Take your test scores and.....

Anyone who has a child with special needs has been down the path of testing your child.  The reasoning behind the testing is something like this, “We must test your child so we can see exactly where they are to provide the best education placement possible.”

Having been a former Special Education teacher, I kind of get this thought process.  However, having been a former Special Education teacher, I also know that the test scores don’t give me the complete picture of the child.  I needed to work with the child, talk with the child, observe the child, etc.  The test scores played a very small role in the overall picture.  

And yet….

there is so much emphasis placed on test scores.  You want to label my son, who has multiple disabilities which makes testing him very difficult, and tell me how successful he will be based upon these scores that aren’t normed for a child who has fine motor issues which cause problems with timed tests or vision problems.  

When S started school, we didn’t know for sure how much of an impact his CP and vision issues had on his intellectual development.  We were also dealing with the fact that English was not his first language.  He was adopted from Bulgaria at the age of 4.  Fortunately, we were working with a team that understood all of this.  Just in case they didn’t, I had printed multiple articles off of the internet addressing the issue of testing children who were adopted internationally.  

However,

there is always one person in the meeting who thinks the test scores are “it”.  That person, in this particular meeting, was the school psychologist.  She started spouting numbers like they were written in stone.  I, of course, had already flipped through all the pages to see what the end results said, and it wasn’t pretty.  Had we placed S in an educational program based upon these numbers, we would not be talking about him getting ready to graduate and going to college.  I would not be blogging about his love of History and Foreign Languages.  I would not tell people how he is currently taking German IV and took a year of Russian.  

However,

the rest of the team just wanted a baseline from which to work.  There was no question about his intelligence from them because they had all worked with him individually.  The test scores allowed them to check the box that said they had tested him.

We know that we were lucky to have the overwhelming majority of the team on S’s side.  They wanted to see him succeed academically.  They pushed him to do the best he could in school. The director of Special Education asked me one day if they were pushing too hard.  

“We just want him to be successful, and we don’t want him frustrated.”  

“Oh, you will know if you have pushed him too hard.  It will be VERY clear.”

And then,

we moved.  He was tested again.  

And then,

we moved again.  He went through a triennial review which is hours of testing.  

And then,

we decided to homeschool and that testing stopped.  How nice!  No numbers swirling around anywhere trying to determine what my child can or cannot do.  No numbers trying to dictate his future or educational placement.  

Because we homeschool, we do have to test him at the end of every school year to show progress to the state.  

The numbers are just that….numbers.  They don’t tell me anything I don’t already know.  He has a very strong vocabulary.  He doesn’t do as well with grammar (commas are not his friend).  He does well in math...as long as he writes the problems out and doesn’t try to solve everything in his head.

But now,

as we prepare to send him to college there is a great deal of emphasis on “THE TEST” whether it is the ACT or the SAT.  

However,

in order to get the accommodations S was going to require for either of these tests, we needed current testing data on him. We took him for psychoeducational testing.  So, he had to be tested before the test.  Is that as clear as mud?

Again, the results did not tell us anything we didn’t already know.  Every accommodation that was recommended was exactly what we had told the psychologist he would need.  [I am not hacking on this psychologist.  We brought S in there for this exact purpose.  This doctor was very nice and understood exactly what we were trying to do.]

In the end,

we decided that S would not take the SAT or the ACT. Taking the ACT or the SAT is not going to prove to anyone how well S will or will not do in school.  Only by working with him, talking to him, watching him, understanding how much time and effort he puts into his schoolwork will anyone understand how successful he will be.

Instead,

he will take the placement tests at the community college which is where he will start school in the fall.  We are hoping this will be done in the next 2-3 weeks.  He is working to get his accommodations in place at this point. This is a much easier process and less stressful for him.

So,

you can take your test scores and……find me on the couch with chocolate.

California School Experiences

When S was finishing up first grade in Alabama, we found out we were moving to California. We were excited when we were notified of our upcoming PCS (permanent change of station). When I had taken my Education courses in college, we heard about how progressive California schools were.  Imagine the possibilities for S in these progressive schools!  Knowing what had been done for him in Alabama at a Department of Defense School (great experiences), we could only imagine what California had to offer.  Imagine was all we could do. Here is what we encountered....

Early notification:

While we were still in Alabama, my husband called the school to talk to them about our upcoming move and the fact that S would be attending their school.  Their first response when told we had a child who had Cerebral Palsy was, “He will go to a special school.”  Really? The only information you have about him is that he has a disability.  You don’t know the severity of it, what his functioning level is, etc.  Papa and Mama Bear came out, and he attended that school.  As my husband said, “If you want to call your school special, you are right.  He will attend a special school.”

Playground:

S was asked to not play on the playground equipment because he might get hurt. Don’t the other kids ever get hurt on the playground equipment?  

Special Education Teacher:

After I sent a clarification letter to the Special Education teacher after our initial IEP meeting, she asked me in the walkway, “You are going to keep me on my toes, aren’t you?” (Thank you Wrightslaw).  

Emergency Evacuation Plan:

S was left in the classroom during a fire drill because the staff member (see above reference) who was supposed to get him didn’t.  Her response the next day to him (a 2nd grader) was, “You got out, didn’t you?”  

Classroom:

Spelling tests were given when he was at Adaptive PE so the teacher didn’t need to wait for him since it took him longer to type his answers.  

He wasn’t given extra time on the timed math facts tests if he had to write for himself because that wouldn’t be fair to the other kids.  

Field Trips:

S’s class went on a number of field trips during the school year.  That was good.  The problem was the school REALLY expected either me or my husband to chaperone to “help” with S.  My husband was in graduate school, so his attendance on the field trip depended upon his school schedule.  

Since I am a SAHM, I could usually go with; however, for one field trip, I ended up being very, very sick.  I was going into my fourth week of strep throat (I don’t have a spleen).  After an emergency visit to the ENT, I was placed on bed rest.  I was told I could only get out of bed to go to the bathroom and make sure my children had something to eat.  Needless to say, I wasn’t going on the field trip.

The teacher went into slight panic mode when she found out that neither one of us would be attending.  Here’s the deal, S is quite self-sufficient.  He was going in his wheelchair. He just needed some extra assistance maneuvering his chair around.  He might need help getting his drink open.  Not much more help than any other 2nd grader might need.  The school was able to get the Wednesday afternoon aide to come along to be his helper - not much of a stretch since she was going to drive the bus.  The biggest issue was that his wheelchair would be taken apart and stored in the storage compartment under the bus.  “Who is going to be able to put his chair together?”  (Really? It involved sliding the two wheels onto pins.)  My husband had to clarify for the teacher that the dads who were chaperoning, and had degrees in aerospace engineering, would be more than qualified to put the wheels on the chair.

End of Year Testing:

At the end of the year, we were asked if it would be possible to keep him home during standardized testing.  My husband told them that anything was possible. We asked if other students were being asked to stay home during testing. This question was never answered. Needless to say, S went to school.  

Homeschooling:

After all of this, the school was surprised that he was homeschooled the next year until we moved again. As his Adaptive PE teacher told me the next year, “They have not had to deal with parents like you before.”  We decided to take that as a compliment.  [We were very visible and vocal parents at the school. Can you blame us?]

Side note:  Despite all of this, our youngest son had a great time and experience there.  There were good teachers there.  You would have thought the two went to two different schools to hear us talk about their school experiences.  In fact, people who heard our stories asked us if they went to different schools.

Through all of this, our children have both learned how to advocate for themselves and stick up for each other.  What more could we want?  Maybe some time to sit on the couch with chocolate…

The "Great Big Book of S".

As a parent of a child who has special needs, I feel like I need to be prepared for whatever life throws at us.  I, along with my husband and other parents of children who have special needs, are asked to do many things for our children.  We are asked to be advocates for our children in the educational arena.  We are asked to convey medical information between specialists.  We are asked to schedule numerous appointments with therapists and coordinate insurance referrals.  We are forever filling out paperwork for some office or agency and dropping it off at the clinic so our doctor can sign it.

As a former Special Education teacher, I knew the importance of keeping all of S's documents. In meetings, I would tell parents that they needed to keep all of the papers together .  What I didn't know was the volume of paperwork that these parents were handling.  Also, it's not always clear divisions of paperwork.  Sometimes medical crosses into educational and vice versa.  

What has helped us stay sane throughout all of this?  We have what we call "The Great Big Book of S".  Through the years, we have compiled 3, 3-inch, 3-ring binders filled with S's information. 

We learned the organization techniques for S's book through Pam and Pete Wright's book, From Emotions to Advocacy, http://www.wrightslaw.com/nltr/12/ss.organize.file.htm, and additional helpful reading from http://www.wrightslaw.com/. We have adapted these techniques as we have needed for our situation.

*What goes into the "Great Big Book of S"?

1.  Anything pertaining to S and his care

2.  We have a list of all of his providers with phone numbers, fax numbers, addresses, and email addresses.  My husband has a copy of this document at work in case he needs to make phone calls.

3.  We have a plastic protector to hold any business cards we receive from providers.

4.  Medical reports

5.  Documents from school (IEPs, report cards, notes from the teacher, etc.)

6.  Any testing reports (school or elsewhere)

7.  Copies of any correspondence from us to others about S

8.  Insurance referrals

9.  Copies of prescriptions

*How is the "Great Big Book of S" organized?

1.  Organize everything chronologically.

2.  Create a "table of contents" for your book.  

3.  We printed calendars and put in the binder also to record appointments and meetings.  That was very helpful for us.  

4.  We used sticky flags to mark new months, so we could find things easier..

*How is the "Great Big Book of S" beneficial?

1.  There is a definite attitude shift on the part of professionals when they see us whip out the book(s).  We have traveled with some large bags to get these books to appointments.

Example of the benefit:  

Shortly after moving to Virginia, I attended a triennial review for S by myself since my husband was gone.  I came in with my bag full of binders, notebook, and pen.  Since we had just moved, I was talking to the team members from the school discussing S's transition.  An administrator from the district office came in, looked around, visited with everyone, and said that the meeting could start as soon as the parents arrived.  Imagine her surprise when she found out mom was there already..

2.  It saves our sanity to know that we have S's documents all together, and we don't have to dig for them.
Example:

A couple of months ago, we received a statement from the insurance company that they had paid a medical bill for S...to a gastroenterologist.  The problem is he has never seen a gastroenterologist. The date of service was the day he saw the ophthalmologist.  This was a call to the insurance company which was made much easier because we had the insurance referral, the medical bill, proof of our co-pay, and now this statement all together in one spot.  

3.  We are going to be able to hand him the books as he becomes an adult, so he has necessary information together.   Since he is now 18, I have started to weed out some of the documents. He probably doesn't need Explanation of Benefits from bills that were paid 12 years ago.  

Thank you Pam and Pete Wright for teaching us how to organize our book!  Their book, From Emotions to Advocacy, lays it out quite well.  It is a lot of work initially, but it is such a timesaver and lifesaver!  

Because their system made my life easier since S's paperwork was so well organized, I have free time to be on the couch with chocolate.

It wouldn’t be fair to the other kids.

IMAGINE:

Imagine being the parent of a child who has special needs.  This child can’t walk like the other kids.  He can’t run.  Writing is very difficult for him.  Speaking is difficult for him (hard to believe if you have spent time with him).  He has vision issues.  Every task for him is difficult to achieve, but he does it.  Everything he does takes much longer than it does for a child without special needs; his life would be easier if we did these things for him, but it wouldn’t be beneficial for him.  This is a child who could have had reduced assignments given to him in school, but he refused that accommodation as an elementary school age child.

IMAGINE:

Now imagine being the parent of this child as you sit in a school meeting trying to make sure he is receiving his “free and appropriate education” which is mandated by law.  [You haven’t experienced fun until you have had to sit through IEP meetings (sarcasm button).]  Imagine that you ask for some basic accommodations to try to level the educational field in which your child is expected to play and you are told by a school employee or someone from the state that the accommodation you are asking for “wouldn't be fair to the other kids.”  What?????  

You are seriously telling me that asking for my child to have accommodations put in place to access his education won’t be fair to the other kids.  We aren’t asking for anyone to do his work. We aren’t asking for him to be excused from work or tests.  We have already established that he wants to do the same work as the other kids.  We are asking for tools to be put in place for him to do the work and prove that he can do the work.

CALIFORNIA:

S’s second grade class took timed math facts tests.  They had to solve 100 facts correctly in 5 minutes in order to move to the next level.  There was a big bulletin board in the room showing their progression, and it was a BIG deal to have your name moved up to the next level.   They took these tests on Wednesday afternoons.  

Because of S’s CP, his fine motor skills are impacted, and he has functional handwriting which doesn't include writing for a timed test.  He had an aide who came in to write for him during these timed tests.  While the other kids had to write for themselves during the 5 minutes, S had to tell this adult the answers and wait for her to write them during this same time.  If the kids missed any, they had to repeat the same facts the next week.  Getting 99 facts right in 5 minutes was not acceptable!  

There were a couple of weeks that this aide was unable to come into the class during this time; therefore, S was expected to write for himself during the timed math test.  There was no way he was going to pass because he can’t write fast enough to complete 100 problems in 5 minutes.  We asked the teacher if he could have a little more time during tests where he was expected to write for himself, so he could have the satisfaction of passing without anyone writing for him.  “That wouldn’t be fair to the other kids.”  Are you kidding me?????  Forget the fact that he has an IEP that states he gets additional time on work and tests.

VIRGINIA:

Because S has fine motor issues, writing is extremely difficult for him (see above).  To solve math problems, we used graph paper with large squares. We would write the problems out so they were lined up, and he could solve them independently.  This was how he did math.  

We asked for him to use graph paper on his Math SOL (standardized test).  We had to submit the graph paper we wanted him to use.  We also submitted two math samples for S:  1.  One using the graph paper where the problem was solved correctly because his numbers were lined up.  2. One using regular paper where the problem was solved incorrectly because his numbers were all over the place.  

The state of Virginia told us that "it wouldn’t be fair to the other kids" because it was homemade graph paper and not store bought.  

Kudos to our principal for being brave enough to tell me that piece of information face to face. Kudos to me for not completely losing it in the school hallway.  I asked the principal if the state was testing math skills or writing skills.  I told the principal that “those people” need to come and spend one day in school with S to see what it is like for him to get through a school day.  I also asked the school if they could make the graph paper so it wouldn’t be homemade.  The reason we had to make it is he can’t write small enough for the graph paper sold in the stores. If he could write that small, we wouldn’t need it.

VIRGINIA:

Due to the level of his needs, S requires a number of accommodations to level his playing field.  It was extremely frustrating his fifth grade year as we went back and forth with the state trying to get his accommodations in place for the SOL testing that they require.  I remember telling our principal at the time, “We can’t possibly be the first people in the whole state to ever ask for these accommodations.”  His response, “You might very well be.”  He told me that most kids who have required the quantity of accommodations that S does typically don’t have the cognitive functioning that S does. (http://onthecouchwithchocolate.blogspot.com/2014/07/tell-us-little-about-your-son.html)

S is very aware of the challenges his special needs bring to his life.  He also knows he is entitled to accommodations by law.  He isn’t asking for an easy way out.  He is looking for ways to level the playing field for himself so he can be educated and become part of the work force.  The paralympics finds ways to level the playing field for their athletes.  You think society would realize that’s all we want for our son instead of telling us “it’s not fair”.

Is it any wonder I need time on the couch with chocolate (and wine)?

His Last First Day

Today is the first day of school in our city.  I sent my sophomore out the door to catch the bus at 6:10 this morning. Needless to say, S was not starting his day at that time!

It is hard to believe that S is starting his senior year.  He is in denial about it.  We are trying to look at the realities of it.  As a friend of mine from church said when I asked if her senior was ready, “It doesn’t matter if she’s ready.  It’s coming.”

As we prepare to roll into this year that is coming, I thought it would be fun to look back at S’s “first days” of school.  He doesn’t fully understand how hard he has worked and how far he has come. His school journeys started when he was 4 years old, barely speaking English (he was adopted from Bulgaria in March 2001), racing around in his walker up on his toes, “W” sitting in class, constantly talking, and charming everyone in the school building.

First day of preschool (May 2001):  We pulled up to Fort Rucker Primary,  I got S’s walker out of the van, took him out of the van, told him, “Don’t move!”, and turned to get J out of the van. Because S was so excited about school, he didn’t listen to my instructions to not move and walked right off the curb with his walker - both hands still holding his walker.  He landed on his face in the gravel next to the van.  I put J down, picked S up, found something in my van to wipe the blood off of his face (probably a dirty Kleenex), and proceeded to herd my children into the nurse’s office. We ended up at the hospital because S had a cut very close to his eye, so it was bleeding badly.  I walked into the Pediatric Clinic and begged them not to send me to Urgent Care.  They saw S, and it wasn’t as bad as it looked.  Needless to say, his first day of Preschool wasn’t at school.

First day of PreK:  The first day of PreK was cancelled due to bad weather - Tropical Storm Barry.  His initial IEP meeting was scheduled for the second day of school which ended up being the first day.  Imagine our surprise when we found out that no one from the school had informed his teacher about his needs related to his CP or that English was not S’s first language.  Her reaction in the meeting was priceless.  She went from thinking she had a child who had a lot of issues to telling us how well he did for the first day.

First day of K:  S was so excited to get to school!  His PreK teacher had moved up to Kindergarten and had requested that he be in her class.  He could write his name at the start of school which was very exciting!  We had worked on it all summer long.

First day of 1st Grade:  At this point, S felt like he was king of the school.  The staff at this school was amazing.  He went to school using crutches for primary support and his walker for PE and Recess.  He had to walk to the neighborhood bus stop, so he and J could ride the bus home together.

First day of 2nd Grade:  S started school in California.  He was a “walker” for school transportation purposes.  He would ride in his wheelchair while we hung his walker across the back and strapped his crutches into the holder on the wheelchair.  We were a sight!  He had helped write an informational book about himself to be shared with the class.  It had pictures and explanations of the different equipment he used and why.  He discussed things he would need help with and when not to help him.

First day of 3rd Grade (CA):  S was homeschooled the first half of third grade.  We did not have a good experience with the school system the previous year.

First day of 3rd Grade (VA):  It was a great first day!  Everything he needed was in place on the first day of school:  transportation, support services, correct seating in all of his rooms.  We had given his book from second grade to his teacher prior to his first day so she could share it with the class ahead of time.  We made the decision to have him in his wheelchair during the school day to conserve his energy for academics.  He used his crutches for near walking and his walker for PE and Recess

First day of 4th Grade and First day of 5th Grade: We sent S on the bus to school and then we met him there to make sure he had everything he needed in his classroom.  Again, the various support services from the district were there to make sure he was set up for success.

The Homeschooling Years - 6th-11th grade: First days have been different for him than his brother who is attending public school.  They are much more relaxed.  Some years he has let us take a picture on the “first” day.  Other years he has told us no.  Some years he hasn’t even been here for the first day.  He travels to Minnesota in late August/early September.  Some years he has had appointments on the first day of school.  Public school kids aren’t taking those slots. One year he picked up new AFO’s followed by a shoe shopping trip to the mall.

First day of 12th grade:  That brings us to his last first day.  He is a senior.  Before we know it, his last last day will be here.  It is bittersweet for us.  He even let me take a picture of him on his last first day!

Through the years, he has progressed from using a walker to crutches. Surgery and AFO’s have helped to correct the toe walking.  Thousands of hours of PT have stopped the “W” sitting.  He still talks constantly, and he definitely has a way with people.  He learned English and uses as many words a day as he can.  He has learned so much and has worked so hard to be successful in school.  In addition to his CP, he has been diagnosed with ADD and Low Vision. Everything he does requires so much more work on his part than it does for other students.  Yet, he has persevered and taken the classes that he needs so he can go to college.

So, ready or not, it’s here!  Let’s enjoy this last year on the couch with chocolate!

I want to be like these parents!

Once upon a time, a very long time ago in what seems like another lifetime, I was a Special Education teacher.  No, this is not a fairy tale.  I really was - a long time ago- before kids.  My specialty area was working with students who were Deaf/Hard of Hearing.

In my short career span (I took a long time to finish college since the Army kept us on the move), I interpreted one year, I worked with children who were Deaf/Hard of Hearing, and I worked with students who had Learning Disabilities.  In any of these positions, I had to interact with the families a lot.

I had the opportunity to work with some great families.  Some of these families were so amazing in the support of their children that I used to think, "If I ever had a child with special needs, I want to be like this family."  

Here I am.  We do have a child who has special needs, so my husband and I have tried to copy some of those traits.

*Disabilities do not define the child!

S's CP is very much a part of his life; however, we know that he is a teenage boy, first and foremost.  CP is not an adjective that describes him.  It is a medical condition that he has.  

*Stand your ground!

I applaud the mom who stood up for her beliefs in an IEP meeting even when the majority of the team felt she was wrong and tried telling her that.  She stuck to what she wanted and never caved.  Way to go mom!  [Side note:  I knew this mom outside of school.  She was a very quiet woman who didn't like conflict.  Yet, she stood her ground.]

We have had to sit in IEP meetings and go against what the rest of the team thought would be good based upon their experiences with our son.  I maybe don't have as much teaching experience as you do, but my husband and I have a lot more "parenting S" experience than the team does.  It's a matter of knowing when to stand your ground for the good of the child.

*Acknowledge my child's abilities.

I applaud the parents who wanted the school to acknowledge what their child could do rather than focusing only on what she struggled with academically.  This family knew that their child could be successful if she had an individual aide.  The school's response to this request was to offer "special" transportation when this family was clearly within walking distance of the school.  This mom dug her heels in and told them no.  The parents were successful and received the support they wanted for their child.

We have always stressed S's abilities.  We have told the schools/teams what tools he needs to be successful.  I don't believe we have ever told a team he can't do something.  We also had a school system (CA) offer to provide "special" transportation.  We asked how the other kids in the neighborhood went to school.  We were told that they walked.  Guess what?  S will walk (or ride in his wheelchair) too.

This same mom mentioned will always stick in my mind.  She became extremely passionate during one particular meeting.  I remember her husband gently placing his hand on her hand and telling her it would be okay.  She told him it wouldn't.  She came and talked to me after the meeting, and I told her I understood where she was coming from.   

Fast forward approximately 6 years, that same scenario was playing out between my husband and me in a meeting where we were listening to the most ridiculous psychologist report being read to us.  Okay, I was not so calm and I knew it.  I grabbed my husband's knee, so he knew that I was incapable of speaking calmly and nicely.  I did ask one question.  After the meeting, I asked him if I had been "rude" (I may have used another word.).  He told me, "No.  But it was very clear how you were feeling."  

*Provide information to the team.

Thank you to the family who brought information that was requested to meetings to help the team (including the parents) make good decisions for this child.  They provided input on how things were going at home.  They listened to  concerns we had at school.  We all worked together for the good of the child.  I remember celebrating so many "successes" with this family because they had worked so hard with their child and for their child.  

We have always tried to provide the team with any information that we felt would be helpful to them and their understanding of S and what he needed to be successful.  By doing that, we were helping S.  

*Hand carry records when PCSing!

As a teacher working with military families, it was great when the families hand carried records (IEPs) or any additional information that would give us a glimpse of this child until we were able to get to know him/her and receive records from the previous school.  The families who notified us ahead of time made it much easier for us to make sure we were ready to provide necessary support right away.

As an Army family, we always hand carried all information about S to our next duty station.  We called the schools ahead of time  - two of the three school systems responded appropriately by asking questions about S.  We have multiple 3 ring binders filled with information on S.  We affectionately call these books "The Great Big Book of S."  

*Show appreciation!

Families who have shown their appreciation can make a teacher's day (it can be a kind word, a note, etc.).  Most teachers really want what is best for your child.

We always made sure to show our thanks to everyone who worked with S.  There were a lot of people who made sure he was receiving an education.  It truly has taken a village to educate him! Even though he has been homeschooled for six years and starting our seventh year, we have not taken this journey alone.  S also knows the importance of showing thanks to those who work with him and help him become a successful person.  A kind word or note are free, but they can change someone's day!

I had some great experiences as a teacher, and we have had some great experiences working with teams while sitting on the parent side of the table.  These experiences have been beneficial to us whether dealing with schools, therapists, or doctors.  

I will be on the couch with chocolate as I sit here reflecting upon the wonderful people who have crossed my path to help me and my husband become strong advocates for S.

Linking up with:

http://www.weirdunsocializedhomeschoolers.com/