Guest guest Posted September 21, 2009 Report Share Posted September 21, 2009 Thinks get bad and things get better. The hardest years for me were the teen years altho 6-10 was not a picnic. Now that Elie is an adult, things are MUCH MUCH better. HE is still growing and learning. So I guess I would say that consider it an ocean (ASD that is) that ebbs and flows with some really bad Sunamis possible but for the most part pretty in and out and measurable. The biggest thing to save your sanity IMHO is SIMPLIFY> Reduce anything that you can. Create a warm but clutter free houe. Figure out alarms, locks, gates to protect you from constant adrenalin rushes. Use a schedule and structure as your saniaty crutch and it will help your son as well. (And a lot of this is looking back to IF I HAD ONLY DONE THIS SOONER). My biggest fears were losing Elie. Yet it took until he was 21 to MOVE to house I could surround with a fence and at the bottom of a ridge where geographically he could and would go no where to rest my mind on losing him. And I have lost him many times over the years. Let me say, that losing him in a cornfield was not one of my finer moments, but losing him in a city where I was a stranger was almost as bad. On Mon, Sep 21, 2009 at 6:15 PM, Dana Lewellen wrote: > > > Okay, I'm new and I'm getting very scared, but you bring up something I've > been wondering about. Does autism get progressively worse? I'm sure there > are many factors - general uniqueness of each child, early intervention, > response to biomedical interventions, response to medications, etc. - but, > is there a general trend toward getting worse? Is there a point when it > seems to level off and the kids seem to maintain a certain level or improve? > (I'm trying to be an optimist so I'm looking for a bottoming out and then > just improvement from there, but that's probably not realistic.) Aidan is 3 > going on 4 and the thought that he's just going to get worse and completely > retreat within himself really scares me. > > Dana > > > > From: gldcst <gldcst@... <gldcst%40comcast.net>> > Subject: Re: /Margaret > To: > Date: Monday, September 21, 2009, 5:56 PM > > > > Margaret > > >>>>> have all been in 'that age of frustration' ....some kids get out of > it and > others stay in it. Our worst yrs with Gareth were between the ages of 5-10. > I > was ready to be admitted to the loony bin.<<<<< > > Amen...If the cavalry hadn't arrived when she was 10 in the form of > Medwaiver and medicaid, repite, PCA, ABA etc. I would be the one on > Risperdal! The leader of our DS organization told me once she started to get > all these panicky calls from Moms of regular DS kids around age 5 or so. I > wonder if many of them are just reaching the terrible twos. Watching > get sucked down that black hole of Autism at 2-4, like the Devil himself was > pulling with all his might and then that total wackiness at age 5 or so was > something else. Not to scare anyone new (shhhh...be afraid, be very > afraid...just kidding...sort of). > > >>>>To me, Risperdal was a gift > from God and our lives turned completely around. I am sorry that all kids > don't benefit from it. <<<<<< > > You of all people know how disappointed I was that it did not work for > ...tried it twice. Just another in the long line of things " natural " , > and medicinal. Thank God it worked for Gareth...I suspect the aforementioned > God knew what difficulties lay in store for you in the future and wouldn't > allow the " nasty, belligerant Gareth " personality to continue. > > >>>>Also, I don't think that *I* have the stamina to > persevere through diets, supplements, ABA, etc. Yes, that is a lazy > attitude, > but that is me.<<<<<< > > OK Margaret...here is where I find it just a little insulting that you are > inferring that I am NOT lazy??!!LOL. BTW I am a TV person...big time these > days. How's that for laziness? It actually had nothing to do with stamina; > it had to do with exactly what you describe in Gareth. Because I happened to > be a believer in allergy, dietary stuff etc. because of my own and dh's > history I started from the getgo with this stuff. I never had to fight to > take off of her favorite foods later on. That to me is a herculean > effort. PLus I kept seeing glimmers of that dang light at the end of the > tunnel. The last real bandwagon I jumped on after burning out from all the > previous ones was the SCDiet. It is an enormous amount of work. However we > were almost already there with GFCF and many more F's. > > spent all day groaning and moaning louder as the day progressed till > at night we couldn't stand to listen to it anymore. And she had become > nasty, belligerant ...violent, and aggressive. I will never forget dh, > after arguing with me about all the expense and time that went into this > diet, the first or second night she was on it (it involved removing rice and > potatoes and some other starches) he came up to me and fell to his knees, > grabbed me around the waist and said " Thank You!! " LOL. I realized then she > had stopped that continual moaning. It was quiet. And it pretty much has > stayed that way unless she's sick. > > After that we were able to initiate a VB program and work on communication > and all. But it was a looooong time coming. > > >>>>I guess that after fighting with Gareth for 10 yrs, I was > glad to have an easy *fix* in my life. He has done so well on meds that I > can't bring it upon myself to 'rock the boat' and take him off them.<<<<<< > > And this is exactly how I feel about her diet. Fortunately we received help > and still have it to do the cooking and prep work. That's what we use our > PCA hours for. I've got an adoable little 24 yo Brazilian student with us > for over 5 years now and she can knock that food outta the park. > > >>>>>> That is why I said I > think I *think* there are different types of autism. I think some are brain > > autism, some are gut related autism, etc. Does that make sense?<<<<<< > > Yes, of course it does. I think there may be cardiac surgery related Autism > (hypoxia), genetic Autism, Autoimmune Induced Autism, Virally induced > Autism, CP related Autism, > Vitamin or Nutrient deficiency Autism, An actual disease of Autism, hearing > related Autism, > Environmentally induced Autism (vaccines, heavy metals) and on and on. I > tend to think of Autism as the *symptom* for which we all agonize to > discover the root cause in each of our kids. > > Sherry > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 For some reason I just now read this from ; It is excellent advice and I like the ebb and flow metaphor. And I totally get the " If I had only done this sooner " thing. When we were going thru all this nonsense I remember constantly questioning my sanity with thoughts of " normal people just don't live like this " and " does anyone else think it's ok to have their child's room totally empty of window coverings and the TV duct taped to the desk? " . But in that paleolithic era there was nobody to ask. Remember books? and libraries? this was my only source of knowledge. Waiting for months to get a book from interlibrary loan. Gradually piecing together that did have Autism no matter what the " experts " said. I remember reading a book one night when I was up all night with her jumping on the bed and droning Ohohohohohoh for hours...it was called " Autism, a Nightmare without End " . Then there was " The Seige " . Holy Marony. I was terrified. You guys are in such good hands here. So many of us to have your backs and to know deep in our hearts the grief and pain you are feeling. After you get over the grief (not that you ever totally get over it) you tend to develop a sort of dark sense of humor that only we can understand and other folks often find shocking. For example when I read 's comment " losing him in a cornfield was not one of my finer moments, " I spit my unhealthy diet coke all over the keyboard. I personally find the " my child painted his room with poop this AM " stories hilarious and love to reminisce about the bad old days...however I love when I see a dozen responses from other moms who totally understand and get how defeating this is and how easily despair can creep in. I would urge you all to find " friends " here whom you connect with who you can also write privately or phone...maybe moms with kids the same age ......and hang on to each other. You're in for a heck of a ride. Way bigger ups and downs than the average mommies. Sherry Thinks get bad and things get better. The hardest years for me were the teen years altho 6-10 was not a picnic. Now that Elie is an adult, things are MUCH MUCH better. HE is still growing and learning. So I guess I would say that consider it an ocean (ASD that is) that ebbs and flows with some really bad Sunamis possible but for the most part pretty in and out and measurable. The biggest thing to save your sanity IMHO is SIMPLIFY> Reduce anything that you can. Create a warm but clutter free houe. Figure out alarms, locks, gates to protect you from constant adrenalin rushes. Use a schedule and structure as your saniaty crutch and it will help your son as well. (And a lot of this is looking back to IF I HAD ONLY DONE THIS SOONER). My biggest fears were losing Elie. Yet it took until he was 21 to MOVE to house I could surround with a fence and at the bottom of a ridge where geographically he could and would go no where to rest my mind on losing him. And I have lost him many times over the years. Let me say, that losing him in a cornfield was not one of my finer moments, but losing him in a city where I was a stranger was almost as bad. Quote Link to comment Share on other sites More sharing options...
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