Just a quick post tonight to say thanks to every single person who has commented or emailed with ideas and thoughts about Kenny's challenges. As this is blog is a resource for others with adopted kids, I try to be as honest and open as I can be, and to share what we learn Maybe others out there are experiencing the same issues and we might be able to offer some sort of comfort, answers or at least comraderie as others recognize their own children in the descriptions of ours.
Sharon did that for me when she commented on the last post. She has a child from Kyrgyzstan who was also adopted older and is describing EXACTLY the same issues as Kenny deals with daily, down to the episodic nature of it (while it all still exists on a low level all the time, it gets worse during prolonged periods of time). So was there something environmental that is affecting our kids? Or is it just the fact that both were institutionalized as young children? She describes brain mapping that shows dark spots on her daughters brain...exactly what we would expect if we had results for Kenny which is why we haven't gone ahead with expensive scans. It would tell us what we already suspect but wouldn't tell us HOW to work with it. Hearing this though confirms what we know in our heart to be true.
One thing I did learn that is helpful, thanks to another friend and long time LaJoy family follower, Catherine, is that if Kenny indeed does have Central Auditory Processing Disorder it qualifies him as disabled under the Americans with Disabilities Act. Trust me, if anyone has been around kids like this, they wouldn't even doubt that for a moment. Every time Kenny goes through this at its worst is when we wonder aloud to ourselves if he will ever be able to live independently. I am sure Sharon migh have the same doubts herself sometimes, seeing her own daughter struggle so mightily. Catherine pointed me to a web site I had not discovered which had a checklist for CAPD, which provided me with an "Of course" moment when I read it, just as I had immediately upon reading the Infant Reactive Attachment Disorder Checklist on Christmas Day all those years ago as we were trying to figure out for sure what Josh was dealing with.
For those who mentioned Dr. Gindis and pointed me to his web site, thank you. We already had Kenny assessed there when he first arrived home and were told what we see to be true as well...that Kenny's cognitive skills were obviously delayed but that he thought Kenny's intellect was such that he could definitely go to college one day if that were his path. We see the same thing, if we can get this under control. I did find the link someone sent to Dr. Gindis' article on CAPD helpful, and will be printing it out for more review and to provide to anyone working with Kenny in the future.
I am so appreciative of this little community here, for all of you who care and throw out ideas. Many of you know how puzzling some of these things can be from working with your own kids. No one in school districts really knows what our children have lacked, what they have experienced. YOU are my experts, for the experts we have access to have never seen internationally adopted kids other than perhaps once or twice in their careers. Living where we live limits us in ways those in large metropolitan areas are not limited, and I need my best resources to provide me with info I can't get from those who should be able to help. There IS no better resource than you parents who can say "Oh yea, we had that happen!" or who have done as I have and stumbled upon info somewhere along the line in pursuit of answers for your own children.
Kenny appears to maybe be coming out of it today, we will see what the next few days hold for him. Josh didn't have a nightmare last night, so progress on that front too. OK, so he sleepwalked, but at least he wasn't screaming in terror! Hahaha! Funny what we define as "progress" when we are going through periods like these. Olesya is working hard to voice her opinion more, even if it is very difficult for her, so I count that as a semi-victory. Angela is feeling pride in having painted a lot today, and Matthew is holed up happily creating a working Lego pistol with an internal mechanism that somehow uses cogs and rubber bands. Don't ask me, he tried to draw it out and explain it to me, and that was something I just couldn't visualize. I'll take a picture if he gets it to work...his creations are getting more and more interesting as he grows older. Last month it was a 3' cross bow that flung Legos 20' or more.
And I sit here with my leg propped up so my leg can heal, looking at some beautiful flowers that someone mysteriously dropped off at our front door sometime today. My knee is still somewhat swollen, and the skin injury is really bad, but thankfully it is feeling like nothing is broken inside. I think. I hope :-)
Somehow it feels like we turned a corner today. Not sure why or how. I was still awake at 3:45 AM when Dominick's alarm clock rang to wake him up, but soon finally fell asleep. Despite the lack of sleep, I somehow feel at peace tonight, more so than in a long time. Not sure why, not much has really changed but maybe God is just wrapping me up in a blanket and tucking me in tightly tonight, knowing how much I need to feel OK. Talking openly with Kenny about all of this, seeing hope in his eyes as he knows Mom is never giving up helps too. We are so lucky to parent him, and each of the kids.
We are so lucky to have so many caring people in our life. Blessed, blessed, blessed. It helps us keep on keeping on :-)
Sharon did that for me when she commented on the last post. She has a child from Kyrgyzstan who was also adopted older and is describing EXACTLY the same issues as Kenny deals with daily, down to the episodic nature of it (while it all still exists on a low level all the time, it gets worse during prolonged periods of time). So was there something environmental that is affecting our kids? Or is it just the fact that both were institutionalized as young children? She describes brain mapping that shows dark spots on her daughters brain...exactly what we would expect if we had results for Kenny which is why we haven't gone ahead with expensive scans. It would tell us what we already suspect but wouldn't tell us HOW to work with it. Hearing this though confirms what we know in our heart to be true.
One thing I did learn that is helpful, thanks to another friend and long time LaJoy family follower, Catherine, is that if Kenny indeed does have Central Auditory Processing Disorder it qualifies him as disabled under the Americans with Disabilities Act. Trust me, if anyone has been around kids like this, they wouldn't even doubt that for a moment. Every time Kenny goes through this at its worst is when we wonder aloud to ourselves if he will ever be able to live independently. I am sure Sharon migh have the same doubts herself sometimes, seeing her own daughter struggle so mightily. Catherine pointed me to a web site I had not discovered which had a checklist for CAPD, which provided me with an "Of course" moment when I read it, just as I had immediately upon reading the Infant Reactive Attachment Disorder Checklist on Christmas Day all those years ago as we were trying to figure out for sure what Josh was dealing with.
For those who mentioned Dr. Gindis and pointed me to his web site, thank you. We already had Kenny assessed there when he first arrived home and were told what we see to be true as well...that Kenny's cognitive skills were obviously delayed but that he thought Kenny's intellect was such that he could definitely go to college one day if that were his path. We see the same thing, if we can get this under control. I did find the link someone sent to Dr. Gindis' article on CAPD helpful, and will be printing it out for more review and to provide to anyone working with Kenny in the future.
I am so appreciative of this little community here, for all of you who care and throw out ideas. Many of you know how puzzling some of these things can be from working with your own kids. No one in school districts really knows what our children have lacked, what they have experienced. YOU are my experts, for the experts we have access to have never seen internationally adopted kids other than perhaps once or twice in their careers. Living where we live limits us in ways those in large metropolitan areas are not limited, and I need my best resources to provide me with info I can't get from those who should be able to help. There IS no better resource than you parents who can say "Oh yea, we had that happen!" or who have done as I have and stumbled upon info somewhere along the line in pursuit of answers for your own children.
Kenny appears to maybe be coming out of it today, we will see what the next few days hold for him. Josh didn't have a nightmare last night, so progress on that front too. OK, so he sleepwalked, but at least he wasn't screaming in terror! Hahaha! Funny what we define as "progress" when we are going through periods like these. Olesya is working hard to voice her opinion more, even if it is very difficult for her, so I count that as a semi-victory. Angela is feeling pride in having painted a lot today, and Matthew is holed up happily creating a working Lego pistol with an internal mechanism that somehow uses cogs and rubber bands. Don't ask me, he tried to draw it out and explain it to me, and that was something I just couldn't visualize. I'll take a picture if he gets it to work...his creations are getting more and more interesting as he grows older. Last month it was a 3' cross bow that flung Legos 20' or more.
And I sit here with my leg propped up so my leg can heal, looking at some beautiful flowers that someone mysteriously dropped off at our front door sometime today. My knee is still somewhat swollen, and the skin injury is really bad, but thankfully it is feeling like nothing is broken inside. I think. I hope :-)
Somehow it feels like we turned a corner today. Not sure why or how. I was still awake at 3:45 AM when Dominick's alarm clock rang to wake him up, but soon finally fell asleep. Despite the lack of sleep, I somehow feel at peace tonight, more so than in a long time. Not sure why, not much has really changed but maybe God is just wrapping me up in a blanket and tucking me in tightly tonight, knowing how much I need to feel OK. Talking openly with Kenny about all of this, seeing hope in his eyes as he knows Mom is never giving up helps too. We are so lucky to parent him, and each of the kids.
We are so lucky to have so many caring people in our life. Blessed, blessed, blessed. It helps us keep on keeping on :-)
3 comments:
I often thank Cindy for sharing her family and life with me and you. Now I would like to thank you, the readers, the adopters, the resource people, for being the source of inspiration, hope, support to Team LaJoy and to others of us who read and hope and love, but do not have any answers or know any resources.
Thanks to all,
Lael
Hi Cindy,
I had Khaily assessed for Auditory Processing Deficits this summer. A good friend of mine who is an SLP called her (with love) the "dumbest smart kid" she knows. She does have an APD but up until now it has had little educational impact, my fear is that it will in the future. Here is one of the suggestions the audiologist made... 1. The Learning Breakthrough Program by Dr. Frank Belgau is recommended for Khaily to improve interhemispheric integration skills. This “at home” program uses a variety of balance, visual tracking and motor planning activities to improve brain connections that can lead to improved processing skills. This program should be paired with auditory decoding (nonsense sound blending) and/or auditory sequencing activities. The program can be purchased online at www.learningbreakthrough.com.
I am not sure if this will be useful for Kenny but you mentioned something about getting both sides of his brain to work together.
Kim in Korea :)
I think someone else mentioned this in a comment the other day. I too wondered if the extra physical work your family has been doing made for a more tired Kenny. I know there is much more going on and reasons his brain works the way it does. I just wondered if the heightened symptoms might be from being over tired. Just a thought, as I know there are probably many pieces to the puzzle. If it were just simple to figure kids out, any kid. Add to the complexity of their brain and physical make up the effects of hormones, growth spurts, the amount of sleep or particular foods, etc, etc. We are certainly "fearfully and wonderfully made", as scripture says. God gives us the privelege and the challenge of trying to help each of our kids become the person they were created to be...without personal instruction manuals. Praying for some really good answers for you to know how to help Kenny. He must be one terrific kid!
Nancy in the Midwest
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