Swimming Lessons & Overcoming Fears

Eli started swimming lessons on July 14th, and I think having the private lessons made all the difference. His teacher, Jen, was fabulous with him, and she went at his pace...verrrry slow. :)

The first day I have to admit I was skeptical, but with each lesson he got a bit more brave, and he tried more and more, and by the end he was actually swimming. He has come so far. Just a few months ago he cried in the bath when we would have to rinse his hair and face in the bath. And now he love swimming under water and diving down to pick up his diving sticks. I love taking him to the pool, and letting him just be so proud of himself. He KNOWS he has overcome a huge fear, and he is so proud of his accomplishment. It's truly unbelievable; I never thought I would see the day.

Here is a picture of him swimming under water...

We have our moments when I'm not sure we are really moving forward...but then we have these moments and I realize we are making huge leaps.

An overall progress report and new thoughts...

I decided to go back and re-read the blog, so I have done so over the past couple of days. All I know is that as I, read over the pre-Meridell stuff, I am so eternally grateful for his time there. It was so hard to send him, but the changes we've seen...they are nothing short of miraculous. I'm not saying it's always perfect, but nothing ever is. It's just so much better it's amazing.

The medication has helped him get over his fear of getting his face/head wet, so after many trips to the pool and him being so proud that he can dunk his head under the water (a huge triumph for him), I decided that he is finally ready for more swimming lessons. This time, private lessons without me in the pool. He is thrilled about this, and I am I think even more so. We start them Tuesday, and I am so anxious to see how he does.

I also have realized that my biggest struggle is letting people know...letting people in...and letting people help me with supportive words and encouragement. When I get it, it is such a lift to my spirit, yet I am stubborn and proud and don't want people to look at my baby like he is any different. And the thing is, since he's come home from Meridell, most, if not all people, wouldn't have a clue that he was anything different than a normal 5 year old kid. The mornings can be absolutely insane before the medication gets into his system...he is running and jumping and all over the place, but once he gets his medication...he's sweet and obedient...and my normal, sweet Eli.

We don't tell people...talk about his issues except to people close enough to us who watch him and would need to know of potential issues when we are away for an hour or two, or Sunday School teachers who might face an issue in the classroom. But all reports we've gotten back from everyone who has watched/taught him have been wonderful. He's making friends here in our neighborhood, he's obedient in class, he's kind to the other children...And to everyone else, he's just sweet, polite Eli. He says 'please' and 'thank-you'. He is considerate. And when he does have tantrums, he is much more obedient to go to time-out, hand toys over that he has lost priveledge of, and he can turn his behavior around and not let it ruin our whole day. We have made great progress.

And because of that...because of the strength I have found through my faith, family, and my friends...as well as the counselors and teachers at Meridell, I feel strong enough to open up this part of my life that I have tried to keep hidden for so long. The reason for that is because I realize I am NOT alone. There are so many families with this struggle. The latest statistic I read was that 87 children are diagnosed as being on the Autism spectrum each and every day. So maybe my moments of weakness and pain could serve as encouragement to someone who is facing the same exact thing - every single day. So as of today, Eli's blog will become an open blog. If anyone can find hope through our story, then I will have found a bit of peace in knowing that there IS a purpose for this. Our Heavenly Father created my Eli, and he is perfect in his own way. I suppose the biggest struggle I deal with is learning how to cope and best help my special, precious Eli. And never forget that he is a gift. Because on the difficult days it's so much easier to ask "Why Me?" , instead of asking "What should I do...What does he need?".

To understand our story, if you are new to this blog, you have to start at the beginning...the very first post. http://ourjourneytoeli.blogspot.com/2009/02/beginning-of-story.html?zx=7b835d739173b363
And to those of you who have been following...keep checking back. There is so much more in store for us... So with a deep breath...I now open up the blog...

Ice Age III

Today the Autism Society of America (ASA) hosted a national movie day for kids on the spectrum. They did a special showing of Ice Age III, and made some changes for the kids to make them more comfortable. They didn't turn all the lights off, they allowed families to bring their own snacks, and the biggest one is that they turned the volume down to a level that is more comfortable for the kids.

I can't speak for all autistic kids, but I know a lot of them, including Eli, have very sensitive hearing. Sounds that are normal for us like traffic or a car horn, although they may be a bit startling to us, totally are overwhelming for some spectrum kids. Eli used to walk around a lot of places with his hands over his ears until we would tell him it was okay to uncover his ears. And I noticed a little boy who came in with his dad today was covering his ears in anticipation of the loud sound.

The ASA hosts these AMC movies once a month, and our first time at one was just a great experience. We left the movie with Eli talking about how he liked the sound and the lights, and it just made a difference for him. It was a fantastic experience, and I look forward to the next one.

A day in the life...

Since Eli has been home there have been lots of ups and downs. We are learning what sets him off, because some of those things have changed since before he went to Meridell, and we are recognizing new obsessions (like he always wants to be on the left, always wants the item on the left, the cup on the left, the chair on the left, etc.). There are moments I feel like I am in that drowning mode again, but we are right on the brink of some HUGE positive life changes for him...and us...so I need to be patient and trust that God will take care of us as only He can.

Life is not perfect. The medication is what has made the biggest difference in Eli's ability to cope with his obsessions and fears and anxiety...but even with a daily medication routine that looks like this...

There is no complete "fix". And every time I look at this I am reminded at how "anti-medication" I am and I have to laugh. Sometimes we are taught lessons that we never feel we need to learn. With that said though, this doesn't help with one major area that is a constant struggle in our household. Short term memory. Eli flat out doesn't have it. Period. He will do something and not know why. You will tell him something and 2 seconds later he has completely forgotten. Seriously.

For example, he KNOWS he has to wash his hands after he goes to the bathroom. He would come out and I would ask him if he washed his hands and he was like "OH MY GOSH I FORGOT!" And he'd go back in and wash them. It wasn't like he was trying to NOT do it...he just couldn't remember TO do it. But he is extremely visual...so we have started putting up signs. They have made a HUGE difference. I can't tell you how much this has helped to improve his cleanliness habits and my stress level with having to remind him to do the simplest tasks. So here are some of my signs...

This one is taped right on the mirror just behind the sink at his eye level, so he is reminded to wash his hands. I even traced HIS hands on the paper to make it more connected to him.

The next sign, I can't believe I'm going to share it with you, but it works, so I'm going to post it. I have had to make a rule that when he potties, he has to sit down. If the child tries to pee standing up, he gets bored and doesn't aim at all...so there is a mess for me to clean up every time. So he has to sit. BUT even when he sits, he still gets bored and sidetracked, and doesn't always aim. The last time he didn't aim we ended up with pee in places I didn't know pee could reach...so thus the need for this sign.
Another issue we had was him jumping on the bed. No matter how many times I told him not to, he would do it as soon as I left the room. But since the other signs had worked, I decided to try this one, and it worked! As soon as I put it up, I walked out of the room and waited by the door to see if I would hear the boys climbing up on the bed to jump. I heard Chase crawling up, but then I heard Eli say, "Chase, look at the sign! It says don't jump, so we can't jump on the bed okay?" I was SHOCKED. SHOCKED beyond what I can express. He is such a visual creature...he just needs reminders.

I also made a couple of stop signs that are placed around the house. One is nailed up right by his lightswitch in his bedroom to remind him to stop and check his attitude before he leaves his room and comes out to interact with the rest of the family. This one is still a work in progress, but I think with consistency it will work as well as the others. And the last one is a small hand with STOP written on the handle. I carry that one in my purse or bag, and if he starts acting crazy I just pull that out. It works better than me yelling or trying to get thru to him with words. Seeing things is what gets thru to him, so we are learning to adjust to what works for him, instead of forcing him to do what "should" work for everyone else.

And last but not least, eating is another issue. Hopefully with his therapy this will get better. I'm not sure if it's texture, or smell or whatever other aversion it is, but he is so very picky. We have started this chart, and the deal is that for every dinner time meal he eats without fighting us and actually eating it all, he earns a sticker. Every time he gets 7 stickers, he can decide what dinner will be for one night. If it's cereal, then that's what we'll have. If he wants a peanut butter sandwich, then that's what we'll get. But then he has to start over and earn another 7 stickers by eating 7 meals well. He loves stickers and charts like this, so it is a great incentive for him.
So that's all for now...It's late and I need to get to bed. I'll update with more behavior issues soon. I hope you all are having a great week...

Stace

Bump in the road...

Well, where to start - it wasn't smart for me to not have been updating this more frequently...I need to keep up with it better for records sake.

Eli has been doing great overall...but there are some things that came to a boiling point with me yesterday, which made yesterday a crappy day. Basically the biggest help with him is the fact that he is able to "turn it around" as he says, much more easily. He is so much better about once he is disciplined or redirected, he is able to do what you ask and behave better. The biggest problems that we are having are:

*Eating - he is still verrrrrry picky, and he flat out has to be coached through every meal unless it is one of a couple things he will eat on his own. It is tiresome, and very frustrating. This along with some of his other texture issues makes me believe that Jonni is right on in her suggestion of finding an OT for him.

*He is very forgetful. We have have been repeating the rules and the goals each day, but even the reminders we have up for him weren't enough.

*When he gets overstimulated or mad at someone, he pees on the floor in the bathroom on purpose. He does it to aggravate the person he is mad at, and to give them a mess they have to clean up.

These are the biggest issues we have.

The biggest issue I have is realizing that I cannot turn my back to go to the bathroom or do anything in a different room. It seems as if I step out of the room, all hell breaks loose, but as long as I am in the room with my watchful eye then things are just fine. So it is a struggle with me to find it within myself to be tuned in to them constantly. We all need a break to go potty...even if it's only a 5 minute break every couple of hours...but learning to do without that is taking some work on my end. Oh, and a big thing with me is germs. When we do have a mess on the bathroom floor, I go in fully armed to clean it up without me having to actually touch it. After talking to his doctor at Meridell yesterday evening, it is now clear to me that if he does it again, HE will have to be the one to clean it up. This practically makes me have an anxiety attack, because I can see him just touching the pee and getting it all over himself in an attempt to clean it up. But that is what a bath is for, so he will just have to clean it up, and I have to let him. I can disinfect him in the bath afterward, but he has got to learn that his behaviors have consequences...Consequences HE will have to deal with.

Yesterday it seemed like all of these things just happened all together and I had a minor breakdown. The pee in the floor was the straw that broke this camel's back, and I reached my breaking point.

But we now have more posters up. One poster I made that has "Potty Etiquette" and it is posted right at eye level while he is on the potty. It has a picture of a toilet (my artwork sucks, but it works) and a little boy sitting on it, and aiming, and then wiping. Yes, I cannot believe I had to make THAT kind of a poster, but you do what you gotta do. The next poster I made has hands plus a soap bottle with bubbles plus water and it says WASH HANDS. That is taped on the mirror at eye level just above the sink. And then one more bathroom chart I made has space for a sticker for every time he successfully does all of his bathroom etiquette. Once he has 25 stickers, he will earn a reward, so this gives him some incentive to NOT make a mess. So far so good, and he has been enthusiastically perfect on his bathroom "skills".

Next we need to make a poster to put right at the head of his bed that says NO JUMPING. This is something that he always gets hurt doing (landing on an ankle wrong, etc), but he continues to do it. I need to figure out something more creative to get him to stop jumping, but that is next on the list. Right now we just need to focus on the eating and the bathroom stuff.

I need to wind this up. Sheesh, no wonder I don't have a lot of time to blog. Since I've started writing this post, I have swept the balcony (The boys were playing in the sandbox), vacuumed the kitchen and living room (because they decided to track a lot of the sand in), had them both take a bath, unwind to a bit of tv, and now they are in their rooms - Chase is napping and Eli is watching the Suite Life on Disney. It is sooooo nice and quiet.

But I will end on Eli's strong points so that the positives aren't forgotten. He has definitely made progress, and it IS apparent... no matter how much of a struggle some things might still be...

*He has a happier attitude
*He takes redirection much better
*He can calm down and listen to me
*He does look me in the eye, although sometimes it takes me telling him to do it
*He is very polite...using yes ma'am and no ma'am and please and thank you regularly
*He is MUCH better with Chase. Like night and day better. Now they only get into trouble for playing too rough, but it is a mutual thing...
*He is sharing a lot better than before...

And that is where I will stop. It is 11:15 and I need a shower, so I better hop to it while they are resting. That won't last long...

I have GOT to post more frequently so the posts won't be this long...I have to for my sanity! :)

Stace

Homecoming!!!

Eli was discharged from Meridell on May 15, 2009. We had one last appointment with his therapist, went over notes and some helpful things to help with the transition home, then went to his classroom to pick him up. I had held it in, but when we walked into his classroom and his teacher called for him to tell him it was time to go, I just burst into tears. It was so emotional. His classmates were hugging him telling him goodbye, and his teachers were saying how much they enjoyed him and that they didn't want to let him go. He has come so far...

We now have a brand new beginning, and now we can start anew...not only with him and all of the positive changes, but in a new home, new environment, new start all together. Here are a few pictures I took that afternoon...

Eli with his therapist Micki...she has been an absolutel Godsend, and we have come to cherish her...

Eli with his "Pathway Home" chart. He has been working hard trying to earn greens to put on his chart. Each green got him one step closer to his goal of coming home to be with us!!!!

This picture was so symbolic for me. When I brought Eli to Meridell on February 3rd, it was winter. All the trees were bare, and they were dead and lifeless. That was so much like my heart during that time. But as we were leaving everything was blooming and beautiful, and full of promise and life. I know there will be hard times, and perhaps he will have to even go back there someday for a meds update...but we will be okay. We are going to be okay.

This isn't the end of this blog...I'm sure as much as this has felt like an entire lifetime to us, it is just the beginning...

Overnight Visit with Eli - 4/24/09

First off, the technical stuff ;)

Medications currently on (and the combination that has worked miracles for my sweet boy...)

*Amantadine - 100 mg at 8am and 2pm

*Concerta - 36 mg at 8am

*Tegretol - 400 mg at 8am and 8pm

*Seroquel - 50 mg at 8am

*Seroquel - 100 mg at 8pm

*Benadryl - 25 mg at 8pm

Now, I know you are probably falling out of your chair saying holy cow that is a lot of medicine! But you have to understand the battle Eli's little body is dealing with daily to understand the reasons for treating him with the meds he's on.

His diagnosis is officially PDD - NOS (Pervasive Developmental Disorder, Not Otherwise Specified) which just means that he's on the Autism Spectrum. Also, he has ADHD and ODD, Oppositional Defiant Disorder. Kids who are ADHD and ODD cannot take a stimulant, usually... It's just too much for their bodies to handle, and it makes everything worse...the aggression gets worse, the anger...frustration. BUT for Autistic kids, many of them have to have the stimulant to give them the ability to focus, pay attention, learn from their therapy or school, and/or just participate in life. For Eli it makes the difference in him sitting by himself (not on it) or wanting to be around kids and other people (when he's on it). So it's a catch 22...you give him the stimulant and even though he wants to be with other kids, he can't really handle being around them. So that is where the other meds besides the Concerta come in. The Amantadine is an anticonvulsant that actually relaxes the body and the nervous system so it doesn't get so wound up. The Seroquel and Tegretol are mood stabilizers, so that it helps calm the "crazy energy" side effects of the Concerta, and it makes the Concerta actually do some good for him and he gets real benefits from the combination.

Out of approximately 17 different meds...different combinations, different dosages...FINALLY he was in a place that they slowly got him off of what DIDN'T work, and he is on something that does.

He is a completely different child. Today has been WONDERFUL. During the meeting, the report was that he has had many more greens and yellows, and although the reds are there, they aren't for hitting or pushing so much. So YAY! We then left there with the go ahead for the weekend pass, and headed directly for Chili's. He ate a great lunch, then we went to the Austin Children's Museum. It was a great museum, and we had a great time exploring it. I was so proud of him...when a little boy came and took a truck away from Eli, he just said, "Okay, he can have it" and then he found other things!!! I was SO PROUD of him!!! And a grandmother even came up to me and told me how well behaved he was, and how she believes that children don't behave as well as him these days!!!! (That was because at story time, when the guy was done reading books, he offered stickers to all the kids. The oldest boys like TRAMPLED the little kids and were pushing and shoving to be first, and Eli just sat in his chair and said he'd wait until they were all done getting theirs to get his!!!) If that lady only knew what a glorious moment that was for me...I got so choked up I just thanked her like 4 times and that's all I could say. I don't think I'll ever forget how proud of him I was at that moment. It was like "It's gonna be okay. We're gonna be okay. This was worth it...it was what he needed." It was a much needed feeling for me...I KNOW we've done the right thing, but sometimes it doesn't feel that way. And the constant questioning from other people of "How can you leave a 5 year old alone like that" doesn't make me feel fabulous. But it has been what we needed...And today was proof of that.

Now, I will state 100% EMPHATICALLY that we are in no way out of the woods. This will be a constant fight, and the medications will need to be updated as he grows and his body chemistry changes. But for this moment we are surviving...and we are happy...and we are doing everything that we can for our precious little Eli.

So from the museum we went to Target to get him a toothbrush and some soap that won't burn his eyes (he is seriously scared of soap burning his eyes...to the point of crying if he thinks he has to get his face wet in the bath). Then we went to get his hair cut, and he did great! Then we grabbed dinner at Sonic and brought it back to the hotel to eat while we watched Disney channel and some cartoons on Nick. He had the best time getting to take a bath (he only takes showers at Meridell), and we made boats for him to play with out of cups and lids and straws :). Then I scrubbed him till he was pink, scrubbed his feet with some exfoliator stuff, clipped his nails, and conditioned his hair, moisturized him, and now we both feel a million percent better. I am not sure if it's just me, but I'm not sure how well he is washing up, and I know he's not getting his ears and face very well. Do most 5 year olds bathe themselves? I just don't think that a 5 year old could be that thorough... So at least he's clean tonight. Oh...and I scrubbed his teeth for 3 minutes solid!! :)

He is now watching Phinneas and Pherb, and rubbing his eyes looking really tired.

I am thinking we will get up in the morning, get out of here in time for lunch, and then go find a movie either at an IMAX or at a close theater and do that before I take him back to Meridell. He doesn't have to be back until 6:30, but with all the extra plane tickets we've had to buy, plus the fact that we are MOVING in a week and a half (just to base housing at Fort Belvoir in DC), we just need to save all the money we can; and every extra hundred bucks helps.

Alrighty, well I'm gonna wind this post up and leave you with just a couple pictures that I snapped today/tonight. Thank you for reading and for checking in on us...

Chase's Development & Progress

I am going to throw this post in Eli's blog, just because I don't feel comfortable putting it on the main blog, and I need to keep track of this. We have become aware of a couple strange behaviors/abilities so I needed to just jot them down in case it became important in the future. I hope to the Lord above that I am making a note of this for NO necessary reason, but I'm gun shy now...and I just would rather be safe than sorry.

*Jan-Feb timeframe Chase started lining things up certain ways. He does not get upset if you take a car out of the "lineup" or if you switch it to face it another way like Eli did when he was that age.

* April 13th, Chase started bringing me fridge alphabet letters one at a time and was getting them right. At the age of 2. He should not know these because we didn't teach them to him. We've pointed them out to him when reading books and stuff, but not spent time WORKING with him on these enough for him to know so many of them. So we'll keep an eye on his development and progress.

-I will update this particular blog post with all of Chase's info so it doesn't get mixed up in Eli's stuff.

Telephone Conference Visits

I brought Chase home to DC on April 1st, and we are so happy to be home. Chase has been such a daddy's boy since he got home, and it's just been wonderful to be home and to have things as normal as possible. We've done conference calls on Friday April 3rd, Friday April 10th, and then today, April 14th. The biggest change that has been made is that they have completely taken him off of Lithium, and so far he's not had any noticable signs that he stopped taking it. (YAY FOR THAT!) I was terrified honestly when they said they were taking him off of it, but it doesn't seem to be a bad move...yet. We'll just keep an eye on it.

As far as the 3rd, there were no major issues to report - just the usual of how's school, how is he outside of school (he always has more trouble outside of the structure of school), and what are the dosages he's on currently. Nothing major to report.

The conference on the 10th was the same way. It was kind of a funny situation though, because I had taken Chase to a museum to play in the kiddie building land, and the metro got stuck in some kind of mess on the way home so I knew I wasn't going to make it home in time for the call. We had to just get out of the underground metro station to get up to ground level so my phone would get service, so that at least I wouldn't be a no-show. Well, so I exited at the Navy Memorial/Archives exit, and found this little archway to a hotel that I could park Chase's stroller in and we could sit in out of the wind. So I got the call from the therapist, and then got linked up on the conference call with the home psychiatrist, and then it became obvious that we had some company where we were sitting. This guy was seriously smoking something and trying to light a little plant on fire!!! So that was odd... Then I got asked to not loiter! That was a first! But other than that all was well with Eli and it was another "he's doing okay, still having some reds and aggression, but overall he's still doing better". I honestly expect some reds...I mean ALL kids have aggression - even NORMAL ones! :) So I don't equate aggression with autism necessarily...just when it is over the top, out of control aggression.

Then again the same thing today on the 14th. The most significant thing that happened today was that I got my flights booked to fly out to OK/TX and got the hotel booked, and everything is set up for our visit back out there. Poor Chase...I have many friends who have never flown and that poor child has so many frequent flyer miles...I wish I had kept better track of all his flight miles. I cannot believe it will have been 27 days since I have seen Eli when I get to see him next Friday. I didn't know if I would be able to survive it...if Eli could survive it...but we have. And I am proud of both of us. :) My sweet big boy...he is so much stronger than I even could have imagined. I'm so proud of him.

And the HOPE is that we can have our overnight visit this coming Friday. The plan was to go to Seaworld in San Antonio, but his developmental team really didn't think that was a good idea until he was discharged...so I will be coming up with an alternate plan.

Okay, I might make some changes to this post tomorrow...Norman is waiting on me to start watching a movie, so I better wind this up. Thank you all so much for keeping up with us. Knowing that I have people out there who care about us make this bearable on days when I don't think I can keep going. Thank you thank you thank you...from the bottom of my heart. You bless my life more than you know...

Meridell Meeting March 27th

This meeting was especially difficult and emotional for me because I made the decision to fly back to DC with Chase on April 1st. It meant that this would be the last "in-person" visit for a month, and that was a hard pill for me to swallow. Somehow I had equated in my mind that my going home meant abandoning Eli, but I came to grips with it enough to know that I had to go home for Chase's and my sake...and Norman's too. We missed each other...we missed our normal. But I wasn't sure how I could look Eli in the face and answer when he asked when I would be visiting next.

Mom and Chase came with me, and we drove down on the 26th. We stayed in Georgetown, and had a nice time traveling together - talking and eating yummy comfort foods. My meeting with the therapist was at 10 am on Friday morning, and that went well.

Unfortunately Eli had gotten too many reds to get a day pass, and although they were willing to let him go out for the day with us, when I asked their opinion they felt that it would be sending him the wrong message. He KNOWS that he has to get greens and yellows to earn a day pass, and he's had just too many reds. So I agreed, and we decided that consistency is more important at this point than a fun day on the town...so we stayed on campus.

Eli and Chase were overjoyed to see each other. I've never seen Chase light up so much and he kept shrieking 'Eli, Eli, Eli!!!" and smiling and hugging on him.

A couple of AWESOME Eli moments were...

* They had a cookout for the children's unit. We went to eat at this large pavillion with lots of different colored benches, and of course Eli headed straight toward a red bench. But mom and I went to a yellow bench and suggested we sit at the pretty yellow bench and he started to protest, but my sweet baby actually STOPPED...THOUGHT...and then said OKAY! :) No tantrum. No crying. No flinging bodies on the floor. I was so proud of him.

*They let the kids have a coke because it was a special day/event. I still don't like him to have cokes (I know...mean mommy, but a 5 year old does NOT need cokes!), so I struck up a deal with him. If he drank one of the small bottles of water, I would THEN let him have his coke... Once again he protested at first, but then cheerfully agreed!!! Proud moment number 2!

*We noticed throughout the day as the boys were running and playing that Eli did his very best to run AROUND Chase. Like if they were running TO someplace, he would go around him so he wouldn't knock him down. Normally Eli would make a beeline straight for Chase, run him down or push him down and seriously trample him. But he was helpful, loving, kind, and didn't do any of the aggressive behavior like the shoving, running over, etc. That happened all afternoon, and mom and I were so happy to see that.

************

Now there wasn't too much info to gain from the meeting...they had decided to take him off the Lithium, so we were at a wait and see point. With all the reds he had the previous week and a half, they were tweaking some on the doses/medication types, and it was more of just a "here's what we're doing" type meeting.

One of Eli's new little friends had his family visiting also, and that worked out nicely. The boys played together on the playground, and mom and I chatted with that boys parents. I had happened to say to Eli that we were excited because we finally were notified that our number had come up for housing on Fort Belvoir, and that's when we found out that the other family was an Army family! So we discussed military insurance, the different programs and issues we faced dealing with Tricare, and just the different posts. The husband/father in that family is now in Iraq, and my heart goes out to that family. Not only does the wife have to deal with a child in Meridell (and they live in Colorado Springs), but she has a deployed husband in a war zone, and a daughter who was so sweet that she had to keep things relatively "normal" for.

It was a very good visit, but it was terribly hard to leave. We left Eli on the playground with his class, but as we were leaving, Chase ran up to the fence (fenced in playground) and Eli and Chase clasped hands through the fence and both just cried and cried and held on to each others hands. It was such a hard thing to witness...one of the most difficult things I've ever seen. To separate brothers who love each other...and miss each other terribly...was awful. Chase cried for a while after I took his hand and led him away. That was just so hard; it still makes me weepy to think back on it. I will never, ever forget that moment.

Here are some pictures of that visit...I cherish that day so much...

Meeting/Visit March 18th

Due to Spring Break being this week, I had to have my meeting on a Wednesday because the therapist was going out of town. So that meant home to Oklahoma on Saturday, and then packing up to go again on Tuesday. I think my parents car knows the way to the hotel by memory now.

After our visit to the caverns, Eli seemed to get more homesick, and for the first time he got really emotional during a phone conversation shortly before I went to church on Sunday the 15th. That made for a hard evening, and I was very confused as to how much longer he would be able to stay down there, by himself in that sad state. I was comforted when I talked to Norman later and found out that when he talked to Eli a couple of hours after I had spoken with him, he was in much better spirits.

The cause in the change of emotions...or frankly, the appearance of emotion which had been pretty absent for a while is due to some medication changes and Meridell's good work. They found from all the testing that his issue is seemingly a frontal lobe problem. So they have him on a medication (I'm sorry, I can't remember the name of it right now! I'll fill this in later when I do!! lol) that addresses frontal lobe problems, and it is seeming to make things "connect" a bit better. So he is finally able to express himself better, feel things a bit more, etc. Which (don't get me wrong) is GOOD, but it makes it so hard to hear your baby cry and want to come home, and you know that he can't.

Now for some reason he has had a tougher time the past week with his aggression, and has been getting more reds than greens lately. His therapist thinks that it is because he doesn't see a light at the end of the Meridell tunnel, and so at our visit on the 18th, we set up a timeline. Not only did they feel it was time to start his "Going home chart" but they felt it was also necessary to have him see that he was working on specific goals now.

So this first goal is that he has to earn another day pass for our upcoming visit on March 27th. For each green he gets, he earns 30 minutes of off campus time. For each yellow he earns 15 minutes, and of course for red, he doesn't get any time. We introduced this to him like he was one of the Little Einsteins and that this was his mission. And to sweeten the deal a bit, my mom and dad are coming down for this visit, as well as Chase - who he is dying to see.

I am a bit worried about it, because he called today telling me that he had gotten reds twice today, and so we had a little pep talk about his mission and about our visit. He seemed down, but hopefully he can turn things around; at least he has a week.

So that is that. And after much debate and discussion, I have finally decided to head home to DC. Chase's and my flights are booked for April 1st, so this next weekend is my last in person visit for a while. I'm not sure how I will explain to Eli that I won't be down the next weekend, but I'll have to figure something out. He doesn't have a good concept of time, but he's smart enough to know if I say it'll be a month then that isn't good.

The GOOD news, is that my next in person appointment after the 27th is scheduled for April 24th, and that entire month they will be working on specific behaviors and improvements on that and coping skills, etc. IF he can make good progress then we are looking at him getting to earn a weekend pass that weekend of the 24th. So that would be wonderful!!! I've promised him that on his overnight visit we would go to San Antonio to Sea World, so that is a big incentive for him.

So we shall see. I'm anxious to have our next meeting...see what they are witnessing and what they have to say. They keep me going, and I'm so lucky to be able to be going in person to so many of them. That's all for now...all I can say is to just keep praying. So far so good...

Meetings March 6th and 13th

Following the visit Norman and I had on 2-27, I flew home with Norman to DC on Saturday the 28th. The appointment on March 6th was a conference call, so Norman and I went to Eli's home psychiatrist and we called Meridell and did our meeting that way. It was the most uneventful meeting we have had...at that point they were still working on getting his testing done, but the biggest news from that call was that he had gone 6 days in a row WITH NO REDS! That was phenominal, and still has been the longest stretch he has gone being that good.

I flew back from DC on Thursday the 12th, and had an in-person meeting/visit on Friday the 13th. Because of his good behavior, he earned a day pass, which means that we were able to spend the day off of Meridell's campus and do something together. We chose to go to InnerSpace Caverns up in Georgetown (just north of Austin), and we had the BEST TIME! It is such a neat place, and it is a really big cave! We got to see lots of itty bitty bats, and Eli had a fun time. He behaved very well, and was able to really keep on track when it seemed that he might go a little off course. We ended up in Target so that I could get him some more toothbrushes/toothpaste, socks, etc, and of course there were those toys and items that he wanted, but I said no. I explained that I bought him a souvenir from the caves, and he did start to whine and protest, but then corrected himself and said, "Okay mommy, I'll do the right thing. Maybe next time". I was SOOOO proud of him! He seems so grown up. *sometimes* :)

We did get the results of the testing back on that day - earlier on during the meeting. The tests they performed were...

*Wechsler Nonverbal Scale of Ability
*Wide Range Assessment of Memory and Learning - Second Edition
*Wechsler Individual Achievement Test - Second Edition
*Delis-Kaplan Executive Functions System, Verbal Fluency, Design Fluency
*Trail Making 1-5
*Index Finger Tapping, Lateral Dominance, Grooved Pegboard
*The Berry-Buktenica Developmental Test of Visual-Motor Integration
*Oral and Written Language Scales
*The SNAP-IV Teacher and Parent Rating Scale

He scored either in the average ranges or high ranges for his same age and grade peers, but what is confusing is that during testing he was not paying attention. He was all over the place, because this was before they had him on the medications he is on now. He was in and out of his seat, focused on other things going on in the room, and they had a hard time getting him to focus. We are all left wondering what the "true" scores would be if he had been paying attention, but needless to say we are happy that he isn't experiencing huge delays in most major areas. The problems that they do report are as follows (I'm taking the paragraph from the report).

Testing suggests significant problems with recalling verbal information without cuing and moderately impaired visual working memory. Visual attention functioning was also quite variable and mildly impaired on one measure.

About his language, they did say this...

Eli's spontaneous expressive language was generally fluent and free from paraphasic errors. His articulation and pragmatics appeared grossly intact. There was a significant difference between his receptive and expressive language scores, indicating that Eli performed better on receptive language tasks than on expressive language tasks.

And about his behavior during one of the interview sessions...

He was extremely fidgety throughout the interview, and eye contact was rare and fleeting. Eli's receptive and expressive language functioning appeared grossly intact. His thought process appeared logical and goal oriented.

During the testing period, his medications were as follows:
*Lithium - 150 mg 3x per day
*Concerta - 18 mg 2x per day
*Seroquel - 25 mg 2x per day and 100 mg at bedtime
*Depakote - 125 mg 2x per day

Sometime after the testing period, they took him completely off Depakote and added in two new meds. They have been lowering the Seroquel (I believe with the intent of doing away with it eventually).

So that is enough on those meetings and visits. More to come soon...

Thank you

I just wanted to say thank you to each of you for your comments, prayers, emails, phone calls and cards. I'm sorry I'm so horrible about commenting you back in a timely manner...please know that each comment is so special, and each one of you is appreciated more than you know.

Our visit yesterday went so wonderfully well. I will be posting an in-depth update very soon...I'll try hard to do it tomorrow. We finally got some "real" answers and some results of some of the testing, so for the first time in all of this journey we are moving forward, and I truly feel that way. We still have a long way to go, but Eli has made leaps and bounds...and I will blog about it very soon. I just wanted to let you all know how thankful I am for you...
XOXO

Point Store

I've been meaning to write this post for awhile and the time just keeps getting away from me. But I'm inbetween emails and calls from Meridell and Virginia's school program called Child Find that helps place him in the right school for next fall, so I thought I'd do it since Eli's on my brain.

At Meridell they have this incentive for the kids called Point Store.

Each day is broken down into segments - basically it boils down to a morning timeframe, afternoon, and then evening timeframe. They get points based on their behavior for each segment of the day, and the scale is a color based system.
Green - great behavior - 5 points
Green - good behavior - 4 points
Yellow - pretty good with some testy moments - 3 points
Yellow - okay, but not great - 2 points
Red - Not good 1 point

Each Friday they tally up the points and let the kids pick out an item from their "store" which is a room with cases and cases of "stuff". Toys, nice bath stuff, games, presents for parents, school supplies, pillows, blankets...all kinds of stuff. They have some NICE stuff!

You can either spend your points, or roll them over to the next week and save them up to get bigger prizes. It's kind of like at Chuck E. Cheese where the more points you have, the nicer toy you get, so same thing at Meridell.

Before this new medication, Emantadine, he was getting Reds and Yellows. But it's nuts...as soon as they put him on Emantadine, he has gotten all greens. Seriously...ALL GREENS! Go Eli! Now, we're not sure if it is a fluke and he's just being good, or if it truly is that the medicine is really helping him be able to control his emotions. Only time will tell I guess.

So far so good though, and hopefully he will earn his day pass on Friday so that we can go off campus! :) Alright...back to the phone and email for me... :)

Quick Update

They added a new drug on Thursday...Emantadine...and it seems to have made a big difference!!! He's gone from reds (tantrum behavior) to greens (great behavior)! He even earned reward time of playing on a playstation tonight! :) So since he's been there they've added Tegretol and Emantadine, and he's still on Concerta, Seroquel and a smaller amount of Lithium. Maybe the Emantadine is our "miracle" we've been waiting for. Only time will tell. He seemed so happy with himself to have been behaving, and we found out yesterday that if Eli can keep up the good behavior until my visit with him on Friday, that I can take him out away from the campus to go to a cavern they have in Austin or go do something with him away from there! :) Yippeee!!! I hope he can earn his day pass for us to have some time together.

I'll keep you posted...

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.

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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.

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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 hard..it was so good to watch Norman and Eli chasing each other and playing on the playground...it 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 not...so he follows the impulse. That's why he's there...so 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...

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, though...how 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...

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 improvement...at 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.
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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 different...it 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))

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...

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...

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!!!

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! :)

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 about...one 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 place...it'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. Okay...so 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 much...you are so dear. Please keep praying for us... Thank you.

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 insurance...it 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 swimming...as 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.