MOMINSTRESS.... I did not want it to get lost as fast as this board moves!

[anjel75]

Does your son not qualify for some respite hours? If he does, you may want to take his case manager up on the offer! Go get your hair done, pedicure or manicure.... Don't feel guilty for needing respite, that is why they are there! You need some time to just concentrate on yourself. Call his case manager and let them know you need some a respite worker. Chances are it has already been put into his treatment plan or PCP, whichever and has already been approved. It is probably on the plan but you haven't used the hours. I bet because you feel guilty because he doesn't have dad right now. Its ok! Most all of those respite workers are very qualified and you may be surprised as to they will probably bond. If they aren't clicking, let the CM know and they will find another.... You deserve it hon... He deserves it.

[dyblue]

I too have a severly disabled son and the respite money we get is 198 a month not much.  My son goes to school not the reg program a special one so that my break.  I live in canada and we have what is called the at home program all his diapers and wheelchair etc aare paid for so I am grateful for that.  momistress do you have something like that where you live.  you can apply for grants too I did and we bought a wheelchair van.  investigate sometimes people don't get the info to you.  It a hard job and you need all the help you c an get.  the caregiver has to take care of themselves to take care of others right .  all the best.

[mominstress]

We do not get respite.  My son is autistic.  However, I do have some family resources here to use to get out.  We have 30 hours a week of inhome therapy.  I do about 12 a week of that.  Other therapists come in to do the rest.  Thank you for your help and answering me.  It means a lot to me.  I will get out.  I was so scared to post here, but it is really helping.  

[dyblue]

does your son go to school with a teachers assistant my does and its fantastic,  I was so worried but there really is a whole community of special needs.

[anjel75]

My job title is ASP/HIM. That is the official one but what I do is medical records. I do the medical records for a case management company that provides case management for MR/DD/CAP and some mental health customers. My husband is an actual case manager for this company. You HAVE to have a case manager, right? In order to get anything, you have to have a case manager to send in plans, MR2's, SNAPs, crisis plans, IEP's, and authorizations to the people your state deals with. Your case manager, if they are worth anything, should be looking for grants and looking for you to have more respite money and all of the things that you are doing. If they are not doing this, you are with the wrong company and need to find another one. I know a lot of times people think the same way. Well, I am getting some of the things I need, no need to ripple the water. DO ripple that water! Whether you are not paying out of pocket for some supplies or not! We have Medicaid in my state and that is what most of these kids fall into, Medicaid. Just because it is Medicaid and you aren't paying for some things, demand more! You are the boss! Taxpayers are paying those things and I am sure that at one time, both of you were working and paying the same as we do now. You and your sons deserve it. I AM a taxpayer and part of that is paying for these people who need our help. Not alot of us would give if it were an option, on the same measure, we are not sure where the money goes so we can't say much, but you guys can! DEMAND more! If you don't get it, switch companies! It pisses me off that your kids, along with the rest and you guys, as parents, do not get or don't even know what you could get, due to slack ass case managers!

[dyblue]

Yes it true you have to ask nobody going to just give it ti you.  My son's ot is very good we are getting a safty bed because he is 9 and needs a special bed.  Our family has been very fortunate.  Its harder I think when the child is not obiously handicapped ie looks different . can't feed himself like my boy.  Autism I've heard it called the hidden disability because some of these kids can be geniuses.  Horse back riding therepy is very helpful my son really comes to life when hes on his horse.  theraputic riding.  I call it horse medicine the at home program pays for that too. Mominstress do you like horses the children really benefit from this its help my boy sit up by himself.  there s quite a few autistic children where we ride.  my other son is hyper I hoping he can ride there too although I 'll probably have to pay for him its worth it he been diagnosed adhd.

[anjel75]

I am so sorry for you guys and that you and your kids are not getting what the taxpayers are paying for and you too! You just have to be mean! If you can't get the right service, go elsewhere! It can be much different when you have a case manager who cares!

[mominstress]

Thanks everyone for caring enough to post to me.  Trust me, I am a good manager of my son's therapy.  We are getting lots and are very grateful.  He is making great gains.