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Loulamai
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20 Oct 2013, 10:49 am

Hi I'm new, my 8 year old son has just been diagnosed ASD, which isn't a huge surprise but is still a shock. I guess I don't know how to talk to yet, my husband gets upset to see me cry so we don't end up talking much. I think one of the hardest thing to deal with besides the guilt of him going so long undiagnosed is that I've felt so disconnected from him, I remember feeling horrible because I connect so well with my daughter (2 yrs younger) and it felt like she was the favourite. I guess I'm after reassurance this is all normal?
I've probably felt closer to him in the last 3 days than the last 5 years



mom2tkh
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22 Oct 2013, 8:36 pm

We are in the process of getting my son evaluated through the school system. He is 6 and I have a hard time connecting to him on a daily basis. It is very hard when you have to walk on eggshells so to speak so they don't have a meltdown. I love him with all my heart but I don't always like him.
I know its not advice but I just wanted you to know you aren't alone.



zette
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22 Oct 2013, 11:19 pm

I didn't get a full night's sleep for six weeks after DS was first diagnosed, I was just so worried about everything I kept waking up. In time you will find your footing and will likely feel better once the beginnings of a plan of how to help him start to come together.



timf
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31 Oct 2013, 12:32 pm

My son is now 15. When he was little we would have him sit on a chair until he could get his self-control back. Only once was it so bad that I had to do something more drastic. I filled the tub with water and then picked him up still screaming and placed him in the tub. I think the sensation of water was so surprising that it broke his meltdown, and he could almost "escape" that which held him prisoner.

Now that he is older, we are experimenting with various supplements. Most have no effect and are discarded. He has found some usefulness with Lithium Orate, L-Theanine, and Mucuna pruriens. I leave it up to him to use what he finds useful. He has described the above supplements as being useful in decreasing the intensity of compulsion he has found in his thoughts that contribute to a meltdown.

Before experimenting with these, I would caution that you do research of these substances and always start with a miniscule amount in case there is an adverse reaction.



BuyerBeware
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31 Oct 2013, 3:18 pm

This is totally, utterly, completely normal.

It is not a sin before God, or a failure on your part, that it's "only now" being detected. I don't remember the specifics of your case, but especially if he's on the Asperger's end (double especially if he's on the mild side of the Asperger's end), getting it detected much earlier would have required you to go completely psycho on a lot of people. Finding severe classical autism in young kids is hard enough-- finding mild Asperger's is a BASTARD.

I think my 6-year-old has it-- I actually informally ran the ADOS on him at my therapist's office today; for all I'm even MORE sure that he has it (borderline score, with a very erratic distribution of behaviors-- he checks all the boxes in some categories, none of the boxes in others; this is mild Asperger's in a nutshell), she's still not convinced. The only two people who are, are me and his teacher-- and she wouldn't be if A) I hadn't disclosed myself and B) she didn't have an Asperger's niece that she's close to.

Read that again. It's not your fault, and it's honestly about average timing. It's certainly "in time." Your goal here is not to "fix the autism." That's a bad goal. Your goal is to teach him to deal with the autism and prevent collateral damage-- and you're in just the right window for that. So-- imagine that I'm sitting you down at the table, pouring you a cup of coffee, cutting you a BIG slice of cake, and giving you a hug. You deserve one. Now ditch the guilt-- it's draining energy that needs to go somewhere else.

That disconnect you feel with him?? That's a completely normal NT/AS thing. Natural product of you divergent wiring. Normal, natural, incredibly common. I had it with my oldest daughter-- I have Asperger's, she doesn't. We had to work with it until she was about 10 and started to develop sophisticated enough reasoning skills for us to talk about stuff. It's getting better now. I bridged the gap by doing the best I could to meet her on her terms-- that part will be easier for you, I think-- and by making sure she knew I loved her even if I didn't quite understand.

My son?? Well, put it this way-- the first time it occured to me to suspect he might be ASD was when he was about 2 weeks old. There was nothing I could concretely point to-- no behavior, no symptom, no sign. It occurred to me to wonder because that was when I realized that THIS baby and I had made an instant connection. I won't say I didn't bond with #1-- certainly by the time we left the delivery unit, I loved her and was determined to protect her and do right by her at any cost-- but there was a definite qualitative difference in the connection. Make sense?? Maybe sound familiar???

So don't beat yourself up about it. You can't control it. You CAN control how you let it influence your behavior toward your kid-- and I'm willing to bet that you DO. Reading, a great deal, and listening to him until you learn to see through his eyes will mitigate it a great deal, but I can't tell you that I think it will ever entirely disapper.

My grandmother and I are close. My husband and I are close. My aunt and cousins and I are close. We have learned to see each others' points of view, and the disconnect is much smaller than it used to be. Easily bridged. No longer painful. But still there.


_________________
"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"


Loulamai
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01 Nov 2013, 6:08 am

Thanks for your replies. I'm feeling a lot better about it all now, my grandmother passed away a week after his diagnosis which kind of put the grief of that into perspective. I also spoke to the state's autism organisation about a parents workshop, organised an OT assessment through his school and spoke to a few more parents at school. The support teacher at school also sent home a DVD called 'what are you doing?' That we watched with DS and his sister and he's read different like me (which he loved) and has a couple of other books too. He's happy because he's feeling more understood now