|
Am I the only mom of a special needs child who feels totally alone in all of this? Noone understands not my friends, not my family and definitely not my spouse. Emotionally I am so drained...I am frightened god forbid if something happened to me what would happen to him. I am his protector his shield from this horrible world of stares and gestures about the unknown and just because he is different. Come on moms I know that u can relate to that no matter how used to it you are it still hurts. I always find my inner self saying to those rude stares what the f*** are u looking, at this is my son and he is perfect the way he is. It kills me that in this world today men are portrayed as the strong sex, u know "its a mans world" I just shake my head and laugh, Men couldn't possibly last one day in any of our shoes. But do we get credit no way its just what we are suppose to do take care of the household, the children, and just between those two alone u seem to never have time to get things completely done. Sorry if I am venting....I am just scared of the road ahead of me, my sons future and how many people I will lose along the way. What if I never want to put my child away or in some institution but what about when it becames physically to hard. How will I ever go on....I have no answers to any of those questions when will to much be to much what if I never have those answers, Is that wrong? My son grew in my womb, and since his birth he has always been my baby he functions at a 6 month old but is 4 1/2 years old and it doesn't matter to me. I drag him up and down the stairs to our 2nd floor apartment every morning and night over my shoulder and I don't care if I have to wear a back brace for the rest of my life.....I am never letting him go. Is that so wrong? ↓
|
|
| Name: lindalu | Date: May 4th, 2007 1:22 AM |
Thats ok, vent away I think at times we have to or we will go insane. I was once afraid of the unknown, the future! I too wondered all the same things you are wondering but you will never truly know until you are there. I cared for my daughter until she was 20 years old, I couldn't do it no more so hubby and I finally hired some one to help us. She now has a wonderful woman that comes twice a day.
Try not to ponder on the future, worrying about what you don't know will not help you now. It will only cause you stress! Keep up the good work all you can do is be the best mom you can, no more! ↑ |
| Name: DAD | Date: May 15th, 2007 5:27 AM |
Hi my name is monica n i have a 15 yr old brother who has cerabal palsy i know how you feel..You ARE NOT ALONE...i know how you feel When you are out the way people look and stare at you both like there is something wrong....But i know that he is my brother and i love him i dnt care what people think or how they choose to react its my life and i am the only one who can live it....I remember to this day when i would sit down and watch my dad take care of him and i grew up wanting to be just like him and i am i help look after my brother but i have sat here in your shoez and watched him grow up to be a wonderfull young man and i can jsut dream about what graet things he could have done and what kind of difference he would have made if he was normal....but he still has dreams as a human being but he is aware that in the modern day he wil not be able to do half the things he would like..I sit down whith him everynight just watching him trying to figure out what he is thinkin and what is going on in his brain i asked him the other night n he said i am just trying to picture myself being normal having freinds going to the mall movies being a normal teenager and it killed me inside just knowing i couldnt give it to him even if i wanted to I allways said if there was a way i could trade places with him for a day just soo he could know what it felt like to be normal i would do anything in the world to help him.But i have seen him grow this far and i am hoping and praying you will see your son grow to be the man he is made out to be..If you ever need anyone to talk to please send me an e-mail and i will be more then happy to talk to you my 3-mail is [email protected] and my name is monice...Take care and god bless you and your family...
~~~monica~~~~this is his 14 yr old daughter ↑ |
| Name: katfeet | Date: May 16th, 2007 8:50 AM |
My son is at a 6 months level and he is 19. He is 4 foot 11 and he weighs 68 pounds. He doesnt walk or talk. I have been his mom and dad for years now. I cannot imagine him living anywhere but with me. I have met a man who loves him and helps me with him but I am his primary caregiver. God willing he will be with me for a long time. I have a friend who is raising a brain injured son and he is a big boy and she still has him at home and he is 19 also. She is a tiny little thing and she still lifts him. I don't know how she does it. We just do the things we have to do. About people staring at your child. I have learned over the years that it never changes there is always going to be those people who stare and the only thing that I have been able to do to stop it is to take Aaron's hand (that's my son) and wave at them and say hello and usually they either say hi or turn and walk away. If I didnt do that I would also say "what the f*** are you looking at too" But I have also learned that it doesnt work. Most people stare because they dont understand and it is intriging to them. Most people can come up and talk to me and I will tell them what is different about Aaron. It has taken me many years to learn how people are and now I usually don't even notice people looking at him. I would love to hear from you and will help in anyway that I can. I hope that some of this has helped.
Kathy ↑ |
| Name: JOJOWILL2 | Date: May 20th, 2007 2:08 AM |
| I TOO FEEL LIKE YOU DO IM SCARED OF THE FUTURE. I HAD A MOM OF A TYPICAL CHILD ASK ME IF I WAS EVER GOING TO PUT MY CHILD IN AHOME I ASK HER IF SHE WOULD PUT HER CHILD IN A HOME, THAT SHUT HER UP.PEOPLE SEEM TO THINK WE DONT LOVE OUR CHILDREN AS MUCH AS THEY LOVE THERES. AS FAR AS PEOPLE STARING IT STILL MAKES ME UPSET I ALSO WANT TO SAY AND SOMETIMES I DO UNDER MY BREATH WHAT THE f*** ARE YOU STARING AT!!I HAVE ALSO LOST FRIENDS ADN FAMILY AS SAD AS IT IS THEY JUST DONT UNDERSTAND AND MAYBY I JUST A LITTLE ANGRY AT THEM FOR THER IGNORANCE... I DO ALONE ALSO. IF IT WERNT FOR MY MOTHER I WOULD LOSE IT. YOUR LETTER MADE ME CRY BECAUSE I KNOW EXACTLY HOE YOU FEEL AND I KNOW IT HURTS AND IM SO VERY SORRY THAT YOUR HURTING.. TAKE CARE ↑ |
| Name: midgie | Date: May 27th, 2007 7:02 AM |
| My son has multiple diagnoses. His primary diagnosis is CP. He will be 14 years old in two months. He is legally blind, eats with a G-tube, and is a spastic quadriplegic (he does have a couple of other diagnoses, but those will do for now). Yet, I tell everyone that he is happy. I have developed a saying I tell people, “Men just think women are in this world to serve them, my son knows they are”. It took me along time to cope with my son’s disabilities, but I came to realize that if I was to be of any real benefit for my son, I had to come to grips with what I had to work with and find ways to work with his disabilities. Grieving for what could have been for my son didn’t make things better for him. My coming to realize that he was a human being with limited abilities did. I began to work with my son on his level. My son had sensitivity problems his first few years, but after awhile he responded well to touching, hugging, and knowing that I, or someone was near him to care for him. It takes awhile for the parent to adjust, but with patience and love, you will begin to see that your child is still a child that will respond in ways you will recognize. My son can’t communicate at all. He can’t speak, he is legally blind, and he does not have enough control over his body movements to learn sign language. He is also developmentally delayed. There is no doubt in my mind that he knows who I am (he turns in my direction). Sometimes noises confuse him and I need to rub my face against his and give him his special ear kiss before he realizes it’s me. ↑ |
| Name: sweetcaramalkiss | Date: May 28th, 2007 9:42 PM |
| I just want to thank all of you for your wonderful responses they all really touched me in a way that made me realize I am not alone. I know that no matter what I will always have all of you out there that live my reality every day by my side. And with that said I know I am never alone... My email address is [email protected] if anyone ever wants to email me I would love to chat sometime.....take care ↑ |
|
|
