The first time you write it all out. - Mothering Forums

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#1 of 14 Old 03-26-2006, 02:56 AM - Thread Starter
 
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The "My son is deaf" thread title jarred me. I can hardly write the phrase yet "My son has ASD" because it is so hard to see that written. Instead I write things like "I think he may have ASD". I know he does. I know it in that place deep down that I can't lie to, but it takes such strength to actually write the words.

I wondered if that was a common experience. Does it get easier? I can only assume it does, but I am so far away from that yet. All my posts on my blog about the struggle with ASD are still protected because I am just...I don't know...strong enough yet?

I think it is made worse when you 'defended' you child for a long time. When you don't want to see that your child is facing something that hard. It is as if not admitting it will make it not true.

Anybody relate?

Mom to 10yo Autistic Wonder Boy and 6yo Inquisitive Fireball Girl . December birthdays.

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#2 of 14 Old 03-26-2006, 04:14 AM
 
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i havent written the words asd or autism yet as in saying ryan has these things... we are pretty certian he does but we have not been given the official diagnosis just yet... But i have so many books on autism ads and adhd...
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#3 of 14 Old 03-26-2006, 07:14 PM
 
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Quote:
Originally Posted by Jennifer Z
I think it is made worse when you 'defended' you child for a long time. When you don't want to see that your child is facing something that hard. It is as if not admitting it will make it not true.

Anybody relate?
I had sort of the opposite experience - I was so tired of people (friends, grandparents, pediatrician!!) telling me nothing was wrong and I just needed to relax - when I KNEW something wasn't right. After we got the dx, the doctors were looking at us like I would burst into tears or something, but I actually felt a little relieved to know I wasn't crazy.

Then the reality hit!

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#4 of 14 Old 03-26-2006, 07:29 PM
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Jennifer, I can definitely relate. We had some specialists tell us that it was probably not ASD, while others said it definitely was. So we really didn't know what to tell people until we had the full ADOS diagnostic program done for DS. DH and I both intuitively felt that DS was somewhere on the spectrum, but didn't know where. For a year or two I was calling his issues Aspergers/HFA or "borderline autistic," but now I can say autism without any qualifiers. I jumped into the deep end and didn't drown. Care to join me for a swim?

"Isn't life a series of images that change as they repeat themselves?" - Andy Warhol
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#5 of 14 Old 03-26-2006, 09:07 PM
 
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I did the same thing. It's almost like until you write it or say it for the first time, there's a possiblity that it's not real. Like writing or speaking it makes it true.

I think it's completely normal. We deal with as much as we can at a time. It's liberating and terrifying at the same time to make the statement of 'my son has autism'. I think I had a problem with it b/c I didn't know exactly what it was, what it meant, how we would deal/function. As I got more of a grip on that stuff and could explain to others that autism isn't a death sentence, it was easier for me to say it.

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#6 of 14 Old 03-27-2006, 01:21 AM
 
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It took me 2.5 years to admit my son has hearing is hard of hearing (deaf )
But believe me, it was very very hard for me to write my first post

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#7 of 14 Old 03-27-2006, 06:33 AM
 
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I can relate. We're waiting for the evaluation and official dx but after exhaustive research I know in my core that my son has Aspergers Syndrome. I just can't bring myself to say it flat out "My son has AS." without that official stamped diagnosis in my hand. I don't know why. The piece of paper isn't going to change anything.
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#8 of 14 Old 03-27-2006, 12:40 PM
 
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It hit me all at once. The night before we were going to get the results of the evaluation. I started shaking and crying because I knew what was coming.
I did fine in the office but the next day, It REALLY hit.
When I posted about the diagnosis, I was crying.
As I post this, I'm crying.
It makes me so sad that my son has to go through this. I feel so bad watching him struggle with everyday things.
And, yes, I feel bad for me that my one and only child (my miracle boy) is not 'perfect'.

Sad thing is, I can't help being angry and blaming (on the inside) ds's father. (we are not a couple now). His father suspected that he, himself, has Aspergers but he never got evaluated on his own. His niece has Aspergers too. (btw, I wasn't supposed to be ABLE to conceive so I never thought about having a child with ds's father).

I even blame myself. For having amalgram fillings. For having rhogam while pregnant (which probably contained mercury).

I haven't admitted to these feelings...until now. And you know what, it IS really hard to see them in print.

I just keep trying to keep things in perspective. I have a friend who recently lost her ds. He was less than a month younger than my son. Her son died slowly. She can no longer hold her sweet boy in her arms.
THAT was a huge wake up call to me. No, it doesn't take my pain away...but it reminds me to grateful that my son is still with me and that I can love him, hold him, cuddle with him.

Ack, I'm bawling now. It's hard, mama's, but when we support each other like this, it makes it all a little easier.

Many Blessings,
Liz
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#9 of 14 Old 03-27-2006, 02:23 PM
 
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I know exactly what you mean. It is hard to say. Even before it was "official" I knew he had autism, but the first time actually saying it, reading the evals right there in black and white... hit me like a ton of bricks.

There is a grieving process... I still get mad, and I feel selfish. I want to have another baby b/c I feel cheated that I didn't get to experience having an older child really be the "big brother." Ds #1 really didn't want to have anything to do w/ #2 when he was born... he was down right mean at times to him as a baby. He never wanted to help, he just didn't care at all. I missed so many milestones, never got the deep questions ("Who is God? Why is the sky blue?" etc)... it's hard.

Ok, now I'm going to start crying.

You are not alone
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#10 of 14 Old 03-27-2006, 09:59 PM
 
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It was sort of a relief for me, I saw it coming. I felt for a long time ds had autism. I almost threw up and passed out when the doctor said "your son is autistic," and then launched into a litany of testing he wanted to do. My head just swirled and I really had to fight to not just get up and run out of the exam room, even though I saw it coming. I had to do a lot of deep breathing and praying I didn't throw up. I must have been about 4 shades of green because the nurses and receptionist kept asking me if I was okay. LOL.
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#11 of 14 Old 03-29-2006, 03:56 PM - Thread Starter
 
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We are waiting for the official dx too, but it is very clear he is on the spectrum someplace at this point. I will probably have other jolting moments yet to come yet then, huh. Right now, the developmental ped appointment isn't until next January because she is so booked. The people at the place we are going to do most of his therapies said they might be able to get something sooner than that for me though, but he needs some OT and PT before they can even do some of the tests and observe him as he gets a bit more comfortable. (to help determine how much of it is introversion vs. autistic characteristics...especially with the eye contact and talking). At the least he is PDD-NOS with a language processing disorder (semantic pragmatic disorder) at most, of course, is the more classic 'autism'. A few weeks ago I would have said he doesn't have classic autism, but now I am not so sure. Arg, this is so frustrating, isn't it.

Mom to 10yo Autistic Wonder Boy and 6yo Inquisitive Fireball Girl . December birthdays.

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#12 of 14 Old 03-29-2006, 10:46 PM
 
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Amen!! I could say "My son has SID" but I couldn't say "MY son is a special needs child". Don't ask me why...

Like most of you, I knew something was wrong before the actual diagnosis. It was a relief to be able to start working on it and I never minded explaining his situation to people but saying 'specil needs' was so difficult for me...

And the day we got his diagnosis... I cussed some old man out for telling me I forgot to use my blinker That is SO not like me!
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#13 of 14 Old 03-30-2006, 04:38 PM
 
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hey mommies. i'm so glad there is a safe place where we can be honest and recieve support. my 5 1/2 year old has down syndrome. we didn't find out until a couple hours after he was born. right now he seems so normal. just behind a month or two. and we're not around that many babies his exact age so i don't even think about it. still, i know the gap will soon widen. its scary to think about that. how will i handle it?

we was a DS kid at the museum yesterday. he just sounded so retarded (sorry to use that word, i know its not pc, but its a fact) when he said "dad". i asked dh if he was ready for that and he got angry. its a long road ahead but i think god is preparing us for it. hey, we already accomplished breastfeeding, so it just takes a fight!

my church is big on supporting the parents of special needs kids. so i pray for strength, energy, encouragement and peace for all of you.
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#14 of 14 Old 03-30-2006, 05:17 PM
 
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Quote:
Originally Posted by jaye
I had sort of the opposite experience - I was so tired of people (friends, grandparents, pediatrician!!) telling me nothing was wrong and I just needed to relax - when I KNEW something wasn't right. After we got the dx, the doctors were looking at us like I would burst into tears or something, but I actually felt a little relieved to know I wasn't crazy.

Then the reality hit!

That's exactly the same for us too. It may have been harder to see our family members who used to tell us he was fine and nothing's wrong start to realize that yes, something IS wrong.

And I have still never said to anyone else (who doesn't know ds already) that he has autism. Wait, scratch that, our neighbor knows but that's about it. Seeing it in print is hard but I have a harder time saying it. I guess because I just don't want to see the look on people's face when they don't know what to say or that "I feel sorry for you" look at me or ds.

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