Friday, September 16, 2011

A House with No Doors

Yesterday we had a meeting with Bright's therapist. This was the meeting where the therapist was to give us her assessment of Bright, and fill us in on her care plan. Eric took half a day of work so that he could be there. It didn't go as planned.

She started with sharing that she believes Bright experiences significant anxiety in his life. No surprise there. Didn't need a therapist to fill us in on that one! She feels that it's more like "Social Anxiety Disorder" than "Generalize Anxiety Disorder." Not sure I agree with that. He's anxious about pooping and last time I checked that had anything to do with being social. I digress...

Next, she shared that Bright is developmentally delayed. Again, no surprise. She showed us how the person he drew was in scale with how a 4 year old should draw rather than an almost 6 year old. She gave us examples about his emotional development that would indicate a 2-3 year old, not an almost 6 years old. Yep. I'm on the same page with you, Dr. T.

Next, she went to the way Bright drew his person. He drew a blob around the mid section of the body. You could see her eyes widen as she interpreted this to be g*nitals. Children at this age who have not been abused (usually s*xually abused) do not draw g*nitals. The thing is, he wasn't drawing those! He was drawing clothes. This is always how he draws clothes because this is how I draw clothes (the uninspired artist that I am). I just draw a simple shape like a rectangle or square or triangle to represent pants, shirts, skirt, etc.. Anyway, the doctor doesn't want to hear that what he is drawing is his attempt to copy the clothes he sees me draw. She is stuck thinking he may have been s*xually abused by his family in Ghana--you know, between all of the sustenance farming and work to keep him alive. Whatever.

We talked about Bright's drawings, in general. She brought up the good point that Bright doesn't ground his drawings. His people rarely have legs (just a long center body) and they seem to float. He doesn't ground his houses or people with grass or earth. Instead, he surrounds them with clouds, as if they are flying. This indicates how Bright feels trapped. He wants to "get out" of the anxiety he feels. He wants to fly.

We talked about Bright's house. When she asked him to draw a house, I knew immediately that she would see something interesting about it. Bright's houses do not have doors. Sometimes they have a window, but never a door. If I ask him to draw a door, he will, but he never thinks to do it on his own. This represents the anxiety he feels in his world. He feels trapped. He feels insecure. He feels so, very, scared. Did you know that only 2% of children who are "healthy" (meaning no abuse or neglect or trauma) draw houses without doors?

I thought the information about his drawing was interesting, and the symbolism makes sense. I had not tied that together on my own, so I'm thankful for the Dr.'s expertise.

The Dr. did not speak about attachment issues to our other kids, which I thought was interesting. She felt pretty sure of that in earlier sessions, and I even came to agree with her observations on that.

The Dr. spoke about sensory issues. She feels he is sensory-seeking (but I do not). He isn't like Taevy that WAS sensory-seeking. He does seek out sensory input when he is feeling scared and anxious, but not as a general every day all day kind of thing. The Dr. fees sure there are some auditory processing issues. Yes, totally agree. I hadn't at all put this together before we saw her, but she has helped us to see several examples of how Bright struggles in this area. Fine. Sensory stuff. Been there, done that. Not scary.

The doc also makes mention of how I am Bright's grounding in this world. Me. Honestly, I never noticed it before going to therapy, but it's true. When she asked him a question, he looks at me. He always looks to me--to help him cope with a world that is overwhelming to him. I am his person. I am his safe thing. I AM a coping skill for him.

This is where it gets tough for me. When it comes time for the doc to give her over-all care plan. I'm expecting her to recommend therapy 1-3 times a week...give us some materials and exercises to help with sensory stuff, etc.. Instead, she says that she strongly believes Bright's IQ is probably in the "borderline to mild mental retardation" range. She guesses 70-80. She feels that until we know what sort of brain we are working with, we can't go forward with therapy. She has been doing this for lots of years and has worked with lots of kids, and is usually not wrong when she guesses low IQ (although she is careful to say she could be wrong). She says to let her know when we have all of the special needs testing back from the school.

That's it? No more help for Bright until we know how much his brain has been damaged by the neglect he suffered his first year? I'm sure she could see my eyes widen to saucers and my mouth drop open. I suddenly felt like I was trying to hold on to her while she was trying to make me let go. No! We need help! I sort of talked her in to seeing Bright once every two weeks until we knew about the cognitive/neuro side of things. She said she could help him with coping strategies. Okay. Better than nothing.

As we walked out of the building, I was holding Bright hand. He's smiling and looking up to me with joy--wallowing in the specialness of being out in the middle of the day by himself with mommy and daddy. He has no clue that my mind is spinning out of control with thoughts about his future.

Mental Retardation.
Cognitive Disability.
Neurological Damage.
Brain Damage.
Low IQ.
Educable Mentally Retarded.

I have always known that Bright likely had *some* brain damage from what he went through. But I didn't know that what he went through could "damage" him to the point of some of the labels above. The therapist even said something like, "Depending on what we find out, it could mean that we start focusing more on life skills in school and less on learning to read and do math." So for the first time I am considering whether or not my son will be able to live independently as an adult? It took me for surprise.

Yesterday, after I took Eric back to work, Bright and I walked into our cool empty house. [The other three kids went to the zoo.] I cried. He smiled up at me and said, "You the best mommy in the whole world. Don't be sad mommy." I wish I had as much confidence in myself as he has in me. We took the opportunity of a cool, rainy, quiet day. We went upstairs and cuddled under the blankets for a warm comforting nap. Sometimes a good quilt and a good cuddle can make everything seem better.

I know that a doctor's guess does not equal definitive proof. I know she could be wrong. I know that Bright is the same boy today that he was yesterday, before something like "mildly mentally disabled" entered into my thought process. I know that we won't let a label define what he can accomplish in life. That doesn't make me less sad for him, or his biological family in Ghana. What do I tell them as he grows up and they ask how he is doing? How do I tell them that their attempts to keep him and the rest of the family alive has cost him so much? I guess those answers will come in good time.

I know LOTS of people who not only have mentally disabled children, but they sought them specifically to add to their family. I don't want any of my friends to think that, because I am sad about Bright, I in some way think they are crazy for adopting disabled kiddos. Not at all. The mental disability thing just isn't something that Eric and I knew we will be called to experience with our children. Ha! The Lord is always teaching me that He is the writer of my story, and I do not play the staring role--He does. I guess He has greater plans for me and my children than we could have ever imagined for ourselves.

One day, Bright will draw houses with doors. I believe it with every fiber of my being.



Kait 1:54 PM  

I can see why this is terrifying and shattering your world. It's a sudden change in things you took for granted about your child - that he would grow up, live independently, marry, have children, be a "normal" adult.

But reading this, all I could think is that God certainly knew what He was doing when He put Bright in your family. You'll fight for him because you're his safe place and you don't take that lightly. You believe in him, not only that he'll draw a house with doors one day but also that he'll reach his absolute maximum potential even if it looks different for him then for other kids.

abarrelofbakers 1:58 PM  
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Charmaine 2:50 PM  

Anita, thank you for being so honest and sharing so openly. You will be in my prayers, as will Bright and I pray the Lord will bless you beyond words!

Chantelle 3:37 PM  

Oh Anita... ((((hug))). Our 7 yr old is going to have a full neuro evaluation in November and we are suspecting many of the same things you described here. We, too, didn't go into his adoption prepared for this sort of thing - but of course God knew all along and He chose our families to parent these kids. Thanks for sharing your heart.

Amy 5:25 PM  

Oh Anita, that is just so much to process. I can't even imagine. I am so glad Bright has a mom that loves him and gives so much to try to help him be his best self. I know you'll do that every step of the way and hopefully some of what the therapist is predicting IS off, but if it isn't, you'll find the way. Praying for you all. Sending you big hugs.


Betsy 6:34 PM  

What an emotional day. Abarrelofbakers... "But God..." wow! I too see the amazing way God works in providing you with a boy that needs love and gives love. We will pray for you guys to have the strength and wisdom to know the next step. We may not have the next twenty steps, but the next one or two will be shown. Love ya.

Becky 6:10 AM  

Oh, Anita. I've felt the same way so many times with Juliana. I've cried buckets over things she had to endure that everyone is telling me we might never be able to fix. It makes me want to scream!

Every child is so different in the way they react to trauma that I have no advice except for you to keep fighting. You're a fighter, he's a fighter. Keep fighting for him. I would also add that you have to find the right therapist for Bright and go with your mom gut. Is it telling you that you need a second opinion? We've had six, and still can't find a match. So, Juliana isn't in therapy anymore and I've made myself an expert on what she needs. She's made more progress that way than she ever did "in therapy" with the therapist that I just didn't click with.


CarrieT 10:52 PM  

Will be praying for you, Anita. We adopted our daughter from Korea knowing that she was suspected to be mentally retarded/developmentally disabled. Even so, hearing those words from the specialists here in the USA was very tough. I cried too. Holly did not have the kind of rough start like Bright did, but she didn't come to us until she was 4 and those first years have left some scars for sure. It sure complicates things when you are dealing with so many issues and a complicated early history.

No answers here but sending cyber hugs and will keep praying. You are not alone. We are walking this walk too.

Carrie T. - mom to 4 from Korea

Sammie 10:53 AM  

It's so hard to get a diagnosis that affects our kids future. Your right,he's still the same Bright. It's hard for the parent though who wants so much for our kids to know that his life will not be the one we had hoped for him. My son, adopted from China came with some additional special needs. Initialy I thought he would catch up,that he was just mildly impacted. Turns out that was not the case his IQ is low and the hardest part is he also becomes very aggressive at times and has some serious behavior issues. You will find a new group of Mom's who will be your support and understand and guide you as you parent Bright. Having other Mom's who "get it", makes a huge difference. For now allow yourself time to grieve, and know that you will find a new way of being the family you were.

Rachel 10:22 AM  

I know this comment is coming in late but I was catching up on your blog and wanted to reply. We are one of the families who did decide to adopt children with cognitive delays who will probably not live independently. We set out knowing that about both of our girls upfront and we are fine with it.

However, I do think there is a huge difference between CHOOSING this - and having time to get used to the idea - and having it thrust upon you. Even for us, we always said cognitive delays were ok but we didn't feel equipped to deal with autism. So Sunshine's diagnosis of autism (in addition to her down syndrome) has been really hard to accept. We were prepared for DS, not so much for the autism. But, we know without a doubt that she was supposed to be part of our family and we're glad that God "hid" the autism from us and others so that we would not be scared away by it. She is definitely our child and we will find a way to deal with the autism . . . but that doesn't mean I don't grieve that diagnosis. It's really, really hard sometimes.

I feel for you as you work through all of this and what it means for Bright. I'm also thankful that he is in your family (where he obviously belongs) and where God has amazing plans for him!

Rachel 10:23 AM  

Oh and I also forgot to mention that we have a similar situation with Aimee where I am her grounding to the world too. I am definitely her "person" and she needs me in a consuming way that I don't see with my other kids. Sometimes it's a bit overwhelming to be that person for your child, isn't it?