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HELP! At the end of my rope with my sn dd!!!
  • momtomany74
    Posts: 294Member

    I will try to make this as short as possible given the not so simple matter of it all.

    I may have mentioned in other threads but I have a 5 yo special needs dd.

    It started when she was 7 months old and had her first seizure... Nov 2nd 2007. She went in the hospital for overnight observation and they blew it all off as a fluke and two weeks later, she had 75 grand mals in one day and had to be put on a ventilator after which she was in the ICU almost 2 weeks. Heartbreaking to say the least, it always is when they're sweet little babies.

    There were a couple times in her first two years of life we almost lost her and I wasn't about to 'let' that happen. Yeah, yeah, like I had a choice but alas, I couldn't let her go. I wanted my little girl to live. No matter how bad it was I said. Boy, did I not know what I was in for.

    She met most all her developmental milestones in her first four years of
    life, but by age three it was apparent that she was indeed 'special'. Handicap. Not unique, not one of a kind but what the kids back in the day would call 'short yellow school bus special'. After I lost my 'normal' child, life became hell from there. There's just no 'reasoning' with K. on her IQ test, she scored 55. "Mental retardation/cognitive delay.' Call it what you will.

    I am at a point now where I get NO enjoyment out of being her mother, heaven help me! Please try not to judge.. Let me explain a bit about K. She acts sometimes downright nasty. Will strip naked in front of people, masturbate and yes, I don't think it's okay to do with people present! I don't want to see that nor does anyone else!! She had 6 months where she was potty trained. I didn't once need to buy a diaper or pull up, even for bed! Over a year later, she almost never uses the toliet. She goes through more pull-ups than my two ds ages 6 months and 2.5 yrs combined go through in diapers. A 5 year old's shit is goddamned foul. No shit is roses, no matter the age, but the older they get, the more plentiful and foul the shit is. Part of me wonders if she does it out of rebellion?

    She refuses to keep on shoes. I get shit all the time from her busdriver about how she behaves on the bus as she does this on the bu, the shoe thing. My dd is a pain in the ass and would make the Dalai Lama want to kick a kitten so I can see why those not close to her would feel the way they do.

    I can't take her anywhere unless one of my teens or another adult is with me. Just Monday we were at a friend's house in the backyard and my dh was there as well with all of our little one's and my friend's little ones. K just took off, FAST! Wouldn't stop running despite our screams. My dh ran after her but couldn't catch up. She disappeared. My friend had me stay with our little ones and took off on her bike to help dh. K just randomly went into a house and luckily some man saw and knew who they were after. Thankfully the woman in the house was good natured and even laughed but what if that hadn't been the case?

    Her temper...OMG.. When she gets upset, she charges after the 2 yo and has started now on the baby and despite punishments, will repeat the same stuff. We protect the little ones don't think otherwise but she has taken to doing that at school as well.

    The things she does sometimes..so senseless!! She loves to take things and hide them. Things like my breast pump, the remotes for the t.v. If you're working on a project and god forbid have to leave the room, you better hide your supplies up your ass or she'll take them and hide them. One time she kicked over my computer and broke it during a fit and needless to say, I was less than pleased. She finds ways to get to bags of food, dumps it out. Boxes of cereal and stuff like that. I hate feeling like I have to be on guard with her 24/7. If I have the stove on, she'll try to mess with the fire. I mean, there's NO relaxing around this kid!

    During a tantrum once, she ran in the kitchen and took a pot of hotdogs off of the stove and threw it across the kitchen. Today was my breaking point...I was driven to thinking I wanted to just take all of my kids except for her and leave her with dh since we don't have much of a marriage left anyways. She has to be up his ass 24/7. He can't even go shit without her busting in on him saying "Day day (her way of saying daddy). Guess I can't blame her as he clearly loves her and has more patience. But anyways, I made my ds's baby food and made tons of batches and put some in the back of the fridge so she wouldn't get them (she's obsessed with his food, even has to eat some while he's eating his) and I go to the living room to sit down and nurse ds, and the kitchen was quiet. She took the batches I had in the fridge and just mindlessly dumped them all over the place! They say she's cognitively at 18-24 mons of age but none of my kids that I've had that age ever acted THAT bad!

    Here's another example; she SCREAMS merely brusing and washing her hair and has this disgusting ass shirt she wants to wear ALL the time. Once I had her all dressed for the bus and she took her outfit off and hid it and put that fucking shirt I'd like to burn on instead, and I didn't have the truck that day, she missed the bus and school so she was in the house ALL day acting as great as she does..*sarcasm* And her teacher tried she say she does NOT have sensory issues? Ooookkkay.

    One more example the other day was I HAD to take her to the store alone( teens visiting dad, dh was working) with the 2 little guys because there were somethings I needed to pick up and I had to have her on a harness (judge all you want, I only have two hands) and she SCREAMED the whole time and was hysterical. My heart was in my throat and I had chest pains after the whole ordeal.

    She says only a handful of words and her voice is not audible. Sounds like she's talking with a mouthful of marbles despite speech therapy.

    So, is this going to be the rest of my life? If so, I don't see what the purpose is. If anyone can relate and give me some advice, PLEASE help!

  • ChristyJChristyJ
    Posts: 883Member
    Hugs momma, really big hugs.
    Imperfect and proud of it.
  • SalllyWingo
    Posts: 1,572Member
    Holy shit. Your story makes me want to burst into tears. I don't know how you do it, and I don't blame you for being @ the end of your rope. I am sorry. Your situation is the very reason I will never have more babies.

    Love, light & strength to you Momma. You fuckin need it.
  • TranquilTranquil
    Posts: 451Member
    >:D< There is definitely a purpose to your life. ALL your children need you :)
  • AnonUser26
    Posts: 1,144Guest
    Doll, you are not alone. I can give you some advice as a used to work with troubled children. Quite frankly, I don't want to get crucified here for the advice I give you. But if you want it, you can pm me.
  • meandmy243meandmy243
    Posts: 6,356Member
    Have you thought about therapy for yourself... my ds has other special needs and for the longest time i took it out on everyone else and couldnt deal with life idk if it was the hour in the office where i could vent safely or what it was but it helpped alot. my ex is starting to question my parenting and a bunch of stuff with his medical saying im making it up that hes just meant to be small but it starting to make me question myself as a parent again..
    mom of wild children
    going to the chapel 7/5/2014
  • BeachyBeachy
    Posts: 3,938Member
    Hugs! And @finallyfree2bme, I think it would be nice to post suggestions here for other mommies in need, and If anyone gave you shit, WE would tell them the fuck off and they would show what a douche they are.
    I put my dd2 on a leash, I would rather her be safe than worry about what anyone else thinks. Kids run off! What if she got hit by a car or lost? Nope leashes are fine.
    Searching for my lost shaker of salt.
  • boring_nameboring_name
    Posts: 667Member
    @momtomany74 I don't know that I have any specific advice as I don't know your daughter or what all you have tried. 

    If she is mentally retarded with an IQ of 55 is very possible that she doesn't know what she's doing is wrong and even with correction won't remember. Obviously for safety you can not leave her unattended with your younger children. 

    You mentioned a lot of seizures were the base of this disability. Is it possible she is still having minor ones that triggered certain behaviors? (such as the potty training reversal, acting out, etc.)... I knew a child who was having seizures and her parents didn't know. She had times where she just "spaced out" and those were the manifestation of hers. 

    As for on the bus my nephew was in a body harness that didn't allow him to get up, move around or undress (it zipped up the back). There was also a bus aide so the driver wasn't trying to supervise and drive. Maybe a harness would be a good idea in public as well. I know my nephew did need that for a time and as awful as it seemed to have him "tied up" it kept him safe. (He was a runner too). 

    Good luck with it all. I hope you are able to find some strategies that will work with her. 
    B
  • pdxmama
    Posts: 1,470Member
    @finallyfree2bme just tagging you right so you get the above comment love.
  • chaosmomchaosmom
    Posts: 3,846Member
    Hugs mama. It's tough. I don't have any real advice because I barely know what to do with my own child's behavioral issues. It is a thankless job that we have & it isn't for the faint of heart. We are given these special children because we are the best ones to love them & take care of them. You are stronger than you think. I would strongly suggest getting yourself into therapy. You need a safe place to vent your frustrations & anger so you don't take it out on your daughter. Just remember, she didn't ask for this life either but it's what you both were handed. It helped me to really focus on changing my expectations of my son & grieving the loss of a normal life. You do what you have to do to keep everyone safe. If that means putting her in a harness, so be it. I'm not sure of her physical ability, but look into putting something like baby gates up to block her out of certain areas, such as the kitchen. You do what you have to do & fuck what anyone else thinks. You are her mama & you know better than anyone else what she needs. Keep your head up sweetie. Feel free to pm me any time if you just need to talk.
  • CalliopemarieCalliopemarie
    Posts: 4,341Member
    hey. huge hugs. you are overwhelmed and it is completley understandable. does she qualify for disability? if so you might be able to get some type of helper or aide for her. to go to school with her and the store with you or something.
    i am insane!!! mwahahahaha
  • pdxmama
    Posts: 1,470Member
    @momtomany74 I'm so sorry that you are so overwhelmed. I have 2 kids, both have special needs, so I understand that feeling of "fuck, this is not what I signed up for!" I agree with what's been said about trying to get therapy for yourself so that you have an outlet for your frustration, but also wanted to ask if there are any support groups for parents of kids with special needs in your area. They can be a lifesaver! Just having a group of people who really understand what you deal with on a day to day basis is a huge help. Also, do you qualify for any kind of respite or personal care assistance? Sometimes even a couple hours away can mean the difference between feeling like you can keep going another day instead of wanting to walk away from everything. One day at a time, you can get through this. Pm me anytime.
  • momtomany74
    Posts: 294Member
    Thanks for the suggestions and support everyone :)
  • CalliopemarieCalliopemarie
    Posts: 4,341Member
    you're welcome. how are you doing today?
    i am insane!!! mwahahahaha
  • momtomany74
    Posts: 294Member

    Alright I guess.

    She isn't so bad today mostly been just resting. Sometimes her meds are so hard on her and she's exhausted, other times, it's the opposite.

    But it's either the seizures, or the meds. Take your pick.

  • CalliopemarieCalliopemarie
    Posts: 4,341Member
    that sucks.
    i am insane!!! mwahahahaha
  • momtomany74
    Posts: 294Member

    It does. The seizures can cause serious damage but the meds can cause bad side effects. Yes, we've tried different combos over the years but her seizure control has been pretty good on this set (the only time they really act up is if she ges sick or the meds in her system get too low) so I don't want to mess with it.

    She does have good days though. What's strange is she does have some abilities. Like she knows what screwdrivers go to what toys to take them apart, lol.

  • kittenkitty00
    Posts: 403Member
    I myself have sn ds11 it took is a long time to find what worked for him even a 2 year stay in state hospital for anger issues. The harness on bus is great start and if not already a different school trained to handle kids like her. Most of all and i learned this hard way dont take away from other kids because of her like missing their plays and practices due to her outbursts always make sure both parents alternate other children and focus on good things she has done even if ita small like getting used toys that she can take apart just for fun. Good luck and lots of hugs.
  • undercoverbanana
    Posts: 7,743Member
    big, massive hugs. wish i had some sort of constructive advice, but i don't. just a big, massive hug.
    i'm nekkid.
  • mama2tutnkcmama2tutnkc
    Posts: 1,039Member
    OMG. Here I am bitching about catching pee when you are barely surviving. You are a strong mama to cope with that 24/7
    I get it when you say "this is not what I signed up for" I hate myself sometimes for resenting my son, but it happens. Don't feel guilty, this is your place to vent and let it all hang out. I don't have any suggestions that weren't already mentioned but I do have an ear. And a hug!!
    feels like *home* to me