Giving up a child?

[Armywifeandmama]

I had a son who passed away at almost 4 years old who had quadreplegia cerebral palsy,epilepcy,profound mental retardation,100% g tube fed, 100% nonverbal/immobile. I loved every single second I spent taking care of that child and I have no doubt I am a more patient accepting mother ( and person in general) because of those years I got to spend with him. Having said that I honestly don't think anyone could ever understand the toll that takes on a person. The amount of care needs, how much that affects the entire family's life, how many sacrifices must be made. I know even at 4yrs it was an every day 24 hrs a day 7 days a week non stop thing. I slept on the floor by his crib in case he threw up so he wouldn't choke. He was tube fed 24 hrs a day but the machines would make him throw up all day every day so sleeping wasn't an option. He had therapies all day every day. I would do it again. We are in the process of a Downs Syndrome adoption. I wouldn't fault you for either decision. You have obviously done a wonderful job of keeping him home and taking care of him all these years. It's very hard but I also think giving him up or letting him live elsewhere will most likely be equally hard emotionally so it's definitly alot to weigh. Good luck!!

 

[oesdog]

I had a son who passed away at almost 4 years old who had quadreplegia cerebral palsy,epilepcy,profound mental retardation,100% g tube fed, 100% nonverbal/immobile. I loved every single second I spent taking care of that child and I have no doubt I am a more patient accepting mother ( and person in general) because of those years I got to spend with him. Having said that I honestly don't think anyone could ever understand the toll that takes on a person. The amount of care needs, how much that affects the entire family's life, how many sacrifices must be made. I know even at 4yrs it was an every day 24 hrs a day 7 days a week non stop thing. I slept on the floor by his crib in case he threw up so he wouldn't choke. He was tube fed 24 hrs a day but the machines would make him throw up all day every day so sleeping wasn't an option. He had therapies all day every day. I would do it again. We are in the process of a Downs Syndrome adoption. I wouldn't fault you for either decision. You have obviously done a wonderful job of keeping him home and taking care of him all these years. It's very hard but I also think giving him up or letting him live elsewhere will most likely be equally hard emotionally so it's definitly alot to weigh. Good luck!!

Yes -

I feel so much for you. I am lucky so lucky my son is here and alive and I am able to care for him right now. You have been through so much and I do empathise with so much of what you discribe. How we have had to "sleep on the floor" incase our boy has seizures in status and /or chokes because he is sick or his heart fails from repeated seizures. 24/7 none stop! I have had my boy 20 years longer than you had yours. It is hard for me because my life has been nothing but revolved around his needs and care. But I see us Dh and I getting older and not able to do all we need to do for him especially since Dh had the heart issues. Caring for an adult with disabilities is a lot different because you have to think on body size, and how that affects your ability to feed clean and manage their needs. It sure makes things a deal harder. You are right about the mixed emotions as it is harder to let him go than to keep him!!! I know one day I will have to though because we will be too old and unwell to do all the things he needs. I don;t want to be into my 80s and leave a 45yr old crying for him Mom because I didn;t "get this" in time.
I know you will understand what I am saying. I know if your boy had of lived you would be doing these same things - wondering what to do in your heart for the best. I am so sorry you are not where I am and yet also glad that your not. In the same way I am mixed up about getting our lad another perminant home.

All hard emotions
Just for the record - If the good lord had told me your going to have to have a disabled child now chose which disability? - I would choose Down syndrome everytime!!!!!!! Wonderful loving kids with so much to give and a good sence of independance too!!!!!!! I hope and trust all goes well for you!
Oesdog

 

[oesdog]

Just so you all know
- Social services did it again. They phoned after 5pm tonight to tell us that the visit to the care centre tomorrow is off!!!!!!!!
The excuse is that the team leader there is out doing community assesments????? Why didn;t they tell us a week ago and make a new appointment and why did this team leader woman arrange a visitation when clearly she was not available???? ALso in the whole of the entire restbite care unit there is NO ONE available to show us around??????? Or even chat to us about what they offer????

I guess my heart is sinking because I know this place is off the radar as well and probably by the looks of this and the late cancillation it probably was never going to be a viable option from Social services anyhow. So we are back with nothing. THey did what they always do - lead us up a garden path! Give us unrealistic hopes and nothing comes of it all. THERE IS NOTHING OUT THERE AND NO FUNDING.
Tonight Danny grabed me again and pulled my hair out at the roots. Yesterday he grabbed me so hard he left a nasty bruise on my side. I have also been badly bitten in the last few days.

I guess this is going to be it for us . We have no choice but to carry on best we can. I don;t want him in a lock up or an old folks home - I just want him to be able to have a quality of life in a safe secure unit with young disabled folk like himself. It isn;t much to ask and I know it is not unreasonable. After all he goes to Day care every day and the staff there cope really well with him. They have even offered to go into a care unit and show them how to deal with Danny. But still we get this endless brick wall service.

Care in the community is a DIY job.
- not sure anyone will read this but I wanted you all to know the second place looks like its a none runner too.

I am very depressed. Oesdog

 

[coloradochick]

What the heck!!!! I'm feeling your hurt and anger and it just makes me even angrier. I'll tell you, our programs here are not much better. Or I should say here in the Denver metro area the "people" they ahve working at these gov't jobs have no sense of people skills or work ethic for that matter. The message you ALWAYS get when you call say they'll call back within 24 hours HA! never happens. They never call back until you call and leave a nasty, angry message on their line and tell them that you're calling the higher ups next. THAT'S when you get a call back and they still don't know what to say to you. For Colton's medicaid I get no less than 3 mailings from 3 different people to tell me that his application from "2006" has been denied or accepted. We're now in 2012 people!!! Anyways, I know your pain and your anger at the rediculousness of it all. I pray that you get some answers and answers that you're wanting. Know that we are all rooting for you, your husband, and most of all your son.

Cara

 

[Knock Kneed Hen]

I only just read your thread today...well, not all of it, but I've met you on another thread so I'm familiar with your story.

I had a family member that was in the same position as your Danny. Her family kept her at home and she did alright.
Her mother died and it was difficult for the entire family. When her father talked of putting her in a live- in facility I was
outraged! How could he?!! Well, that was some 20+ years ago. I now know that I was being selfish. Just a couple of
years ago her father found a home for her as she's now 50 and he's over 90. She's doing beautifully. She has a job,
friends, social events. . . it should have been done a long time ago. I feel guilty for my part in having kept it from happening.

The family put her on the list when her mother died 24 yrs. ago. The home contacted the family some years later to say
there would be an opening but of course, that's when we all protested. It was only just recently that the home had
availability again. What I'm telling you here is that you ARE making the best decision for Danny and not to give up hope.
Perhaps it's not a possibility right this second, but something may open up down the road. Be a thorn in their side. Let
them know that you don't give up easily. Let them know that you will continue fighting for your sons rights. Something may
open up and you'll be the first one on their minds.

 

[coloradochick]

Good advice on being a thorn in their side. They get good at not working too hard but of they're poked in the side hard and long enough they'll get up off their hineys and do their jobs.

 

[Carols Clucks]

Is the only thing offered by the government lock up care?

I know you want better for him, but if you are hurt and it sounds like it is only a matter of time, will they just put him in lock up care?

 

[EweSheep]

Is there a such a thing call elderly abuse? Its only a matter of time when you will be very hurt that requires hospitalization and your hubby can not care for him, what would it be? No back up plans?

 

[NovaAman]

Oesdog, I do not pray for many people, but I am going to for you and you DH, and Danny. I hope it all works out to benefit you all in the end. It is a hard road. I do not have disabled children. I am however, raising my step mom who I promised to not send to a home. My mom has suffered stokes, has epilepsy and has the mentality of a 10 yr old in a 70 yr old body. She gets worse all the time. Caring for the disabled love ones is hard. I am so sure its even harder when it is your children.

So lots of good vibes sending your way from across the pond.

Nova

 

[oesdog]

Well right now I just feel like I want to go get in the car and drive off and not come back but I can;t do that.
I don;t think things will ever improve here. All I want to do is cry because nothing is ok. Dh is not well and is trying to do Dan and I can;t do right for doing wrong, he is just sore and tired and has a bad head so I don;t blame him for being grumpy . Maybe I should just take dan round to that stupid Social workers house and leave him there for a few nights and see how she likes it!!!!!

Oesdog