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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

How can we do a better job for moms raising kids with special needs?

Posted by on Mar. 7, 2014 at 4:05 PM
  • 11 Replies

CM and The Stir would really like to provide complete information and support to moms of special needs kids who come to us looking for help. You all are amazing and help our members so much!

What can we do to be the ultimate place for these moms to go?

Do we need to provide better resources and information?

What kinds of real-life stories would you like to read?

What would we need to do to provide all of the help and support moms need when raising kids with special needs - where you wouldn't feel like they needed to be sent anywhere other than cm and The Stir?‚Äč


Are you willing to share your story or advice? Let us know in the comments!

by on Mar. 7, 2014 at 4:05 PM
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Replies (1-10):
Jenn8604
by Jennifer on Mar. 8, 2014 at 12:18 AM
5 moms liked this
If they come to Cafemom they need to AVOID mom confessions AT ALL COSTS, it is FULL OF AUTISM BASHING JUDGMENTAL women and this and all autism groups need to be private for those who have autism, kids with autism, or maybe a grandkid. Not random nosy people. I haven't seen it in awhile, but I have seen "outsiders" come in and make rude comments about those with autism.
Also the raising special needs kids group is an awesome group for those with kids with other special needs. It too needs to be private. Anyone making a rude comment after "claiming" they have a special needs kid just to get in should automatically be booted. We deal with enough judgmental rude comments and the such IRL, we don't need it here.
I think we should feature an asd person (mom or kid) once a week in here and in the RSNK group the same where everyone can share their triumphs, disappointments, anything they want about themselves or kids and people can ask questions and praise and encourage them.
Make sure everyone knows they can ask any questions and they will be answered the best we can, but first and foremost with those with autism we need to remind everyone who asks not everything that worked for one child will work for another and don't freak out if something didn't work. Your child or you may need a different approach on how to handle each situation.
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ineedcoffeemom
by Brittaney on Mar. 8, 2014 at 12:34 AM
5 moms liked this

Providing some information on taking care of yourself would be really helpful. Alot of parents raising kids with special needs are BURNT OUT. Knowing how to recognize this and how to get help would be very good information for us. I'm suffering with this currently. These ladies have been very very helpful to me. I just think everyone needs to be reminded of how important it is to take care of yourself. You can't help your child if you're falling apart.

TheJerseyGirl
by Michele on Mar. 9, 2014 at 10:23 PM
4 moms liked this
I'm online A LOT.. I'm on Cafemom most of that time , and to be honest, this group is the only group I speak about autism , D's life, and my ups and downs through it all. I have never been around more positive women who are so understanding and supportive. Even if our advice isn't "professional", we're real... We live it and do what we do day in and day out because of love. No expert wants a child to thrive and succeed more than its' mother does.

I'd like to see more resources in here,, but also information about the simple and fun things like great parks or museums accommodating ASD kids,success stories of young autistic adults and any social opportunities in our areas. I'd like all the moms to feel at ease in here and know that there will never be bashing, judgement or pity... We are all here to lift each other up and help with and support what we each do for our children!

I'd love to see a mom or child of the week featured! That's a great idea, Jennifer!
MomOfOneCoolKid
by Gold Member on Mar. 10, 2014 at 12:57 PM
1 mom liked this
You guys are doing it already. Maybe a rating system (like Amazon's) about local providers - ST, OT, PT, ABA, school districts & local schools, doctors, centers, etc etc etc
JTMOM422
by Brenda on Mar. 11, 2014 at 12:36 PM

I think that you do a great job. I remember when I was looking for resources of groups you were the first I found. I love that CM is there for so many different people. 

I would like to see a resource page where mom's can go and see the signs of autism to give them a clue on whether or not to get their child evaluated.

I would also like to see a page where new moms could go to find sites that can help them. Such as Autism speaks

I would like to see real life stories of all special needs. Yes this is an autism group but many of the children in this group have multiple dx and it would be nice reading stories about kids who live with it

I would be willing to share my story. I am still new to the spectrum though.

I would love to have a page for blogging as a group. It could have recipes, poetry pictures

Charizma77
by Carissa on Mar. 14, 2014 at 1:43 PM
4 moms liked this

My first piece of advice would be not to feature negative posts or posts that could turn negative about autism or special needs kids. Anytime something like that is featured it gets ugly. Especially in the Mom Confession group or other big groups.  I would also tell parents of special needs kids to be cautious in those groups. I have felt the sting too many times and I am pretty tough skinned here online and have been in cafemom for 6 years. 

I think positive posts and real life stories are a plus. I love reading about the positive stories.. I feel too many times its the negative stories (abuse, abduction, death) that get noticed and talked about. There are adults on this site that have autism and have a wonderful platform to stand on. 

I love that you can find the autism support groups so easily.. And we are always getting new members. Yay! I always do my best to welcome them.  I love this group! 

I am honest and open about our life and will openly talk about autism.

lasombrs
by Sara on Mar. 15, 2014 at 7:57 AM
1 mom liked this
I answered in mc as well.

I would like to see either a group or forum that lists services, drs, therapists, etc by state.

Provide info and links on how people can get more help with their child.

More groups for other special needs. I agree with someone in cm that the raising special needs group does seem an extension f this group. Which is okay since my son has autism. But my son has a lot of other health issues too. Maybe break them down. Kids with cancer, kids with auto immune/ inflammatory issues, genetic disorders etc

Take away the anon! It allows to many people to be abusive on this site towards special needs mothers, and anyone really, which makes it far from a safe place to be!

The stir is not a place I would ever go for reliable information. They usually get facts wrong which is easily seen in the links they provide. They also write with lots of personal opinion, which can be okay, but not what I look for when searching for information. I read if I am bored and want entertainment. I doubt that will change.

I would be willing to provide information about us or help run a more specialized group.
Rsclutch8605
by on Mar. 17, 2014 at 7:30 PM

I believe that more than anything us parents need support, information on things to do and strategies to handle situations, and information on how to destress and take care of ourselves. We worry so much about our kids, we put everything into them and we never relax and never fully stop! 

jmegee
by Jayme on Mar. 24, 2014 at 3:02 PM

Agree and fell the same way!

Quoting Jenn8604: If they come to Cafemom they need to AVOID mom confessions AT ALL COSTS, it is FULL OF AUTISM BASHING JUDGMENTAL women and this and all autism groups need to be private for those who have autism, kids with autism, or maybe a grandkid. Not random nosy people. I haven't seen it in awhile, but I have seen "outsiders" come in and make rude comments about those with autism. Also the raising special needs kids group is an awesome group for those with kids with other special needs. It too needs to be private. Anyone making a rude comment after "claiming" they have a special needs kid just to get in should automatically be booted. We deal with enough judgmental rude comments and the such IRL, we don't need it here. I think we should feature an asd person (mom or kid) once a week in here and in the RSNK group the same where everyone can share their triumphs, disappointments, anything they want about themselves or kids and people can ask questions and praise and encourage them. Make sure everyone knows they can ask any questions and they will be answered the best we can, but first and foremost with those with autism we need to remind everyone who asks not everything that worked for one child will work for another and don't freak out if something didn't work. Your child or you may need a different approach on how to handle each situation.


MamaLauri
by Bronze Member on Mar. 24, 2014 at 5:48 PM
1 mom liked this

I totally agree uplifting stories and sharing on what works is beneficial and appreciated. But I'm not certain on how you draw the line on censorship. Personal or diversity-group bashing is not allowed in most Cafemom groups (but still does happen in some groups). Beyond that are valid serious topics that have negative aspects where discussions could lead to constructive solutions.

Perhaps there can be a folder for "Downer" Topics (a better name is needed) and another for those judged less than constructive.

I have found this group to be very very supportive. I also belong to Wrong Planet (another autism group), the parents section is usually decent, but the others sections can be brutal. I mostly stay away.

Quoting Charizma77:

My first piece of advice would be not to feature negative posts or posts that could turn negative about autism or special needs kids. Anytime something like that is featured it gets ugly. Especially in the Mom Confession group or other big groups.  I would also tell parents of special needs kids to be cautious in those groups. I have felt the sting too many times and I am pretty tough skinned here online and have been in cafemom for 6 years. 

I think positive posts and real life stories are a plus. I love reading about the positive stories.. I feel too many times its the negative stories (abuse, abduction, death) that get noticed and talked about. There are adults on this site that have autism and have a wonderful platform to stand on. 

I love that you can find the autism support groups so easily.. And we are always getting new members. Yay! I always do my best to welcome them.  I love this group! 

I am honest and open about our life and will openly talk about autism.


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