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The frustrations of Special Needs parenting - Page 2

post #21 of 42
Quote:
Originally Posted by RiverTam View Post
Yes, and I have lots of times when I wish that we could not be THAT family for just one day and he wouldn't be THAT kid, and then I'm ashamed for wishing it, and ashamed of struggling with it because other people have even more problems then us, and really, DS also has tremendous gifts and I really should be more grateful.
Me, too, on both counts. So many kids who have the type of brain injury dd2 has can't walk or talk or...she's doing so well, comparatively, I feel really guilty for being upset about it all.

I hate that she has to be mentally disabled AND low vision. Isn't one or the other enough? Uggh.
post #22 of 42
I'm tired of having to follow up every darn person involved in DD's care to make sure they are doing their job.

Today I had to take her for a repeat echo because the one a few weeks ago didn't get good views, then a repeat lab work because the one last week someone didn't order correctly and it didn't get run. But it took 25 phone calls to get to the bottom of both of these because each person I talked to dropped the ball in some way as well.

And I'm emotionally shot from trying to keep track of it all and wondering every time a new strange thing comes up if this is a big deal or not, and every doctor appt or test having to prepare myself for possibly bad news, or not and second guessing every decision I make to see if it was the right one because it has such significant potential consequences if I get it wrong. And really no one to tell me what to do because there just isn't another kid who has gone ahead of us with the particular issues DD has. Trying to protect her from unnecessary interventions because she is so anxious, but stay on top of potential issues and not being sure I ever have that line in the right spot.
post #23 of 42
When I first got DS's diagnosis of PDDNOS, I literally sobbed the showering, wondering to "What if he regresses? What about my career? and then feeling guilty right afterwards. It's not easy when you see a niece talking a mile a minute, while your own kid doesn't say a damn word even though he's only 3
post #24 of 42
I would love it if DS would stop arguing with me about EVERYTHING, and stop fixating on every.little.insignificant.thing.

I would love it if he'd stop being so physically aggressive. My neck hurts from him jumping up on the back of my chair several times today.

I wish I could deal with him a little better. I'm not coping well. DH is trying to pick up the slack but we're really in need of some relief.
post #25 of 42
mamas

I wish I didn't have to walk on eggshells around DD.
I wish 'friends' wouldn't judge my decisions when they have no. idea. about my day-to-day reality.
I wish professionals would take my concerns seriously.
I wish we had more answers.
I wish we didn't have a family history of anxiety, depression, and bipolar disorder that make me fear for DD's future.
post #26 of 42
I share many of the frustrations already expressed. I would love a week just to sleep and read undisturbed. I would love to be able to leave my daughter with my parents for a weekend.
post #27 of 42
Quote:
Originally Posted by BeautyforAshes View Post
I share many of the frustrations already expressed. I would love a week just to sleep and read undisturbed. I would love to be able to leave my daughter with my parents for a weekend.
post #28 of 42
Thread Starter 
Oh, Mamas! So many of your comments resonate with me! So many of the same frustrations and concerns and feelings of guilt over all of it.

I think I really get frustrated by the reality that none of my friends with NT kids get what I'm going through most of the time. One day recently I was driving home from a field trip with a friend and her son. DD asked her usual litany of endless repetitive questions which I answered, deflected, redirected or ignored. My friend looked at me with wide eyes and said, "Now I get it. No wonder you tell me the endless questions drive you nuts. I thought my kid asked a lot of questions but he's got NOTHING on yours!"
post #29 of 42
Quote:
Originally Posted by beachcomber View Post
Oh, Mamas! So many of your comments resonate with me! So many of the same frustrations and concerns and feelings of guilt over all of it.

I think I really get frustrated by the reality that none of my friends with NT kids get what I'm going through most of the time. One day recently I was driving home from a field trip with a friend and her son. DD asked her usual litany of endless repetitive questions which I answered, deflected, redirected or ignored. My friend looked at me with wide eyes and said, "Now I get it. No wonder you tell me the endless questions drive you nuts. I thought my kid asked a lot of questions but he's got NOTHING on yours!"
That's the hardest part for me sometimes. Some days it would be so nice to have a friend to call who really understood what my days are like (and even saying that I feel guilty b/c I know many, many mamas have it much worse than I do). But really nobody gets it. Not even my family. I have a niece who has SN's so you would think maybe I could bond with my SIL over the struggles but really they are very guarded about talking about it at all. And I find myself either trying to sound very optimistic and downplay any struggles b/c I don't want to be focusing on it myself - I want all my kids to feel as normal as possible and I don't want DD's health issues to be the thing we focus on. Or if I open up to someone about the reality then I feel guilty about sounding like I'm complaining or focusing on the negative.
post #30 of 42
my dd saw a pg woman at the hospital while we were taking a walk in the meditation garden. she was in hospital gown and walking, pausing at times during contractions.

i parked the wagon and we sat there enjoying our time outdoors. dd said "i think when i am grown i will adopt if i decide to have kids."

i smiled quite warmly at her and told her i thought it was a wonderful idea.

i have never felt a moment so full of emotion and so absent of emotion before...as we sat there and talked and she gave her reasons for not wanting kids.

it represents what is hardest about this. here is my tiny child, her classmates are starting to get their periods. she still looks like a little kid, but she already knows she doesn't want to pass her dna to a child. (her words).
post #31 of 42
Thanks so much for sharing mamas.

I had a hard day today and checked in here even though it's been a long time.

Reading your posts really put things in perspective for me. I get what a lot of you are saying, but some of you are dealing with even more than I am which reminds me of the blessings I do have.

His school has been the absolute hardest part these days. I sometimes stop and wonder if we're really in the 21st century because they seem to have stopped in a time warp circa 1970.

I'm a single mom, and I often feel utterly alone. My ex is apt to yell at me even while I'm doing my best to get everything my son needs.
post #32 of 42
I think there are two aspects that are the hardest for me.

The first is just the basic daily medical chores. It just gets tiring after a while. Most of them are absolutely not optional (I would love to be able to say "oh hey, I'm tired." and go to bed without having to first hook up machines and make formula and plug in chargers, check temps, etc. I just want to go get in bed!) and others are more gray area. So sometimes I'll skip a day of something (like flushing his colon) and then the next day it's so horrible to do and then I feel so bad for having skipped it in the first place. It just seems like none of us can get a break and I know I would love one and I'm pretty darned sure he'd love one too. It'd just be nice if some of it was optional or at least not constant.

The second aspect is the constant second guessing. Are we doing enough? Are we doing too much? Is it hurting him in the long run to decline an invasive test? Should we be trying to change anything that we're currently doing? What's best for him? It just seems like I can't ever say "we're doing the best job that we can" even though I know that. All I can do is worry that we're doing too much or too little or that we're missing something big. I hate all that doubt and worry.
post #33 of 42
Quote:
Originally Posted by MotherWhimsey View Post
The second aspect is the constant second guessing. Are we doing enough? Are we doing too much? Is it hurting him in the long run to decline an invasive test? Should we be trying to change anything that we're currently doing? What's best for him? It just seems like I can't ever say "we're doing the best job that we can" even though I know that. All I can do is worry that we're doing too much or too little or that we're missing something big. I hate all that doubt and worry.
that's the one that makes everything so freaking crazy at times.

have you considered giving yourself a break from that? you can't skip formula, chargers, temps, etc...but you CAN take a day off of second guessing.

it's good to second guess. but you can schedule it like everything else.

that's my way of dealing with that part anyway. any invasive "should/could i ..." thought is first evaluated for timing. if it's not the right day i don't think about it until the next day.

i know it sounds ridiculous but it works. it sort of started as a joke when we stayed an extra day in the hospital for a weird 2nd level immunoglobulin lab. i remember saying "i'm not so worried about it because today is saturday and on saturdays all the igabcd's are all happy."

so my second guessing schedule is limited to tuesdays, wednesdays, and sundays excluding fed ex holidays.

give yourself permission to second guess and permission to break from it. it's a lot of work.
post #34 of 42
I wish that for 1/2 an hour, I could let my guard down. Not have to worry about saying something in the wrong way or with the wrong words because that could lead to a complete meltdown. I wish I could let her play with other kids at the park without worrying that she will become violent. Most of all, I wish that I was bonded to her instead of spending most my time feeling like I am raising a stranger. I never know which side of her I'm facing so I can never just let down my guard and enjoy her in that moment.

I also wish that others could see her disability, just long enough to realize that I'm not a bad parent and she is not a bad kid, she has a disability, and the nasty looks don't help.
post #35 of 42
Quote:
Originally Posted by Logan's Mom View Post

Quote:
Originally Posted by CherryBomb View Post
Yes And I feel ashamed for being embarrassed.

ME TOO!



Me Too! 

 

Some days I just want to run away to the circus!  It would be quieter lol.gif

post #36 of 42

Showing up to DS's integrated preschool class on Halloween, realizing that he is the only non-verbal one there, noticing that he is the biggest one as the 7 of them line up against the wall for photos, half of which he was absent because he was the only one unaware of what was going on.

 

The injustice, knowing that no matter how well things are going my heart feels like its been catscratched at least once daily.  Knowing that my DH's new hobby of identifying friends' behaviors as "on the spectrum" because deep down it gives him hope that DS will grow up to be artistic, social, VERBAL, and just tadly eccentric.

 

Knowing that our DS is so popular and congenial because he doesn't talk, and the shame of knowing a part of us likes it this way.

 

Just waiting for DS's verbal stims to fetch him some big-kid teasing and bullying.

post #37 of 42

Hello Everyone, I am a new member. I was searching around and stumbled upon this thread and it got to me because I have similar frustrations. I completely understand how all of you feel. I commend all of you for staying strong dealing with all that you deal with.

 

As a single mom of 1, I get frustrated on so many occasions. I had my daughter when I was 19 and I am now 27. Her father decided he couldn't handle the fact that she was disabled and decided to disown her and not acknowledge her. My daughter has so many issues at times I just want to scream. She is blind, can't walk (club feet - but can walk with my help and can walk better if she has her afo's on, but not by herself), she can't talk, she can't chew, spinal issues, still in diapers and mentally challenged.

 

I truly get tired of driving to doctor appts an hr away, and the appt is like 10 - 20 mins tops. At the current moment I still live with my mother because I just don't have the funds to have my own place. Needless to say clashing of 2 women with their own thoughts and opinions on how to raise MY child has taken it's course. I get so annoyed sometimes, most times with my mothers constant "my way or the highway motto" ..despite the fact I do pitch in around the house and that includes helping with the bills. I will say over the years our relationship has progressed from horrible to decent.

 

My frustrations:

1. I work Monday-Friday at a fast-food restaurant (not my ideal job especially since I have a college degree and can't pick up any work where I live) during my daughters school hours. I only have weekends off..and I'm always in the house after work and on the weekends. I never get a chance of relief.

 

2. I get tired of people always coming down on me about what my daughter eats. I can't force her to chew and eat things she doesn't like. For the most part she's healthy and she doesn't eat chips, cakes, ice cream etc. She only gets cake on special occasions..so why on earth am I always being criticized for giving her things she likes (peanut butter and jelly and oatmeal - her 2 favorite items)..don't get me wrong she will eat other food items (mashed up of course).. other than that, I have to force feed her, which isn't fun..don't crucify me otherwise. It's not as easy as looks and I wish people would realize that.

 

3. Like many of you, I don't have friends that understand what I am going through.

 

4. I'm lonely all the time.

 

5. Biggest annoyance for me, when me and my daughter are out in public and people are just STARING at my child like she is a monster from beyond the grave. It annoys me so bad. Some people just don't have manners or common courtesy to look away. "She's human people. she bleeds red just like you and I." - Sometimes I just want to put a sign on her, that reads "You've just been caught staring..look away! Or if you have questions, then ask my mom!" But ya know that isn't right either, that's like putting her on display..but the thought of wanting to yell that has occurred.

 

6. Wish I lived in a different house, so I could get a wheelchair ramp attached. My house isn't in a position to have one attached, according to various ramp builders..which indeeds sucks because she is becoming heavier and it's wearing me down. I have fallen many times with her in my arms because of the limitation of my sight or tripping. Hurting myself in the midst of protecting her.

 

7. I hate spending the night in hospitals. My daughter has had at least 5 surgeries (and still some more to go) and overnight/ a month stay is NOT fun. I'm truly annoyed with them. 

 

8. Many times, I do wish she could just see. Man oh man, how amazing that would be.

 

I'm definitely an emotional wreck (but I never show it on the surface) and at times think I am worthless and this is all that I am capable of (working in a fast food joint and staying home) until I die..It's hard for me to be in a relationship because I constantly think guys don't want to deal with all the baggage I have. At times I do just want to disappear and consistently think "I wonder what it would be like if she didn't have all these problems"..I do feel ashamed for having these feelings..but I love her with all my heart and soul, and all I can do is continue to love her until I die.

 

LOL, I'm sorry for writing a novel. But thanks for making this post..it gave me a chance to vent.

post #38 of 42


 

Quote:
Originally Posted by IxIa View Post

I desperately need more respite! I'm frustrated that I don't have enough support and breaks from my DS. Taking care of DS is very, very demanding and it's wearing me down. DH and my families don't/won't help because they're busy with their own lives and they don't feel they can handle DS. Out of pocket, professional respite is financially out of reach.

Just need a break once in a while.


Maybe we can ship them to others on the board for respite??? Is that legal???? Just kidding!  But seriously, sometimes I probably could be convinced to try it!

post #39 of 42
Quote:
Originally Posted by tsfairy View Post

I would love it if DS would stop arguing with me about EVERYTHING, and stop fixating on every.little.insignificant.thing.

I would love it if he'd stop being so physically aggressive. My neck hurts from him jumping up on the back of my chair several times today.

I wish I could deal with him a little better. I'm not coping well. DH is trying to pick up the slack but we're really in need of some relief.


This exactly, in every way, except for the DH, he walked when things got bad. To be able to walk through the mall without having to touch and feel everything, push every button on every door or risk a full meltdown. To be able to get him dressed and out the door without a meltdown on the way because it's not the "right" shirt he has on. and God love him he doesn't even know what the "right" shirt is, only that the one he has on isn't it.

post #40 of 42

There are a lot of frustrations, some are similar to those you all have already shared.  But for me, just the lack of support or even basic understanding from most of the people around me IRL makes it extra difficult and isolating.  DS already has oral aversion as well as all three of us having many food allergies, so there's lots of food DS is not eating as well as foods that we all have to avoid anyway.  But whenever I get to the point where I have to explain that he won't eat something (I usually avoid explaining, except when food is offered in a social situation) people always love to tell me how their child is a picky eater and won't eat, like, hot dogs or something.  I wish it was just hot dogs.  No, *I* was a picky eater as a child....this is something *entirely* different, a whole other level of not eating.  Then there's "he'll grow out of it just like mine did".  They have NO clue.  None.  Then back when he was nursing, the "problem" was of course that he was being nursed :rolleyes , or nursed too much, or that we just weren't offering him different foods :rolleyes.  Or that he just needed to eat around other children.  Seriously.  NO clue.  AAArgh.

 

Okay, thanks for letting me get that out.

 

OTOH there are, just a few, gems of people around me IRL that do have some understanding, or at least try to understand.  Gotta love those couple people.


Edited by KimPM - 11/16/10 at 5:51am
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