Support groups for SN parents - where to start?

[lyssbobiss, Command, B613]

So, I have been seeing a therapist and finally opened up about my fears about parenting, and there are many. For those who don't know my story, Babycakes is almost 3.5. He has a speech delay and may or may not have Asperger's. He will be evaluated in a few months. But there are so many days where I feel like I'm just barely surviving. I think I've shut myself off from him emotionally some because he is such a difficult child. To be honest, he just isn't who I thought I would have, you know? I married a lawyer with an IQ so high his parents wouldn't tell him what it was because they were afraid it would screw him up. I am a relatively intelligent person. We never dreamed we would have a kid who was delayed. It's a challenge. I don't know if these issues played a role in the divorce but they certainly didn't help.
So, now I'm tasked with finding a support group and I'm having trouble even knowing where to start. Does anyone have any suggestions for where to start looking? GBCN doesn't have a board for SN parents, but I trust you ladies more anyway.
I may end up deleting. I am absolutely worried about being judged for what I've written, but I also have some reservations about just having these raw feelings out in the open for anyone to read.
Can anyone offer some assistance?

[eclaires]

Lyss, I have a very good friend whose son has Asperger's. He's starting high school this year, so she's had awhile to deal with it. She actually had him pretty young (she's around my age - I'm 31), but she's obviously been there, done that in some ways and might have some ideas for you about where to start.

I'd be happy to put you into contact with her if you'd be interested.

[copzgirl1171]

First of all you know that you are free to be yourself here kitten. No judging from me ever. I can't imagine what you must bs going through but always know you can vent here.

I believe that most childrens hospitals are a fountain of knowledge for outreach and support groups. Maybe start there?

Many, many hugs lyss.

[eclaires]

Also, don't feel guilty and I hope no one will judge you for what you've posted. Parenting is hard, it's as simple as that, and there are so many emotions tied up in being a parent that I can't imagine anyone not having felt something guilt inducing at some point (if not frequently).

[SallyJ]

My daughter has had several delays. I found the special needs board on TB incredibly supportive and a wealth of knowledge. Lots of resources and links to other support groups as well. Your feelings are completely normal based on my interaction with other moms of SN children.

[caden]

Oh Lyss. I'm so sorry to hear you're going through this. Major ((((hugs)))) and prayers babycakes is perfectly fine. My kids don't talk (they're almost 2) and are in speech therapy. I have no idea if they have any SNs. I have my concerns about 1 of them, but I just don't know at this point. Anyway, does your city or county have an Early Intervention type program? If so I would call them because at least for my county, they seem to know everything about resources available to parents and kids. they might even have their own support group for parents (mine does). I'm always up for bitching about how hard parenting is, so feel free to let it all hang out via PM.

[lyssbobiss, Command, B613]

Thanks, ladies. Eclaires I may take you up on this! I'm having a really difficult time just coming to terms and admitting that I need help on this issue.
I think I will venture to the bump too. Unfortunately the closest children's hospital is almost 100 miles away, but I may call them as well.
I knew I could count on you!

[eclaires]

Just let me know - either here or FB, and I can get you her info and give her a head's up.

[Deleted]

Lyss-
I have a son with speech delays/stuttering/gross motor issues who also has aspergers and sensory issues. Sometimes he's a difficult turd (like tonight when he refused to listen and got into a fist fight with his brother in front of his new teacher (school starts tomorro). He also tested in the 99% on the woodcock johnson test of intelligence.

I've had to pick my battles. he's never going to play the cello. Soccer was a disaster, but he loves swimming and his OT said to encourage swimming because it gives him lots of input.

He is starting public school this year. In addition to the 2 hours of speech therapy a week he's already been getting, he's also going to get "lunch" bunch which should help prevent him from being over sensitized in the cafeteria but also give him a chance to work on how to play with peers, etc.

I'm fully confident that he will be a fully-functioning, if quirky member of society. I do have a lot of guilt about him though. I was sick with pneumonia almost my entire 2nd trimester with him, I delayed putting tubes in until he was 3 even though his ped recommended them at 12 mos, etc.

Speech/gross motor delays don't necessarily mean cognitive delays.

I have a support group, but not an official one. I just seem to have a lot of friends with kids with Aspergers (our developmental pediatrician said it was very common if kids had high educated parents).

[SusanBAnthony]

Haven't read the replies yet, but I am dealing with similar.

Ds is almost 5, and we had our ASD eval yesterday. It was a preliminary eval and he "passed" on to the next level of testing, as in, yup, something is not right with this kid. Yay!, not.

DH and I are both engineers, so I guess I shouldn't be surprised- we are like the perfect example of the genetic aspect of ASD, I guess. Two nerd parents = ASD kid.

Anyway, background on DS- he has had delays from around age 9 months. He has done EI and now SpEd preschool. He is getting OT, PT, and ST. Now starting in the fall he will get social skills classes. All along we have wondered about ASD, and since that wondering hasn't gone away and he is almost 5, we decided to do testing. He is very borderline with that, but whether he gets the official diagnosis or not, the challenging behaviors are still there.

The things that bug me about DS the most are:
1. he chews his nails. ARGHHHH!
2. He hyper focuses on his special interest, electricity stuff, and can only carry on a conversation about that.
3. He has attention issues (whether an ASD diagnosis sticks or not I am sure he will have an ADD one at some point).

Things that make me sad about DS:
1. He has no friends, and he can't "keep up" socially to play with other kids (crying as I type this)
2. How will he ever hold down a job and be a successful adult? He is such an amazing boy in some ways, but his problem areas will make it hard for him to ever have a girlfriend, etc.

No judging from me. I know how hard it is. I find the Bump SN boards extremely helpful, although TBH I haven't been over there since the proboards migration. Something to consider though. I know the ASD clinics at the childrens hospital we go to also have parenting stuff, so that might be a place to check.

[IIOY]

No judgment here at all. We've been through several of the issues raised here with delays and therapy. I did find good information and support on the Bump's SN board. I also googled and found several boards and online support groups that were great with information and resources.

Many hugs to you. I hope you will keep us posted.

[abc123]

I am so sorry you are going through this. It is so difficult. My DD (18m) was diagnosed with mosaic Down syndrome about a year ago and I think that I'm still grieving. Not just for her and her future, but mine too and our family's too. It's not something I ever imagined and it's hard to wrap my mind around. I'm afraid for her, for me, for everything.

I'm telling you this stuff because you are not alone, your feelings are completely normal. If anyone reels you they didn't have a single negative, selfish or jealous feeling after finding out their child has special needs, they are lying, lying to you and/or to themselves.

I&T should help you find support groups and you might also be able to find them when you get your son evaluated. When we went to the geneticist they had a counselor there to meet with us and was available anytime. They also provided us with packets of info for groups; I hope that you will get some of that info when you go the doctor too.

I will be thinking about you. I hope that you find out there is nothing wrong and you can put all of this behind you. If not, you will still have a great life, a different life, but still a happy one. I know hat you don't e-know me, but if you ever want to chat, PM me.

[KateAggie]

Oh, Lyss. I'm so sorry. No judgement from me and I have no doubt that your feelings are totally natural. If somebody wants to judge you, send 'em my way and I'll kick them squarely in the junk.

I am so, so glad you're putting this out there with your therapist. That kind of pain and guilt should never be kept in. I am always here if you need to talk.

[lyssbobiss, Command, B613]

I'm crying, you guys. In a weird way. Like I'm glad I'm not alone and yet I'm sad that I'm not alone too. Thanks. That's all I can even muster right now.

[charminglife]

I have no advice, but I'm really sorry that you're going through this and I think your honesty is admirable. Best of luck moving forward.

[SusanBAnthony]

I don't know if the Aspergers groups would be the same - like you might feel like you're supposed to offer the support to people in worse shape than you rather that receive some support for what is your own struggle with the thing. That's just a caution. Check it out. Who knows.


I am not in any ASD specific groups, but the bump board is not like this at all, fyi. It is all special needs, but ends up being 80-90% ASD in reality.

[IIOY]

Aug 9, 2012 20:16:09 GMT -5 abc123 said:

I'm telling you this stuff because you are not alone, your feelings are completely normal. If anyone reels you they didn't have a single negative, selfish or jealous feeling after finding out their child has special needs, they are lying, lying to you and/or to themselves.

This x 1 billion.

[Deleted]

Ijust want you to know that there is no judging from me. I am so sorry for what you're going through. I hope you can find
The support you need and deserve.

Big hugs.

[NitaX]

No other advice but I just wanted to give you hugs. (((hugs))) You know you are not going to be judged. Parenting is hard work and throw in illness, special needs, and everything else life can throw at you, anyone is bound to feel overwhelmed. It looks like we've got enough people here who can coach you through all of this. Hang in there Lyss. (((hugs)))

[Jermys]

Edith has been in speech therapy since she was 18 months old, and started OT for Sensory Processing Disorder this past March. It's done a world of good for all of us because it's helped her be less frustrated.

She's not always an easy child, either. She is incredibly high energy and she is determined to do things her way. Which is going to make her an amazing adult, but there are times it really sucks to be her parent. My friend has a son who is an adult with Aspergers, and I could ask her for resources if you want? I know she'd be happy to help.

[statlerwaldorf]

DD is hearing impaired. She also has a language delay and some behavioral issues. Her doctor has been putting off a diagnosis because of the hearing impairment, but they are starting to suspect something more is going on. They are very concerned with the way she puts sentences together and some of her comprehension.

It's really fucking hard. I have a hard time judging whether something is even something she can comprehend. I don't want to punish her for doing something she can't understand is wrong. She will be going to a program through the school district for special needs preschoolers. I can't help comparing her to other kids and then I feel really guilty. The not knowing is hard too. I try not to think about the long run. Many kids outgrow delays and even those with permanent disorders might find ways to cope and have a fulfilling life.

I liked the SN board on TB. They were a great support when DD was first diagnosed with her hearing impairment. DD also has two different breathing disorders that she has had since she was a baby. They seem to be very understand and aren't very judgmental.

The autism group out here is very active. They have movies every once in a while at the movie theater that are sensory friendly. The mall set up a special time for kids with autism or sensory disorders to meet with Santa before the mall opened.

You might want to check your local board of MRDD. I've had the opportunity to work with ours on some local stuff and they are very knowledgeable about services, events, and support groups.

[Deleted]

Big hugs and no judging here.

My mom had my nephew (no Aspergers but other developmental issues including severe ADHD) in a "rainbow group" - it was a group of boys roughly the same age with similar issues, and it was basically to help them learn to socialize. But the parents would get coffee or whatever during it and I think it became a de facto support group. Something like that could help.

[Jermys]

Aug 9, 2012 21:24:17 GMT -5 @mrsbecky07 said:

Big hugs and no judging here.

My mom had my nephew (no Aspergers but other developmental issues including severe ADHD) in a "rainbow group" - it was a group of boys roughly the same age with similar issues, and it was basically to help them learn to socialize. But the parents would get coffee or whatever during it and I think it became a de facto support group. Something like that could help.

There's a similar group that meets with E's OT. It looks really cool and the moms all say that it's really helpful to their kids.

[litebright]

Just a sometimes-lurker chiming in that the SN board on TB is a good place to start.

My DD1 has ASD, diagnosed at age three. I've gotten a lot of support and good advice there, and try to give it as freely as I've gotten it.

I really do know how you feel, because I'm still there at times. My DH is a research scientist, I'm a journalist; we both have advanced degrees. For me, the fact that DD1 is a bit cognitively delayed (not to the point of true impairment, she just tested slightly below average IQ during the dx process) has been the hardest part to deal with. When you're above average yourself, and prize intelligence, it's very humbling and sometimes downright devastating to process that your child is delayed.
The social part is easier for me, because I was a bit of an outcast/awkward myself; but it's like all of my qualities (perfectionism to the point of crying at mistakes, not knowing what to say to people, being reluctant to ask for help) got magnified to the point of pathology in DD1. Sometimes I just want to scream, "Why can't you be NORMAL!?!?" even though I know she doesn't do most things deliberately. She looks typical, she can act typical at times, and then there are the things that she just.doesn't.get no matter how hard I try.

You're not alone. You're SO not alone. It's a hard journey and it doesn't just go away one day. Try us over on SN. We're a friendly bunch, and yup, there are a lot of mamas of kids on the spectrum.

I've also had really good luck at finding other parents of kids with SN through DD1's preschool (which is a mix of typical and SN). Almost all of them are wonderful people who get it b/c they're in the same or similar boats, and when you identify yourself as a fellow SN parent, you find a good bit of common ground even when dx's are different.

[StrawberryBlondie]

No advice, but ((HUGS)). Lots of them.

[onomatopoeia]

I just wanted to chime in as a voice of support. I was in your spot with my now 6 yo...speech delay, suspicion of Asperger's, and behavioral challenges that were so, so draining. I felt guilty, I felt responsible, I felt judged, I felt like a bad mother, and at the same time I was so angry that this was the child I was given, while friends and family had kids that just seemed so...easy. We had to put so much energy into him, yet nothing we did was right. So yeah, there's some raw feelings for you.

To make a long story short, what saved my sanity was a good family psychologist, a good developmental psychologist, and I kid you not, lurking on the Bump SN board. There is a poster there (auntie, I think) who is very insightful and has had a lot of experience with ASD. She also runs a lot of other online support groups, I think. If she's still around (it's been a while since I've been there) you might think about paging her.

It gets better, I swear. You start to figure out things that work, behavioral plans that click. That age (3.5) was probably the toughest for us, but at 6 he is finally showing signs of the great kid I knew he was inside. (He does not have Aspergers, but does have some other emotional issues at play). He's smart, he has friends, he enjoys sports. He's not "typical" in many ways, and I get sad about that. But he has a good life ahead of him.

One thing that really helped me when the behavior was tough (and I don't think you said it outright, but I'm assuming his behavior is a challenge) was to remember that kids don't want to be bad. It was my job to advocate for him, to help him, and to try and figure out what the issues were so we could address them. Help did not come easy for us - we had to actively seek it out, almost demand it. But every step I took made me stronger, more informed, and better able to be the parent he needed.

Hope I didn't ramble, and I hope I helped. I'm mostly a lurker here but feel free to pm me or page me if you want. There were a few books that really helped me as well, let me know if you want the titles.

[MrsAxilla]

My heart is breaking for so many posters in this thread. Hugs to all of you, and especially Lyss. You and I have a lot in common, and although we took different paths, I hope for peace and happiness for both of us. {{hugs}}

[summer]

Oh, lyss, I would never judge you. Everything you said and feel is completely normal. I'm so sorry you are hurting.

You can always vent here. And you've got so much good advice and support from others; I'm glad you opened up.

((hugs)) to all of you who shared your struggles and for your honesty.

[Deleted]

Ah...hugs. I remember when you opened up about this a few months ago. My 4 year old has autism (and OCD, SPD, anxiety, and selective mutism). Our diagnosis journey started with a speech delay (which he now has overcome).

If you ever want to PM back and forth, I'm all ears. Just page so I know to check it.

I can relate so much to many of the things you said. I was an A+ student, as was DH, so the possibility of having anything other than a high-achiever never occurred to us. So we have to mourn that. Bottom line is, we don't know what the future holds, and that is stressful and scary. Even among high-functioning adults with autism or Aspergers, the full-time employment rate is ridiculously low, perhaps less than 10%.

So while all four year olds say stuff like "I want to live with you forever..." I think that in our case, that might be the reality.

Though we've been receiving services for over 2 years and we've had the autism diagnosis for over a year, I'm just now starting to make my own mental health a priority. I'm glad that you are thinking about this now. DH and I are in a good place now, but I believe that 95% of the nasty fights in our marriage were really fueled by the frustration of special needs parenting.

Back on The nest, I did go to the SN board a lot. There are great women there.

I haven't read the thread yet, but I'd begin with Autism Speaks and see if the local chapter has a support group. Even if he doesn't technically have diagnosis, he may be somewhere on the spectrum, and I think it's close enough that you can find value from talking to other parents.

Many cities have local independent autism orgs, too. we have TouchPoint (just merged with Lifeskills). And that's who administers our ABA therapy in the home. They have a parent support group and we are finally going to try it next month.

Also, I just found a church we are going to try who actually has a service specifically tailored towards families with autism. I miss church, but it has been a total bust in the past 4 years. DH gets too fidgety and loud, so we spend the whole service in the hall. And putting him in the nursery is just not an option, he cries every day at preschool drop off despite the familiar environment and teachers.

I'll read the thread and see if I have anything else to add. Hang in there. You're not crazy, this shit is fucking hard. And having a "normal-LOOKING" child invites so much judgement. Every time someone complains about some brat in public, I just know that's what people think of us.

I'm here for you! I'm on the board sporadically, so like I said, just PM and page (and I'll give my real email address in a PM if you want).

[Deleted]

Hi Lite-bright! Good to see you!
(I was Bride2BMO)