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Posted

How many of you belong to one? If you don't, would you be interested in joining one? Another lady and I are starting a special needs support group at our parish. I've had interest from two other families so far. This is something that *I* really need, but I'm not getting much response from other special needs families. I'm just wondering why that might be.

Posted

Um, no time?  Too depressing?  Too many different needs and overwhelming situations when I'm already dealing with my own?  Bandwagon approaches to care where maybe my approach is different?  

 

I think it can go different directions, like if the goal is to be informational or to be more sort of coffee klatch.  

 

No childcare would be another.  They might themselves also have some SN.  

 

I think a meeting has value even with a few people.  All you can do is try things and see.  I suppose you could poll and see what people are interested in.  They might not want to talk SN.  I mean, I already think about that enough.  If I get time away, I want to go do something ELSE, mercy.  I went to a lovely party this Christmas where we made beauty products (lip balm, hand cream, etc.), got chair massages, and learned about essential oils.  That was fun, and it was about us.

 

But, you know, maybe if your need is to talk SN, maybe hang here?  Just depends on what your needs are.  I just would doubt I'd meet anybody locally who would really be able to speak to my specific situation.  It's just too nuanced.  When I hang here, I connect with people who are dealing with the same problems.

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Posted

I would love to join such a group, but haven't.

 

Reasons, in no particular order:

Too far to drive

No child care available

Too blooming exhausted by the evening meeting time.

 

But I agree it's a great idea!

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Posted

Childcare

Different types of special needs

 

For example a friend with a child on the spectrum in public school goes to support sessions on IEPs and autism support for teens. Another friend goes to support for ADHD dealing with medication as well as on IEP.

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Posted

I tried but they were so depressing. Who wants to sit around and hear what the kids will "never" do.  I wanted a positive group that gave each other strength.  That showed how much our children's gifts give us.  Instead when I wanted a group all I found was a bring you down and go cry/ you should leave here very depressed groups.  

 

I don't have any desire to join a group now.  

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Posted

Yes, I go to one, and I like it.

 

Here are reasons people don't go, though.

 

It can be hard for some people to deal with the parents of newly-diagnosed children. I think it can just take them back to that time in a bad way.

 

Some people need to prioritize more "girls night out" type stuff, for some people it is really a better choice.

 

For me a big reason I go is to talk about sibling issues. Also my kids (though just my younger kids now) go in for childcare together in a small group, and there is a little girl sibling one year younger than my daughter. I think it is a nice opportunity for my daughter.

 

Another mom I know feels more like -- her other kids have enough of a focus or enough opportunity etc, and she thinks it is better to take her daughter to play soccer and have that opportunity for things not to "revolve around her brother.". That makes sense to me, too, but our balance is different and I do think it is good for my daughter. She does like to go, too.

 

Anyway -- I do like mine.

 

Even if yours starts small, I think it sounds very worthwhile.

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Posted

Thanks for your thoughts. I want it to be a mix of sharing our struggles and pain, but also for uplifting and encouraging one another. I want us to have some fun meetings, where we we just hang out like regular people. I also want my other children to meet other kids who have special needs siblings. I want them to know that they're not the only ones who are on this journey. Also, I feel very alone around most special needs families myself. My daughter is severely mentally insufficient with significant developmental delays. She is also visually impaired and has "autistic tendencies." It's quite a unique diagnosis combination. She is very cognitively-impaired and has extremely limited communication. Most families I know have children who can carry on at least a simple conversation and can even read. I spent all of January in a depressive state over things, and then I decided to be proactive and do something about it. I'd love to hear more thoughts about what kinds of meetings and activities you would like to see in a group. Thank you.

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Posted (edited)

Freeindeed, have you checked into PROMPT for speech therapy for her?  And are you exercising?  I think it's very important for us to take care of ourselves.  For me, the exercise is a good release.  Then I hit the steam room (at our Y they have one), and when I come out it's like OH, WHAT WERE YOU WORRIED ABOUT?   :lol:   I'm just saying, for me, sitting around talking about it wouldn't change anything.  I put my energy into better therapy and ways to take care of myself.  

 

You know what might be fun is a picnic?  Like just kind of one time, focused on the fun...  Maybe open it up to the community...  That would meet a lot of your parameters.  Have you connected to an ASD support group in your area?  Do you have any autism schools in your area?  We have a fabulous autism charter school near us, and we've been able to connect with them for some services, even though we aren't taking classes.  They have holiday programs and just the atmosphere when I walk in the door is supportive.  They'll just listen and get it.

 

Edited by OhElizabeth
Posted

Are you interested in a group just for church members, or are you interested in including anyone?

 

I was just thinking that half the battle might be getting word out about your group to all those who might be interested. For example, I'd ask local OTs, speech therapists, ABA providers, pediatricians, etc if you could post notices in their waiting rooms. Suggest they could mention your group to their clients. Maybe send information to local schools.

 

I'd love to attend the sort of group you're describing, but if it's just discussed within a certain church I'd probably never know it exists. I also really love the fact that you're thinking about siblings. A way for them to make contact with others who live with challenging siblings is so important, I think, and yet not something I've figured out how to do. The ABA providers say they know of other siblings in our community, but they can't connect people because of privacy concerns. But if you told them about a group, and maybe gave them cards to hand out, maybe they could do it.

 

One last thought... My dd functions at such different levels in different aspects of her life that it's impossible for anyone meeting her to see the whole range at once. She might be one of the kids who makes you feel alone because she can certainly carry on a conversation, she reads, she's funny. But if that's the part of her you see, you're not seeing the part that can't handle a trip to the doctor's office, or the part that rages if small frustrations add up. I can't accurately define her by either her best or her worst moments, they all count, but you might not see them all. And even if she reads and talks and is funny, we're still not sure if she can live independently. So, while we aren't where you are, I expect we could relate to each other in ways we couldn't with parents of nt kids. So I think what you're trying to do is important, and I hope you can make it work.

Posted

There is an informal autism support group which meets weekly at a park build to cater to special needs including wheelchair bound children. It is so that the other siblings can play together like a playdate while the moms chat and keep an eye out on all their kids.

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Posted

I've been to formal support group meetings in the past but at this stage I've moved on to socializing with other parents while our kids do Special Olympics or SN soccer or the various community events put on for SN kids.

 

Once your family gets hooked into the community, you'll start to find other parents who "get it".

 

Special Olympics allows children as young as 5 to train, though only those age 8+ can participate in the competitions. It also has the advantage of being totally free.

 

The American Youth Soccer Organization has their "Very Important Player" division for SN kids.

 

Little League has their "Challenger" division for SN kids. We haven't done this because it conflicts with SO track & field season.

 

United Cerebral Palsy offers basketball and it is open to all SN kids, not just those with CP. We haven't done this either.

 

Many cheerleading programs have a SN team, though the one in our area did not have any early elementary kids the last time I checked. Last year it was 10+ though I should reach out to the organizer again to see if she's had any new interest from younger kids.

Posted

I agree with all of the above possible reasons. We have a small support group at church. I think advertising has been a glitch for us. Part of it is that we want to offer childcare, but right now, we are the only family coming that has children that need childcare (others have teenagers or someone to watch their kids). We don't want to end up with a bunch of kids and no sitter, nor do we want to nix the idea of childcare in the future--we really just need another family or two with young kids willing to commit so that we can hire a sitter, lol!

 

On staying positive--honestly, the tone of the group will be set by who comes, though you can do some things to structure it around something positive. We have our times of venting, but somehow it stays supportive. I guess the venting is usually really venting, not doing a "woe is me" Eyeore routine. Our group tries to feature a resource each week--we might pass around books we find helpful, or we might have a speaker (this ranges from county services to therapeutic riding to an attorney specializing in SN estate planning, trusts, etc.). We also all try to find areas where we have commonalities rather than focusing on the differences. One couple that comes are honorary grandparents to a family with SN, and they come just to be supportive. They do a lot of day-to-day helping with the family, but they really are just interested in learning and sharing, and that keeps things positive too. They are in the trenches but not overwhelmed with it, and just knowing that someone who doesn't "have to" be there comes is really a positive thing.

 

 

Posted

I think you could have a very positive "Write and Rip" sort of venting.  Like at the beginning, hand out paper and people write down their frustrations from the week and rip them up...  That could work.  I really wouldn't want to listen to venting, just me.  But if it's cathartic or if they all need to have a round saying their absolute worst thing while they shoot a nerf gun...

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Posted

I think you could have a very positive "Write and Rip" sort of venting.  Like at the beginning, hand out paper and people write down their frustrations from the week and rip them up...  That could work.  I really wouldn't want to listen to venting, just me.  But if it's cathartic or if they all need to have a round saying their absolute worst thing while they shoot a nerf gun...

 

That's a good idea. I think what helps in our group is that the focus in not on the venting as a feature or the spine of the meeting, but it's simultaneously a safe place for someone to talk about their bad day or week as well. And the sense of humor is a bit cracked. We can laugh about stuff while knowing that if other people said the same thing about our kid, we'd be offended, lol! We can brag on the good stuff and milestones while also shaking our heads in disbelief about the goofy thing that our kids did that week. It's kind of all taken in stride (as our own version of normal) rather than dissected or worried and fretted over. 

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