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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!
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!
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!
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 Syndr
ome 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!]
Yesterday we saw a specialist for Otto. We traveled 40 minutes to Edinburg to see a Developmental-Behavioral Pediatrician at the South Texas Child Development and Behavior Center. Otto’s pediatrician referred us, and we scheduled the appointment back in late September! I had been so excited to go and ask all my thousands of questions I still have even after 3 years of having this child and also some new ones that have arisen. Part of me felt a little skeptical that maybe this would just be one more time that we walk away and get some blanket answers like, “He’s just developmentally delayed!” and “Well, as long as he continues to improve...!”
I wanted Aaron to come too so he could help me remember things that concern us and add his thoughts too. I’m so glad he did because not only did he do just that but he also was a support for me as this was a hard visit for me. Also, he helped me remember things she said, later on that day. It was emotional for me and so I didn’t really “hear” all she said.
For the first time we really got some honest and real answers. She, the doctor, really laid it all out for us! I think part of this now is because he’s 5 years old. Also I think it’s because of her specialty. Thank God we are here in TX to be able to see this doctor! When we were in MI, Otto’s pediatrician wanted us to see this kind of doctor but there wasn’t one in the Detroit-Metro area that took our insurance. I’ve mentioned this before too but also Otto receives speech and occupational therapy that he could not get in MI because of our insurance.
She sat with us for an hour and a half asking us question after question and answering ours!
After gathering all her data from us she showed us 5 categories: speech, fine motor, gross motor, self-help, and social. She gave us the age-equivalence of what Otto is able to do in each of these areas. While some were as low as a 2 yr old, some were up to a 3 and a half yr old. She told us that Otto is like a 3 yr old developmentally, and that he should be treated as a 3 yr old. While I knew in my head he was not developmentally a 5 yr old, to see these numbers in black and white just hurt in my heart. She said that Otto will only carry this label of Developmentally Delayed until he is 7 yrs old. At that point the label will change to Mental Retardation. As you can imagine at this point I was shocked and the tears began to flow. Now, I suspect all of you who know Otto well would think as we have that there’s no way he is that. However, many factors complicate things. There’s no way to determine his IQ at this point and speech and one of the other categories I can’t remember which one, are usually pretty good indicators of what the child can comprehend (his speech came in at a 2yr and 10mos old). I believe Otto knows more than he can say. Of course I’m not oblivious to the fact that I may be an over-optimistic parent that may have difficulty accepting the reality of her child if it falls below the hopes and dreams she has for that child. I’m praying that by age 7 he will prove what a lot of us know about him and all for God’s glory!
The biggest unknowns for us to be able to rule out is Otto’s family history and birth history. One possibility (although unlikely) is that he could have a genetic disease that would lead to these delays but testing for those will be a last resort and really only for the knowledge of family planning for Otto down the road. In other words it would only be to know if there’d be something genetically that he could pass onto his own children.
Many of the things we described to the doctor would normally cause her to investigate ADHD however that will only be the case if we can rule out Reactive Attachment Disorder (RAD). She said that all adoptive children need to be evaluated for this to see if they have it or not. HOW COME NO ONE HAS EVER TOLD ME THAT?! So she ordered a full psychological evaluation of him. Also she wants to add physical therapy to his therapies that he receives and finally she stressed very heavily (after we talked at length about school choices) that he be enrolled in a special education program (like he was last year), obviously through the public school system. I actually felt relieved at this because I’ve been questioning whether our school we provide here is best for Otto. I haven’t given up on my desires to homeschool (maybe that will be possible somewhere down the road) but for now he needs services that none of us can provide and that the public schools do a good job of! I’m praying he gets a very loving Christian teacher!
The doctor stressed an urgency since 7yrs old is only 2 yrs away! And I do understand what she is saying. Also though, Aaron and I were talking and our goal is to prepare this child for manhood and that at age 18 he is prepared to go on to college if he chooses. So after the initial shock of it all, I was comforted that God is in control as He always has been and always will be and that we desire His will whatever it may be, for His own glory and honor! Please join us in prayer for Otto that we may all agree for these things.....protection for Otto while in the public school and that by age 7 he blows everyone away with his abilities and improvements, in Jesus’ name.
Thank you Heavenly Father for this child and all that he has brought to our life. We surrender him to you, have your way with him, all for your glory!
These boys God has entrusted to me are now 5 and 2! What a joy and blessing it is to be their mom! (...also exhausting! LOL) They teach me so much about myself, God, the world around us. May God bless them immensely!
“Otto” means prosperous, wealthy. Isn’t his life so far evident of that? God has brought him out of poverty into a family full of love and the knowledge of a loving Saviour full of grace. God has already “prospered” Otto and made him “wealthy” and will only continue to do so. For He has plans to prosper Otto, plans to give him hope and a future (Jer 29:11)! Otto is such a compassionate young boy always concerned for everyone’s feelings, always ready to give a hug to whomever will receive it! In fact he is less interested in play and more interested in whatever the nearest person to him is doing, and that’s what he’d prefer to do (God knew Otto needed a brother, a buddy, and they are!). He is very cautious and structured, needing to know the order of the day, what comes next and then after that, to be prepared of course (in the morning he is already asking what I’m making for dinner!)! The night before he is already asking what we’re doing when we wake up (“Is it a school day, church day”)? He is also quite a goofball! He has Owen in stitches with goofy faces or antics often. I believe Otto’s love language is touch. I believe his gift is for people. I can not wait to see the plans God has for this little boy!
“Owen” means born to nobility. Oh, and isn’t he, born into the kingdom of God! Born into a family fully devoted to the kingdom of God. He was born happy, from his early days he was already so content to sleep through the night and hardly crab unless for good reason. He nursed well, took a pacifier well, and was not the least bit needy or demanding. He made all his ‘big’ transitions well...solids and sippy cup at 6 mos, never really used a bottle much, milk at 12 mos, moving several times in his 2nd year, sippy cup to a cup with no lid, and finally the big one just the other night - NO MORE PACIFIER! The first night he didn’t even cry once! There’s been a little crying since but nothing major! Praise God! Owen is packed full of confidence, enough for 4 people! He loves adventure, exploring, running free, taking risks....lots of them! He is a sucker for a smooch (on his fully puckered lips) from any of us. Owen is very sociable, with people he is familiar with, and very excitable! Everything is exciting to him! He always has a smile and a squeal for that which pleases him, which is just about everything! He’s not too far off before calling, “Otto, ‘om on!” He wants his buddy to accompany him on whatever adventure he’s headed for! Owen has a sweetness about him that draws you in underlying the “forge ahead” drive toward whatever! Look out, here he comes!
Otto and Owen compliment each other so well. Where one has weaknesses the other has strengths and vice versa. How perfectly God has given them to each another. Honestly I see a well made TEAM here between these 2 boys and I am praying to that end, that God is building them up as a team for His glory and honor and for the furthering of His kingdom! I’m so honored to be a part of their journey toward manhood and a relationship with their heavenly Father. My deepest prayer is that God will say to me with respect to being their mom, “Well done good and faithful servant!”
I just love when we get a new family photo done! We’ve never had a professional photo done of us or of either of the boys (Otto had a school picture done last year but that’s it!). It’s always just been one that someone took of us on an occasion when we were all dressed up or we set it up ourselves on the tripod and had someone just press the button! Nonetheless, whenever we’ve had some fresh photo done of us, it is like a very precious gift to me! I want to look at it all the time! It reminds me of how I felt on Christmas morning as a kid or when I received my wedding ring from Aaron on our wedding day or when we decided I would stay with Otto in Guatemala or when Owen was born. All of those moments were so exciting and rewarding and the excitement lasted long past just one morning as with “Christmas morning.” They were constant reminders when I would wake up, “Oh yeh, we’re married!” or “Oh yeh, we have a son!” or “Oh yeh, we have a baby!”
It may seem like hardly a comparison to just have a photo and speak of it alongside some of the most memorable moments of my life. But it’s not just the “picture” in and of itself. It’s what the picture represents...my family. All the moments we’ve shared...the highs and lows; the journey to each child; Aaron and my interesting/unique story of meeting (LOL), falling in love and marrying; our special “traditions”; us all cozying up in our pj’s at bedtime; all of the millions of moments, big and small that I wouldn’t trade for ANYTHING! The “picture” is the dearest representation to me of sweet joy and blessings. When I see a picture of us all, I just sigh and think, “I have so much!” I am reminded in this moment of how God our Father must look at us, his family, his children, with such sweet joy remembering all the millions of moments, big and small, good and bad, that He has shared with us...whether we acknowledged He was there or not.
As a child, my family looked like this. I have this photo hanging on my refrigerator. I love this picture! It represents so much to me...security, unity, love! I know what event we were at, that my mom made most if not all of our outfits we were wearing, I can picture what the ride home was probably like (our natural family banter, teasing and loving, maybe a little bit of my brother and I complaining about one another!). I am so thankful that I had a mom and a dad together in the same house who loved me! My heart just breaks for people who never knew this either as a child or even as a parent, to have your family together, whether by death or divorce.
We have a family who comes to our church who is fighting to make it. The husband is entangled in a mess of which I am not sure the details but it sounds like either alcohol or an affair. They have 2 boys, one is about 14 or 15 yrs old and the other is about 11 yrs old. It varies week to week whether Juan will come to church with his family or if Micki comes by herself with the boys. They always ask for prayer and I am so touched, my eyes watery every time they walk through the doors or ask for prayer or the many times we as a church body have laid hands on them in prayer. One time Juan even specifically asked for prayer saying he keeps knocking on the doors of hell. One time Micki came, after Juan had obviously left, and asked for wisdom in raising her boys alone. They are truly struggling to fight to stay together. It’s hard for him to say no to whatever it is that’s drawing him away, and to come home, and it’s hard for her to trust and forgive. It breaks my heart. Please pray for this family, Micki and Juan and their 2 boys.
I am so completely fulfilled caring for and loving my family, and I thank God for the sweet blessing He’s given me in Aaron, Otto, and Owen!
