What is the hardest part of being disabled and being a parent?
 

Is it the longing to be able to do things other people can do easily? I know I often wish I could get up and run with my son, and at times it's more then a wish it's a need and I have to just find some other way to chase him down.

I think that this is the hardest thing for me about being a disabled parent, not being able to run with him or dance with him and play with him in a physical way that we both could enjoy.

I have found ways to compensate for being disabled, even making it fun from my chair but deep down I feel bad for my son that I can't play with him the way I really want to. What do you find to be the hardest part of being a disabled parent?

I grew up with a disabled parent, and remember well my father's feeble attempts to play ball with us. It was a total failure, my brother and I were deathly afraid of hurting him.
But what I remember best is that he was always there for us 6 children, always at home, always ready to listen and talk. It was wonderful, all of us spent many hours with him...we had him all to ourselves.
And none of us would have traded him for anyone.
It isn't what you can do with your child that matters, it is much more about whether you are there for them, or not. And many, many parents were not really there for their children...they had busy lives of their own, and only spent minimal time with their children. But a wheel chair bound dad, was the best possible dad.

Thanks for what you said Michael, I am here for my son all the time and since I am disabled and can't work I've made taking care of him my full time job. While it's very rewarding, it's frustrating at times because he knows how to get around my attempts at parenting, specifically giving him a time out. He will run to the bedroom and lock the door when he's done something bad and thinks it's funny that I can't catch him or force the door open.

Even so I wish I could do more for him. He's autistic and only 10, but he's grown up so fast, I remember a time when I was able to pick him up and hold him on my lap, not able to do that anymore, not enough lap for him to sit on...Hehehe. ;)

Pamster, I know how it feels deep in your heart it hurts, when you watch them out the window and their laughing, you want to be apart so much. But then they come in(I have 3) first thing they do is sit down and tell me all about. You see, since I got sick God has shown me another way for us to be close and we are. So when your sad and wishing you could do what they do, remember aleast we still have eyes to watch the beautiful things are sweet babies do and we can still love on them when they get done. I'll tell you something elese, when they have a problem or want to talk, they will come to you first, because guess what...you have the time!! God Bless You, Tammy72

I'm not actually "disabled," but I am a mom, and I have chronic med conditions that can suddenly and severely get in the way. I have been lucky so far in that I have had very few bad days, but when I did, particularly when my kids were really young, it was very difficult because it was necessary for my daughter, as young as 5 yo, to do things for me like get my glucose pills (for hypoglycemia) or look after her brother while I recovered from a nasty headache. It's easier now, since they're older, but my son is autistic, too, so there's always "excitement," if you know what I mean. :rolleyes:


LIZARD :)

Thank you Tammy & LIZARD. :D Not feeling as down as I was last night. Reading both your replies made me feel better. :)

What a rascal running away. I also remember my father trying to hit me with his crutch (which I deserved) I caught it in my hand, and "please." to my Dad. He never tried it again, and I tried not to make him want to after that.

Yeah he is a little rascal, he knows how to avoid consequences from Mom. But when I get Dad involved watch out, he knows better. ;) That sound slike it was a milestone moment between you and your Dad Michael, thanks for sharing it. :D

people assume and judge
 

just like the title says.even though ive been disabled since '91',i still let myself fall into guilt & shame. why,because if your disability cant be seen w/the naked eye upon sight,it cant be that bad,even seemingly well intentioned people say they understand,and then ask you something like'hey,i know someone who's hiring.now,if i had a leg missing or such,they would'nt do that.after so many years,you'd think society would be more informed about disabilities,the people who have them etc...if someone is jogging down the street and they are dressed well and clean appearance[me],why cant that bum work...ignorance!! raising my 13 yr. old by myself is what keeps me ALERT![OCD,ADHD,PTSD,MAJOR DEPRESSION,nervous breakdown in 91.eventually tried self medicating ,almost died of alcoholism[stay away from ism's]...i pray every day and try to remind myself,"dont quit 5 minutes before the miracle[which could be tomorrow ,next year or any moment now,one never knows.anyways,good to read your posts.yours truly,kennyjack.:confused:

PS
 

PS sorry for whining,you guys were so positive...have a great day...kennyjack:) :) :) :)

I have to admit you're right about the way people assume and judge those people with disabilities that can't easily be 'seen' it's not fair but our society seems to still place so much weight on appearances, it's just the way it is still unfortunately. I definitley feel for you KennyJack, I don't get that kind of judgements thankfully but I do get a lot of:

"Wow you get around really well, how do you do it?" or "My hat's off to you darlin' you are amazing..."

That is from total strangers when I go out into the world, usually I can see others looking at me getting around with admiration. I always tell the clerks when they ask, "Do you want help out with this?" I reply, "Nope, I got it down to a science, I am my own shopping cart." And then I take the bags and load up my lap holding the handles in one hand and using the other one and my foot I navigate to my car, sometimes it's awkward but I feel empowered to do this and proud I still can, you know?

It's not easy being disabled, and I have found that you should enjoy what things you still can DO and not dwell on the things you can't. That just leaves you feeling empty and bad inside. I'm sorry people treat you that way KennyJack, but at least you can talk about it here and people here won't treat you that way. ;) If you need to vent we're here for that too. ;)

I know I have terrible feelings of guilt because of my disability. I'm a lot like KennyJack in that my illness can't be seen from the outside, unless you look deeply into my eyes. But I live with constant pain and weakness, and I know it has caused my children to experience certain disappointments. I can't always make it to their ballgames or recitals, even though I try my best to get to as many as I can.

But like others have said, I spend more time with my children now than I ever did when I was "normal" and working. I listen to them and do things with them, and we have bonded in a way that is so much more special than what we had before. Even my seventeen-year-old son trusts me, and comes to me for long talks and advice.

But the one single thing that keeps bothering me, even though it probably sounds silly, is that I haven't been able to pick up my little girl and hold her since she was five. That was her age when I became ill. She's a very small statured girl, and she loves to be held. So even now she is always coming up with ways for it to seem like I'm holding her. She will get behind me and lean over my back and shoulders when I'm sitting, or stand on a step-stool and wrap her arms around me when I'm standing. And when she does this, she will put just a portion of her weight on me and say in that wonderful bright voice of hers that I am "really sort of holding her". I'd love to be able to pick her up just once, or give her a piggy-back ride. I know it would make her day.

Oh that is so sweet! I can appreciate that feeling Idealist, I am glad you posted about it. My son weighs too much to be picked up anymore at ten but he likes to lean on my lap such as it is and I put my arms around him as he balances on my one knee and thigh. I miss holding him, I nursed him until he was just shy of two because of the reports that breast feeding helps with preventing certain cancers and it runs in the family, so I wanted to give him the best start I could. I attribute a lot of his affectionate nature to the close binding we formed due to the nursing.

Sometimes when I look at him I still see the cute baby he once was and I miss holding him. It's a comforting feeling when I hold my arm around him on the couch and look over at him and see the baby he was, it's really a nice feeling. I know he liked being held a lot too, and he likes it when we sit on the couch with him like that. When he was a baby I could hardly put him down he'd cry to be picked up again. I know it's really a primal urge to want to hold our kids like that, so it's great that your daughter reconnects with you like that Idealist. I was sitting here seeing it in my mind as you described it. Thank you for posting, I really appreciate you sharing what you did. :)

Well,i feel like i am a big burdern on my daughter.
She ,of course says i'm not.Yet i feel as if i am!
I don't feel like walking around the mall anymore,just because it's fun to window shop.
I go to the store when i have to and get right back out!
I have a picture of us up on my fridge from one of those silly
photo booths.It's been 3 yrs since we have gone alone for fun!

We used to play around by poking one another and wrestling around..Well now she says she is afraid to touch me because there aren't many places where i don't hurt now!
We are VERY close and we hug all the time,but we don't play around like that anymore.
I had to stop the long bike rides we used to go out on...
When i am in one of my flares..She is my caretaker!!!She wont leave my side!!
I tell her all the time.I am suppose to be taking care of her.I worry that i am scarring her......
I don't know what i would do w/out her...
I just hope when she gets older she doesn't have resentments toward me.

I'm so sorry you're in so much pain ~KELLWANTSANSWERS~ I really do understand, but my son isn't at a point where he's taking care of me, he will push my wheelchair around out in public for me but that is more to keep him anchored to me then to really help me.

I'm so sorry you have so much pain, it's so hard to live with pain. I have chronic pain myself and though I take meds it doesn't get rid of all the pain. I hope you see a pain specialist for help ~KELLWANTSANSWERS~ because they are out there to help people like us. :)

I doubt your sweet daughter will resent you when she's older, she's going to love you no matter what. Just know that in your heart that she WANTS to help you and will always love you, nothing can change that. I understand about not wanting to window shop anymore and going to the stores is just for neccessities rather then for fun stuff or to window shop, I am like that too.

I hope you're having a pain free day today, and if you're not seeing someone for it maybe you can talk to your dr and get a referal, no one should have to be in pain 24-7, but there are many of us who are and it's a real shame. I really feel for you ~KELLWANTSANSWERS~.

Me and My children..
 

I am Laura. I have MS and a Congenital Heart Defect. I was 37 (yesterday);)
I am married. My kids are 14 and 6. The hardest thing for me is being tired and not being able to do alott with them.

Laura
Orlando Fl

Welcome Laura,

I am glad you posted. I understand feeling tired and not being able to do a lot with you kids. I wish I could do more with my son too, it's a hard feeling to accept. Welcome to NeuroTalk. :D

Like most everyone here, my endurance is practically nil...I'm more of a sprinter:p . But it seems as if everything that my son is interested in involves a field waaaaay out in the middle of nowhere, and having to climb a couple of berms to get to it. So the hardest part for me is just in arriving....the heart is willing, but the flesh is weak.:rolleyes:

I also have brief pangs of wanting to be able to run, chase, rough-house with my son....we've modified most of those to suit us, but I agree that it's not the same.

I also agree wholeheartedly with the comments about kids really just wanting our presence/time. If you talk to kids today, whether their parents are AB or otherwise, they'll tell you the same thing themselves. They just want us to be there.....accessible.....approachable. Those are the things that they'll always remember and value.

This is a good topic, Pamster. Thank you to everyone for sharing your stories...it's healing to share these things.:grouphug:

I agree with you that it's very healing to share our stories like this, HoosierMama. :) I wish I could talk with my son better, it's so hard to communicate sometimes because he's autistic, yet he is doing much better even so it's really hard to know if he really gets what his daddy and I say to him sometimes. MOST of the time I think he does, so it's really just a matter of him being able to communicate back to us.

I wish it was easier for him, but we accept that it's going to get better with time, I am just glad to know he's reading finally! That is a huge achievement and I know he is reading sight words because his teacher tells us so and that she thinks he's ready to move up to the next level acedemically. That was so encouraging to hear. :)

Just had to share that. ;) We saw her at walmart this weekend and she was tickled pink Jackie got to meet her four year old son and they interacted a bit, he gave my son a tootsie roll and Jackie thanked him. It was so sweet. It was wonderful that we got to see her and talk to her like that about his progress. :)

Hi, I'm Donna and I wanted to read this thread because I work as a advocate for both ab parents a disabled parents. But I found lots of you very inspiring. I wanted to tell Kelly that her daughter will always want
to do things for her.

THe reason is that she knows that she is appreciated, loved and that you
need her.

And Pamster, your son even though he is autistic, will always love you,
and want to please you. It shows in your writing about him. There will
come a day that he will want to b e a lot like Kelly's daughter.

And I am impressed by the other parents and kids too, just don't remember
their names. But you are setting good examples.

I have three boys with varying degrees of disabilities and I have to say
that in the last few years when I've had varying degrees of disabilities for
various times. When I've had dislocated bones, and concussions or post concussion syndromes, they have been there. My youngest has seizures
and he is always trying to learn the things to make my live even more
easier.

I am so glad that he is part of my life.

Donna

I know how you feel Donna, I am so happy that Jackie is a part of my life too, I would be so lonely without my little man in my life. :)

Yep, I can totally relate.

I have to admit. I am so pleased with all 3 of my boys anymore.

My oldest has grown so much, and I wanted to say that I feel so disabled
somedays. But I am not too the biggest degree, but the most important
is that my oldest is a productive man now, he has a emotional handicap,
Learning disablities, adhd and he was on SSI, now holds a good job for
a while. I have a neat young grandson who is 5 and I can say I wouldn't
have thought I'd be able to brag about this one years ago.

ITs so nice to be able too.

My middle one is a college student now.

Donna

My little guy is in fifth grade. They really grow up so fast. :) Thanks for posting Donna. :D

I homeschool my son. There are so many activities that if I am having a bad day we either don't go, or I attempt the activity but we have to leave early. He says I have become a grouch since I hurt my knee. Daddy helps make up for some of the things I cannot do.

We still attend park days. There is another mom there that has fibromyalgia (sp?) so she can tell if my day is just not working for me.

just bumping this up to say Hi and how are ya to Pamster :hug: and also so new members will find it, as this is a valuable thread :)

As we are getting ready for our kids to go back to school.

My middle son is going to his 2nd year of college. And my youngest is going to 10th grade. I'm working on getting him ready. My son's both have disabilities and I'm working through my central abnormallities that are finally getting some help.

I'm also learning to live through my asthma, and allergies. And my husband hasn't realized that I need to have lights and ways to get around in the night so I don't fall. He has a lot to learn.

He is a overgrown kid and needs to realize that just because he thinks he does so much that doesn't mean he does it all.

Donna

Hi Christine, Chemar & Donna,

Things are going well this year for Jackie in fifth grade, he got back into the more acedemic class, but I have a feeling it won't last, he's gotten a few bad reports and it's just a matter of time before he fristrates them too much and they push him back into the lower functioning class. I just wish there were more things I could do because it feels so helpless to just send him in and never know exactly what's going on with him at school. I wish he could tell me what's happening there. Oh well, other then that worry things are going well. He just turned eleven and is very happy so who could ask for more? Other then he learn to read and write better. ;) :)

Pam

When they start talking about putting him back in the low functioning
classes its time to say. No, I want to work on keeping him in the
higher functioning classes. Because he needs something to motivate
him to continue to succeed.

Maybe a suggestion is to find him someone to go with him to these
classes and to help him more. Also you might suggest they help
adapt his work more.

I would just tell them your available to meet more often to find
out how you can help.

That until they and you as a team have met more to work on this.
You aren't willing to put him back in the lower functioning classes.

Donna

I agree 100% Donna, it's not fair to him to just put him back into the lower functioning class just to make their lives easier, the thing is they didn't really explain to me that was what happened the last time when they put him in the lower class, they just DID it and told me they were separating him from another student that was influencing him to do bad things.

I don't know how much I trust them anymore after that, because it really wasn't right to hear from his teacher that this is what went on, that he'd been pushed back and it was because of his behavior. Well his behavior isn't any easier but it's not violent anymore. Thankfully. :)

Hi Pam,

This is a great thread. I read it from the beginning. I am glad that your feelings of guilt have lessened and that you've found some balance in your view of your role as mother. It doesn't matter what our limitations are mothers will always struggle with ourselves and what we did or didn't give our kids. Its this conflict, I believe that keeps us focused and striving to meet the varied needs of our children as best we can.

We have a few things in common. I have MS and was in a wheelchair for a while, and raising a 10 year old boy with autism spectrum disorder. I can relate to your struggle with intereacting with your son both physically and in terms of communication.

I just wanted to chime and let you know you are not alone with your difficulties. Keep plugging away, your deturmination will be empowering to your son, and keep you going.

Kennyjack, as far as I am concerned we are all entitled to have a fit and fall in it, just don't stay there for long. I agree with you as far as unseen disabilities. That makes it a lot harder. I have RSD and there are days I am good and others not so good. I am good at concealing it to others, not hard when you only go out when you feel like you can. Even hard for my parents to understand, I don't believe they get it either. My husband and 15 yr old son are great. Although my son sometimes has a hard time with it, who can blame him, there are days I have a hard time also. Let me be honest, there are days I have a fit and fall in it but eventually I pick myself up, dust myself off and move on...well, until the next time. LOL We are just reacting normally to our stressful lives and lets face it, it is hard to not have someone fully understand how we feel. It leads us to feel disconnected, like we are on the outside looking in. We are our own worst critics, we sure don't need it from friends, relatives, or strangers. We are all doing the best we can and I'd like to see how they would handle it if the shoe was on the other foot. Our life is hard enough without the so called "help" some want to give us. But I consider myself a "can do' type of person and I have no trouble spotting stupidity or ignorance, if someone continually brings me down I just move on. Life is too short to surround ourselves with people who make us feel bad, there are others who make our heart smile. Ignorance is forgiveable but stupidity is another thing. My favorite saying is "Lord, save me from stupid". Keep praying, have faith and don't be so hard on yourself. Like my grandma always told me, "Life is good, if you don't let it wear you down". May the Lord save you from stuipd also. Lol Marilyn

its the lack of frustration cause i understand cause my mum has been
disabled for about 14 or 15years now.

Hi, everybody:

I am a disabled single mother with an adopted two-year-old baby boy. I have a police officer boyfriend, but he is still in the U.S. and he is trying to come to French Polynesia so the three of us can live together, love and support each other, and just be happy together.

My main disabilities are generalized internal chronic RSD, hypothyroiditis, epilepsy, and asthma. To me, there are five hardest parts to being disabled and to being a parent:

1) It breaks my heart sooo much to see my two-year-old baby boy suffering physically and emotionally from such a horrible disability as Cystic Fibrosis. He almost died so many times I lost count. Fortunately, I was able to get him a transplant of one heart, two lungs, and two kidneys. I was told by the surgeons who operated on him that it was very rare for someone his age to get the transplants on time, that is, before his disability takes him to a better world.

2) I cannot always do all the activities I would want to do with my little treasure, whether it is because of his transplants or because of my own disabilities.

3) I do not always know how to reassure my baby when he sees me suffering physically and emotionally so much because of my disabilities, especially my generalized internal chronic RSD and hypothyroiditis. Epilepsy and asthma are not so hard on me.

4) I and my son feel rejected by some non-disabled parents and their kids, as if I and my son were going to contaminate them, even though none of our disabilities are contagious.

5) I have to live, 24 hours a day and 365 days a year, in fear that CPS will come and steal my child.

Another thing that is bad, is having a (ex)spouse who treats us like a leper or something not worth helping. I had a seizure in bed one morning. I had already told my (ex)wife what to expect and do if I had seizure. All she did was sit and stare. She didn't help me at all!!!!!:mad: A year after she left me, she told me that she had wished my disabilities would "just go away". It was then, that I decided to divorce her instead of trying to reconcile.

On top of that, four years after I divorced her, she finally admitted she was disabled, which I had known for more than ten years. When I had tried to get a psychological evaluation done on her prior to the separation, she refused. Not to see if she was crazy or anything like that. But to get a further understanding of why she behaved the way she did. When I divorced her, my parents, step-mother, her mother and maternal grandparents were there. Right after it was finalized, my (ex)wife started running around to every family member present, individually, crying like a baby. It was behavior like that, that I had to deal with for four years(before the separation). She was in denial about my health problems, and her own!!!!

HI I am a single mom and have had RSD since 1997. I have whole body RSD so it is hard for me some times to type and write ..I have 3 children I have raised my son is 23 and my other son is 19 I have a daughter who is 16. she is a great deal of help to me. there are days I cant get out of bed. I was in a wheel chair for 2 years and worked hard to get out. but now have a broken scs and trying to find new pain dr cause I have moved ... so I am with out pain medication also ... I am in a lot of pain but .. as far as spending time with my children they help me and come to me to talk, because we were close when they were growing up and still are.. just take one day at a time and he will see how much you love him and wont be such as rascal all the time

I wish on the feel good days, that they would be every day. I have two daughters, ages 5 and 8. I feel horrible that I cannot do everything that I attempt with them. My husband has two sons from a recent marriage, ages 9 and 7. They all have each other to play with but there are days I want to jump on the trampoline, bike ride, and so on. I am able to do those things few and far between :(

Hardest part of being disabled. Finally realizing that I may never "get better"... Losing the use of my "good" leg for crutching from spinal damage, and that I need to fight for a specialized wheelchair so I don't end up living life in bed.

People see nothing obvious from the outside, they have no idea what's going on inside. Doctors that ignore obvious signs and symptoms and give poor treatment. Fighting for good medical care is exhausting sometimes.

By comparison, there is no hard part of being a parent. The level of "hard" is much easier for me. Sure, it's tough to tell your kid you can't fully participate physically, and that you can't always be at the events. But there are so many other opportunities that make up for it, like my kid knows that he can always find me for a cuddle, to read a book, play Legos/magformers, pillow huts, or anything else you can imagine doing on a flat surface. Plus I am raising a kid with amazing compassion for others.

For me it was not noticing my daughters mental health going down hill.
I too have hidden disability from spinal injuries and a brain injury from a car accident.
Age 8 she became carer. Over the next 8 years I gradually regained function, as I got better she got worse.
She was losing her identity she felt. She was scared to let go of that mothering role.
I didn't notice she was cutting herself. It took a long time in therapy to help her through. She was diagnosed with PTSD. I caused that and I felt rotten.
She is happy and intelligent and in 2 nod year at uni studying forensic bio Physcology.
The plus point was being here for my 3 children. Being able to spend time with them, as long as I was not fatigued.
My children have missed out on sleepovers, parties, concerts even trips that I forgot to fill paperwork in for, or pay for!
Poor memory plus poor executive control makes me a bit of a loose cannon. I can be embarrassing without realising. I don't have the filter to stop what you think falling out of your mouth, it can get me in bother and cost me friendships.
I wish I had found this place years ago!