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Mom's with Disabled/Handicapped children?

Posted by on Jan. 25, 2009 at 8:41 PM
  • 6 Replies

How do you do it? How do you get through it? What keeps you going??

Tonight was just one of those nights. My oldest DD, almost 4 was sitting at the table with us. She has an oral aversion and will not eat but lately she's been acting more interested in food. She plays with it (her OT taught her this and now we can't break the habit). Well tonight she put Yogurt Melts (she's only allowed meltable foods right now) in her mouth, 4 of them and then started spitting them out. It was so frustrating because it seems like one day she can do so much - the next... nothing.

She has several disabilities, mental and physical. I am just so overwhelmed right now. I want so much for her and I wonder sometimes when I'm looking at her whether she'll ever do any of it. Will she ever walk? Will she ever talk correctly? Will she ever be able to go to school? Act like a normal child? BE a normal child? Will her medical handicaps always get her down? I just have days where I feel so forlorn. Like nothing good is ever going to happen... Urgh... I need to bolt myself out of this funk!

I am so very thankful she is alive and healthy enough to be here with us but I just get so down sometimes when I sit here and see her, and then her sisters who are healthy. My (almost) 2 yr. old is walking, running, climbing and being two... I wonder whether it would be easier to handle if I didn't have other children or if having them makes it better. I'm not sure. I'm just having one of those days and would love to know that I'm not the only one who get's like this! So... despite this being a vent... anyone have similar experiences with their disabled/handicapped children?

 


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by on Jan. 25, 2009 at 8:41 PM
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Replies (1-6):
LoveMyBugs
by on Jan. 25, 2009 at 9:02 PM

bump

 


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treysmama06
by Silver Member on Jan. 25, 2009 at 9:10 PM

Im sorry, my moms friend paula has a 8 yr old lil boy who is disable.... and i KNOW its nothing at alll easy ...

sorry i have no advise but u are a strong woman cause i really dont believe i could do it ... good luck

Miranda926
by on Jan. 25, 2009 at 11:07 PM

Its extremely difficult to deal with it.  I just tried to take things one step at a time and try my hardest not to let it get me.  My daughters problems were mainly physical, but the NICU specialists were sure she would have mental delays.  I worked so hard and so long and now my dd is 6, started kindergarten this year and she is so smart she blows me away!!!  Just keep your head up, and keep at it...I know my dd still amazes me with her progress and I am sure yours will too!!  Good Luck and God Bless!

zeester2001
by on Jan. 26, 2009 at 10:10 AM

Hi there,


That's what I wonder with my little boy. He was just diagnosed with a terrible genetic condition that will eventually make him lose all of his abilities. It has started with his walking. So, I always and wondering if he will ever be normal and I know deep down he will not and he will not live probably past the age of 5. So, there are others that are going through the same thing and the only thing I can say to you is love your child and take one day at a time. I wish you all the best!

pamperedmolly
by on Jan. 26, 2009 at 12:08 PM
Hi, First off let me tell me you that i am proud of you to admit your frustrations. I am the proud mom of a 31 yr old man with Autism who still lives here at home, not easy and sometimes very stressful. Dr's told years ago he would never speak, toilet or behave like (normal kids). My question to this day is what or who is normal? Am i the one who is disabled or is he? He can speak when he needs to, or makes wants and needs known, he is toileted, walks, runs and even swims. He went thru years of food issues but has gotten much better with patience and time. He now is in Day-hab services, has two part time jobs, is on a bowling league, swims at the YMCA two days a week, (with aides with him). Your daughter thru early intervention, therapies, patience and love will develop to all she is meant to be. I also have a son 29 years old that grew up helping tremendously with his brother and i raised them as a single mom for 11yrs. Hard is an understatement but acheiveble. Please find a support group for parents with disabled children to use as your venting ground and education for yourself and daughter. Also develop faith that your children are your number one reason to live today and give them all you can do get them to where they can be the best they are to be in adult life. Then be sure for at least 2-4hrs a week you get time away for yourself,, (shopping, friends, movie, dinner out, exercizing, library, scrapbooking the little ones lives, or whatever relaxes you). This is very important. I laid many road maps for the children with Autism in our area thru my persistence in schools and programs for my son, , and you can learn to do the same and know that the word no almost always can turn to a maybe or yes. Please stay in touch and i wish you success and great strives. No the road with my son has not been easy and full of stressful days but well worth the challenge that God gave me. I marvel at him everyday as he was not suppose to see age 2. God Bless you honey with your endeavors.
MomBowen
by Member on Jan. 26, 2009 at 2:07 PM

Hun,

I can only say, one day at a time, one accomplishment at a time. I have three very special children all of which even at almost 29, 23 and 20 still make me wonder how to get through the day. Is your daughter ever going to be normal? At our house it's define normal, my normal or the worlds normal? My kids are normal according to their own abilites. My 24 year old was supposed to be nothing but a vegatable and that I should have put him in an institution at birth. He's working in the "real" world, trying to get his Master's in Business, looking for a girlfriend that will see his heart not his disability.

If you want to talk more, contact me at jbfreelance1@yahoo.com, I 'll be more than happy to talk. Been there, seen that and got the t-shirt, going back regularly.

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