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I'm falling apart...

post #1 of 44
Thread Starter 
ok this is terrible....but i have to vent so I don't explode. I feel like I am losing it! I'm sure I will regret every word of this and wish I never wrote it b/c I'll feel so guilty for admitting how I feel.... but I am SO over this parenting two special needs kids thing!

I love love love love love my kids. Did I mention that I love them? yep. I do. with every ounce of me. which is why I think this is so hard for me. I am SO overwhelmed and i have been for a long time. tonight it was so bad I just wanted to throw the ever-screaming baby across the room. I had to fight the urge to just stand up and throw him!

I don't usually feel violent, in fact I think I am very giving. but the lack of sleep and the CONSTANT INTENSITY of everything 24-7 is wearing me so thin. I feel there is nothing left of me anymore and i am only mom to 3 kids - two of which have special needs. There is nothign left of me. I don't have hobbies, friendships, work, goals or aspirations (except for sleep!!!). not b/c I don't want to or try to... but b/c there is no possibly way.

the suffocating feeling is that besides my husband (who is himself overwhelmed - though better at stuffing it down than I am!) we have NOONE to help. My littlest has serious oral issues and allergies and i can't get to him to handle anything but breastmilk and some rice crackers I made him. that's it. so I can't hire a babysitter. I can't seem to pump anything anymore - he can get it, but i can't pump it for some reason. so I can't ask someone to take over a shift for me. we just moved to a new state 3 weeks ago and I can't even find the time of mental energy to look up any special needs services. I'm too tired to check my email or play games with the kids or do anything. I'm so tired that my brian refuse to think right and my body refuses to go on. everyday is this battle. I bargain with my body to just continue a little longer. I feed it as best as I can, give it plenty of exercise, and take supplements for things I am not allowed to eat on my VERY restrictive diet that I am on for the baby's benefit.

I stay up all night between my crippling anxiety (brought on by 5.5 yrs of "special needs") and my baby who refuses to sleep. I often don't sleep til 5 or 6am when my husband takes over and then I sleep til 11 or noon if I'm lucky. my anxiety is UNBELIEVABLE. I feel so close to a panic attack regularly (esp. right now b/c I'm on my period!)

that is our whole life. I stay up with the baby and he goes to sleep early and get up with the baby (bringing him back to nurse constantly). rinse. repeat. every day. always.

nevermind I have a 10 yr old typical boy that gets NO attention from me lately. he must think I hate him! the poor kid always comes last. I feels o bad for him. he's such a good boy.

There are many wonderful things about my kids. They are blessings and i feel lucky to have them. I don't hold it against them that they have special needs... but I feel like I am going to just fall apart. I wish I didn't feel that way, but I do. I feel like I'm going to just fall asleep and never wake up one of these days b/c my body is so tired.

what do you do when you get to this point? how do you keep going when you have nothing left in you? how do you get yourself feeling "well" enough to continue take care of them?
post #2 of 44
Quote:
Originally Posted by HennyPenny View Post
ok this is terrible....but i have to vent so I don't explode. I feel like I am losing it! I'm sure I will regret every word of this and wish I never wrote it b/c I'll feel so guilty for admitting how I feel.... but I am SO over this parenting two special needs kids thing!

I love love love love love my kids. Did I mention that I love them? yep. I do. with every ounce of me. which is why I think this is so hard for me. I am SO overwhelmed and i have been for a long time. tonight it was so bad I just wanted to throw the ever-screaming baby across the room. I had to fight the urge to just stand up and throw him!

I don't usually feel violent, in fact I think I am very giving. but the lack of sleep and the CONSTANT INTENSITY of everything 24-7 is wearing me so thin. I feel there is nothing left of me anymore and i am only mom to 3 kids - two of which have special needs. There is nothign left of me. I don't have hobbies, friendships, work, goals or aspirations (except for sleep!!!). not b/c I don't want to or try to... but b/c there is no possibly way.

the suffocating feeling is that besides my husband (who is himself overwhelmed - though better at stuffing it down than I am!) we have NOONE to help. My littlest has serious oral issues and allergies and i can't get to him to handle anything but breastmilk and some rice crackers I made him. that's it. so I can't hire a babysitter. I can't seem to pump anything anymore - he can get it, but i can't pump it for some reason. so I can't ask someone to take over a shift for me. we just moved to a new state 3 weeks ago and I can't even find the time of mental energy to look up any special needs services. I'm too tired to check my email or play games with the kids or do anything. I'm so tired that my brian refuse to think right and my body refuses to go on. everyday is this battle. I bargain with my body to just continue a little longer. I feed it as best as I can, give it plenty of exercise, and take supplements for things I am not allowed to eat on my VERY restrictive diet that I am on for the baby's benefit.

I stay up all night between my crippling anxiety (brought on by 5.5 yrs of "special needs") and my baby who refuses to sleep. I often don't sleep til 5 or 6am when my husband takes over and then I sleep til 11 or noon if I'm lucky. my anxiety is UNBELIEVABLE. I feel so close to a panic attack regularly (esp. right now b/c I'm on my period!)

that is our whole life. I stay up with the baby and he goes to sleep early and get up with the baby (bringing him back to nurse constantly). rinse. repeat. every day. always.

nevermind I have a 10 yr old typical boy that gets NO attention from me lately. he must think I hate him! the poor kid always comes last. I feels o bad for him. he's such a good boy.

There are many wonderful things about my kids. They are blessings and i feel lucky to have them. I don't hold it against them that they have special needs... but I feel like I am going to just fall apart. I wish I didn't feel that way, but I do. I feel like I'm going to just fall asleep and never wake up one of these days b/c my body is so tired.

what do you do when you get to this point? how do you keep going when you have nothing left in you? how do you get yourself feeling "well" enough to continue take care of them?
I have read so many of your posts, and your posts are always filled with so much patience, courage and love. I know that you've done so very well, so you are definitely entitled to write this post.

I go through phases of the same. in fact, when I found out I was pregnant again, I kind of because I have those days when I feel like I have nothing left. the past few weeks have been like that.

I don't have any other word of advice, just the usual trite things. This too shall pass etc etc. My oldest kids have gotten less needy as they developed, and it has helped a lot.
post #3 of 44
I did fall apart. And somehow we survived that. It wasn't without effects on my kids, my marriage, myself but we did come through it.

You obviously can't go on like this indefinitely or even much longer it sounds like.

I'm trying to think of what you can do. You sound dangerously overwhelmed and fatigued. I have been there.

Baby-what are his allergies? What is your restricted diet? Is he reactive to all hypoallergenic formulas? Have you tried elemental ones? It might be time for that step. EOS kids even usually tolerate the elemental formulas. You need sleep. You sound so desperate and I have been there and I feel awful for you.

No family or friend to come and give you a break at all? Can a parent travel to you and stay a while?
post #4 of 44
i just want to say that without having met you, i can say that you are an incredible mother. please stop for one second and just give yourself a giant pat on the back. giant. it doesn't take away the exhaustion or anxiety or fear, but it reminds you of the truth for one moment. what you do is nothing short of amazing. the exhaustion sucks. the never-endingness sucks. the all-consuming nature of special needs parenting sucks. and even if we can't change that, i hear you 100%. and i appreciate that you're raising your kids with such love and such respect. (the wanting to throw the baby across the room is just real - i've been there more than i care to admit.) i'm sorry it feels so shitty right now. i'm sorry you're alone. i could never believe that things would truly ease, but there have finally been times lately when it did. and those moments are what keep me going.
i hope you can take one hour soon and just do something you love - eat yummy stuff, watch junk tv, take a walk, take a bath with your babe, go get ice cream/sorbet, drink a glass of wine, go look at pretty stuff, etc. etsy was my connection to the outside world of beauty for a long while - lol!
, katie
post #5 of 44
You need to sleep, mama. Sleep deprivation is serious! It makes people crazy, literally losing-your-mind crazy. Falling apart, as you put it.

I'd try some hypoallergenic formulas--Alimentum is one, Neocate is another--I know you probably don't want to do that, but sleep is so so important. You're no good to your babes if you can't function.
post #6 of 44
I would totally look into doing a trial of some kind of elemental formula. Maybe if it was allergies that were making his gut feel horrible all the time, removing the problem might let his gut calm down enough that he can sleep. Do you think it's the food that's the problem? Have they don't an endoscopy with biopsies for eosinophilic disorders?
post #7 of 44
Thread Starter 
Quote:
Originally Posted by sbgrace View Post
Baby-what are his allergies? What is your restricted diet? Is he reactive to all hypoallergenic formulas? Have you tried elemental ones? It might be time for that step. EOS kids even usually tolerate the elemental formulas. You need sleep. You sound so desperate and I have been there and I feel awful for you.

No family or friend to come and give you a break at all? Can a parent travel to you and stay a while?

He is allergic to... ANY dairy (cow, sheep, goat, raw or pasteurized etc...), gluten, soy, corn, anything in the lettuce family and has trouble with a host of other things that I wouldn't call allergies but intolerances.

we took everyone's advise with my daughter (who is almost identical to my son as far as symptoms) and she reacted so badly to the formula that she instantly started to fall apart. it was like someone hit some kinda switch. he literally stopped almost all communication, and started regressing. it was terribly scary and way more overwhelming than what I am already dealing with. if I thought formula (any kind!) was an option I was so use it to supplement with. But I can not take things getting harder instead of easier. it's almost like when I introduce anything new he gets worse.... and then it takes days to get him back to the same place we started. I wish I wasn;t so overwhelmed right now, but I really am. just trying formula scares the poop outta me b/c I don't have a drop of extra energy left.

I have no friends in VA (we JUST moved here). and we don't have parental help. both of my parents are overweight and have many health problems so they can't even lift him! (they visit but honestly as much as I like them visiting b/c I love them, they make more work for me. they try to help but they can't.) my husband's mother left long ago and doesn't want anything ot do with us. and His Dad isn't really much on helping. We just don't have a helpful family. we tried to hire his sister on as a babysitter (just to help during the days, not even to babysit alone) and she just couldn't handle "the pressure". (gimme a break!) she'd rather smoke pot all day with her boyfriend. so... back to square one. no help. (believe me I've tried).

I'm toying with finding someone in the area to be a glorified mommy's helper but since we just moved here I don't know anyone well enough. I have to kinda wait til I get to meet people.I'm trying but you know how hard it can be to get out with SN kids.

I'm terribly sorry for whining. I'm just so full of emotion and exhaustion I just needed to hear from some understanding people. and thank you for not making me feel like the worst mom ever - b/c believe me I already do! i hate feeling like at every turn there are more obstacles than i can possibly handle. i hate that when i try something new it tends to get worse instead of better... bleh.
post #8 of 44
Thread Starter 
Quote:
Originally Posted by BetsyNY View Post
You need to sleep, mama. Sleep deprivation is serious! It makes people crazy, literally losing-your-mind crazy. Falling apart, as you put it.

I'd try some hypoallergenic formulas--Alimentum is one, Neocate is another--I know you probably don't want to do that, but sleep is so so important. You're no good to your babes if you can't function.


believe me I realize this (or I wouldn't have posted). but sometimes life is hard and there is no way a person can see to be able to get sleep. I want sleep, I'm willing to work for it! If I had ANYONE I could ask to watch I would in a second! I asked my mom but she said no and I can't ask again - she isn't in good enough health. plus really, as much as I love her, she just uses it as chance to remind me how difficult i was as a baby and how she had no help (*eyeroll*) and i so don't need that right now.

as far as formula - I have NOTHING against formula for supplementing in principle. I would do it if it would work. it's his allergies that are an issue. there is no such things as an allergen free- formula.... hypoallergenic doesn't cut it. please don't think I wont give him formula b/c of some ideal I have lol... I wish it was an option!
post #9 of 44
Can your DH take some time off work to let you get some rest? Your family will be in worse shape if Mama goes off the deep end and has to be hospitalized. I have been where you are, in fact I am kind of there right now. Please try to find some help-YOU deserve it, and your children do too. My mom likes to pull the "I had no help" card on us, too. But it doesn't work anymore because I've finally been able to get her to understand that there are "bad days" and then there are "dangerous situations". Call your mom and explain to her that this is an emergency. Some people just dont "get it" unless you spell it out for them. There is a reason sleep deprivation is used to interrogate prisoners of war-it DOES make you go crazy! I hope you get some help soon. Hang in there and DON'T be afraid to ask for help!
post #10 of 44
Quote:
I'm toying with finding someone in the area to be a glorified mommy's helper but since we just moved here I don't know anyone well enough.
You need to do this. Do you have the energy/time to be going to groups & meeting people, no. You NEED someone to come in so you can sleep. Put an ad in the paper or call local clinics, public health, etc & see if they have anything like that.

you NEED respite. If dh is taking care of the kids until 11am, take an hour of that time 1 day & find a respite worker.
post #11 of 44
Quote:
Originally Posted by HennyPenny View Post

I'm terribly sorry for whining. I'm just so full of emotion and exhaustion I just needed to hear from some understanding people. and thank you for not making me feel like the worst mom ever - b/c believe me I already do! i hate feeling like at every turn there are more obstacles than i can possibly handle. i hate that when i try something new it tends to get worse instead of better... bleh.
You don't need to apologize.

There must be Special Needs agencies in VA that can connect you with other SN parents. You sound like you would really benefit from an hour away from the home - go to a mall, a bookstore, a park, a walk in a safe place...

Do you qualify for respite care? I think you really need someone to come in and watch the kids for a few hours a day so you can catch up on your sleep. You're not going to be able to go on at this pace for much longer.

Do you want us to look up some links in VA for SN services? If you feel comfortable maybe you can share if your general area in VA (north or south) so we can direct you to some places.
post #12 of 44
Thread Starter 
we just moved here and I have no idea what I'm doing yet. I'm trying to figure it all out. I contacted a local support group. my 5yr old has SPD (and we think PDD but she has never been re-evaled since 15 months as it was too expensive where we lived). I don't know how things work here yet so I am not sure. we just moved, and not only did the packing with two SN kids leave me with NO sleep, but the mving and unpacking. I haven't had a moment to look into the laws or processes here yet for neither SN stuff nor homechooling yet. I'm working on it. my husband uses the computer for work (he works from hoem) and my day is just so full. I rarely have time on here anymore. BUTI'm working on it, believe me! I'm just usually too tired to think right now.

my husband works from home and has cut his schedule back as much as possible so we can still afford the basics. we moved here for cheaper housin and b/c our old house had lead and causing us way more problems for the kids. it's just been a whirlwind of a year! But my husband is tired too! we both get little sleep. I think most people would envy the commitment my husband has ot his family. So I am not whining about him. and hiim helping me as gotten me through the first yr.... but now we're both so done in we're no help to each other. we have NO extra income for sitters and so forth. you know what I mean? we have a zero balance in our savings and so forth. we live minimally as possible. we spent a copious amount of money on special foods b/c of allergies and i cook 90% from scratch. (for real "from scratch").

I love my life, I love my kids, and I have a wonderful husband. so don't think I am complaining. I'm just so eshausted that my body hurts and my mind is totally shot. I think some of it is that I was sick my entire pregnancy and on serious meds so I started off exhausted and depleted.

anyhow getting this all out here is helpful to some degree (I'll take any degree!) and i know so many of you all understand what I am dealing with. I know so many fo you function on no sleep!



I wish I knew where to start. how to find out fi I need a full diagnosis to get help etc etc.
post #13 of 44
Thread Starter 
p.s. just to clarify, my mom can't help. even if she did wnt to her health can't even allow her to pick up my son, so what good would she do? my parents are coming to visit today but i know it will end up being more work around the house. However the kids like seeing them so much and right now i don't have any friends so it will be nice to see SOMEONE! lol

we just dont have family like some people do. we are our family. the others have no interest in being involved with one another. (a lot of drug abuse and alcoholism is in both our families and it just destroys everythign)
post #14 of 44
Quote:
Originally Posted by HennyPenny View Post
if I thought formula (any kind!) was an option I was so use it to supplement with. But I can not take things getting harder instead of easier. it's almost like when I introduce anything new he gets worse.... and then it takes days to get him back to the same place we started. I wish I wasn;t so overwhelmed right now, but I really am. just trying formula scares the poop outta me b/c I don't have a drop of extra energy left.
Just to clarify, elemental formula is formula that is broken down into the elements of food. In being broken down elementally, it removes the food related proteins that cause allergic reaction. So it's kinda nutrition devoid of any food to react to. So in extremely allergic people, it's usually very well tolerated.

Neocate, elecare, and peptamen jr (this one does contain broken down dairy so I'd avoid it since you know there is an issue with milk) are all brands that have flavored oral versions. They have to be prescribed as they are considered medical food not just baby formula.

I'd say that in this case, your ped would probably be willing to just prescribe it and let you do a trial to see if it works. Down the road if it's something that isn't grown out of, you may have to look deeper for why he has such extreme allergies.

If he's still reacting to just the proteins that are in your breast milk, he may really get a whole lot better if you gave an elemental formula a shot. It might be worth trying just to see if it helped him be less miserable. You can always keep pumping so that if it doesn't work you just go back to the breast. And that way you'd have a stash built up so that someone else could take over a couple of feedings and give you a break.

Sleep deprivation and gut issues suck. I'm sorry you guys are having such a rough time. We've totally been there and it is probably one of the hardest times. Life just stinks with no sleep. I hope you guys can find a solution that works for you. s
post #15 of 44
oh, mama, 's for you!

i understand about not having a lot of family help, too. both my parents (and stepparents) love their grandkids, and are generally willing to help out financially or materially, but i can count on one hand the number of times anyone has helped by babysitting, even for an hour. DH's mom has flat said she was not ready to be a grandma, and i don't think she's even changed one diaper over the last 11 years, let alone watch the kids for longer than 15 minutes. none of our sisters have ever been very helpful, either.

moving is always hard, but moving with SN kids is insanely difficult. are you having financial difficulties as well? you mentioned how much you spend on food and that you have no savings, could you sign up for WIC or emergency food stamps or anything? (i'm just throwing ideas out, i don't really know your situation.) look online or in the phone book for your county office and call or go there and see if someone can refer you to anyone or any service that provides respite care. around here there is a state run agency that sends caregivers to the home so that parents can actually get something done (or sleep!) there is also a group called catholic charities that helps out homebound people and people with special needs. ask at local churches and/or food pantries, they almost always have good resources. is there a salvation army or goodwill store nearby? they are often good for resources, too. the high school i went to ran a free preschool as part of it's home ec/parenting class. maybe you could call the local high and see if they have something like that? or maybe talk to one of the counselors at the school and see if they know any teens that are looking for a mother's helper type of job. a lot of schools also require community service hours now, which can sometimes be filled by babysitting or helping out, especially with special needs families. that way, you wouldn't have to pay, you get some extra help, they get their hours, and everyone is happy we've done that several times.

whatever you do, and however you do it, mama, you have got to find a way to get yourself more sleep. there are days here when i call for a "family naptime" and make everyone go to their rooms to read or play quietly b/c i just can't fight it anymore. i often go for 2 or 3 days with only an hour or two of sleep, so i know how lousy you must be feeling.

i know this was pretty long-winded lol but i hope something in my ramble can help you out! best of luck, mama, you'll be in my thoughts.
post #16 of 44
Thread Starter 
thanks for your thoughts

I know what elemental formulas are as my daughter was on them. i've been scared to try them b/c of how badl she reacted to them. his gut is so sensitive that it seems like it tajes forever for him to get past a bad reaction. I'm weighing the cons and pros of that and I'm still not convinced it ould be a good idea. I'll think it over some more.

I don't have a ped yet b/c well... we don't do peds. we gave up on them after we could never find one to take us seriously about our 2nd kid (SPD/PDD). they did more harm than good and I contantly got the "you're making a big deal outta nothing" crap. not to mention they kept trying to insist she has various infections and gave her various antibiotics when all she has was a viral rash from a normal childhood virus. then tere was the time they wouldn't test her for strep (which I had) even though it was obvous she had it. they told me it was impossible for her ot ge it so young. this went on for 8 weeks tile she landed herself an ER trip.

we were in a very wealthy and well known area for docs and not ONE took us seriously. I was so sick of dealing with the stupid system (havign them look her over for 3 mins or less and handing us a stupid perscription for random meds) that I gave up and went TOTALLY holistic. it helped a lot too! I don't regret it whatsoever. but... I do hate that I can't get referals for them for common thing likes OT, evals and so forth.

now that I am in VA I'm looking into finding a pediatrician just for that purposes. I'm crossing our fingers ot find one that doesn't treat us the same way or give us problems about not vaxing (which is non-negotiable).

Maybe I'm depressed. maybe i'm tired. or both. but I gotta be honest, this almost seems like too much for one person to do! finding a good pediatrician just seems like hell right now. ugh. I'm just still so angry about what happened with the several specialists we saw for my daughter and all they put her and us through I just don't know how I can possibly trust a doctor again.

anyhow again... just venting.

thank you all for your support and advice.
post #17 of 44
just wanted to say loving thoughts and encouragement to you. No answers here just sympathy. I have 4 kiddos and life has been so overwhelming so I know just what your dealing with from the no time no hope continuum that seems to be ever present. Anyway hugs and love from one mama to another.
post #18 of 44
Thread Starter 
Quote:
Originally Posted by PiesandAbrosmama View Post
just wanted to say loving thoughts and encouragement to you. No answers here just sympathy. I have 4 kiddos and life has been so overwhelming so I know just what your dealing with from the no time no hope continuum that seems to be ever present. Anyway hugs and love from one mama to another.


thank you that means a lot!
post #19 of 44
Just sending hugs too!

If you just need a mommys helper, you should look at a church near you for them. I remember my friends saying they found mommys helpers through them. (they didnt belong to the church).

Would it be worth it to hire a part-time nanny?
post #20 of 44
also, fwiw, there is a site called care.com - it's a place to find special needs care providers. it lists a description of each care provider - age, education, diagnoses experienced with, etc. you have to pay a fee for the service, but i have the service this month, so if you want to just browse, let me know.
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