not able to control his movement. 

Just want to share, 

Carol 

Hi my name is Velvet and I am the mother of 7 children.My oldest is deaf in one ear but no other problems and I thank the lord for that. My third child is diagnosed as Bipolar  and  he has autisum (high functioning). We have done all the ieps and appointments until I wanted to scream. But all well worth it because I remember who I am doing it for not for myself but my child just like all of  you . Our children are gifts given to us not for punishment but for hope for the future . We as parents have to educate those who don't  know  what these special children can do. We must also remember that what works for one may not work for another. I consider myself very blessed to have all my children because I was not supposed to have any. I have a poem I would like to share with you that someone shared with me the other day I hope you find in it what i did thank you...velvet 

 P.S. We have just stated down a new road for my fourth child who was diagnosed with ADD            
Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this......

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo 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, the 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’ve 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 guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. 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....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they’re 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, ever, ever go away... because the loss of that dream is a very 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 special, the very lovely things ... about Holland.  

I am the mother of five daughters... some step, some adopted, some homemade and some with disabilities.  My oldest daughters with disabilities are in their 30's now, living as independent adults, making their own life choices.  Perhaps not the choices their mother would choose, but it's their life and i have to respect their choices.  

What you all are doing is hard... I've been there and i know how hard it is... I was doing it as a single mom for most of my kids formative years.  Money was always tight.  We used to play, "prove to me your undies are worse than your sister's undies... and we'll see what we can do next payday."  There were times when i thought i had totally lost my sense of humor. 

I'm dead serious about getting kids the services they need, but i think you can do it without losing yourself or your sense of humor.  I am on the Board of Directors of an organization called, Mothers From Hell 2 (A name given to us by school bureaucrats for daring to stick up for our kids... the two is because the org folded then rose from the ashes like a phoinex.).  Our website is full of good solid information for parents AND, it's a place to go to regain your inner clown... start smiling again and send you running to the store to buy a bag of groucho nose glasses and tiaras. 

Google us.  Good luck, be strong and hang in there. 

Cilla 

Many public school systems now offer the option of taking classes online, and the cost of the classes is covered by the school district.  Sometimes students can take some favorite subjects at school for the opportunity to socialize, then take other classes at home toward earning a diploma. 

One national private online highschool is Keystone, found at www.keystonehighschool.com.  They are accredited and we have been impressed with their program.  Our daughter is happy with her classes, and while we do help her when needed, she has regular teachers guiding her through the classwork. 

Good luck!