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I have 2 sons who are developmentally delayed and have Aspergers... I love them dearly, I love them just the way they are and I'm not sorry that I had them or anything like that, I'm just venting because I am feeling extra overwhelmed and misunderstood as a parent. When my children and I go about our everyday lives, we experience alot of discrimination, judgmental glances, and rude comments from ignorant strangers. I know I shouldn't let it bother me, they just don't know better, but its like adding insult to injury, I am the best mom I know how, and I study and I read and I take my kids to specialists and a private school for the disabled, and still my kids will never be normal. To cope, I have been applying the same 12 steps to deal with all of the things I cannot change in my life for example: My ex's alcoholism The abuse that my childen and I suffered at his hands. The guilt of how long I let that go on before leaving. I am also using those steps to deal with Autism. I was recently at church and they were taking up a special collection for a famliy that had a terminally ill child. While I am deeply moved by that family's plight and empathetic to the terror that must come with losing a child I am also filled with frustration. I was thinking to myself about the suffering that parents of the mentally ill endure. Suffering that will go on for God knows how long, and like with Alcoholism, we must suffer in silence. The parents of the terminally ill child know what is wrong with their child and everywhere they turn they find support, understanding and acceptence of what is happening to their family member. I do not lose my child completely, and I realize that is a very unique form of suffering that I hope to never know, but the other hand, I am mourning the death of dreams every parent has for their child.. over and over, with each age appropriate activity that my children cannot participate in, or experience, I watch as life is passing them by and they are left in its wake. School dances, having a best freind, being a part of an orchestra or chior, phone calls from friends, over nights and parties, study partners, attending prom, and most recently I add to this list, not being able to get a drivers liscence. And there is no end in site, no cure, my sons will most likely never go to college, get a job, get married, or start a family of their own. And I get to watch the disappointment on their faces as they watch kids their ages doing things they will never know. There is no closure, and only embaressment for me as a parent. I get to look like a terrible parent to the uninformed passer by... There are no pats on the back, or public recognition of the suffering that I endure all day every day. I have no answer to this, and I don't really know what I would want anyone to do about it... It is a weird disease. I just needed to get it off my chest. I was listening to Pink Floyd tonight, and the lyrics to Comfortably Numb were really hitting home, in light of my children... I just thought I'd share them.
Comfortably Numb: Hello. Is there anybody in there? Just nod if you can hear me. Is there anyone home?
Come on, now. I hear youre feeling down. Well I can ease your pain, Get you on your feet again.
Relax. I need some information first. Just the basic facts: Can you show me where it hurts?
There is no pain, you are receding. A distant ships smoke on the horizon. You are only coming through in waves. Your lips move but I cant hear what youre sayin. When I was a child I had a fever. My hands felt just like two balloons. Now I got that feeling once again. I cant explain, you would not understand. This is not how I am. I have become comfortably numb.
Ok. Just a little pinprick. [ping] Therell be no more --aaaaaahhhhh! But you may feel a little sick.
Can you stand up? I do believe its working. good. Thatll keep you going for the show. Come on its time to go.
There is no pain, you are receding. A distant ships smoke on the horizon. You are only coming through in waves. Your lips move but I cant hear what youre sayin. When I was a child I caught a fleeting glimpse, Out of the corner of my eye. I turned to look but it was gone. I cannot put my finger on it now. The child is grown, the dream is gone. I have become comfortably numb...
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M e l i n d a "If a thing is worth doing, it is worth doing well." -Euphonia and the Flood
Just want to let you know that there IS hope for your sons. I have a brother who is both autistic and mildly retarded. When he was little, he was also hyperactive. Needless to say, our childhood was intense. However, my mom was diligent to the point of obsession in locating help for him. Mind you, this was back in the early 70's when not as much was known about the condition. We burned up the highways in the DFW area getting him to various doctors and programs. The best thing that ever happened to him was becoming involved with the Psych department at the University of North Texas. In addition to helping the rest of the family cope with his condition, participating in that program unlocked some doors inside my brother that enabled him to function a little better in the world around him.
Anyway, some of my brother's behaviors/symptoms subsided after he reached puberty. He hasn't had any kind of meds since he was about 12 or 13 (he's now 42). He graduated high school - only a year behind when he normally would have. He is active in Special Olympics. He has a job. He's active in church (all of the church ladies adore him). He's got a very full social calendar - LOL. Oh, and he lives by himself in a small duplex in the same town as my mom. He will likely always need some type of assistance managing his money or getting from one place to another, but right now he has sooo exceeded our expectations and is doing so well. We are so pleased and thankful for his continued progress and independence.
Will he ever go to college? Who knows? Will he ever marry and have a family of his own, probably not, but he has a full, happy life now and is on the right path for that to continue.
I hope this helps - just wanted to share my experience with you.
It sounds like you really did need to vent. It's nice to have a safe, non-judgemental place like this to do it.
I can't say I can understand what it is to live with Autism, because I don't. I do know how critical people, and especially other Mom's for some reason can be.
I don't really have anything wise or wonderful to say. Just wanted to respond with a hug I guess. It's sounds like you could use one.
Dear lady, I was blessed to grow up with my best bud who's brother had downs. LOL I love Billy to this day and he has to be in his late 40's.
It spurred me into working for the school system here in the special ed dept. I started with the dd kiddos and ended up being blessed to work with all kind of special ed persons!
The last years I worked with the dd kids and emr 18-21. oh my God. I LOVED going to work. We made doughnuts and cookies and sold them, then every friday we went to museums, the Oregon Gardens, the zoo, camping, fishing and more!!
They were taught lifeskills and helped to live independantly with someone to visit and help them.
We took them swimming and the dd kids were a blast. They LOVED to swim. they were in wheel chairs and had to be fed! but ohhh they loved water.
We took them to this park that had a few rides, a pool etc. I took my boys out of their wheel chairs on to the "roller coaster!!" I screamed and was scared, they were jubuilant!!! hahaha. I will never ever in my life forget the fun, and joy with my kids.
We went to the Oregon gardens and there were these big pots outside the ponds they scooped up some of the green stuff out. WEll there were frogs stuck in them, so the boys, one was autistic, one not enough oxygen at birth etc, we were getting the frogs out and putting them back and throwing the green stuff at each other! lol.
I loved to show them fun outside the box.
I tell ya lady, my mother was my best friend. When she died, those kids gave me the most love and support and understanding of "anyone."
Yes you are blessed. And if you saw me in a store I would be smiling at you and your kids and if they reached out would happily shake their hands or feet whatever! (o:
I know your struggles very well. We were looked at like a bunch of nuts spending time with these kids.It was hard doing diapers and hauling them in and out of wheel chairs. but again all of us loved them and shared soooo much laughter!
One kid was very big and was a joy. We had to change him on the floor! The other gal and I would get laughing with him and would get his leg and foot metal wraps on wrong, etc. lol
oh honey I am so glad for moms like you. Lots and lots of our kids were with foster parents!!
My AH and I would buy them shoes and whatever they needed. I cut hair so that was fun. We did our best to help them feel a part of the world.
I was also blessed with an innate ability to relate to people with autism, and the other "label" ausbergers. probably not spelled right. I would let them know I was there for "everyone" in the classroom, though really there for them, took a while but next thing ya knew they were my best bud.
I am the same way with my animals that came into my sanctuary that were damaged and depressed.
One boy was very autistic, did not talk but used sign. He had everyone fooled would not do what he was told. I looked into his eyes and said Ryan I KNOW you know what I am saying, he would giggle. goofball. lol he was smarter than any of us.
hope this helps some. I believe it is the imperfection of this world that causes all types of our obstacles. I also know in MY experience, someday they will be perfect and remember what a great mom you were. And you will meet them perfect. I am sure of this.
My brothers step kid has PraderWillie. oh man talk about a multi busy kid! lol oh the stories I could tell you honey!! making me giggle now.
The mom had him at 3 years old and a girl 2. They met my brother in a neat whole grain little restaurant. The little girl made Lon go to their table. their first date, the mom was sure LOn would never want to see them again.. they went on a picnice and fed ducks. the little girl pooed her pants and the boy thru his shoes into the lake! hahaah they have been married many years and the kids are moved out now.
it was a joy to have them in our family. (O; If you ever want to share your stories I would love you to share them with me! debilyn who is glad you are here
Thank You for sharing your story about your brother really gives me hope. I just get feeling really despaerate sometimes... I know there are worse things in the world than my suffering, and I know I'm really not alone! I have all of you wonderful people here at Alanon to listen and encourage me! Thanks Again for your comment! -hugs melinda
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M e l i n d a "If a thing is worth doing, it is worth doing well." -Euphonia and the Flood
God Bless you for sharing your stories with me. I am deeply moved by you taking the time to do that and your encouragement for a complete stranger! Thank You so much! I am so blessed by everyone on this site! Now I'm going to wipe the happy tears from my eyes and have a good day! -hugs Melinda
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M e l i n d a "If a thing is worth doing, it is worth doing well." -Euphonia and the Flood
I do know for me as a recovering codependent I did the best I could at all times. When we know better we do better. For me personally to recovery from codependency took a paradigm shift. I had to be willing to give up a lot of pre conceived ideas. I also had to admit I was in a mess.
You are certainly not alone in being a single parent. You are certainly not alone in feeling guilty that you didn't give your children a better father. We do the best we can until we know better. The issue for me is being willing to be better.
I am glad you are here and sharing and hope you will reach out and get all the support and care you need for yourself.
I read your post early today and came back tonight to reply.
I recall when I was going to school to become a special education teacher, one professor always reminded us that "we are all one accident away from being disabled." Up until that course, I never consciously admited this truth.
Those whom you believe sit in judgment of you are most likely frightened deep down of handicapping condition because it could happen to them or their loved ones. Ignorance and fear can be so hurtful. I'm sorry this is a fact of life for you and so many other parents.
From my perspecitve, I think we are all handicapped in one form or another to varied degrees. For most of us, our handicapping conditions aren't so obvious as say someone with Downs, at least to the naked eye, and is certainly not recognized by federal laws.
Believe it or not, I experinece some degree of discrimination as a teacher of special education students. I have been told far too many times to count that "you don't really teach" and some have called my students names. They can be outrageously cruel. But I don't waste time getting offended or going into defense mode.
I know that my students have a purpose in life, just as regular ed students do. My students teach me far greater lessons than I can ever begin to teach them. I'm sure you can say the same of your children.
Your children and those whom I teach inhabit special little "Earth suits" as I call them, with unique nuerological wiring that make them perceive & navigate the world somewhat differently than most. They have gifts to offer those who are able to look beyond appearances and into their hearts, into their souls.
Please strive to forgive those who are lacking sensitivity to you and your children, if they knew better, they'd do better.
I wish you an abundance of strength and continued wisdom.
-- Edited by GailMichelle at 22:59, 2008-12-29
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You have to go through the darkness to truly know the light. Lama Surya Das
Resentment is like taking poison & waiting for the other person to die. Malachy McCourt
Hello I know you pian as well. I have a girl that is 23 with Cri-Du-Chat Syndrome. when she was little it was so hard to go in pubic as people just do not understand and they do not want to know what we as parent of S Chilren go throught. I also have my 20 year old son that has CAPD and when I was look of help of him the school and the doctor both said was the other one place to help this child so I feel you pain.
