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beware of the mother bear

Wednesday, January 14, 2009

I had big plans today.
I was going to write a follow-up post to my lack-of-job-whining post. I left a part out and was going to go ahead and share it today...
Until I went to Alek's IEP meeting.
Now, it doesn't seem so important.
Side note: Why is it that I can go weeks without any real blogging fodder...and then all of a sudden be slammed with so much I have a backup in my queue seven days deep?
But I digress...
I went to Alek's tri-annual meeting today, and I am not pleased with the results.
Alright, part of me is pleased...the other part is TICKED!
First, some background.
An IEP is an 'Individual Education Plan'. This is the plan the school district draws up when they've ID'd your kid as having a problem that could use some extra help.
We had Alek tested in second grade. He was having some speech issues that weren't clearing up on their own...and he seemed to still be behind on his English.
The district agreed he did have some issues and with our help came up with an IEP. Alek's had two things on his plan...

  1. Speech. He had difficulty pronouncing his /l/ and /r/ sounds - like so many other kids his age.
  2. Language. Not surprising since his rocky start in life, the complete change in language...and one other condition.
Alek was also identified with Auditory Processing Disorder (APD). APD is a problem understanding what you hear. Alek is able to hear everything you say...he can even repeat it back to you verbatim, but he's not always able to make it his own. He could not, for example, paraphrase the sentence you just told him.
It would be verbatim or nothing.
So you can see where this hurts his academics, can't you? He is able to memorize absolutely anything, but when it comes to concept ideas or inferences during reading - he sometimes gets lost.
It shows up the worst on tests and projects. He has an incredibly hard time with reading comprehension tests. They leave him befuddled and frustrated. He has to have directions for projects repeated for him, just to make sure he gets it (I usually have the teacher just email me the directions so I make sure he and the teacher are on the same page.)
The frustration continues during class discussions. If at any point he gets lost because he's not able to understand what is going on around him - he shuts down. He'll start daydreaming...playing with his pencil...staring off into space, which forces the teacher to bring him 'back' with a tap on the desk or a hand to the shoulder. Its subtle, but its there.
The second thing to keep in mind about an IEP is that it is good for three years....hence the 'tri-annual' part. Actually, each year the IEP is reviewed to determine how well the child is doing and to take another look at what needs to be done to help them, but during the tri-annual the child is actually re-tested to see if the same problems still exist.
So with all of that in mind, here is what happened.
I went to Alek's tri-annual meeting and was told he doesn't qualify for an IEP anymore.
His speech is at 100% - which I totally agree with - see I told you there was good news.
And he's made huge strides in his language acquisition - which is also great news. If you think about it - it must be incredibly hard for a kid to acquire a new language when he has an auditory processing disorder.
He's come a long way.
But while his language is still a concern...its not low enough to be considered a real problem.
So Alek doesn't get an IEP.
I asked about a 504 Plan.
He doesn't qualify for that either!
Alek's teacher tried advocating for him. Here is what he wrote in his report...
'Alek's comprehension has improved throughout the year, however, he does still have difficulty taking tests. Alek often has struggles during the CORE Reading time when there is not some sort of visual representation of information or he is not actively engaged. Alek struggles in book group giving a summary of what was read. Using a notebook to write information down has helped Alek to remember the story and search for main ideas or deeper understanding. Using a projector to give the reading lesson has helped Alek stay focused and learn the content that is needed to be successful. Posting of the comprehension skills and content and strategies gives a visual representation of reading information for Alek to refer back to. Alek has been a great addition to S________ Elementary School. He has a positive attitude, is polite and is well liked by his peers and teachers. I would like to see Alek continue to make progress using strategies to help him process auditory information."

His teacher gets it.
His teacher wants him to get help.
It didn't matter.
Their hands are tied.
There is nothing they can do.
The federal government doesn't recognize APD as a disability.
So my son, who has a true learning disability, is in danger of being 'left behind'.
Thankfully, when we first moved to Grab-your-lasso, Wyoming, we were overflowed to S_________ Elementary. We were too late in registering them - there was no room left at the neighborhood school for our kids.
At the time I was incredibly disappointed - it would mean I would have to cart them across town twice a day - or let them ride a bus for an hour each way.
But now I realize its a good thing - because S________ Elementary is considered a Title I school...which means Alek can continue to get services for his APD even without an IEP.
Once he goes to Jr. High - in a little over one year - he will be on his own.
It doesn't take much to help Alek succeed...just some minor accommodations here and there, but in about 18 months he will have nothing.
No more requiring a teacher checking to make sure he understands the directions...
No more being placed in the part of the classroom that makes sure he has fewer distractions and is easier to be redirected by the teacher...
No more requiring the teachers to use overhead projectors to put the notes on the board - instead of just saying the stuff out loud and assuming everyone can follow along.

So Alek has 18 months to learn all of the coping mechanisms he'll need for the rest of his life, before moving into a jr. high where no one will help him.
And Shad and I will have to advocate for him even more than we already do.
We will have to become even more of a watchdog...just because the federal government doesn't think my son's disability is a disability.
It may not be a disability to them...but if left unchecked - it can become a huge disability in the future.
Without the extra help, Alek will more than likely get frustrated with the school experience...and you know where that leads. Grades drop...school becomes less important...and you can forget about college.
All because the federal government (who comes up with these regulations) doesn't think my son's problem is worthy of an IEP.
Well, I'm sorry. That's not good enough.
They WILL be hearing from me.
When we started the process of adopting Anya and Nick back in '02, we found out Iowa didn't recognize international adoption and that we would HAVE to readopt them once we got them home.
The mother bear in me didn't let the state get away with it. We had gone through too much, paid too much money, had too many headaches and jumped through too many hoops to have the state tell me my kids weren't my kids.
So I called my local representative who immediately constructed legislation which passed unanimously in both houses and was signed by the governor just a few weeks later.
I am not afraid of doing the same thing again.
I WILL contact my U.S. Senator...and we WILL do something about this. If he isn't willing to help me, I WILL keep knocking on doors until something gets done.
Alek isn't the only child in this country who is dealing with APD.
He isn't the only child who can be helped with just a few sessions a week to teach him coping mechanisms...and get the simple accommodations he needs.
And he isn't the only kid who is in danger here.
For now, Alek is holding his own with his grades. He does A and B work...even with this disability. But that is in large part to a huge amount of work we do at home...and a huge amount of extra work he has to put in just to stay afloat.
Just think how much better he would be doing if he had all of the help he needed...
And just think how much worse he'll be doing if he doesn't.
That's not an option.

14 salty messages:

Bethany January 15, 2009 at 2:48 PM  

Ugh, I hate falling through the cracks. A.J. was diagnosed with "some features of Asperger's," which means he doesn't qualify for any help, either. Everybody and their dog knows Asperger's is on the autism spectrum, except the state of California. And, since it's not a "full" diagnosis of Aperger's, the school can't give him an IEP or 504 plan, either. I know exactly how frustrating it is, especially when it's a few very simple changes that can make all the difference in the world.

Thankfully, the principal and all three teachers have been quite receptive to my requests and we haven't had to do any major fighting. If we do, I'll be on the front lines with you. Right now (and since we don't live in Grab-your-lasso, Wyoming), I'll be on the front lines with you in prayer.

Tina in CT January 15, 2009 at 10:35 PM  

You go girl! You have proven that an individual mom can make changes! Alex is lucky to have a mom that is so determined to make changes!

MamaPoRuski January 15, 2009 at 11:00 PM  

How can he not qualify for a 504? I'm thinking you need to get a lawyer and help them understand that they are failing to educate your child as required by law...
Let me know if you need help! I can growl while you sharpen your claws...

kate January 16, 2009 at 8:44 AM  

Finished reading. ;> Above comment still applies.

Rachel January 16, 2009 at 12:57 PM  

Hi Tami,
I have been following your blog for a little while now because I am fascinated with the adoption process (particularly international adoption)and these precious children in need of families. I just got married so my husband and I haven't quite thought about children yet, but I feel like God might be planting a seed here. Who knows what His plan is.
Anyway, I read this post and was amazed that a child who is adopted at such a young age can have a residual language barrier several years later. I believe Alek was too young to talk when you brought him home, but it sounds like english is somehow his second language. Could you explain that for me a little further? If he has only spoken english how does that work? Did he understand his "native" language at such a young age?

Old DAN AND Little ANN January 16, 2009 at 9:17 PM  

I'm glad he has a mama that is such a go getter! Think of how many others you will be helping too! You go girl! ;)

Shelley January 16, 2009 at 9:45 PM  

Do you have a medical diagnosis or any type of documentation from someone other than the school system saying that he has APD? If so, he does qualify for a 504 plan. My other thought was to have them test him for Specific Learning Disability(SLD). All you need is a DISCREPANCY between intelligence and acheivement. If his APD greatly impacts his reading comprehension, then you're going to see a discrepancy between his intelligence and his acheivement in that one area...which would then qualify him for an IEP nder SLD for reading comphrehension. Reading comprehension will then cover every subject it the classroom(even math because of word problems). I would pursue the 504 route first since he really just needs accomodations in the classroom. But, I'd be really concerned about what's going to happen once he reaches Jr High and High School and gets in mostly lecture based classes. He really needs an IEP for maximum "protection".
I do feel your pain when it comes to dealing with school systems. I have been greatly disapointed in our local schools.

Svetlana January 17, 2009 at 8:36 AM  

wow. I know what you going thru, i been there.I am glad that you not giving up. You should try to test him for SLD like Shelley wrote, that should help.
When i had foster kids i went thru the same problems with IEP, tryed to keep kids in their programms it always a fight for us as a parent to keep our kids where they need it to be.
We will pray for you and for Alex.

kate January 17, 2009 at 12:28 PM  

Posted a HUGE comment for you. Did blogger eat it or did you moderate?

Anonymous,  January 17, 2009 at 12:32 PM  

well i do agree that he does need help now,but he needs to be taught how to cope with his APD. i mean even if you get it so that somebody looks out for him through jr.high and high school nobody is going to be there to hold his hand in college,and right now is the time while his mind is still forming to be taught how to deal with this,because the minute that you blink he will be in high school and he shouldn't have to depend on an IEP to get him through it.if it were my child by that time i would want him to be more self sufficent than that. that would tell me that he was ready for college. you don't have to agree but those are just my thoughts.

Tami January 17, 2009 at 1:23 PM  

Anonymous...I ABSOLUTELY agree with you. That is EXACTLY what we're looking for. But unfortunately, without an IEP or a 504 plan, Alek will be left completely on his own as he works to make the transition.
Our goal has always been and continues to be, getting him the help he needs to learn how to COPE with this problem. We WANT him to be completely independent of extra help as soon as possible...but we don't want him to be handed over to the middle school system completely unprepared.
If he weren't in a Title I school right now he wouldn't have ANY kind of transition at all. No one would help with develop the skills he needs to keep up...skills like note taking - how many 5th graders do you know that can take effective notes without a teacher putting them on the board. I'm not just talking assignments here. I'm talking about lecture notes, vocabulary he doesn't understand, learning to ask questions when he has gotten lost (incredibly intimidating for a child who is shy...not to mention getting humiliated in front of his classmates because he wasn't 'paying attention'.) There are a myriad of things that go into this situation that Alek needs to learn to maneuver through. Something that as a fifth grader he's definitely not ready to navigate yet...he still needs help. THAT is my concern.

kate January 18, 2009 at 1:13 AM  

The missing comment came right before my "above still applies" comment and was written before I even finished reading your post.

The gist of it was, don't discount teachers. Just because there is no IEP *requiring* modifications does not mean they won't be made. Teachers want their students to succeed and do everything they can to that end. The original comment was much longer, more detailed and full of examples...

FaerieMama January 18, 2009 at 9:39 AM  

Tami! Off-topic here, but...I am loving your blog!

And I love all your graphics, etc. Do you make them yourself? And the russian proverbs...wow!

I look forward to reading thru your archives in the weeks and months ahead!

God bless,
Keri (aka FaerieMama)

Wishcrafter January 18, 2009 at 5:21 PM  

I know you well enough to know if it's you vs. the feds to protect your babies, my money's on you. Let 'em have it, kid. kg

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