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We shed many tears last night.......

Posted by on Jul. 25, 2013 at 12:24 AM
  • 15 Replies
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I know it's something that no one likes to think or talk about but let's face it.......we all have to answer that call home to glory some day. We try to be responsible parents and prepare for the what if's in life. Our family motto is "we all we got" because we are literally all that we have. We have no family/friend support system and no one in this world that we trust with our kids especially our Special K because he may never be able to survive in this world alone. Do any of you other moms every deal with this feeling that you are afraid to die because of what may happen to your special needs child? I know that no parent wants to out live their child but I honestly feel that it's the only way that my soul could ever rest in peace. Am I wrong for feeling this way? I know that none of us know the time nor the hour we will receive that call but I am fear for my sons well being and I don't want his little brother to have to give up his life and his dreams to care for his big brother.
by on Jul. 25, 2013 at 12:24 AM
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lucasmadre
by Kari on Jul. 25, 2013 at 7:56 AM
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Honey, no one knows what the future holds. You have to trust that things will work out the way they will and let go of the fear as best you can. Your special boy may be more capable than you think and if not there are places out there to help children like him when he becomes an adult. Try to give your heart a break and live in the now for a while. No one can see ahead...

That being said of course I understand your fears. You love your boys and want the best for both of them. Things have a way of working out, we all have our own path to walk. Your boys have theirs. If your younger son has to look after his big brother it doesn't mean that he will have to give up his dreams. If he marries a good woman like his mom he will be fine...you will see. Will say a prayer that you are feeling more peaceful. XO

JTMOM422
by Brenda on Jul. 25, 2013 at 8:45 AM
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I too have these same fears. I don't want my daughter to grow up being responsible for her brother. I get scared at the thought that he could end up on the streets or something worse. I have shared these fears with my family and my one sister has 6 kids and she said no matter what there would always be someone to take care of my son. No one would let anything happen to him. Even with her saying that the little bit of doubt still sneaks up on me. There was an article I read somewhere about Autism Speaks or someone they are affiliated with trying to build homes for our children when they become adults. Sorry I can't remember the story all that much. Too early and no coffee yet. Check out the site and see if you can find the story. I think with the numbers growing more and more people are starting to understand that our kids need a place of their own to live their lives with assistance or little assistance. Hope you get to feeling better about this momma.

aidensmomma508
by Wendy on Jul. 25, 2013 at 8:57 AM

Yes it's really scary my son has severe autism who will care for him when were gone? The state? Wow ya that sucks

SugarbearNHoney
by Member on Jul. 25, 2013 at 9:24 AM

 I recently read the same article about these homes being built. And while may help to ease the worrying just a little, the thought alone is just very unsettling.


Quoting JTMOM422:

I too have these same fears. I don't want my daughter to grow up being responsible for her brother. I get scared at the thought that he could end up on the streets or something worse. I have shared these fears with my family and my one sister has 6 kids and she said no matter what there would always be someone to take care of my son. No one would let anything happen to him. Even with her saying that the little bit of doubt still sneaks up on me. There was an article I read somewhere about Autism Speaks or someone they are affiliated with trying to build homes for our children when they become adults. Sorry I can't remember the story all that much. Too early and no coffee yet. Check out the site and see if you can find the story. I think with the numbers growing more and more people are starting to understand that our kids need a place of their own to live their lives with assistance or little assistance. Hope you get to feeling better about this momma.


 

SugarbearNHoney
by Member on Jul. 25, 2013 at 9:27 AM

 Exactly! The state will not poperly care for our special ones. I have read te stories about nursing homes and facilities abuse and neglect. Horrible!


Quoting aidensmomma508:

Yes it's really scary my son has severe autism who will care for him when were gone? The state? Wow ya that sucks


 

JTMOM422
by Brenda on Jul. 25, 2013 at 9:33 AM

I agree the thought is unsettling. But I think the article shows that acceptance is coming for our children. I know that it doesn't stop the worrying in us moms but I don't think anything could ever do that. We are always in protective mode when it comes to our children.

Quoting SugarbearNHoney:

 I recently read the same article about these homes being built. And while may help to ease the worrying just a little, the thought alone is just very unsettling.


Quoting JTMOM422:

I too have these same fears. I don't want my daughter to grow up being responsible for her brother. I get scared at the thought that he could end up on the streets or something worse. I have shared these fears with my family and my one sister has 6 kids and she said no matter what there would always be someone to take care of my son. No one would let anything happen to him. Even with her saying that the little bit of doubt still sneaks up on me. There was an article I read somewhere about Autism Speaks or someone they are affiliated with trying to build homes for our children when they become adults. Sorry I can't remember the story all that much. Too early and no coffee yet. Check out the site and see if you can find the story. I think with the numbers growing more and more people are starting to understand that our kids need a place of their own to live their lives with assistance or little assistance. Hope you get to feeling better about this momma.




Momof4AEMW
by Silver Member on Jul. 25, 2013 at 9:36 AM

Yes, honestly that is what bothers me most about the kids'diagnosis.  It's not the delays, or all the extra daily stress, worries, decisions, it's what happens when I'm no longer here to do all of this for them.  What if the NT siblings won't be able to or willing to step in, what then.  You do everything while you are here to give them the best chances, keep them safe, let them grow.  And what happens when we are gone.  I know you can set up trusts, and there are places for them to go.  But it isn't necessarily the place and the opportunity you wanted for them.  I try not to think of this, but the reality is that we never know.  It is probably my biggest fear of having 2 permanently disabled SN kiddos.  About everything else I can some how find the positive in and that gets me through the crazy.  But me being gone to not take care of the kids, I just can't see the positive for them or for me.

Jenibob
by Bronze Member on Jul. 25, 2013 at 10:13 AM

This is one area I choose to turn to my faith strongly.  This is one area that I put on "rose colored glasses" and choose to believe nothing but positive outcomes.  That's not to say I sit by and do nothing and "hope for the best."

I'm on the look out for good services & programs in my area. Thankfully we have a great informal support system of friends, family, church.  My son constantly surprises me with things he is capable of doing and I choose to believe he will continue to excell when I'm gone.  I also feel he can and will do more than I give him credit for.


I would be lieing to say that I don't worry about it.  But I've learned I can't get stuck there.  I've given that worry over to God.  I do the best I can now in terms of planning and preparing and accept when that day comes... I did all I could and now it will be what it's going to be.  (But in my mind I visualize it's good, way good for my son)

Breathe Mom.  It will be ok someway, somehow, someday :)

Hang in there.

TheJerseyGirl
by Michele on Jul. 25, 2013 at 3:16 PM

 I have 3 kids and worry myself to death over ALL of their futures, but especially D. My oldest knows I am trying my darndest to make sure D can be with him and never be a burden financially...He truly has the love and compassion for his brother that makes me feel so good about the day I'm not here...I just pray it's not for many many years.

NiyasMom1
by Bronze Member on Jul. 25, 2013 at 4:02 PM
1 mom liked this
I agree you never stop worrying about your kids, special needs or not, but there is always more worry for our special little ones because there are true dangers that they face. I pray and believe that all will work out for the best and I've also expressed to my older daughter my concerns and feel secure that she will care for her after I've moved on. I've also consulted with a financial planner to ensure that the financial burden won't be hers to carry. Pray and plan, that's all we can do. Things will work out, they always do.


Quoting TheJerseyGirl:

 I have 3 kids and worry myself to death over ALL of their futures, but especially D. My oldest knows I am trying my darndest to make sure D can be with him and never be a burden financially...He truly has the love and compassion for his brother that makes me feel so good about the day I'm not here...I just pray it's not for many many years.


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