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  • In the face of Autism

    14 posts, 11 voices, 1095 views, started Sep 2, 2008

    Posted on Tuesday, September 2, 2008 by Desi~lu

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    • Aquamarine
      Offline

      Hi, my name is Desiree‘.  I have a child with autism, he is eight years old and a wonderful son, but very challenging at times.  Does anyone else have a child with autism?



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        • 0 votes vote up vote up

          Cath20 wrote Sep 2, 2008
        • My nephew is 16 and has Pervasive Developmental Disorder, which is on the autistic spectrum.  It has been a very, very challenging road for my sister and her husband, not to mention their two other sons.  

          After years of sending him out of district for intensive learning, as well as fine- and large- motor skill therapies, he is very high functioning.  This summer, he began a boarding school for special needs students in Delaware.  

          There was a lot of fighting with the school districts to pay for my nephew’s learning.  Schools often want to keep kids in-district with an aide.  But my sister felt that having him go to special needs schools that had teachers with special autistic training, my nephew would learn to socialize and interact more, as well as realize what was acceptable behavior, rather than sit mutely in the classroom and be ostracized by the other students.

          I don’t know where you live, but if it’s in NJ, there the Center for Outreach and Services for the Autistic Community—COSAC.  [Link Removed]

          It might be helpful.  Good luck....


          Cath20, Your links have been removed, please consider upgrading to premium membership.



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          Desi~lu wrote Sep 9, 2008
        • Thank you for your input.  My son is actually high functioning autism.  He can’t read yet, but is a math whiz.  He only started talking to where others could understand him at age 4 1/2 so it’s hard to imagine him reading when he has only been talking half his life now.  LOL

          He’s doing great and I done my own form of therapy with him when he was younger.  He can’t stand change, so since he was very young, I have always changed things around.  I’m so glad I did that with him, because he deals alot better with change now, then he used to and I have a friend that has a son with autism that can’t stand change at all either and he is only a year younger then my son.  He’s not doing near as well as my son.  I have tried giving her tips, but she is not ready to accept that and just finally quit denying her sons autism a year ago.



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          Debby81 wrote Sep 17, 2008
        • Hi, my name is Debby, I have a son about to turn 7 with moderate to severe autism.  He was diagnosed at 18 months, and we’ve been fighting for him ever since.  He’s absolutely beautiful and so sweet, but still not potty trained and didn’t learn to feed himself until nearly 6.  He knows words to label things but can’t really use them for expressive language, so he gets very frustrated and has terrible meltdowns.  He breaks furniture, knocks doors off the hinges, hits himself and others, and then goes back to being his precious self.  It is sometimes hard to go out in public or crowds of people because a tantrum might happen.  We love our son sooo much, but sometimes I have to sit and cry because I wish it was easier for all of us.

          I feel for you and know what you are going through. As they get older, people look at them a little differently, like we should be able to control our children because it’s not an obvious disability and few people recognize what’s really going on. What keeps me going is remembering that he’s my sweet baby and it doesn’t matter what other people think at all.  I am his protector and that’s all that matters.  It is very important for you to find someone you trust to watch him so you can get a break for yourself every now and then, don’t feel guilty, just go get that pedicure or sit at Starbucks for a few minutes, you deserve it.  I have found good providers on my county website and also on babysitters.com, which is run by zipcode and costs about $10/month.  Hang in there!



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          Beannkoch wrote Sep 21, 2008
        • Hello there!  I am just new to this site.  My son as Asperger’s Syndrome.  The mild form of autism.  It is combined with generalized anxiety as well.   I am looking forward meeting everyone here and read and learn about our wonderful and unique kids!



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          Dell58 wrote Sep 23, 2008
        • Hi,

          Im Dell. My 11 year old son sounds very much like yours. He talks, is a whiz at several things music, duplicating what he hears and memory stands out right now. He went thru a lot of changes over the years but he’s high functioning and very much “looks” normal. I use that terminology because when I tell people he has autism, they almost alway respond with..you cant tell, he doesnt look it.” I didnt know it had a look lol. He’s been potty trained since he was 3 (just in time for school) Feel free to send me messages whenever you want.



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          Hrivas wrote Oct 4, 2008
        • Hello Desiree and Ladies!
          My 2 year (+3 months) old was just diagnosed with Autism. He is non-verbal. He has lots of repetitive behaviors and minor tantrums. The primary thing that concerns me is that he can’t communicate. And when I communicate to him, I think he only understands me 50% of the time. But its still frustrating because he doesn’t respond! I’ve looked into baby signs, but I can’t hold his attention long enough for him to see me making sign language. He does great with a fork if the food is already in bite size pieces. He Can’t stand his high chair so we got him a booster seat. Right now, my county is paying for a special ed teacher to come once a week for 1 hour. The psychiatrist who diagnosed him said that wasn’t nearly enough what he needs. So I am searching high and low for extra help. All I hear and read is “Early Intervention“. But there just aren’t enough qualified people out there. Also, I was at a parent group this morning and I got educated on Special Needs trusts. If you go to Wikipedia, it tells why they‘re important to establish. I’m calling our estate attorney first thing Monday to take care of that! I welcome any feedback!—Heather



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          Desi~lu wrote Oct 6, 2008
        • Heather,
          Your son probably understand more then you think.  Children with autism have a hard time verbalizing things,  but are very smart.  I know quite a few children with autism and they are all very smart.

          My son didn’t talk audibly until he was around 4 1/2 years old.  One thing that really helped before he learned how to talk was picture cards.  I went around taking pictures of him drinking from a cup, sleeping in bed, taking baths, etc.  Just of everything that we always did.  I laminated the pictures and put them on a big ring.  Then we started working on communicating in that way.  After a few months it was a God send, because we carried those picture cards everywhere and he could show me him drinking if he wanted a drink, or show me the picture of him eating if he was hungry.  It took him a little while to get the consept, but I was very persistent with it and it paid off.  I would also verbablize what he wanted when he showed me the pictures.  I really think that is what helped him with his speech.

          The other thing I did for my son that is proving to have been a good tool, is I would take him to McDonald’s play land weekly.  He was scared to death of people and children.  He would hit the kids if they got close to him and I would talk to him calmly and tell him that wasn’t okay.  Dante’ didn’t like change and I was always changing things around on him.  I would drive home a different way or whatever and it has helped him alot now that he’s older.  Challenging yes, but it’s starting to pay off and Dante’ has grown by leaps and bounds in the last couple of years.

          My son has a disability, but it doesn’t have him.  He has to live in a normal world, if you want to call our world that. I have to give him the best tools I can so that he can survive in a normal world with a disability.

          Hopefully some of this advice will help.  My son is 8 years old and goes to the public school.  He still has speech problems, he’s delayed in many areas, but he also has progressed tremoundously and that is all that matters to me.  He’s a wonderful child and the most loving child I have ever been around.  I feel truly blessed that God trusted me enough to take care of such a child as Dante‘.  Not everyone can handle children with autism, they take alot of time and patience.  

          If you ever want to talk or just need an outlet, I’m here.  I will respond to each e-mail.

          All you women with special needs children are to be commended.  It’s not an easy job and God has entrusted us with this job.



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          Encee wrote Dec 18, 2008
        • Hey everyone

          My boy, Corbin, is 16 with moderate to severe autistic problems.  His was more of a problem with his speech not progressing rather than never developing.  And his skills are varied in other ways too.  

          I know what it is to have holes in the walls, broken window panes and TVs knocked off a table.  And at this age, that kind of venting can really be damaging to the home.  He doesn’t   do any serious self-injury aside from squeezing his sides until they get bruised, but that thankfully is not very often.  Interesting how a child instinctively knows things though.  My son will grab my husband’s arm and squeeze like crazy, but not mine or my daughter’s.  He knows his dad is more rugged and can handle it.  

          At this point my son is so tall that I have to do a little jump to get the hair gel through his crew cut, but in spite of it all, I see a boy with a heart of gold as well.  I see the times when he looks truly upset that he wasn’t able to say something clearly enough for us to understand.  I know he tries hard and that’s what matters.  

          At present, I’m implementing the Feingold Diet, hard to do at this time with baking going on, and I’m also introducing a variety of amino-acid based supplements that have a lot of potential.  It’s too soon to tell, but maybe, just maybe......

          Has anyone ever listened to Bob Proctor?  I love it when he quotes Winston Churchill saying, “NEVER, NEVER, NEVER, NEVER, NEVER.....GIVE UP!”  That’s the spirit you know!

          Take care everyone!

          Nancy



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          Suzanne Fagan-Velis wrote Jan 14, 2009
        • I’m new too!  Our son Jake is 8 and Autistic.  He was diagnosed first at 22 months old with PDD, then with Autism at 2 years old.  He is high functioning, reads and writes at his grade level and only recently has become very social.  He began speaking at 11 months old, then stopped at 18 months.  I personally feel it had something to do with his vaccinations but as many have tried, we cant prove it.  With alot of help from Early Intervention and a Speech Therapist, he started talking again on his 3rd birthday.  So I guess compared to most we have been lucky, but we still deal with behavior issues.  I am looking forward to trading ideas and stories with other Moms!  ~Suzanne  ( =



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          Dell58 wrote Jan 14, 2009
        • Amazing how most of our diagnosis stories seem to be almost identical and “they” still wont acknowlege that theres something wrong with the shots!! So, being one person I try to do what I can do as an individual. I talk to as many pregnant moms as I can get to listen about childhood vaccines. I never say Dont immunize. What I tell them is, you have a voice and an opinion about what happens to your babay...use it! I think the schedule of shots needs to be revised or thrown completely OUT. That worked when there were what 10 or 12 shots within the first 12 to 15 months? The number of required immunizations in this country has multiplied greatly in the last few years, one or 2 of them beginning as early as just out of the womb soon! I just thinks thats CRAZY!! In my opinion,things seemed to have changed right around the time the combo shots came into play. Stretch it out for as long as need be. They wont be going to school for at least 3 years anyway so whats the hurry?. (I know some moms go back to work sooner and daycares have a criteria :(  Insist that you will not allow your child to get more than one shot a week, every 2 weeks whatever...document how your baby reacts in the office, at home, how the site looks and feels and anything else behavorial afterwards for at least the 3 to 5 days afterward. WRITE IT ALL DOWN!!!! Also, ask for manufacture’s (of the drug) names, lot #’s and dosage amount that is being injected. Get it all in writing and ask to see the vial and the syringe to verify the info matches up. MAke them give it to you BEFORE they stick your baby! Let them call you the paranoid parent, autism is a life long disorder and one day you wont be there anymore to make sure the world treats your child fairly. Be willing to do what you have to do to at least try to ensure that your baby gets a fair chance at a normal healthy life. If I only knew then what I know now, Id do things so much more differently. I love my son like he is but what will happen to him when Im gone?

           Here’s another thing Ive learned about having a special needs child that you may be interested in knowing. Prior to your child becoming 18 years old, you will need to petition the courts for GUARDIANSHIP of your own child. It doesnt matter that you are the mother. Once a person becomes an adult, they have the right to make decisions for themselves. Should he/she NOT be capable of doing that, someone else will have to and that doesnt automatically mean youre nominated for the job! Its a probate court issue, so check your county probate court’s web site or office for more information about that so that youre made aware before you HAVE to become aware.



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          Farmmom wrote Jan 25, 2009
        • Hi ladies!  I do not have a child with Autism, although I do have three children in Special Ed.  I am a Para Educator who works with Special Needs children in middle school.  I have worked with many children with many disabilities over the last six years, and I wanted to share one thing with you all.  The children who succeed the most are the kids who have parents who advocate for their children.  YOU care more about your child than anyone else, and YOU have to be the one who gets in the ring to fight for what they need, deserve and are entitled to.  Don’t give up, and don’t let anyone tell you that it can’t be done.  You CAN do it!

          My thoughts and prayers are with each and every one of you.



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          Encee wrote Jan 25, 2009
        • I have some thoughts I’d like to share with all of you this evening.....

          One of the things I have noticed, more and more as my son gets older (he’s now 16), is that there is something that is usually missing from the information we receive about our kids.  I’m talking about the articles about the research, the new approaches to education, therapies, biological treatment......it’s a very long list.  But, there is one thing that seems to be lacking time after time.  We‘re advised about a great many things regarding our autistic kids.  But, so far, I have yet to read anything about being proud of your child just the way he/she is.  

          I realize that professionals have a job to do.  And so many work hard to help.  And yet, this is such a basic thing that it seems to be overlooked.  Our kids are much more than statistics and a line item in the school system’s budget.  They are our children. Part of us.  And, until someone somewhere comes up with definite answers about treatment, we should celebrate all the great things about our child.  

          I am speaking as a mom to a son who is at the severe end of the spectrum, so I have, pretty much, seen it all, when it comes to autism.  There are a few of the more challenging behaviours that my son does not exhibit.  But not many.   And I have worked myself to exhaustion many times during the past 12 years or so, and have never seen any form of treatment reverse or even control my son’s autism.  

          Little by little I began to notice how beautiful and talented my son is, in his own special way.  The years of work have been worth every second, and yet, even though nothing has truly brought about a miracle, I find my son to be a miracle in his own right.  He’s a fighter, and a survivor, in ways we as parents can only imagine.  And I am proud of him, as he is, and for who he is.  

          I think that would make an interesting footnote to any of the studies!  

          Have a good evening everyone!



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