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Off day

Posted by on Feb. 21, 2017 at 1:36 PM
  • 11 Replies

Ive been chugging along for a while now. Pushing through whatever comes my way and trying to keep myself facing forward, facing new challenges and reaching new accomplishments.

I don't understand how one slight knocks it all down like a house of cards. I didn't realize how precarious it all was. I felt strong and sturdy, had a firm foundation. But someone huffed and puffed and blew it all down. And it wasn't anyone strongly connected to me. It wasn't something significant in my life, but this little tiny instance, a mere 5 second moment that made me question so much.

My family had an adventurous weekend. My husband is not a planner, he HATES that autism means planning things. Especially since anything we plan gets cancelled because Cheyanne ends up sick. He wants to just jump into something when she's well, because who knows how long it'll last. So we went camping this weekend, total last minute. Packed up the car, picked Cheyanne up from school, let her eat at home while showing her things to indicate we were going camping and headed out. And in all honestly Cheyanne actually does pretty well with little prep for things she enjoys and she loves camping. So the weekend was an up and down adventure. Fun times and incredibly not fun times. That's life.

Anyway, last night we went to the autism center we've been going to for almost a year. Its an hour away but I don't know of any support groups any closer and they do wonderful things with the kids while parents have support group, Cheyanne gets to have music therapy at extremely discounted rate, she gets her own buddy the whole time, there's several volunteers highly educated in autism. 

So the center is available every Monday. We try to go every Monday but its hard driving in 5 o clock rush hour. We live in a heavily populated area and the drive there is stressful and often times were wore out just showing up and I struggle to connect in any way because I'm thinking about how I almost got run off the road on the way there (I live in DFW Tx area, ppl are incredibly rude drivers here and we almost got hit by an 18 wheeler on the way to the center last night).

I'm so sorry this is very long winded and babbling like. Its just that we've been going to this place for almost a year now, and I haven't made any friendships with the ppl because they all live in the area and we drive the furthest of any family there. So the other families see each other at other times. They're connecting. They're building friendships and their kids are becoming friends with each other. And I still feel like an outsider because I can't drive an hour every day to see these ppl. And I can't seem to find anybody in my gigantic flipping city with a child with autism who I could just meet one day for coffee when one of us is having a bad day. I'm seeing these families getting that and I'm becoming very jealous of it.

So back to the beginning I guess. The slight. The stupid insignificant slight. In the parent support group I whispered to the family beside me a supplement they could try for their son while a family on the other side of the room was talking. The group has gotten big, many families in a small room and one person talking at a time ....... barely half the ppl get to talk at each meeting anymore. Everyone scatters right after, I have ZERO ppl's contact info and I had no idea if I'd get a chance to talk or if I'd remember the supplement when I did talk, so I just tried to quickly give them the info. A woman then says out loud, I'm SORRY but we don't need to be having more than one conversation. I can't pay attention to what the person is saying. I said sorry, felt myself turn bright red, and sat there staring the wall the rest of the time. Several people got emotional and were crying as they were talking and I just felt completely numb. The family I was sitting next to have been the only people I've remotely connected with. The woman who made the comment started going to the center the same week I did last year and she's already become a board member, helping run things etc because she LIVES THERE. She can be at the center whenever the heck she wants because she lives down the street! And I think she's made I don't contibute more. Well I'm sorry I can't be there at the drop of a hat. I've cried over the fact that I could help run the bake sale booth at the farmer's market last year. I couldn't even donate baked goods and I love to bake because I wasn't driving 2 hours to deliver some cookies. I give more money than is asked of me when I come but that's about all I can do. And I may just be paranoid but she kept trying to lock eyes with me during the meeting and I just wanted to stand up and leave. I'm sorry if I was rude but I saw no other opportunity. They are starting to run the place in such an organized fashion that every single night its go around the room and tell us one thing. I can't get in touch with my feelings that way.

Jeez, I wrote a book. And I haven't even begun to scratch the surface of my feelings. I desperately feel like there's something missing in my life. I'm thinking I should start my own support group. If you think I'm nuts please don't comment. I don't even know why I'm sharing this. I just feel in a really weird place right now.

by on Feb. 21, 2017 at 1:36 PM
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Replies (1-10):
MamaLauri
by Silver Member on Feb. 21, 2017 at 4:46 PM

Super hugs. It is good to vent. If she is a board member you might write her an email to explain yourself. Others are feeling the same way.

You can start your own support group while attending this one. I started my own Sharing Care Network and became life long friends with most of the families. Each family had kids with learning challenges but we went beyond that. We shared child, elder, and pet care and so much more (vacationing, group baking for the holidays, group buying of pasture raised meats).

Bobcatridge
by Carol on Feb. 21, 2017 at 5:14 PM

Wow.  I would have been upset too. It doesn't sound like that group is giving you the support you need.  How does Cheyanne do with music therapy?  Is the therapy that Cheyanne gets worth the total non-support and bad feelings you get?  Is there someway to break the parent support group into smaller interest based groups so everyone gets more support? 

When I read your post I had several reactions: First, if the support group isn't being supportive to you then they are not the right group for you.  My daughter was in a 4H group last year - she had been in a smaller group previous years but we switched because we thought the bigger group would give her more social opportunities.  The general meetings were run like a military operation - if you were caught talking or your cell phone out you were fined - parents included.  My daughter (14 yrs old) and I would carefully position ourselves to not be seen by the fine assigning person who wielded a mallet (mallet girl) and then we would pass notes to each other.  After a year, we realized neither of us had met or became friends with anyone at the general meetings. Needless to say we switched back to the smaller less organized 4H group. 

Second, the going around the room and tell us one thing sounds like an AA meeting.  I don't know but that is not the kind of support group I would want - just a gut response. I understand feeling out of place and wanting support so bad. Most of the time I have not had that support. It has only been the last few months that I have found a little support group (2 mothers with autistic sons and 2 mothers with austic daughters - kids are aged 15 to 21). We met through a bigger support group and formed our own smaller group. We meet once or twice a month for coffee and talk about what therapists our kids are seeing, the activities available for austistic teens/young adults. So my daughter is 15 - how could it have taken this long to find the support group?  I think of all those years when I felt like such an outsider, when I would go to a school event and the other parents wouldn't speak to me and would actually move away from me because my kid had problems, when I could find absolutely no other parents who were dealing with what I was, when I would watch my daughter come out of school so sad and upset every day. 

You are right though sometimes it is some insignificant slight that cause the whole thing to topple.  Sometimes it is some small thing not even related to our austitic struggle that can make me feel bad and alone. I feel for you.  Hugs.






ineedcoffeemom
by Brittaney on Feb. 21, 2017 at 6:11 PM

I'm not sure if others feel the same way just because they can connect at other times than there. So this is kind of a come together and share something from the week. 

I'm looking into renting a meeting room at my local library to start a bi-weekly support group and see what happens from there. That's so awesome you have such a strong support system through your group.

Quoting MamaLauri:

Super hugs. It is good to vent. If she is a board member you might write her an email to explain yourself. Others are feeling the same way.

You can start your own support group while attending this one. I started my own Sharing Care Network and became life long friends with most of the families. Each family had kids with learning challenges but we went beyond that. We shared child, elder, and pet care and so much more (vacationing, group baking for the holidays, group buying of pasture raised meats).


ineedcoffeemom
by Brittaney on Feb. 21, 2017 at 6:17 PM

My daughter loves the services they offer there. She's so excited when we show up and she runs right in and is completely at home there. They've made the place amazing for the kids, its just not quite right for the parents. And every other Monday you can do parent drop off where we can leave her and me and my husband can go have dinner by ourselves, so that is very nice. Its just the other 2 Mondays that have become total downers. 

When the group was smaller we each had time to talk and discuss things but since its started growing they want to keep everyone together and it just doesn't work anymore. I'm thinking about asking if we could split into 2 groups except one monday a month an actual licensed counselor facilitates the group so I know they'd want to keep everyone together for that. And the center is still real small in that it doesn't have its own building, its run out of a church and I don't know how many rooms they have available to use. 

Thanks for reading my crazy long post :/

Quoting Bobcatridge:

Wow.  I would have been upset too. It doesn't sound like that group is giving you the support you need.  How does Cheyanne do with music therapy?  Is the therapy that Cheyanne gets worth the total non-support and bad feelings you get?  Is there someway to break the parent support group into smaller interest based groups so everyone gets more support? 

When I read your post I had several reactions: First, if the support group isn't being supportive to you then they are not the right group for you.  My daughter was in a 4H group last year - she had been in a smaller group previous years but we switched because we thought the bigger group would give her more social opportunities.  The general meetings were run like a military operation - if you were caught talking or your cell phone out you were fined - parents included.  My daughter (14 yrs old) and I would carefully position ourselves to not be seen by the fine assigning person who wielded a mallet (mallet girl) and then we would pass notes to each other.  After a year, we realized neither of us had met or became friends with anyone at the general meetings. Needless to say we switched back to the smaller less organized 4H group. 

Second, the going around the room and tell us one thing sounds like an AA meeting.  I don't know but that is not the kind of support group I would want - just a gut response. I understand feeling out of place and wanting support so bad. Most of the time I have not had that support. It has only been the last few months that I have found a little support group (2 mothers with autistic sons and 2 mothers with austic daughters - kids are aged 15 to 21). We met through a bigger support group and formed our own smaller group. We meet once or twice a month for coffee and talk about what therapists our kids are seeing, the activities available for austistic teens/young adults. So my daughter is 15 - how could it have taken this long to find the support group?  I think of all those years when I felt like such an outsider, when I would go to a school event and the other parents wouldn't speak to me and would actually move away from me because my kid had problems, when I could find absolutely no other parents who were dealing with what I was, when I would watch my daughter come out of school so sad and upset every day. 

You are right though sometimes it is some insignificant slight that cause the whole thing to topple.  Sometimes it is some small thing not even related to our austitic struggle that can make me feel bad and alone. I feel for you.  Hugs.







MamaLauri
by Silver Member on Feb. 21, 2017 at 6:36 PM

I think it worked well because we did not limit it to a single subject but had multiple overlapping needs. It was just families who had long term needs who were willing to support others with needs. No one was a cling-on. Recipricating spirit was strong without keeping score. 

If it is only about ASD, people tend to limit their interactions to ASD.

Quoting ineedcoffeemom:

I'm not sure if others feel the same way just because they can connect at other times than there. So this is kind of a come together and share something from the week. 

I'm looking into renting a meeting room at my local library to start a bi-weekly support group and see what happens from there. That's so awesome you have such a strong support system through your group.

Quoting MamaLauri:

Super hugs. It is good to vent. If she is a board member you might write her an email to explain yourself. Others are feeling the same way.

You can start your own support group while attending this one. I started my own Sharing Care Network and became life long friends with most of the families. Each family had kids with learning challenges but we went beyond that. We shared child, elder, and pet care and so much more (vacationing, group baking for the holidays, group buying of pasture raised meats).



Bobcatridge
by Carol on Feb. 21, 2017 at 6:56 PM

Well, at least Cheyanne loves it and that makes it worthwhile.  It sounds like breaking into two groups is worth exploring at least. 

Quoting ineedcoffeemom:

My daughter loves the services they offer there. She's so excited when we show up and she runs right in and is completely at home there. They've made the place amazing for the kids, its just not quite right for the parents. And every other Monday you can do parent drop off where we can leave her and me and my husband can go have dinner by ourselves, so that is very nice. Its just the other 2 Mondays that have become total downers. 

When the group was smaller we each had time to talk and discuss things but since its started growing they want to keep everyone together and it just doesn't work anymore. I'm thinking about asking if we could split into 2 groups except one monday a month an actual licensed counselor facilitates the group so I know they'd want to keep everyone together for that. And the center is still real small in that it doesn't have its own building, its run out of a church and I don't know how many rooms they have available to use. 

Thanks for reading my crazy long post :/

Quoting Bobcatridge:

Wow.  I would have been upset too. It doesn't sound like that group is giving you the support you need.  How does Cheyanne do with music therapy?  Is the therapy that Cheyanne gets worth the total non-support and bad feelings you get?  Is there someway to break the parent support group into smaller interest based groups so everyone gets more support? 

When I read your post I had several reactions: First, if the support group isn't being supportive to you then they are not the right group for you.  My daughter was in a 4H group last year - she had been in a smaller group previous years but we switched because we thought the bigger group would give her more social opportunities.  The general meetings were run like a military operation - if you were caught talking or your cell phone out you were fined - parents included.  My daughter (14 yrs old) and I would carefully position ourselves to not be seen by the fine assigning person who wielded a mallet (mallet girl) and then we would pass notes to each other.  After a year, we realized neither of us had met or became friends with anyone at the general meetings. Needless to say we switched back to the smaller less organized 4H group. 

Second, the going around the room and tell us one thing sounds like an AA meeting.  I don't know but that is not the kind of support group I would want - just a gut response. I understand feeling out of place and wanting support so bad. Most of the time I have not had that support. It has only been the last few months that I have found a little support group (2 mothers with autistic sons and 2 mothers with austic daughters - kids are aged 15 to 21). We met through a bigger support group and formed our own smaller group. We meet once or twice a month for coffee and talk about what therapists our kids are seeing, the activities available for austistic teens/young adults. So my daughter is 15 - how could it have taken this long to find the support group?  I think of all those years when I felt like such an outsider, when I would go to a school event and the other parents wouldn't speak to me and would actually move away from me because my kid had problems, when I could find absolutely no other parents who were dealing with what I was, when I would watch my daughter come out of school so sad and upset every day. 

You are right though sometimes it is some insignificant slight that cause the whole thing to topple.  Sometimes it is some small thing not even related to our austitic struggle that can make me feel bad and alone. I feel for you.  Hugs.








magmommy
by Silver Member on Feb. 21, 2017 at 9:30 PM
I loved that you write a book. I like really getting to know others even if it is online. I went to a moms group in Nash but it was moms of all ages and abilities. There was one other mom who I saw go through the autism testing. She had a hard time coping with kids who were typically developing. Here in miss I found the drs and therapists the kids need but nothing for me. I have this grandiose idea of our church (via me i guessl) offering a support group but as of now we are trying to find a way ti reach out to the sped community. I understand about small things being the last straw. Id be upset and embarrassed. But truly my opinion is she's the rude one. Can y'all continue every other week so you can have hubby time? You need that time. You don't have to be perfect. You already are a super mom ! I wish I was close. I'd come to your support group. :)
MixedCooke
by Group Admin on Feb. 22, 2017 at 2:35 AM

I was just about to say that you should start your own local support group and maybe drop printouts at the various therapy places.  There is also another site that may help you find some local mamas at: http://www.myautismteam.com/ .  I will admit, I have not connected with other Mamas as of yet but Im anti-social in general and find it difficult trusting people, especially having worked at a police department as long as I have.  You can though put your area in, etc. to find some local Moms.

I find it difficult to connect to other Mamas just from my working nights, my schedule makes it difficult for me to go to any support groups, much less even meet up to just vent.  My next issue is then of course that most have autistic sons versus autistic daughters.  Heck your one of the few in our group that has an autistic daughter!  Im not sure what time zone you are in, but you can talk to me if you want.  While we may not have that physical contact to go have lunch or be able to do a playdate, we can at least vent with some understanding of what we are going through with our girls.

K1tten
by Silver Member on Feb. 22, 2017 at 9:58 AM

Starting your own support group in your own area isn't a bad idea. I thought about doing the same thing as I know there are many kids in my small town with children on the spectrum. I was starting to make a flier to print out and put them up at different places all around to hopefully start something. Heck, if just one person answers that's one I didn't have to start with.

rebecca_new_mom
by Gold Member on Feb. 22, 2017 at 10:20 AM

Splitting into two groups or starting your own support group both sound like good ideas. You definitely need at least one mom close to you that you can do things with. I hope you are able to find someone. Hugs!!

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