Saturday, July 14, 2012

Looking for Some Truth (Have you met Bright?)

One of my friends posted THIS link to a blog about the things parents of special needs kids go through (how we're feeling, what we might need, etc.).  I thought it was pretty good.  Check it out.  Ironic timing, really, as I was just getting ready to write this post about Bright.  Sweet Bright.

When Bright came home at 20 months old he had recovered physically from near starvation.  "Malnutrition" isn't a grave enough word.  He was starving.  Maybe 8 pounds at a year old.  But he survived, my boy.  And he was a fat butterball baby--even TOO fat at around 35 pounds but the length of a child in 6/9 month clothing!  We had every hope that his mental recovery would go as well as his physical recovery.  It didn't.

At around 3 years old there were little differences that we began to notice.  Very small things that could easily be explained away.  All three year olds hit.  Lots of three year olds love sweet things to eat.  Tons of kids get "lost" in front of the TV.  Don't they?  Constipation is common, but I suppose we always thought it wierd that he held "it" for 7-10 days, seemingly because he was scared to poop.

Then, 4 years.  Then 5 years.  Now 6 years.

Everything just continues to progress in the wrong direction.  Bright is going to be 7 years old in 3 months--the unspoken divider between "little kid" and "big kid."  A little kid can get away with fits in public to a certain age.  They can do things that aren't socially acceptable and people will giggle it away.  But at 7 years, no more.  It's not okay.  Actually, I think we're already there with Bright.  It's already uncomfortable in public.  I'm pretty positive people can see he's "different."  It's not just us anymore.

Bright is my most affectionate child.  He will cuddle me and kiss me all day long if I'll let him.  He is the same with his dad.  A few days ago I was watching Little House on the Prairie with Kendi and Bright wrapped in my arms.  Across my lap both children intertwined their fingers and held hands.  Best friends.  Really, Kendi is Bright's only friend.  He can be very affectionate with people he loves.

But the outside world?  It's the world outside this family and this house that he doesn't deal with so well.  If a stranger talks to him he buries his face in my bosom, or has an outright fit.  He can't make friends with other children his age.  There are 2 other boys on our street his age, but they knock on our door to play with our 10 year old son rather than Bright.  On our recent vacation Bright turned into an absolute mess by the time we got home, having complete meltdowns several times a day for no reason we could figure out.

We KNOW that Bright deals with major trauma issues as a result of the extreme neglect he suffered his first year.  We also know that he has cognitive impairment due to the starvation.  That just doesn't seem to be every piece of the puzzle.  Or is it?  We're not sure.  But for the first time we're considering whether he might be on the autism spectrum.

If you've met Bright, can you give me your honest opinion?  What did you see in our little boy?  What were your first impressions, being someone that doesn't know him intimately?  Does he come across like a typical little boy?  Or "just" a mentally impaired little boy?  Or an autistic little boy?  What would have been your best guess if you didn't know anything about him? 

I'm NOT asking you to diagnose my son.  That is for the work of professionals.  As his mom, I can't step far enough back from the situation to see him as anything but Bright, my son.  I can't imagine what others see when they meet him.  It would help me to have some honest feed back.  It won't break my heart to hear "bad" stuff.  I just need TRUTH, whatever that is.

We've just heard word of a new doctor here in our area that works with kids who have a variety of issues like Bright has, so we're hopeful we may have a new resource for answers soon!  Honestly, we're just so tired of not having answers.  If he was diagnosed on the spectrum, fine.  That would give me somewhere to go--something to work with to get him the help he needs.  It's not knowing how to help him that is so very tiresome.

Below I'm posting two photos taken a moment apart, at the Akwaaba Gathering.  The first photo is so great!  I love it!  His eyes seem to be connecting.  He looks so "typical," right?  The second photo is what Bright usually does in photos these days.  He's somehow disconnected.  He's looking sort of "through" the photo, or down, or away.  I have to trick him to look AT the camera now.  It doesn't come naturally to him.  This is the perfect example of what has happened to him as a little boy.  When he was a baby and a toddler, it was totally natural for him to smile at the camera and take photos. =-(




FullPlateMom 6:12 AM  

I can't answer about Bright. I'm so sorry. I didn't spend a lot of time with him at the Akwaaba Gathering, but I can hear you asking all the same questions we ask about Juliana every single day.

She will be 6 in October and comes from a lot of the same background as Bright. Foolishly, in Ghana, I thought she was chubby because she was was so small, well fed and so loved (she was the "baby" at the orphanage). That's what I was told. Nope. She came home and was diagnosed with kwashiorkor malnutrition. She has horrible PTSD that lead to major melt downs about things I'll never understand (her triggers are a huge mystery to me) and she now carries a diagnosis of Institutional Autism/Aspbergers.

Having that diagnosis and working with our local school system within the confines of that diagnosis has made a TON of difference. She has a 504 plan, gets the OT, PT, Speech she needs (when she needs it) and she's taught by Special Ed in a way that lends itself to her style of learning. I know you home school, but my understanding is you can still get intervention through the school system. We also do play therapy.

We started therapy when she was three. When she's in a good place, we'll stop for awhile and as soon as I see her sliding back into her trauma shell, we go back again. I have read, reread and read again my copy of Karyn Purvis, It's falling apart, so I finally bought it for my Kindle.

These are probably things you're already doing, but as another mom, I just heard the sadness in your post and mostly wanted to let you're not alone. This is so hard. There isn't anything any one of us wouldn't do to just 'fix' our kids. If I can help in any way, please feel free to email me. Hugs Anita.

The C Family 7:48 AM  

What a difficult situation. I hope you can find some answers soon. Praying for you and your family.

Rachel 8:27 AM  

I haven't met Bright in person but wanted to share a few thoughts that came to mind while reading.

What you describe does sound like it could be autism. I would get an evaluation. It's hard to consider that possibility but in some ways it's easier to know. Knowing that Sunshine has autism has helped more than I can say. It opens up a whole new world of interventions and support. It helps us look at her differently and understand why she does what she does. It's made us more compassionate towards her obsessions and stims and her struggles around people. I am sad that she has autism but I am glad that we know about it. It has helped us go forward and helped us function better as a family.

I also wanted to mention sensory processing disorder. Many kids with SPD appear to have autism. They may have repetitive behaviors, struggle in social situations and melt down over changes in routine. Many kids with autism have SPD but there are many kids WITHOUT autism who also have SPD. Sometimes kids are diagnosed with autism when they actually have SPD. It is definitely something to look into. Find a good occupational therapist who has experience with sensory issues. Ideally you want him to go to an OT clinic because they will have the good equipment - swings, bikes, etc - to use during therapy. A good OT will also be able to help you develop a "sensory diet" which is a list of things to do each day to help him regulate his sensory system. I have been amazed at how much this sensory stuff helps my kids (both with Sunshine, who does have autism and with Ace who is very typically functioning and socially adept). An OT friend of mine who is also an adoptive mom says she has never met an internationally adopted child who doesn't have at least some sensory issues - and that most would benefit from sensory therapy.

You'll be in my prayers as you try to sort this out. Unexpected special needs are hard to deal with - much harder than the ones you know about and prepare for you. Hugs from a mom who's been there.

Heather 1:19 PM  

Hugs Miss Anita. I know it's so, so freaking hard. Praying for you and your precious Bright.

Sammie 10:21 AM  

My son came home with additional special needs that were cognative related. It takes time to put all the pieces together. Since every one knows about autism that is often peoples first thought. What you have described does not sound to me like autism. Knowing your sons early history it sounds much more related to his history of extreme malnutrition causing aquired brain injury.

This can cause low IQ and many other issues depending on the parts of the brain that are affected. I have found that getting OT, PT, and speech evaluations along with seeing a really specialized neurologist helped to finally put the pieces of the puzzle together.

Several of the neurologist we saw were useless but finding one with a really good reputation for working with kids and families is what you are looking for.

Being in a special ed program at our school has also helped my son. I know you home school and I don't know about services at your local schools. My son needs to be in self contained class rooms and has had some amazing teachers who have really helped me to see ways to work with him.

I know its hard when our kids have extra needs that are so challenging for them. I have learned the most by net working with other Mom's through special ed at school, through local programs for DDD, like the ARC which they have in most states. There is a lot of support and resources out there, and its what you and Bright need on this journey. I know it hurts to see our kids struggle, but information and finding services and support are what has helped to get me through.

Thinking of you,


Ericka 7:31 AM  

Oh Anita, I can't believe Bright is going to be SEVEN!!! I remember when you were stuck in Ghana trying to bring him home and the subsequent flight!!!!
Praying you get some answers and peace and the strength to move forward. Hugs sweet momma!

Ericka 7:40 AM  

Anita, something I just thought of....I read somewhere that the brain/body 're-wires' itself (very lay-man speaking) around age 8 and again at around 13. There are 'windows' to help the brain heal in these windows by continuing positive experiences and I don't know how to explain this, but with 'fatty' foods as the brain needs a certain kind of fat. Ugh. I know I"m not describing it well, but I'm sure a few google searches can help??? The re-wiring has been talked about on the RAD sites a lot. It doesn't sound like Bright has RAD, but trauma, malnutrition, institutional setting can lead to all sorts of stuff (I know you know this). Also, have you thought of maybe putting Bright in the public school for some things (with a 504, etc etc). I think it depends on the school, but here, there is a family who homeschools, but also sends her kids to the public school for PE and a couple of subjects she can't cover at home. The kids get the best of both worlds in a way - socialization of school and homeschool. I don't know, just some ideas :)

Anonymous 8:30 AM  

Hi Anita-
I have son from the Philippines that sounds very much like Bright-severe malnutrition and all the other stuff that goes with it. He was diagnosed with autism when he was about 6-7 years old. In the meantime, I have 2 more from disrupted adoptions who were recently diagnosed Aspergers..all from different professionals in different places. Our road shall be filled with twists and turns...and unsuspecting ride. But, like you, it is OUR ride and by the grace of God, we will journey together...
Just words of hope and matter what, knowing will help and you will ride the ride.