Talk to me about support systems

[pipsqueak]

Specifically how to build one.

I thought I had one available.  I am in my local Down Syndrome mom's group;in addition to my husband and children, my mom and two of her siblings and three of their cousins plus one of my cousins live in close proximity; my 20 year-old and I graduated from the same high school in town and I'm in contact with my classmates (and some of ds1's teachers) on Facebook.  Most of my friends don't live close by but I figured I had enough acquaintances in the 2 groups that would help if needed.

In January 2017, my 20 year-old was injured in a car accident and ended up having surgery to stabilize a pelvic fracture on the same day (and same time) that Pip was having his adenoids removed in a different hospital.  My mom got super sick while sitting in the surgery waiting area for ds1.  She was out of commission for almost a month.  We ended up caring for ds1's puppy because my mom couldn't do it, plus ds1 moved back in with us which resulted in Pip getting booted out of his room.  It was a stressful and overwhelming time.

I reached out to all groups listed above for help and the response I got from the mom's group instructed me to hire a local teen/neighbor kid to walk the dog and to take people up on their offers of help.  Problem was NO ONE  offered to help - except my boss at the fast food restaurant I work at and he did buy dh, Pip, and I our meal when we stopped by to discuss my work availability for the following weekend and one classmate responded to our need for threshold ramps to get a wheelchair in/out of the house. In mid-February, at dd's birthday one of her friends met ds1's puppy and discovered we needed help with walking the dog and so he's been stopping by several times per week to walk the dog but very few of ds1's friends have helped.  From early January through mid- February, everyone we asked for help with walking the puppy or finding a dog walker refused or reported back with no results.

This was the second time my extended family turned their backs and refused to help my family during a crisis so I know I can never count on them.  

Based on this experience, I'm not sure how much I can count on classmates/local DS support group as a part of my support system any more.  So how do I go about building a support system that will actually be supportive?

[mrsbuttinski]

It sounds like a hellish couple of months there.

I am sorry you didn't feel supported during that time. It's hard.

IME, many disability support groups limit that support to information and commiseration- not the kind of hands-on help people need sometimes. From what I have seen those with kids who have special needs aren't any more likely to step up than other friends and neighbors are even when they appreciate the specific challenges you might be facing. Sometimes, they're too busy; sometimes they assume someone else from a different social circle will be there for you.

Help tends to come from family, close friends and often- as @kitchen, said- faith communities. I am not surprised a bunch of 20 year olds didn't step up; they tend not to be a highly evolved and empathetic age group as a rule. Perhaps, if your son reached out to one personally he could have found someone to take the dog. Although if his friends are at college or living with their parents this might not have been an option.

[pipsqueak]

Apr 5, 2017 7:07:28 GMT -5 mrsbuttinski said:

It sounds like a hellish couple of months there.

I am sorry you didn't feel supported during that time. It's hard.

IME, many disability support groups limit that support to information and commiseration- not the kind of hands-on help people need sometimes. From what I have seen those with kids who have special needs aren't any more likely to step up than other friends and neighbors are even when they appreciate the specific challenges you might be facing. Sometimes, they're too busy; sometimes they assume someone else from a different social circle will be there for you.

Help tends to come from family, close friends and often- as @kitchen , said- faith communities. I am not surprised a bunch of 20 year olds didn't step up; they tend not to be a highly evolved and empathetic age group as a rule. Perhaps, if your son reached out to one personally he could have found someone to take the dog. Although if his friends are at college or living with their parents this might not have been an option.

Unfortunately, I barely even got that from the group.  I had one mom say that it would be okay if I reduced Pip's therapies  from 3 trips (PT 1x, and OT & ST 2x per week) to just 1 trip for a couple of weeks if I needed to (the only helpful response).  The other responses told me to hire someone to care for ds1 (not within our family resources) and to delegate tasks to those who offered to help.  Beyond that there was no other response.

FWIW, many of my classmates (went to a church run high school) are also members of my local faith-based community.

[luvboston]

I have an amazing family but one thing I think you could do is contact someone in your family and say look we have a very difficult situation if we have an emergency can you be our person that helps and list what you need them to do.

Beside family basically you have to make a best friend who will drop everything and help you and I only have one of those. But she was like finding a needle in a haystack.
Otherwise you need to buy the help. My mother hires local college students to do things all the time.

I'm sorry no one was there for you.

[luvboston]

Also who is in your will to take care of your kids?

[pipsqueak]

Apr 5, 2017 12:30:06 GMT -5 luvboston said:

Also who is in your will to take care of your kids?

We're hoping that my now 20 year-old will be in a position to care for his younger brother (my only minor child) before anything happens to dh and I.....otherwise my brother (lives in a different state)

[chickypoo2468]

I could be wrong, but I think that support groups are there more for emotional/mental support rather than hands on. I can't speak for everyone, but any more than that would require me cancelling my own child's appointments and juggling my other kids around (which they already only have school because I don't have time for anything else- cue the mom guilt). I don't have any support system of my own to fall back on in order to make that happen.
I would definitely look into a church for help, I'm not sure if respite care is an option for you but maybe look into that. Ours is provided through the state but of course the disability has to qualify.
I'm sorry your family wasn't there for you. I do understand how that feels and it's very lonely. Maybe try talking to them and letting them know how they made you feel?

[pipsqueak]

I guess I never considered respite care since Pip is in school currently M-F from 8 (when he gets on the bus) to 1215 (when bus drops him off) so I was using that time for dealing with ds1 stuff/getting as much stuff done around the house without Pip as I needed to and occasionally even some me time.

As far as the mom's group, I think it disappointed me that there were so few responses to me posting about being overwhelmed with trying to juggle everything and knowing I needed to drop something but what? What could I drop with the least negative effects? There wasn't much hands on help I needed - only walking/playing with the dog because I couldn't walk/play with the dog and take care of things inside the house simultaneously. All I really needed from them was someone to ask how I was doing or to invite me to meet up just to chat over cup of tea/coffee. Maybe I'm wrong, maybe the group is only there to talk about heart surgeries and other medical issues that Pip doesn't have; which doctors are "THE" doctors to see; which school districts are the school districts to move to; etc.

Regarding my extended family: this is the second major time they have been unsupportive of my children and myself. The first was when we were dealing with the abuse from XH and they practically accused us of lying - then when he was convicted of the crimes the topic was taboo because dd/we should be "over it by now." I've informed my mom that from now on as far as I'm concerned my family only consists of her, my brother, my husband, and my kids....and kind of my father. There have been other minor things as well that aren't worth mentioning specifically. I'm just done with them - for my sake I have to be.

[zaraceligon]

I'm sorry pips, I don't have any advice. My only experience, when my kids or my DH where on the hospital and I have to take care of everything by myself, was to prioritize the importance thing the has to be done during those days. Some days I have to cancel and reschedule my kids apt. I found a way to get waked up very early and do the cleaning and laundry, I lied about the age of my boys, for them to be able to see their daddy when he was at the hospital. The best thing is to listen music ant try to organize your day the way you will be able to come out with out to much estrés.

[freezorburn]

A couple of years ago I joined a local single parents group that has a presence both on Meetup and FB. As well as being a source of emotional support, I know that people have had work parties to help a mom with MS fix up her house so that she can rent part of it out, and people have helped each other to move, or set up meal trains when someone was injured or sick. Some people watch each other's kids, after they have become good enough friends and figure out the logistics of it.

From what I gather, this group has been around for 10 years or so, and it sounds like the current core group of people gelled about 5-6 years ago. It started out on Meetup, and then one of the mods set up the FB group, which gave people a place to interact in between events. And the events were varied enough that there was something for everyone. I guess other than everyone being single parents, it was never so narrowly defined, so there was room for people to develop friendships and be able to talk about the support they needed, and what they could offer.

So, this is one example of a non-church related support system. Takes time to build. It's possible. Happy to talk privately if you want to know more about what I think makes this group tick.

[chickypoo2468]

I do feel like a single parents group would be much different than a special needs family group, but that sounds really nice.

[freezorburn]

Apr 7, 2017 16:01:38 GMT -5 chickypoo2468 said:

I do feel like a single parents group would be much different than a special needs family group, but that sounds really nice.

Sure, it's different, my point being that there are things about the way the group is set up that it might be possible to replicate a similar dynamic, with a different common thread.

Coincidentally (or maybe statistically) there seems to be a high number, and range, of SN kids in the group. SN issues come up frequently in discussion. Forgot to mention.SaveSave

[URMySunshine77]

You might want to contact a local high school to see if any students would walk the dog to count as volunteer time. I have heard that a lot of students need to fulfill a certain number of hours of volunteering these days. You could offer to write a glowing rec letter for the future.

[pipsqueak]

Apr 7, 2017 17:29:46 GMT -5 URMySunshine77 said:

You might want to contact a local high school to see if any students would walk the dog to count as volunteer time. I have heard that a lot of students need to fulfill a certain number of hours of volunteering these days. You could offer to write a glowing rec letter for the future.

Yep, did this.  I'm thinking no one volunteered because, realistically who wants to walk a dog during a Nebraska winter.  I jokingly told ds1 that next time he spins on ice and slams into a pole it better be in the middle of summer.  

I did talk to one of the local moms today (She is a Norwex consultant and I attended a Norwex party last week).  I got the impression that she's given up on the local moms group as being a supportive group even for DS related issues due to her own interactions with them.  

She recommended I contact a specific mom that used to set up an unofficial "moms group" get together to see if they still get together during her son's book club meetings and if not try setting up something similar on my own. Apparently, the mom would send out an open invite to join her at Panera to keep her company while she waited for her son.  Sometimes she was alone and sometimes she had a huge turnout.