The frustrations of Special Needs parenting - Mothering Forums

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#1 of 42 Old 11-02-2010, 11:09 PM - Thread Starter
 
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Okay, we're all here because our kids are special needs. They all have issues, behaviors, concerns, medical baggage, labels, problems, sensitivities, etc.

This thread is an outlet for us. A place where we can literally gripe about what's hard regarding parenting our kids. We get to complain here without any condemnation or judgment. Because one thing I've learned in my short time as a SN parent is that I need outlets for this kind of frustration or I risk turning that subconsciously on DD and that's just not fair to her.

So, fire away. What drives you bonkers about parenting your SN child? What's been hard for you today? What would you love, love, love if it just went away for 1/2 an hour or a day or even a minute?

Share your feelings and thoughts and know you're totally supported and understood.

Hugs to all of us.

Weary SuperMama superhero.gifto my  amazing neurodiverse 6 y.o. DD hearts.gif and to my on-the-go neurotypical 3 y.o. DS wild.gif

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#2 of 42 Old 11-02-2010, 11:12 PM - Thread Starter
 
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Let me be the first!

The hardest part of parenting my 4 (almost 5) y.o. DD right now is her complete lack of ability to learn from experience. No amount of doing it over and over and over and over and over and over seems to make a difference to her. She still can't figure it out and we both get frustrated by that sometimes.

Another thing is her inability to change behavior based on correction. She understands on an intellectual level when she's calm that X behavior is not okay. But when she's fired up, out it ocmes anyway. Afterwards, she's contrite and apologetic but at the time, she's hellfire and tantrums and screaming and throwing and you'd better duck. It's hard to contain my instinctive angry response to it. I *know* she's got inabilities due to the ASD. Sometimes I wish she had a little "ASD" sign on her forehead to remind me she's different. Because, well, she LOOKS just like any other kid, you know? So hard to reconcile that at times.

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#3 of 42 Old 11-03-2010, 12:28 PM
 
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I would like to be alone in my house. Between the nursing, and therapy, and children, and DH, etc etc, I would like to be alone for once.

I would like to be able to leave the house on a whim, instead of planning & scheduling each outing.

I would like to eat ice cream (not really related to special needs, but I hate my lactose intolerance), not soy cream or almond, real milky creamy blue bell chocolate ice cream.

Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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#4 of 42 Old 11-03-2010, 12:31 PM
 
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I'm physically exhausted. My son is very physically disabled and helping him do basic things is wearing me out. But, I'm not ready to have a home invasion for respite care.

The other difficult thing is living with extreme anxiety about his seizure disorder (each seizure is a status epilepticus one...and they've increased in frequency despite increasing his meds). I go to sleep every night wondering if we'll be taking a trip to the ER that night and during the day, weird new things he might do make me nervous (is he starting a seizure?)

It takes so much mental energy to stay positive...

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#5 of 42 Old 11-03-2010, 12:40 PM
 
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I would love a month off of appointments. DD has PT 2x a week, OT once a week, Osteopath once a week, and ST once a week. Then we usually have two Dr appointments a month between all the specialists. She is only 15 months old and I am already exhausted by this.
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#6 of 42 Old 11-03-2010, 01:04 PM
 
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I would love a month off of appointments.

3 of my 6 kiddos have dx SN, and all the appts: the attempting to schedule appts, the logistics of going to the appts, and the inevitable follow-up or testing required by the appts. is completely exhausting. And that's in the best-case scenario, when everything goes smoothly and the medical professionals we're seeing are actually helpful. Unfortunately, that doesn't happen at every appointment. It's so emotionally draining.

I've actually held off following up on something important medically for one of my kids b/c we've run into SO many roadblocks, and it will require countless hours of phone calls, begging and pleading, insurance issues, and ultimately travel out of state to get the necessary evals. Every time I think about getting the ball rolling, I just want to go hide somewhere.

I also hate feeling like I'm never going to completely get a handle on all the issues. We'll make some progress in one area, but that only seems to open up the way for more things to crop up. I am fiercely proud of my children's accomplishments, but at the end of the day, I never come away feeling like I'm a particularly great mom -- there's always so much more I *could* be doing, yk?

I wish I were a more patient person, and I'm already vastly MORE patient than I was as a young adult, lol! I wish that I didn't get INSANELY frustrated at 6 yo DD's (anxiety disorder) 5th meltdown of the day over something like going upstairs by herself to grab a pair of shoes or by 4 yo DD's (Down Syndrome) daily fingerpainting with poop if I'm just 30 secs. too late or by 11 yo DS's (ADHD) dramatic, hours-long wailing and proclamations that his life is worthless b/c I've forbidden him from doing x, y, or z. Not to mention how cranky all that makes me in dealing with the other 3 kiddos who just want some basic love and validation from mom.

Guin

caffix.giftoddler.gifnocirc.gifBusy, grateful mama to: Kieran (12); Hanna (10); Cameron (8);
Charlotte (6);Sophie (5) Down Syndrome & so beautiful! brokenheart.gif(9/08), & rainbow1284.gifDuncan 8/26/09
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#7 of 42 Old 11-03-2010, 01:22 PM
 
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My biggest issue is the language delays, my 2 yr old has much better language skills/understanding than my 3 yr old. If I could only get his understanding to where it needs to be I think we would be set!

Another thing is my 3 yr old's personality-I love that child, and in later years it will certainly come in handy, but he is the MOST stubborn/strong personality I have ever met! Aside from my husband lol. I could take all of the issues we have if I didn't constantly have a 3 yr old saying NO to every single thing, fighting constantly with brothers, with me, fighting every issue he can. If he was an only child-it would be a lot easier, but not with 2 other children, he is very competitive with them.

Cassie, mom to Alex(4/7/05), Aidan(7/12/07), and Andrew(8/18/08)

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#8 of 42 Old 11-03-2010, 07:04 PM
 
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Navigating the insurance--what they cover/don't cover versus what the doctors and therapists recommend your child receives. Having to traipse all over town for all the various therapies. Therapists that are all on different "pages" about what is best. Trying to coordinate schedules. EX: The "I have an opening on Thursdays at 10 am" from a speech therapist we are trying to get services with, I look at the calendar and realize that DS has an appointment with the physical therapist on the other side of town at 9:30 am Thursdays. What I'd love: a self-contained "school" that includes all of the therapies needed in that building beyond the services available in the SpecEd classes. The therapists talk to each other and coordinate "treatment". When the children are ready for academics, then the academics are added into the treatment.

Dealing with DD's ADHD after her meds wear off and she's riling up her brother and sister and being goofy, loud, and jumping around--while I'm trying to get them wound down and go to bed.
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#9 of 42 Old 11-03-2010, 08:36 PM
 
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I've about had it with the school and I've only just begun.

Ds - 2002 High Functioning Autism
Dd - 2004 6 going on 13
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#10 of 42 Old 11-03-2010, 10:41 PM
 
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I would also like to add the people questioning me on my DD's diet. Yes, I put real food through her g-tube, yes the base of her feeds is still breast milk. Yes, I am aware that she is 19 months old. I plan to stop breastfeeding sometime before she hits puberty. no we do not do formula, no we do not have a back up formula, no she has never gotten formul, no we will not consider switching to formula. LOOK AT MY CHILD NOT THE CHART. I know she liiks health, her skin is pink, her nails are stron, her hair is shiny, do you think that might be because I feed her REAL food and not a formula that's 1st ingredient is corn syrup solids. Pleas remove your head from your bum and acknowledge that I am capable of feeding my child.
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Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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#11 of 42 Old 11-04-2010, 12:13 AM - Thread Starter
 
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Wow Mamas. Thank you all for sharing your frustrations! I know it's hard being where we are and I'm glad you all feel strong enough to share that hardship so that we can laugh with each other over the sheer ridiculousness of some things.

If I could slap the next dumb govt bureaucrat who stalls on providing info or service to my DD, I would.

I, too, am sick of the appointments juggle. I have it pretty good compared to all of you, too. We go to a therapy center that has almost all the services she needs right now. Even with that, it's exhausting at times just looking at my calendar to see the preschool, the interventionists, the meetings, the specialist appts, the various other stuff for my DS ...

I hate being my child's case worker - her only advocate wiht the govt. If it weren't for my phoning, nagging, harassing, nudging and fighting we'd get nothing. Why is the system so darned adversarial?! Why won't people just HELP because they can? Bah.

Weary SuperMama superhero.gifto my  amazing neurodiverse 6 y.o. DD hearts.gif and to my on-the-go neurotypical 3 y.o. DS wild.gif

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#12 of 42 Old 11-04-2010, 12:33 AM
 
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Mine is a paradox, I guess. I have the horrible feeling that I may not be the "right" parent for my dd...BUT I don't trust that there is anyone else in this whole world who could do it better.

How's that for messed up??

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#13 of 42 Old 11-04-2010, 01:30 AM
 
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Mine is a paradox, I guess. I have the horrible feeling that I may not be the "right" parent for my dd...BUT I don't trust that there is anyone else in this whole world who could do it better.

How's that for messed up??
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#14 of 42 Old 11-04-2010, 01:35 AM
 
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I hate having to "learn" on my child. Questioning myself. Am I doing a good job?

Navigating the school system, hiring advocates and lawyers. Getting outside evals to be only told by the school that he needs xyz instead.

Trying to figure out the best approach for my child. Apologizing for his behavior, being embarrassed by his behavior.

Not EVER having the home alone time.

Hate myself for staying later at work or watching the clock until he goes to bed because I just need a break from it all.

Having family say "oh is she still on that?" when they hear he actually received his dx that I have been telling everyone he has since he was a baby. Having family not understand AT ALL what we are going through and why we do the things we do.

PHEW -- feeling better now. Thanks!
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#15 of 42 Old 11-04-2010, 02:17 AM
 
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Usually I'm very delighted in her and grateful that she survived, but some days I get really overwhelmed at the uncertainty of what her delays/disabilities will mean for her and for us as she gets older, and other days I'm just worn out by the toil and drudgery of some of her medical needs (which are admittedly comparatively minor).

Packing up to go out of town with her is a total chore and I hate it. I avoid it at as much as possible.

Mama to my talkaholic DS (Oct 2003) and my climbaholic DD (May 2007).
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#16 of 42 Old 11-04-2010, 08:55 AM
 
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Usually I'm very delighted in her and grateful that she survived, but some days I get really overwhelmed at the uncertainty of what her delays/disabilities will mean for her and for us as she gets older, and other days I'm just worn out by the toil and drudgery of some of her medical needs (which are admittedly comparatively minor).
Me, too.

Quote:
Apologizing for his behavior, being embarrassed by his behavior.
Yes And I feel ashamed for being embarrassed.
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#17 of 42 Old 11-04-2010, 04:49 PM
 
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Yes And I feel ashamed for being embarrassed.

ME TOO!
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#18 of 42 Old 11-04-2010, 05:25 PM
 
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Me, too.



Yes And I feel ashamed for being embarrassed.
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.
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#19 of 42 Old 11-04-2010, 06:35 PM
 
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All of the appointments for sure and then begging to get in earlier because he is struggling.

This week is the first year anniversary of his attempt and he is really distressed. He had been at school all day this year but not this week. I have missed 2 meetings that were my meetings today. I feel so bad about how much he is hurting but I can't go back to the constant care of last year. I guess I am resentful because it felt like we were making progress and now I am worried for him.

Married to the love of my life, mom to DS :
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#20 of 42 Old 11-04-2010, 06:57 PM
 
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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.

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#21 of 42 Old 11-04-2010, 07:07 PM
 
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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.
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#22 of 42 Old 11-05-2010, 03:19 PM
 
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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.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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#23 of 42 Old 11-06-2010, 04:37 PM
 
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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
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#24 of 42 Old 11-06-2010, 05:09 PM
 
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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.

Mama to two crazy boys (8/05 & 9/07) and happy wife to one wonderful hubby.
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#25 of 42 Old 11-06-2010, 05:21 PM
 
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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.
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#26 of 42 Old 11-06-2010, 08:53 PM
 
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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.

Tired mama to my wild childenergy.gif ribbluyel.gif

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#27 of 42 Old 11-07-2010, 12:45 AM
 
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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.
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#28 of 42 Old 11-07-2010, 08:04 PM - Thread Starter
 
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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!"

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#29 of 42 Old 11-08-2010, 12:45 AM
 
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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.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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#30 of 42 Old 11-08-2010, 01:43 AM
 
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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).
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