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mommyof3gr8boys - Acceptance is the Cure!

City: Harrisburg
State: PA
Country: USA
Member since: Dec 29, 2007
Last logged in: Jul 23, 2008

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Parent, Mother, Occupational Therapy, Speech Therapy, Self-Stimulatory Behaviors, Self-injury

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mommyof3gr8boys's Page URL

http://www.foggyrock.com/MyPage/mommyof3gr8boys

mommyof3gr8boys's Bio

Hi, my name is Christie, I am 28 and have been married to my husband Eric, for over 7 years now We have been together for almost 12 years (high school sweethearts). He is an Electrical Engineer and I am a SAHM but also going to school part time for psychology. We had our first child EJ (Eric Jr) in 2002. He is dxed with PDDNOS, Anxiety, Sensory Processing Disorder, Dispraxia, and an articulation disorder. Quite a lot for a 5 year old boy! He was just dxed this past May. Although out sons psychiatrist prepared us about 6 months ahead of time. They also think he will probably have his dx changed to aspergers when he is a bit older. EJ is very high functioning he is in a regular classroom most of the day. He spends 15 min in the morning in an Autism Support Classroom and 30 mins a week in OT, and 30 mins a week in ST. He also has a TSS with him the entire day (half day k). Besides in school he goes to out paitent OT once a week for an hour, he also goes to a psychiatrist once a month, and has a mobile therapist who spends 2 hours a week with him. We are in the process of learning more about the SCERTS model and trying to implement it.

Our second son Addison is 3.5 he was a premie born a month early, but very healthy! He is our little joker. He is ver small for his age but so adorable. He too has some issues... we are in the process of having him evaluated. His speech evaluation gave him a dx of communication delay and now they are going to be doing and autism eval. for a long time i thought NO ways Addison doesnt have autism. Now, i dont know, I really think we might get that diagnosis again..Hopefully we will know more about it soon. I feel like he has major sensory issues as well and when i do EJs sensory diet, Addison likes to join in. I feel like he sometimes gets lost in the shuffle being the middle child, we try to give him a little extra when we can.

Cohen is our baby he was just born this past August (the day after EJs 5th bday!) he is now 4 months old 15lbs, and has several teeth!! He is so health and we are so happy, we tried to get pregant for almost 2 years. I found out i was going to be having Cohen last christmas eve. I ended up spending all but my frist trimester on bed rest. I then went into preterm labor at 25 weeks (around the time of EJs dx) i spend 2 weeks in labor and on all kinds of meds to try and get it to stop. Finally they were able to and I spend a month in the hospital before being sent home on meds and bed rest for the remaineder of my pregnancy till i had him by c-section. He was my biggest baby at 7lbs 4.4 oz!!

Well that is a quick glimps into my life :)

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So proud!!!!

by mommyof3gr8boys on 04.12.08 - public

A few months ago EJs art teacher sent one of EJs painting to the ARC's Aunnual art show. Well I got a letter today saying, he wond the peoples choice...

New MT starts tomorrow!!

by mommyof3gr8boys on 04.10.08 - public

I got a call from our new MT (mobile therapist) today... She will be coming tomorrow. I already love her. She was so kind and asked me a lot of ques...

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New SCERTS group

by mommyof3gr8boys on 04.09.08 - public

I started a group for people using SCERTS or interested in using it... I started it becuase I want to learn more! hope you join...

Acceptance VS Cure by Sue Rubin ( A different take please read)

by mommyof3gr8boys on 04.09.08 - public

Came accros this article and thought that some of my friends who have a different prespective might enjoy this article...In lite of my recent Don't Mo...

Don't Mourn for us

by mommyof3gr8boys on 04.09.08 - public

DON'T MOURN FOR US
by Jim Sinclair

[This article was published in the "Our Voice," the newsletter of Autism Network International, Volume 1,...

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DON'T MOURN FOR US
by Jim Sinclair

[This article was published in the "Our Voice," the newsletter of  Autism Network International, Volume 1, Number 3, 1993. It is an outline of the presentation I gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

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Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.
But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person. 
Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage 
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with. 
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

"I wish my child did not have autism,"
what they're really saying is, 
"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall 
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true. 
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world. 
And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.

Autism is not death 
Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to. 
But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--

but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at the same time the child being mourned for died. 
You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.
After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it." 
If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

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Take me off your friends list!

by mommyof3gr8boys on 04.09.08 - public

Today I recieved a rude email, requesting that I quit forwarding links of everything I write to this person. I remember a while back Shannon said the...

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5 Little kittens!***pictures now avaliable****

by mommyof3gr8boys on 04.08.08 - public

***I have put up the pictures on my profile of the kittens!****
I was up very late last night, our cat went into labor about 8. The kids were just g...

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Spring Means......

by mommyof3gr8boys on 04.08.08 - public

Spring means playing outside, walks at the park, sunscreen, grass stains, muddy knees, picnics at the lake, fishing, feeding frogs and fish in the pon...

MIL's gift to me

by mommyof3gr8boys on 04.08.08 - public

My MIL called me Friday and said she wanted to sign up to do the ASA Autism walk Saturday, if I was interested. I said YES, in a second. It has take...

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My MIL called me Friday and said she wanted to sign up to do the ASA Autism walk Saturday, if I was interested.  I said YES, in a second.  It has taken my MIL a long time to get to this point.  I remember when EJ was first DXed, her reaction was pretty sever.  She said to me what have you done to my sunshine... he use to smile when he saw me and now he doesnt care!  She said things lilke I did not want to take care of him because I was a lazy parent... That I had turned him into a Zombie.... As well as many other hurtful things... She did not understand Autism, I did not understand Autism.  So, we took a step back and asked them to give us our space for a while.  I started email my mother in law articles I would read about autism, I gave her books she did not ask for.  I spouted my ever growing knowledge every chance I got.  Then, I went into the hospital in preterm labor with Cohen.  I spent a month in the hospital... My MIL helped by picking EJ and Addison up each day from the sitter, and taking them home until their dad got home a few hours later.  She called me on several occasions, in tears sometimes because of EJ.  She did not know what to do and she was scared!  I think this was a true turning point for her... she recently disclosed to me that she now knows and understand EJs autism a lot better and it was during one of the times she picked him up.. He was expecting me and his usual rutine... She was taking him somewhere and he ran in the house and sat on the steps.. She said she could see it in his eyes, the confusion and fear... thats when she accepted it.  So this Saturday will be our first Autism Walk and we are very exctied... my mother in law has raised close to $200!  She also paid for a membership to the ASA for my family (they are very big in our area) Over these past few days my MIL has been expressing these feelings to me about accepting EJs diagnosis and our feelings on Addison having Autism... it has made us much closer and has helped me to not feel so alone.

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Autism, You can't spank it out of me.

by mommyof3gr8boys on 04.08.08 - public

This is a saying I have posted on one of my other pages... However, I would like to pose a question.. Do you ever spank your children who have autism?...

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This is a saying I have posted on one of my other pages... However, I would like to pose a question.. Do you ever spank your children who have autism?  Before we knew EJ was on the spectrum, we used spanking as a tool much more often than we do now... I found myself getting in huge fights with him and I would end up spanking him... Now please keep in mind that EJ is huge of a 5 year old.  He is already the size of an 8 or 9 year old.  I am only 5'6" and he is very strong especially when he is in a rage.  Since receiving EJs dx and learning other ways to manage his issues we have found that we do not need spanking.  I felt a lot of guilt over the years that I was spanking him all the while thinking (and being told) That he needed more discipline or to be giving "an attitude adjustment"  I mean this is how my mom correct me!  When I learned that his behaviors were a direct result of his Autism I was heart sick!  Don't get me wrong I still do occasionally give a quick spank for some things... For instance, Addison one day ran out of a store and was just about to step off the curb and right in front of a SUV but just in time I snatched him up by the arm and whacked his butt.  This was right in front of EJs Case manager... I said I am sorry, but when they do something like that and it scares me, I need them to know its very serious.  She said she understood.  I actually cant remember the last time i spanked EJ, I am glad that I don't spank any more because I remember how it use to make me feel as a child, and I don't want my kids to feel that way.  So I am wondering how many of you spank or don't spank... How many changed your discipline style after your child's diagnosis?

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Developmental Ped VS Psychiatrist ***UPDATE***

by mommyof3gr8boys on 04.08.08 - public

EJ is currently seeing a Psychiatrist for his care, however the only developmental ped in our area is going to be accepting paitents starting this wee...

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EJ is currently seeing a Psychiatrist for his care, however the only developmental ped in our area is going to be accepting paitents starting this week... if I get a referal then EJ will be put on the wait list... When I called to get more info they said i need a referal... I said well do i need one from his regular ped or one from his Psychiatrist... Then she told me that if he has a psychiatrist he doesnt need a developmental ped.  This is the first I have heard this.. which is better a developmental ped or the psychiatrist?  Can we see both?  I would think that a developmental ped would be better because they know more about the body as well not just the brian... what are your opinions?

****Today we went to see the psychiatrist.  I spoke with her about the developmental ped... She felt like it would be a good idea because the developmental ped will be able to detect if there are other things going on...they can also treat his issues with allergies as well that may have an effect on his autism.  SHe did say however, that they would not want me to be mixing medication management so either she would contine to manage his meds or she would let the developmental ped handle all of it.  SO we are going to at least go see her, if she can help him then oh well, and if so then great!

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Wii would like to play

by mommyof3gr8boys on 04.07.08 - public

EJ decided he wanted a Nintendo Wii. Well we dont just have an extra $300 laying around for a Wii so we told EJ he would have to save his money. He ...

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EJ decided he wanted a Nintendo Wii.  Well we dont just have an extra $300 laying around for a Wii so we told EJ he would have to save his money.  He was bound and determined.  Every penny he found on the floor went in his gold treasure box shaped bank.  Soon he had his brother in on the act.  They were change pirates, they would find change in the couch, cup holders, or their dads pockets!  When we were having some behavior issues with EJ, Eric Sr. decided that he would offer EJ dollars for behavior.  So when EJ had a great day at school, home or where ever he got a dollar.  If he did extra work to help me or his dad, arrgued less, etc... he earned dollars.  Well soon peter cotton tail was hoping down the bunny trail and EJ got some cash as gifts from his grandparents and from us.  He added that to the loot.  EJ finally had saved up enough money for the Wii.  Then started the two week quest to find a Wii for retail price!  Once of Eric Sr. coworkers wife works at target.  She promised us as soon as one came in she would pick it up for us, and give EJ her company discount.  Well Friday, Eric Sr. came home with a suprise hidden in his coat.  EJ and Addison went nuts when he pulled the white and blue box with huge letters that read Wii from under his coat.  They were so excited... they jumped around and screamed, clapped their hands, sang songs.  It was so cute.  Since then All three of them (EJ, Addison and Eric Sr.) have been playing Mario Galaxy(which we rented from blockbuster), and Wii Sports.  I really think this system is awesome for our kids.  Its truely inovative.  YOu have to use whole complex body movements to play the game.  Mario Galaxy is a complex puzzle game, that takes paitents, logic and determination to master.  Some people may think why in the world would you get a kid that perservates over video games another video game... but i think you know if he can do his perservation on a game that can help him work on his needs like motor planning, sensory, and help him build on his strengths WHY NOT!!!! On a side note not only did EJ learn a valuable lesson about saving money though all of this.  I also got to see my child truly happy and excited about an ordinary everyday thing.  So much of our lives is spend sumbersed in Autism that we forget to step back sometime and apprechiate the little moments of pure joy that our children are experincing.  Childhood is a beautiful thing!

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Another Movie

by mommyof3gr8boys on 04.04.08 - public

I found another movie clip in my videos...this is a different take on the whole thing... read the description before watching it.......

The Black Balloon

by mommyof3gr8boys on 04.04.08 - public

Movie trailer now avaliable under my videos! Australian film about autism... looks wonderful...

Disappointed with CNN coverage

by mommyof3gr8boys on 04.03.08 - public

I must say i am a little dissapointed with CNNs coverage of Autism. I think its really great what they did... but it seemed to me as though the were ...

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our CNN autism story

by mommyof3gr8boys on 04.03.08 - public

here is the link to our autism story on cnn

http://www.ireport.com/docs/DOC-8339...

What I Wish They Knew About Autism.....

by mommyof3gr8boys on 04.03.08 - public

At first when i saw this post idea, i thought of people who dont deal with autism on a daily basis. But after a talk with a good friend this morning,...

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At first when i saw this post idea, i thought of people who dont deal with autism on a daily basis.  But after a talk with a good friend this morning, I though this would better apply to people who are newly dxed.  What I wish they knew about autism, I wish they knew where to get help and support, what services to provide their children with that would help them the most, because when you are new to autism you dont know where to go, who to turn to or what to do.  It is a scary lonely journey.  Most of all what I wish they knew about Autism is that its going to be okay!!!! It will be a life long struggle but through it all we are the ones blessed to have the beautiful children in our lives.  We are the ones that get to be in this special group of parents.  We are the ones that will experience things that no one else one earth (but us) will ever understand.  Its a special journey, and it you dont have to do it alone.  There are millions of parents and professionals out there who will hold your hand!  I will!

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my part in autism awarness

by mommyof3gr8boys on 04.03.08 - public

For autism awarness month I decided to go on to my cafemom account and post on each of my 30 groups a breif overview of what autism is and how it has ...

Sleep is overrated!

by mommyof3gr8boys on 04.01.08 - public

EJ has always had issues sleeping.. as i am sure most of your kids have. We found out that melatonin really helps him... However, he still wakes up s...

CNN=Autism Aware

by mommyof3gr8boys on 04.01.08 - public

Not sure if this was already posted but... CNN is going to be doing an "autism day" on Wednesday apparently they autism will be the theme. Also if yo...

Raising Awareness within the autism community

by mommyof3gr8boys on 04.01.08 - public

For Autism Awareness month, I have come up with lots of great ideas to help people in my life who are not touched learn about autism. However, I star...

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For Autism Awareness month, I have come up with lots of great ideas to help people in my life who are not touched learn about autism.  However, I started to think what can I do to learn more myself, what can I do to help my friends who are parents of ASD children learn more?  So I decided I would like to host a chat where adults on the spectrum can come together with parents of children on the spectrum or people who work with children on the spectrum (ie people from foggyrock and the like).  We can have an open discussion on what its really like to be on the spectrum from their point of view.  I am still in the early stages of this but would like to have it together by mid month.  If any of you are interested please let me know... email me or you can simply respond to this post.  Once i have all the details i will inform everyone who has an interest.  Also if you think you can help in anyway please let me know... that is if you know adults on the spectrum who would be interested in participating or if you know of a good forum to hold the chat in.  I would like it to be a type chat because some people are uncomfortable speaking or are non verbal.

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New Video

by mommyof3gr8boys on 04.01.08 - public

I posted a new video to my site. Please take the time to look at it. However, if you dont believe in accepting autism you may be offended so please ...

Finally!!!!

by mommyof3gr8boys on 04.01.08 - public

I just got a call from EJs wrap, they have finally found a new MT for him!!!! We are so excited. Our last MT was just not the right fit for us and th...

Why I am so positive

by mommyof3gr8boys on 03.28.08 - public

I think some people wonder how I can be so positive. I have had people say to me Oh I don't know how you do it. I just smile and say love! Some day...

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I think some people wonder how I can be so positive.  I have had people say to me Oh I don't know how you do it.  I just smile and say love!  Some days it so so hard for me to stay positive.  This morning i was dealing will bills (ug) and I was upset about finances and all the things we can afford to do for our children.  Addison walked in and I hugged him and lost it.  I just hugged him so hard and thought OMG two of my babies have autism... What am I going to do.  What if Cohen never speaks!  My heart breaks.  If I don't stay positive things like this will break me.  I have to stay positive because it keeps me sane, it helps me to be able to provide a happy environment for my children.  I am not saying those who cant or don't stay positive don't have a good environment i am just talking about me here!  I speak from a stand point of acceptance because I know that my son needs to know that he is not defective but he is my perfect child.  My life has been full of pain from the day I came into this world.  My children are my entire world they are my everything and I have to stay positive for them.  That is why i do this.  If I only looked at the negative, if i fought everything and everyone all the time it would kill me and i would not be a good parent for my children.  Again this is not in reference to anyone just myself.  I try to be a strong person and these are the things that keep me sane. When my babies sleep and I look at their beautiful faces, I think wow, I am so damn lucky.  How, did i get here.  What did i do to deserve this life, its so beautiful and wonderful!

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The Autism Community Agrees That....

by mommyof3gr8boys on 03.28.08 - public

I think one thing we can agree on is, that every little accomplishment is a huge milestone in our lives. From the littlest thing to something huge it...

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I think one thing we can agree on is, that every little accomplishment is a huge milestone in our lives.  From the littlest thing to something huge its all important.  I think thats so important because so many of my friends with NT kids don't appreciate the little things.  When EJ wrote his name at 5 i was so happy, when he tied his shoes for the first time.  Everyday he goes by not having a bathroom accident these things are huge.  Someone with an NT child might think OH your 5 year old shouldn't still be wearing diapers at night or having bathroom accidents regularly thats awful, but they don't know!  They don't know why when EJ sits and eats his dinner with out smearing it everywhere, spitting or gaging or all out refusing to eat, why I praise him and reward him.  They don't understand why the little things are SO SO important to us.  SO that is what we agree on no matter how small everything little thing our children do is like climbing a mountain, to them its a struggle and when they do it we beam with pride and smiles and we should!!!!!

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Addison

by mommyof3gr8boys on 03.26.08 - public

My Addison who is going to be 4 this June, was recently screened for speech by the IU. I expressed to them for months my concern that he too has auti...

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Why I'm Here at Foggyrock.....

by mommyof3gr8boys on 03.25.08 - public

I am here for lots of things. What drew me to the site was the chance to meet other parents who were going through the same types of things I am goin...