Saturday, February 28, 2009

Visit Details 2-27-09

This visit was number 3 for me, but it was the first visit that Norman and I were able to go together. From our perspective it was a wonderful visit. From the staff, however, it was not seen as well. I will explain that later on in the post.

We met with Micki, Eli's therapist at 10 for the weekly session - the first part of which was without Eli. Some things that we learned at this weeks session include...

*All neurological testing is completed (minus the EEG - they are still trying...)
*His eating seems to be looking up bit at least. They have taken away his desert privileges on the nights that he doesn't have a vegetable, protein and fruit. Those are the prerequisites for him to have any kind of treat. They have a staff member sit with him and report on everything he eats. (This is a huge relief to us)
*His aggression is still the same, but hopefully switching from Depakote to Tegretol will give some improvement.
*They are impressed with his schoolwork and level of knowledge he shows. This is HUUUGE to me because they "GET" him. Anywhere else they would call him unteachable and probably behind in his abilities, but that isn't the case at all. He just has to be taught in a way that reaches him. And they are reaching him. He does the best in school. He has to have a one on one classroom help to re-direct him back to the activity when he gets sidetracked. They said that it is imperative for him to keep the activities short, with clear objectives, and then a reward to work for. But he is excelling, and they SEE how smart he is. It matters that others see it, because it does no good if I'm the only one who sees potential in him.


They told us that he is reading at a end of Kindergarten/beginning 1st level, and I am so happy with that. Considering he's only been in Kindergarten for 4 weeks now, that is awesome.


After that, Eli joined us, and he was over the moon to see Norman. From there we went to lunch where we bribed him to eat a turkey sandwich in exchange for some of Norman's curly fries. He ate well...which made us happy. We went from there to Point Store (which I promised to fill you in on and haven't yet, but I promise to). He picked out a flute/recorder thing, and then we went to the family center to play pool. After that, we went outside and played with one of Meridell's campus cats, Jill. I clipped Eli's fingernails and toenails, and got his grooming up to date. They cut his hair this week, and he looked so adorable. Short hair and nails...I was happy to get to do my mommy stuff.

After that, we had him rejoin his class and go back to school, and Norman and I went to his dorm to re-arrange his closet and I was glad we did. Norman found some of Eli's pajamas in his roommate's dirty laundry, and I found that someone else's socks had ended up in Eli's laundry. So at least some stuff is staying kind of neat and in order. He has lost an expensive zip up fleece that my dad bought him at the Columbus Zoo, but so far, that is the only missing item.

After that, Norman and I left to do some shopping and kill some time while Eli was in class, but we went back after school was out,and we took him to a playground to spend one more hour before it was his dinnertime and time for us to leave.

Leaving was was so good to watch Norman and Eli chasing each other and playing on the was really sad to have to stop that and say our goodbyes. The sadness in his eyes is almost more then I can bear, but even worse than that is the feeling that I have to stay so strong and I don't know what that must seem like in Eli's eyes. He didn't want to let us go, and one of the nurses had to take him by the hand and lead him off to dinner. I know that after we leave, things get back to normal fairly quickly for him, but for Norman and me it's not that easy of a recovery time.

I almost forgot to explain why the day didn't go so well in the eyes of staff there. Apparently after we took him back to class, he had alot of aggression. He was so cheery with us,but as soon as we left to let him get back to class, apparently he had a meltdown. He was hitting and pushing other kids and doing some spitting type actions. He doesn't actually spit..he just makes the gesture of it, which is obviously enough for staff to take notice.

We asked him later why he did that, since he had been so happy and knew that we were coming back, but he didn't know. He never knows...and we've learned that it isn't an excuse. He simply has urges to do things...has no filter to make him think about whether he should or he follows the impulse. That's why he's it's no surprise..or at least, it shouldn't be. I still am shocked sometimes.

Okay, time to wind this up, find the potty and head to our gate. This has been a great timekiller!! :) Sorry it got so long... ((HUGS)) I'll do the point store post next...

Wednesday, February 25, 2009

Phone Call

If you read my main blog, you read that Eli's doctor called and trapped me half naked in a dressing room while the store was closing tonight. That was kind of scary. But the bottom line of the call is that they were asking my approval to do a med change. They are stopping the Depakote (THANK GOD - IT DIDN'T WORK ANYWAY), and they are staring him on Tegretol, which is an anti-convulsant medication. They said that it works better than Depakote, and with children his age they've had a much better success rate. It sounds as if they have lowered the dosage of meds to the point where they are now starting to add some stuff back in, so we'll see. He's never tried this, and as with all new medications, I'm hopeful that maybe this is IT. The "magic pill" that will bring my little love back to me. I'm not naive, many times and how many meds have I prayed and hoped for this? We'll see...maybe it will bring him around enough for us to get to spend Friday with him. Please God, let this be a positive change for him...

Tuesday, February 24, 2009

The details of 2-20-09

I'm sorry it has taken me a while to post the details of Friday's visit. It has been a rather emotional thing for me, and I finally decided I should sit down and write it all out.

Mom and Chase went down with me last Thursday, and I'm thankful that they came with me that particular trip. Friday morning we had the appointment with his doctor at 10:00, and that went well. He still needed prodding to stay with us in the conversation, but overall he did better than the week before. A couple things that his doctor discussed with me before Eli joined us in the visit were...
* They've attempted to do the EEG twice now. No surprise he wouldn't keep still long enough for them to get readable results.

* He is starting on all of the other testing...problem solving, IQ, other neuro stuff, physical tests, coordination...and on and on. They are guessing that it will take near a month to get through it all since they have to do it in such small sessions.

* He is still not transitioning well from one setting or activity to the next. All kinds of change (in any form) is very difficult, if not flat out impossible.

* He is still very aggressive, and it's getting worse as they bring him down off of his medications more and more. They are working diligently with him on boundaries and personal space and not touching everybody. He pesters people to death sometimes, so this is a big one.

* He is down to a fouth of some of his meds, and others are down to half. Soon they will start stripping away each complete medication, but they are doing it so slowly to see what each med does for him, as well as the side effects that each one brings to his system.

* He has been getting more yellows which is an least he's not getting all reds all the time.

*Nutrition is now a big issue. He is not gaining weight...and hasn't been for a year. He is PICKY with his food. When he was little he would eat everything, but now if it's not a peanut butter and jelly sandwich, more than likely he won't eat it. He's so thin, but it is good to know that they have nutritionists watching him and meeting with staff to figure out how to get him to eat different things. They are probably going to assign a cafeteria buddy to him to monitor what he's eating and to keep us posted as well.

Then after those things were discussed, Eli joined us. He was more engrossed in playing with the toys in the office than in keeping up with the conversation, and he had to be asked questions sometimes 3 or 4 times before we could get a good answer from him. But he was in a good mood, and was chirpy and happy to know that Nana and Chase were waiting for him.

When our meeting was over we went to the lobby to get mom and Chase, and the reunion was very sweet. Eli ran to Chase and hugged on him first, then went to my mom and hugged her for a bit. He was enthusiastic and very careful with Chase.

Lunch went well. I got him to eat most of his hotdog and some french fries, and it was really pleasant for the 4 of us. From there we went to the Point Store for his reward time and he decided to save his points for next week. (I'll explain Point Store in a post soon). After that, we all played ping pong and had a good time. Everyone was happy, cheerful, and things were going very well...just as I'd hoped they'd go. I posted two pictures of the ping pong time on my main blog, so go check those out if you haven't seen them. He and Chase were so precious together, and I was just overjoyed to see my boys together...the way brothers should be. It was all just going so well...

And then...

I had noticed that even from the time Eli joined the meeting he had been dancing around and grabbing himself the way little boys do when they have to go potty. I tried to get him go go during our meeting, but he was afraid we were going to leave, so he refused. Then during lunch...same thing. Then Point Store...same thing. So I finally put my foot down and made him go, promising him that we weren't going away and we would be right here. Well he went, but that started an enormous freak out session. Screaming, crying, pushing people, throwing things. He pushed Chase down a hill outside, and there was no reasoning with him when we tried to talk to him. One of the girls came over to see if we needed help, and he just exploded again, so we decided it would be best for me to leave. I went inside and talked to his doctor and she agreed, so in Eli's tantrum I simply went over to him and hugged his thrashing body and told him goodbye. The lady tried to lead Eli indoors, but he wouldn't go willingly, so she called out for help, reassured us that we were doing the right thing by going, and then she put Eli in a big bear hug and carried him inside kicking and screaming.

And that was how we left. He just was too stimulated by our visit. The change threw him into shock basically and he couldn't cope with the change in his day. We debated going back later, but we didn't want to upset him once they had calmed him down, and the doctors agreed.

That was at noon, but since I had arranged a time to meet a nurse to let me in to his room at 1 we hung out just in shock at what had just taken place. There were tears and a lot of silence, but the time passed, and we were able to get into Eli's room. It makes me feel better to be able to sort thru his things...pair outfits together and make sure stuff is in order. That's just the momma in me. Just before we were let into the room, we got to watch him going back to school with his class...all in a single-file line, and he was skipping along so happy. Things were back to normal for him. All was well in his little world, and that solidified our decision to not show up and disrupt his routine again.

We left with his room in tact...everything in order, but our hearts broken into a million bits as we drove away. There is no word in the English vocabulary that can describe how this feels. I know that this is what he needs...I just have got to learn to separate what I have believed a good mother does, and do what a good mother would do in this situation. You have this need to never leave your child...never turn your back and walk away. Yet that is exactly what I have to do for his sake. He is wired completely is mind boggling, and I don't know that I will ever understand what it is that he feels and goes through.

I'm sorry it took so long to update this...

I've been waiting on a call back from his doctor to discuss whether or not Norman and I should include the visit with Eli this Friday with the appointment. We're not sure that we should see him until they get his meds more stable... This is hard because Norman hasn't seen Eli in a month. But I'll keep you posted once I get to talk that over with the doctors. Who knows what we'll end up doing. I'm going down there regardless, and Norman and I will be able to meet with the doctors together...which will be nice. I've missed him so much.

Thats all for now. Thank you so much for reading and for praying for us. ((HUGS))

Friday, February 20, 2009

Rough Visit

Our visit did not go well...we only got to spend about an hour and a half with him before we had to leave. I'll write more about the details later, but please keep him in your prayers, and also remember those who are caring for him. They need prayers too. It has been a hard day...

Tuesday, February 17, 2009

Details of last Friday's visit

I realized that I better update on the details of Friday's visit before it was time to go down again and then I'd really be getting behind! This past Friday was the first visit we had, and he had been down there a total of 11 days.

They wanted to observe him in school there as well as his interactions with the other kids on his meds. We all know they weren't working, but they needed to see where he was. After a few days of that, they slowly started pulling him off of them, and they are still in that process of getting him off of everything to see him at baseline. Obviously an angry child off of meds is not an easy thing to deal with, and they have definitely had their hands full.

In the therapy session, his doctor and I discussed him - without Eli present for the first half of the meeting. She said that it was evident that he is very bright. He has done a lot of talking about history and President Lincoln. He has really amazed them, and his teachers said they are constantly shocked at some of the things that he knows and says - especially for his age.

He also is able (when he is in control of his emotions and feelings and having a good day) to tell you what he should do when he gets upset, what "coping skills" he has learned, and he will tell you how they are supposed to help calm him down. The bottom line is that he has shown the staff and the doctors there that he KNOWS the right thing to do. If he could just stay level headed enough to be able to think about what he knows then we would be making big progress.

Halfway through our meeting, Eli got to come in and that part was really strange. He was really withdrawn and didn't really talk. Once our meeting was over he started really warming up, and we spent the day playing and reading books, playing pool, air hockey, baseball and on and on. I did have him go back to school in the afternoon, because I didn't want my visit to completely throw him off of his routine, but once school was over we resumed playing and I did a few mommy things like clipping his nails and inspecting his hair to make sure he was washing it and so on. It was good to just SEE him and love on him and have time with him.

They did do an EEG, but the results weren't back in time for our meeting, so I am sure I will find out the results of it this Friday. One interesting thing that I witnessed was the fact that even though there are many children there, he is more content to play alone. Even when invited or tossed a ball to play and join the group, he gives the ball back or takes it and goes his own way. That is heartbreaking as a mother to see, but it gives me more relief in the sense that he IS in the right place, and this is the best thing we can do for him at this point.

I just made my reservations for this Thursday and Friday, and my mom and Chase will be going down with me this week.

The one thing that we found was that Saturday after I left, Eli had a horrible day. He was angry, and lashing out, and it made me question whether my being here and visiting was in his best interest. We will see how this weeks visit affects him; hopefully it was a fluke and he simply was having a bad day. But if he has the same pattern this Saturday and next, when Norman is able to visit, then I will have to strongly consider taking Chase and going home to DC and making our visits less frequent.

I keep praying that whatever I am supposed to do...whatever is in Eli's best interest...will make itself clear. Perhaps Eli is showing me that the visits are too much for him - at least right now. Only time will tell. I am anxious to see him again though...anxious to talk to the doctors to find out if they have discovered anything new that might give us some answers or help. I know that is too much to ask at this point, but I keep praying for it regardless. Hopefully we'll know more Friday...

Friday, February 13, 2009

Today's Visit

In another post I will update you on what information I got. I had the family therapy meeting with one of the doctors, and Eli joined us halfway through that appointment. I also got to meet with his teacher and the classroom assistant, who lately has been more like Eli's personal assistant. I promise to fill you in soon on all the real info, but I am too tired to think and type it all out. So I will make this a short picture post to sort of walk you through our day. I've got quite a few pics!!! :)

Our first stop after our therapy meeting was lunch. They had a Valentine's Day Party, and celebrated with ice cream and lots of toppings, and I had to take a picture of Eli chowing down with ice cream on his face. So cute.
Then from there we went and spent some time inside the gym where Eli played with his friends, and then he and I went outside and played baseball. I was able to sneak a pic of the gym before anyone else showed up. The thing I really observed during that time, when he was on the court playing basketball and I was just watching him interact with the other kids, was the fact that they were always playing together in groups of two or more, but Eli really did his best to avoid them and was happy (or maybe not happy, but more comfortable) by himself. Even when someone would try to join him, he would go someplace else. That was interesting for me to get to see that.
After that, we went outside and I had a chance to go to my car to get his gift that my sweet friends from Hinton put together for him. Melinda and Shawna and Jennifer...thank you girls so much for putting those things together for him; they truly made his day...and mine! He says thank you!!!!
From there I went to meet with Eli's teachers, and I asked them to pose for this photo...They were so sweet to oblige...

Then, Eli went back to school for a couple of hours and I went to his room to organize his closet. It was a mess. Folks, the kid is 5. For the love...they do his laundry, fold his clothes and then leave them in the laundry basket. He is supposed to take his basket from the laundry room to his room and then put everything away... Well, he did his best to put stuff away, but NOTHING was matching. None of the pajama sets were together, none of his clothes were paired right...This is what I found when I got there.
And then after I fixed it, this is how it looked...
And here is a picture of his room with his new bedspread and some stuff decorating his board...

And then before dinner we hung out in a rec room and played pool. Yep, we're cool cats and my 5 year old taught me how to play pool. At least that's what HE thinks. :)

Thanks for keeping up with us...I'll post the details soon!!!

Wednesday, February 11, 2009

phone call and travel

Last night Norman talked to Eli, and he said that there was a pretty noticable change in his ability to pay attention on the phone and actually carry on a conversation. He got a "red" though, which means he had bad behavior that day, and when prompted Norman found out that he hit this kid named Xavier. He has been doing stuff like that every day, but we think they changed his meds in the evening, so we'll see how today went. Hopefully he will be better today.

He also told us that they "took pictures of my brain" so I am anxious to meet with the therapist on Friday to see what test they actually ran, and what they found.

I leave in the morning to drive back down to Austin, so I would appreciate your prayers for a safe, uneventful drive. I'll update soon! :)

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.

Thursday, February 5, 2009

More on the history of Eli...

So I left off on the history post at the point where we had taken Eli out of Pre-School. I HATED that...He loved going, and he just loved learning. The problem was not that he couldn't learn, it was just that he couldn't learn in that environment. And we didn't know at that time how to make it work for both him and the teacher.

It was his last day in class, when I was talking to his teacher and thanking her for all of her help. She took me aside and confided in me that she believed that there was a legitimate issue. Perhaps even more than ADHD, and she strongly recommended that I see a doctor. It was at that point that I got the most valuable piece of information. She told me that the pediatrician is the last place I could go for help. That has proven true so many times, and if you can come away with ANYTHING from this blog, let it be that if you have an issue with your child, skip the pediatricians office and head straight for a child psychiatrist/psychologist. Some pediatricians are great to give referrals for good child psychiatrists, but all I would ask them is for their advice on a specialist. Don't waste your time with discussing your heartaches with your pediatricians. This is what I guarantee you will hear...

*It's just a phase and nothing to worry about
*You're worrying because he's your child...don't worry, it's a normal part of development
*All kids do this, behave this way, have these quirks at some point or another.
*You're getting worked up over nothing...he's normal

Those are the WORST things you can here when as a mother, in your gut, you KNOW something is not quite right.

So I took her advice. It wasn't easy finding a place to take him. First I had to contact our insurance and get a list of approved providers. I started calling all of the numbers on the list. First one - number disconnected, second one - wrong number, third one - they no longer take our was so freaking frustrating. I called the next to the last one and finally felt like we hit the jackpot...they took our insurance, AND would be willing to meet with us. CHA-CHING! Yea!!! So we made the appointment with this place called Advanced Theraputic Services.

This place turned out to be such a blessing. We found a wonderful behavioral therapist, and we worked with him weekly. We saw a psychiatrist who felt that Eli would benefit from (gasp and sigh) medication. I had always been against medication, fully believing that parents who medicated their children were simply ignoring their parental duty of spending time with their child and not putting up with the crazy amount of energy that children possess. But we were past that normal point of an energetic child. We were dealing with a child who had to leave a preschool program for lack of ability to fit in and follow the rules. We were dealing with a child whose tantrums were worthy of an Oscar, and often he had them for no reason or for dumb reasons. He also at this point was starting to show signs of anxiety. He was worrying over things, and we had no idea why. He was afraid Chase was going to get lost, or get into his things, even. And it was the summer when he was 4 that we really started to see his anxiety about getting his hair/head/face wet. He LOVES long as he can touch the bottom of the pool and as long as you don't ask him to put his head under the water. But asking him to dunk his head, or even put his face in the water to blow bubbles is like pulling teeth. He is so afraid of that. To this day he has anxiety with that, and washing his hair is a struggle most nights. Sometimes he is brave and does it without a fight, but mostly hair washing results in tears and frustration for him. But back to the swimming...It was a parent/child swim class, so he was fine as long as he could cling to me. He didn't trust the floatees around his waist to hold him up, so getting him to dog paddle on his own was virtually impossible.

At this point life was touch and go. We had weekly therapy appointments with this wonderful guy...Ray, who really "got" Eli. I was reassured by him and felt that often times Eli's therapy was more beneficial to me than to Eli. Every 2 weeks we met with the psychiatrist, trying to find something that would calm Eli down so that we could do "normal" activities like grocery shopping, mall shopping, and play at the playlands and things of that nature.

I need to say here that going places like playlands at the mall were nearly impossible and always asking for trouble. Eli had no concept of waiting in line. He would walk right to the front and push his way onto a slide. If someone was in his way he would push them out of it. Not out of meanness, I fully believe. I believed that then and I believe it now. He simply felt that he had the right to go down a slide and that he shouldn't have to wait. He didn't understand that children have feelings of their own and that they have rights too. There were a few times when he did wait, and those FEW instances had me holding my breath and thanking God that he was doing what he was supposed to.

This past summer of 2008 marked a huge turning point for all of us. Not only was Eli's behavior no longer tolerable, he was flat uncontrollable. He had gotten so sensitive to touch. Sometimes just barely walking past him and brushing against him made him angry. Sounds that are normal to all of us - the sound of traffic as you cross a street, the sound of the train coming in the metro, even mall music, sometimes just hurt his ears or bothered him greatly. He often walked around with his hands over his ears because things bothered him so much. He had always been really possessive, but he became very paranoid. His bedroom door HAD to remain closed. If I opened it before going to get a load of laundry to put away in his room, by the time I made it back down the hall with the laundry, he had closed the door. He had to have so much water in the tub for his bath. He had an obsession with wearing shoes indoors. It took forever to get him transitioned to wearing houseshoes, but when he found houseshoes, he wanted to wear them outside as well. Any thing that he took to, he took to it. Latched on and hung on for dear life, as though someone would rip it away from him.

He always complained of being hungry, but didn't eat. We found out that he was afraid we were going to run out of food. Now, let me say emphatically that we eat at every meal, and there was no rational reason for him to fear us running out of food. He also became MORE than picky at this point, and he will only eat about 4-6 different foods.

If he wanted to go out and we didn't have plans to, he threw a tantrum. He screamed. He screamed like nobody I've ever known, and wouldn't stop. If we were out somewhere and I asked him to behave or settle down, instead of cooperating, he would scream back louder than before and keep getting louder. We learned that sometimes grocery shopping got cut short...sometimes we had to leave a restaurant before our food came...sometimes we left playdates and had time-outs in the middle of stores. I learned to expect the stares...the looks of disapproval from older (usually) women, who I'm sure felt that he would behave so much better if only I had as good parenting skills as they had. A few times some of the looks were so pointed, and even muttered comments commenting on my out of control child, and I had enough and exploded back at them with something like, "haven't you ever seen a child throw a tantrum? Get over yourself and stop staring". That normally stopped the stares, comments, and even Eli's tantrums. Watching mommy holler at strangers was usually a good enough distraction to divert Eli's attention elsewhere. What a great example that was huh? I have definitely found my breaking point.

Something else that we battle is Eli's need to take things with him EVERYWHERE. He will be holding onto 5 little cars and trying with all his might to hang onto them, and many of the tantrums we've had have been because he refuses to put down his toys to open a door, or go potty, or turn on the tv, or whatever it is he wants to do, simply because he is afraid someone will steal his toys from him as soon as he sets them down. When we talk him through HAVING to put them down, he contorts his body...putting his feet and legs over the toys as if to hide them just so they will be safe. I can't count the times he has dropped cars out of his pockets crossing the street...He literally has to take all these things with him whenever we go somewhere...and it is usually so much stuff that he cannot possibly handle it all. That is so frustrating. He will kick and scream and yell and cry to get someone to help him with something, rather than just put down his toy and do whatever it is he needs to do.

We also went through this period of about 5 months where he was up, awake and ready to go by 6am. We're talking shirt on, pants on, socks, shoes, and often times a jacket even. He could NOT spend time in his pj's or sleep in or be lazy. He was very set on the fact that things had to be a certain way. The tracks had to be set right on his train table. If anyone changed them, it drove him nuts. He is a very specific child and demands that things be a certain way...if they aren't he has a very hard time functioning.

It is really at this time...this past 6 months specifically, that I have become so exhausted. So worn down. So frustrated and at the end of my rope. He had been on medication combinations for quite some time by this point, but NOTHING worked. Nothing seemed to help him be "normal" and calm, and to this day that is the one thing we are working on.

This is where I will stop for tonight, but tomorrow I will finish up and dig into the specifics that we've been battling over the last few months. Including his hospitalization in DC and specific fears, obsessions, and irrational thoughts.

A little tour of Meridell...

I'm taking a break from the history a bit, and going to explain what we are doing currently... I took Eli and enrolled him in a residential treatment facility called Meridell, in Austin, TX. Things have escalated to the point that he needs more help than I can give, so that is why he is now here. There will be more posts on his history of behavior after this...


I took some pictures of Meridell while I was there and wanted to share them with you. It was such a special didn't have a "medical" feel to it at all. It is so warm and comfortable and they genuinely want the best for each child and their families. I hate to have to say this, but if you or anyone else you know end up needing the kinds of services that Meridell provide, I highly encourage you to consider them. They have been a bright light for us in the middle of all the darkness...

So now on to the tour...
Of course I have to start with the sign you see as you turn off the main road...

There is a long, tree-lined gravel driveway leading up to the campus...I'm sure it has to be so beautiful in the spring...

Here is a picture of the school...

Here is the cafeteria cabin...

And some shots inside the of which is Eli helping clean up after eating lunch.

This is the type of signs they have telling you where all the different buildings are located. It is so "campy" feeling. It is great for the kids to not feel like they are uncomfortable and out of their element. They try their best to make it as enjoyable for the kids as possible...which is so reassuring for the parents...

Here is Eli's is called Liberty Hall

Here is the entry to his building...

And last but not least, here is one of the three cats they have. She was so is obvious the kids love playing with her. She followed me to my car and I had to make sure she didn't jump in!! So sweet!

So that's it! I'm anxious to talk to Eli this evening and find out how his day went...these phone calls are going to be so precious... I just pray he remains upbeat and happy to be in school and playing with friends...Until next time...

Wednesday, February 4, 2009

The beginning of the story...

I decided to begin this blog for many reasons. One was that I wasn't comfortable sharing all the details of this process with the entire world, two was that I didn't want our family blog to become completely dedicated to Eli. So many other things are going on that I want to be able to write about, and frankly Eli's story is so involved that I don't want to bog everyone down in details that they necessarily might not want to know. Eli needed his own space, and I needed my own place to vent, rant, cry and write freely without feeling like someone is judging me or being nosey for unkind reasons. So this is my spot to share Eli's story and our journey to finding out how to deal with this and help him. I am not alone, and that alone helps comfort me, but writing has always been very theraputic, so I wanted to write my way through this...

So, thank you for joining me on this blog and coming along with us on this emotional ride. I am so thankful for my faithful friends and your constant prayers.


When Eli was born, we knew that something was special about him. Not special in an "our first baby and he's perfect" special, but different special. In thebeginning we noticed that he was so fussy. At night he would be inconsolable, and at times I remember rocking him in my old blue recliner/rocker on base at Maxwell in Alabama, begging Eli to stop screaming. I would cry and ask him why he was screaming so much, but of course I never got an answer. He would only go to sleep if I rocked him, so that became our routine. All the ideas I had in my head before I had him were discarded pretty much immediately. I was so tired, that I gave in to the co-sleeping. It worked...Because I could rest. Around 7-9 months or so we had the discussion with our pediatrician about getting him to sleep in his own crib. I wanted to reclaim my bed and be able to roll over without the fear of waking him up or rolling over on him. We did all the methods...stand by the crib but don't touch him and then slowly back out of the room... ALL of the books methods we tried, and so we finally approached his doc. We were at the last resort method - cry it out method.

We tried it...we really and truly did, but Eli was a crazy baby. That child would SCREAM for hours...all night long. Most kids do "cry it out". They eventually tire and go to sleep...but not Eli. The more he screamed, the more he could scream. He did get tired...he was exhausted...but he would keep going. So back to the rocking we went, and I don't know how long we did that before he got to where he would go to sleep in his crib.

Other than that he was a pretty smiley baby during the days...he was a gorgeous baby, and his angelic face kept me from losing my mind during all the exhaustion we endured. But eventually he did learn to sleep on his own.

From the time that he was teeny tiny, we noticed that any friction of any sort caused him extreme stress. We were having problems at that time with my in-laws, and often times there were raised voices and arguments, no matter how much we tried to shield him from that, it was ineveitable that he was bound to be subjected to at least some of the tension. After any of these episodes or conversations with the in-laws, Eli would be upset for days...he would not sleep at night at all, he would truly affected him. Trying to talk to my in-laws about how sensitive he was was useless...they thought we were just berating them and overly sensitive first time parents. Little did any of us know the real reason for all of his sensitivity issues...

We noticed when he started crawling, he only crawled backward. We thought it was funny and cute, how he would back himself into a corner and cry then we would have to pick him up and put him back in the center of the room so he could crawl back to the wall again. Our pediatrician never mentioned that this was a sign of autism, and we never would have guessed it. To us, it was a cut quirk. He was crawling, so that was all that mattered...right?

The next thing to come was the walking which came right on time, but he was so delayed in his speech. We were told not to worry...he is the first child so it can take a while...all kids are different...blah blah blah. I tried so hard to reassure myself that he was just doing things on his own timetable, but that he was perfectly healthy. He was happy and playful and loving and he loved people. He never met a stranger back then. The most obvious thing to us at that time was his lack of simple, single words. He never really said a lot of the babble and baby words...he went basically from not speaking, to speaking in full sentences. He had never said milk or cup or eat or anything like that, but when he asked me "can I have milk Momma" the first time I about passed out... Once again we were told that each child learns on his own timetable, and at least he was talking. There was nothing to worry about...

At this time, Norman was deployed so I put Eli into a home daycare with my friend Amy - just once a week so that I could have a break. She was absolutely wonderful with him and loved him as if he were her own, and she and I became good friends. He really seemed to adjust well and play well with the kids. No sign of anything, and he was adorable as ever, happy as ever, and seemed normal as ever.

Being 2 came and went pretty uneventfully. He didn't have the "terrible 2's" and I was hoping that we'd just skipped that ugly little part of toddlerhood. But we didn't, and it appeared to come along as "horrible 3's". That is what we passed it off as, and dealt with it by doing what you are "supposed" to do. Be consistent, use time-outs, yes - we are a supporter of spanking so we did that, and losing privileges/toys, etc. NOTHING WORKED. NOTHING. If you took his favorite toy, he just detached from it and found a new favorite toy. Once when we had taken ALL his toys out of his room, he had so much fun counting cars that were driving by on the highway he could see from his window, he didn't even miss that he'd lost everything. Nothing phased him. So we were frustrated because we didn't know how on earth to get through to him. At this point, we just figured he took after me, and was STUBBORN as a mule. We were told to chalk it up to being a little boy, and told not to worry - he would outgrow it.

Now, I have to go back and address the food issue. Eli started out in life loving a variety of foods. Mexican food especially, but he would eat anything and everything. He seriously was NOT a picky eater, and we felt so extremely blessed. How lucky we were to have a good eater!!

Well, I would say that around the age of 3 and a half things started to change. And it happened so subtly, that I can't begin to list what happened when. It seemed the quirks he started to have were creeping in slowly that we didn't realize the entirety of it all. He started to be very possessive of things. And not even his things...EVERYONE ELSE'S things. He didn't understand that some things belonged to other people. Something so simple to me, yet he didn't get it. His tantrums were getting worse...and the bad part about it was that they occurred over the dumbest stuff. I was sure that I was doing something wrong. My parenting skills must be lacking. So we went to the pediatrician. The pediatrician said she felt he was probably ADHD because he was always running...jumping...We could NEVER get him to sit still for any length of time. Church was a nightmare. Going to a movie, which we had once done successfully, was by this time impossible, and at home from the time he woke up in the morning to the time he went to bed he spent running and leaping over furniture and being a little rocket ball of energy. But other than her "guess" of ADHD, she was of no help. Just a note to anyone - pediatricians AREN'T ABLE TO HELP YOU IN WAYS OF PSYCHOLOGICAL, DEVELOPMENTAL, NEUROLOGICAL disorders. Don't depend on your ped's doc to help you when it comes to these matters.

Chase was born when Eli was about 3 and a half and he was such a good big brother. He loved Chase and was so good with him. There was no jealousy, and he was always piling toys on Chase whenever he was in his little swing or other toys. He loved to hold him and was very gentle. It was such a relief. We had been so worried how he would react to a new baby, but it was such a wonderful time. The problems started between the boys around the time Chase started crawling/walking. He would inevitably crawl over and grab something of Eli's, and that started to really irritate Eli. This would then make him rip whatever toy Chase had out of his hands, which would make Chase scream, and it was a vicious cycle. We figured it was a stage, and that eventually Eli would get old enough to understand that Chase was just a baby and we dealt with it as best we could. Unfortunately it wasn't just a phase, and it only would get worse.

Eli started getting angry. Very angry. Throwing things at us, throwing over the top tantrums... hitting, name it, he was doing it. It wasn't normal boy wasn't right. We knew - as we had known for a while - something was definitely wrong. But what were we supposed to do? Where were we supposed to go? Everyone was telling us we were crazy and Eli was just fine.

When Eli was 4, in August of 2007, I enrolled him in a private Christian pre-school. It was an actual school with an accredited curriculum and school setting with a set routine and was really structured. I felt that it would be good for him, because he is a smart little thing. He was needing more educationally than what I could give him, and I felt that with all the energy he had, he would be more productive there.

His first teacher was okay...very quiet and I didn't get a lot of feedback from her. She would send notes home with him in his backpack, but when I would try to talk to her I couldn't get much out of her. I tried to ask questions, but never got anything decent back in return. She frustrated me...terribly. I felt upset that I was spending a lot of money on his school and I couldn't get his teacher to communicate with me. Thankfully something happened that made her leave in the middle of the first semester, so we got a new teacher. This teacher was WONDERFUL. She and I communicated daily, and we tried everything we could to help make school work for him. We had so many issues...

* he would never color his own papers, but would run around and color on everyone elses during art time - this resulted in visiting the principal's office

* he would never sit still during story time while they sat in a circle...he preferred to run around the kids in the circle and jump over them...this resulted in visiting the principal's office

* He would take the other kids toys, never share his own, and declared that everything that was red was his - which meant he could take it without asking... the result was visiting the principal

* In gym he hogged the ball...he never let anyone else have the basketball during the games...This resulted in other kids tackling him and fighting ensued, which landed them all in the office

*When girls wouldn't get off the swings on the playground, he wouldn't wait...he'd throw rocks and dirt at them until they fell off and then he would climb over them to get on the swing. Result - principal's office

* He didn't believe any rule applied to him. EVER. He was in charge and the bossiest little kid ever.

So you get the drift. The funny thing is that he NEVER believed he was at fault. Even when he was throwing dirt and rocks at innocent children...he always felt provoked. I never understood that. I never understood why things bothered him to the point of him exploding in such a mean way. How can you get a child to understand that something is wrong, if they feel justified? Getting him to see that the other children weren't at fault was like trying to teach a monkey to knit. It just wasn't happening. So after one semester we pulled him out of the school. It just wasn't working. He was too disruptive, and I was getting to the point where going to pick him up nearly gave me a panic attack. I stopped going to the classroom to get him, and just made my regular stop to the principal's office. He was always waiting there for me with a big grin on his face, so happy to see me. So oblivious as to why he was there, and always trying to explain how justified he was.

We were so blessed to live in military housing at Wright-Patterson AFB in Dayton during this time. My dear, dear friend Leah has 3 precious little boys - Ashton, Preston, and Trenton. She knew that Eli had issues, but she saw the sweet heart he had. The boys played well together, but if they didn't, Leah never made me feel bad or treated Eli horribly. If something happened at her house, she'd walk him over to my house and let me know what he had done very cheerfully in a "I thought you'd like to know that Eli spit on Trenton" sort of way with a grin on her face, and then she'd ask if playdate was still on for the next day or if we were still on for our walking date that night. She was so wonderful during that time. And I have to mention my other friend Reina here. She helped us SO much with the boys, and she and her family were just PRECIOUS to us. We were so blessed to have such loving, Christian friends who were there with us through everything. got really long, so I will stop here for tonight. More later...