I Guess I'm Not Cool

[les63]

I don't post much. And when I do I post upsetting posts. I think I don't get my point across to most on here so I do get jumped on. Right now I am Not looking for sympathy. I'm trying to deal with my life to the best of my ability.

Right now I'm depressed thinking about Noah's future. Autism, nonverbal, not potty trained. He is a happy guy, has always been this way. Great with a laptop but probably is 3/4 year old mentally. Noah will be ten this month on the 26th.

I will be there for Noah till the day I die. But I fear one day, he will have to go to a home. And that sucks. Some are good, some are bad. I wonder sometimes if it would be better if he died (of natural causes) before this came about. I'm so scared of him being hurt; it makes me start balling/crying immediately. Damn, he wouldn't understand. Oh God, this is killing me to think about his future. Oh God, I am so scared....

To you that have no idea of what I'm talking about; thank whoever that you will never have to deal with this.

On top of everything else this is really hard. I guess I am depressed tonight. Crying....

[mmhmm]

Oh, les, I think most of us can understand what you must be feeling.  While I don't have the same situation and, therefore, don't share the feelings you must be dealing with, I do have kids (albeit, grown ones) and know how much we love them and want the best for them.  I also remember being really frightened for their futures, at times, and crying as though my heart would break.  It's part of being a parent, and it's not one of the fun parts.  We celebrate the joys, and we drown in the sorrows of the down times.

While there's not a thing I can say that will make your fears go away, know we are here for you, we do care, and most of us who are parents do understand and empathize.  We can't help much, but we can be here.  Cyber hugs and empathy are all I've got to give.  I do wish I had more!

[grits]

les63, it is hard to get points across on the internet. Don't let anyone make you feel like you are less if they don't understand. They should ask specific questions to try and find out what you mean. Also, neither you nor Noah chose this for him. I am sorry that you are afraid for him. Take it one day at a time, and enjoy the lovely person who is Noah. Several of my friends have children with autism. The children are happy, and a joy to be around.

 

[Green Eyed Lady]

I'm so sorry you are feeling so afraid, Les.  You are right.  I have no idea  how you are feeling.  Maybe this is a really dumb suggestion, but is there a support group in your area?  People who really DO know exactly how you are feeling and have the same fears?  Perhaps they could share with you how they are dealing with the "unknowns".  I don't even know if you would be able to make arrangements to attend a meeting, but it's the only thing I can think of.  People here do care about you, but it's not the same as sitting down with people who have walked in your shoes.  I sure hope you can find some support.

This message board is like real life.  You have some wonderful, caring people and you have some Grade A Assholes.  Thankfully, the former group way outnumbers the latter group.  Take what you can from the people who are truly trying to make a difference.

[moneymaven]

I'm so sorry, les.

[NastyWoman]

I am so sorry Les that you are so scared for the future of your baby (once the youngest, always the baby) and I understand it hitting you so hard with this milestone birthday coming up. Too bad our "magic kisses" that make every thing all right for our kids only go so far. But don't forget that Noah has at least one magic weapon left in life-> you the mom who loves him with all her heart. I don't believe for one minute that this will make things easy, but you are a very strong woman and going forward you will find the best path for Noah and you and for your other son.

[JustLurkin]

Feb 10, 2014 22:48:15 GMT -5 les63 said:

I will be there for Noah till the day I die. But I fear one day, he will have to go to a home. And that sucks. Some are good, some are bad. I wonder sometimes if it would be better if he died (of natural causes) before this came about. I'm so scared of him being hurt; it makes me start balling/crying immediately. Damn, he wouldn't understand. Oh God, this is killing me to think about his future. Oh God, I am so scared

*We* all feel this way, it's natural. As he grows up and his potential expands, you will be happy and excited about different things just like any other parent. I've already bemoaned the mountain of paperwork coming my way like a freight train, and all the legal stuff that comes with him turning 18...some of it is so comical it's laughable--really...all of my initial petitions will be denied, it's a waste of my time and money (but I do see how it protects some borderline people, or hell, people who just have crazy parents). But the truth is, I'm excited for him, just as I'm sure any parent is. He'll be in school until he's 21, so will likely be home for that time.  There's a new housing program for the disabled (section 811), I think eventually my son will have *some* ability to live independently, he'd need a cleaning lady, and I'd probably have a monitoring system installed.  Right now my biggest question is whether to leave him here where he's developing community contacts or take him with me when I move (I swear, if I never see another snowflake ).  He'll make progress, slowly but surely...I think my son is finally getting the hang of the microwave...uhhh...after setting 2 on fire.  hahahahaha

We all have our days, you have a have a good friend you can talk about it with.  My BFF knows my feelings...my son is a black male with a debatable IQ...there are days I hope he goes his whole life without being assaulted, or shot in the back...today I'm glad he warmed up dinner. 

ETA: I got my son one of these watches to help with potty training:  bedwettingstore.com/vibrating-watches.html

[ՏՇԾԵԵʅՏɧ_LԹՏՏʅҼ]

Les: I'm sorry you're hurting & feeling so "down" tonight. I also can't know what you're going through emotionally - but you will have your sad times.

Do you have someone who can watch him when you just need to have a break and 'get away from it all'? Or get out with friends for a quiet meal and relaxing?

Sometimes you just need to step back and clear your head so you can re-focus on Noah.

You need some "you" time too. Is there a simple craft you can teach him that he might like and he can focus his attention on? Sometimes you have to do it by trial and error, but if he likes the laptop, even some of those "Match 3" games where you have to line up 3 of the same shape or color might help.

[busymom]

Les, I totally feel your pain. My own DS is in high school, & right now I have to pursue legal stuff like "guardianship".

Each age of our kids has it's challenges. I suspect my DS may end up in a group home, but fortunately my DD is the type of kid who would keep an eye on things, although I would never ask her to take on the task of bringing DS into her own home, as she is entitled to her own life.

Sending hugs. Just take it one day at a time.  Don't worry about tomorrow, just focus on today. And, really, they are a gift, aren't they?  (I've never met a "normally gifted" child yet that I'd trade DS in for.)

Justlurkin:  LOL on setting the microwave on fire!  My DS has done that too! 

[alabamagal]

All of us want the best for our kids.  All kids have challenges, just some more than others.  You probably have one of the most challenging types of issues.

I would second (or thid) support groups.  Sometimes it is good to talk to others who have the same issues.

Good luck

[zibazinski]

Yes, there are and there are also posters who have children and some of those children are adults now and they worry as well. They are an excellent source of comfort and information. 

[Jake 48]

Les, 
In my position with the FD, I interact with a parents group of special needs children. I am amazed at how supportive they are for each other, do you have anything like this in your area? they can be a terrific resource if you ever need to make the decision that caring for Noah is getting to be more than you can handle. Do you have a will/ guardianship set up for Noah? Having that in place now may relieve some anxiety, if God Forbid, you were not there for him. Planning for his future is the best thing you can do for him so you have control of what is best for Noah. God bless you, prayers and hugs to give you strength!

[Formerly SK]

(((HUGS)))  My son (9yo) also has autism but is on the milder end of it (he attends a normal classroom with a pt aide).  He also has pretty severe ADHD.  He's wicked smart academically, but he has the mentality of a Kindergartner - very sweet, has no concept of manipulation, never lies, always happy and "in the moment."  I absolutely worry about him going in a home - academic smarts don't count for anything if you can't follow a one part command without getting distracted.  Or if he spends his days talking aloud (to no one) about some fact he discovered.

It's definitely a roller coaster and I admit I'm also in a low at the moment.  It's so very hard as you struggle with the day to day autism issues to not think about the future.  I wish I had advice, because then I could help myself!    DH and I always say that parenthood is a marathon. 
Don't go too fast or you'll hit your wall.  And sometimes there are hills that seem to go forever.  But there are downhill sections, too.  And sometimes there is great scenery.  So I tend to remind myself to just keep my feet going forward.  It's all I have control over at the moment, so that's what I focus on.  Don't worry about some hill in mile 20, focus on your steps where you are in mile 10.  And breathe.  Remember to breathe.

Always feel free to vent here.  I know YM can get cantankerous sometimes, but I consider it a great support system. 

[toomuchreality]

I hope you are having a better day~
Hang in there!

[NancysSummerSip]

Les, in spite of the pain, the good news in this is that you are thinking about Noah's future NOW, while he is ten. Find a local or online support group, NOW. Find out what other parents are doing in similar situations. You have options now, but time goes by fast, and you don't want to wind up in a position where you have to do something. You want to have choices.

And unless you have other family to take Noah in, a group home setting will be his most likely home after you are gone. It seems sad now, but wouldn't you rather know ahead of time, and be at peace with the knowledge that you know what's next, rather than live in fear of the uncertainty of not knowing?

[genericname]

You are the coolest in my book. There is no one cooler than a mom who loves her kids as much as you do. I'm sorry I don't have anything to offer but a virtual hug and a prayer.

[HoneyBBQ]

Les

All I can do is offer a virtual hug

I hope that in the near future we can figure out some solutions for Noah in his lifetime scientifically/socially/etc that can help give you peace when your time comes.

[Miss Tequila]

Les, I'm also the mom of a special needs child (not autism, though we did have PDD-NOS diagnosis for a few years).

I get it, I really do. My daughter will never be able to live on her own. She will never get married and have babies. My dreams for that baby I carried in my stomach are not her reality. and in the beginning, I had a REALLY hard time dealing with it. I am a Type A so in my book, if I just put a lot of work into "fixing" her then she would be ok. I spent thousands and thousands of dollars and countless hours trying to make her something she wasn't.  It took time and a lot of effort for me to realize that her reality is different and there wasn't a damn thing I could do about it.

I stopped focusing all of my energies on "fixing" her because there is nothing wrong with her...she is just different. She is a happy little shit who has no idea that she is different.  But her reality is that she will never be able to live independently.  She will be 13 soon and I can't even leave her in the house for 15 minutes to run to the store. 

I think the only difference between the two of us is that I have a lot of outside interests....I have a career that takes my mind off things I cannot change.  You are a good mom but you need to allow yourself to have a little bit of "you" back.  Trust me, I am speaking from experience.  At one point, I was a complete mess.  I don't understand nor except depression so imagine my surprise when my doctor diagnosed me with panic attacks and depression...depression is for the weak and I am strong, dammit!  But having your world rocked can throw even the strongest down.

The other thing that you have to realize is just because something is upsetting to us, doesn't mean it will be to our kids.  My child will most likely wind-up in a group home when I die (I can't expect my older dd to take on her care).  My job is to make sure it is a kick ass group home, one that she will thrive in.  Just like her special needs school that she goes to.  God I hate the fact that she goes to a special needs school but she absolutely freaking loves it!  So the fact that it saddens me that this is her reality means nothing to her happiness.

I have no idea if I am making any sense....but I do get what you are talking about.  Feel free to PM if you ever need to talk to someone that is in your shoes or who has BTDT.  I also have a good friend with two severely autistic sons.  I know she would be more than willing to talk to you if you ever needed to talk to someone that is really in your shoes. 

[tloonya]

Les,
I am not sure if this will help you but telling you we all thinking the same things and fear for our autistic or not.
Guess yours is just more intense because of the child's health.
Let's hope with all the recognition of autism nowadays someone will come up with something wonderful and on time too.
Do you read up about new discoveries in autism? Do you connected with other parents of autistic kids? maybe that would easy the pain if you could talk to people who have same exactly fears?
For now take care of yourself so you'll be here for as long as he will need you.

[Spellbound454]

My dreams for that baby I carried in my stomach are not her reality.

I know that feeling only too well because one of mine has a disability. Its pointless to torture yourself over what might have been.
Better to draw a line in the sand and say, "This is where we are......where do we go from here?"

Expectations and achievements have to be readjusted.....doesn't mean they can't achieve... or be happy. Its different is all.

The practicalities have to be in place...those which make life easier. You get good at making arrangements because you have to be. What else can you do?

[les63]

Thank you all for your kind words and hugs. I feel better tonight although we had to get Noah from BOCES this morning. Poor lil guy is sick. Fever. Doesn't take over the counter meds well so I buy meds that are more natural with no added crap and you can add them to a drink and Noah won't notice the taste.  Much easier to put in a cup with some pepsi (which he drinks when he is sick, go figure). I just add a straw and bug him to death to keep drinking. Don't want him to get dehydrated.

Don't know if this will post. Newer picture of Noah with a new haircut that he had done at BOCES. They did a great job and Noah did too being a good boy! I love when he will look toward the camera/phone to get his picture taken. You have to be fast!

[Gardening Grandma]

les,
I am sorry. You are right. I don't know how you feel.  I have a severely disabled granddaughter and I can tell you that I have lain awake at night wondering how she will fare in a hostile world after I am gone and her father is gone and there is no one to advocate for her.  She's not a cute Down's syndrome toddler.  She is 20 now.  There are a few things that have helped me and I will share them.

She lives in a home (a state owned home with state provided care givers.  We are fortunate enough to live in a compasionate state (Wa).  I can go see her any time without notice.  Her caregivers, being state employees,  are better trained and better paid than the min wage workers that private homes employ.  And they stay longer so she has continuity of care.  Medicaid provides her with basic health ins.  Childrens Hospital in Seattle has performed two surgeries which have given her pain relief.  She Receives SSDI and has a case worker who we can go to with questions.  Next year she will age out of special ed and her case worker will attempt to find her part time or volunteer work - anything that will help her live a life of dignity.

Our state has a partnership program that allows families to set up special needs trust accounts at a very low cost.  The funds can be used to supplement what aid they receive.  I am conteibuting what I can right now and our wills leave her funds to go into the trust account.

All of these things have helped to ease my mind somewhat.  As Noah grows, I would encourage you to explore resources that will be available to the adult Noah so that you can get him"plugged into" the system.  And a support group, if available, can be helpful.

My dreams for that baby I carried in my stomach are not her reality.

When my DIL was expecting, I too had dreams of the things I'd do with my grandchild. I've had to give those dreams up. It hurts. It still hurts. And I cannot help feeling jealous of my friends with healthy granddaughters.  Granddaughters who say cute things. Granddaughters who are going to the prom and graduating high school and going to college.  While I am happy for them, I am jealous too.  And I cannot voice that jealousy.  

My best to you both.

[busymom]

Les, what a cute boy!

(BTW, I survived DS's parent-teacher conference today.  And speaking of the future, we're planning for the next school year already, & DS is going to be doing some job-training-type stuff at the school next year, in addition to regular core classes.  The future is approaching, whether or not I'm ready for it.) 

GG, I'm so please that the Seattle area has such good programs.  I'm at the very early stages of finding out what's in store here after high school.

[les63]

Gardening Grandma, I too now live in a state that takes care of the developmentally disabled. New York State. We lived in Washington state until the Fall of 2012. I do love this state more. They definitely have it more together to what I experienced in Washington. Going forward with getting things aligned for Noah's future I do have hope.

And I understand with being jealous. It is hard to let go when you see "normal" children out and about. I have good days and bad days with this. Thankfully, more good days. I love Noah and I know he loves me (have no idea if he knows I'm his mom?), but he knows I take care of him. We are so in tune with each other it is scary. But, I've been home with him since day one and just know him very well.

Hugs to you and your family.

[les63]

Busymom, I had an IEP with the BOCES group last Tuesday and it went great! The school district is great here too, the special education director is awesome and they definitely are on the ball. I met with Noah's teacher and all the therapists. They like working with Noah and his teacher said he has improved since last September. Just hard to get him away from the smartboard. Noah loves youtube for certain videos.

Everything is all set up for the Summer program too (which he never had in Washington, booooo!!). I'm glad you're all the ball with your child. Good luck with the job training. Our kids can surprise us in so many ways.

Hugs!!

[mmhmm]

Les, Noah is beautiful.  Thank you, so much, for sharing him with us.  Give him a hug for me ... and a Pepsi! 

To those of you who have shared your similar stories, thank you, too.  Sharing is often the thing that gives us the strength to keep going when we think we're going to falter.

[cronewitch]

My great niece has down syndrome and may never be independent. She is almost 15 now and needs babysitters still. Two of her BFFs are her age and her mom will leave her with them for a few minutes now but mostly her dad, brother or grandparents. She just doesn't understand things like at Christmas her mom got kittens to hide until Christmas for a friend and when they picked them two of the kittens had special needs. Later when her mom was telling someone about the kittens the girl tells them two of the kittens have down syndrome. She knows not all special needs are down syndrome she goes to a special classroom but for some reason assumed special needs kittens have down syndrome.

She seems pretty smart sometimes but does things that are socially wrong like telling her uncle to go home now when he is visiting her mother. She lives on the ipad so loses that if she is rude and her mother counts to three before she straightens up.

I think she would love a group home if she was taught that it was grown up leaving home like her big brother will next year. Her goal last time I heard was to work at a supermarket because she knows someone who works there. So if she was in a group home and taken to a job doing something like stocking shelves she could be a real grown woman with a support network. Then if she out lives her parents she will already be as independent as she can be.

I wonder how much money she would need to live in a group home.

[Formerly SK]

Feb 11, 2014 11:57:25 GMT -5 Miss Tequila said:

Les, I'm also the mom of a special needs child (not autism, though we did have PDD-NOS diagnosis for a few years).

I get it, I really do. My daughter will never be able to live on her own. She will never get married and have babies. My dreams for that baby I carried in my stomach are not her reality. and in the beginning, I had a REALLY hard time dealing with it. I am a Type A so in my book, if I just put a lot of work into "fixing" her then she would be ok. I spent thousands and thousands of dollars and countless hours trying to make her something she wasn't.  It took time and a lot of effort for me to realize that her reality is different and there wasn't a damn thing I could do about it.

I stopped focusing all of my energies on "fixing" her because there is nothing wrong with her...she is just different. She is a happy little shit who has no idea that she is different.  But her reality is that she will never be able to live independently.  She will be 13 soon and I can't even leave her in the house for 15 minutes to run to the store. 

I think the only difference between the two of us is that I have a lot of outside interests....I have a career that takes my mind off things I cannot change.  You are a good mom but you need to allow yourself to have a little bit of "you" back.  Trust me, I am speaking from experience.  At one point, I was a complete mess.  I don't understand nor except depression so imagine my surprise when my doctor diagnosed me with panic attacks and depression...depression is for the weak and I am strong, dammit!  But having your world rocked can throw even the strongest down.

The other thing that you have to realize is just because something is upsetting to us, doesn't mean it will be to our kids.  My child will most likely wind-up in a group home when I die (I can't expect my older dd to take on her care).  My job is to make sure it is a kick ass group home, one that she will thrive in.  Just like her special needs school that she goes to.  God I hate the fact that she goes to a special needs school but she absolutely freaking loves it!  So the fact that it saddens me that this is her reality means nothing to her happiness.

I have no idea if I am making any sense....but I do get what you are talking about.  Feel free to PM if you ever need to talk to someone that is in your shoes or who has BTDT.  I also have a good friend with two severely autistic sons.  I know she would be more than willing to talk to you if you ever needed to talk to someone that is really in your shoes. 

I think this is spot on.  My son is happy as a clam.  He spends his days wrapped in his head.  Often at recess he just walks around alone designing things in his head.  I used to be so sad for him, that he didn't have friends or wasn't invited to bday parties.  But then one day I realized that hey, he's happy!  He doesn't care about having friends!  So why am I depressed over it?  In some ways, DS has it really great.  He is unaware of about 99% of the angst and bullshit that society shoves at kids.  He doesn't worry about being popular, or good at sports, or having the latest cool toy or shoes.  Good for him. 

[Deleted]

My oldest nephew has Aspergers and Auditory Processing Disorder. He is a Senior in HS this year and my sister has been worrying what he is going to do when he graduates. 

He's another one that is attached to his computer. She thought he was hanging out on Steam all day but it turns out he is quite a graphic artist!  He has had people order logos and other artwork from him.  

She found out because he tried to create a Paypal account and couldn't because he was a minor.  She is grateful to know that there are things he can do to earn a living and he can do it within his "comfort zone".  

[Gardening Grandma]

Feb 12, 2014 6:23:09 GMT -5 cronewitch said:

My great niece has down syndrome and may never be independent. She is almost 15 now and needs babysitters still. Two of her BFFs are her age and her mom will leave her with them for a few minutes now but mostly her dad, brother or grandparents. She just doesn't understand things like at Christmas her mom got kittens to hide until Christmas for a friend and when they picked them two of the kittens had special needs. Later when her mom was telling someone about the kittens the girl tells them two of the kittens have down syndrome. She knows not all special needs are down syndrome she goes to a special classroom but for some reason assumed special needs kittens have down syndrome.

She seems pretty smart sometimes but does things that are socially wrong like telling her uncle to go home now when he is visiting her mother. She lives on the ipad so loses that if she is rude and her mother counts to three before she straightens up.

I think she would love a group home if she was taught that it was grown up leaving home like her big brother will next year. Her goal last time I heard was to work at a supermarket because she knows someone who works there. So if she was in a group home and taken to a job doing something like stocking shelves she could be a real grown woman with a support network. Then if she out lives her parents she will already be as independent as she can be.

I wonder how much money she would need to live in a group home.

Crone,
My granddaughter lives in a group home with 2 other young women in their early 20's.  They each receive SSI.  Of that, each month 1/3 of their SSI goes to pay rent.  The utilities, food, etc comes from the remainder (they do have EBT cards).  Care givers are provided for by the state.  The care givers do the grocery shopping, take them to dr appts, and take them on other outtings (to the park for exercise or shopping for clothes).  The care givers do the  laundry but each puts their clothes away (she is short, so needs help hanging things up). Although the caregivers do most of the housework, each girl is encouraged tobelp to the best of her ability... Medicaid covers their healthcare needs.
So she is able to live on her SSI since her rent is subsidized and the caregivers are provided.