Oh Mike that was beautiful... and I have ever told you that you're sharing here has been so instrumental in my sobriety and thank yoU = you're amazing!!!
Kelley - wow, same to you - and you know what? I know this feeling and I'm already feeling it even though it's over a decade away! I spent so much time mourning the fact that I would die and never get to see my children graduate, get married etc... I was making a recording for them to listen to at their 'big events' in life because I just knew I would drink myself to death long before any of that.
So my brain likes to still project into the future now... almost with a new freedom, but it turns to worry instead of more healthy fantasies of their smile, or their happiness. Go figure - I have to turn this worry over because It's no good and I can't handle it... He can.
I guess we always think our children are special - that their problems are unique - but they aren't. It helps me to remember that others are coping and have learned to get through it and are getting along just fine with any problem they're having that is just like mine. That it's possible for my son to be a really intense child, yet grow up to be happy - millions of others have made it work before him, and are doing it now. Millions of people with autism are living very happy lives right now... and will continue to do so. I worked with adult autistic that were untreated for a few years in college. Even they were okay... and this was the days of institutions still in the late 90's.
Your son has had so much - he's got a good foundation and you know it. There were 'mother' figures in the institution I worked in, and they cared for the residents. Later when that was no longer and we moved on to group homes and treated autism - some of whom were unrecognizably autistic - friends were made - the staff (I was one of them) loved them like family. There are good caring people out there, and it will be okay Kelley : )
I am already fretting over my son being an alcoholic. He's 6, and he has all the thinking and everything in place. I know how he will feel the moment he takes a drink. I will not be able to stop him. Will people love him through it? Will his family turn on him like my in laws have turned on me? I'm afraid - yet deep down, I know it will be okay in the end... it just has to be.
-- Edited by justadrunk on Wednesday 27th of February 2013 08:56:42 AM
__________________
Thanks for everything. Peace and Love on your journey.
It takes courage to have faith and let go of your fear. Courage to trust in God. Courage.... The BB talks about humbly relying on an infinite God rather than our finite selves. It says " The verdict of the ages is that faith means courage. All men of faith have courage. They trust their God...." They are talking about fear in this part of the book, and it is fear that has had me awake and crazy for the past three hrs, when I should be sleeping. One of my biggest fears has always been what is my son's life going to look like as a young adult going forward? For the past 17 1/2 yrs, he's been in the public school system, entitled to services as mandated by special education laws. In 3 months, he's done. For good. Then services are based on need, of which there is no question, and availability of funding, of which there is an ever dwindling amount of. When I stated to his social worker a couple of months ago " what's his life going to look like, be like after school? " her response was " Whatever you make it." No pressure there. So here I sit, dwelling in fear while trying to be courageous and have faith. I have done everything I can to build a meaningful and contented life for him. AA and God have given me the ability to clearly focus and advocate without being the Mom from Hell. The one they'd groan at when they saw me walk into the room. Most days. Some days, like today, I get so worked up and try to dictate the terms of the agreement. Problem is, the agreement isn't even in place yet. God, grant me the serenity to let go of my fear and gain courage and faith. Oh, and a couple of hours of sleep would be cool too. Thanks for listening to my ramblings. ((( hugs))) & Peace
__________________
I asked God for all things that I may enjoy life. He gave me life so that I may enjoy all things.
Thank you Kelley! It certainly sounds like your faith is being tested. What I try to keep in mind is my kids have a Higher Power too and it's not me. I can be helpful were possible, but the end result is still in God's hands. It's difficult at times because we want the best for our kids. But, at times, I'm not sure what is best? God knows, so I pray and ask for direction, strength and courage to do the next right thing. To take one little step at a time and let him handle the details. Wishing you peace while standing in that hallway until the next door opens.
The social worker stated that his life after school will be what "you" make of it? I would suggest a shift in thinking. It's what HE makes it. To some degree you have the same empty nest/letting go fears that any mom would have with a kid about to become an adult.
You have some added confusion to which nobody has the answers at this time. Is he disabled so much that he will need to be on a medicaid waver and disability for the rest of his life? Dunno. What will prove that? Whether or not he can achieve some measure of independence in his living situation and a job. How will you know if he can do that or not...Through him trying and either succeeding or failing. Will that be torturous and anxiety provoking to watch? To some degree yes.
Nonetheless, if he has to be on disability, live in a group home...whatever...those are not "end of the world" scenarios. I've worked in those settings and seen disabled folks living meaningful lives in them. Is it ideal for people to be most able to provide for themselves and to live on their own with less supports....Yeah, but it will be okay and there is a whole spectrum of functioning and a whole spectrum of services out there for adults with special needs just as there is for children.
Now would be the time to look into independent living programs which are tailored to his level of functioning. Having the diagnosis and being a young adult is often the ONLY criteria needed to receive those types of services. Even if he was severely disabled, you don't need to be his chief caretaker for life.
__________________
Keep coming back. It works if you work it. So work it. You're worth it!
Kelley, ... Morning, ... ... ... Ditto what Mike shared ...
My wife and I have a 'special needs' child ... he's 39 y/o and lives in a group home setting and gets all the care and attention he needs, including all the medical issues that need attention ... We go and pick him up at least once a month and all holidays to spend time with him ... He's always been part of the family, not a forgotten person in a mental institution environment (like many are) ... My wife was responsible for making all that happen ... each State is different and has many hurdles for you to get over to get what it is your son needs to live a comfortable life ... many of these State run facilities are pretty good in fact ... (some not so good, so you have to be very careful in your planning ...)
Finding the proper assistance will take you some time ... the paperwork can be overwhelming, but just hang in there ... I think your best bet for finding assistance this late is to use a simple 'qualifier' when searching the web for State assisted options ... USE THE PHRASE ... "do I qualify?" or "how do I qualify" when searching for help .... for whatever assistance it is that you're looking for ...
We found that to put our son in a 'private setting' would cost us $10,000 to $13,000 per month ... that was 25 years ago ... ... ... For us? ... the State takes care of our son very well, and we provide love and medical care ... My wife's FEAR is if something were to happen to us before it's his time to go ... He's got the mind of a 'five year old' and doesn't react to change very well at all ...
One thing for sure, 'worrying' over this will not do anything other than accomplish driving you nuts ... get busy looking for the right thing for your son, pray about it, and leave the rest to the man upstairs ... (it may take a little time, but the answers will come)
__________________
'Those who leave everything in God's hand will eventually see God's hand in everything.'
Thank you all for your replies. They have humbled me and helped me to be able to look at the situation as I have been trying to, that the outcomes are in his Higher Power's hands, not mine. I can, and have, done the human leg work that is necessary so far. Mark, your reply has given me the ability to be grateful for the services and things he has in place already, way ahead of the game than a lot of young adults his age. He is severely disabled and as far as him managing his own life, that's not a reality. But he can make choices within his limitations, and that is what I need to realize, encourage and learn to be grateful for. We already have a medicaid waiver and are working with DVR to try and see if there are job opportunities out there. I have begun to integrate him into our local community through volunteer positions that we do together at the Y and the local food bank. I am looking into group homes and other housing options as well. Our goal has always been for him to have a life separate and apart from me and his Dad by the time he is in his mid twenties. That seemed reasonable and doable when he was 10, 12, even 16. Now that he is going to be 21, and mid twenties are right around the corner, it scares the hell out of me. My husband and my daughter have already decided that the day we move Ryan out will be the day they move me in...to an insane asylum. My life has been caring for this child daily as you do for a toddler for almost 18 years now.(I don't count the first 3 years, as he was a toddler then. ) I have not always done a stellar job of that, but I've have done my best within my circumstances. Pappy, it helps more than you know to hear how well your son is doing in his environment. I was doing pretty good for a while in doing just what you said, doing the leg work, praying about it and leaving it to our Higher Powers, mine and his.Yesterday I tried to take the control back, and within a few hours was right back smack in the middle of fear and anxiety, to the point of it keeping me awake. My hope is that we find for Ryan what you you have found for your son, a safe, nuturing environment that cares for his daily needs so that we can become his parents who love him and do the family things with him. So that he can have a life that is safe, nuturing and productive, and my husband and I can have a life as well. So I guess I need to let go of the worrying and get to praying. How's that saying go...... If you pray, don't worry, and if you're going to worry, why bother praying???? Something to that effect anyway. Thanks again all. (((hugs)))
__________________
I asked God for all things that I may enjoy life. He gave me life so that I may enjoy all things.
(((Kelly))) For a time there I worked voluntarily in a centre alongside people of varying disabilities. Each day there were different activities planned such as cooking biscuits or making pickles to sell. Sorting clothes or recycling to help raise funds for their centre. It was really great to see how well they were all treated and cared for.
I just wanted to 2nd Tracey's share ... our son goes to a central office every day for him and his fellows to work a few hours a day on different small income jobs that helps give them 'self esteem' and the feeling of 'accomplishment' ... it gives them a little 'spending money' for movies, trips to the 'Dollar Store', etc. ... ... ... our son's group home is in a regular neighborhood ... and a staff of two per shift, rotate like every four days or so ...
'Burn-out' on that job is frequent ... so the staff is constantly rotating ... the group homes are filled with patrons of similar or of the same diagnoses ... I won't kid you that there's never a problem ... there is always something ... for instance, my son keeps breaking his glasses when he has a 'fit' ... it's not as much of a problem now as it was in the beginning, but a whole lot more under control ...
My prayers are with you Kelley ... you can handle it, cause we're here to support you ...
__________________
'Those who leave everything in God's hand will eventually see God's hand in everything.'
A few yrs after working at the centre I began teaching aerobics classes for the elderly at the local senior citizens hall. Guess who ended up coming along? The very people who I made pickles and bickies with. We had a good time. Sometimes 1 or 2 would be a bit off that day where their carer would warn me not to look them in the eye or focus any attention on them. They loved coming along to danceto the music. Theres a photo here somewhere of Barry doing knee lifts by the stage. I'll see if I can find it. All up it was one of the most rewarding jobs I've had apart from mothering and homeschooling.
