I don't handle stress well and having special needs kids can be very isolating.

[Rose in BC]

I'm just having a tough week. The stress is killing my body (fibromyalgia). Add to that the fact that most people don't understand what we deal with parenting FASD kids and their helpful suggestions are hurtful to me (because their suggestions are things you can do with a regular child but not a FASD kids). The worst part of FASD in my teens is they look normal but aren't. People have unrealistic expectations and then judge (at least that's how I feel) our parenting.

 

It can be very lonely.

 

Some days I feel so forlorn as I ponder my kid's futures.

 

Thanks for hearing my vent.

[Desert Rat]

:grouphug:

[Rosie_0801]

:grouphug:

[Orthodox6]

:grouphug:

 

Yes, "special lives" are draining for everybody involved. Stress never ends, even when things are going well. Not only do my "specials" look normal, but I, too am a "special" and look normal!

 

Here's another :grouphug: for the FM. I've got that, too. It's giving signs of the dragon emerging from remission, so you have my additional prayers regarding that.

 

I hope you can stop feeling that you are being "judged". You are working hard and loving your children, day-in and day-out. Their love for you (and it is there) trumps any and all off-base comments from outsiders.

[Rose in BC]

:grouphug:

 

Yes, "special lives" are draining for everybody involved. Stress never ends, even when things are going well. Not only do my "specials" look normal, but I, too am a "special" and look normal!

 

Here's another :grouphug: for the FM. I've got that, too. It's giving signs of the dragon emerging from remission, so you have my additional prayers regarding that.

 

I hope you can stop feeling that you are being "judged". You are working hard and loving your children, day-in and day-out. Their love for you (and it is there) trumps any and all off-base comments from outsiders.

 

 

Thanks for this...actually I often tell my kids everyone is special needs :). I know this is true for me. I will pray that your flare up settles down. My FM has been in overdrive this week. I feel like I'm 104.

[applethyme]

:grouphug: :grouphug:

[Alexigail]

Hugs. I'm not going through the exact things you are, but special needs kids + autoimmune issues for mom is something I can really relate to. I hope tomorrow is a better day. :)

[Heatherwith4]

:grouphug:

[PollyOR]

:grouphug:

[Twinmom]

I'm having a week like that, too. I can't imagine my special needs kids (who also look normal but aren't!) ever leading normal lives, I can't imagine living through this, I'm so tired. Mainly, I'm tired of dealing with other people's expectations of both my kids and my parenting. Hearing other people's well meaning diagnoses of the problem and how I either caused it or should handle it gets really old. Imagining how to lead a normal life or have normal relationships when my kids can blow up what I build in 30 seconds or less is just daunting.

 

Don't mean to throw more misery around, but just wanted to let you know you are not alone. Try to get some sleep and remember that there are people out there who understand...really, are walking this path with you. More importantly, God is walking this path with us both and loves our hurting kids even more than we do...and He does have the power to make things new every morning!

[LostSurprise]

You're not alone. :grouphug:

[AMJ]

Group hug!

[Orthodox6]

 

 

 

Some days I feel so forlorn as I ponder my kid's futures.

 

 

 

 

This where I was until a few years ago. Now two of my "specials" are young adults and their "future" has arrived (and continues to unfold). Even though they continue to struggle with some things, and some of those struggles are so sad to see, the "future" has turned out to be filled with many, many successes and blessings -- none of which I could have foreseen.

 

May you and yours be equally -- or even more so -- rewarded and happy!

 

O-6

[gardenmom5]

I have a son who has hfasd. I found yoga for me, was really helpful in increasing my ability to be patient with him. my son loved to crawl all over me - and I'd ask me "do you want a grumpy mommy, or a nice mommy?" he'd get off.

 

I think there are people who mean-well in making suggestions, but are clueless. then there are the sanctimonious types - they only deserve to a hard stare, then turn and walk away.

[Rose in BC]

I'm having a week like that, too. I can't imagine my special needs kids (who also look normal but aren't!) ever leading normal lives, I can't imagine living through this, I'm so tired. Mainly, I'm tired of dealing with other people's expectations of both my kids and my parenting. Hearing other people's well meaning diagnoses of the problem and how I either caused it or should handle it gets really old. Imagining how to lead a normal life or have normal relationships when my kids can blow up what I build in 30 seconds or less is just daunting.

 

Don't mean to throw more misery around, but just wanted to let you know you are not alone. Try to get some sleep and remember that there are people out there who understand...really, are walking this path with you. More importantly, God is walking this path with us both and loves our hurting kids even more than we do...and He does have the power to make things new every morning!

 

Thanks for this. It is good to hear from people who really do understand. Some days (weeks, months, years :)) are just hard.

 

:grouphug: to you. FM lives in my body too. It's tough when it flares up. Can you maybe make a list of stress-relieving things you can do for yourself that would help? I sometimes do that -- make an actual list, start at the top and when I get to the bottom, I start all over again. Sometimes it's the only way I remember to take care of myself in the midst of all the stress. You and yours are in my prayers.

 

Thank you for the reminder to write down a strategy list. FM is aweful and i'm sure its completely the result of my stressful life. I wished i had handled the stress better in the early years and maybe I wouldn't have FM. Thank you for your prayers.

 

Hugs. I'm not going through the exact things you are, but special needs kids + autoimmune issues for mom is something I can really relate to. I hope tomorrow is a better day. :)

 

Thank you.

 

 

This where I was until a few years ago. Now two of my "specials" are young adults and their "future" has arrived (and continues to unfold). Even though they continue to struggle with some things, and some of those struggles are so sad to see, the "future" has turned out to be filled with many, many successes and blessings -- none of which I could have foreseen.

 

May you and yours be equally -- or even more so -- rewarded and happy!

 

O-6

 

That's an awesome report. Very encouraing. I'll keep praying for the best outcome.

 

I have a son who has hfasd. I found yoga for me, was really helpful in increasing my ability to be patient with him. my son loved to crawl all over me - and I'd ask me "do you want a grumpy mommy, or a nice mommy?" he'd get off.

 

I think there are people who mean-well in making suggestions, but are clueless. then there are the sanctimonious types - they only deserve to a hard stare, then turn and walk away.

 

For the most part I have well meaning people in my life but they just don't get it so sometimes their well meaningness is hurtful. I do walk every day (try to) but yoga probably would help with patience and fibro. Thanks.

[besroma]

:grouphug:

[Tap]

I am not saying this is your issue...but I wanted to share a personal experience with you.

 

After 300 sesssions of listening in on and participating in dd6's BT/OT and 2 years of her psychiatrist appointments it was dd's pdoc that finally hit home with me and my own stress....and it had nothing...and everything.... to do with dd6. He told me that he suspects that I have PTSD (post traumatic stress disorder) from dealing with dd6. At first I kind of laughed him off. Then I started researching PTSD in caregivers and realized that he was absolutely onto something. I haven't been to a doctor myself, and likely won't just for a diagnosis. But just having that clarity of why I react the way I do sometimes, was life changing.

 

I urge you to research it if you haven't already and see if it fits. I was able to try a few ideas I found online and they have helped some, but honestly just realizing that my body is overreating to small issues made me see how often it happens to me. It helped me see that I am so used to dd6 going from 0-10 on a behavior scale in a matter of minutes, that anytime she even gets to a 3-5, I am already unconsiouisly mentally/physically preparing for a 10. Then I have the physical fatigue and pain from my uneccasary over-reaction.

 

I am getting better at controlling my reaction to her behaviors, but I do still overreact sometimes. Take this exact moment for example. DD6 is having a small tantrum and dh is dealing with it. I am not involved at all. But just hearing the situation unfolding has my heart rate up, my brain flooded with information, and I can feel the adrenaline pumping through my body (I get a very uncomfortable antsy feeling from adrenaline). The issue is already over, dd6 is happy and is running around the house. I am still sitting here feeling sick from a behavior that I didn't even deal with. :0( Now that I understand the roll PTSD has in my life, I am much better at my own self calming and most importantly 'letting go' of her behavior.

 

 

Editted to add clarification

[mamatohaleybug]

I am not saying this is your issue...but I wanted to share a personal experience with you.

 

After 300 sesssions of BT/OT and 2 years of psychiatrist appointments it was dd's pdoc that finally hit home with me and my own stress....and it had nothing...and everything.... to do with dd6. He told me that he suspects that I have PTSD (post traumatic stress disorder) from dealing with dd6. At first I kind of laughed him off. Then I started researching PTSD in caregivers and realized that he was absolutely onto something. I haven't been to a doctor myself, and likely won't just for a diagnosis. But just having that clarity of why I react the way I do sometimes, was life changing.

 

I urge you to research it if you haven't already and see if it fits. I was able to try a few ideas I found online and they have helped some, but honestly just realizing that my body is overreating to small issues made me see how often it happens to me. It helped me see that I am so used to dd6 going from 0-10 on a behavior scale in a matter of minutes, that anytime she even gets to a 3-5, I am already unconsiouisly mentally/physically preparing for a 10. Then I have the physical fatigue and pain from my uneccasary over-reaction.

 

I am getting better at controlling my reaction to her behaviors, but I do still overreact sometimes. Take this exact moment for example. DD6 is having a small tantrum and dh is dealing with it. I am not involved at all. But just hearing the situation unfolding has my heart rate up, my brain flooded with information, and I can feel the adrenaline pumping through my body (I get a very uncomfortable antsy feeling from adrenaline). The issue is already over, dd6 is happy and is running around the house. I am still sitting here feeling sick from a behavior that I didn't even deal with. :0( Now that I understand the roll PTSD has in my life, I am much better at my own self calming and most importantly 'letting go' of her behavior.

 

 

Wow. Thank you for writing that all out. I think this is the case for me, too. I just started seeing a counselor and will explore this with her. Thank you!

 

And to the OP - Hugs!! I understand and feel great compassion for you. It's an exhausting life. Focusing on the small, happy things helps me deal. Also, realizing I don't have to face "the future" today helps, too. Life will unfold one day at a time and it will be okay. You don't have to have all of the answers today. There's great relief for me in holding onto that idea. It's hard not to feel overwhelmed, though.

[Sisyphus]

Aw, I'm sorry. Not fasd, but other special needs here. And they look normal, lol. I am so, so, so sick of hearing what magic curriculum would make my child with severe lds better at math, or how ADHD isn't real, or (insert comment here). I have great kids, and we are making progress, however slow, but some days I just can't take another well meaning comment to do xyz from a parent with nuerotypical kids!!!

 

I find beer helps.

[Tiramisu]

Hugs and love to all of you!

 

I recently heard about the PTSD in parents. I think with sensory kids I have a touch of that. There are people out there dealing with a lot more than I am, I realize, but there's something that happens to you when for a decade or two something is always an issue, when you can't do the normal things of life without interference, etc. There's a chronic expectation that nothing will ever go smoothly and you are always bracing yourself for the next round of trouble. No fun. Maybe a different type of mom would have handled it better.

[Rose in BC]

I am not saying this is your issue...but I wanted to share a personal experience with you.

 

After 300 sesssions of listening in on and participating in dd6's BT/OT and 2 years of her psychiatrist appointments it was dd's pdoc that finally hit home with me and my own stress....and it had nothing...and everything.... to do with dd6. He told me that he suspects that I have PTSD (post traumatic stress disorder) from dealing with dd6. At first I kind of laughed him off. Then I started researching PTSD in caregivers and realized that he was absolutely onto something. I haven't been to a doctor myself, and likely won't just for a diagnosis. But just having that clarity of why I react the way I do sometimes, was life changing.

 

I urge you to research it if you haven't already and see if it fits. I was able to try a few ideas I found online and they have helped some, but honestly just realizing that my body is overreating to small issues made me see how often it happens to me. It helped me see that I am so used to dd6 going from 0-10 on a behavior scale in a matter of minutes, that anytime she even gets to a 3-5, I am already unconsiouisly mentally/physically preparing for a 10. Then I have the physical fatigue and pain from my uneccasary over-reaction.

 

I am getting better at controlling my reaction to her behaviors, but I do still overreact sometimes. Take this exact moment for example. DD6 is having a small tantrum and dh is dealing with it. I am not involved at all. But just hearing the situation unfolding has my heart rate up, my brain flooded with information, and I can feel the adrenaline pumping through my body (I get a very uncomfortable antsy feeling from adrenaline). The issue is already over, dd6 is happy and is running around the house. I am still sitting here feeling sick from a behavior that I didn't even deal with. :0( Now that I understand the roll PTSD has in my life, I am much better at my own self calming and most importantly 'letting go' of her behavior.

 

 

Editted to add clarification

 

 

thank you for this. This could very well describe me. I will investigate.

[Rose in BC]

Aw, I'm sorry. Not fasd, but other special needs here. And they look normal, lol. I am so, so, so sick of hearing what magic curriculum would make my child with severe lds better at math, or how ADHD isn't real, or (insert comment here). I have great kids, and we are making progress, however slow, but some days I just can't take another well meaning comment to do xyz from a parent with nuerotypical kids!!!

 

I find beer helps.

 

 

Ha, ha! I'm waiting for 5 o'clock for my glass of red wine :).

[Twinmom]

Looking into PTSD for my DH and myself...thanks for pointing that out! It is a real possibility here as well. Thankfully, we already have a therapist who has experience in this area, so I know where to start.

[Tap]

Looking into PTSD for my DH and myself...thanks for pointing that out! It is a real possibility here as well. Thankfully, we already have a therapist who has experience in this area, so I know where to start.

 

 

Here is a quick guide that can help you think through the criteria.

 

Take into consideration that it is from an internet web site ( ie may have errors) and they person sponsoring it is selling something, but I like how clearly it outlines the different areas. Most of the website talks about vets so the information isn't about caretakers PTSD, but I like the diagnosic questions.

[Twinmom]

Well according to that, I fit the criteria...with some variations for caregivers. Ugh. That explains a lot.

[Ghee]

I understand how you, and the other posters, feel. I am going to look into PTSD, so thank you for posting that, Tap. I had never considered it before. I have been living, for 15 years, with one form of stress or another in dealing with my family's needs. Sometimes it's horrendous and daunting, other times it's like someone else said - just the knowledge that things rarely go right and the waiting on the other shoe to drop.