The frustrations of Special Needs parenting

[beachcomber]

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.

[beachcomber]

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.

[anj_rn]

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.

[starlein26]

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...

[askew]

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.

[Guinevere]

Originally Posted by askew

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

[~cassie]

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.

[2lilsweetfoxes]

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.

[Tinkerszs]

I've about had it with the school and I've only just begun.

[anj_rn]

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.

[beachcomber]

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.

[greenluv]

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??

[Logan's Mom]

Originally Posted by greenluv

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??

[Logan's Mom]

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!

[isisreturning]

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.

[CherryBomb]

Originally Posted by isisreturning

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.

Apologizing for his behavior, being embarrassed by his behavior.

Yes And I feel ashamed for being embarrassed.

[Logan's Mom]

Originally Posted by CherryBomb

Yes And I feel ashamed for being embarrassed.

ME TOO!

[RiverTam]

Originally Posted by CherryBomb

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.

[joyluc]

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.

[Eyelet]

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.