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Re: Welcome to the new Autism Spectrum Disorders f #198692
09/13/05 02:35 AM
09/13/05 02:35 AM
Joined: Aug 2005
Posts: 35
Comox, BC, Canada
J
JessieBoo Offline
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JessieBoo  Offline
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Joined: Aug 2005
Posts: 35
Comox, BC, Canada
Hi, to answer your question about families? I have family about an hour away, and my mother-in-law lives two hours away. They have been no help at all. I haven't had one night away from my son, and God knows I need it. My mother-in-law is a nurse but her excuse why she won't help me by watching my son for just one night is she doesn't have the understanding on how to care for him? She knows the only problem with him is really his eating, he only eats baby food. He goes to bed at 7 and sleeps till 8am! My mother always volunteers to watch him but I don't know if I can trust her. She is an ex addict, clean for about 7 years and she has Hep C I just don't think I could relax with her in charge. So I can't say my family is not supportive but they do not help me with my son. When I phone my mother-in-law in tears, at my wits end, she says "thats all part of parenting, I raised 4 kids and I made it through", I get sick of hearing that. Cleaning feces off the walls and floor NIGHTLY is not a normal part of parenting. But I get no support emotionally from her, which is what I need. We have stopped calling her. Haven't talked in about 2 months. I wish she would just come over and say, I'll watch him tonight, go out for dinner. I haven't been out to dinner in 5 years almost!! Not to a movie or anything. Its hard to be stuck here 24-7.........with no light at the end of the tunnel.

Re: Welcome to the new Autism Spectrum Disorders f #198693
09/13/05 02:55 PM
09/13/05 02:55 PM
Joined: Sep 2005
Posts: 7
Indiana
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AustinsMama Offline
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AustinsMama  Offline
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Joined: Sep 2005
Posts: 7
Indiana
In regards to how our family has treated us....I have to say that we have been truly blessed in that area. I have little contact with my bio-dad, but that has been since forever and has nothing to do with Austin. But my mom and (step)dad have been supportive, for the most part. I think initially they weren't sure why we were making such a deal out of Austin not talking when he was younger, and thought we were over-reacting, but my mom is the type to keep her mouth shut for the most part. And of course now that they realize there is a real issue, they don't say a word about it!
My husband is an only child and so this is the first grandchild for his parents, and they are both truly amazing. His Dad and step-mom have been going out and buying books on autism and constantly ask what they can do to help, and my MIL calls us up every couple weeks and asks if she can babysit on nights she has off.

I really feel for all of you that are alone in this and don't have the support of your family <img src="/images/graemlins/frown.gif" alt="" /> That is just so sad and I'm so sorry that you have to go through all this without that help, it's just so wrong. I wish that all of these family members, especially grandparents could wake up and realize what a wonderful blessing their grandchildren are and start doing everything they can to be helpful and supportive! {{{{hugs}}}} to all of you for going through this

~Niki

Re: Welcome to the new Autism Spectrum Disorders f #198694
09/14/05 02:57 AM
09/14/05 02:57 AM
Joined: Aug 2005
Posts: 35
Comox, BC, Canada
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JessieBoo Offline
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JessieBoo  Offline
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Joined: Aug 2005
Posts: 35
Comox, BC, Canada
Hello, the part you said about over reacting to his lack of speech, I know what you mean. My husband said I was outta my mind. He said he didn't talk until he was 3ish so maybe Shawn is just taking his time, but being a mother you just know. He called his mom, (the nurse) and made her try and convince me to just relax. I was saying whats the harm in taking him to the Dr? I waited just to keep the peace........sure enough........Autism! Shawn is my 3rd of 4 children, so its not like a first time mother blowing things out of proportion...........I knew something was up!........but there have been no " I should have listened to you", no " you were right"..........no apology for making me wait 6 months for treatment.............it pisses me off..........I think they act like no grandchild of mine has a disability........etc... He is the first grandson on their side..........you'd think they'd have more of a bond with him. He is super cuddly, always smiling, never has tantrums, never cries, loves going shopping.he is a great kid all around....wouldn't change him for the world, I just wish everyone else thought like that!

Re: Welcome to the new Autism Spectrum Disorders f #198695
09/14/05 04:07 PM
09/14/05 04:07 PM
Joined: Jul 2005
Posts: 27
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anifsj Offline
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anifsj  Offline
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Joined: Jul 2005
Posts: 27
I have so much regret for having waited so long to get my son to treatment. Like you, I was told over and over that I was overreacting and expecting too much. Now, anytime I hear that "early intervention is best," I almost want to kick myself. I recently read something very inspirational that has helped me start healing in so many areas of my life that need help. I'm trying to get rid of that frustration and even anger that I feel at all the people who never volunteer to help take care of my son. My parents help financially in every way they can, but they don't ever ever volunteer to watch him so that I can go out. I'm the one who has to sit at home while everyone else gets dressed, goes out, and talks about it the next day. Do you have any idea how it feels to be left behind every single time??? Like you, I hadn't been to a movie or out to dinner in years. I'm now trying to change that even if I feel guilty. My entire day is spent at work trying to make ends meet, and my entire evening is spent dealing with an autistic son and with a daughter who wants desperately to run away and escape her autistic brother. Who can help us? I know how you all feel...I know how you feel. Maybe it will make you feel a tiny bit better to know that someone out there knows exactly how you feel. Trust me, if I could, I'd have watch your son for you so that you could have that much needed hot bath, dinner, glass of wine, and movie.

Re: Welcome to the new Autism Spectrum Disorders f #198696
09/15/05 02:53 AM
09/15/05 02:53 AM
Joined: Aug 2005
Posts: 35
Comox, BC, Canada
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JessieBoo Offline
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JessieBoo  Offline
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Joined: Aug 2005
Posts: 35
Comox, BC, Canada
You're such a sweetie <img src="/images/graemlins/smile.gif" alt="" /> I said to my hubby tonight actually that us not having any alone time (dinner out, walk on the beach...etc...) is going to be our downfall. I have so much resentment for him, he teaches Martial Arts 3 days a week and goes to his friends a few times a week, which is fine, however I don't know a single person in the town where I live, other than the Autism people I deal with. I have no one talk to, no one to go for coffee or lunch with. He doesn't seem to realize that I hate having to stay at home all day, everyday. I am starting to hate him for his freedom, he does help ALOT with the kids and I know I couldn't do it alone but still I take it out on him. I get really [censored] off if I have had to clean up [censored] from Shawns room, or puke off my floor knowing that he is sitting at his friends house. I don't know how much longer we will be together. We have talked about it and have decided that if we split he will take Abby (2yrs old) because the both of them ( Shawn is 3) is too much on me right now. I don't even have a job because Shawn has his therapy 5 days a week as well as preschool, I can't find the time. Before I had them I worked 2 jobs and loved it, I loved going to work even though I was making min. wage. It was the having a reason to get up, do your hair, wear make up............now when I get up my hair goes into a ponytail, most of the time without even brushing it first. I haven't worn make up in years and I live in sweats. I have gained like 20lbs since the kids which doesn't bother hubby but it bothers me alot. Boy do I ever sound crazy..........sorry for going on and on, I'm in a mood, hubby is teaching tonight, kids are finally in bed, and I needed to vent! Where are you from? Too bad you didn't live here, we could swap nights so we both could have a night on the town!! thanx for listening, or reading I guess...LOL

Re: Welcome to the new Autism Spectrum Disorders f #198697
09/15/05 04:15 PM
09/15/05 04:15 PM
Joined: Jul 2005
Posts: 27
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anifsj Offline
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anifsj  Offline
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Posts: 27
Hi, don't ever worry about venting on this forum. I think that's why we're all here...for screaming without actually making noise. I live i west Texas, and I teach school all day. I work because I have to, not necessarily by choice. If I don't work, my kids don't eat, trust me. Would you consider hiring a babysitter? Are you in a situation to afford it? A good place to find someone is by posting an ad in the bulletin board at your college or university's medical or science college. A kid about 19 or 20 years old understands about Autism, yet is poor enough to settle for a few dollars an hour. I recently started paying a 20 year old girl to stay with my son. It's not as easy as it sounds, because she basically watches him sleep. I don't trust anyone to handle him awake. She comes in at about 9 pm. and stays until 12. That gives me time to watch a movie or go get something to eat or get a beer somewhere. Once I just sat in a parking lot and cried. I have to work around her schedule (exams, dates, etc), but she's been able to come in a few times. Also, I gave her VERY specific instructions on what to do in case my son should wake up and start up.

If you can hire someone, I suggest you look for someone from the university. If you hire a medical or science related student, you can mention that caring for an autistic child looks great on their resume. This is how I got my babysitter to do this! I never go very far from home, and I never ride with anyone else for fear that I'll get that dreaded phone call and not have a way of getting home.

Try this if you can. Have your hubby charge more for his lessons so that you won't lose your sanity. It is absolutely not fair that you're cleaning up while he gets to see a different environment, talk to people, and exercise.

If we lived nearby...trust me, we'd swap.

Re: Welcome to the new Autism Spectrum Disorders f #198698
09/17/05 03:42 PM
09/17/05 03:42 PM
Joined: Sep 2005
Posts: 24
CALI
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Handy Andy Offline
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Handy Andy  Offline
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Joined: Sep 2005
Posts: 24
CALI
you ladies are too good, you need to explore services for your kids...search the net for the state you live in...take a relative who isn't perfect as a sitter, as long as they dont kill the kid it will be Ok, & GET OUT! get some relief..I used to be in the same situation, housebound & a mess emotionally!!! When my older son was young & not talking my ex hubby & parents all pulled the same [censored] about him not talking & delayed me from getting help! O, my do I empathize..there is a light at the end of a tunnel....

Re: Welcome to the new Autism Spectrum Disorders f #198699
09/18/05 08:59 PM
09/18/05 08:59 PM
Joined: Jun 2005
Posts: 2,454
Los Angeles, CA
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Bonniesa Offline OP
Koala
Bonniesa  Offline OP
Koala
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Joined: Jun 2005
Posts: 2,454
Los Angeles, CA
Ijust got the link in my yahoo alerts for "autism" and this article is from NJ where the Epilepsy Foundation offers respite:

[url=BellaOnline ALERT: For anti-spam reasons, we restrict the number of URLs allowed in a given post. You have exceeded our maximum number of URLs.


Bonnie Sayers - Autism Editor

AUTISM site
Re: Welcome to the new Autism Spectrum Disorders f #198700
09/20/05 02:52 PM
09/20/05 02:52 PM
Joined: Jul 2005
Posts: 27
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anifsj Offline
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anifsj  Offline
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Joined: Jul 2005
Posts: 27
Hi Ladies,
A friend of mine just send me an eye-opening thought and I immediately thought of sharing it with you.

Today, take a moment to see yourself as God sees you.

It's true, oftentimes we forget that God has an image of us, and that it must be a pretty good one if he trusted us with so much.

Take Care and Hang In There!
Angie

Re: Welcome to the new Autism Spectrum Disorders f #198701
09/20/05 04:06 PM
09/20/05 04:06 PM
Joined: Jun 2005
Posts: 435
Flowery Branch, Georgia
musicalmom Offline
Gecko
musicalmom  Offline
Gecko

Joined: Jun 2005
Posts: 435
Flowery Branch, Georgia
Dana (LaciElements) and I had actually had this discussion over in another posting "Finding Adult Time".

I think we'd all be willing to sit for one another, if we just lived somewhat close to each other!

I saw all those orgaizations that you posted Bonnie, but is there anything out there that's like THIS? That we can talk to people and get to know them somewhat. I don't know about the other moms, but I was somewhat overprotective of Michael when he was little. I knew that so much of what he did made little sense, and would make a "normal" baby sitter mad, I didn't want him stuck in "time-out" the entire I was out having fun! Id be in guilt mode for months and never go out again. (I was very fortunate to have family).

Setting up a co-op of moms w/ autistic kids would be a good idea - we'd know what we were getting into, but I have no idea how to start one. Any ideas?


Michelle Taylor
Why me? What did I do to deserve this?
(go on, ask)
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