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General Mental Support for Parents/Caregivers of ASD Kids
Group Discussion Topic Details
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General Mental Support for Parents/Caregivers of ASD Kids
Group Discussion Topic DetailsI got to vent
By KevinLivsDad
08-29-08
Today, I had a super stressful day at work. Started work at 0700 with a presentation to big wigs about a hot topic lately.. They did not even listen.. Crisis meetings all day & the blame game happening at work all day. Get home & it is my parenting day. X wife gives me the usual guilt trip & dump of her poopy life.. Then the coup de grace....
My house is totally ASD kid proof... After the X left I made dinner... I ate quite a bit. I was extremly tired after restless night of tossing & turning due to a.m. presentation anxiety.. Started at 7 as mentioned earlier. I fell asleep I don't even know how I was sitting up & even had a glass of water in my hand. No more than 15-20 mins..... Liv, took a dump in her diaper her 3rd one.. She smeared it all over the sliding glass door her play room, her self etc etc. etc. I was so furious. I got mad at her. I got made at myself. I acutally helt like crying... I had to clean her up. The dog, myself, the room, the halls, etc etc etc. Now the gravity of my 4 y/o little girl smearing her poop all over the place. I really am discouraged to say the least. It makes me want to loose hope. I fuking hate autism. Sorry for the language but, that is how I am feeling.... God I get so scared when I see this behavior. I want her words back, her reasoning, her reciprocation. I did yell at her.... She did not even get upset.. I am so mad at myself for yelling at her. You guys are the only ones I can tell. I don't even feel comfortable telling my P's about this. I just feel my strength that I have been so proud of slipping away
My house is totally ASD kid proof... After the X left I made dinner... I ate quite a bit. I was extremly tired after restless night of tossing & turning due to a.m. presentation anxiety.. Started at 7 as mentioned earlier. I fell asleep I don't even know how I was sitting up & even had a glass of water in my hand. No more than 15-20 mins..... Liv, took a dump in her diaper her 3rd one.. She smeared it all over the sliding glass door her play room, her self etc etc. etc. I was so furious. I got mad at her. I got made at myself. I acutally helt like crying... I had to clean her up. The dog, myself, the room, the halls, etc etc etc. Now the gravity of my 4 y/o little girl smearing her poop all over the place. I really am discouraged to say the least. It makes me want to loose hope. I fuking hate autism. Sorry for the language but, that is how I am feeling.... God I get so scared when I see this behavior. I want her words back, her reasoning, her reciprocation. I did yell at her.... She did not even get upset.. I am so mad at myself for yelling at her. You guys are the only ones I can tell. I don't even feel comfortable telling my P's about this. I just feel my strength that I have been so proud of slipping away
Messages posted for this Topic
812
By Kim Howell
09-25-08
Sorry been away for a bit. I'm in Loogootee - (aka timbuktu - haha!) We are about 45 minutes s.w. of Bloomington. We are between B'ton and Evansville, with no real direct route to get anywhere. How's things going with the "art work"? You've been in my thoughts. . . even though I haven't logged in lately. Let me knwo if you need any new ideas! We have a great Behavioral Clinician and she has tons of different strategies.
Good Luck!
Good Luck!
@Kim
By KevinLivsDad
09-20-08
Hey Kim thanks for the info. BTW, I noticed you are from the 812 region. I was born & raised in Bloomington. Where are you?
Poop
By Kim Howell
09-19-08
Don't be discouraged. I know it sounds easy for me to type (and say) but - believe it or not, many have walked in the shoes you are wearing. I met my husband after we both had been through nasty divorces. He had custody of his 2 boy - the oldest had been diagnosed as ASD. So, as I felt our relationship growing stornger - I knew I would be the primary caregiver, not only for my 2 children, but his 2 as well. They were 6 (mine), 5 (ASD - his), 4 (not yet diagnosed Aspie - his) and mine @ 3 yrs of age. Boy did I ever have my hands full. Prior to getting married I read everything I could on Autism. I bought every book that had been written. I thought I knew what I was getting into (HAHA!!) I didn't even have a clue. Yes, within the first year of marriage, our son began poop painting the walls - and (major yuck!) also began eating it. Talk about horrified!! I didn't know what to do or who to turn to. We contacted a Child Psychologist and made an immediate appt. I was just sure he was going to get ill (e-coli posioning) or something. It took lots of work, but we got through that era. He no longer has any interest in feces. I was so nervous when we began toilet training him (6 - 7 yrs old) because I was afraid it would trigger the poop play. It did not. Hang in there. . .WE all have those moments filled with gilt and feel so overwhelmed that we just don't know how we will make it through another day. There is hope. I am a big fan of social stories. Go to the dollar store in your area and pick up several pocket sized photo albums. One on side write a few lines (she will "get it" as she learns to read) then on the opposite page insert a picture to go with the statement. For instance (as much as you hate to) take a picture of the walls after she has created her art work, take a picture of you cleaning it up, and a picture of the house all clean again. With each picture put a picture of you (upset/ angry, frustrated, and then happy). The first page coudl show a clean house and a smiling dad - the words read, Daddy is happy when the house is clean and Liv is a good girl. Next page, messed up walls, daddy's upset face, word to read, daddy gets upset when Liv makes a mess on the walls. It takes lots of hard work for daddy to get the house clean again. Liv is not showing good behavior when she messes the walls. - okay , I'm getting into wayyy too much detail - if you need help with this, please give me a call. The picture books work great, these kids usually like to see familiar people in stories, and a story about Liv and her good behavior will end up being one of her favorite story books. Good Luck! Kim Howell (812) 709-1832
P.S.
By Motherof4
09-09-08
My Best Friend in Arkansas is writing a book about her experiences with her ASD son. The working title is, "Poop on the Ceiling..." Poop and autism just sort of go together. Rats, huh?
Forgot to mention
By LisaAKAmom
09-02-08
Ever see that movie...Courage Under Fire.
My favorite Part...is where the soldier asks meg ryan...Are you Crying...and She says...I'm not Crying...It's just Stress...I'm relieving Stress.
Aint that the Truth.....And you gotta love that Kleenex Commercial...
Sometimes I feel like just setting up a couch in the middle of No Where...with a big box of Kleenex...
Cause we all just Gotta Let it OUT!!!
Ok, I know i got issues.....but Crying and Laughter...really are some of the best medicines we have.
My favorite Part...is where the soldier asks meg ryan...Are you Crying...and She says...I'm not Crying...It's just Stress...I'm relieving Stress.
Aint that the Truth.....And you gotta love that Kleenex Commercial...
Sometimes I feel like just setting up a couch in the middle of No Where...with a big box of Kleenex...
Cause we all just Gotta Let it OUT!!!
Ok, I know i got issues.....but Crying and Laughter...really are some of the best medicines we have.
It's Ok to Say AUTISM SUCKS!!!!
By LisaAKAmom
09-02-08
We have all had those days and moments...and I dont remember who said it on here...but boy it hit home for me, too. They said...I can handle the Autism...Its all the EXTRAS that go with it...like you job, your x...etc....
But I also wanted to tell you...I had a Really hard time, at this AGE too....Everyone told me...oh my child started talking at age 4...and so 4 was the miracle age for me...and when it came and passed...well it was like a Rock hit me. And I honestly have to say....4/5 were very hard years with richie....and we were living in Japan at the time. On a small AFB...where if my husband would have been Military...they would have sent us back to the states....However, thats another long story for another time. So I had no support...because litterally my son was the severest child over there at the time. And I can remember there were times when I felt like I was in a Prison called autism...All I wanted to do...was take my child to church or out to eat etc...just like my friends with so called normal children do.
Anyways....I'm sharing this with you to let you know....it may not get easier...but somehow....you do get through it....and I have met some really great people...who if it werent for autism...I wouldnt have ever met....and I have also learned...I'm not alone, and sometimes need a support group like this one to remind me of that too.
God Bless...and like I said...Its Ok to Hate Autism and to Say it Sucks.....
We all have our Days....Good and Bad.
Lisa
But I also wanted to tell you...I had a Really hard time, at this AGE too....Everyone told me...oh my child started talking at age 4...and so 4 was the miracle age for me...and when it came and passed...well it was like a Rock hit me. And I honestly have to say....4/5 were very hard years with richie....and we were living in Japan at the time. On a small AFB...where if my husband would have been Military...they would have sent us back to the states....However, thats another long story for another time. So I had no support...because litterally my son was the severest child over there at the time. And I can remember there were times when I felt like I was in a Prison called autism...All I wanted to do...was take my child to church or out to eat etc...just like my friends with so called normal children do.
Anyways....I'm sharing this with you to let you know....it may not get easier...but somehow....you do get through it....and I have met some really great people...who if it werent for autism...I wouldnt have ever met....and I have also learned...I'm not alone, and sometimes need a support group like this one to remind me of that too.
God Bless...and like I said...Its Ok to Hate Autism and to Say it Sucks.....
We all have our Days....Good and Bad.
Lisa
THX
By KevinLivsDad
09-02-08
@ all thx for your emails support & comments. It did help esp knowing there where other Poop Picasso's out there. I am still very mad at Autism lately.. More than usual don't know why.. I think it was her reaching her 4th bday milestone & knowing a 2.5 she was way ahead of where she is now coupled with stress. Things are a bit better for now. day at a time i guess Anyway, thx - KC
Poop (and some other sh*t)
08-31-08
I'm sorry about your day. We all hit those walls... the people who deny ever hitting a wall are not being truthful! You still have that strength, but you are not Superman.
I never thought we would get out of the poop smearing stage. Ian would pick up dog poop in the back yard and smear it all over his body and other things. It was horrendous. We worked so hard to pick up after the dog, but he would find that lone pile and go to town! Ian is 7 now, and that stage is a distant memory. Let's hope it will be that way with Liv, too. Ian wasn't poop potty trained until he was close to 6 years old.
I fucking hate Autism too. It is very different than hating your child, for those who think hating Autism is a bad thing.
If you feel like crying... CRY! Pam
p.s. It stinks that the big whigs didn't listen. I'm sure you would have handled yesterday differently had your work day been better.
I never thought we would get out of the poop smearing stage. Ian would pick up dog poop in the back yard and smear it all over his body and other things. It was horrendous. We worked so hard to pick up after the dog, but he would find that lone pile and go to town! Ian is 7 now, and that stage is a distant memory. Let's hope it will be that way with Liv, too. Ian wasn't poop potty trained until he was close to 6 years old.
I fucking hate Autism too. It is very different than hating your child, for those who think hating Autism is a bad thing.
If you feel like crying... CRY! Pam
p.s. It stinks that the big whigs didn't listen. I'm sure you would have handled yesterday differently had your work day been better.
vent
By frogfoot1969
08-30-08
We all have our moments of weakness. Don't be so hard on yourself, you are doing the best you can. A lot of kids do the pooh painting. Hopefully it will be a one time thing but if she continues to do it you will need to put her in pj's that have no access to her diaper like an eariler post said. You know you can always vent to us!!!
Ah the memories...
By carmel66
08-30-08
I remember back to my son at 4 or so. the waking in the middle of the night for HOURS and then conking back out right aroung when it was time for me to get up. Geez - I thought I'd lose my mind. He was smaller and weaker than Liv probably is - so he'd lay in our bed and GIGGLE and WiGGLE. Sounds cute? it wasn't. My DH would sleep and I couldn't. This would be after it took a LIFETIME for him to fall asleep at night. So I understand that fine line of total insanity you are walking. It can get better, it normally does - but you have to get through the rough time first. I agree it is a tactile thing - my son never poop smeared because he is tacticle defensive and we'd probably have a party if he agreed to get something messy on his hands. But my son speaks and laughs and "messes with me" and tells me what he's thinking and laughs (appropriately). So it can happen. Hang tough buddy.
Nanny
By 4muskateers
08-30-08
sweetie is there any way you can hire a nanny in the afternoons to give you a chance to sleep? or maybe hire someone from midnight to 6 am to give you that much needed sleep...I know when Julian was smaller and we didn't know we could heal and recover him, we took shifts, because he wouldn't go to sleep until 3 -4 in the am...I slept first then was up at 12pm and dad would sleep till time to go to work...with you doing this alone it is very hard on you both...but you need to take care of you too...I do know that C.A.R.D. is in the Sacramento area, maybe they can can help by giving you a list of their ABA people who might want a few extra hours of work...just a thought to help you sleep...Blessings your way ~Diana~
Sometimes people don't understand
By Motherof4
08-30-08
Once, back when Daniel was having 3-6 hour long tantrums, and my husband was not yet diagnosed with his illness, my sister visited me. Seeing my anxiety and distress, she looked at me, and with great sympathy said, "You know, Emily, life can be wonderful." "I know, hon," I said, "but sometimes it sucks."
I understand!
By Motherof4
08-29-08
You are human. You had a really bad, stressful day, and not enough sleep. You are not whining, you're really tired, discouraged, and you NEED some empathy. Oh, I've been there. Being female, usually I just have a good cry. So's you know, falling apart under extreme caretaking stress is normal from time to time. Crying might help. Really. Also, I'm proud of you that it took that MUCH stress for you to yell at Liv. That's really good.
The poop-smearing issue is usually a sensory need coming out. If it's smell, put some really stinky cheese in a jar and let her smell it as often as she wants. Make sure you have a lid for the jar, so you don't have to smell it, too. If the sensory need is tactile, try some Play-Dough or cornstarch and water in a bowl. If you do the cornstarch thing, dump it in the yard, not down the drain when she's done. It's a wonderful pipe-stopper. Ask me how I know.
Now, for you. Seriously, screaming into a pillow might help. Your parents might be able to babysit for a while so you can nap? Maybe? Hang in there. If I lived closer, I'd babysit. Cut yourself some slack. You're only human.
The poop-smearing issue is usually a sensory need coming out. If it's smell, put some really stinky cheese in a jar and let her smell it as often as she wants. Make sure you have a lid for the jar, so you don't have to smell it, too. If the sensory need is tactile, try some Play-Dough or cornstarch and water in a bowl. If you do the cornstarch thing, dump it in the yard, not down the drain when she's done. It's a wonderful pipe-stopper. Ask me how I know.
Now, for you. Seriously, screaming into a pillow might help. Your parents might be able to babysit for a while so you can nap? Maybe? Hang in there. If I lived closer, I'd babysit. Cut yourself some slack. You're only human.
last night did not get better
By KevinLivsDad
08-29-08
Liv ended up falling asleep around 8:45. I used that time to clean up the mess until 11 ish. I did not fall asleep until a little after 12. And Liv got up around 3am & was up until 6:30.. So in the last 48 hours I have probably had at most 6 hours of sleep. I feel like I am whinning which is not who I am.. But, I have got to let it out.. All this is taking a huge toll on me.
Smearing
By AWETISM
08-29-08
as I am sitting here reading this the tears for you are streaming down my face. I so wish I had the words to write to you. My son use to do this and I too got mad at myself for the way I would react at times. I can tell you what I did for Sammy and only hopes it may help you some. I took footed P.J's and put them on backwards. For summer I would go to a person that sews and have them made in cotton and do the same. This helped alot he would not leave his chlotes on at this age. Thank you for venting and being open with your life . Quincy


