How am I supposed to deal with this?
By Pekachu
@Pekachu (1112)
United States
January 30, 2007 12:44pm CST
I spent the last 18 years taking care of my special needs son by myself yes the state helped what was i to do no family was willing to help oh yes they said they would so when i got a job i would take a bus oh did i mention i have a fear of driving so i take a bus to work but if my son wasnt in school my sister with multipul sclerosis would watch my son i didnt think it was a good idea but she wanted to do it and mother dear mother promised if my sister were to get sick she would watch my son well that wasnt true because the first time she got sick mother calls me at work and says you have to come get your son so i had to quit working it was summer no one could take care of my son i know waaaa waaaa get over itt i did and continued onwith assistance from the state did i mention the xhusband was an alchohlic and thought he wasnt up for the task of taking care of us so off he went on with his life never giving us a thought or child support and i continued on taking care of my wonderful little boy oh we had some years that were not fun he has many behavior issues he has Prader-willi syndrome after all plus adha and ocd lets not forget the skin picking oh that was the worst but i manageddid i mention he still wets the bed i tried for years diapers watching him up every few hours till the point that i got sick because i wasnt sleeping enough but....We went on year after year dealing with school systems that just didnt want to deal with my sons issues they even kicked him completely out of a school thought that wasnt allowed but we went on put him in another school and the years went on just the two of us we have become quit a pair we can be so silly or very serious he can argue with the best of them oh that would be me laughing boy we have had arguements but in the end I love him and all is well well he turned 18 this year yup not that that makes a bit of difference here he may be 18 but he looks like a 12 year old and has the abilities of a 5 year old mouth like a teenager oh yes laughing but we go on oh 2 years age the courts finally caught up with the xhusband and now he pays support op but my son turned 18 remember so he no longer has to pay because oh yes this is true my son wont graduate from school before he is 19 so xhubby doesnt have to be responsible for anything more than paying the back support when he is working but!!! we go on and then today i get a call we cant assist you anymore because your son is 18 so i will not have insurance for my self did i mention that i stoped getting assitance 2 years ago because they cut off insurance and thats all i really needed but not to long ago the bills were piling and child support just stopped he must have gone on vacation or something so we got shut off notices and i went and asked for help just with the bills to stop from having things shut off and they did they offered to put me back on assistance i yes but i was told when he turns 18 you wont help anyways well they said they could so i accepted i got insurance oh i was happy i can finnally go and get a pair of glasses go to the dentist i really need to and go to the doctors i was on antidepressants before insurance was cut and had to just stop cold not taking them really not good so i thought great i can go to the doctors well i got a call today they are now suggesting that because they are getting strictor what it is is they are budgeting so they are cutting every corner they can that perhaps its time i put my son in an INSTITUTION!!!!!! because help has run out i broke out in tears and hungup I am very upset i can deal with the no assistance i will manage somehow We have been for years but to suggest that i put him in an INSTITUTION when he is doing so well with me just perhaps im just being sencitive .I know you all are thinkin well you know sooner or later but do you know how hard this is for me to even think of it just breaks my heart i know this sounds like just ranting makes no sence but i had to vent im very upset and thought i would type and ask what you all would do talk some sence to me
4 people like this
4 responses
@XxAngelxX (2830)
• Canada
30 Jan 07
My heart is breaking for you. What a tough time you've had. I don't know of any advice I can give you, I can fully understand why you cannot take on a job as it has to be a full time job just taking care of him, not to mention yourself. You must be so stressed out :( . I wish I could offer you some advice, but all I can say is add me as a friend and any time you want to chat or rant, I'll be here to listen. Best of luck to you.
2 people like this
@HeavenUnaware (1757)
• United States
30 Jan 07
I'm so sorry sweetie (((hugs)))
I think something doesn't sound right about this but I'm not expert so who knows. Maybe someone who has experience with this will come in and give you some great advice.
There has to be some way you can get help! I can't believe they would make you put your son in an institution. He is disabled, he should get disability shouldn't he?
I just can't imagine but I'm going to keep you both in my thoughts and prayers. Don't give up. There must be some help out there for both of you.
Stay strong!
1 person likes this
@Pekachu (1112)
• United States
30 Jan 07
he does get ssi and they are testing him now to see if is still disabled enough!! which also irritates me but we will go and do this test this assistance pays to keep a roof over our head so very greatful for that but they will give ssi to an acholic but give us a hard time about it he wont get better he gets worse . I thank you for your kind words i am going to stay strong just having a bad day today
1 person likes this
@mari61960 (4893)
• United States
2 Feb 07
Geez, sounds like you've been through the mill. I don't know if they can help but here is some info I found for you. If nothing else they may be able to direct you somewhere for help. I hope things work out with the testing for you and you don't have to wait too long.
Prader-Willi Syndrome Association of Michigan
Jon & Chris Hendrick
62 North Center St.
Saranac, MI 48881
(616)642-0017
chrishendrick@cablespeed.com
@mari61960 (4893)
• United States
4 Feb 07
Well I hope you can get some help. Sounds like he's doing very well at home. I wouldn't want to send him to a group home if he was mine. Maybe if he wanted to but not just because they would rather pay a group home than me.
@Pekachu (1112)
• United States
2 Feb 07
thank you I am familiar with the pws association
there really isnt much they can do im not interested in putting him in a group home and he is not ready to leave, he is a mommas boy lol and that would be the direction the association would go most kids with pws are put in group homes at 13 and 14 years of age my son is doing really well with me he is not over weight and not difficult to live with
1 person likes this
@blueskies (1186)
• United States
5 Feb 07
Oh Honey, I'm so sorry I didn't see this sooner. You have expressed my worst nightmare, that my son will have to go into an institution...
What I don't understand, is that they would suggest this when it would actually cost them MORE money to have him institutionalized. If he were to live in a group home, the state would be responsible for all of his needs, that adds up to much more than what they are paying you now.
My son doesn't even qualify as disabled because he is not mentally retarded and he is sometimes capable of functioning on an almost normal level. I have no idea of what I will do when he turns 18 as I doubt he will be able to hold a job or live on his own.
Just keep doing what you've been doing. You know that your son is and is not capable of, so make sure that you file all the appropriate paperwork and have him tested. It makes me crazy that the system that is supposed to help families of disabled persons is constantly looking for ways to cut services.
Put him in an institution, indeed! That makes me furious!
