I feel like walking away!

Discussion in 'General Parenting' started by Icantdoitanylonger, Aug 12, 2011.

  1. Icantdoitanylonger

    Icantdoitanylonger New Member

    I have 3 disabled boys how are 3,6,and 7, I am the main caretaker. I am with them all day everyday. My husbands works to support us and works over nights. All my sons have a list of problem ranging from Developmental delay, speech delayed, to brain defects( most of which doesn't cause any delays) and ADD/ADHD. I have been fighting an ongoing battle to potty train my 6 and 3 year old. Both who know where to go potty and how to use it. My 7 year old who has the worst delays potty trained in one week. But I cant get the other 2 to do it. I have tried everything the pediatrician says it is all behavioral (with the 6 year) and the 3 year old is just stubborn. The 3 year old will sit on the potty for 10 to 15 mins than get off and pee on the floor. My 6 year old will go pee in the potty when told to but not otherwise. My three year old will start crying as soon as he pees on himself because he knows its a no-no. They both will tell me when they poop are pee on themselves and ask to be changed (When in a pullup) They will also go and get a new diaper baby wipes and a bag to put it in. They sometimes even play with their poop and will poop in the bathtub. Along with everything else I am going through with them, I don't think I can do anymore. I feel like the worst parent when I yell at them or punish them. I have to admit that I do let them get away with a lot of stuff because of what is wrong with them.
    I use to have a break from them when my mom lived close by but she moved 5 hrs away and now it is only me and my husband. I don't think he understands the stress and the pain I go through to make it through some days. As my boys have seen almost every kind of doctor there is. WHAT AM I TO DO???? I love them very much and I fight for them!!!!!
  2. HaoZi

    HaoZi Guest

    *hugs* hon. Are you getting help from any social service agency? Wrap-around services and respite might be available to you. Reach out and take every bit of help they can give. Push for more if you and the kids need it.
  3. InsaneCdn

    InsaneCdn Well-Known Member

    Hi - and welcome.
    Glad you found us - sorry you needed to!

    Could you give us more details about your sons?
    What have they been diagnoses with? by whom?
    Who is involved in their care? (pediatrician, psychologist, psychiatrist, neurypsych, social worker, etc.)
    Are they in school (based on age, the older two "should" be in some school somewhere)? What is the set-up there?
    Behavior issues?

    Any details will be helpful... other parents on the board will come along to offer advice, but I know they will start by asking questions...

    You might want to create a signature... mine is brief (see below), some are longer, but it gives a reference point to the other parents when responding, as to what the situation is.

    You've obviously lost your "respite care" which was your mother.
    If your sons are severely disabled, surely you would qualify for some sort of formal respite care?
  4. TerryJ2

    TerryJ2 Well-Known Member

    I second the request for more info on your kids.
    Meanwhile, I completely understand the stress you're under.
    Are you a member of any church, book club, ANYthing where you can call someone to get a few hrs to yourself?
  5. JJJ

    JJJ Active Member

    All 3 of them should be getting services from the local school system. Have you been able to get that help?
  6. Icantdoitanylonger

    Icantdoitanylonger New Member

    [h=2]Re: I feel like walking away![/h]
    Hi All,

    I will start with telling you whats wrong with each of them and what they receive.

    7 year old son- Has ADD,microcephaly, craniosynostosis of the Bilateral Coronal and the sagittal suture, speech apraxia.Nero apraxia, Developmentally delayed learning delay.
    He receives= speech,Occupational Therapist (OT)(both in school and private) We have pediatrician, a Developmental doctor,a Neurologist,

    6 year old son has-ADHD,
    microcephaly, Developmentally delayed, learning delay,Speech delay, agenesis of the corpus callosum,chiari malformation.
    He receives=speech,Occupational Therapist (OT)(both in school and private),adaptive P.E.We have pediatrician, a Developmental doctor,a Neurologist.

    3 year son has-microcephaly, craniosynostosis of the sagittal suture, speech delay,low tone,Developmentally delayed, learning delay, alpha thalassemia trait.
    He receives=speech,Occupational Therapist (OT),PT(both in school and private) adaptive P.E..We have pediatrician, a Developmental doctor,a Neurologist,Neurosurgeon,hemotologist

    They all have an IEP.
    I don't have a church or a group of friends that are welling to help. We live near my husband mother but she wont keep them all at the same time for more than a hour. I handle most of the Dr. appointment.

    If you need to know anything else just asked.

    Amy ​
  7. InsaneCdn

    InsaneCdn Well-Known Member

    {{ hugs }}

    I can't imagine the load you are under.
    These are complex medical issues.

    I'm not familiar with your system there...
    Here, you'd qualify for at least 1 week a year (often 2 weeks are allowed) "full respite" at a therapeutic foster home or similar. This is your "vacation" time.
    AND you'd qualify for several hours of "day respite" per week. For example, they might give you 3 hours on Saturday morning... this would be time for you to run around and accomplish errands, or clean the house, or go to the gym for a mental (and physical) health break. Basically, its recognition that nobody can care for these kids 24/7 - if they were "in care", staff wouldn't have more than 12 hours, and in "foster", there would be weekly and monthly relief. So... if you are willing to keep your kids out of care, the system tends to find ways to support you.

    But you'll have to find someone who knows how YOUR system works.
  8. TeDo

    TeDo Guest

    Welcome to our little corner of the world but am so sorry you needed to find us. Can you give us a general idea of where you live (state name is sufficient)? That might also help some here to give you more specific advice about services in your area. I agree with approaching your local government Social Services department AND Public Health department. They should all qualify for personal care attendants through a health agency based on their medical issues. Social Services should be able to offer respite care for you. Check into both of those.

    In the mean time, many many {{{{(((HUGS)))}}}} to you. Stick with us and you won't regret it. These parents are AWESOME and have saved my sanity repeatedly.
  9. Liahona

    Liahona Guest

    Wow, you really need respite care. I had to look up most of the words that describe your kids. Does the 3 year old go to pre-school? Could school time be your time to yourself? I found some respite care by googleing respite care and my city. Sometimes there are organizations just for respite care.

    A book that has helped many here is called the Explosive Child by Ross Greene. I realize that it is mostly for mentally ill children and yours have neurological problems. I still feel that it might help. Dr. Greene teaches a new way of parenting where your not trying to fix everything at once. You work on the most important behaviors first. It helps with difficult children.

    My kids also have problems with potty training. difficult child 1 would get mad at us and pee in a corner in his bedroom. He still wets himself at school and has to take a change of clothes just in case. He is 11 years old. difficult child 2 still smears poop on the walls. Its frustrating and gross.

    I understand about the lack of help. I have family around but the only one willing to help me is my 84 year old grandfather. We've even not been invited to family parties because the other family members don't like my kids. (The last time this happened was only last week.)
  10. Icantdoitanylonger

    Icantdoitanylonger New Member


    We live in Baton Rouge La.
  11. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Popping in to say welcome. Also sending gentle hugs your way. I know what it's like when there is no one around to help and I have my husband to tag team with.
  12. JJJ

    JJJ Active Member

    You are under a tremedous amount of pressure. If husband can't handle all 3 by himself, can you arrange for your mother in law to come help your husband with the boys on Saturdays for 5 hours? That would be your time to recharge -- go for a walk, see a movie, read a book, etc. Just leave the house!
  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Wow Im so sorry your kids have so many issues going on. It has to be so hard on you. I would look around for some sort of respite. I dunno but I throwing out things just off the top of my head...Easter Seals? That thought just came to me when I think of physical disabilities.
  14. Icantdoitanylonger

    Icantdoitanylonger New Member

    What does respite do exactly?
  15. InsaneCdn

    InsaneCdn Well-Known Member

    The "several hours" break respite care is essentially highly skilled child-care - people who know how to care for special needs kids like yours. Either they come into your home, or you take the kids to them.
    Longer-term respite (a week or more) would be like a foster-home or care-home environment - again, people with training in how to deal with these kinds of kids.

    These would not be your typical teenage babysitters!
    Not even typical day-care staff.

    Probably some medical training, at least. Quite expensive, which is why you want the system to pay for it.
    Usually, the system doesn't mind paying for respite... because the alternative is that you turn over the kids full time (due to your own health being affected, for example), and that costs way more.
  16. keista

    keista New Member

    Respite is time off for you. You've got not one, but three children with some rather serious medical issues. No one person can care for them alone. You really NEED to get some help.

    Everyone's suggestions for places to look were good. You just have to keep looking until you find the help you need. You might also try asking at all the Dr's offices if they can point you in the right direction. Do they get SSI? You might be able to contact them and get help. The help can be in the form of a day nurse or such care. Are there any local support groups for parents of kids with disorder such as yours? You might not be able to get out to a meeting, but a call in might get you a home visit and give you information on other resources.

    ((((HUGS)))) You are overwhelmed, and rightly so. No one can be expected to keep going like that 24/7 without a break. I hope you find some real help and time for yourself, and soon. Until then (and even after), we're here for you.:notalone:
  17. Icantdoitanylonger

    Icantdoitanylonger New Member

    Well the in home sounds like what they call a home health aide, here in Baton rouge. I will have to look into it.
    My kids have a lot of medical problems but most can't tell anything is wrong unless they ask. They listen very well for kids their age and with their delays. The reason my husband mom doesn't like to watch them is because she doesn't tell them no and they do whatever they want with her. We have told her she has to be stern and punish them. However, she fells to do this. So she will only watch them for a short time. Thanks for your help!
  18. TeDo

    TeDo Guest

    A home health aide is usually through some kind of Health organization. Funding for a respite provider is usually controlled by a social service agency. In our area we call the state or county Human Services (Social Services) department. Maybe try googling Louisiana Department of Social Services to find contact numbers. They are similar services but also very different. You might be able to get both if you dig. Good Luck.
  19. cubsgirl

    cubsgirl Well-Known Member

    Others have given you excellent advice, I hope that you can pursue some respite time for yourself. You have a lot going on.

    Just wanted to add welcome and ((hugs)).
  20. HaoZi

    HaoZi Guest

    It gives you the break you need while knowing the kids are being watched by someone that can handle them so you don't have to worry (as much). For rest, sanity, quiet, an uninterrupted bubble bath or uneventful trip to the grocery store. It's "me time" that everyone needs.