Re: 'the child i lost'

[Guest guest]

I was shuffling through a drawer and ran across a picture of my son in first grade, he was six years old. He had on his bright yellow dinosaur shirt, and in his little hands he was gently cupping a newly born chicken that was covered in fluffy, butter-yellow feathers. His first grade class had hatched them as part of a project on life cycles. He was sporting an ear-to-ear grin and the joy on his face was tangible! I could see the excitement he was feeling in that unguarded moment... and I broke down.

He was such a pleasure to parent in those earlier years, in spite of his inability to transition, or to pick up social cues and his awkward social interaction (AS traits), but against all odds we persevered. It would never have occurred to him to lie or try to deceive anyone for any reason. He was honest, single focused, worked hard to to meet others expectations, and he was an extremely devoted friend. He had the memory of an elephant, he could spell words like nobodies business, and he was a whiz in math. He had a BIG heart and though he didn't laugh often, when he did it would tickle him to his CORE and he would laugh uncontrollably until he was on the floor! He delivered the funniest one liners, he was always polite and respectful toward everyone and was well liked by all his teachers and peers - though the ones who 'got him' were few. I could go on and on, suffice to say I was

PROUD he was my son.

That was ten years ago and that little boy is 16 now. I scarcely see a glimmer of the boy in that picture and gone is the sheer joy he was able to feel, that was captured in that moment. Four years ago the way aspergers manifested in him changed. His undaunted devotion as a friend, combined with his inability to transfer his social focus, took him down a dangerous path of drugs and alcohol, rage and violence, crime, and truancy. He hasn't spoken to me in three years (with the exception of verbal abuse) and I haven't set eyes on him in a year and a half. I can't begin to describe the devastating anguish I've experienced.

On Tuesday that sixteen year old, my son, will be admitted to a Residential Treatment Center, for an unknown period of time but potentially up to two years. What happened?? Where is that little boy, so full of joy that I see in that picture?....... To find him, I don't have to look any further than my heart.

--- On Thu, 2/11/10, rebecca1749@... <rebecca1749@...> wrote From: rebecca1749@... <rebecca1749@...>Subject: ( ) 'the child i lost' Date: Thursday, February 11, 2010, 10:03 PM

ok- here's a not practical, but very emotional question. CAN ANYONE RELATE TO THE FOLLOWING FEELING:my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have

I really gone batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he was less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.------------------------------------

[Guest guest]

I really understand what you mean. You're not crazy. My son was "exceptional" in most areas until just after his 1-year-old birthday and then things began to change. For example, he was able to pick up little things with his pincher fingers at an extremely early age but by the age of 3.5, when he was evaluated by an Occupational Therapist, he was deficient in fine motor skills. It really hurt to realize it, too. Now that my son is 13, I feel a lot better about things. I can see so many other things that he is (smart, funny, determined, giant heart) that the Aspergers used to eclipse in many ways when he was younger. I think, in the early years, it's like throwing a rock in the pond and then waiting for the equilibrium to happen. The ripples are a lot bigger when the rock is first thrown in. Those early years were tough, but things get better. Parenting is a

roller-coaster for NT kids. For our children, it's like a roller-coaster on steroids. Hang in there.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: "rebecca1749@..." <rebecca1749@...> Sent: Thu, February 11, 2010 10:03:24 PMSubject: ( ) 'the child i lost'

ok- here's a not practical, but very emotional question. CAN ANYONE RELATE TO THE FOLLOWING FEELING:my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone

batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he was less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

[Guest guest]

Kate, I am so sorry to hear that. I hope your son gets the help he needs and you can have a relationship again with him someday.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: Kate Stone <katesdishes@...>Subject: Re: ( ) 'the child i lost' Date: Friday, February 12, 2010, 7:57 AM

I was shuffling through a drawer and ran across a picture of my son in first grade, he was six years old. He had on his bright yellow dinosaur shirt, and in his little hands he was gently cupping a newly born chicken that was covered in fluffy, butter-yellow feathers. His first grade class had hatched them as part of a project on life cycles. He was sporting an ear-to-ear grin and the joy on his face was tangible! I could see the excitement he was feeling in that unguarded moment... and I broke down.

He was such a pleasure to parent in those earlier years, in spite of his inability to transition, or to pick up social cues and his awkward social interaction (AS traits), but against all odds we persevered. It would never have occurred to him to lie or try to deceive anyone for any reason. He was honest, single focused, worked hard to to meet others expectations, and he was an extremely devoted friend. He had the memory of an elephant, he could spell words like nobodies business, and he was a whiz in math. He had a BIG heart and though he didn't laugh often, when he did it would tickle him to his CORE and he would laugh uncontrollably until he was on the floor! He delivered the funniest one liners, he was always polite and respectful toward everyone and was well liked by all his teachers and peers - though the ones who 'got him' were few. I could go on and on, suffice to say I was

PROUD he was my son.

That was ten years ago and that little boy is 16 now. I scarcely see a glimmer of the boy in that picture and gone is the sheer joy he was able to feel, that was captured in that moment. Four years ago the way aspergers manifested in him changed. His undaunted devotion as a friend, combined with his inability to transfer his social focus, took him down a dangerous path of drugs and alcohol, rage and violence, crime, and truancy. He hasn't spoken to me in three years (with the exception of verbal abuse) and I haven't set eyes on him in a year and a half. I can't begin to describe the devastating anguish I've experienced.

On Tuesday that sixteen year old, my son, will be admitted to a Residential Treatment Center, for an unknown period of time but potentially up to two years. What happened?? Where is that little boy, so full of joy that I see in that picture?.... ... To find him, I don't have to look any further than my heart.

--- On Thu, 2/11/10, rebecca1749@ ymail.com <rebecca1749@ ymail.com> wrote From: rebecca1749@ ymail.com <rebecca1749@ ymail.com>Subject: ( ) 'the child i lost' Date: Thursday, February 11, 2010, 10:03 PM

ok- here's a not practical, but very emotional question. CAN ANYONE RELATE TO THE FOLLOWING FEELING:my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have

I really gone batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he was less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.------------ --------- --------- ------

[Guest guest]

I can relate, I think everyone grieves with this kind of diagnosis. I get sad and worried when I think about my son's future. What will it be like for him? Will he ever have friends and be able to make his own way in the world? Somedays I think yes, somedays no.

All you can do is your best for him now, help him with his issues, and get him as much professional care as you can. If he is never smiling or happy at 4 years old, maybe you and he need more therapy or he needs medication. Think about it, and find a way to get him back. Don't give up, keep fighting, and I'll give you a virtual hug anytime.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: rebecca1749@... <rebecca1749@...>Subject: ( ) 'the child i lost' Date: Thursday, February 11, 2010, 8:03 PM

ok- here's a not practical, but very emotional question. CAN ANYONE RELATE TO THE FOLLOWING FEELING:my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone

batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he was less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

[Guest guest]

, I too have had the grief of the daughter I lost when I

look back at our relationship and see it now that she is older.

She changed in high school really. In my opinion anyway. Much

less free, much less laughing, all that.

I LOVE your " roller coaster on steroids " . That is it for sure!!

I am now waiting for a comeback. Ever hopeful. Jo

>

> I really understand what you mean.  You're not crazy.  My son was

" exceptional " in most areas until just after his 1-year-old birthday and then

things began to change.  For example, he was able to pick up little things with

his pincher fingers at an extremely early age but by the age of 3.5, when he was

evaluated by an Occupational Therapist, he was deficient in fine motor

skills.  It really hurt to realize it, too.  Now that my son is 13, I feel a

lot better about things.  I can see so many other things that he is (smart,

funny, determined, giant heart) that the Aspergers used to eclipse in many ways

when he was younger.  I think, in the early years, it's like throwing a rock

in the pond and then waiting for the equilibrium to happen.  The ripples are a

lot bigger when the rock is first thrown in.  Those early years were tough, but

things get better.  Parenting is a roller-coaster for NT kids.  For our

children, it's like a

> roller-coaster on steroids.  Hang in there.

>

>

>

> " Over-optimism is waiting for you ship to come in when you haven't sent one

out. "

>

>

>

>

> ________________________________

> From: " rebecca1749@... " <rebecca1749@...>

>

> Sent: Thu, February 11, 2010 10:03:24 PM

> Subject: ( ) 'the child i lost'

>

>  

> ok- here's a not practical, but very emotional question.

> CAN ANYONE RELATE TO THE FOLLOWING FEELING:

>

> my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at

old photos and videos which i havent done in a while. there was a video of my

son when he was just 2, talking animatedly to the camera and even hugging his

doll. I had a meltdown. my husband couldnt understand, he said 'he's different,

all kids grow up, they're allways less cute at 4 then at 2' but he didtn see

what i saw. i saw a kid who's pervasive disorder had not yet fully taken over

and i saw a glimps of a child, my child, that i feel i have lost. in that video

i saw a small boy who could still love and feel, and LAUGH. he was laughing, so

freely. he bearly ever does that now. worse than the feelings themselves, was

the realization I'm alone in feeling them and my husband thinks im crazy. does

anyone understand? is it a mother thing? or have I really gone batty? I know he

was born with what he has, but it takes time for these things to fully mature

and i honestly think

> when he was younger he was less pluaged and just, lighter, freer, happier. i

love my son - for who he his today- with all my heart. am i such a bad mother

for missing the little boy who would giggle and smile? the boy that once in a

while let me feel like a good mother? lately i feel less than a mother and more

like a caregiver. please, if there's anyone out there to give me a virtual hug,

ill take it. cuz im tryin here, but i feel really alone.

>

[Guest guest]

I was where you are a couple of weeks ago. I had/have to remind myself, "I feel lonely, but I am not alone!"

I hope that just putting your feelings into words made you feel a little better. I "grieve" the loss of the son I thought I would have too. I wouldn't trade him for the world, but the constant need of behavior modification doesn't leave me with much room to show my love to him or my other kids.

I'm starting to see a sense of humor in my 7 yo once again (had, then "lost" at 2-6). I try to rationalize to that there is SO much that they are learning (even if neurotypical) and on top of it not being able to explain it to us. If you know his "obbsession" try to engage him for some fun time,. It may not make him laugh, but he can feel like you get him.

Hang in there!

( ) 'the child i lost'

ok- here's a not practical, but very emotional question.

CAN ANYONE RELATE TO THE FOLLOWING FEELING:

my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he w as less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

[Guest guest]

I do understand. My aspie (2nd of 3 boys) was the SWEETEST baby in the world.

He made me feel like I loved all babies, and like I wanted lots of them.

Then came all the problems. He became about 90% of the stress in my life,

outshadowing all the others...moving, new baby, grad school.

I thought I was crazy, until his little brother came along and didn't get out of

bed 3,000 times/night, didn't scream about everything, didn't chew everything

under the son, didn't spend hours reciting math facts.

Then we asked the school to evaluate him. (We homeschool.) After the

evaluations, they showed me all kinds of things that they did with kids like

him: Scheduling, social stories, speech and language therapy (his disability hid

very well behind his " little professor " math vocabulary, when in fact, his

comprehension of pictures and stories was at next to nothing), and told me some

books to start reading.

As a result of all the changes we have made, from the scheduling and the social

stories, and ESPECIALLY the speech and language work we have done over the last

6-8 months, he has become a delightful boy again. He still has his issues, but

he can communicate with us now, and we have conversations, and he is beginning

to understand basic picture books, and he has become sweet and funny again.

While socialization is important, and he does have activities to get some, with

homeschooling him, I have been able to focus all but one or two of his school

activities on speech and language related activities-vocabulary, comprehension,

reading, and so on. I had no idea before hand that Asperger's had such a huge

communication component to it, but I credit this intensive work (along with

other measures, such as contolling access to his obsessions) to getting my boy

back.

We just got into therapy for him, after waiting months on a list, and it turns

out we may not need much after all. He is communicating beautifully for now! I

hope this can encourage you some.

(I just worry about what will happen when he hits puberty!)

>

> ok- here's a not practical, but very emotional question.

> CAN ANYONE RELATE TO THE FOLLOWING FEELING:

>

> my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at

old photos and videos which i havent done in a while. there was a video of my

son when he was just 2, talking animatedly to the camera and even hugging his

doll. I had a meltdown. my husband couldnt understand, he said 'he's different,

all kids grow up, they're allways less cute at 4 then at 2' but he didtn see

what i saw. i saw a kid who's pervasive disorder had not yet fully taken over

and i saw a glimps of a child, my child, that i feel i have lost. in that video

i saw a small boy who could still love and feel, and LAUGH. he was laughing, so

freely. he bearly ever does that now. worse than the feelings themselves, was

the realization I'm alone in feeling them and my husband thinks im crazy. does

anyone understand? is it a mother thing? or have I really gone batty? I know he

was born with what he has, but it takes time for these things to fully mature

and i honestly think when he was younger he was less pluaged and just, lighter,

freer, happier. i love my son - for who he his today- with all my heart. am i

such a bad mother for missing the little boy who would giggle and smile? the

boy that once in a while let me feel like a good mother? lately i feel less than

a mother and more like a caregiver. please, if there's anyone out there to give

me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

>

[Guest guest]

I completely understand and have had the same feelings in my

life. Just a glimpse of who he was is very different than who he has grown to

be.

Namaste

Dawn in Tucson

From:

[mailto: ] On Behalf Of rebecca1749@...

Sent: Thursday, February 11, 2010 9:03 PM

Subject: ( ) 'the child i lost'

ok- here's a not practical, but very emotional

question.

CAN ANYONE RELATE TO THE FOLLOWING FEELING:

my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at

old photos and videos which i havent done in a while. there was a video of my

son when he was just 2, talking animatedly to the camera and even hugging his

doll. I had a meltdown. my husband couldnt understand, he said 'he's different,

all kids grow up, they're allways less cute at 4 then at 2' but he didtn see

what i saw. i saw a kid who's pervasive disorder had not yet fully taken over

and i saw a glimps of a child, my child, that i feel i have lost. in that video

i saw a small boy who could still love and feel, and LAUGH. he was laughing, so

freely. he bearly ever does that now. worse than the feelings themselves, was

the realization I'm alone in feeling them and my husband thinks im crazy. does

anyone understand? is it a mother thing? or have I really gone batty? I know he

was born with what he has, but it takes time for these things to fully mature

and i honestly think when he was younger he was less pluaged and just, lighter,

freer, happier. i love my son - for who he his today- with all my heart. am i

such a bad mother for missing the little boy who would giggle and smile? the

boy that once in a while let me feel like a good mother? lately i feel less

than a mother and more like a caregiver. please, if there's anyone out there to

give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

[Guest guest]

My boys with autism never were different early on. I mean, they were not "NT" children from the start. They always had autism and always had quirks. So I never felt I had lost anything along the way.

It is curious that there are people who say that they had "normal" kids up to a certain age/stage. I would think it applies more to AS kids because they do develop fairly normally overall but there are those who insist a vaccine caused autism and that their kids were perfectly "normal" up to age 2 or something. But I also wonder if there were issues that were just not noticed early on or that the problems were not such that they begged attention until later on. I guess what I am saying is that you did not lose your child. He was probably always on a specific trajectory in development.

One thing that might help is to realize that you never had a typical developing child that was "taken" from you. Maybe within your mind, it seems that way. But this is a developmental disability and there were likely issues going on that were not apparent early on. So you did not lose a child that was later replaced by one with problems. It is the same child. You are probably sad to note the progression of the disability, not the replacement of a "normal" child for one with problems.

I guess for me, having children with autism instead of AS has "let" me escape any idea we had "typical" children from the start. lol. No illusions there. However you work it out for yourself, it is helpful not to spend too much time mourning what "might" have been but rather focusing on what you can do to make things better from here on out. Well, I suppose that is how I best handle it for myself. Others may feel spending time on "why?" helps. I don't. I could not function if I spent time pondering why or how in the sense that I "lost" something because I would get really depressed. Maybe it's a matter of acceptance. But when I look at old video's or pictures of my boys, I am most struck by how autism is in our faces. You know, I have tons of photo's of my older ds spinning things or stacking things (video tapes were his favorite) or making the letter "T" on everything vs. cute pictures of him playing with actual toys, which he almost never did. By age 2, he was better at Nintendo than I was. lol. We have video's of our dd and you can hear this awful screaming in the background, which he did so often back then. We never had a typical homelife. So we knew early on that things were not going along normally. That might help my ability to not mourn for what we didn't have anyway. ??

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) 'the child i lost'

ok- here's a not practical, but very emotional question.

CAN ANYONE RELATE TO THE FOLLOWING FEELING:

my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he w

as less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

[Guest guest]

Good points, Roxanna. I think for me, developmentally, he was off the charts in the "exceptional" ranges for lifting his head up and turning it side to side, sitting up, cruising furniture, crawling, walking, etc... for the first year of his life so I was anticipating this would continue on year after year, but it didn't. Now I see maybe his ability to hyperfocus and persevere might've attributed to him hitting all of those physical milestones so early, but at the time, I thought I had a kid who was going to excel at so many things. Something either changed though, along the way, or as he got older, it was easier to see some of the other problems. In hindsight, there were some problems. He had horrible reflux his whole first year, really bad. And he would feel so tense when I held him most of the time. He always wanted to get down. He wasn't a baby/kid who

wanted to ever snuggle with me. Now I realize that might've had more to do with sensory issues. I don't think vaccines had anything to do with it. I just know, for the first year, right or wrong, I thought things were going wonderfully and I thought I knew what the future was going to hold for us. Boy, was i wrong.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: Roxanna <MadIdeas@...> Sent: Sat, February 13, 2010 8:18:24 AMSubject: Re: ( ) 'the child i lost'

My boys with autism never were different early on. I mean, they were not "NT" children from the start. They always had autism and always had quirks. So I never felt I had lost anything along the way. It is curious that there are people who say that they had "normal" kids up to a certain age/stage. I would think it applies more to AS kids because they do develop fairly normally overall but there are those who insist a vaccine caused autism and that their kids were perfectly "normal" up to age 2 or something. But I also wonder if there were issues that were just not noticed early on or that the problems were not such that they begged attention until later on. I guess what I am saying is that you did not lose your child. He was probably always on a specific trajectory in development. One thing that might help is to realize that you

never had a typical developing child that was "taken" from you. Maybe within your mind, it seems that way. But this is a developmental disability and there were likely issues going on that were not apparent early on. So you did not lose a child that was later replaced by one with problems. It is the same child. You are probably sad to note the progression of the disability, not the replacement of a "normal" child for one with problems.I guess for me, having children with autism instead of AS has "let" me escape any idea we had "typical" children from the start. lol. No illusions there. However you work it out for yourself, it is helpful not to spend too much time mourning what "might" have been but rather focusing on what you can do to make things better from here on out. Well, I suppose that is how I best handle it for myself. Others may feel spending time on "why?" helps. I

don't. I could not function if I spent time pondering why or how in the sense that I "lost" something because I would get really depressed. Maybe it's a matter of acceptance. But when I look at old video's or pictures of my boys, I am most struck by how autism is in our faces. You know, I have tons of photo's of my older ds spinning things or stacking things (video tapes were his favorite) or making the letter "T" on everything vs. cute pictures of him playing with actual toys, which he almost never did. By age 2, he was better at Nintendo than I was. lol. We have video's of our dd and you can hear this awful screaming in the background, which he did so often back then. We never had a typical homelife. So we knew early on that things were not going along normally. That might help my ability to not mourn for what we didn't have anyway. ??

Roxanna"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) 'the child i lost'

ok- here's a not practical, but very emotional question. CAN ANYONE RELATE TO THE FOLLOWING FEELING:my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone

batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he w as less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

[Guest guest]

Hi ,

I think you are going through the greiving process which is perfectly

understandable. I had much stronger painful emotions when I went through this

with my daughter first. Then recently with my son, who is less affected, I have

just felt like " are you kidding me? " " two disabled children? " and the feelings

and tears just haven't come (yet). Yes, it is a loss and we all go through it in

our own way in our own time. My husband spent a lot more time in denial than I

did since he was at work and didn't deal with it as much then as I did. Your

husband is probably just in a different stage than you are right now- try to

give him time...

Patty mom to Sheridon 7 RTS and Blaise 6 AS

[Guest guest]

Did I type these other three posts?? WOW! They sound JUST LIKE OUR HOME AND LIFE! I felt EXACTLY like 's comments with my 16 year old: I thought for sure he would be Albert Einstein and need a better mother by age 3 because at 2, he was exceeding what felt like my college education and limits of intellect (I thought I was fairly intelligent but he put THAT in to question OR realistic perspectives!). By 4, I wondered where 'he went,' because I watched him 'dumb down' (I hate that term but feel it is best at describing it---at 2, he could write and spell his name, knew all his colors; at four, we were starting over, like he had a stroke or something----relearning all the basics-----it was WEIRD!). Medically, nothing was 'found' to back it up but it was bizarre. He's 16 NOW, and he is normal to 30 something and is about like an adult 'friend' to my husband and me; NEXT SECOND, he may be 2, and we wondering how we can keep on doing it. It is AMAZING and sad all the same time. We have done it all (just about), tried it all, thought about it all (did he eat or drink something that made it different? NO---could do the same thing tomorrow and be the '30 year old buddy' all day-----ALL THOUGHTS and ideas have crossed our minds! We just want the best for our kids: I STILL CRY WITH EACH OF THEM, as sometimes, we forget they are NORMAL at times (when they have NORMAL times, that is when I cry---my 8 year old expressed knowing he is being left out by kids the other day----I CRIED, and that made him cry----he's NEVER CARED, or that is what we thought---------so, the fact he NOTICED and CARED is why I cried---my husband even had a tear in his eye, as this came out during waiver services family therapy------WOW----).

So, while we all live in different houses, different kids, with different lives, this group brings me back to reality of how much alike and similar we all are! Asperger's Syndrome: Sure gives us an adventure.

Ruthie Dolezal

Mom of four sons 16 down to 8 months

From: smacalli@...Date: Sat, 13 Feb 2010 07:40:57 -0800Subject: Re: ( ) 'the child i lost'

Good points, Roxanna. I think for me, developmentally, he was off the charts in the "exceptional" ranges for lifting his head up and turning it side to side, sitting up, cruising furniture, crawling, walking, etc... for the first year of his life so I was anticipating this would continue on year after year, but it didn't. Now I see maybe his ability to hyperfocus and persevere might've attributed to him hitting all of those physical milestones so early, but at the time, I thought I had a kid who was going to excel at so many things. Something either changed though, along the way, or as he got older, it was easier to see some of the other problems. In hindsight, there were some problems. He had horrible reflux his whole first year, really bad. And he would feel so tense when I held him most of the time. He always wanted to get down. He wasn't a baby/kid who wanted to ever snuggle with me. Now I realize that might've had more to do with sensory issues. I don't think vaccines had anything to do with it. I just know, for the first year, right or wrong, I thought things were going wonderfully and I thought I knew what the future was going to hold for us. Boy, was i wrong.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: Roxanna <MadIdeasaol> Sent: Sat, February 13, 2010 8:18:24 AMSubject: Re: ( ) 'the child i lost'

My boys with autism never were different early on. I mean, they were not "NT" children from the start. They always had autism and always had quirks. So I never felt I had lost anything along the way. It is curious that there are people who say that they had "normal" kids up to a certain age/stage. I would think it applies more to AS kids because they do develop fairly normally overall but there are those who insist a vaccine caused autism and that their kids were perfectly "normal" up to age 2 or something. But I also wonder if there were issues that were just not noticed early on or that the problems were not such that they begged attention until later on. I guess what I am saying is that you did not lose your child. He was probably always on a specific trajectory in development. One thing that might help is to realize that you never had a typical developing child that was "taken" from you. Maybe within your mind, it seems that way. But this is a developmental disability and there were likely issues going on that were not apparent early on. So you did not lose a child that was later replaced by one with problems. It is the same child. You are probably sad to note the progression of the disability, not the replacement of a "normal" child for one with problems.I guess for me, having children with autism instead of AS has "let" me escape any idea we had "typical" children from the start. lol. No illusions there. However you work it out for yourself, it is helpful not to spend too much time mourning what "might" have been but rather focusing on what you can do to make things better from here on out. Well, I suppose that is how I best handle it for myself. Others may feel spending time on "why?" helps. I don't. I could not function if I spent time pondering why or how in the sense that I "lost" something because I would get really depressed. Maybe it's a matter of acceptance. But when I look at old video's or pictures of my boys, I am most struck by how autism is in our faces. You know, I have tons of photo's of my older ds spinning things or stacking things (video tapes were his favorite) or making the letter "T" on everything vs. cute pictures of him playing with actual toys, which he almost never did. By age 2, he was better at Nintendo than I was. lol. We have video's of our dd and you can hear this awful screaming in the background, which he did so often back then. We never had a typical homelife. So we knew early on that things were not going along normally. That might help my ability to not mourn for what we didn't have anyway. ??

Roxanna"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) 'the child i lost'

ok- here's a not practical, but very emotional question. CAN ANYONE RELATE TO THE FOLLOWING FEELING:my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he w as less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

[Guest guest]

Dont feel alone rebecca.

I AM a father (and husband) and feel the same as you.

when our daughter (her name is rebekah too. just spelled differently)was 2 we

just thought she marched to the beat of her own drum.

we didnt take little subtle things like ,when we tried to put her down outside

with no shoes on she would lift her feet and not allow us to put her down (the

sensation of the grass on her feet).

She would walk with her head own and walk into walls. She would hide when there

was more than 4 people in a room, and she would head-but my wife so hard when

she was holding her that it would almost knock my wife out, and not affect my

daughter at all.

we just told people she was shy. thats what we thought.

Listen, i dont know how other people on the thread feel about this, but it has

helped me cope.

it is not that your child has gotten worse, or laughs less, or is less

emotional.

The thing is, as the child starts to get older, we (society) expects them to

start to fit in to our mold.

The fact is, he does find humor, he does feel, he does love.

Just in his own way.

the more we try to make them do it our way, the more confusing it becomes and

stifles their ability to do so.

I believe, if we let them do things their way, you may start to notice more and

more that what you think is not there, is actually there in abundance, just on a

different level.

I just wrote this on a thread i started (waiting to be approved), that " all of

our lives we are forced and taught to think in BLACK and WHITE, But my little

Girl can think in Rainbows. "

Youre not alone

.

>

> ok- here's a not practical, but very emotional question.

> CAN ANYONE RELATE TO THE FOLLOWING FEELING:

>

> my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at

old photos and videos which i havent done in a while. there was a video of my

son when he was just 2, talking animatedly to the camera and even hugging his

doll. I had a meltdown. my husband couldnt understand, he said 'he's different,

all kids grow up, they're allways less cute at 4 then at 2' but he didtn see

what i saw. i saw a kid who's pervasive disorder had not yet fully taken over

and i saw a glimps of a child, my child, that i feel i have lost. in that video

i saw a small boy who could still love and feel, and LAUGH. he was laughing, so

freely. he bearly ever does that now. worse than the feelings themselves, was

the realization I'm alone in feeling them and my husband thinks im crazy. does

anyone understand? is it a mother thing? or have I really gone batty? I know he

was born with what he has, but it takes time for these things to fully mature

and i honestly think when he was younger he was less pluaged and just, lighter,

freer, happier. i love my son - for who he his today- with all my heart. am i

such a bad mother for missing the little boy who would giggle and smile? the

boy that once in a while let me feel like a good mother? lately i feel less than

a mother and more like a caregiver. please, if there's anyone out there to give

me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

>

[Guest guest]

I just want to thank you all so much for your comments and support. I think many

of you made some excellent points and I'm going to take them to heart. I have a

large loving family and many friends, but somehow they cannot replace the

support of people that truly relate to what I am going through.

SO thank you all! and may we all be strong!

-

>

> ok- here's a not practical, but very emotional question.

> CAN ANYONE RELATE TO THE FOLLOWING FEELING:

>

> my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at

old photos and videos which i havent done in a while. there was a video of my

son when he was just 2, talking animatedly to the camera and even hugging his

doll. I had a meltdown. my husband couldnt understand, he said 'he's different,

all kids grow up, they're allways less cute at 4 then at 2' but he didtn see

what i saw. i saw a kid who's pervasive disorder had not yet fully taken over

and i saw a glimps of a child, my child, that i feel i have lost. in that video

i saw a small boy who could still love and feel, and LAUGH. he was laughing, so

freely. he bearly ever does that now. worse than the feelings themselves, was

the realization I'm alone in feeling them and my husband thinks im crazy. does

anyone understand? is it a mother thing? or have I really gone batty? I know he

was born with what he has, but it takes time for these things to fully mature

and i honestly think when he was younger he was less pluaged and just, lighter,

freer, happier. i love my son - for who he his today- with all my heart. am i

such a bad mother for missing the little boy who would giggle and smile? the

boy that once in a while let me feel like a good mother? lately i feel less than

a mother and more like a caregiver. please, if there's anyone out there to give

me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

>

[Guest guest]

thank you , that was very touching. I want so much to believe, as you do,

that it is all there- buried inside him. though it is somewhat troubling to

think that we are perhaps 'squelching' him with all the therapy - trying to

squeeze him into a life we all perceive to be 'normal' when maybe he would be

'happier' just thriving the way he is... but i guess I'll follow you on your new

thread and discuss it there.

thanks again

rebecca

> >

> > ok- here's a not practical, but very emotional question.

> > CAN ANYONE RELATE TO THE FOLLOWING FEELING:

> >

> > my son is 4, diagnosed with aspergers 15 months ago. recently i was looking

at old photos and videos which i havent done in a while. there was a video of my

son when he was just 2, talking animatedly to the camera and even hugging his

doll. I had a meltdown. my husband couldnt understand, he said 'he's different,

all kids grow up, they're allways less cute at 4 then at 2' but he didtn see

what i saw. i saw a kid who's pervasive disorder had not yet fully taken over

and i saw a glimps of a child, my child, that i feel i have lost. in that video

i saw a small boy who could still love and feel, and LAUGH. he was laughing, so

freely. he bearly ever does that now. worse than the feelings themselves, was

the realization I'm alone in feeling them and my husband thinks im crazy. does

anyone understand? is it a mother thing? or have I really gone batty? I know he

was born with what he has, but it takes time for these things to fully mature

and i honestly think when he was younger he was less pluaged and just, lighter,

freer, happier. i love my son - for who he his today- with all my heart. am i

such a bad mother for missing the little boy who would giggle and smile? the

boy that once in a while let me feel like a good mother? lately i feel less than

a mother and more like a caregiver. please, if there's anyone out there to give

me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

> >

>

[Guest guest]

Hi Patty, thanks for your post. can you give me some tips on coping with the

husband who's a step (or maybe ten steps) behind? my husband and I are so close

about everything but with this i just feel like there's always this ocean

between us. he thinks i assume the worst and 'who says the diagnosis is even

correct' when i see it so blatantly and i just (as mean as this may sound) want

him to feel sad and grieve with me! why is he so ok with this????

>

> Hi ,

>

> I think you are going through the greiving process which is perfectly

understandable. I had much stronger painful emotions when I went through this

with my daughter first. Then recently with my son, who is less affected, I have

just felt like " are you kidding me? " " two disabled children? " and the feelings

and tears just haven't come (yet). Yes, it is a loss and we all go through it in

our own way in our own time. My husband spent a lot more time in denial than I

did since he was at work and didn't deal with it as much then as I did. Your

husband is probably just in a different stage than you are right now- try to

give him time...

>

> Patty mom to Sheridon 7 RTS and Blaise 6 AS

>

[Guest guest]

hi,

you wrote 'the constant need of behavior modification doesn't leave me with much

room to show my love to him' -- you managed to put into words something i have

been trying to put my finger on for months!! i find this precise point SO

frustrating! i can't just 'go easy on him' like my mother does with him, or

friends etc, because if i don't help him fix his behavior no one will! but I'm

always the bad guy! i sometimes have to stop myself and say 'hey, your his

mother, not a drill sargent' of course, then i want to hug him, which he doesn't

want either. your idea of engaging him in his obsessions is true- he is happiest

when im testing him in multiplication (he's 4) but still, i just feel SO not

motherly with him. any other tips? its nice to see you feel like you've come out

on the other side of this stage... but i don't know if i can hang on till he's

six!

thanks for your help,

>

>

> I was where you are a couple of weeks ago. I had/have to remind myself, " I

feel lonely, but I am not alone! "

>

> I hope that just putting your feelings into words made you feel a little

better. I " grieve " the loss of the son I thought I would have too. I wouldn't

trade him for the world, but the constant need of behavior modification doesn't

leave me with much room to show my love to him or my other kids.

>

> I'm starting to see a sense of humor in my 7 yo once again (had, then " lost "

at 2-6). I try to rationalize to that there is SO much that they are learning

(even if neurotypical) and on top of it not being able to explain it to us. If

you know his " obbsession " try to engage him for some fun time,. It may not make

him laugh, but he can feel like you get him.

>

> Hang in there!

>

>

>

>

>

>

> ( ) 'the child i lost'

>

>

>

>

> ok- here's a not practical, but very emotional question.

> CAN ANYONE RELATE TO THE FOLLOWING FEELING:

>

> my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at

old photos and videos which i havent done in a while. there was a video of my

son when he was just 2, talking animatedly to the camera and even hugging his

doll. I had a meltdown. my husband couldnt understand, he said 'he's different,

all kids grow up, they're allways less cute at 4 then at 2' but he didtn see

what i saw. i saw a kid who's pervasive disorder had not yet fully taken over

and i saw a glimps of a child, my child, that i feel i have lost. in that video

i saw a small boy who could still love and feel, and LAUGH. he was laughing, so

freely. he bearly ever does that now. worse than the feelings themselves, was

the realization I'm alone in feeling them and my husband thinks im crazy. does

anyone understand? is it a mother thing? or have I really gone batty? I know he

was born with what he has, but it takes time for these things to fully mature

and i honestly think when he was younger he w as less pluaged and just, lighter,

freer, happier. i love my son - for who he his today- with all my heart. am i

such a bad mother for missing the little boy who would giggle and smile? the boy

that once in a while let me feel like a good mother? lately i feel less than a

mother and more like a caregiver. please, if there's anyone out there to give me

a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

>

[Guest guest]

, I know I responded before, my daughter is now 21. Hindsight

I see all the markers. But I am like some others that I expected big

things for her as she was in " gifted " classes in elementary school!

She is plugging away at college with a lower class load, and lower

GPA than would be expected for her SAT's. I am getting off track

here.

I read a blog on www.thedailybeast.com/blogs-and-stories/2009-05-11/

a-radical-new-autism-theory/p/. So sorry for the long address,

but I think it is worthwhile to read. It reinforced my longheld

intuition that my daughter FELT waaay more empathy and love and

feelings than is commonly thought. They (autistic interviewees)

felt like it was just too strong coming in, and withdrew. Or

like sometimes, my daughter would get SO upset when a child in

the class got a scolding, and I had to remind her it was the other

child, not her! " But it feels like it's me! "

She thanked me last year for always trying to put her into

social situations (I would call and make play dates way past the

age of doing this was necessary!) and for not giving up on giving

the love to her in gentle loving ways, like not avoiding a hug

but trying to be in tune to her. She still can misunderstand

in conversations as she has a hard time thinking I do not read

her mind! Believe me, I wasn't miss perfect mother either.

I just loved her so much.

Your son loves you. My daughter texts me I love you even after

I think we've had a snit. He'd show it better if he could right

now, but I believe he loves you so much, and feels happy inside

too; sometimes we cannot see it. That is what I grieved.

Hugs to you, keep on keeping on, and focus on one day at a time,

while working on getting the best help you can for him, and occassionaly do

something GOOD for YOU.

Jo

[Guest guest]

To try and find a balance, praise him when he does anything right or attempts to do something right. We flipped that switch around the age of 9 and it worked wonders for us. I would "catch him" doing good, wherever possible. It might be as simple as "I like the inside voice you are using right now. Thank you so much!" or "You are sitting so nicely in your chair. Good job!" Our therapist at the time said you should go to bed at night on a sugar high for all of the nice things that came out of your mouth that day =) It really helped my son b/c he's an adult pleaser so to get the complements meant the world to him. It was hard at first, but grew easier as time went on. And, as his mom, I much more enjoyed praising the good things instead of always harping on the bad things. I still had to intervene and discipline him sometimes, but it became less frequent.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: "rebecca1749@..." <rebecca1749@...> Sent: Sun, February 14, 2010 8:22:42 PMSubject: ( ) Re: 'the child i lost'

hi,you wrote 'the constant need of behavior modification doesn't leave me with much room to show my love to him' -- you managed to put into words something i have been trying to put my finger on for months!! i find this precise point SO frustrating! i can't just 'go easy on him' like my mother does with him, or friends etc, because if i don't help him fix his behavior no one will! but I'm always the bad guy! i sometimes have to stop myself and say 'hey, your his mother, not a drill sargent' of course, then i want to hug him, which he doesn't want either. your idea of engaging him in his obsessions is true- he is happiest when im testing him in multiplication (he's 4) but still, i just feel SO not motherly with him. any other tips? its nice to see you feel like you've come out on the other side of this stage... but i don't know if i can hang on till he's six! thanks for your help,>> > I was where you are a couple of weeks ago. I had/have to remind myself, "I feel lonely, but I am not alone!" > > I hope that just putting your feelings into words made you feel a little better. I "grieve" the loss of the son I thought I would have too. I wouldn't trade him for the world, but the constant need of behavior modification doesn't leave me with much room to show my love to him or my other kids.> > I'm starting to see a sense of humor in my 7 yo once again (had, then "lost" at 2-6). I try to rationalize to that there is SO much that they are learning (even if neurotypical) and on top of it not being able to explain it to us. If you know his "obbsession" try to engage him for some fun time,. It may not

make him laugh, but he can feel like you get him.> > Hang in there!> > > > > > > ( ) 'the child i lost'> > > > > ok- here's a not practical, but very emotional question. > CAN ANYONE RELATE TO THE FOLLOWING FEELING:> > my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand,

he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he w as less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less

than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.>

[Guest guest]

The only other real nugget of info I can think of right now is that you've have made it this far, so you can get through the next day (hour, tantrum, multiplication table). My guy at four was obsessed with the Sesame Street songs sung by the characters The Count and the Grouch, so my "milestone" was one more song.

Just to warn you, I do go in and out of my "acceptance". Each milestone he meets or should have met could set me off. Even just talking with someone about their neurotypical child can trigger feelings. I do know that it takes a big heart to raise these children and and a special heart to care for them.

You're doing a great job! Big hugs,

Angelique

( ) 'the child i lost'

>

>

>

>

> ok- here's a not practical, but very emotional question.

> CAN ANYONE RELATE TO THE FOLLOWING FEELING:

>

> my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he w as less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

>

[Guest guest]

I remember feeling like this for a while, really alone and no one seemed to have any answers except whatever I was doing I was doing it wrong and was the cause of my sons behaviour. I used to pick him up from nursery and ask him questions, like did you have fun, what were you doing, he never answered. And I could see all the other kids over excitedly chatting away to their Mums. It was hard and very frustrating. Once I had tried everything I could think of to get him to snap out of it and be like a normal kid I sat on my bed and cried for a while and desided that I wasn't doing either of us any good, trying to get him to be something he couldn't be. I desided just to accept that he is different, not wrong or broken just different. Since then I have tried to work with the skills he does have and try and explain the things that are a bit of a mistery for

him. He is 6 now and for the most part is a very happy, funny and loving boy, I wouldn't change him for the world, I just wish I could change the rest of the world so more people could accept people as they are.

From: ajloeffler@... <ajloeffler@...>Subject: Re: ( ) Re: 'the child i lost' Date: Tuesday, 16 February, 2010, 13:14

The only other real nugget of info I can think of right now is that you've have made it this far, so you can get through the next day (hour, tantrum, multiplication table). My guy at four was obsessed with the Sesame Street songs sung by the characters The Count and the Grouch, so my "milestone" was one more song.

Just to warn you, I do go in and out of my "acceptance" . Each milestone he meets or should have met could set me off. Even just talking with someone about their neurotypical child can trigger feelings. I do know that it takes a big heart to raise these children and and a special heart to care for them.

You're doing a great job! Big hugs,

Angelique

( ) 'the child i lost'> > > > > ok- here's a not practical, but very emotional question. > CAN ANYONE RELATE TO THE FOLLOWING FEELING:> > my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and

even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he w as less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy

that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.>

[Guest guest]

I wrote a little "letter to my son" in my oldest ds's baby book at his first year birthday. I did mention a lot of the quirks he was having that we had noticed. But I also made a lot of excuses for them. So I realized things were off but not the extent and then I also tried making the negatives into positives, so to speak. And then also, the negatives were not anything we couldn't adapt to at the time. He had to have all his food cold, for instance. So there we were, putting his food in the freezer first - not a big deal. lol. He refused to go in certain stores and if I took him, he would scream bloody murder until we left. Ok. So I just drove out of the way to other stores where he did not scream. No big deal. I mean, eventually, you realize that the "no big deal's" were piling up. But shortly after he turned 1 year old, the really heavy duty stuff kicked into gear - headbanging, screaming constantly, obsessive flipping of light switches and spinning things, not sleeping, etc.

I wonder about the great motor control too. Sometimes people mention that and I noticed it with both my ds's who later went on to have poor fine motor and large motor skills.

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) 'the child i lost'

ok- here's a not practical, but very emotional question.

CAN ANYONE RELATE TO THE FOLLOWING FEELING:

my son is 4, diagnosed with aspergers 15 months ago. recently i was looking at old photos and videos which i havent done in a while. there was a video of my son when he was just 2, talking animatedly to the camera and even hugging his doll. I had a meltdown. my husband couldnt understand, he said 'he's different, all kids grow up, they're allways less cute at 4 then at 2' but he didtn see what i saw. i saw a kid who's pervasive disorder had not yet fully taken over and i saw a glimps of a child, my child, that i feel i have lost. in that video i saw a small boy who could still love and feel, and LAUGH. he was laughing, so freely. he bearly ever does that now. worse than the feelings themselves, was the realization I'm alone in feeling them and my husband thinks im crazy. does anyone understand? is it a mother thing? or have I really gone

batty? I know he was born with what he has, but it takes time for these things to fully mature and i honestly think when he was younger he w as less pluaged and just, lighter, freer, happier. i love my son - for who he his today- with all my heart. am i such a bad mother for missing the little boy who would giggle and smile? the boy that once in a while let me feel like a good mother? lately i feel less than a mother and more like a caregiver. please, if there's anyone out there to give me a virtual hug, ill take it. cuz im tryin here, but i feel really alone.

[Guest guest]

He's probably not "ok" with it - he is just happily living in denial. Denial is a nice place. Sometimes I go there. lol.

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) Re: 'the child i lost'

Hi Patty, thanks for your post. can you give me some tips on coping with the husband who's a step (or maybe ten steps) behind? my husband and I are so close about everything but with this i just feel like there's always this ocean between us. he thinks i assume the worst and 'who says the diagnosis is even correct' when i see it so blatantly and i just (as mean as this may sound) want him to feel sad and grieve with me! why is he so ok with this????

>

> Hi ,

>

> I think you are going through the greiving process which is perfectly understandable. I had much stronger painful emotions when I went through this with my daughter first. Then recently with my son, who is less affected, I have just felt like "are you kidding me?" "two disabled children?" and the feelings and tears just haven't come (yet). Yes, it is a loss and we all go through it in our own way in our own time. My husband spent a lot more time in denial than I did since he was at work and didn't deal with it as much then as I did. Your husband is probably just in a different stage than you are right now- try to give him time...

>

> Patty mom to Sheridon 7 RTS and Blaise 6 AS

>