Poll

Question: How educated are you about your childs disease/disorder?

Options:

I totally got it

I'm not perfect, but hey I got most of it

not a lot at all, but need to learn more

I don't know anything at all, and don't care..


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Total Votes: 31

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what special need does your child have, explain a bit about it, or how you understand it, and tell us how you feel about it......

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Comments:

Preci...
Jun. 1, 2008 at 9:18 PM

I have a 3.5 year old girl who has a speech delay and behaviors issues due to the speech delay.  She was diagnosed as PDD-NOS.  She is hilarious, funny, sweet, and stubborn.  She is quite independent and outgoing.

There are moments of hardships, but everything has its ups and down.  I am trying to potty train her; its just a bit difficult because she cant tell me when she needs to go.  She will point or jut out her hip and she does this when she has already gone. 

I have read up about it, still have questions, but with all her therapies, and school, I have met many kindred spirits who are in the same boat.  I sometimes know more about one thing, and another mom fills me in on other things.

Emotionally its draining.  Going to park, and hearing kids complain about her following them too closely, or when they tell her to go away and she keeps wanting to play with them.  It hurts.  Or when i go to the stores, and I hear snickers behind my back of "If that was my child and she behaved like that at the store, ooooh.."  Or "Some parents should not have kids."

People dont think, and dont know about other peoples situations.  And I hate those kind of people.  I have a neighbor who has settled down a bit, but she constantly came over and complained at 1 or 2 in the afternoon that my daughter was screaming or crying too loud.

I feel bad, but what can I do?  Muzzle her, no. I just wish people had more patience. I wish I had more patience.

 

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MOMMY...
Jun. 1, 2008 at 10:09 PM My daughter is 19 mo and has quadraplegic cerebral palsy ,I have educated myself and my family and anyone else who will listen about it and how it affects my child ,Most days I try and be very positive and focus on all the things she can do and encourage her the best I know how but sometimes it hits me and it makes me sad that she cant do alot of things .I think the hardest is watching kids half her age run circles around her I also feel guilty for being sad though because i know there are alot of kids who are far worse than my child so sometimes i feel selfish for feeling guilty there are so many ups and downs when you have a special needs child its a constant emotional roller coaster .

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Mikal...
Jun. 1, 2008 at 10:19 PM

Incredibly exhausted.   At the same time, completely blessed! 
I voted, "I'm not perfect, but hey I got most of it."   Because I don't think anyone is perfect nor can they know it all.   I know all I can know about my son and how his conditions affect him at the time being.    I have much support from friends here on CafeMom.   We educate ourselves together, we learn from each other, we "experience" things together.  I do my best to educate those who will listen.    Those who will take it to heart.   My friends and family know all about my son.   I research all I can about his conditions.   Yet like I said, no one can know everything.   At least that's my opinion.  
Okay, here I am rambling.   Lol. 

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cpmom610
Jun. 1, 2008 at 11:15 PM i feel that i know as much as i can at this monent in time but that the learning is never ending as haley gets older i will need to learn new thing and  i am fine with that   i am over joyed that i have her and wouldent want her to change and yes that sounds funny that i dont want her to chang in any way but i feel that this is a part of who she is it makes her strong,joyfull and more .........   but at the same time it dose not diffine who she is   it is just another thing that makes her haley  

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rmeier6
Jun. 2, 2008 at 1:02 AM Wow,  I  feel so validated here!  As I am reading these comments, I totally feel every sadness and happiness that every one is saying.  There are days that I second guess my self....maybe I am making this all up...maybe my son does not have anything wrong......and then there are the days that I see him next to another 2 year old and I feel like I have to explain to others that my son has CP.  Why do I feel as if I need to make excuses for son.  He is who God created!  He is perfect in every way.  Sometimes I feel horrible when I feel so sad for my son and then there are other children that are far worse than mine.   But what I try to remember is that my son is who he is and I should celebrate every moment there is something new.  It is not always easy....there are times that I just want to be sad for him and that is ok!  I will never lose hope in him...He will do what God has put him on earth!

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Allana
Jun. 2, 2008 at 3:23 PM

Mikala2659 Jun. 1, 2008 at 8:19 PM

Incredibly exhausted.   At the same time, completely blessed! 

Ditto!!  My son has autism, and feel the same way! 

For the poll; I don't feel as if I know everything, but I have a good enough handle to make progress, and am always trying to learn more! 

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Reba06
Jun. 2, 2008 at 4:26 PM

I use to be a teacher for teens with severe disibilities. I taught teens whom had cebral palsy and autisim and down syndrome. This was one of the best jobs I ever have had... I never knew a thing about disibilites and what they entailed before I became a teacher..But I did learn that every child deserves to be loved and taught skills in school... I learned that we all want to be accecepted and have friends who care and are kind to us.. I learned that children with disibilities are and can be just as intelligent as those who have no disibilties at all. We all are in school to learn and grow.. So to a point we all have a disibility in learning and needing to learn and gain knowledge to better ourselves in our lives... I miss my kids i taught in school and i hope i get to see them again one day..

Before I became a teacher. i was a stay at home mother only.. I was a lunch duty teacher and voulunteered at our local middle school where my teens attended school.. I got along with all the kids. Im a pretty easy going person.. The Principal came up to me one day and asked me if I would teach the Children who had disibilities because none of the other teachers wanted them in their classrooms.. She told me she has been watching me around the kids and felt I would be a great teacher for them because I had so much paitence and got along with the other kids at the school...

I thought to myself. "Wow"  This sounds like a challenging job.. but with great rewards.. My heart broke for these teens who had severe disbilities and nobody wanted to teach them... So I told her "Sure" I will do it!  She sent me to one of the colleges for a semester to learn about handicapped disibilities of all sorts and what they entail.. that is all i had to go on to teach these teens.. I taught them Life living skills such as doing their laundry.. colors... how to cook and use utensils...how to have manners and go up to others and shake their hands instead of them grabbing them and hugging on them.. I taught them how to count. basic math skills and computer skills. We kept up on their IEP's and I developed and incooporated programs for each of them individually depending on what disibility they had..some were on a reward system program..some did not have to be.. I. Taught them how to paint with a paint brush. How to respect each others space.. Read to them.. taught them motor skills.  I had them interact in  Music and P.E. with  other kids who had no disibilities. It was nice to see them smile and feel a part of the group.. I will never forget the wonderful time I had while teaching these kids. I stopped teaching them because i moved out of state.. But the time I helped these kids was one of my greatest joys on earth today.. I will never forget them.

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Domst...
Jun. 2, 2008 at 6:28 PM

Blessed beyond belief.  Just recently, and older couple had a baby at our church, and everyone keeps talking about what a blessing is it that the baby was born healthy (which it is, of course) and does not have Down Syndrome.  I mean, saying this over and over again!  It's leaving a bad taste in my mouth.  Every child is a blessing, and in my opinion, having a child with special needs is even MORE of a blessing.  How many of us rejoiced the first time our children finally came home from the hospital?  The first time they were at home completely without machines, or smaller machines?  Etc.  We take nothing for granted.  God CHOSE us out of billions of other parents with the important taks of raising the special children that we have- what an honor!

 

My daughter has a rare cross over form of a connective tissue disorder called Ehlers-Danlos Syndrome Types III & IV, as well as Cerebral Palsy.  She is the firecracker of our family, and because her future is very uncertain, we cherish ever second of her life (as well as my healthy children).  No one is more of an expert on my child than I am.

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nymom99
Jun. 3, 2008 at 5:39 AM

Amazing. My son is going to be 9 this month and has a dx of Lowe Syndrome. He is my Ray of Sunshine and has taught me so much in these 9 years. He has had his hard times in the first few years of life, but always happy, smiling even through it all. Today, I can proudly say he is doing wonderful. Walking, talking understanding all that I say to him and more. This syndrome has many issues that go along with it and anything can change at the drop of a dime, but we take every day as it comes. He does not know that he is "different". I don't believe it  would help to say anything negative to him, so I don't. Keeping a positive attitude has helped him to flurish. He has shown me what unconditional love is and not to take anything for granted. I am so proud of my son and even more proud to be his Mother. 

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kingnick
Jun. 20, 2008 at 10:38 AM After reading everyones comments i feel i am not alone. My son is 8 yrs old now he has quadrapelegic cerebral palsy along with severe mental retardation and seizures. The icing on the cake is this is all due to a birth injury....instead of having a c-section the doctors insisted i deliver naturally and he suffered a intraventricular hemorrage. He has been a blessing to me, but at times i feel very upset and overloaded. My life as it was is no more. We are special parents indeed may God continue to keep us.

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