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Step by Step

I have had a relapse, I was an idiot, did too much too soon, and am feeling worse than I did before.

Ugh.

I am over this whole stress induced crappy immune system thing that I have had going on since October of last year.  I am going to look into a vitamin regimen to help boost my immune system, because I don’t have the time to get sick like this. 

I have had so much on my mind the past few weeks and have not been able to get the thoughts out in a complete sentence.  I try to stay away from the what causes autism controversy, but to be honest I wasn’t surprised when The Lancet came out recently and renounced the “study”  done by so-called Dr. Andrew Wakefield that it published 10 years ago.  Even before Diego was diagnosed Jenny Mc Carthy and all of her “well intentioned” advice really aggravated me.  She isn’t a medical doctor and speaks like one quite often.  I am all for pushing the envelope, but cautiously.  That is all I am going to say on that. 

Speaking of what causes autism, I think that I would feel so much better if I had “something” to blame. 

Maybe I would stop blaming myself. 

It has been very hard to get Diego the treatment he needs from private or public services.  I can’t help but think that if I caught on sooner and he was in an early intervention program that places like the regional center and the school district may not be so difficult to deal with or in the regional center’s case not deal with at all.

Woulda…shoulda…coulda….damn it

I sat down with Diego’s play therapist, Kim, today.  She gave me the rundown of the things she is observing and wanted my thoughts. 

She said that Diego hasn’t put up much of a fight about things with her, and I mentioned that she pretty much lets him run the session (which she agreed she was doing to help him get comfortable) so of course he is fine.  I told her that once he has to work on the things that challenge him (scripted play, sharing, compulsions) or doesn’t get to make all the decisions that she will meet opposition.  Same thing happened when we started Pathways (the social skills group).   She chuckled and agreed with my observation.  She did say that she is concerned about a co-morbid OCD diagnosis and I agree :(, but we agreed to continue to observe and re-visit this in the next six months.   She also said that with the behavior he has displayed with her so far, that he is definitely going to need extra support once he starts Kindergarten. 

I have asked her to write a letter stating her findings so that I can take it to the district when we go for Diego’s assessment.  I know that they don’t have to pay attention to it, but I hope that they do. 

Hope

I shouldn’t have to hope that these people do their job, it just doesn’t make any damn  sense to me!

She also reminded me that addressing and modifying all of Diego’s behaviors is going to take time.

I needed to hear this because I apparently think I can fix everything now, when the reality is much different. I tend to be quite fervent in the things that I try to do for Diego. I feel the need to address everything all at once and I forget that some things aren’t going anywhere anytime soon. 

I just want him to be o.k. 

It sounds like such a simple wish, but it is soul wrenching. 

I want this more than anything else in the world. 

*sigh*

I want to speak with God and tell him he can take Asperger’s back.  I will keep Diego (of course), but yeah he can have all of this other shit.  

I’m tired and worried and sad and confused and angry and the list could go on and on.

I read an interview with Temple Grandin and she mentioned something about the expectations or lack thereof that we set for our children with autism.  She was basically saying that many parents don’t give their children on the spectrum enough credit.  This led me to do some reflection on how some of the allowances I give to Diego might actually be holding him back instead of challenging him and allowing him to rise to the occasion.  Let it be said that I don’t let my child walk around biting people and screaming at folks, but I do make allowances for some of his behaviors. 

F*ck I don’t know….

Can I get a manual specifically written to address my child?!?!?

Good news on the sensory processing front, when I stay strictly on the schedule of 15 minutes of any sensory activity every hour on the hour there is major improvement in Diego’s anxiety and anger.  I have the alarm set on my phone to go off every 45 minutes until bedtime so that I stay on top of it.  Diego had a blast looking for the pirate’s gold coins in the rice last night. 

I love his face 🙂

I do want to thank everybody that reads my blog and everyone on my blogroll.  I am blessed to be connected to some amazing people.  Knowing that you get it makes the harder days a bit easier.  Thank you for the support, it means so much.

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About sonidoinquieto

I hate writing bios *bio pending*

8 responses »

  1. There is a lot of conflicting information out there about autism. And I’m surprised at how ugly the discussions can get. Of course, I’m not a doctor or scientist, so I don’t really know about all the things being argued about.

    I saw the Temple Grandin interview too. I think the one area I don’t have enough expectation for Jonathan is in the area of chores. My oldest was setting tables, putting TP away, carrying light groceries, etc. when he was four. Now he takes trash to the dump, mows the lawn, removes snow from the driveway. I tired to get Jonathan to do chores at four. It was always a guessing game as to where our plates and utensils would be on the table (he’s a prankster too). And actually when he does chores he’s pretty good, better than my oldest, but it’s a battle.

    Reply
  2. I am constantly being reminded that this autism parenting thing is a marathon not a sprint race. I have to pace myself.

    Been suffering stress induced ill health myself and it is no fun, you have my greatest sympathy there. My doctor told me to get more sleep, make sure to have a nap in the afternoons when I could and walk for at least an hour a day. I wanted to ask her if she was going to look after my children while I did all this?

    We have a sensory diet for Heidi that our occupational therapist put together and it has made a huge difference. Alternating squishes, bouncing, swinging and various other sensory activities, it is not really about food but feeding her body the sensory input it needs. We did also change the food she eats, alternating crunchy textured food with thick slurpy food – like drinking yogurt through a straw. All great sensory stuff.

    Reply
  3. He’s precious and wonderful.
    I’ve stopped worrying about what other people with think if thety know Colin has Asperger’s….I’ve started preaching it from the rooftops to people who want to be with him. He’s so fun, wonderful and adorable…that the Asperger’s just compliments it some days.

    Never worry about it…it’s who they are, what they are and how they do life…and it’s often better than whatever the hell we’re doing 🙂

    Reply
    • YES Audrey! Exactly…….knowing Diego makes my life about 10x more exciting. I’m always on edge about what will come out of his mouth- truly a great mind =)

      Reply
  4. Your son is devilishly adorable!

    I hear you about wanting to fix it NOW. That’s the hardest thing for me to accept (well, after the whole NOT EBING ABLE TO FIX IT battle, but…), that it will happen on a timetable which I cannot control and will ot ever even know. *sigh*

    Reply
  5. oh and btw, he is REALLY dang cute. is he single? cause i know this great 1st grader .. 🙂

    Reply
  6. baby steps lead to quantum leaps .. like you, i want it all now – over time i’ve come to slow down, to look for progression rather than resolution – it’s not an easy adjustment, but it’s a gift i think.

    one of kenz’s favorite sensory activities? a can of shaving cream on the counter top. she hides her figurines in the ‘snow’ and takes cars in to be ‘cleaned’ .. she also loves loves loves flour, but it’s a pain in the arse to clean up 🙂

    Reply

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