The Conversations Continue

I am so loving conversing with Otto!  I love getting to know him through how he's interpretting the world around him.  The other day we were laying in bed after nap again and had 2 amazing (to me anyway) conversations....

The 1st one.....

Otto said, "Be-" (short e sound).  I said, "what?" And he repeated himself.  I said, "bed" He said, "no."  I said, "bear?"  He said, "no."  I said, "I don't know what you're saying."  He's very good at charades or whatever it takes to help me figure it out.  He said, "coo-coo monti" (which means Cookie Monster). 

I said, "oh Ben?"  He said, "yeh!"  To remind you, if you've read about our tragedy here lately, Ben "Cookie Monster" died.  For Otto to bring him up out of the blue like that is very strange.  I'm sure he's heard us and everyone around here talking about stuff but I still think it's weird!

Anyway, I said, "what about him?"  He said, "where is he?"  Now, I'm telling you, this was SO odd for Otto to be asking about Ben in the first place and then to be asking about his whereabouts was very strange!!!!  I said, "he's up in heaven with Jesus."  He said, "why?"  I said, "b/c Jesus said 'come on Ben it's time to come be with me!' And Ben said 'OK!'"  Otto said, "oh"  And that was that.  I decided since that went so well, I'd add that Andrea was with Jesus now too.  He remembered when she came over and played in the puddles with them b/c he said something about that time implying "is that who you're talking about?"  I said, "yes, Andrea, she played in the puddles with you."  He said, "oh" And the conversation was over!  I laid there in disbelief that I just had a conversation about death with him.

The 2nd one...

A few moments later from that last conversation, still while we're laying there on the bed, Otto is observing the photos of he and Owen on the shelves on the wall.  He points out "Otto baby, Owen baby"  Then he asks, "what mama doing me baby"  (which means what were you doing when I was a baby?)  I said, "I was praying for you."  He said, "where?"  I said, "at home"  He said, "oh."  

Then he asked, "what mama doing OE baby?"  (which

 means what were you doing when Owen was a baby?)  I said, "I was taking care of him."  Then it came.....the 1st real question trying to understand adoption.  I was dying!!!!!  He said, "why mama no care me baby?"  (which means why mama didn't take care of me when I was a baby?)  I very matter of factly said, "B/c Yohana was taking care of you when you were a baby."  He said, "oh."  And that was that. (Yohana was his foster mom in Guatemala.  And he knows that from his Lifebook. We talk about it when we look through his book.)  Thankfully he was satisfied with that and that was the end of the conversation b/c I was dying inside!  I couldn't believe we just had that conversation!!!!  Lord, give me the wisdom to know exactly WHAT to say and HOW MUCH to say whenever the questions arise.

What a glorious afternoon of laying on the bed talking with my son waiting for other one to wake up.  I was blown away by the connections he's making and what's going on in that little noggin of his!

Let me introduce...

Otto has been doing so great! These latest medicines (there’s 2 of them) have not shown any side effects and have revealed to me a child I have not seen in a while and in some respects....EVER!!!!! Remember, this was our 4th try of medicine. We went to see a child psychiatrist and she prescribed these 2 new ones. I prayed and said, “God, if you don’t want Otto to be on meds then please let side effects flare up and I’ll be done, no more tries! But if it’s ok for him to be on meds then please let these ones work and give us some relief! Let us have our boy back!”
I can not even begin to describe how great things have been! He’s been more calm which is a huge plus! But he’s also seemed more mature. With the calmness, he also has become quite the conversationalist! He and I have been having some great conversations! It has been so amazing! He has such a great memory! He reminded me recently of something I did with him when I rocked him in Guatemala. I feel like I’m getting to know my son in a whole new way! God has given me a precious gift and I’m so thankful!
And we had our 1st spiritual conversation which threw me for a total loop! Otto loves to pray and does so on his own often but he has never asked me a question about God. We were laying on my bed looking out the window and it was windy. I said, “It’s windy outside today.” He said, “Why is it windy?” Rather than explain the logistics behind what causes wind (which I wouldn’t have been able to do anyway! LOL), I said, “Because God decided it was gonna be windy today.” Then came the beautiful words, the first spiritual question from my little boy, he said, “Where’s God?” At first I was so thrown for a loop I was speechless! I thought to myself, “Where IS God?! How am I going to explain this?!” So I told him that God is everywhere, He’s always with us, He’s in our hearts, He’s everywhere! He started pointing around the room asking, “Is He there?” I’d say, “yep!” He’d point to a new place and ask again and I’d respond the same way again! He lifted the blanket and asked, “Is He under there?” I said, “yep.” It was to die for. The next day it was raining so I said, “I guess God decided it was gonna rain today. Everything needed a drink!” Otto said, “I can’t see God.” Oh boy, I thought, how do I explain this one? I told him we can’t really see Him with our eyes but He’s there, He’s always with us. I pray for wisdom to answer my son’s questions. I feel like I’m entering a new stage here with Otto and I LOVE IT!!!!!!!!!
Even though the meds are helping a ton we still have our issues but they just seem so much easier to deal with! He goes to play therapy once a week for anxiety and ADHD. This week we’ll find out the results of his genetics testing to see if the mental retardation is due to a genetic disorder or not.

Looking Up.

Last Sunday, Aaron left for Aldama, Mexico with a group from Tenessee. They were gone for 6 days and came home last night. It is so nice to have him home! The boys missed him terribly! In fact, one evening I put Owen on the phone and he began to do that hyperventilating kind of cry. It was so pitiful and to die for cute! He would say, “I....love....you....Papa!” Everything was very staccato and between every word was hyperventilating/cry. I think it made Aaron feel pretty good and missed! After that, if I even mentioned “Papa” he would start in with the cry and I’d have to console him! 

With everything that’s been going on with Otto and trying different meds, me and the boys just barely survived the week. Only by the grace of God. In fact, Aaron asked if he could not go on this trip but they really needed him to go. I’m glad he did, from his stories, sounds like nearly everyone they ran into were divine appointments. He has some crazy stories about demons. Mexico has a lot of demonic presence and witch doctors. And even though this week was hard, it was a growth experience for me. Lots (I mean LOTS) of testing! And the funny thing? I can say now that it’s funny but at the time, it wasn’t....I have 2 friends with kids my kids’ ages and we planned to hang out a lot and even have Otto go over to play for a little break here and there. BUT...both of those households were sick with a nasty flu that’s had a lot of our staff sick! So I couldn’t hang out with them or send one of the kids over to play for like a little break. There was no reprieve! Only God! I could only rely on Him. (Plus, I called my mother-in-law at least twice a day!)
One reason this week was so difficult is because Otto’s 3rd medication we were trying ended up making him very sad. He was whiney or crying soooo much! The thing about the side effects of these medicines is that they gradually start showing up. So you don’t really notice it at first. Also every side effect he’s had has been a emulation of a issue he already has. So at first you really don’t notice b/c it’s something he’s always done anyway (anxiety, tics, whining/crying). By the time I’ve really noticed, they are so bad and I’m so at my wit’s end already! You know how when you’re in the middle of a situation it’s hard to see with clear, unbiased eyes what’s really going on? I called the dr on Wed and told him about the crying and he said it’s a side effect and to stop the medicine immediately. Then he also said that he’d like to refer us to a child psychiatrist b/c Otto’s is a complex situation. He said, “That’s ALL they do and it’s only part of what I do, so I’d feel more comfortable sending you there.” I feel really good about this decision and we go this next Thurs. I am very interested to hear what this dr has to say! So Otto is medicine free for now (no side effects!). AND AARON’S HOME! Life is good! Things are looking up!
This past week, Otto and I went to see a Christian counselor to begin play therapy for ADHD and anxiety. She was so wonderful! She was great with Otto and very encouraging to me! I needed that so bad too! She said she was a little surprised at his mental retardation label after observing him for almost the whole 1.5 hour session. She said he’s got to be just very borderline. I said, “I hope so!” She works a lot with ADHD kids and also abused and neglected kids, lots of kids in foster care. Otto played while we talked (this was our initial visit where she asks lots of questions, hears our story and our needs, and devises a plan of attack) and of course he acted up during this time and I had to discipline him. So she got to see all sides of him and how he and I interact. She was surprised how well he responds to me and listens (of course I didn’t think he was listening well! LOL!). She said she could tell how consistent we must be with him. At one point he picked up a toy and threw back his arm like he was getting ready to throw it at me and by his own will stopped and put his arm down. She said that she was shocked at that. That he had an impulse out of frustration to throw the toy at me but stopped, showed self-control, and did the right thing. She said that she sees ADHD kids with normal intellectual function (in other words, not mentally retarded), just bad parenting she called it, who can’t exhibit that impulse control. I was like, really? That made me feel so good not only about his potential but also b/c it was a “mama compliment”! I usually feel like I’m doing a poor job with Otto so it was sooooo good to hear her say the positives she saw. She said other wonderful things my ears and heart needed to hear but I won’t bore you and risk sounding like I’m puffing myself up. My only point was to share how God used her to encourage me and show me love especially during a rough week.
Some scripture that helped me feel stronger this week....2 Corinthians 12: 9,10, But he [Jesus] said to me [Paul], “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore [Paul talking], I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong!
I read that this week and thought, “Wow, Christ must be pretty powerful this week b/c I’m pretty weak!” LOL But it did make me feel better and little more empowered. :-)
Thanks to God for getting us through the week and showing once again how faithful and loving He is.
(I hear some guys are going back down to Aldama on Tuesday to do some work, please Lord let Aaron not have to go! LOL)

Rays of Hope.

Sometimes during a trial or down period, it’s hard to see positives, for me anyway. Sometimes it just seems like Otto’s lost away somewhere behind twists of his head, weird noises, spinning, jumping on the couch, pacing back and forth across the living room, countless repetitions of the day’s order, etc. Sometimes when I ask him a question, it’s like he can’t even calm his brain (much less body) down for 2 seconds to actually think of the answer and instead out of frustration just screams. Some really neat things have happened over the past several days that have given me hope!
Otto and I were on the computer looking up YouTube videos of lions roaring (his interest was sparked after a visit to the zoo the other day. Their lion actually roared for us, it was so cool!) and all of a sudden he asked about “Nana.” I said, “she’s in MI.” Then since we were on the computer, I decided to show him where Nana was. I looked up a map of the US and showed him MI, OH, TX, and Mexico. I showed him them all twice and shared who lives there and what other significance it may have and then asked him one by one where each of them was and he got them all right! On a big map of 48 states (Alaska and Hawaii were shown off to the side), for him to point out the correct places was pretty impressive to me and after only being shown twice.
The other day we were playing outside and I could tell he needed to pee so I told him to go inside and pee. Now normally he would get very upset about even the thought of going in by himself and throw a fit and so I usually concede and go in with him. This time he did not throw a fit, he just went in and obeyed! What?! I was shocked! But then I noticed he’d been gone for awhile and I thought, “oh great!” So I went inside and he was standing in the hallway like he was on his was out, shorts pulled up and everything and I asked, “did you go pee?” He said yes. I said, “what are you doing?” He said, “nothing.” Us moms know that that almost certainly means yes and not a yes I probably want to see! So I went into the bathroom and found the plunger standing on its own in the toilet. I asked, “what are you doing with the plunger.” And he replied in his way that there was a lot of toilet paper in there and it wouldn’t flush. I said, “oh you were trying to fix it?” He said yes. TO DIE FOR!!!!! You don’t even know. Normally if something doesn’t go as planned, he freaks out! But to see that he problem solved and tried to handle the situation on his own?! I was so proud of him!
The major tic he had with that last medication (the 2nd one) is happening much less frequently, like it’s dying out or something, since we started this new medicine (the 3rd one). That deserves a big “WHOO HOO” all it’s own!
When we’re driving around town, he astounds me how he knows where we are. We’ll pass a road and he’ll say, “me school that way, mama!” And I’ll say, “yeh!” Or where the pizza place is, etc. So cool how he’s aware and pays attention. The car is a pretty calming place for him probably b/c there’s music on in the car. Aaron and I noticed the other night....Otto was crazy hyper and we just happened to put on some music and were laying on the couch exhausted and after a few minutes observed Otto pacing back and forth across the room, but quietly. He was muttering some things to himself, but quietly. It was amazing! (He is rarely quiet!)
We were talking about baby Ethan, one of the new babies here, (whose mama’s name is Emily) and I was saying remember when baby Ethan was in Emily’s belly and Otto asked me, “did emmie eat baby etan?” I laughed and said, “no honey!” We talk about how when we eat food it goes in our belly and how babies are in the belly so naturally he thought she must have eaten him to get him in there! LOL I explained stomach -“belly” and uterus -“belly” and showed him how one was up higher than the other. Hmmmm.....think he got it? LOL It’s so awesome though to see him connecting things, it gives me hope. When he can calm down for 2 seconds these amazing little conversations can be had.
This new medicine seems to be ok so far although he’s still very hyper. I would like to give it some more time for his body to adjust to it and then maybe talk about upping the dose a little. I haven’t noticed any major side effects. Thank you, Jesus! Also, thank you for these little rays of hope. We go tomorrow to see a Christian counselor who deals with children who have been neglected or abused and does play therapy, which Otto has been suggested for. I am very excited to meet with her and very much hoping she’s good and very helpful. I pray for wisdom all the way around in everyone dealing with Otto.
Aaron left yesterday for 6 days in Mexico, please pray for us!

the Valley...

I haven’t written in a while. I didn’t feel much positive-ness to write about and thought that maybe I’d just wait til there was, to write. Things have been rough these last few weeks. But I decided that maybe just being honest and real about what it’s like sometimes with a special needs child may help someone who reads this or someone they know. I’m not comfortable sharing everything but maybe just a bit here. :-)

We have been trying to find the right ADHD medication for Otto and tomorrow starts our 3rd one. The other 2 made matters worse. It’s not uncommon to need to try a few to figure out which one will work best for an individual. Otto has so many other issues to consider on top of ADHD. Besides the mental retardation, he has significant anxiety and tics (or twitches). The side effects of many of these medications can make these matters worse.

He has been so different since last summer. That’s when we noticed the hyperactivity. Since this last December though, he has become, simply put, out of control! The first medicine we tried made him more anxious (plus other side effects too) to the point where Owen would just pick up a toy and Otto would scream thinking Owen was gonna throw it at him and the hyperness did not improve too much. Otto already had tics from time to time (we’ve considered Tourette’s Syndrome) and the second medication gave him a really obnoxious one accompanied by a noise that sounds like a sneeze. He can’t control it. And it’s driving me insane! And he’s aware of it, you know? Once he starts doing it, he looks at me like, “Sorry! Here is comes again!” (Poor guy) And the hyperness did not improve much. So now we are trying this third one. I’m about at the point where I say, “Just forget it! No medicine! We’ll just deal with him as he is!” But if we could find the right one and it helps him calm down, maybe he could learn better, focus better, and maybe even catch up more. I don’t want to give up on trying medicine yet b/c what if we found one that really helped him? It’s just been a very trying process. And I’ve had to do so much research online of these drugs and the side effects and keep in constant contact with the dr via his nurse which has just been annoying. I’ve also been doing alot of research to find out different strategies for behavior management of an ADHD child. I feel pretty stressed. And with a child like this in our home, home life has been very stressful.

And I can’t imagine what it must be like to be Otto trying all these drugs? You know how it feels when you take a medicine that makes you feel not yourself? Sometimes that can feel good but you know the times when it doesn’t feel good....that’s probably Otto during this trial process. I feel so bad for him. Underneath it all, he is still that very loving, compassionate little boy who is very concerned about everyone else’s feelings. That makes it even harder for me b/c I know he knows how frustrated I’ve been. Sometimes it’s just really hard to hide, ya know? All of us moms have “mom guilt,” it just comes with the territory. But I have been feeling more than my fair share lately. I just want to help my kid and I can’t just snap my fingers and fix the problem and that KILLS ME!!!!! I have to be patient? Not my strongpoint! I can’t control the situation? But I need to!!!!

Otto has started waking up from time to time in the middle of the night yelling. What’s that all about? Is it a side effect? Is he having nightmares? This is all such a big puzzle. I have so many questions. I often find myself so frustrated and in tears crying out to God asking, “What is wrong with my kid?! How can I help?! What do I do?! Give me wisdom! Can you please help me?! Send me some relief!” It’s through trials that I cling to God more tightly, honestly...out of desperation. I wish it didn’t take trials for me to remember to draw so near to Him. I accept all that I’m being taught through this. I hope it’s over soon and we have some relief and Otto can just be a happy little boy and enjoy life!

How it's Going.

Well, Otto’s been on medication for ADHD for almost a week now. We’ve definitely noticed a difference. In fact I took both boys to the grocery store today and did NOT put Otto in the cart, he walked alongside me. That never would have been possible before. He listens better for the most part. I still see the dramatic breakdowns (though much less often) and there is still some whining but all in all improved! So we are happy with that!

What’s next? We meet with a Geneticist on March 6 to rule out any genetic disorders. From there he will determine if we continue down the genetics testing route or if we go down the neurological testing route (to see if there’s permanent damage or reversible brain damage from his malnutrition as a baby). In the meantime, we are waiting about a month to let the medicine fully do what it’s gonna do. Then we can see what symptoms remain that we need to deal with and will begin therapy to learn how to deal. I’m looking forward to that.

Please continue to pray! ....that the brain damage is not permanent, that the medicine will help him to calm down and focus enough to take in more of the world around him and learn more and catch up, that when he is given an IQ test at age 6 in November he will score above 70 (below 70 is mentally retarded).

Also please pray for me and the boys this week....Aaron left for Mexico today until Friday, 6 days!!!!! Aaron and I are such a team with these boys, a support to one another, a break for each other, a real team! I’m so grateful for him and his humor and I miss him and his help terribly when he’s gone! Also that he comes home safely! :-) Thank you tons!

The results are in!

This picture is so characteristic of Otto. We were in a village in Mexico, playing a game of Duck, Duck, Goose (Pato, Pato, Ganso) with the children and Otto scoots right up next to this boy (Otto’s on the right), who was much younger than him and he had his arm around him but by the time I snapped the photo, his arm was down and on the ground. It was too cute! It was like Otto was making him feel comfortable b/c this boy didn’t want to come over at first and join in the game.
I posted on 12/8/07 about how we saw a specialist and she wanted a psychological evaluation done on Otto to see if he had Reactive Attachment Disorder (RAD) being that he was adopted, and then if not that...look into ADHD. Then I posted on 1/29/08 that we went and had the psych. eval. done and were waiting for the results. Well in the meantime things were just continuing to get worse here at home with Otto. He has been very hyperactive and has much difficulty following directions. I began to get impatient waiting to hear the results of the psych. eval. and called his regular physician to ask about an appt to look into ADHD. I was getting desperate for some help and some answers to explain, honestly, the past 3 years but even more so the past year as we’ve noticed things getting progressively worse behavior-wise. I met with the social worker at the doctor’s office yesterday (that’s their 1st step in the ADHD process, then you get an appt with the dr) and filled out a questionnaire that definitely ended up pointing right at ADHD. But we both agreed that there was definitely also something else going on to explain all the other things I described about Otto. It’s not uncommon to have ADHD paired up with something else. I was just dying to know what this something else was!!!!!!! Give me some answers!!!!!!!! In the meantime, mind you, we still were waiting on the results of the psych. eval. One of the things the social worker mentioned was Tourette’s Syndrome b/c of his tics or nervous habits we call them. I had to take a questionnaire for ADHD over to his teacher at school and she mentioned Tourette’s Syndrome and then a friend online who has a special needs child mentioned Tourette’s Syndrome and gave me a website to check out. I thought ok this is freaky that this has never been mentioned before to me but now 3 times in 1 day it got mentioned. So I checked out the site and began some research last night.
It definitely sounded like Otto’s little “things” he does. But then it said that Tourette-like tics can also be a symptom of some other things and it listed several including mental retardation. I thought, hmmmm this has been mentioned before to us (in December) so I decided to look it up and find out what it means exactly. So I did and looked at all the things that could cause it and of course there were many things including things at birth (which we have no info on) or family genetics (which we have no info on) and many other different things. Then down in the list I noticed “malnutrition” listed as one of the causes so I thought hmmmm....well we know he had that. So I went on to research that, what it means, the effects it can cause, etc. I learned that while some can fully recover from malnutrition, and some can even die, some can suffer mental retardation. In that moment, at the end of this lengthy trail of one thing leading to another as I was researching, I truly felt like this huge lightbulb went off. Otto’s malnutrition was serious enough that he was hospitalized for it, we do know that much. So how bad does it have to be to cause mental retardation? It just made so much sense and it seemed like several pieces of a puzzle fitting together. I was not convinced this was the answer yet, just found it all very interesting. I was sooooo curious now to see what the psychologist was gonna tell us from the psych. eval. b/c we had it done looking for one thing, RAD.
So this morning I called the psychologist and he finally had the report done from the psych. eval! He said that his diagnosis for Otto is mental retardation due to a severe deficiency of protein early on in his life. He said he feels that it’s a mild case and that it may be permanent or it may be reversible, some neurological tests may be able to help determine that (and of course tons of prayer for healing!). I couldn’t believe it!!!! He said exactly as was revealed to me last night in my research....mental retardation due to malnutrition!!! With the added bonus of....it’s only a MILD case of it!!!!!
It’s so crazy! I totally believe that God revealed that to me last night and I can see why He did. If I had not read all that I did and begin to put the pieces together last night, I believe I would have been devastated at his diagnosis this morning. I mean remember, I was waiting to hear if it was RAD or maybe ADHD. This would have been shocking to me to hear...mental retardation. But it wasn’t, I was totally prepared and all it did was confirm what I already strongly suspected through the research. I am in awe of how God loves me and knows me inside and out and He protects us from what we can’t handle and prepares us so that we can.
I am so utterly relieved to finally have answers. They may not be necessarily the ones I would have chosen, but they are answers nonetheless and we can finally move forward and learn how to parent this child right where he’s at. It has been such a trial the past 3 years wondering why is he still so far behind, something just doesn’t seem right in how he acts and reacts to certain things in certain situations. And now we know and now we can move forward and deal with it accordingly. I do not believe Otto is “sentenced” to this for life. Many of you who know him well may be shocked to hear this, thinking “but he is so smart?!” I believe God can heal and I believe God has a plan for Otto and maybe this is not permanent. God has Otto is His hands and I ask you with all my heart to keep Otto in your prayers and pray for healing and for God’s will in Otto’s life.

[4 years ago today, we chose Otto to be our son! ie: we contacted the adoption agency and said, “We love him, we want him!]