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Completely Drained

8:40:00 PM Posted In , , , Edit This 0 Comments »
That's the only way I can think to describe how I feel. Completely and totally drained. I don't think many people realize how much...heart, soul, mental investment, emotional investment, psychological energy it takes to raise a special needs child. Rob and I are trying desperately to find a way, some way, any way to make our lives run smoother. We so desperately need to find a way for everyone in our home to peacefully co-exist. We met with Pattie (Gavin's psychologist) tonight without Gavin. I felt bad taking his appointment but at the same time we needed to come up with some sort of plan of attack. Plus I think we really needed to hear a lot of what she had to say.

First and foremost, no one understands because they can't. They haven't been there. They don't live our lives. We do. It's no one's fault for not understanding. It's simply the way it is.

Secondly, we've spent so much time investing everything we have (and then some) into Gavin that we don't know how *not* to live that way. We don't know how to live without giving Gavin everything. And that's something we need to learn because we have Elliott Richard now and soon another little one who deserve our love and attentions just as much. She stressed that we need to find balance. And that yes, as horrible as it sounds, we need to invest a little more into Elliott Richard and the new baby simply because it is more likely to stick with them. With Gavin it sometimes feels as if we are pouring all we have into a bucket without a bottom. We keep pouring and it just keeps spilling out onto the floor. Nothing sticks. Everything is lost. It's not that we don't want it to stick or that Gavin doesn't want it to stick. It's simply that it is unable to stick, almost as if Gavin were made of teflon. And that's okay. We give Gavin loads of love and attention. We play games with him. We read books to him. We watch movies and his favorite TV shows with him. We just need to understand that it can't still be "all about Gavin" because Gavin isn't all there is anymore.

Gavin is a sweet, intelligent, generous, absolutely wonderful little boy. I have loved him, as cliche as it sounds, long before I knew him. And it hurts my heart to know that there will always be a canyon between us. That I will not be Jenny McCarthy. He is not be her son. Changing his diet. Trying new meds. Those things do not work. And we didn't catch it early enough for the early intervention. For example, whenever I leave the room for any amount of time more than 5 minutes Elliott Richard will throw his arms around my legs and hug me upon my return. Almost as if he wasn't completely convinced that I was going to return at all. A few days ago I went upstairs for a while and when I got back Elliott Richard ran up and threw his arms around my legs. I stood there and I could see the proverbial light bulb go off above Gavin's head as he watched the exchange. I saw his "ah ha" moment of "Oooohhh, that's what I'm supposed to be doing! Every time Mom comes back I'm supposed to run and hug her." At that point he stood up and threw his arms around my waist. Not because he wanted to. Not because it felt right. He did it because he was following Elliott Richard's social cues as to what was right. And while for Elliott's current stage that was age appropriate behavior, that's not age appropriate behavior for Gavin. It's just so frustrating. My baby is right there. I can touch him. I can hug him. I can kiss him. But he isn't really there. He's locked inside. He's locked away in a place I can't reach. Ever.

At this point the plan of attack is this:

1) K.I.S.S. (Keep It Simple Stupid)
2) We are going to invest in a laminating machine so that I can make cards for Gavin. I'm going to label EVERYTHING. The first thing to go with Autism/Asperger's is common sense so I'm going to take the guess work out of "Please grab the trash bag off the dinning room table." by labeling it "dinning room table" etc. Then I'm going to make up cards that say "Brush teeth", "Get dressed/Changed clothes", "Feed cats" etc. When he wakes up in the morning I will give him a card for each thing he needs to do, one at a time so that he has a constant reminder of what he is supposed to be doing. I am going to laminate these cards so that they will be harder to destroy. I'm also going to make a full sized page with outlines of his shoes and place it by the front door where his shoes go every time he takes them off, thereby eliminating the "where are my shoes" nightmare.
3) We used to have a schedule that was planned out down to the minute. We've since learned that does not work for us. Our daily lives are constantly changing, evolving so we need to have a routine of we do A, B, C in that order but without the set times.
4) Gavin will be seeing Pattie every other week. Rob and I will be meeting with Pattie once a month to discuss our plan of attack and tweak it, if need be.

I pray every night for God to make me saner, make me more patient, help me be more understanding. I ask him to make me more, better and to help me. I will continue to pray to him for these things. The road is only going to get harder to climb these next few months. My restrictions will be more intrusive. My bed rest will be a permanent thing, rather than on a needed basis. My stress level will climb with the increased restrictions and my sanity will falter because it is more difficult than you would think to be confined to the bed/couch. We desperately need to have some system in place before these things happen. So if you are the praying kind, please pray that we find peace. Pray that we find a system that works for us. Pray that we discover a way for all of us to peacefully and happily co-exist within our home - without driving one another insane.

Sleeping Beauty

12:44:00 PM Posted In , , , , , Edit This 0 Comments »
I cannot wake up today for the life of me.

Elliott Richard woke up at about 6:30 or 6:45am, which may be sleeping in for some of you (Debbie, I still don't know how you do it!) but that's *early* for us. I drug myself out of bed and off we went downstairs. Usually once I'm moving around and doing my daily routine I wake up. Not the case today. I was going through the motions. I think I even ate a bowl of cereal. But I I dozed on the couch from 6:50am until about 9am when Rob woke up. (Just an FYI, Noggin shows make for some seriously screwy dozing dreams! lol) I think I may have even fixed Gavin a bowl of cereal and a glass of milk, although don't quote me on that because I'm not sure. lol When Rob woke up he had to get ready to go to work but was worried I wouldn't be able to stay awake. I seriously don't know what is going on with me. I've been getting *plenty* of sleep. Heck, I woke up at 7:45am (the usual time in case you were wondering) yesterday and took 2 naps (1 for about an hour and the second for nearly 3!). Granted I didn't get to bed for the night until midnight because Rob and I were watching the premier episode of "Law & Order", which has been missing since May of last year. So I was super excited to watch. But I typically don't get to bed before midnight anyway so I doubt it was that. I'm thinking it's related to the Darvocets I'm forced to take. (I'm prone to migraine headaches, although when I'm not pregnant they are not tied to my hormones in anyway. However, whenever I'm pregnant all the extra hormones amounts to many, massive migraines. I see Dr. D on Monday because the migraines are already so bad and I'm only 11 weeks. *sigh*) But I took my last Darvocet at 6pm last night so I really doubt I was still sleeping it off at 7am. Who knows. Maybe I'm just channeling Sleeping Beauty. Yeah, that's my story and I'm sticking to it. ;)

In other news, our health insurance is causing problems with Gavin's speech therapy. They want updates and re-approval every 3 months - even though they give approval for 6 months at a time. However, his speech therapist, Melanie, turned in her request 3 weeks ago and they won't approve it. They won't say why. I hate this. He needs the therapy so that his speech can improve, thereby allowing him to communicate with the world around him. It's already difficult enough for him to communicate and they are only making it worse by setting him back. Everytime I try and call to complain it says I'm being transferred but then they disconnect me! I'm so sick and tired of beurocrats who have no experience in the medical profession deciding which services my disabled 7 year gets!!! He *needs* these services if he is ever going to have the opportunity to function in normal society!!! He *needs* these services if there is to be *any* hope of Gavin not living in a group home once he's an adult!!! He *needs* these women to help him to make even the smallest sense of the world around him!!! I can't help but wonder how quick they would be to cut services for the sake of "the bottom line" if it were their child on the line? How quick would they deem services "unneccesary" if it directly effected their child, their family and their day-to-day lives? Again I ask, when did the medical profession become all about the money thereby dropping the care of the patient to the bottom of the list?

Ah...true love...

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