Having trouble fitting in with other moms!

[Stephanie2]

I think I have finally come to accept and realize that I have NOTHING in common with moms who have typical children. Actually, I don't think I have anything in common with ANYONE anymore! How can anyone understand what it is like to hold down your raging child so that you can give him ativan so that the family can survive the rest of the day? How can anyone understand what it is like to administer supplements/meds 5-7 times a day, even while the kid is asleep (we give LDN after 9pm and B12 shot while asleep, sometimes even sneak in some probiotics if we didn't have enough time to space them out from abx during the evening). How can anyone understand what it is like to sit at a birthday party and watch your child for signs that a rage is on it's way, and when the signs do sneak up you hide in the corner crushing and mixing meds like a crack addict? How do I converse with someone who has nothing else to think about besides getting to the mall in time b/c Macy's is having this holiday sale, and she is going to drag her 2 and 6 year old boys there while she shops (unheard of for me, they would have to be heavily, and I mean heavily medicated for me to bring them both anywhere, let alone shopping). And how about those damn facebook posts about mommy friends who are meeting up to scrapbook or run a marathon or just got a great new job?? Or the couples who can actually go on vacation without their kids and be alone with each other! Or the soccor games, or the ballet lessons, the room moms, the bake sale, the halloween costumes and the list just goes on and on.

 

It's not that I don't want my friends to have these things, it's just that I have NOTHING to talk about besides my day-to-day survival tactics, the latest med that is working, but now it's not b/c they have clostridia, but soon it will get better and we will be back in the game, yada yada yada. I think I have tried for far too long to "fit in" with these moms that I used to "fit in" with. But the truth is that I just DON'T!

 

Even my own family thinks we are crazy and that we have created these problems. We hardly ever see family anymore b/c it is so darn hard to leave the house with these kids. They don't understand what is wrong with us. I think they think we are just too weak for parenthood or something, and that we have no idea what we are doing. And I'll be honest, I just can't bare to watch my neices and nephew thriving and wonder what the heck went wrong in my house?? They have the same genes, yet...

 

Just venting. I'm sure many of you can relate and I'm sure some of you can't (if you only have one pandas kid or if your bout with pandas was shor-lived). My boys have had issues that made them look autistic, so I think we may have more problems than most here, but pandas has, by far, been the most difficult to live with. And we have been battling this with ds5 for over 4 years now, and for over a year with ds2. I'm just feeling more and more worn out and isolated I guess...

 

Kind of like the kid sitting alone in the lunchroom, watching everyone else having fun!!

[thereishope]

When my son was sick, I probably didn't socialize at all with other moms. Mix of depression, shock, exhaustion, and having to be by my son. My son wouldn't do playdates or play outside when sick due to OCD, rages,sensory, etc. I did volunteer at the school, but I felt emotionless when there. Like an out of body experience where I was suppose to pretend everything was fine and play PTA mom.

 

Now that my child is doing well, I am more comforatble in child/parent scenarios, but I feel I have a hard time carrying conversations. I find myself deeper in my thoughts, even when around others. I've gotten better, but I'm just a different person now.

Edited September 14, 2010 by Vickie

[peglem]

Aww, Stephanie. We understand and love you. I think its been at least 10 years since I had a friend outside of cyberspace. My whole world, my family's whole world has been wrapped around our ill child. Well, except my husband and children have outside friendships...okay, maybe just me. But, I do get a break to go grocery shopping every once in a while. Honestly, I don't know what there even is out there in the world to do for fun anymore.

[Stephanie2]

Aww, Stephanie. We understand and love you. I think its been at least 10 years since I had a friend outside of cyberspace. My whole world, my family's whole world has been wrapped around our ill child. Well, except my husband and children have outside friendships...okay, maybe just me. But, I do get a break to go grocery shopping every once in a while. Honestly, I don't know what there even is out there in the world to do for fun anymore.

 

Peg, don't you have any friend's who's children also have autism? There has to be a way we can have friends!!

 

Actually, I have two friends who each have a boy with autism the same age as my 5yo, but their kids are on the mild end and don't have pandas. They still have lives, they can bring their kids anywhere and everywhere...

[philamom]

Steph- I feel for you! Wouldn't be nice if we could all rotate our kids to one another for some mommy time. I wouldn't feel so bad if my kid was tormenting y'all! I also think I might be dealing with c-diff again. It's been a real tough week and poops are smooshy & smelly.

 

Vickie- I know that out of body experience all too well!

 

Peglem- my heart really goes out to you!! and there's not even the good magazines at the end of the aisle!

Edited September 14, 2010 by philamom

[Stephanie2]

 

Peglem- my heart really goes out to you!! and there's not even the good magazines at the end of the aisle!

 

I don't even have anything in common with magazines!!

 

I hate the parenting magazines (BTDT, got anything on rages??), and all the Good Housekeeping ones, please, who has time to organize, bake, diet, buy sexy underwear for their husbands!! LOL! I just sit there and dream about my old normal life and then close the magazine and go back to reality...

[Stephanie2]

I'm having a serious pity party tonight, maybe I DO have pandas and the darn amox is not cutting it!

[philamom]

 

Peglem- my heart really goes out to you!! and there's not even the good magazines at the end of the aisle!

 

I don't even have anything in common with magazines!!

 

I hate the parenting magazines (BTDT, got anything on rages??), and all the Good Housekeeping ones, please, who has time to organize, bake, diet, buy sexy underwear for their husbands!! LOL! I just sit there and dream about my old normal life and then close the magazine and go back to reality...

Maybe I should have added an LOL, just trying to add a little a sense of humor...but i'm even to tired to do it correctly. Yeah, I agree, I doubt any of us have anything in common with the mags. I keep receiving my subscriptions to parenting magazines that are piling up in the corner...like who has Family Fun anymore. I was thinking more in the lines of checking out "Mc Dreamy" to go with my fantasy of being on a stranded island. Can I join you in the pity party?

Edited September 14, 2010 by philamom

[peglem]

Aww, Stephanie. We understand and love you. I think its been at least 10 years since I had a friend outside of cyberspace. My whole world, my family's whole world has been wrapped around our ill child. Well, except my husband and children have outside friendships...okay, maybe just me. But, I do get a break to go grocery shopping every once in a while. Honestly, I don't know what there even is out there in the world to do for fun anymore.

 

Peg, don't you have any friend's who's children also have autism? There has to be a way we can have friends!!

 

Actually, I have two friends who each have a boy with autism the same age as my 5yo, but their kids are on the mild end and don't have pandas. They still have lives, they can bring their kids anywhere and everywhere...

My friends w/ autistic kids are in cyberspace, and I know none of them who have a child as "involved" as mine. I've gotten to the point where this is okay...not really whining about it, just the way it is. My life is just different than most. And the great thing about cyberfriends- I don't have to dress up to go out with them, they don't notice when I haven't had a chance to shower. I don't have to find somebody to watch my child while we do something together. It would be nice to get away once in awhile to talk and think about something besides autism/PANDAS...but after 16 years, what else is there? (Just joking- there's grocery shopping!)

[forjpj]

Vent on!!! Totally get where you are coming from!!

[EmersonAilidh]

Try fitting in with other kids, hahaha.

I posted a FaceBook status today going "Tourette's Uncovered comes on at eight o' clock on Discovery Health Channel tonight!" for some reason expecting everyone, or at least someone, to be excited to me. It was only when I realized that the only responses I was receiving were all about Tourette's Guy that I remembered "Oh yeah. No one else cares", hahah. Not in a bad way.

Or having people accuse me of having an eating disorder because I always say "I'm not hungry" instead of opening Pandora's box with something like "I can't eat bread.", because I've learned better than to expect anyone to even know what gluten is by now, hahah.

This week everyone is concerned with homecoming court being announced, & I'm just concerned with staying awake in class (which I royally failed at for all three classes I went to today). My friend called me to tell her about her day the other day, & all I had to say about mine was "Cure Unknown finally came in the mail!!!" while jumping up in down with the book in my hands like a giddy little kid.

I don't think that I've ever posted about my boyfriend?? Hahah. Well anyway. I was at his house on Sunday, laying around, watching movies, & when I tried to get up for something my hip popped. & of course it wasn't just a little, ignorable one.. oh no. It was one of those loud, obnoxious ones that could be heard clearly over the movie & in a split second had sent me from the bed to the floor. So while he stared over the edge of the bed, wondering whether to laugh or offer a helping hand, I knew I had a decision to make. I could start shouting a long chain of expletives & cry like I wanted to... Or I could just yell "HELP! I've fallen & I can't get up!!!" to make light of what my friends just call my "old lady hips". Guess which one I chose?? We P.A.N.D.A.S. kids are "weird" enough. More than anything else, I'm thankful that my defective body hasn't robbed me of the ability to laugh at myself.

 

We might be weird, but we're the best Moms & kids out there. <3

If walking down the hallways alone means not having to put forth more effort into staying awake than I already have to for the sake of conversation, then so be it. We do what we have to do to get by, cyberMoms. & guess who's going to be victorious in the end for it?? For now I am more than happy with all of my understanding friends being Moms on a chatroom. My Mom actually knows some of your names now from me going "Well, EAMom said..." or "Look what Worried Dad posted!". If the ACN forums is as close as I can get to a friend that understands.. I'll take it.

Edited September 14, 2010 by EmersonAilidh

[nevergiveup]

Stephanie, How appropriate ur response and thread, but Emerson truly can be our inspiration, I was recently feeling very disconnected from my closests friends becuz, they will never be us, they will never understand where we have been, but social networks are key to long life and as frustrated as it is to "pretend" to have not gone through this, I have watched my friends with children with cerebral palsy, or severe disabilities and they also receive very little understanding, even with conventional illnesses, if u want to call them that. Spend time with ur friends, have fun, consider it light conversation and a chance to get away for a while from pandas.

Try fitting in with other kids, hahaha.

I posted a FaceBook status today going "Tourette's Uncovered comes on at eight o' clock on Discovery Health Channel tonight!" for some reason expecting everyone, or at least someone, to be excited to me. It was only when I realized that the only responses I was receiving were all about Tourette's Guy that I remembered "Oh yeah. No one else cares", hahah. Not in a bad way.

Or having people accuse me of having an eating disorder because I always say "I'm not hungry" instead of opening Pandora's box with something like "I can't eat bread.", because I've learned better than to expect anyone to even know what gluten is by now, hahah.

This week everyone is concerned with homecoming court being announced, & I'm just concerned with staying awake in class (which I royally failed at for all three classes I went to today). My friend called me to tell her about her day the other day, & all I had to say about mine was "Cure Unknown finally came in the mail!!!" while jumping up in down with the book in my hands like a giddy little kid.

I don't think that I've ever posted about my boyfriend?? Hahah. Well anyway. I was at his house on Sunday, laying around, watching movies, & when I tried to get up for something my hip popped. & of course it wasn't just a little, ignorable one.. oh no. It was one of those loud, obnoxious ones that could be heard clearly over the movie & in a split second had sent me from the bed to the floor. So while he stared over the edge of the bed, wondering whether to laugh or offer a helping hand, I knew I had a decision to make. I could start shouting a long chain of expletives & cry like I wanted to... Or I could just yell "HELP! I've fallen & I can't get up!!!" to make light of what my friends just call my "old lady hips". Guess which one I chose?? We P.A.N.D.A.S. kids are "weird" enough. More than anything else, I'm thankful that my defective body hasn't robbed me of the ability to laugh at myself.

 

We might be weird, but we're the best Moms & kids out there. <3

If walking down the hallways alone means not having to put forth more effort into staying awake than I already have to for the sake of conversation, then so be it. We do what we have to do to get by, cyberMoms. & guess who's going to be victorious in the end for it?? For now I am more than happy with all of my understanding friends being Moms on a chatroom. My Mom actually knows some of your names now from me going "Well, EAMom said..." or "Look what Worried Dad posted!". If the ACN forums is as close as I can get to a friend that understands.. I'll take it.

[Sylvia]

Oh BOY do I relate!

 

I still have civilian friends (civilian = people without highly special needs kids), but I socialize a lot with people with kids like mine. I am lucky that I am in an area with an active organization (FEAT, Families for Early Autism Treatment) and I started my own group, a biomedical discussion group. Between the two of those, I have met literally dozens of families. But I am the instigator/planner, even though my youngest is probably the one with the most severe needs of the families I know. I host dozens of game nights, holiday parties, meetings, etc.

 

It is a comfortable feeling to know that you can chat and have a glass of wine, and no one will bat an eye if one of (or all of) the kids does something nutty. And the kids seem to really feel the acceptance and lack of pressure too, because no kid ever wants to go home, they all seem to have a good time.

 

Lets face it, "the NT's - neurotypicals, are a boring bunch. Now parents like us, we know how to cherish a good time. I savor it, enjoy every minute. I take great pleasure in planning my parties, I especially love music and make special play lists for the occassion. And I DANCE. Heck, I am 45, I don't have to worry about looking cool, all I care about is having fun!

 

So there may be other families in your area that would love to get together. And you can always come over here Halloween party in 6 weeks! Woohooooo!

 

 

I think I have finally come to accept and realize that I have NOTHING in common with moms who have typical children. Actually, I don't think I have anything in common with ANYONE anymore! How can anyone understand what it is like to hold down your raging child so that you can give him ativan so that the family can survive the rest of the day? How can anyone understand what it is like to administer supplements/meds 5-7 times a day, even while the kid is asleep (we give LDN after 9pm and B12 shot while asleep, sometimes even sneak in some probiotics if we didn't have enough time to space them out from abx during the evening). How can anyone understand what it is like to sit at a birthday party and watch your child for signs that a rage is on it's way, and when the signs do sneak up you hide in the corner crushing and mixing meds like a crack addict? How do I converse with someone who has nothing else to think about besides getting to the mall in time b/c Macy's is having this holiday sale, and she is going to drag her 2 and 6 year old boys there while she shops (unheard of for me, they would have to be heavily, and I mean heavily medicated for me to bring them both anywhere, let alone shopping). And how about those damn facebook posts about mommy friends who are meeting up to scrapbook or run a marathon or just got a great new job?? Or the couples who can actually go on vacation without their kids and be alone with each other! Or the soccor games, or the ballet lessons, the room moms, the bake sale, the halloween costumes and the list just goes on and on.

 

It's not that I don't want my friends to have these things, it's just that I have NOTHING to talk about besides my day-to-day survival tactics, the latest med that is working, but now it's not b/c they have clostridia, but soon it will get better and we will be back in the game, yada yada yada. I think I have tried for far too long to "fit in" with these moms that I used to "fit in" with. But the truth is that I just DON'T!

 

Even my own family thinks we are crazy and that we have created these problems. We hardly ever see family anymore b/c it is so darn hard to leave the house with these kids. They don't understand what is wrong with us. I think they think we are just too weak for parenthood or something, and that we have no idea what we are doing. And I'll be honest, I just can't bare to watch my neices and nephew thriving and wonder what the heck went wrong in my house?? They have the same genes, yet...

 

Just venting. I'm sure many of you can relate and I'm sure some of you can't (if you only have one pandas kid or if your bout with pandas was shor-lived). My boys have had issues that made them look autistic, so I think we may have more problems than most here, but pandas has, by far, been the most difficult to live with. And we have been battling this with ds5 for over 4 years now, and for over a year with ds2. I'm just feeling more and more worn out and isolated I guess...

 

Kind of like the kid sitting alone in the lunchroom, watching everyone else having fun!!

[norcalmom]

http://shutupabout.com/index.php?page=shop.product_details&flypage=shop.flypage&product_id=1&category_id=1&manufacturer_id=0&option=com_virtuemart&Itemid=28

 

check out that website. I think someone here posted it. Its called "shut up about your perfect kids" its written by two sisters who both have kids with special needs. One aspergers, one bipolar. Its very funny and sarcastic. They wrote a book too...maybe we should get them some cunningham tests for their kids tho...I see pandas everywhere!

[Topaz1968]

I am sorry you are feeling this way - I know how you feel in a way. I do have friends and my son has friends, but not one really good friend (that lives close to me anyway). It is a lonely feeling when you see all the other kids playing and your child is playing alone or is not part of a group. I think sometimes we over think things and I try to step back now and then and let him be himself around his friends so they can learn his personality and decide on their own how to deal with it. I have told all the parents that he has TS and now may have OCD and/or Pandas. Only one of the parents I spoke with knows what Pandas is and thinks her son may also have it. That is my son's closest friend's mom. So, I am happy about that because she understands. I never would have know if I did not open up to her.

 

I know it must be hard, but be as honest as possible with them and let them know what is going on. Step back for a minute and see what happens. Having this support group here helps and maybe you can find one locally. That is what I am also trying to do.

 

Good luck and I hope things get better for you.