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!