Saturday, April 21, 2012

Beautiful, Discouraging Day

Woke up this morning to the most beautiful spring day with no wind, which where we live is highly unusual for this time of year!  It was a good thing, as we had a full day planned with outside work to be done, and we needed to get a lot accomplished.  How we worked! While  Angela was off on her very first babysitting job for the morning the rest of us dug in, and I do mean dug.  We dug up dead shrubs, we raked globe willow branches until they created three enormous burn piles, we pulled weeds, we sweated!!

So what was discouraging?  Why was I near tears and Dominick frustrated beyond belief?  One word...Kenny.  The cyclical nature of his behavior is so hard to understand let alone describe, but it is clear we are on a downward spiral at just the wrong time, as we look forward to heading to Denver at the end of the week for a field trip to complete our Colorado State History studies.  We need Kenny to be alert and sharper when we are in a big city environment, for we worry about his safety.

I get many private emails and FB messages from folks who have adopted or are going to adopt older kids, and sometimes I blog more about Kenny and our challenges with his development because parents need to know what looks "normal" for kids from our backgrounds.  The fact is, they don't fit any mold, and I had a brief conversation with someone here in town this week who adopted an older child who has many of the same struggles we have.  It is important to recognize you aren't alone, that others too find themselves overwhelmed,  are left scratching their head, or just plan old tired of worrying.

Today, Kenny almost hurt Sunny as he was throwing wood on the burn pile.  I watched from afar as he looked up, saw the dog, and yet still threw the log.  He ended up catching her hind leg, and she squealed but luckily was unhurt.  I rushed over and asked him what in the world he was doing.  He looked at me blankly, and when I asked if he had seen the dog, he replied "Yea, I saw her." and then I asked the next logical question "Why did you throw the log then?" and again he gives me this totally blank look, hesitates and says "I don't know.  It just didn't feel like I could stop."  Now, you have to know Kenny to know he would never try and hurt a flea, let alone the dog he loves.  He just couldn't get his brain to kick in gear enough to register what was going on and what his next course of action should be.  So, of course, I chew him out knowing full well that isn't really going to do any good, but I can't let it go not commented upon.

Later, Matthew and I are driving back in the driveway after going to dump some stuff in the dumpster at Dominick's shop.  As I pull into the driveway and behind our house where I usually park, Kenny is off to the side walking our direction.  I swear I no sooner got the words out of my mouth to Matthew "You watch, Kenny is going to walk right in front of the car." then Kenny speeds up to try and cross in front of the van before I pull in.  He saw me, he just didn't recognize what the wise course of action should be for that situation...stop and wait for the vehicle.  I got out of the car and told Dominick in all seriousness that someday that child is going to end up dead, and that I can't watch him every moment of every day or follow him everywhere he goes to keep him safe.

Based upon information we received from the special education evaluation, we learned that Kenny has exceptionally poor/undeveloped planning skills.  He can not look at something, and plan how to attack a project.  It is different from not seeing what needs to be done, he is good at that.  It is that he can not, for the life of him, figure out the order in which things should be done.  To try and help develop those skills, we are to sit down and have him walk through a project, even the simplest ones, and plan it out.  Yes, even such things as "What do you need to do every single morning?" We can help walk him through like this:

A)  What needs to be done here, what is the big picture?
B)   How are we going to accomplish that, generally.
C)  What are the specific steps we need to take to do it, in order.
D)  Summarize it.

Everything.  Every day.  All day.  Man, did she get it right that this is a huge problem, and I am totally kicking myself for not "getting it" myself, as it is very clear.  So, we are working on trying to institute it in our every day lives.  As the afternoon drew on, I had Kenny come in the house, and sit down with a pencil and a piece of paper.  I had two easy tasks for him to do, one to rake a 10' section of leaves tucked under the side of the house...simple...and the other to move some kindling back to the woodpile...simple.  He starts to write the steps, it takes him 10 minutes with my help.  10 minutes. He can't spell "rake", he hesitates over "woodpile", he takes 2 minutes to try and write the word "garbage".  Finally, we get the list written and he goes outside, I tell him if he gets stuck or lost in what he is doing to pull out his list, but to try and do both tasks on his own with no help.  I specifically tell him to move the kindling, which is a rather large pile, with a certain bucket because it is the right size for carrying.  I let him go, and he starts out just fine, I see him pull out his list and am glad to see him using it.

30 minutes later, he has filled a super huge container...not the one I told him to use and that he wrote down he should use...to the brim with kindling.  It is so heavy he can't possibly move it the 30 yards or so he needs to move it.  He struggles, he pushes, he shoves it and I stand there watching.  I tell him to stop and look at me...I am saying that ALL the time these days so I know I have his full attention.  He looks at me and I ask him "What did I tell you to use to carry the kindling?"  he answers correctly, that I told him to use the smaller container.  Believe it or not, as he answers me, he still totally isn't "getting it", and finally after I stand there silently for 2+ minutes, he hits himself on the forehead and says "Duh!".  I then ask him what his options are at this stage to complete the task, and he does come up with good ones.  He can ask for help carrying it or he can reload it into smaller containers.  He gets help and the job is finally done.

Because there really is nowhere for ME to  get help, and walk into the garage and look at Dominick and want to bust out crying.  He shakes his head and says "I don't know what we are going to do."

Kenny is: a great worker, super kind, funny, sweet natured, courteous, helpful, diligent, and a million other adjectives.  Kenny also has a brain which is very, very damaged.  No getting around it.

I talked to the other kids this afternoon and apologized, for the fact is we spend an enormous amount of time with Kenny compared to them, and it frankly is most often negative attention because it is constant correction.  Poor Angela is often slowed down in her school work as we have she and Kenny grouped together for certain things, which is appropriate based upon some skill level, but Kenny's learning disabilities slow him way down and she is so very, very gracious, so patient...it almost brings me to tears to think of how she could be with him and yet chooses to be kind.  So I tell the kids this afternoon while we are still outside that I am sorry that Kenny's needs sometimes just get in the way, and that I recognize this must be frustrating for them just as it is for us...and Kenny too.  Having witness what happened with Kenny walking in front of the van, they all said in one way or another "But it's better than having Kenny killed or have a bad accident.  We want him safe too and we know you have to do what you do with him."

Still, so often it isn't fair to them and I know it.

We know some of this might eventually work itself out, or we at least are trying to believe it.  We are so very, very grateful for help from an anonymous person who has offered some funding for things Kenny needs, and we were able to buy him an iPad this week in the hopes that we can find apps that will help provide speech practice, memory work, expressive language development, etc.  So far I have found several but there are so many that even searching is overwhelming.  We are going to have him carry it everywhere with him, once we get it all set up, so he can take notes and create reminders, always check a calendar, have several kinds of "to do" lists that can be reused daily, etc.  Maybe this sort of support will help, we sure hope so.  If anyone has any suggestions for helpful apps for the kinds of issues Kenny struggles with, PLEASE email me!  The sheer quantity of them makes it a little difficult to narrow down searches.

We have to continue to remain hopeful, and not get too discouraged.  Some days that is so much easier than others. On days like today, it is almost impossible to see an outcome where Kenny is happy, productive, and most of all, safe.  I don't want him hurt, I don't want him hurting others.  I also don't know how I can be "on" 24/7 to the degree he probably needs to make decent progress.  Right now it feels as if every single thing, all day long, has to be explained and broken down...and even then it doesn't always help.  Olesya is much better, but she too often has similar problems, and Angela does once in awhile, but as I told Dominick when he pointed that out to me today, at least they are not a danger to themselves or others.  They may need help developing logic skills, but it is coming along and we are seeing progress.

What others can't possibly realize is how illogical much of what older internationally adopted kids do actually is.  There is an inability to sometimes (or very often as is the case with Kenny) to "connect the dots" in ways that come naturally to most of us.  As you are often looking at much taller kids with mature faces and bodies, it is difficult to have appropriate expectations for them.  This is not immaturity, this is lack of life experiences that are simple and usually occur when very young, in toddler years, that help develop these skills. Missed opportunity and missed interaction with an engaged adult can not be easily made up for in the 'tween or teen years.

Tomorrow will be better, I know it.  Tomorrow is always better somehow, thankfully, or it'd be pretty darned hard to hang on.  Kenny is an extraordinary young man in so many ways.  Somehow, we're going to make it.  I just need to remind myself of that over and over on days like this.  That, and maybe a good cry once in awhile might help too, but I don't have time for that, do I?

OK, off to the kids' art show, where we will forget all of this and celebrate a successful year of class...and sadly our last as the school is closing, much to our dismay.  Deep breath, we have years ahead of us to keep working at it, right?

9 comments:

Anonymous said...

No advice--but thank you for writing about this. Your experiences describe my son to a "T". He is 7, adopted at age 5. We adopted him together with his bio sisters (now 9 and 3). He is a terrific kid; kind, loving and a hard worker. But he also struggles to put things "in order" and getting him to complete what seems to be a simple task can take hours. We are making it though--and so are you. You are a terrific, patient mom!
~Kim

Joyce said...

Two quick thoughts which mya be totally unhelpful - but have you tried getting him to draw the instructions with arrows as opposed to writing??
My other thought is have you looked into any listening therapy for brain organisation - I know with Central Auditory Processing that was offered as an option for my son, but it ended costing way too much esp as the CAP diagnosis wasnt confirmed and Ry had more sensory processing issues. We do a different listening therapy for him which really has helped him amazingly for brain organisation.
You might find info on that from vitallinks.org.
Joyce

Joyce said...

vitallinks.net is the correct one

Anonymous said...

Cindy -- Hi!
My heart goes out to you! ... and to Dominick! You've taken on such a huge task by opening your arms and your hearts to these children! I can see where there would be days like today, when it all seems totally overwhelming. By the same token, you continue to impress me with your dedication and your skill and your compassion in working with all your children, not just Kenny.
Lately, I've been facing some things that have seemed pretty anxiety-producing to me, and I've begun practicing trusting in God "just for today." "Just for today," God will walk me through. "Just for today," God will give me the strength and vision and capabilities I need. .... and so forth. I've found it helpful this way to concentrate on just what's in front of me, rather than getting overwhelmed by looking at the big picture. Perhaps there may be some help for you in this as well, so I offer it up to you with love and prayers.
Blessings, Cindy, and God's shalom!
Kaye

Anonymous said...

Woke up from the couch to check some blogs before heading up to bed. Read of your frustrations and fears for Kenny and thought of something that may or may not be an option or a help. Not a solution to the organization of thought for Kenny, but maybe a bit of a "break" now and then for you. I know in some states, some can get the help of a PCA for their special needs children. Personal Care Attendant, I believe this means...though I'm not sure. A "helper" is hired to spend time with their child, doing activities together or spending learning time together, etc. I know you'd want to be extremely careful in who that would be, but often the time is spent together in your own home. I know this would still require much thought and planning on your part, but it might also give you some time to spend on the other kids' schoolwork while a PCA spent time with Kenny. These families receive some funding to pay for the PCA, and in some cases, their own older children (older teen or adult relative) are paid to spend the time. Just a thought, though I know you also have many adults in your lives who might spend some one on one time with Kenny anyway.

We don't struggle nearly to the extent your family is with some of these issues, but I can relate to older adopted children not having what often seems to be "common sense" concerning simple things. I know in my head that it comes from their lack of experience and even cultural differences that caused these gaps. But I can relate to your frustrations and imagine how hard it must be when these gaps are effected by even more damage done in early years.

I suspect now that some of Kenny's struggles have been better explained to you, you might be noticing them more. That and the fact that as your other kids mature, you see the differences even more. That surely must cause more worry and concern, as other kids grow further beyond him at this point. Keep on doing what you are already doing for Kenny...and all that you continue to search for to help. That's an enormous task, I can tell from your descriptions. In the meantime, I will pray for your encouragement and for "break throughs" for your amazing Kenny. The love and help all of you pour out on him is helping him is helping him so much towards being able to love himself and give himself the space to grow, make mistakes, and learn. Without that, who knows what his own frustrations might cause him become?

May God bless you with the ability to "take heart" and to continue to persevere and to advocate for Kenny.

Nancy in the Midwest

Anonymous said...

Sorry for the late night typos! Time for bed, but I'm glad I read your post and will be thinking of your family and praying for all of these concerns.

Nancy in the Midwest

Anonymous said...

Have you tried incorporating lists of tasks into a narrative story? The brain processes narrative differently than other info. Maybe you need to make up a story about Kenny and what he needs to accomplish. Embellish with some vivid detail. Might kick his brain into a different mode. Sorry, no expert, but know that there is brain research to support the use of stories with even "normal" kids--helps them access the organizing parts of the brain. Daniel Siegel discusses this in his book, The Whole Brained Child.

No magic bullet I am sure, but may be worth a try?

Bridget said...

Hi Cindy,

I don't have any advice for Kenny. My guys are almost 5, and came home a year and a half ago at 3 and half. One of my guys does display an almost lack of understanding dangerous situations. However, just today, his twin was the one I completely lost at the Zoo. That was a first. Some nice woman took him to guest services just as we got there, and we both burst into tears. He got away from me, and we weren't separated for more than 10 minutes - but the longest 10 minutes of my life.

Keep in mind that my guys are much younger, but for speech therapy, we have downloaded "Milo" A speech therapist developed the program. Honestly, we only downloaded the free app, and haven't downloaded the rest. The number of action words is huge.

For math, my favorites are a program called Bugs and Buttons, but it was $5, I think. The other math program is the Umizoomi math program.

Good luck. I read your blog a lot.

Bridget

Anonymous said...

You have set me to wondering--again--about the mysteries of the brain. I can site examples of when I made decisions--very poor ones--that mimic Kenny's and had the same feeling that I couldn't stop the runaway train of my brain. Since I already know about myself that I have brain biochemical defects I chalk those decisions up to that. As far as I know there are no physical defects. Strange and mystical thing, the brain, probably one of the most complicated, awe-inspiring
creations in this world if not many others. Perhaps in Kenny's lifetime there will be discoveries that will help him compensate for some of his challenges. That will be some of my prayers for him, and for you, Cindy, peaceful sleep to renew you, support and resources, the continued love of family and friends (a given, but worth praying for), and God's continued love and guidance.

Blessings on you,
Lael

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