Sunday, February 10, 2013

Another IEP down...

During the school age years of their children, parents become experts in many things.  Some parents perfect the art of doing the "room parent" thing...classroom parties, field trips, Box Tops for Education, the PTC, etc.  Other parents learn how to juggle homework, housework, sports and extracurriculars.  I have definitely learned the juggling game but my specialty is the IEP.  I am a pro at it, having at least two, if not four, IEP's each school year.  Some of my IEP's are simple, others have been a complete nightmare, lasting over an hour while we haggle over which services and accommodations the school should be supplying for my kids.  The thing to know about IEP's is that they are sort of like the IRS....they will not make it easy for you to get the most you can.  You have to dig, and work, and fight for the best.  I have been blessed to have a best friend who works in special education and can give me all the tips I need to make the most out of the IEP experience.  Between her expertise and the ten years I've been in the IEP game, I feel like I have a pretty good handle on what to do to get the best education for each of my children.  

A few years ago I took an English comp class at GRCC.  The first paper I wrote was on the IEP process and in honor of Aidan's most recent (and thankfully simple!) IEP, I thought I would post it.  Mind you, this was written a few years ago and some things have changed about the IEP (such as the fact that the parent no longer needs to sign it and the fact that it is done online now) but the basic facts remain the same. 



A Parent’s Guide to the IEP
            I sat down at one of the few adult-sized tables in the building and greeted everyone already there.  While waiting for everyone else to arrive, I signed in and made small talk with the Resource Room teacher.  The school’s new speech therapist was in attendance and seemed taken by surprise at my knowledge of the proceedings and the ease with which I tossed around their own special brand of jargon, Special Ed speak.  The therapist made a comment about how I must be a pro.  Not to brag, but I am.  As a parent who has two children that require a little more assistance than normal in school, it’s practically a requirement to be well versed in the Individualized Education Program, or IEP.  An Individualized Education Program acts as both the building blocks and the structure that form the education plan of a special needs child.  I look at the special education arena as a labyrinth to be traversed, with many twisting turns and false starts but with the important end goals of the best education and chances in life as possible for my children.  All a parent needs to get through that maze is motivation; knowledge, a glossary of acronyms and a good roadmap will come with time and practice. 
            The entrance to this particular maze simply requires the recognition and admission that your child possibly needs additional help.  You may notice that your child is struggling to read at grade level, or taking a large amount of effort to put even two coherent sentences together while writing.  A parent’s intuition is rarely wrong and in any case, a little overreaction in this area is not a bad thing.  So take note of any concerns you may have and bring them to their teacher.  Please keep in mind that teachers often feel overwhelmed at the needs of all of their students, so while it may seem as if they are dismissing or ignoring your concerns, that is not the case in general.  In almost any school setting, and definitely in the public school forum, students can “fall through the cracks”.  Persistence eventually pays off though, so stay dedicated.  You will eventually have the undivided attention of your child’s teacher.  Once you have explained your concerns to the teacher, they will begin the process by addressing these issues during a team meeting.  A team meeting is generally a regularly scheduled occurrence that is attended by most of the teachers, special education and administrative staff.  It is where they discuss student issues and any educational concerns they may have.  The end result of this meeting is a general consensus that your child will be tested to verify whether or not they qualify for any special education services.  These types of services cost the school districts money that they can ill afford in this day and age of the budget cut.  Therefore, they must have proof that a child truly needs a service in order to provide it.  The testing and qualification process will not happen overnight, so be patient.  For both of my children, I waited an average of two months between requesting testing and sitting down for the first IEP.  Many schools share speech therapists, psychologists, and occupational therapists with several other schools in the district, so scheduling a time that works for everyone involved can be quite a balancing act.  Once the testing is completed, the educators will meet again to determine the best plan to help your child succeed at school. 
            The IEP is the culmination of the testing, its results, and the plan of attack that your child’s school has prepared.  The first IEP is always longer and more detailed than the standard follow up meetings you will attend each subsequent year.  In this first IEP, you will get to meet the educators that will be working with your child to assist them in their scholastic career.  Depending on which specific needs your child has, you may meet a speech therapist, a school psychologist, a social worker, an occupational therapist, or a resource room teacher.  Once the introductions have been made, you will be asked to sign in on the IEP form to verify that you attended.  Since the IEP is part of the Individuals with Disabilities Education Act, it is subject to guidelines and requirements as mandated by law.  The paperwork used in an IEP follows a standard format that outlines the team report, your child’s eligibility and present level of academic performance, the accommodations and assessment provisions they will be receiving, and the goals and objectives that the educators have committed to helping your child achieve.  There is also a section that outlines the actual special education programs and services that your child has qualified for. 
            The IEP team report basically summarizes what the team has determined from the test results.  The alphabet soup of acronyms in the special education world can be quite intimidating.  To be told that your child has a primary qualification of OHI with a secondary qualification of SLD makes you wonder if what your child has is contagious or possibly fatal.  Once you know that your child is simply qualified as Otherwise Health Impaired (because they, for example, have a medical diagnosis of ADHD) and that they have a secondary qualification of a Specific Learning Disability, you will feel relieved to find that it isn’t really as bad as it originally sounded.  The team report is also where your child’s strengths and your concerns are listed. 
            After the team report, the IEP usually follows with your child’s present level of academic performance.  This is where the team members comment on your child’s current functioning level of academic achievement and performance.  This area can also be intimidating if written properly since they should be quoting the state codes of requirement for your child’s grade level content expectations (GLCE) and explaining why your child does not meet those requirements.  Also listed here will be their observations based on the formal and informal assessments they have done on your child.  The more detailed this area is, the better.  It shows that the school is committed to being thorough with each child while assessing them and providing assistance as needed.
            The next portion of the IEP is one of the most important sections.  It is where the team members list the supplementary aids, accommodations, and assessment provisions.  Basically, this is the roadmap to your child’s success.  If your child struggles with writing, this area may outline the need for a scribe or a word processor.  If they wrestle over math, maybe this area will allow for the use of a calculator or adjusted math assignments.  The assessment provisions also provide some relief in the form of the standardized testing.  It may allow your child to be in a small group during standardized tests, or let them have the test read to them.  The team members can write in the need for frequent breaks while testing, distraction free settings or assistance in filling out the bubble forms.  In the case of my children, this is the section that I have memorized.  It provides me with the ammunition that I need to ensure that my children are getting the most out of their education.  This section gives parents the legal framework to make sure that their students are given every opportunity to succeed. 
            The final portion of the IEP focuses on the goals and objectives that the team has put into place to assist the student to progress in their general curriculum or to help them in meeting their educational needs.  If your child has more than one area that the team feels they need support in, each area will have its own goals sheet.  The goals and objectives sheet gives a basic outline of each goal that has been set for your child.  It will also act as a progress report during the course of the year when report cards are sent home.  In general, on the progress report each educator will make notes about how your child is progressing and letting you know of any strength or weaknesses they feel are important. 
            By law, the school must have a signed IEP every year, and it must be signed on or before the date of the previous year’s IEP.  I would highly recommend keeping copies of each IEP and progress report as you receive them.  It is a helpful tool to show you the progress your child has made since they’ve been receiving special education services.  It never hurts to also have the IEP’s as a reference in case you have a question on whether or not your child should have had to take a timed test, written an essay without a scribe, or any other topic that was covered on the IEP.  After the initial IEP, the subsequent years are relatively simple and routine.  Every three years, the school must reevaluate your child to ensure that they still need the services they are receiving.  It is a success worth celebrating if they deem your child no longer needs extra assistance in a particular area.  That means that the IEP served its purpose and you, as a parent, have done your job.  Also, if at any time you feel that your child needs additional services, you are able to request them.  They will evaluate the appeal in a similar fashion to the original testing request and then determine whether or not services need to be added to best suit your child and their academic needs. 
            Surprisingly, I have often had teachers tell me how amazing it is that I am such an advocate for my children.  That statement gives me mixed emotions.  On one hand, I speculate whether it indicates that too many parents do not fight for what their children need.  On the other hand, I wonder if the word “advocate” is their way of saying “pain in the rear parent”.  Either way, I know that if I do not support my child in their scholastic career, no one else will.  If being an advocate for my children requires me to learn the acronyms, definitions and the inner workings of the Individualized Education Program, it is well worth it.  Learning the basic layout of the IEP and asking questions are two of the best ways to make sure you are well equipped to help your child attain their personal best.  Keep in mind the end goal to that special education maze and all of the knowledge and details will fall in line.  Stay in frequent contact with the educators that make up your child’s team and always monitor their IEP progress reports.  Remember that the tools to provide your child with the best education possible are available; they just may require you to learn how to navigate the mysterious world of Individualized Education Programs in order to do so. 
 

Saturday, February 2, 2013

Friendship Therapy

I woke up this morning feeling blue, with a lot on my heart and mind.  Then a household repair issue popped up that just about sent me over the edge.  Have you ever had one of those days where you feel like you're on the edge of a cliff and just the slightest thing can send you plummeting off?  That is me this morning.  My poor husband could tell I was upset but I didn't want to talk.  You know those moments...if you actually speak you're going to cry?  Yep, again, me this morning.

Since I couldn't speak without crying, but I felt like I was going to explode if I didn't talk to someone...I sent a text to my bestie.  Ahhh, what blessed relief.  I spent some time venting and crying and then soaked up her responses.  I was again reminded of how God blessed me when he brought her into my life....over and over again.  Somehow, over the years, we've had a few distances (where we missed a lot of the important stuff like babies being born and weddings!) but Lea always found me again.  And for that, I am eternally grateful.  

This picture says it all!

Friday, February 1, 2013

Brain Fog

One of the many joys of Sjogren's Syndrome is a side effect called "Brain fog".  Brain fog, according to this article, is a "condition that most people are familiar with, and yet there is no medical term for it and it cannot be researched by putting ‘brain fog’ into an Internet search engine. The closest term would be ‘mild cognitive dysfunction,’ but this encompasses a wide spectrum of often subtle changes. Brain fog is often experienced as problems with memory or difficulty focusing or problems with processing information or numbers or with paying attention. It is an experience of feeling not quite ‘all there’ mentally."  

Many SJS patients complain of brain fog and it manifests in varying ways.  Prior to the onset of all of the meningitis, I never really had any memory problems.  In fact, most people would have said I had a fantastic memory.  After my first bout of meningitis, where I lost consciousness for a few days, when I first woke up my speech was impaired and my memories were sketchy.  I now consistently have problems with word retrieval and definite issues remembering things.  If my husband is not going to be home when I leave the house, he calls to make sure that the stove is off (I now regularly forget to shut it off), the light is on, the door is locked, etc. 

Yesterday was a perfect example of brain fog.  As part of our homemade life, I make two loaves of English muffin bread every week to have on hand for breakfast.  I mixed up the dough, put them in loaf pans to rise and popped them in the microwave to avoid drafts.  An hour later, I went to grab the loaves and wouldn't you know, they were practically as flat as a pancake.  I had forgotten the yeast!  How I could have forgotten the most vital ingredient in bread is beyond me but I wasted a ton of flour and some time just to prove that SJS can strike at any time.  Lucky me.   

Thursday, January 31, 2013

Casting Anxieties

Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time.  Cast all your anxiety on him because he cares for you.  1 Peter 5:6-7

This verse should be my new motto.  I tend to be a worrywart....no actually, I am obsessive about worrying and planning if I am completely honest.  Since my illness began, I seem to have adopted a more relaxed, laid back attitude.  I'm not sure if that was more of a defense mechanism because I simply couldn't handle anything more, or if my illness showed me that all those worries were truly meaningless.  Either way, I've been cruising by without too much stress until recently.  Out of the blue, I'm swamped with worries.  Worrying about starting chemo, worrying about medical bills, about finances, about friends, about family members with illnesses, about teenagers, mothers, and things way beyond my control.  I wake up in the middle of the night every night (partially due to the steroids, but mainly, I think, due to the worries) and lie in bed with my mind racing.  In typical me mode, I try to make plans and determine the way that **I** can fix things.  Only I cannot fix anything.  My devotional keeps pounding me over the head with that knowledge, morning after morning.  

Yesterday it told me that God is the God of surprises and that He is not limited by the things I am limited by.

Jesus looked at them and said to them, "With men this is impossible, but with God, all things are possible."  Matthew 19:26


The day before that it told me "Delight yourself in the Lord and he will give you the desires of your heart" Psalm 37:4

And the day before that, I heard "Trust in him at all times, O people; pour out your hearts to him, for God is our refuge." Psalm 62:8

Am I sensing a theme here?  Our family puts a weekly verse on our chalkboard fridge for memorization and this week's verse is "Your word is a lamp to my feet and a light for my path" Psalm 119:105  I need to take this to heart.  His Word is here to comfort and to guide me.  I need to learn to rely on it and on Him, and to stop trying to rely on myself.

 

Wednesday, January 9, 2013

Less is More

At the time of year where resolutions are still fresh and the need to clean, lose weight, get organized and start working out is strong, I am feeling a need to get down to the bare essentials.  It's more than just cleaning or organizing, it's the idea that we are way too attached to "stuff".  We may have a small house but we have a ton of stuff clogging it, crammed into every nook and cranny.  Things that we haven't used or even looked at for months, if not years.  

One of my goals for 2013 is to pare down our possessions.  Do I need two full sets of good china with crystal glasses?  Do we need a kids cupcake decorating kit that was only used once?  Does my son need all 56 Lego kits that he has crammed into his room?  The same Lego kits that haven't been touched since he discovered Skyrim and Minecraft?  Does my daughter need the piles of teeny-bopper magazines that my mother insists on buying for her?  No, no, no and no.  

The idea of tackling all of this is a bit overwhelming so I've decided to divide the house into sections and approach it one small portion at a time.  This week it's our main DVD rack and the hallway closet.  I'm going to divide things into four piles.  Sell, give away, throw away and keep.  I am going to get the entire family involved so that we are all invested in living a simpler life.  Jimmy & I are looking for ways to teach our children to be grateful and content with what they have and I believe that this is definitely one of the steps in that process.   

Monday, January 7, 2013

Blessings Abound

The last holiday season was quite dreary and sad for us in the Chase family.  I spent Christmas, New Years, my husband's birthday and my birthday all in the hospital.  Sometimes I wondered if my illness had a holiday magnet.  I also spent the Monday through Thursday before Easter in the hospital as well as the few days before Halloween this year.  Thankfully, we have been blessed this holiday season and I've managed to stay out of the hospital for each and every important day so far.  All that is left to weather is my birthday in a few weeks but that one doesn't concern me as much.

Last week we were able to ring in the New Year with some good friends and then my husband had his birthday off so we were able to celebrate it together quietly.  Originally we had planned on going out for dinner but we decided to stay in with some movies and dinner at home.  

In honor of Jimmy's birthday, I made his all time favorite meal...sausage and peppers.  



Sausage & Peppers (adapted from here)
 
2 packages hot Italian sausage
2 cans of tomato paste 
2 12 ounce bottles of beer
5-6 peppers, sliced (I usually use a combination of green & red bell peppers)

1.  Brown the sausage in a large skillet on the stove.  Don't worry about cooking them all the way through, just make sure they are evenly browned.
2.  Remove sausage and pour in both bottles of beer.  Stir up the sausage drippings and then add both cans of tomato paste.
3.  Add pepper slices, cover and let simmer until softened.
4.  While the peppers are simmering, slice the sausage into medallions.
5.  Add the the sausage to the pan and simmer with a lid on for about 15 to 20 minutes, or until the sausage is cooked through. 

Today is a return to routine and normalcy.  The kids are back to school, the hubby is back to work and I am back to being on my own at home.  It is times like these that I wished I homeschooled the kids.  At least I have the puggies to keep me company and a whole list of goals to achieve this year. 

Tuesday, January 1, 2013

The Brevity of Life

As we rang in the new year last night with some good friends, we received news of a loss.  Our friend's husband was killed in a car accident and she was informed shortly after midnight last night.  Death is always a surprise, even when you know it's coming, and this shock has hit like a punch in the gut.  In an instant, the lives of our friend and her young daughter have been shattered.  It is a reminder of how short life is and that tomorrow is never promised.  

"Teach us to number our days, that we may gain a heart of wisdom." Psalm 90:12

As my friend faces the new year with this gaping loss, I pray that God gives her strength and courage.  My heart breaks for her and her daughter, and I pray that God uses the people in their lives to reach out and build them up. 

"A faith and knowledge resting on the hope of eternal life, which God, who does not lie, promised before the beginning of time." Titus 1:2