Giving up a child?

[coloradochick]

Oh oesdog I know exactly what your feeling, going through, and how it just tears you up as you go between severe guilt to excitement for you and for your son. My son is 12 and sounds much like your son. He has autism, severe cognitive delays that get worse all the time, and a seizure disorder. Last Friday we had genetic testing done for Dravets Syndrome. Life is very, very difficult. Yesterday when I got him off the bus and wouldn't let him get into my husbands semi truck he proceeded to kick me, head butt me, call me names, etc. I'm crying out of frustration, he's crying. 10 minutes later he's fine but really tired, which I think is why he does this to begin with mixed with all the physical and emotional problems and all the meds he's on it makes for a very mixed up little boy who goes from being sweet as tea to mad as a little bantam roo . We've been through brain surgery (no change), years of week long monitorings, and he has the VNS which we turned back on Friday after many years of being off. Tried every med available, etc.....

We'll be making this decision in years to come and I know your pain. It does feel like we are giving our children up because of the type of children they are. And then in the same breath the excitement grown because yes they'll have some new people in their lives and new experiences but also it means a HUGE break for us as parents. My husband and I haven't slept in the same room in 10 years since one of us sleeps with Colt to make sure his face isn't burried in the bed when is seizes. Makes for a very tough married life along with everything else. Stay strong and take comfort that you gave him and still will all your love for 24 years and now it's time for others to get the chance to love him also. And it sounds like this place is a beautiful, wonderful place for our children. I wish we had a place like that. It would make that move when the time comes sooo much easier I would think.

Hugs to you and your sons.

Cara

 

[oesdog]

Oh oesdog I know exactly what your feeling, going through, and how it just tears you up as you go between severe guilt to excitement for you and for your son. My son is 12 and sounds much like your son. He has autism, severe cognitive delays that get worse all the time, and a seizure disorder. Last Friday we had genetic testing done for Dravets Syndrome. Life is very, very difficult. Yesterday when I got him off the bus and wouldn't let him get into my husbands semi truck he proceeded to kick me, head butt me, call me names, etc. I'm crying out of frustration, he's crying. 10 minutes later he's fine but really tired, which I think is why he does this to begin with mixed with all the physical and emotional problems and all the meds he's on it makes for a very mixed up little boy who goes from being sweet as tea to mad as a little bantam roo . We've been through brain surgery (no change), years of week long monitorings, and he has the VNS which we turned back on Friday after many years of being off. Tried every med available, etc.....

We'll be making this decision in years to come and I know your pain. It does feel like we are giving our children up because of the type of children they are. And then in the same breath the excitement grown because yes they'll have some new people in their lives and new experiences but also it means a HUGE break for us as parents. My husband and I haven't slept in the same room in 10 years since one of us sleeps with Colt to make sure his face isn't burried in the bed when is seizes. Makes for a very tough married life along with everything else. Stay strong and take comfort that you gave him and still will all your love for 24 years and now it's time for others to get the chance to love him also. And it sounds like this place is a beautiful, wonderful place for our children. I wish we had a place like that. It would make that move when the time comes sooo much easier I would think.

Hugs to you and your sons.

Cara

- I know how it feels to try to care for a boy that has siesures in the night and how having a disabled child affects the whole family especially your marriage. Very very hard work. Some nights I can;t go into our son because he attacks me so DH has to do that and he is recovering from heart issues - had heart surgery after a heart attack 2yrs ago and is not recovering well I think due to all the stress and care issues. I hope that we get to see this place and they have the funding and it is the right place. DH can;t go on and neither can I at this point. Wish I could drop danny off today!!!! We are sooo tired. Dan slept better last night but now his battery is charged he wont sleep again for 3/4 nights and then he doesn;t sleep more than 4 hrs straight. Like yourselves we cannot leave him because of increased fits. I am very worried this will all be just a pipe dream and we wont get him in there. It is crazy I worry he will go and I worry he wont go???????? I am at the end.

Oesdog

 

[Chic-n-farmer]

My heart goes out to you. You have done the best you possibly could for longer than most people could. I pray that you can have the peace you deserve in this difficult decision. I admire you and feel that you were chosen for this, by God, for your caring heart.

 

[oesdog]

 

[dinahmoe]

i pray that this all works out best for everyone.

 

[Kelly G]

I'm on the outside, looking in...and I send you the biggest hug!

This may come accross as trite - and I SO don't mean it that way AT ALL!

But is it at all possible that what you're going through is much like many of us face as our nest gets emptier and emptier as each year goes by? Just like us your kids are potentially leaving home?? Many of the the things you've said mirror what my husband and I seem to be going through - worry about our kids future, their well-being, and how they will fare when we aren't here to protect them.

Anyway I do not want to minimize what you're going through - only to point out that maybe some of it is not so differnet than from what others go through...and maybe you won't feel so alone.

...and send you a big hug!

 

[oesdog]

I'm on the outside, looking in...and I send you the biggest hug!

This may come accross as trite - and I SO don't mean it that way AT ALL!

But is it at all possible that what you're going through is much like many of us face as our nest gets emptier and emptier as each year goes by? Just like us your kids are potentially leaving home?? Many of the the things you've said mirror what my husband and I seem to be going through - worry about our kids future, their well-being, and how they will fare when we aren't here to protect them.

Anyway I do not want to minimize what you're going through - only to point out that maybe some of it is not so differnet than from what others go through...and maybe you won't feel so alone.

...and send you a big hug!

As a parent of 2 "normal kids" and 2 disabled kids it is I assure you a very, very different thing. You cannot compare the two. I know your trying to be kind and helpful. I will try as best I can to explain.

letting go of a child who has reached physical and mental maturity who has the knowledge, ability and potential to look after themselves out in the world is a good thing!!!! It is a positive end result of the work us parents have put into their development. They will go on and learn to survive away from us!!! This is however as well as being a positive thing also a painful thing because as parents we have in affect worked ourselves out of a job. So in a way we feel like were not needed and we are not needed in the way we once were when these children were little. It also marks the end of the family unit we as parents have created and thus we feel "empty nest syndrome" Often too we can get a little depressed as we come to terms with this transition. Sometimes it comes up before we know when we drop our child at University and come home to an empty bedroom. Or when our child decides it is time to move to a flat away from home. These are temporary feelings for us as : With the death of one family comes the new beginning of another / maybe even several if we have more than one child. These children will go on to create family units of their own and before we know it we are grandparents and the toys come back out !!!! In order for a flower to shed its seeds it must die and this is the same with a family. For our normal children to grow and thrive our family unit must end. That is normal and good!!!!!! But as you point out also traumatic and painful for a time. I know because I have a boy of 27yrs and a girl of 23yrs who have gone through this. I am also now a grandmother and this certainly helps to heal the grief of the loss of our own family unit as I see theirs start to grow bear fruit and thrive.

With a disabled child this never happens. There will never be the secret hopes and dreams that you hold in your heart for their future. They will never do the things we did. They will never Learn to drive, go on a first date, graduate uni and pass exams, meet the right partner, get married or have a family. Their lives are totally different and our job is never done because they will never mature and grow and develop into secure stable and interdependent functioning adults. They will always need the nest!! Our nest so our family unit that should naturally end for these seeds to land and grow will never happen. Our role as parents in “that way” never ever ends. So when we get to the point of not coping we have to find another “nest” We have to like the cuckoo borrow someone else’s skills to continue to raise our chicks that will never fly. That wonderful beautiful painful feeling you are having over your child leaving home – that grief of work completed is something to cherish!!! And so as you stand and watch your chicks take flight – For those of us with damaged , disabled children remember that day will never come.

So when you go to your child’s room and cry because they moved out or went to Uni – praise God because THEY CAN FLY!!!!!!! You did it !!!!! we will never be where you are!!!!! Our chicks will never fly and the “flower nest” of our family unit will never quite shed all its seeds.

Oesdog

 

[Kelly G]

Oesdog - thank you for a beautiful, well though-out post...you deserve all the warmth and compassion each of us has to offer. I can't even begin to wrap my head around the struggles you have to face.

Intellectually, I know how different life is for parents of special-needs kids...I empathize with your story (been following the thread since you started it) and felt compelled to reach out so you wouldn't feel alone. Just know that's where my post comes from - not from wanting to minimize your struggles, but from wanting to reach out to you.

I have subscribed to this thread and will watch for your updates...I wish for you all the peace and comfort of knowing your children are safe, happy, and where their needs are met. As parents, I think we all share those desires....so maybe that's where our common ground is - we all want our children safe and happy in an environment where their needs are met.

Big hug to you and your family...

 

[EweSheep]

Oesdog Major hugs to you!!!

I have read the posts in the past about your sons. I think your deciding to transferring their care to this facility is the best thing for you, your family and your sons. I think it would be a good thing if both boys could go together and start this new adventure in their lives. It might help them both to feel like they have each other.

I know it will be hard for you and there will be many days that you will think you have done the wrong thing. But they will need care all their lives and if you can be there for them at this point, you can help them transition in to their adulthoods. Your health and your husbands have been greatly affected by the stress/work of caring for them and I truly think that the best thing that can happen is you can learn to enjoy them as adult children in a new way with out the actual work of their daily physical care.

more hugs!

I agree with this statement! It is NEVER easy to do this but it will give you and your husband AND your son peace!

 

[Muggsmagee]

I can not add words of wisdom here, but want you to know we all wish you the best, and positive thoughts are sent your way.

Warmest regards,
Meagan