Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Saturday, January 31, 2015

My Big Fat ESL Post - The Conclusion to it all

I want to start this post off by thanking the person that contacted me last year when I was in the middle of fighting a losing battle with my kids' school over ESL services.  She teaches in a neighboring county that had recently been through an investigation with the Dept. of Justice regarding a complaint filed over lack of adequate ESL services for minority students.  She sent me the link to that settlement saying, "This changed how we teach ESL."  I don't remember her name, but I just want to say THANK YOU so much.  There are some who think I shouldn't vent on this blog or write about the very real struggles we face if it makes others look bad.  Its my story to tell though, and I hope that by sharing what we've been through it can help others just like my reader helped me.

After I got the link to the settlement, I first printed it off and gave it to our school with a note that basically said, "I think this will be helpful to you since no one knows how to help my kids."  It was completely ignored.  I gave it to the Director of Assessment and Accountability in our county.  I had a face to face meeting with him (that I recorded) in which I asked him if our county had guidelines similar to that for ESL.  They didn't, and for the record, they didn't plan to because they didn't think they needed to.  What they had worked just fine.  I pointed out that number of students could not possibly be serviced by one part time teacher.  He said they could.  There were no plans to hire more.  I was told, "They'll be ok.  Kids are resilient."  Yes.  My kids that had just months before come from unspeakable trauma and loss are indeed resilient, but that has nothing to do with the school refusing to provide adequate ESL services as stipulated by Federal Law.

I realized no one cared.  No one was every going to care; nothing was ever going to change unless someone did something to enact that change.

I contacted the DOJ and the attorneys that signed the settlement.  (Google is a wonderful thing).  I filed a complaint, but I didn't just let it sit.  I emailed and called their office weekly to ask about it.  I explained the urgency of getting my kids help.  I switched gears full time from trying to make the school care to showing the DOJ just how bad it was.  I had saved every.single.email. to the school.  Every one.  I printed them all off and mailed a massive packet to the DOJ.

The scope of the problem was such that when the DOJ started looking into it in the spring, they realized that because my children were also either in special education or should be (but were denied evaluations and services) that it was beyond their scope, so they transferred the case to the Dept. of Education's Office of Civil Rights.

OCR opened an investigation during the summer last year.  My problems with the school continued right up until that point.  Evaluations not done for months and months and months when I requested them in writing.  Once they were done, there was no ESL teacher at their eligibility meetings to even speak to their ELL (English Language Learner) status so my kids were denied services based on their Limited English Proficiency begin the reason they were doing so poorly.  This despite the fact that I had let the school know before we even travelled to Ukraine, as we were in Ukraine, and when I enrolled them here, that my boys had special needs and learning difficulties IN UKRAINE.  As in they could not read or write in their native language.  I had school transcripts showing poor grades.  I had teacher notes stating poor performance.  It didn't matter.  They didn't care.  They weren't listening.

We were desperate to help our kids.  I requested that the school pay for independent educational evaluations done by an international adoption expert.  This process took until all the way into October of 2014.  All 3 children (D, M, and E) were found to have *surprise* severe learning disabilities including but not limited to, dyslexia, developmental dyslexia, visual discrimination deficits, brain dysfunction, hearing impairment, optic nerve dysplasia, math disorder, visual processing deficits, auditory processing deficits, comprehension deficits, language disorder, along with PTSD, depression, and anxiety.

All of that out of kids that were considered by their school to be borderline intellectually disabled, but "happy with no signs of anxiety."  All of them scored within the average IQ range when given a test that wasn't geared to their deficits.

As validating as that felt for me, to be right 3 out of 3 times, its infuriating.  They refused to listen to me and they wasted a year of my children's lives while putting me through immeasurable amounts of stress.  We put them in school immediately upon coming home, knowing how far behind they were, in hopes that they could immediately start catching up.  Instead they were denied the help that they so very much needed.  I do not think I will ever reach a point in my life where this doesn't make my blood boil.  It infuriates me just to sit here and type it out again because I tried so very hard and those people just didn't care.  That is all there is to it.  They did.not.care.

We made the decision to move to a different school district.  There was no way we could purposefully send our kids back to a school that had been so willfully negligent and discriminatory.  I just knew that I was going to end up in the office with a baseball bat smashing the hell out of something.  I am the most non confrontational person I know.  I hate confrontation, but a mama can only take so much.  Those kids are my babies that I moved heaven and earth and crossed oceans for.  I would 110% smash up an office for them.  (but I didn't)

Finding a house in the school district we wanted proved difficult, but we finally did.  Now we are sitting on two mortgages, praying our other house sells, but it was worth it to be away from that school and the idiots running it.  I'd like to say that everything was super smooth at the new school because everyone knew I had filed a complaint.  I figured no one would dare repeat the same mistakes.  But it happened.  Minor issues are going to occur and I get that.  I'm willing to work through things.  However, not complying with IEPs is a huge glaring issue that repeatedly is a problem.

When V was finally evaluated (yes I had to formally request it again at the new school) and we had his eligibility meeting, there was no ESL teacher present to speak to his ELL status and he was denied services under a specific learning disability and a speech/language impairment due to his Limited English Proficiency despite not one member of the team understanding a bleeping thing about ESL or knowing a word of Ukrainian.  He did qualify for an IEP because of his anxiety, but the anxiety and acting out come from his frustration due to a specific learning disability.  I was dumbfounded that it happened again, so I sat there and dissented again.  I requested an independent educational evaluation from an international adoption expert, again.  He won't have that until March though.  March!  We've been home for over a year now and he is finally getting a proper evaluation in March.  Again, I just can't describe how angry it all makes me.  I met this kid when he was 7 and I knew it then.  He's 10 now.  Life has been so unfair to him and I have had no issues with jumping in next to him and evening the odds, but Lord help us, it has been an upstream struggle all.the.way.

Since summer, OCR (Office of Civil Rights) has been communicating with/investigating our school district's ESL and special education program.  During this time, I was getting increasingly frustrated because no real change had occurred that was helping my kids.  No one was better trained.  No new plan was in place.  Weekly there was an issue coming up that related to ESL, and I just hated beating the dead horse.

Finally.  The district signed the settlement in November.  Oh happy happy day!  I got a copy.  Deadlines were laid out that the school had to comply with by certain dates.  I was hopeful that finally we might actually feel the change.

Two days ago my kids brought home letters stating that they would be receiving compensatory ESL services due to lack of adequate services that had been provided.  Beginning next month the kids will receive from 200/225 minutes a week of ESL services (based on their level).  Last year in April I was sitting in the office of the Director of Assessment and Accountability as he was telling me that my kids would not receive more than 30 minutes/week of services.  I wanted to fist pump and shout "TOLD YA!"  Because you know, I did tell you.  Like 100 times.

As much as I wish this meant it was "over" and I didn't have to do anything else; it doesn't.  I still have to have meetings for all 4 of my adopted kids because I am still fighting to get them what they need.  Yes, we've had 3 Independent Educational Evaluations done.  Yes, we've re-qualified M and re-written her IEP, but I've already had issues with it not being followed and we are still waiting on at least 3 other evaluations for her and we'll have to have yet another meeting to re-write the IEP again.

We had the eligibility meeting for D finally.  He was getting zero special education services all.of.this.time.  (I will add a note to say he was put on a hybrid schedule via his ESL plan at the new school, since October, with interventions that have helped, but he was still not eligible for special education.)  He is 12 and he can't read.  He never could.  It breaks my heart to see him struggle.  Finally, last week he was found eligible for an IEP under a specific learning disability because you know he has several.  Like I said.  Yet despite his PTSD diagnosis, the school didn't feel he has an emotional disability because they "don't see evidence of it in the school environment."  This kills me, not just because he didn't qualify under that category but because they don't see it, so they think he's learned to cope.  I live with this kid, and when his trauma is triggered, he isn't coping.  He withdraws, he shuts down, he internalizes it, and it is being missed at school because he's so compliant and passive especially when he's upset.  Yes, most of the time he is pretty happy and easygoing, but the trauma is right there under the surface just waiting to be scratched by something as simple as an unexpected shove or a raised voice.  He will act confused, bewildered, and just withdraw.  If you ask him if he's ok, he will say yes.  Its survival.  I've seen it myself as recently as last week when he got too cold, so it absolutely kills me that its just not acknowledged as something that affects him academically.  It totally does.  He still qualifies for an IEP, but this is my child and I want him to be understood.  I send him away to this building and these people for 7 hours a day, 5 days a week.  I still feel like they do not get the extent of his trauma.  This is something that is making me completely rethink next year for him because everyone actually thinks he will be just fine in middle school and all I can see is what an absolute traumatic disaster its surely going to be when no one will even acknowledge that his PTSD affects him at school.  He refused to go on his field trip in the fall because he heard the bus ride would be around 2 hours long and in addition to not wanting to ride because of the noise level, he was scared of getting sick on the bus.  So he skipped his 5th grade field trip.  I really think that qualifies as not typical behavior, but I'm the only one that even remembers this happening.  This is the point where I want to throw up because I am so concerned for my boy.

We haven't actually met to write his IEP yet.

E had an independent educational evaluation that clearly shows he has severe learning disabilities, even worse than M who has cerebral palsy caused by two different kinds of brain damage.  E "looks" ok so the school last year just chalked his difficulties all up to him being intellectually disabled and not speaking English.  We haven't even met to discuss his new evals yet.  Again, I just get sick even thinking about it because we've done this so much and its turned out so horrible.

This is kind of where we are at.  We've finally been able to get lawyers involved with a local child advocacy clinic, which has meant that the school has to include their lawyer at all meetings that our lawyers are at.  This has actually proved helpful and I asked my husband if I was crazy for liking the school board's lawyer better than the crack heads IEP team at our previous school.  All I wanted was someone that understood the law and would actually comply with it to best help my children.  That's it.  Its been more helpful to have the school's lawyer at meetings because then the school is held to the law
by their own lawyer.

I feel great relief that the settlement is done and the school is complying with it.  That is a very validating weight off of my shoulders, but at this point (over a year home for the newest 3) ESL is the least of my kids' problems.  The good news is that 57 additional ESL children were "found" by the school during this settlement process so there are now well over 100 children in addition to mine now receiving compensatory services.  That surely does count for something even if I have never met them or seen their faces.

What I am having a hard time getting past now is how we've been treated throughout this process.  There were actually people spying on my Facebook page, sending posts back to the school.  These were people I considered friends.  People I thought would care about what my children were going through.  I was so wrong.  Most people do not care, and some sided with the school.
(I do want to say that there are a few friends that have stuck with me through all of this.  For them I am very grateful.)

We lost our church because our pastor didn't want to involve himself in our lives when we tried to talk to him about the issues we have faced with the school.  I feel almost guilty typing this out because he is a pastor, a man of God.  What kind of person has bad things to say about a pastor?  What kind of person gets the shove off from a pastor!?  He is someone who we thought would care the most about children in this county not getting what they needed.  We thought that by speaking out and standing up for not just our children, but an entire county of children that we might be at the very least understood.  We were so wrong.  He did not care, and we were left without the support of our pastor or our church during a time that has been very difficult.  I think that this has been the most cruel blow because it came from the place least expected during a time we already felt so raw.

I can honestly say at this point in our lives, after going on an incredible faith journey to chase God's calling twice, seeing impossible mountains move, and stretching ourselves to the max (twice) to open our hearts and home, we have zero interest in ever joining another church.  Don't get me wrong, we are as dedicated believers as we have ever been.  Our faith is as strong as it has ever been.  We trust God more than we ever have.  We'd do this all over again.  What has happened is that the level we took our faith to, our values, our beliefs in standing up and speaking out for the voiceless, and the places our calling led us has for whatever reason made our pastor and our church so uncomfortable that we were no longer welcome.  I can honestly say it broke our hearts; it also opened our eyes.  This is why there are still 147 million orphans in the world.  No one wants to do the hard things that bring about change because they are not fun, cheap, easy, or popular.

Maybe next I'll post on how we're feeling about joining the ranks of the de-churched.  I can say its not an awesome feeling, but its definitely a direct result of standing up for our kids.  So if the church doesn't want people who fight for their children (twice) then I guess we don't really want to be a part of that anyways?  We haven't decided how we feel.  Mostly right now, angry; I think if you dug past the anger there would be deep, unjustified, hurt.

I read a quote that said, "The greater your capacity to love, the greater your capacity to feel the pain."  If anyone reads my blog and can feel just how much I love my children then you can imagine how much it hurts to be rejected for loving them so deeply.  It just hurts, and right now it quite simply just demands to be felt.  
   
I do want to a make little note here to say that we firmly believe in tithing.  We've struggled with how to do this without a church.  We have set up a monthly "tithe" to a ministry in Ukraine called Jeremiah's Hope.  You can find them on Facebook, and I strongly encourage my readers to go check them out.  Donations are desperately needed as they try to serve not only at risk children, but the refuge people of war torn Eastern Ukraine.

    


Monday, January 26, 2015

Book

I've been working on writing some things down from the past year, trying to process what I've dealt with.  As I shared in a previous post, I really hope to write a book about all of it.  In writing though, I've come to realize a few things.

1) I never got the chance to process the grief of losing the boys' baby brother.  There was no time to grieve in Ukraine and once we got back it was the sudden shock of realizing I had to fight the school.  I never got time to grieve the child I planned for, but didn't get to bring home.

2) I am still so very angry.  I write and it comes out.  I am still so deeply angry and hurt for so many reasons.

3) I can more clearly see the inconsistencies of the nonsense the school has stated when I take the time to write out what was said in a meeting.  For example, I had a teacher (that does NOT speak Ukrainian) insisting that V still understands Ukrainian, despite the fact that he can no longer hold a conversation with his own grandmother in Ukraine via Skype.  He just cannot remember the language.  I'm sitting there explaining that he's not really an ESL student because he has no second language anymore.  English IS his language.  They are saying no no no, his issues are because he doesn't speak English well, while they insist he understood the translator on the evaluations.  Ok.  So IF he can understand Ukrainian and a translator was used then how the heck can Limited English Proficiency be listed as the reason he didn't qualify for Special Education services under a Specific Learning disability?  The eval was translated right?  Yet that is the reason listed in his meeting minutes.  INSANITY.  Which leads me to number 4.

4) I am still so very angry.    

Wednesday, January 21, 2015

Having Special Needs Kids is like X-ray Vision

I think a unique opportunity, a gift even, presents itself to those who parent children with any form of special needs, whether it comes from past trauma, is a physical disability, an emotional disability, a learning disability or a combination of several.

At first the gift may not seem like one.
At times it may seem like salt in a wound.
At times it may lift you out of the deep funk you've been in for weeks.

You see, children that need a little (or sometimes a lot) more help to succeed in life have a polarizing affect on the world around them.  Its like X-ray vision shining on everyone they encounter.  The outside of a person means nothing.  Instantly the inside of a person's soul is revealed in the way that they interact with this child.  Teachers, friends, co-workers, church members, and perfect strangers all fall subject to this equalizing standard: "How did they treat my child?"

As a parent, who you thought a person was just falls away when you watch them either react with delight, determination, apathy, or outright contempt as their life is touched by your child's.  Your opinion of that person hinges on the way their soul is revealed by your child.

People that you probably would never have chosen on your own to be friends with suddenly become your ally.  Those you thought had your back are sometimes last seen jumping off what they have labeled your crazy train.  You might find yourself counting therapists among your best friends while joking that you are probably going to hell for adding church members to your mental hit list. (that is a totally valid coping mechanism by the way)

Teachers can validate and encourage parents of special kiddos with their efforts that far surpassed what was expected; or they can frustrate the living #$*@) out of parents with their condescending tones and refusal to educate themselves just a little bit more.  I've been so grateful to some teachers while being so infuriated at others.  That X-ray vision pouring out of my kid just illuminates right to the very core of people.  A rough first impression can fade away when I see how a person relates to my kid.  People have gained my respect (and prayers to heaven for immeasurable favor because thank.you.God. when someone gets it) just for being willing to learn how to better help my child.  In the same fashion, an initial favorable impression can be shot all to heck when I get a note home raking my kid over the coals for something I warned was a trauma trigger. (hit list)  

Life with special needs children is surprisingly enlightening.
In some ways the world is more confusing (hello medical issues!), but it some ways it is just so much more clear.
We parent kids that shine a light right through people.  We get to see more.


This is what I meant when I wrote over there on my sidebar that our kids have taught us more about the world than we will ever teach them.  The lessons continue.
Sometimes painful, sometimes not; but always enlightening.  

Tuesday, January 20, 2015

Fun Things to do as a Large Family for Cheap

No, this post isn't about that we do.  I'm asking my readers, are there any fun things out there that a large family can do for cheap?   I'm so over the "kids eat free" nights at restaurants only to find out that its "one kid for a paying adult."  Um not so helpful here.

Or the "family" pass at the local pool.  Two adults and two kids.  We'd have to buy TWO family passes just to swim and then pay for their overpriced poolside snacks.

Great Wolf Lodge currently has a groupon, but for a family of 8 it was still over $400 just to spend one night and play in the water park.  

W desperately wants to go to LegoLand in FL.  He's been a Lego fanatic since he was about 2 and he gets the Lego Magazine that always has LegoLand advertisements on it.  We'd love to go, but ooooh its so expensive!  

We don't fit in a condo anymore, so to go to the beach we have to rent a house.  We've done that twice now in the off season so we could afford it.  

Even the State Fair is outrageous with the cost of tickets and then the cost of food.

So, what do large families do for fun that doesn't break the bank?  

Monday, January 19, 2015

You don't remember WHAT!?

So this happened today, and since this is my journal; I must document what I posted on Facebook for posterity.

Only moms of boys can relate to having a child with a headful of horribly singed hair that CANNOT REMEMBER how it happened. Dude, some days I swear certain ones are never going to be allowed to drive. If you can't remember a fireball in your face then clearly you need to practice awareness a tiny bit more or you might die by being surprised by steps as you walk down the stairs.  
‪#‎haircuttime‬

Friday, January 9, 2015

W's take on his day


W: "Mommy when when I grow up I think I'm gonna be the President of the entire United States.  I'm gonna change the schools and make them do recess for 1 hour and 55 minutes."
This is his response, after stewing over it since he got off the bus, to being unfairly accused of talking in line to V (who would happily tattle but confirmed W did not) and having recess taken away.  He's so my kid.  We are rule followers, but if something is wrong we're taking it on like Donkey Kong.  WJ for President in 2045.

How M's IEP meeting went

 I guess I'm not the only one that has referred to "them" as Special Education Nazis.

Thursday, January 8, 2015

A First

Because this is "The Johnson Journals" I want to write down our real life journey.  One day I want to print this blog and have it made into one of those cool blog books.  So its important to me to document what our life has really been like.  Not just the "fun" things.  Mostly the past year has been a lot of work.  So I write posts like these to be real.  I write with sarcasm because its how I deal.  Everyone has to find a way to cope with stress.  My way is to make it funny.

Moving on...  


I had an IEP meeting today.  Like when do I not right?  And to be honest, I was just not expecting good things.  I've grown so accustomed to always being disappointed.  I didn't even stay up past 11pm last night.  I didn't even pull M's file out to look it over last night.  I was horrified at myself, but to be honest I was just so tired of it always being a fight.  And for what?  Here we are… having another meeting only this time with lawyers.  I mean, is this your idea of fun or what!?  Its either going to go well or its not.  What I do doesn't really seem to matter anymore.

The meeting itself dragged on.  We wanted several of the goals revised and just oh.em.gee. it took for.ev.er.  Its hard to describe an IEP meeting.  I feel its a lot like a political debate.  You get to hear a dialog on what wonderful strengths your child has, and then you get to hear about how terrible other things (like her walking because I really was totally unaware her knee hyperextended!) are.  People read things out loud (I just hate this part more than fingernails on a chalkboard.  Its just painful.)  Then everyone avoids answering questions about how help the situation with actual facts and instead talks even more about what they are doing right with all of the other children.  The words "research based programs" "laws" and "standards" "making progress" and "according to our evaluations" are tossed around coupled with "we don't do that here" and "what we are suggesting is the most innovative thing since we put a man on the moon."

I broke my toe over Christmas break.  For some reason that little sucker was in mega pain during the meeting.  Just keep that in mind because it was on my mind the entire time, and it was annoying just like this sidebar to the real post.  I was *this close* to removing my boot in the middle of the goal typing saga because just, OW.  But I sat there and dealt because moms deal; honestly the meeting was more painful than my broken toe so the distraction was helpful.

Anyways back to the story.  M is dyslexic.  M needs a reading program for dyslexic children.  She's struggled for years, and we finally know why now.  It seems simple enough, right?  Teach the dyslexic kid to read with a program mean for dyslexic kids, right?  But do they have a program for that?  Well there was no one there to answer that question.  Is the program they are recommending for her a program for dyslexic kids?  Well it doesn't have a name?  Really?  Except that it does, just you won't tell me.  And actually no, when you say that other dyslexic kids are in that program, that doesn't cut it.  While I do not doubt that other dyslexic children have indeed been put into that program, its not working for MY kid and that would be who we are discussing right now.  My kid.  And again, I'm sorry (actually I'm not), but PROGRESS does not mean she is not entitled to a program more suited to her needs.  A kid with CP can make progress walking, but AFOs would make that process so much easier and less painful.  Do you see where I'm going with this?  Progress doesn't mean she doesn't need more help.  You wouldn't deny kids with cerebral palsy AFOs because they are making progress when everyone knows that the braces are necessary.  So don't deny my child a reading program just because she's managing to make some minimal gains in a program not suited for her disability.  Duh.  Why pay thousands for an outside eval when you won't take the recommendations in it seriously?  Its like an alternate universe in those IEP meeting rooms, I'm telling you.  Bring an oxygen tank.  

So yeah this is how the meeting went.  I absolutely was not signing that IEP in its entirety.  AND I was told we'd have to have yet.another.meeting.  to discuss the same things over again, this time hopefully with someone there who could answer the questions!  How fun!  More unnecessary meetings!  I was totally planning my homeschool curriculum on the way home because how could I do worse!?

After the meeting, I immediately left and went home to do my own research on the Read Well program as well as send some emails asking questions to a few knowledgable people in high places.

An hour later I got a phone call from someone in Central Office.  I was profusely apologized to for how the meeting was run.  Apparently there were instructions to be more helpful, offer suggestions, and have more knowledgable specialists there to answer my questions.  But um, there was not.  Why?  Well isn't that the question of the year, hmm?  I'm sure it was once again a "misunderstanding."  It always is.

The good news of the day is that the head person for SPED has taken over my kids' cases.  She'll be running the meetings from now on.  There is nothing about the former person being replaced to make me sad.  Bless the wasted days.  Just bless it.

Is this the start of new forward progress?  I have no idea.  It could be one more song and dance like I've grown so accustomed to.  I won't even get hopeful yet.  But for today, even if its just for today, the apology did mean something.

Now, don't you just want to attend an IEP for yourself to see how much fun it is?  You'll find all sorts of unpleasant things like wart removals or DMV visits so much more tolerable afterwards.

My husband won the award for best text of the day.  He texted me right before the meeting and said, "Make those lawyers earn their money."  That is why I married him.
  


Monday, January 5, 2015

SPML surgery - Before and After


When we met her in 2010.


When we met her.  (we were nervous because we weren't supposed to be taking pictures lol!)



M in 2012.



M in 2012.  Notice the toe walking, particularly on her left foot.  She just couldn't get her heels down.




The video we took in early 2013 to send to Dr. Nuzzo in New Jersey for the initial consult.  The man is truly a genius.  He took one look at her video and told me more about her cerebral palsy than anyone else ever had, BEFORE he met her in person.





After.
Tonight.  8 months post-op.
She's so much more stable.  She's no longer thrown so forward by the toe walking.



We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson

 

ALL CONTENT IS COPYRIGHT AND MAY NOT BE COPIED OR REPRODUCED WITHOUT WRITTEN CONSENT OF THE AUTHOR. COPYRIGHT 2017