Wednesday, November 09, 2011

Fighting the Good Fight...and Losing

Today was not the best of days, for multiple reasons.  I am trying to remain upbeat, I am trying..well...not to cry.  OK, so I failed at that one earlier today, tears of frustration won over.

First of all, feeling this lousy has not helped, and I don't have my usual fight in me...although I think the audiologist from the school district might beg to differ on that one.  As of 6:00 PM I am now on steroids, antibiotics, and 3 other meds for this asthma gone nuclear.  The MD said he didn't know how I was still walking around, and though it wasn't presenting as pnueomonia...yet...he would lay odds that within the next 24 hours it would be.  It has been about 6 weeks or so getting progressively worse, and as I look in the mirror at the bags under my eyes, they pretty much tell the story of how exhausted I am.  So, no preaching in Silverton, no swimming in Delta, no youth group meeting.  Nothing but bed and Netflix for the next several days.

Bright spots?  Someone delivered flowers anonymously yesterday which was lovely and has me wondering "Hmmm...who?".  The kids are doing laundry.  My hubby went back to Walmart when they messed up the presecriptions so I could rest.  My knee is gradually getting a little better, even if it will take weeks to feel back to normal.  Josh didn't have a nightmare last night again.

On to the most frustrating, anger inducing, circular situation I have ever been involved in...other than the time when we bought a small boat years ago from a widow and the Department of Motor Vehicles insisted I get the signature of her deceased husband.  They finally gave up when I asked in a raised voice loud enough for all to hear "OK...so you want me to exhume his body to get his signature??" ...but I digress...

I heard back from the audiologist at the school district.  They declined to test Kenny.  Why?  Oh, not because they don't think he may indeed have auditory processing disorder.  No, that would make way too much sense. 

They declined because he is not a native English speaker, and because his IQ is 3 points too low.

Yea.  You read that right, although I know no one here will react with the same feeling of being absurdly pushed aside as I did.  I was told that EVERY non native speaker has what is essentially an auditory processing disorder, and was even kindly given an example of how a Japanese person will forever say "Flied Lice" instead of Fried Rice.  I kid you not, that was the very words used.  Because Kenny is a non-native speaker and can't be tested in his native Russian, his results will NEVER be considered valid.  Oh yea, and once again they basically told me my kid is too stupid and that would effect his results as well.

Can you see why I cried?  This is so darned circular that I can't even give voice to it.  We can't get him tested because he didn't speak English as an infant, and his IQ tests are low.  His IQ tests are low because he can't take verbal directions well or remember them.  His English skills will only go so far because he can't process what he hears correctly.  But we can't get him tested because...yada...yada...yada.

They also have no idea what is wrong with him.  They give us no clue, and no offer of additional testing or special services help.  Oh yea, they'll mail me a little info.

Dominick and I sat up talking about this as I hacked and wheezed with my knee elevated.  What a picture.  What do we do now?  The school route is out.  I don't know how we can afford testing on our own, it is in the thousands of dollars, and then it may only confirm what we already suspect...but we also know it is not the only thing going on.  I have to learn HOW to teach him, and I need to know if indeed I am barking up the right tree or way off base.  Notice, however, that the audiologist never said throughout our lengthy conversation that Kenny likely did not have ADP based upon my preliminary answers on the initial eval, only that they would not test for it. 

By the way, Chris J, my Colorado friend, can you email me directly about the Able Kids Foundation you recommended?  I did speak with them today, but have some questions and wanted to chat a little about it. 

I guess I am going to once again self-educate and see what I can learn over the next few weeks about APD.  There are two schools of thought, it appears.  One is that you manage and come up with coping strategies, and another is that there are ways to find work arounds in the brain and re-wire.  So far we have not seen much luck in that end, and both the audiologist I spoke with today and the Foundation mentioned above think along the "coping strategies" line and have little faith in any remedial efforts for long term success.

But what else am I missing?  This is not the entire puzzle, only a piece of it.  How much money do we spend in pursuit of possible answers?  How much will be wasted because we don't have anyone knowledgable enough to steer us?  Why do we parents have to go this alone, and not receive the services our tax dollars pay for? 

Bright sides?  Kenny is worth fighting for.  Kenny IS very intelligent, even if on paper he doesn't look it.  I am dogged in my pursuit for help for our kids.  I don't have ALL our kids with these issues.  I am smart enough to do a lot of research on my own, even if time is hard to find.  I am working with him everyday and that has made me an expert on Kenny LaJoy which helps eliminate some things quickly.  We ARE making a difference for him academically and he is light years ahead of where he was a year ago even if he is not at all where we wish he were for his age. 

I know I am so beat up right now that I am not my normal self, and that makes it all worse.  I am going to mull it all over, make more calls in the next couple of weeks, do some research and see what I can come up with.  Since I will be laid up the next few days I can research online and see what else I can come up with. 

And then, I will trust God will supply us with direction.  What else do I have at this point?  And the truth is, sometimes it takes getting to this point where you are so low that you finally hear God's leading anyway.  So...I have officially arrived at the bottom, God, can you lift me up a bit?  Can you help me keep my anger in check? 

Can you help me help my son? 

16 comments:

Anonymous said...

Hi, Cindy! You are so speaking my language tonight! That probably doesn't surprise you, given my situation with Al and his driver's licensing. You're worse off, though, because of this budding pneumonia, or whatever it is, and your knee. My heart goes out to you! And my prayers that God will enfold you and uphold you through all this dark, dark valley, that answers will be forthcoming, and that you can find the way necessary to work best with Kenny -- and each and every one of your children.
Love, blessings, and shalom!
Kaye

My Girls R Angels said...

Praying for your strength as you figure out the next step. I have faith that you will find the info you need either online or in books that are recommended. Keep up the good fight, Cindy and as always, thank you so much for sharing your journey!
Blessings,
Theresa
Rockledge, FL

Anonymous said...

I'm also praying for encouragement and ideas to be sent your way, Cindy. I'm still not certain that your school district isn't responsible for testing him. Even though you homeschool, I thought you were still "under" the district's supervison or whatever word I'm searching for. Do you have AEA in your state (Area Education Association)? It would seem they are responsible for services. I know there are lots of hoops to jump thru, as two of our kids have IEPs, but I can't believe they aren't responsible. Or how about the state? I'd contact someone at the state level and ask more questions, as surely there are state funded programs set up to help assess students. I'm sure you're tired of phone calls...plus not feeling well at all. You don't need to do this all right now when you're so beat down.

I guess I'm just saying not to take one person's opinion as to whether the district has some obligations to Kenny or not. You pay taxes in support of your local school district, you deserve some services.

Take care of yourself. I'm sure your kids are enjoying serving you, as big as their hearts are!

Nancy in the Midwest

Anonymous said...

I HATE HATE saying this, but seriously--at this point I would threaten the school district with a law suit. Read the Americans with Disabilities Act (you probably already have, but just to see if there is something in there specific to testing, academic provisions, etc. that applies to Kenny). Call the ACLU if you have to. You are right, Cindy. You are right in what you are doing for your son.
All the best,
Kim

Anonymous said...

Hey-
get better soon!

I left you a message on your cell. OMG - that is the biggest bunch of BS that you are getting from the school but you are not the first. It made me cry and mad to read it.

Hugs
cat

Anonymous said...

PS. get EVERYTHING in writing from now on, document the dates/content of discussions and tape every meeting. Just doing that may help get more but if not you will need it to fight them.

cat

Susan said...

Hi Cindy,
I'm sure you've thought of this or have done it, but have your tried the international adoption clinic at Children's hospital. I think insurance will cover some of the tests there. We never went but I know someone else who did and found them very helpful.

I hope you feel better soon.

Susan

Corinne said...

Make sure you get EVERYTHING in WRITING with exactly what they are telling you. You usually have to really step on people toes to get services that are needed for your child.If you are not getting any where at the local level you need to go to the state level which can give you names for special needs advocates and get after the district to follow all laws in your state.Once you start writing letters and have advocates help you the district must respond within a certain time period .I would strongly getting an advocate to help.They know all the laws and what is required to give.Budget cuts is usually what denies a child rather then their actual need. We are in California and have to do this and did get results.Wishing you a quick recovery soon.

Anonymous said...

I'm not surprised. When I had my oldest daughter tested years ago (she arrived from China at 3 yrs old with a cleft lip and palate), the testers themselves told me "do not say that she has ever spoken anything but English, or she will be rejected for speech therapy on the basis of not being a native speaker. And they will try to place her in ESL classes." I was thankful for these testers who told me this, who knew how the system worked and how I could pre-empt it right from the start. Get some sleep and watch some movies and then you'll be ready to get right back in there and fight like a mama grizzly.

Elizabeth J

Anna said...

first and foremost, get rest. Asthma, bronchitis pnemonia= decreased oxygen= fatigue, irritability.....
Everyone will be okay while you heal.
Im hoping that with the steroids, antibiotics that you are also on an allergy pill and inhalers. Since it has drug on you might want to see an allergist or pulmonologist if this round doesnt get you well??? I wonder if church family/friends could help with meals etc so you can really rest? Praying for you. Been there done that. Keep some quiet praise music playing in the background if you arent already to settle your spirit. I know how restless I get when bedridden!!

Anonymous said...

Go to www.wrightslaw.com and see if there is anyone there you can contact. This is a website that is all about parents fighting against school districts to get their children the help that the district is required to provide.

Elizabeth J

Anne said...

I feel your pain Cindy. I was told the same thing when I tried to get my kids tested by our local public school. They actually did test my oldest daughter, but declined therapy for the exact reason they gave you. They told me that they would re-test her in five years... she was 9 years old at the time! Like I was going to wait until she was 14 before I got my child some help!

We ended up going out on our own to find resources - and we have had to pay for it all out of pocket, WHICH I am more than happy to do if it gets my kids the help they need. But I know that isn't an option for all families.

Our audiologist is Dr. Jack Katz (email is jackkatz@buffalo.edu) - he is considered the 'father of APD'. Most kids only need one round (15 sessions) of therapy to get their auditory processing going. Our 2 oldest kids' APD was so severe that we are getting ready for our 3rd round. Email him, he may know someone in your area who does APD therapy. I believe he also has some at home excersises people can do.

I, myself, have been considering another at-home program called "Hear Builders" (you can find it on the Super Duper website) for my youngest daughter. She has a milder APD.

I know that legal action has been advocated by some of your commenters. I looked into that option myself a couple of years ago. I came to the conclusion that I couldn't wait around for "the system" to correct itself (if it ever did) while my kids continued to struggle with APD and other learning disabilities. I instead put my time, energy and money into finding alternatives to the public school system. You are already doing that by choosing to homeschool Kenny.

We also send our older 2 kids to a private special education school. The school has another division to it where they just do testing for learning disabilities and therapies (or referrals to doctors) for learning disability related disorders. The testing is not thousands of dollars, but you do have to do it in person. I think the testing cost us $600 per child. They call themselves Restored Hope Remedial Services and they have tested children from all over the US.

Email me if you have questions amverhulst@yahoo.com

-Anne V

Kelly and Sne said...

Wow - I can imagine how frustrated you are. I am just starting on the treadmill of getting services for our daughter and am already frustrated (I also think that she is smarter than people give her credit for but she isn't verbal yet and is highly distractible so it is hard to tell). That said, you REALLY need to take the time to take care of yourself right now. You can't do anything for anyone else unless you are well. At the very least, spend your bed rest time surfing the web. But also get your sleep and GET BETTER! Things will come together for Kenny - with your persistance and the strength of the community - keep the faith!

Tammy said...

So sorry you are going through this right now. Know that you are not alone - we are all praying for you and many of us have been right where you are right now. It feels hopeless and you feel so powerless not being able to help your child. And ever so often this rage just engulfs you. We know it shouldn't be this hard to help your child.

A couple of things - when my son was tested by an audiologist we just went our local clinic/hospital. My insurance covered it. You may need to get a referral from the Kenny's doctor to get insurance to cover it. Perhaps check out your local Children's Hospital. I know you are hoping to find someone who understands the complexities of older child adoption but someone who is trained in this area should have some understanding of what he/she is looking for. The whole English isn't his first language piece is BS. Have him evaluated by someone who doesn't have a stake in the outcome. I know a diagnosis in and of itself won't tell you how to help Kenny but that diagnosis is the key to accessing the services he needs. Have the diagnosis and other doors open up. I don't know enough about CAPD but others here have talked about how it is considered a disability under the ADA. If it is classified as a disability, perhaps Kenny would qualify for social security disability, which would give him the state health insurance and perhaps a monthly subsidy. Again, this could open up doors for services he won't have access to.

Second of all, I went through the same crap with our local early intervention. I requested my son be evaluated, which they did but then they said based on those evaluations he didn't qualify for EI. I appealed their decision and had to go into front of an administrative law judge. I won my appeal and the EI program had to service my son. The law judge said he usually did appeals for the school district, basically just what you need done.

So...if I were you, after you heal your body a bit and gather your strength...request an IEP (or whatever the equivalent is in the home schooling world) in writing. As a parent, you have the legal right to request your son be tested. If they refuse to even test him, you have grounds for an appeal. If they test him and find deficits and then refuse to help him you have grounds to appeal.

Appealing is not the same as filing a lawsuit. I didn't even have an attorney, I just did a ton of research on the laws and official guidelines for our state EI program. It was hard as hell, especially because I work for the county. The supervisor I was going against in my appeal has her office, literally, across the hall from mine. But it was completely worth it in the end. If the district is refusing to test Kenny I would ask them for the procedure to appeal their decision.

I would continue to take the 2 pronged approach. Push the school district while searching out testing and support on your own.

Good luck, I know how exhausting this is. You and your family continue to be in my thoughts and prayers.

Tammy said...

BTW - when I don't know what to do, I talk to other parents. You are probably aware of this group but if not I thought I would share it. I know nothing about it but maybe they could help point you in the right direction.


http://groups.yahoo.com/group/HS-Plus/

Anonymous said...

Please, please, please, dear friend, take care of yourself. For the next few days make yourself your ONLY priority. Let the kids and Dominick take care of you. You are the glue holding so much together. Make sure the glue stays strong.

Love,
Lael

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