Wednesday, August 24, 2011

Bright--And it Begins...

Bright is going to be six years old in a few months. It's hard to believe that this child has been in our lives for five years. Wow. Five years. First, we watched him fight to live. Then we watched him fight to catch up physically. Next, we prayed for him as he did the hard work of entering our family and learning to love and trust us. Now, we enter into a time when we can hopefully identify his special needs so that he can continue to develop to his highest potential.



It's been a long time coming. From the moment we said "yes" to his adoption, we knew that Bright would come with some unknowns. Today a therapist said, "You knew his care situation was like this and you still said yes?" Umm...yes. And we would say yes again, and again. We didn't know what Bright's needs might be in the future. Would he live? Would he walk? Would he talk? Would he be able to attach? Will his brain be damaged by the lack of nutrition and stimulation in his first year? We didn't have answers to these questions. And we still don't have answers to all of them.


When Bright came home at 20 months he was a new walker, and had just learned to say his first word. After a hard first visit to Ghana (3 weeks) and an easier second visit to Ghana (4 weeks) Bright and I were tight. He and I were a team. He had spent 7 weeks with me--only me--learning what mommy love is. [His first mom died when he was a newborn.] I remember that when he first came home he could not sleep unless I was touching him. =-) Even if he was in a deep sleep (I thought) he would wake as soon as I let go. To this day, he holds me very tight.


His first year home Bright almost had a sort of selective mutism going on. He would talk--but only in our house and only to our family. Little by little he let grandparents in, and then a few other family members. He was around 4 years old before he would talk to others. You can understand then what a HUGE celebration we had the first time he volunteered to pray before our meal at a restaurant! Bright perseveres.


By the time he was four years we could see other behaviors that weren't typical. He didn't just watch TV or "read" books for fun. He did it to escape. He couldn't cope in the real world without self-initiated "time outs." He started stuttering sometimes. His outbursts became more common. His eye contact is "off" sometimes. [You can often see it in pictures.]


Sleep became more and more of an issue--to the point where it's almost like Bright cannot fall asleep until his body is absolutely physically and emotionally exhausted, or very medicated. {We currently have to give him two things to help him fall asleep, and even then he gets less than 8 hours.} Bright wakes up early and stands over us while we sleep. He is eerily quiet. He uses that time to destroy others' property (his siblings') and to gorge on sweet foods in the pantry.


Over the years we have seen a smart boy. He loves to learn. He loves to memorize. He can hear a song one time and then know how to sing every word. And yet, this smart boy cannot understand "front" or "back" or "up" or "down" or anything else that is the least bit abstract. He can memorize what is allowed and not allowed, but he does not have a dialog within himself to FEEL right or wrong.


Bright wants so much to love his siblings. I believe he does love them. However, he also hates them. They are competition for my love. They take my time from him. His "real" self (the self that isn't damaged) peaks through and plays seamlessly with his siblings. He thanks Samren for being a good big brother, and tells Taevy she is his best friend. He prays for them at night--real prayers, not rote memories of what he "should" say. But in the midst of doing something with them (talking, playing, learning) something snaps in him and he becomes threatened. In that snapping moment these siblings that he loves become his enemies. They are the ones who want him to go away...not to have the love of mom and dad that he so wants and deserves. When that snap happens, he hates them. He wants to destroy their things. He wants to "leave his mark" on their property (literally---often writing on them). He wants to hurt them (and does, and sometimes threatens to hurt them while they sleep). He wants them to know he will fight for his spot in this family. I just wish he knew they weren't trying to take his spot away. =-(


Today I met with Bright's new therapist. I think, at this point, that it will be a good fit. We are seeking outside help because for the first time I feel like one of my kids' needs are beyond what I can handle myself. I don't understand him. There are too many factors. A therapist is a good place to start. Someone who can see things more objectively is what we need. Today I had an hour and a half to sit and pour out everything that has us concerned about our little boy. She listened, well.


Of course, you can't figure out a child in one visit whit his mom. You can only have a rough guesstimate of things that might be going on. However, today was enlightening. I have always thought, "Bright doesn't have attachment issues." Even some of you have said, "Are you sure he doesn't have attachment issues?" See, I have another kiddo with attachment issues and I KNOW what that looks like! It doesn't look like Bright, even though some of the things he does are classic attachment issue things. Oh...except...I was focusing on my relationship with Bright. I wasn't thinking of his relationship with the others in our family. I also wasn't paying enough attention to the attachment CONTINUUM. Is he attached to me? Yes. Is he attached securely? No. This is what I have admitted to myself today for the first time.


This child is fighting for me. He loves me so very much, but he can't trust the world enough to believe that his place in my heart is solid. He can't trust his siblings to share me with him. He is defensive of our love. He will do whatever he has to do to make sure nobody takes his mommy away (again). Oh my heart. I hurt for him. And I hurt for my other kids, who have also been so affected by this. [The issues seem to stem from me, not Eric--at least not to the same degree.]


So...attachment. It's on the list of things going on, quite possibly. The therapist made very good points and helped me to see this is probably the case.


Sensory. Yes, we've spoken about that on this blog too! You all have asked me, "Are you sure he doesn't have sensory issues?" I could see little quarks with Bright, but nothing like what I saw with Taevy. Again, it didn't look the same to me. Ahh...but auditory processing? Hmm...forgot to think about that part. I did a sensory survey today that points to a very possible auditory processing disorder. It may be that my poor baby just cannot process what is going on around him. That would be so scary. That would make anybody feel terribly anxious, I'm betting.


Speech and OT. Yeah. We knew this was a part of the puzzle, but so far down on the priority list. I was/am much more concerned about his behaviors/emotions than the physical stuff. But the therapist made a good point today that if he can't communicate properly, the frustration and anxiety will continue to build and build and build. Time to figure out exactly what it is that makes Bright speak so....differently from other kids. [It's just different. Not like your usual speech impediment.] Also, time to get the Occupational Therapist to check out the hypotonia issues with his mouth. Six year olds shouldn't drool, or chew meat for 30 minutes, or over stuff their mouth constantly.


Neuro/Cognitive: This piece of the puzzle scares me almost more than the behavioral peice. Oh, how heartbreaking it will be if we learn that our boy's brain was damaged from the lack of nutrition his first year. Lots of kids DO come out just fine. Still, Bright's case was severe. It also makes sense that there may be real problems with learning. Abstract thinking may always be difficult for him. With the schoo,l we will be starting the process to have him evaluated for that type of special need. The therapist will use the results of that testing to help us figure out how we can best reach him for the behavioral/emotional part. How can you teach a child about something as abstract as attachment and love when he can't understand up and down? I know how to help an attachment-challenged child who has a healthy brain. I don't know how to help a child whose brain may be damaged.


So this is where we are, as of today. Next week Bright meets with the therapist for the first time. Then, 2 weeks later, we have a meeting about the care plan the therapist has come up with.


I can't tell whether I feel better or worse, now that someone so qualified has said, "Yes, your son needs help. A lot of help." It feels good to have taken this first step for him (and to have the therapist say that we couldn't have really taken the step much sooner). At the same time, the busy mom/wife/adoption coordinator can't help but to think about all of the outside appointments this is likely to add to our already very busy life.


Lots of times I get comments about how I "do it all," or "you sure do have a lot on your plate." Even the therapist today, I could tell, was really wondering why in the world we would choose to homeschool with everything else going on. I think sometimes people think I deliberately try to add more and more and more so that people feel sorry for us, or so that they think I am super mom/wife. It's not that. Truly.


The Lord has put these 5 people in my family. He chose for me to care for these five. What am I going to do? Say no? I figure...whatever the Lord tells me to do is better than whatever the alternative could have been. I must live my life focused on the eternal (thanks B for the reminder!). These five people won't be sick in heaven. They are my family--the one God chose for me. This life on earth--according to my belief system--is just a tiny droplet of time in all things eternal. Oh, how blessed I will be to spend eternity with these 5 people! They won't be sick there. I won't be sick there. All of the trials of this place will be but a distant memory.


Right now, with this life of mine, things *DO* seem overwhelming. I'm human. I won't lie about that. I am understanding for the first time what it means to "take it one day at a time." When I look even a week out, I start to feel defeated. But if I can just get through this day...just this day...


Love,

Anita

7 comments:

B 7:58 PM  

I know this may seem optimistic, but {as a mom to an attachment challenged, sensational kid} I am excited to see where your pursuit of How to Help Bright Best will lead and what may improve both for him as he gets the pinpointed help he needs and for you as you learn to understand him even more and tweak things to make it BEST for you all...not just doable. Virtual hugs. ~B

A. Gillispie 8:41 PM  

Thanks B! I feel optimistic as well. I so desire to have more clarity on his issues so that we can face them and move onward and upward! I'm sure there will be hard days, but if we are making progress, it will all be worth it.

CarrieT 10:58 PM  

Anita, our daughter Holly came to us from Korea at 4 years old after being shuttled from one foster home to an orphanage to another foster home to another orphanage, etc. We knew she was likely on the autism spectrum and also mentally handicapped. She has been with us 2 1/2 years now. She has lots of behavioral issues besides obviously cognitive ones.

Just today we saw the developmental pediatrician for the first time in over a year. (She is THAT busy in our town!!) And we had a great meeting with her. She really heard what we were saying about how frustrated we get with her behaviors and severe opposition to even the slightest suggestions/requests often!

It is so hard to figure out what to do when you have so many issues going on: attachment, cognitive delays, possible ODD, rough first 4 years, autism spectrum, etc. We may never have a label for everything or a cause, but we have to deal with the behaviors and symptoms we SEE and observe, even if we don't understand where it is coming from.

We have also gotten the "wow! You guys are saints for adopting her!" Even from a child psych we took Holly to for a while!! (Thankfully we think the doctor today can find us a new, better psych!!) We need help and concrete suggestions to try!! Not flattery!

Anyway, sorry for rambling. But I just thought it was interesting that you had this meeting TODAY also and that your Bright is 6, just like our Holly. I will take that as sign to pray for Bright as I pray for my girl too. :-)

Thanks for sharing openly from you heart.

Carrie T. - mom to 4 from Korea

Dozen Senses 9:08 AM  

You are such a uniquely great, devoted mother!

Dozen Senses 9:09 AM  

You are such an awesome mother.

Mama D.'s Dozen 10:37 PM  

Thanks for sharing. Thanks for the transparency about the tough stuff.

We are in desperate need of the finances to pay for therapy. Our Little Miss has been home for 3 1/2 years and things are spiraling downward quickly. She is filled with such anger, it breaks my heart.

If we can get our adoption tax credit, we may be able to get the help that we need.

Hoping your new therapist can really pinpoint the things that you need to do.

Blessings,

Laurel :)

A. Gillispie 11:04 AM  

Laurel, we are so blessed that our insurance will cover Bright's therapy, minus a $25 co-pay for each visit. I hope that ya'll are able to get insurance soon so that your sweety can get the help she needs.