Re: How can my family get help to the nasty comments (contact me at [e-mail])?

Question

First of all if those of you that did not read the whole story should not be so freaking mean. If I could get a job I would. Like I said in the first thing I wrote I have a disabled child who has hydrocphalus, epilepsy, Asthma, and AD/HD. He is seven years old he has had 9 surgeries within the last 10 months and had 20+ brain and back surgeries. Him being sick keeps me from having a job. I am not asking for hand out from nobody I was asking how can we get help to make him comfortable because he is growing and want his own room. Because of his epilepsy he can't sleep by himself or bath himself. So he sleeps with me, his father and brother. It is a shame how people can be so cruel to other individuals. The first thing you say is get a job and don't know that person story. But if something happen to you then what. My son did not asked to be born no. We did not know that he was going to be disabled. No one knows if their child will have disabilities.

Answer 1

I feel your pain. I have a daughter who has seizures, cp, microcephly (small head),dd, doesn't talk. Have you considered putting a baby monitor in his room? That's what we do for our daughter to hear her seizures. Then he can have some Independence. If you like you can email or IM me, maybe I can tell you about some services that might help. Also do you have your son on the Keto diet? Good luck!

Answer 2

i hope i wasn't one of them. i just know where you are coming from. you should have added the stuff about your son. have you heard of ACC (agenises of the corpus callosum). what your son has, sounds so much like my daughter. she is 5 and well, she has asthma, seizures, she did have hydrocephalus, but in her case it was the pinch version that went away after birth. your child sounds like the version we feared would be our child's problems. my daughter has to get a new MRI and she is suffering from chronic headaches. i will pray for your son. i am truly sorry if i hurt your feeling. my own family is going thru this also. i have a middle child that may be ADHD (getting her tested) on top of my 5 year old problems. you should try the united way. or even ask the SSI office if they have any program to help make it safer for him. his health could be at risk and its not your fault you cant get the job and stuff i am in the same boat. we got lucky we got on government housing to get a safe house to live in, the down fall is having to answer to them every year and not having the freedom to do as we please at home. i am truly sorry if i hurt you. i pray the lord gives you strength with all that you have been thru and that your son be healed.

Answer 3

are you on any government assistance? if you are on housing assistance your doctor should write a letter saying the boy needs his own room due to his physical problems and maybe they will be able to get you a larger apartment . I know this has to be terribly frustrating, but there has to be help out there somewhere. i really just dont know where, you might go to your local library and ask if they know of any grants for dissabled people, that you can apply for, i know they keep the catalog of grants there and you could write down addresses and formulate a letter and send to any of the agencies and grant giving organizations that could help you. i dont know where you are or anything, im sure you could start with local organizations and branch out. surely some are listed on line too. i would help look for you if you want to send me a private message and tell me where you are. hugs

Answer 4

You can get SS for him...Call Social security and you can also get In home supportive services, they will pay you to stay how and take care of him...You also get medical, its union now i believe....I think its close to 1400 hundred a month for you and 800 for him or more....