How can we help each other not to feel the guilt associated with special needs parenting?

I’ve been discussing something along these lines today, on the Lost and Tired Facebook page.  The  question I asked was this: Do you ever feel like you’ve let your child down?

The response was really good and everyone is being

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really honest. 

Something else that got brought up in the course of conversation was the quilt associated with special needs parenting. The vast majority admit to feeling guilty or responsible for what their kids go through.

This got me thinking.  How can we help each other to not feel a lot of this needless guilt?

Speaking for myself, I feel a tremendous amount of guilt for what my boys have to go through. I realize that it’s not really my fault but it doesn’t really help me.  I think that as parents, we want the very best for our kids.  If something comes up along the way, like Autism, we tend to blame ourselves.

No one chooses for their child to experience unpleasant things or to struggle through life. 

I can say with the utmost certainty that most, if not all parents would take away anything that seems to burden their child.  I know that I would trade places with my kids in a heartbeat, if that meant their loves would be easier.

The question is, How can we help each other not to feel the guilt associated with special needs parenting?

This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos. I know how to spell but auto-correct hates me.  😉

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.


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rmagliozzi

I often feel guilty about the past. My oldest son got a late autism diagnosis because I just thought he had delays and severe ADHD. He missed out on years of early intervention because I listened to family who kept insisting he was normal. He did not get any interventions until 4.5 years.We didn’t even discover he was autistic until age 6. I often wished I had said “to hell with everybody” and taken him to a specialist at 2 years old, when I first suspected there was something wrong. Now I do whatever I can to help him. I leave no stone unturned to figure out his medical issues and find effective treatments, and to find him the right interventions he needs. I wonder if I will ever stop making up for lost time.

lostandtired

@rmagliozzi you know something, I can completely relate. I’m always trying to make up for things that in hindsight I regret. The problem with living in the past is that you miss out on today. Hang in there. 🙂

Marianne Sandling

I do, rather often.  Here’s a good example.  We live in an apartment building.  Our landlord wants go get rid of us.  They have, ever since I had to file with the City’s office of Civil Rights, since they tried to evict me BECAUSE of my disabled child.  This caused them to dislike me more, and have tried and tried to get rid of us.
Our neighbors below us complain rather often of my son’s noise… walking through the house, or, if someone knocks on the door unexpectedly, running from whereever he is to our bed, to hide.  I get that the neighbors don’t like the noise, but we’ve done a lot to try to quelch it, from changing his bed time, to his routine, and everything in between.Well recently, our older son (for lack of a better way to explain things) was kidnapped by his father.  It’s a long story, but his father took him for his regular visit, and refused to return him.  This was in February of 2012. We haven’t seen him since then.  Well my son’s anxiety has been getting worse lately, and one night, he woke up having a nightmare that he’d be taken too.  He RAN through the house, and his fear, was stomping.  It was 3am. I couldn’t get him to calm down.  Nothing was working.   After about 20 minutes, I was SO worried that the lady downstairs would complain, leaving us with another eviction notice, that I grabbed him to the bed and held him.  Against his will.  He swung at me, and kicked at me and screamed.  I begged him to be quiet.  I’ve got bruises on my shins from that night.
Your question, Do I feel like I’ve let my child down?  Yes.  I feel inadaquate, as a parent, to deal with his issues.  I worry every day that because I can’t handle him, am I doing him a disservice?  There were times, when he was about 3, that I even convinced myself perhaps it would be better if I’d had him commited to the Children’s Hospital, psych ward, because I didn’t know where else to turn.
My son has oppositional defiance disorder, on top of his other diagnosis.  Having a child who beats you up constantly is the most heartbreaking thing in the world for a parent, because you can get so angry…but there’s nothing you can do.
My son has gotten better over the years.  His “outbreak” the other night was fueled by his nightmare.  I get that.  It doesn’t make it easier to bear.
How do we help eachother not to feel the guilt?  I don’t think that’s possible.  The best we can hope for is to help eachother to UNDERSTAND WHY we’re feeling guilty, and to accept that these things are not our fault, that we couldn’t control our child’s issues any more than we could control the weather.
I know that nothing anyone says will make me feel less guilty for the other night.  The best I can hope for, is some way, to deal with it better the next time it happens.
This is one reason why on my other comment (on http://lostandtired.com/2013/02/16/i-need-feedback-so-i-can-help/) the tablet idea was so important… there are so many apps that could help out when my son’s feeling so much, and unable to share it with words.  I know, because I’ve seen some of them.  
Thanks for listening… again.

lostandtired

@Marianne Sandling again… I’m so impressed with your honesty. Thank you for sharing that. Please remember that you are human. 🙂

Marianne Sandling

@lostandtired  @Marianne Thank you for giving me an opportunity to share it.  It’s not something that I shared easy, and certainly not something I’ve shared before.   It IS hard, being a parent, but having a child with special needs is 10 times more difficult (and rewarding at times!) but having a place to share it, where you don’t feel like an outcast is important.  I rarely share things like this, because of how easy it is for others to point fingers, and rant about your decisions (similar to the way people did on your pch post…)I do try to remember I’m human, that I make mistakes, and that, even though I often feel like a failure (especially at Christmas time) I’m the best mother I can be to my kids.

lostandtired

@Marianne Sandling @Marianne that’s all anyone can ask. 🙂

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