apologies for the CAPS--Re: REspectfully FOR Ms. MARCIA....Re: http://www.stopcallingitautism.com/ HIGH TEN!!!Re:

[Guest guest]

oh the CAPS did it huh lolol----wow emails msg with caps can really take it over board lol

in my experience its pretty decent...lol

its called reality.....especially when making such comments

my apologies for the heart broken.

To: mb12 valtrex Sent: Thu, February 18, 2010 8:59:24 AMSubject: Re: REspectfully FOR Ms. MARCIA....Re: http://www.stopcallingitautism.com/ HIGH TEN!!!Re:

Knowing Marcia, I'm sure she can take this level of criticism. But please, even if you feel outraged by something you read, try to remember civility, and that everyone is well-intentioned, even if you respectfully disagree with them. To any newbies reading: the tone of the previous message is not, in my experience, illustrative of the general discourse of this group. http://www.stopcall ingitautism. com/ HIGH TEN!!!Re:

Marcia's right...if you think you are alone now, wait till you really have no one. Reaching out, is up to you. In fact, it's all up to you. It's a choice, really. Sometimes, choices don't seem like choices at all. I laughed when I read (Marcia's post) that we don't ask to be in the A-club. -- I must be a glutton for punishment (LOL!) -- I took on my 25 year old brother with Autism, because watching him waste away when I knew he was worth so much more -- I couldn't live with myself. I am one of seven children -- and I wonder how my siblings can live with themselves (and I asked them and they like you, feel helpless. And at the mercy of their spouses.) Our Mom died 13 years ago, and our Dad is very ill. Rob's next stop was a group home that doesn't allow unannounced visitation. (I thought, HOW WEIRD! and I didn't want my brother being abused.)7 months ago, I was brought back to being 16 years old, reliving and watching the same

episode of my life, just with my own child. There he was holding his ears, screaming uncontrollably under the table -- a nightly occurrence when I was young. My father started drinking, and my Mom tried to hold everything together alone. I pulled myself together (like my Mom did - thank God I had her) and went searching. I found Stan Kurtz. My life line and a miracle worker (as far as I am concerned). 7 months later, my son is at 2.5 years of speech (when he lost it all), and thriving. He is amazing, and I learned the protocols very quickly. He shows almost no signs of autism anymore, and very typical. His speech therapist, and mother's day out teachers are baffled that this is the same child. I am not. When the website that said take gluten/casein/ milk/wheat out of his diet, I was a nazi about it. My husband was very skeptical about this -- but we had a history and a bond, and we had trust. I asked for 60 days, after that, I would try what he

thought would work. It took 4 days. Jimmy (my son) stopped banging his head, and stopped zoning out, we had a start. Jim (my husband) and I fought terribly. He too, would get physical w/Jimmy, and having a history helped. I would say things like "that's great reprimanding a child that is obviously in distress and out of control." -- to which he would respond "what the F*!%ck am I supposed to do." -- and I would say, "something your parents didn't do, love him, hold him, tell him that it's going to be okay, and we are going to make it thru." Jim would excuse himself, and come back with a new sense of parental responsibility. He is an amazing father and an even more amazing person.We had many days like that. I also reminded him that connecting with his son was a way to heal his past. My message, "love him more, when you least feel like it." I used to find the two of them, after a terrible morning, wrapped up together taking a

nap.Then I asked something of my husband, not only deal with his son that was having a lot of difficulty, but add more stress of a 25 year old that has a lot if not more of the same issues. He did it. Only and I mean ONLY because he loves me more than he hates the idea of the stress that comes with it. In 6 months of diet w/my brother and other protocols, he is making amazing progress. I am actually surprised at the results myself. We have good and bad days. I mean, really bad days...but what I remind myself is Love is a verb. It's not a feeling, but an action. Sure, you can feel lovingly, but love without action is a static, empty word. Jim and I have date nights -- and I really look forward to these. --Marcia is also correct that food, sex and respect are their basic needs.--I also take the time to make his coffee first thing for him in the morning (he is NOT a morning person), and try to keep his pet peeves from creeping up (like

clutter on the counter.) -- He sees me trying, so when it isn't perfect, he lets it go. He does the same for me. I am pregnant with our third, and Jim is very nervous about this child having the same problems as our Jimmy...but this time, we are armed with information. And he hugged me the other night and said, "No vaccines. Let's keep you healthy so you don't have to take antibiotics. "Recently, my brother and I were arguing. (Like siblings)-- and Jim came in and defended Rob's position (by the way, Rob has never had an argument, much less stayed in for the fight as my husband pointed out, which he said is progress)and said, "Rob, 's blood sugar is obviously low, get her a cookie." -- Rob went and got me a cookie, and said "here, get a grip." Jim and I laughed, and it diffused an ugly fight. There have been many times we have wanted to call it quits. We've been together since I was 19 years old, and we didn't get married (on

paper)until 1 week after Jimmy was born. (I'm 38 now. Jimmy's three) We only got married because Jim didn't like the idea of having to sign paternity paperwork -- he said it was humiliating. Why couldn't he just have his name on the birth certificate? Marriage was never a high priority for either one of us, because, quite frankly, we didn't know what a good one looked like. We still don't know. I think it changes as each person changes. It's dynamic, not static. Part of "growing" up, means taking responsibility for your part of the mess that has been created. My Mom used to say "here's a shovel, you can dig yourself out, or in, you decide." -- OH how I hated that saying...but I won't lie, I will definitely use it on my kids! Sometimes there is just a mess to clean up, and the fault isn't readily apparent, get crackin'. It's easier to attack the problem than attacking the person. Attacking people solves nothing and wastes time. My Mom also used

to say "for every 100 people hacking at the leaves of evil, there is only one hacking at the root. Be the one hacking at the root."I miss her terribly. I know that if she didn't die, Rob's life would have been very different -- but I would have been different too. In her death, I learned much about life, and how short it is, but I also learned how to take a real bad situation, and turn it into something wonderful. Making Lemonade...it starts with the decision to make it in the first place. and sometimes, you just have to start over and making the decision not to give up. (Think about Dyson the vacuum cleaner guy...something like 4000 tries...that' s perserverence) My Mom used to say "it builds character." -- when I failed miserably. Or "be the change you want to see in others." when I complained about this person or that person and when I was "woe is me!" -- OH THE LIST GOES ON AND ON! and sometimes I wish she would get out of my

head...but she hasn't, and it's made the last 13 years bearable. If you need a pity party -- I am excellent at throwing them. I can even bring refreshments. Just tell me what you are allergic to (or the participants allergies), and I will make it happen. (Rob is allergic/intolerant to over 50 items -- so we all eat Rob's menu...it's been a challenge, but doable!)I live in TX now but my husband is a pilot, so I can travel. I just have a whole lot of people that come with me...(little ones that whine, cry, laugh, and ask the same questions over and over...) >> Kerrie,> > It is important for you to reconnect with your husband or you will be doing> this nightmare alone

and with less financial support. Start treating your> husband like he is the most important thing ever and you care about him> deeply and complimenting him on things. (ABA works on husbands too.)> Sometimes this makes you remember what you liked about him in the first> place > > > > Guys are simple creatures. A lot easier than us. All they want is food,> sex and respect. If you treat him with respect rather than anger even if> you don't feel it, it will make him change and you will be amazed at the> difference in your marriage. We all need to feel valued and loved. I know> how hard it is when you are exhausted and you feel your partner is not doing> the best for your kid. I used to have major issues with my husband and we> almost didn't make it because of . The stress was enormous. But now I> think we could make it through anything and we did.

> > > > I am including the summary of a chapter from my book I am in the process of> writing so you can see how not alone we are in the issues of husbands and> sick kids. I hope you and your husband can survive this. Doing this alone> would be even worse than the fighting. Call me if you need to vent.> > Marcia> > 805 497-8202> > > > Here is the chapter summary:> > > > > > "Sometimes we are too busy mopping the floor to turn off the faucet" ~> Author Unknown> > > > > Chapter 11> > Family Dynamics…Why 85% of the Marriages with Children with "autism" End in> Divorce> > ***Note: At the end of this chapter is a sidebar written by , 's> dad. > > I talk to many parents from the NIDS list serve (an online

group of people> who have loved ones with "autism"). Originally this group started as a> result of Dr. Goldberg's medical treatments for "autism", but now not all> members are his patients. The group has evolved and this discussion group> covers everything from new medical research to how to deal with schools and> other everyday issues associated with our children. It is almost a support> group for parents. I read all the posts just in case I can help those still> immersed in the trenches. There are some amazing people in the group.> They know much more about the medical than I do and I have learned so much> from them. It is funny how we can talk to each other about so many things> we would never admit to anyone else. I think it is because we are all in> the "A" club and understand how difficult it can be living with our> children. We would die for our kids and love them

more than anything, but> at the same time hate them for creating this horrible situation in our> lives. > > One of the biggest problems we have to face as parents is dealing with the> stress these kids put on a family and marriage. There is a reason so many> marriages with our kind of kids end in divorce. > > The following is an example of a story a mom privately wrote me off list> retelling her frustration with all the problems in the family created by> living with a child with "autism": > > "Tommy (changed the name) knocked over his dresser last night and my husband> lost it. He called our son an idiot and a retard and he said he hated him.> He said we can't have a normal life with him around. He said all he can do> is eat and poop. He can't even have a normal conversation. "> > She ended the email with "Thanks for listening to me. I

know you> understand. When your son used to bite your daughter, how did your husband> react? I hope you have a supportive husband."> > This is how I answered her:> > "I do get it. There were many scenes like this in our house. These kids put> a tremendous stress on a marriage. We all lose it, even us moms. We cry,> while men tend to get mad. The difference was that when I lost it, I knew I> still loved my son. But when my husband lost it, I felt like I had to> protect him from his own father. There were times when he was too physical> because he was at a loss as to what to do. In the early days when nothing> else worked, I even tried the occasional smack, although I never used this> method on my daughter. Back then I was so frustrated I tried anything, even> though it wasn't the right thing to do. Although men are different from> women, he feels the

same helplessness that you do. Your husband doesn't> know what to do or how to help you or your son, so he reacts. > > We were usually at our best when we had a plan on how to do things,> eventually the plan would go out the window and we would have a scene like> you described. We almost didn't make it through this hell. Try not to hate> your husband too much after these times. (Easier said than done.) If you> guys survive this, your marriage will be strong enough to withstand> anything. Since we made it through the tough years, we know we can> overcome anything. Your husband is hurting as much as you are and feels he> has to protect you too. As a result, he doesn't talk about his fears. We> can't talk about our fears to them because they just get upset. What a big> mess these situations with our children create. Please call me if you just> need to talk. And

if your husband wants to talk to mine that's okay too. "> > Side Bar -- 's Dad on Marriage and Family> > I think there are several aspects to what a child with "autism" does to a> family. First of all, there is the loss of the dream. Every parent,> depending on what baggage they bring to the family, has a dream for their> child. It may be the lead in the high school musical, scoring the winning> touchdown, or going off with friends to the prom. It may sound unimportant> in the larger scheme of things, but you are crushed at the prospect of> knowing that you are no longer in a position to even hope that these things> may happen. The doctors tell you that your child may eventually have to be> institutionalized, or at best, live with you for the rest of their life. So> you take your dreams in smaller bites and don't look too far into the> future. You'd be

surprised at the joy you can find in small things. He> talked to a kid at school, he was invited to a birthday party, and he> learned how to jump rope. Next thing you know, you're dreaming again.> Maybe it's not the Heisman Trophy, maybe it's that he gets to play in the> marching band. You can't keep going without the dreams, no matter how> small. > > Even after you start climbing out of the abyss; it is not a constant climb.> Two steps forward, one step back. Sometimes two steps forward and three> steps back. That is both frustrating and frightening. But as long as there> is a forward step, there is hope. And as long as there is hope, there are> possibilities. Throughout middle school, high school and even today, > has an occasional meltdown. But the difference is we have hope and there is> always forward movement. > I find life to be at its most

difficult when I have no plan. Not having a> plan occasionally happens with all kids, but it is a constant state of being> with an "autistic" child. What do we try next? Auditory training,> occupational therapy, 3-D glasses (I'm joking about that, although we> actually tried them...), bouncing around from doctor to doctor, feeling that> life was completely out of control. The missteps are frustrating. However,> it is important to have a plan, even though you are always tweaking it. > > > And then there is the resentment. Who do you blame for this? Who carried> around this bad chromosome? Marcia's family is a little weird, but, wait a> minute, so is mine. I found myself being very angry about this. We had no> direction, my daughter was not getting the attention she deserved, and I was> angry at . I smacked him when he misbehaved, and I see now that I

was> just trying to get control of a situation over which I had no control. It> didn't work and it was the wrong thing to do. I resented for what he> had done to our lives, and then I felt guilty for resenting this lost and> innocent child who was completely overwhelmed by the world around him. And> my progress out of this was much like 's, steps forward and back.> I guess what I'm saying is that if you let the loss of your dreams and hope,> the lack of control, the resentment and guilt over the resentment take over> your life, you cannot make it out of this. Life becomes a series of small> bites, small successes and hopefully only small setbacks. When you come out> the other side of this, your family is better for it. My daughter is a more> generous, giving, and tolerant person for having helped take care of my son.> My wife will help anyone, anytime with

anything. As for me, I'm just lucky> to have them. > > ²>