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...