Monday, February 9, 2009

And now...the rest of the story

So I am up to basically our recent ordeal, but I will go back to about September - October time frame. I have all this stuff on my calendar at home in DC, but the dates escape me now at this late hour and in my fuzzy state of mind these days. In between my parents visit and Jordan and Callie's visit Eli had gotten to a point of no return with his meds, I was calling his psychiatrist twice a week, and finally at an appointment with his Dr., this man basically threw up his hands and told me that he couldn't help us. He said he'd tried everything that he could, and he suggested residential treatment at that time. He said he'd keep up on the scripts for what he was on currently, but that as far as anything new, he was at a loss. So I went home, did research, and what I found was that lithium seemed to work especially well in kids with these issues. I consulted with other moms, I did research, I weighed the pro's and con's, and then after printing out ooodles and ooodles of pages of research, I made a same day appt with Eli's doctor and went in armed. I had this meeting with him, and he dropped my papers in the trash right in front of me and said that he refused to put him on Lith. Okay, I did all I could do. He refused to do any more. I was on my own.

Life continued on stressful. Eli would wake in the morning at 6am, need to be dressed and already demanding things from me and yelling at me. He would literally come into my bedroom and tell me what I had to do. Norman and I repeatedly made him rephrase what he wanted and both of us REFUSED to follow his orders. We were strict in that he had to ask politely with a please AND we had to get a thank you. Manners are important, and regardless of the issue, he had to learn that he couldn't boss us around. PERIOD. We were also dealing with CONSTANT refereeing. Eli had all the playroom full of toys, but the one Chase could get ended up starting WW III. He would run up and body slam Chase for no reason at all. His door had to remain closed at all times. Seriously I could barely squeeze in and out when I had to go in there. Cleaning his room brought him to tears and started another battle. He seriously get so overwhelmed, no matter how messy or clean it was, and he had no idea where to start cleaning. The ONLY times that he could clean it without crying was when I would point out an item and tell him where to put it. For as long as I can remember, this is the only way we could get him to do the work. As easy as it seems for us to scoop up our things and throw it in a toy chest or big toy bin, he couldn't do it. He had to be told. EVERY SINGLE TIME. And I know some people...okay...perhaps most people would counter that it was just a stalling technique. I'd say maybe that was a possibility in the beginning, but it got to the point that he seriously was distraught and crying real tears of frustration. It wasn't that he didn't want to...he just couldn't.

He loved his baths, but something as simple as sitting down and taking off his socks would lead him to rage. Kicking me, the tub, the cabinet...anything in his way. He would just scream and thrash about out of frustration and WOULD not pull off his stupid sock. Eli + socks = meltdown. Every single time. *sigh*

Specific tv channels, snacks, lunch, toys, outings, pushing people off of slides, pushing Chase down...

Those were the norm. A BIG one is his fascination of the color red. Even when it comes to the Metro, some seats are red and others are blue and yellow I think...I can't remember. But regardless, Eli would start whining from the time we entered the metro station to the time we got on about how he HAD to sit in a red seat. So anytime we got on the train and the seats were full, Eli would freak out. Seriously freak out. Scream, yell, thrash around...cause a big fit. And all the time we would try to be calming him down he'd be screaming back at us, " I don't want to get quiet, I want a red seat!!". I'll never forget the day the most feeble man with a walker got up to give Eli his seat. I was so embarrassed, and I couldn't look at him the rest of the ride home. Bless his heart, he was so kind to us.

This was life. I tried so hard to keep the boys apart, and was so scared to let them play together at all. That is harder than you'd think, when in truth Eli truly loves Chase and doesn't want him to get hurt. I do believe that he doesn't want to hurt anyone, it's just...something that happens. Maybe it's denial on my part, but I believe he has a good, sweet, kind, loving heart. And of course Chase loves his big brother and wants nothing more than to be like him, so he started picking up on the pushing and that junk. So that was another battle.

Well, we got to the point where every moment of every day was filled with fighting, tears and frustration and I finally realized I couldn't do it anymore. So we took him to this place in Virginia...a hospital...where they could take him off his meds and start over. Evaluate him and hopefully get his meds right. He was there for 10 days. It was the most awful time, but then again, it was a much needed break for me. We would visit Eli every night and he never understood why he was there. Bottom line with that stay - they added Lithium. He started acting more stable, so they sent him home.

He was lovely and "normal" and sweet, and we had a wonderfully NORMAL existence for week. I don't know if his body got used to the medicine, but the decline began. It was steady, but slow...and so slow that we didn't realize it was "that bad", until I was falling apart again out of frustration.

I was yelling at Norman, crying all the time, freaking out about stupid things...I was just exhausted past my limit, and poor Norman was the only human I could talk to, yell at, confide in, and let in on my true feelings - because he shared them with me. He saw it all and was helping as much as he could...And he understands...and puts up with my rollercoaster emotions. God bless him. I love him so much, and he is a blessing in my life that I don't deserve. I love you Norman.

This continued until before Christmas, and I was at that point again, but we knew we couldn't take Eli back to the hospital for a med change, because they would keep him and we wouldn't be able to go home for Christmas. What would people say? Why am I so concerned about everyone else when I am falling apart at the core? But we decided that the change of being at Nana's and Papa's farm would do him some good, and we came on out anyway.

It didn't help. He was an energetic ball of fire. From sunup to sundown he was running. Bouncing around the house, running over people, knocking stuff down, being mean to Chase...and my fears were constant - 1. That Chase would get hurt (because just one month prior, Eli pushed Chase into our glass coffee table in a tug of war and Chase needed stitches in his head) 2. That things would get broken 3. That when we were in public people would think badly of my child/and my parenting ability 4. And that when we were in the company of other children that they would get hurt. (I don't mean that one to be in last's more like in second place, but I just now got to typing that one...).

Somehow we muddled through that visit, and then we got down to our turning point moment. Our moment in time where things changed for us, and we HAD ENOUGH. The flight home.

I won't even get into how bad the airline screwed us over, because seriously, they made us miss flights, have excessive layovers, be rude, lose our reservation...oh wait, I said I wouldn't get into that. Eli started behaving in ways we'd never seen. He was out of control. He was barking like a dog, biting Norman's shirt, thrashing all over the place and kicking the seat in front of him, yelling...he was "THAT KID" you cringe when you see in line at your gate when you are about to board your flight. I knew it. I wasn't stupid when even standing in line waiting to board the plane and Eli was whining excessively and people were shooting us looks...but what can you do? I'm sorry people, but I'm not going to drive 30+ hours just to make sure you have a pleasant flight. I have to get my child home pronto, and I'll do the best I can. I have definitely grown in the compassion area when it comes to people and their children misbehaving. All I can think to myself is "Thank God it's not mine this time...". And so we did the best we could.

When we arrived at the airport and we were standing by the carousel waiting on our luggage, Eli was fascinated by it. He just had to put his fingers in it, and I was scared to death he'd lose a finger or two or all of them... if he got them snagged in the small opening along the edge of the thing. So I tried to coax him away from the thing. He refused. I tried talking to him again. He refused. I finally took him firmly by the hand and tried to lead him away from it, and he hit the floor. Seriously he just dove to the floor and started swinging at me and screaming and crying. I was HUMILIATED. Why did MY child do this? Why did God give me THIS cross to bear? So I picked him up and hauled him out of the airport once we got our luggage and Norman and I had decided by the time we made it to the car that he was going back to the hospital. We couldn't deal with him anymore. It was past our ability to understand, parent, help, control, and we were struggling.

That night when we got home, I did all of his laundry, packed his bag - because I knew they would admit him, and got him ready. And all the while he was crying, begging, pleading with us not to take him. "I'll be nice, I'll do better Mommy, I'll love on Chase and be nice to him". Those phrases I hear even now as I sit here typing and I feel like crying, but where are the tears? I think I've cried my quota for the week and it's only Monday? He would tell us these things, and many times...MANY times we've tried so hard to believe him, but like every other time before, just seconds after he would promise so lovingly to be kind to Chase, Chase would wind up in tears because Eli had pushed him down, taken something from him, been mean to him or just outright run him over. Enough was enough. It was so hard to look in that little precious face and know that I had to take him. I know he doesn't want to be this way, but I can't help him. So the next day we took him.

And he stayed from New Years Eve until January 24th. They got nowhere with him. The staff was amazed that it took their entire child's unit staff to keep up with him. He exhausted them. He yelled at them too...told them they should be fired when they put him in time out. Kicked at them, hit at the other kids, stole their red things...They couldn't get through to him. And that is when the doctor started talking to me about Autism. Up until that point it had been a string of things. Sensory Integration Problems, Mood Disorder, Bipolar Disorder, ADD, ADHD, and on and on and on. But this is when (even though I had asked about autism repeatedly to his doctor) that I finally heard those words from a doctor. She strongly urged that we get him somewhere where they could do the testing and intense searching and deep therapy to truly get to the bottom of things and get him help. I agreed. I was at that point. And that is when we heard about Meridell. So our family social worker contacted Meridell and got the ball rolling. We got on the waiting list and were given the arrival date of February 3rd, and that brings us to the present. We have tried. Tried and tried and tried until we had nothing left and no one else to give us suggestions. Every idea we found online failed. Weekly therapy failed. We couldn't get a right medication combination to save our lives, and all the while Eli was getting older...and needing something he wasn't getting. So we had to do IT. The (some would say) unforgivable sin of sending our precious boy away. But we have no other option. It's bottom of the ninth...we have got to get him stable so that he can begin school on time...and be able to learn and function with other people.

So here I sit. Now the tears have found my eyes and they are coming...I'm on my parent's couch in Oklahoma, my sweet, precious baby Eli is in Austin, Norman is in DC, and Chase is here with me. We're all strung out here and there, and my heart is broken in a million places in all those different places. I think to myself that this HAS to work, but I just cannot get my hopes up so high that if it doesn't that I am crushed. I am human and so very weak, and I am reminded of that daily.

I am cherishing the good moments here...the time with my parents...wonderful dinners with friends (Thank you so much for that Melinda...I appreciate you truly), and trying to appreciate the small things that in truth are so huge. The fact that my parents and many friends are so loving and supportive is perhaps the biggest gift of all.

I go down again on Thursday to see Eli, and Friday morning is my first family therapy session. I will keep you posted, as you know this laptop is attached to my body. Thank you so much for reading this, especially if you got this far. I love you all so are so dear. Please keep praying for us... Thank you.


Nikki said...

Oh wow Stacey. I don't even know what to say. I'm completely in shock. Thank you for keeping us updated. Tell your parents hello for me and get some rest before you have to drive back to Austin. Be careful!

Ally said...

Still thinking of you and praying.

Wendy said...

You guys have been through so much. I just ache for you. I will keep your family in my prayers. Even though you feel horrible about having to send your son away, you have to remind yourself that you are doing this for him. If it helps him in the long run, then this sacrifice is worth all the heartache. You are doing the best you can, and better than most people could. *hug*

Stacey said...

Thank you Wendy...I sooo needed to hear that right now. It's always so tough, especially when I have to say goodbye to him and go back to OK. :(