How would you like friends or others to help you? or how have they helped?

[peglem]

My daughter is pretty low functioning and the first thing that came to mind was to give me a break, but, it would be so difficult and time consuming for them to learn how to care for her. But, then it occurred to me that what would be really nice is if someone would run errands for me. It is HARD for me to get away most of the time, especially when my daughter is ill (which she is often). So I end up waiting until she is asleep to do grocery shopping or to pick up items that my other kids need for school. That means I have to go to Walmart (I HATE that store) because its the only place open in the middle of the night. It also means I give up sleep, which is already in short supply!

The other thing that occurs to me is to be understanding when I can't go out to do things with them(friends)- I'm using my daughter as an excuse, because she makes it so I really can't-not because I don't want to. Be patient if I spend an inordinate amount of time talking about my daughter- she has become at least 90% of my life, and I need to bounce ideas off of somebody or just think out loud sometimes.

[Mother's Heart]

Something loving that has been done for me:

My son has autism and has great difficulty dealing with being in formal settings...like a class or worship service. The men's ministry at my church volunteered to spend time with him in a separate area duing worship so I could participate in the service without coming out totally bruised and exhausted (their perception...I didn't mind). THey set up a schedule so they alternate who stays with him. They have spent time with him...come to know him that way, and ministered to my heart by learning to understand our relationship and my son's value as himself. After time they began to watch him during another hour on sunday's so I could attend the bible study class. Now they have continued to do that to allow me to teach the pre-primary children's sunday school class, something I would not have the freedom to do otherwise. Once they began to understand that my son was more than just a bundle of difficult behaviours, they began to work with reading to him and teaching him. Now I'm asking them to help me help him learn to participate in the children's classes and worship time.

more than all that...the best thing that has happened for us was the people at this church showing total acceptance of him (and us as a family) as he is. The respect for my child touches and heals my heart in its innermost part.

What I wish:

I wish I had somebody comfortable with providing respite outside my home so I can: CLEAN MY HOUSE! (I'm afraid if I had control of funding for families of disabled the first priority would go to housekeeping. ;)) That alone would relieve a lot of the stress in our world. I've got respite funding. I just don't have enough folks able/willing to provide the respite.

the other thing I'd like to have time to do is clean/care for my car. I can't keep my son safe out there with me while I vacuum/steamclean the car or change the oil etc.I've often thought it'd be a nice ministry to offer car care/detailing to single mom's. This applies doubly to me since I'm a single mom with two disabled kids.

Something I used to wish for was having more time to spend with my child. relaxing with my child, building memories other than therapeutic/medical ones. I wonder if folks would like to have someone occasionally do a time-consuming job so mom can take the time to chill at home or at the park with her kid without the pressure of having to get everything done (most homemaking tasks/errands take so much extra time when you have to include meeting the needs of your child while you do them that there's no time left to relax together)

I know many folks need respite to maintain their sanity but I never felt that way. Instead, I was reluctant to give up any minutes I could spend with my kids. I needed more time for that.

I think it would be cool if someone volunteered to go along to lend a helping hand with us to community activities....so we too could enjoy them safely and thoroughly. Also, something that I would've valued was to have someone go with us to dr. appts...to help manage the kids in the waiting room or exam room. These folks could also then be a source of social comfort and encouragement because we would be spending time together. This would keep me from never seeing another adult except when I drop my child off at their house because I have to go to an appt or IEP meeting for the other one. PLUS, the big plus is, it takes away the message that my child is just too much trouble to go do anything, like shopping, back to school night, or a parade or show etc so they just have to be separated and 'maintained' while I go do all the fun or 'important' things. We could avoid giving the child the message that he is not important and doesn't deserve to experience the interesting bits of the world.

Brainstorming other ideas:If a parent spends a lot of sleepless nights tending their child a nice ministry might be for someone to come to the house and keep an eye on the child while the parent takes a nap.

I'm seeing a common thread here...like any type of ministry, what really counts is giving your time to meet needs, lighten loads, and show you care. Show that, more than just an occasional sympathetic word in passing, the person is worthy of your time sacrifice to help with what they need. The kinds words are usually welcome but ....

I think many would benefit from telephone calls just to talk. Caring for a child with behavioral or physical disabilities is so isolating. (people always assume I can't talk, since my world seems so overwhelming to them they think I must always be busy). Sending a note or card, to the child or the parent, to show you remember they are there, even though their responsibilities for the child might mean they are rarely free to come socialize with you.

hmm. maybe being available to call in a 'mini-crisis'. For instance, I'm out with my child, and the car breaks down. I need someone to get me and my child/his equipment home, or to the garage. Someone, (or a list of someones) I can call to go pick up my other child from school if I'm in a doctor's appt or IEP meeting that runs into overtime, or I'm at the hospital with one child and the other one needs to be taken to school or to some other event.

We have friends, a family in our neighborhood: the mom had cancer and was on hospice before she passed away. the girls were 15, 8, and 4 yrs old. Their church was a huge support in many ways but one way was that some of their college girls became mentors for the middle girl. maybe for the others too, i'm not sure. They would come and take her to do things, helped her shop for school clothes, etc. This gave her a break from the stress, an outside confidante, some 'me time' and also some feminine input...that's a rough job for a dad to have to take on totally on his own. I think they still do this, though it's been 9 yrs. since mom died. Sometimes ministry to the siblings is also ministry to the parents.

eta: wow. it took out all the spaces I put between paragraphs and separate ideas. I'll try to change that. Fixed. goodthing, it's hard enough to read WITH the spaces in.

What about an SN parents support group, or bible study group? complete with babysitting/respite carers?

or setting up an online support group? e-mail group? prayer partnership?

What about volunteering as one-on-one helpers to go with your child to church classes and activities so the child can participate without the parent being the one to do the facilitation? I want my child to be able to participate in the youth group....but don't want to intrude on my other child's independent time in the youth activities.

[MomOTwins]

Mother's Heart had some great ideas, I really wish we all lived close enough to each other to be able to do hand-offs like these for each other. Knowing what other parents go through makes it easier to be a giver when it comes to helping them out, I think.

I'd love respite for a weekend, just to do something as a couple again, but finding someone to watch our kids for overnights is just too hard. We have one friend who does it for us if we can preplan WAAAAYYY in advance, as she is a home health worker for senior citizens and is usually booked up with her clients. One weekend away as a couple since the kids have been born (and they are 10-yrs. old now) is way too little time to recharge our "couple batteries", as far as I'm concerned. Even parents of NT kids get away more often than that! Some form of couples retreat where you could get away to focus on the two of you would be great, especially if kid care was included.

Summertime day camp for the kids would be great, even if it were only half a day of physical fun/pool time. I'd happily drive them back and forth to camp if there were something like that available near us. We live in a rather rural community and this kind of this just isn't available.

[Mother's Heart]

aye aye aye...sorry..i talk too much. I hope something useful comes out of it, someday.

Our Easter Seals has a Camp Friday....Friday nights for a few hours the kids were all invited to one location (they used the lobby of a senior care center) and volunteers, including nurses and big kids :) conducted activities and cared for the kids while family took a break. This was nice, but physically tiring for me at the time. Eventually it became too popular and my kids were overwhelmed by the crowd. I've heard of a church, I think I heard of it on this message board, which does a similar thing...providing a monthly parents' night out by providing care and activities for their SN kids. Maybe that was you that posted about it even.

I used it to do my Christmas shopping. THAT would be a nice thing....someone to entertain the kids during Christmas season so parents can Christmas shop together. I often had to shop WITH my kids along.....actually did that THIS year too. Not ideal.

[AKF]

I think some helpful things would be to offer to run errands or to watch the kids while the parent runs errands. It would depend on what the parent and the volunteer are comfortable with.

A real help would be to volunteer to provide rides or to help with the siblings activities. Sometimes it's so hard to let my other kids be involved in things they want to try because I have to consider how hard it will be to get them there. I've been able to lead my daughter's Girl Scouts and basketball teams because my husband is around to help, and because we have respite. If I didn't have both of those, I wouldn't be able to do those things.

There are several people at church that interact with Keith, like his Sunday School teacher, and an older lady who lets him sit by her. She makes him speak to her every Sunday, and helps him to be quiet in church. (He doesn't want me to sit with him anymore! I guess he thinks he's too old) But it's nice for someone to help out with him at church.

[milivica]

Wow, that's such a good question with so many answers....I can't think of one!

I think for me, the best thing is when people look at my son and my parenting with NONjudgmental eyes, just take in what they see AS IS with no preconceived notions or assumptions my son's motivations for saying or doing something are for an ulterior motive. When my son pokes your stomach (weather you're a man or woman) and asks how many babies you have in there, it's cause he loves babies and things the more the better and it's cool you have some in your tummy....not cause he's insinuating you're fat.

Don't look at my son's behavior, or my response to it with malice or judgment, you probably don't really know what you're seeing. To keep in this thought in mind when they see my son and I, "I know she's doing the best she can, so is he and that's good enough!" and maybe too, it'd be nice if they had a better sense of humor, social blunders can be pretty darn funny sometimes.

[all for Him]

These are great suggestions! I can relate to so many of them.

I'm getting all my info together and planning for how I am going to present this conference breakout session. It's being held in April. I am presenting it with a friend who has been so helpful to me. She has done many of the things for me that you guys have suggested.

I know as special needs parents we all have different needs and opinions even thought many are the same. I'm try to think of an easy way that a friend can ask a Mom how they can help them. How would you feel if the friend said she attended a conference that had these suggestions, showing you a list of suggestions, and asked if any of those would be helpful to you? I figured I would tell them to mark the ones they would be willing and able to do.

I know I have felt guilty and timid to ask friends to help and thought that I might be willing to ask them to do something if they suggested it and told me they were willing to do it.

I'll keep you informed and hopefully will be able to pass on information to you that you will be able to use to help you :)

[Isabelle]

i had a lot of support from friends, neighbours, from homemakers and workers. i cannot complain.
now, i remember that he had the tendency to run, but i noticed if i put him in a shopping cart or rented a shopping mall stroller he was happy and super quiet looking around, and so i did that until he was 11, by late that year and after thorazine it was impossible, he was noisy, loud vocal sounds, wanted to touch everybody/thing and didn't want to sit. his excellent worker notice the changes and we were told 'hormones' and 'testing our authority' ....:rolleyes:'

[peglem]

What the :confused:

The post that started this thread is gone and my name is on the original thread title as the author. I was only the first responder, in case anybody else is confused- and the first post was an answer to the original thread starter.

[Mother's Heart]

Isn't that weird? I noticed the same thing happened to this post on Child Neurology. Strange.

Can moderators delete the thread starter? really weird. I don't remember now who started it...but I remember recognizing them.