The DCN... Blast From the Not So Popular Past

While I was carpooling C to swim Thursday afternoon, one of the assessors from the DCN (The Diagnostic Center Northern CA).  called.  R, the hubby, took the call. The assessor was cleaning out old files or something and  came across F's file.  He wanted to check and see how he was doing.

I haven't thought about the DCN since 2010.  Here's what I know about them. They were described to me as the "experts" on the hardest to serve special education students, the most complex of children.  The was supposed to the best place to do F's assessments in all areas of need.  We were referred by our District because I had requested so many assessments.  Appropriate assessments were seriously lacking in his IEP documents. I'd have to pull the big box of records to review the list, but I can tell you it was in any and all areas of potential need.  Thanks to our advocate, we tried to be as thorough as possible.

Here's what F experienced.  To be assessed by this "highly skilled team of experts" F had to travel.  The trip was over a 100 miles and 2 hours for him.  F hasn't traveled in years.  F hadn't been on a school campus in over a year when they referred him here.  F has asthma complicated by the typical lung issues that come with having such severe cerebral palsy.  It was the first few days of June he was scheduled for two days of testing.  We would arrive the day before. He would test over the next two days. I'm sure I tried to negotiate with them coming to us locally, but they I was told no.  This is how it's done for these kids.  Strike 1 against F for good assessments.

F's van was packed from top to bottom with all of the supplies he needed to care for him for that short period of time.  Thankfully, our nurse, Beth was able to come with us.  I couldn't have made the trip alone.  It's a challenge to care for him out of our element.  We loaded up the day before arrived at the designated hotel, which wasn't close to the DCN.  I literally had to rearrange furniture to accommodate F.  We were all exhausted.  F did not sleep most of the night.  I'm sure he probably awoke a little disoriented since he hadn't traveled in so many years.  I wake up that way sometimes when I'm really tired and someplace new.  So it's reasonable to believe he would be too.

Exhausted the next morning we are expected to show up bright and fresh for the assessments.  I called them to tell them we were running late.  I really didn't want to go.  F was wheezy and congested.  I'm sure it had to do with trees being in bloom and all the car exhaust from the drive and traffic.  I am completely anxious and stressed and can already tell F isn't feeling his best, strike 2.

We finally arrive the team greets us.  They introduce themselves. Then take us to these little rooms that barely accommodate F's wheelchair.  Then they send us to the assessment room and it's even smaller.  We barely fit.  They have me read the paper to him.  He is wheezy and congested and sounds horrible. He's refusing to open his eyes and interact.  I can't blame him.  We do our best.  Then they have me leave and Beth come in.  They try to work with the two of them.  I don't think much changed for how F was behaving. Why should it?  He's legally blind and in an unfamiliar environment with tight spaces and bright lights, not optimal for him.  He's having difficulty breathing. It's already documented in all of his school records that he fatigues easily.  So lets see didn't sleep, difficulty breathing, recovering from long drive... conducive to accurate and appropriate assessments?  In my mind I hear these words "We are the experts on the hardest to serve children"  Really?  It doesn't take a rocket scientist to figure out that so far you've set him up to fail!

The other unimpressive thing about this agency that "specializes in assessing the hardest to serve children" is that there was no accommodations on site for someone with such significant physical disabilities. There was no room available to get F out of his chair for changing or to stretch out. They came up with a solution by sending us to some apartment on campus, but we had to walk by all of the landscapers cutting hedges, using mowers, and blowers. One word, asthma.

They insulted him.  Strike 3. If you want my son's attention.  Don't baby him and certainly don't try to make him do preschool stuff.  He won't do it.  They tried to have him match colors using dishes, a plate and spoon or something. This was when Beth, his nurse was with him, because I interfered with the process.  Did they not pay attention to the fact that he's had a g-tube and feeding pump FOR HIS ENTIRE LIFE?  Really dishes!  How about something more appropriate and relevant to his life?  I seriously doubt that someone who is NEVER going to sit in front of a plate of food or hold a spoon really cares about what color the plate and spoon are or that they are a plate and spoon. But I bet if they'd played a cd or a cassette, he could correctly identify which one was which.  Perhaps an audio story, a mystery, sports story, biography, etc.  I'm sure he could tell what type of stories they were.  But they chose dishes and his name.

I could go on and on about this experience, but I won't. My point is that the "experts" may not know crap about a child like yours because they are so unique with their group of disabilities, method of communication, and coping skills. The only experts for these children tend to be those that are close to the child. The ones who see their potential, believe in them, inspire them, and love them.

If your child has been assessed at the DCN or any Diagnostic Center, I'm curious how it worked out for your child.

Full-Inclusion... the Early Years

F was in a full-inclusion preschool the last half of his second year of preschool.  He loved the inclusion.  He had a strong teacher.  She focused on communication and assistive technology (switch access).  Unfortunately, he only spent about five months in her program.  When he aged out to kindergarten she strongly encouraged that we continue on with full-inclusion.  She felt that type of program could and would be really successful for him.

F's kindergarten year was hard. It had nothing to do with the school and the program. I suppose part could be due to the program, but I was really preoccupied during this time to really pay that much attention.  Things appeared to be going well and progress reports seemed to show he was progressing.

F's sister, Cienna, had been diagnosed  retinoblastoma when she was three weeks old.  She was now two and diagnosed with extra-occular retinoblstoma (a very, very bad thing).  This put her cancer in a more serious category and took the priority of trying to save her vision to trying to keep it from spreading.  She would start treatments during April of F's preschool year and it would go on through the summer.  Her treatments would end, not because she responded well, but because her young body could not tolerate them any longer.  Shortly into F's year of of kindergarten, she would be diagnoses with metastatic retinoblastoma on a routine MRI.  We were all devastated to say the least.  Cienna was handed a death sentence...literally.  So we were all a little distracted and I'm sure F was too.

So F's kindergarten year was pretty much a wash.  I can't say if he met his goals or not.  I can say that being around those healthy kids at school was probably a highlight and an escape for him at times.  I can look back now and say I should have never sent him to school that year. He should have stayed home with Cienna and I.  They were very close and her decline and subsequent death would be challenging for us all.  Cienna would pass away February 5, 1998.  After that time, I believe F's probably slept his kindergarten year away, or at least faked sleeping it away for the same reasons I could not get out of bed.  We were overwhelmed by sadness and grief.  Again, looking back he should have stayed home with me.

First grade through half of third grade F would continue to be a full-inclusion student.  He enjoyed his peer friendships and interactions.  He also enjoyed the curriculum.  The problems were that there was little follow through with the instructional aide due to lack of support with his goals.  While they should have been modifying curriculum and focusing on communication for him, F spent the better part of those years being an accessory to the classroom instead of a participant... if that description makes any sense to you.

They tried to work on communication by focusing on yes and no using his strength of a head turn.  However, the individuals involved in implementation, did it so inconsistently or documented it incorrectly that they were constantly changing which head turn was for yes and no.  Poor F had to be so confused. Granted communication was hard for us at home too.  We had no definitive yes and no and we were probably bucking the system every time the school changed their method and didn't communicate it to us.

So consistency in program was the hardest obstacle in full-inclusion.  Accommodating him in his wheelchair and his need for equipment for toileting and such was also quite a hurdle.  Then when we began to have a hard time finding a home health nurse for staffing they didn't want him to come to school.  They tried to tell me he couldn't come, even though it stated no where in the IEP that I had to provide a nurse for F to participate in a school program.

Curriculum support was nonexistent.  There was no modification of the curriculum at all combined with the inability to confirm his understanding made reinforcement impossible.  Although, I will say that I have learned the last few years that he was a sponge, still is a sponge, soaking up knowledge and information all around him.

The instructional aide was changed shortly after we no longer had a nurse available to send him to school.  Or due to family circumstances chose to use our nursing partly for support at home.  The district nurse told me this was done because the new aide had much better qualifications.  She was a respiratory therapist and they felt she better suited his medical needs. She was over confident because her dad was a paraplegic so she thought she knew it all about transfers, F's needs, and care.  On the two days a week I did send a nurse she talked trash about me the entire day to my nurse and to my son.  I tried and tried to get her removed, but the district deemed her appropriate.  That is until she called me to pick him up for emergency medical care because she broke his femur while moving him from a stander.  As of a few years ago, she still had her job.

So in a nutshell, full-inclusion meant for my son was absorbing knowledge and information by being around it.  Inconsistency in goal implementation, lack of support services, equipment, and curriculum modifications necessary.  He was well socialized and excelled in making friends even without a consistent ability to convey his understanding of them.  The "we can't tell if he understands us"would be consistent all through his records because if you can't speak, are in a wheelchair, and visually impaired the instructors, support staff, and administrators automatically assumed he is incapable of understanding the English language. He was also assumed to be very low functioning intellectually.  I was even told at times that I only read into his behavior what I want to see.  That I've convinced myself that he is smarter than he is. It was "coincidence" that he laughed appropriately at jokes or in audio books that were funny. It was such a struggle and a fight for me.  I can only imagine how F felt.  He was more like a classroom mascot, but these years in middle school would be far better than the time he spent in a middle school special day class.

IEP's and Consultation Services

I realized when I did my post about being prepared for IEP's that I left out a very important thing.  That is consultation services, direct services on consult model. Call it whatever you would like, if it's a service that contains any word close to "consult" it's a bad thing.  I don't know how "consult" services were explained to me for many IEP's, but the program specialist talked a good talk.  They list the services and next to each one how many visits and duration.  On paper it looks like a lot of services when you see all those numbers next to PT, OT, Speech, etc., but it's really just for documentation if it contains the word consult.

What I would learn when I requested all of my son's records would literally shock me.  Okay, maybe I was just clueless and naive. Maybe the way the program specialists through the years talked in circles and prettied things up convinced me it was something it wasn't.  I'm not really sure.  All I know is I felt duped.  I felt like I had been sold a product that really wasn't what it was.  Consult model means that whoever the provider is, let us use PT, never has to come and see your child within the classroom.

For example, The IEP would state 6 visits for 30 minutes per year and either be marked consult or have it written next to it.  The PT would call and speak with the teacher on the phone about my son.  Inquire as to whether they needed any support or assistance and that would count as a visit.  The PT never stepped foot in the classroom, but it was document that my son received PT based on that phone call.

As it was explained the PT, or whatever service you choose to insert, would work with the classroom staff and they would be implementing the services.  I'm not really sure how this qualifies as physical therapy, occupational therapy, speech or vision services. All I know is throughout my son's records I saw a lot of remarks regarding these types of visits.  And yet, when my son failed to meet goals it was always his fault.  It never had anything to do with the fact that his services were the equivalent of a chart review and phone conversation.  This is why you should be very mindful of your child's records.  If your child isn't making progress and the IEP team can't really account for why the student isn't making progress without blaming the student, it's time to take a hard look at the goals and services. I wish I'd known this  very early on.

Please know that I don't believe that every child is short changed in the education system.  I have just a tainted perspective.  I hear far too often about more children falling behind or about teaching staff or districts who talk about implementing things for students that never come to fruition.  It happens a lot.  As parents and advocates of these children we really have to be very diligent at staying on top of things.  The education system will not serve our children without our involvement and support.

Being Prepared for IEPs

Although we no longer participate in the IEP process, I thought I'd share some helpful information that I learned along the way.  There are many aspects to the IEP process.  I am not an attorney or all-knowing specialist regarding them.  I merely learned some very hard lessons through our IEP process.

The IEP in a nutshell is your child's documented guide to their education.  It should be based on appropriate assessment of their individual needs and strengths. One thing I discovered, and it's a big thing, HUGE really... is that my son had been negatively cognitively labeled without one cognitive assessment by a highly-trained and qualified individual ever being done on him.  The level, or lack of cognitive levee, was assumed and it did a lot of damage to his education and intellectual performance. If only I'd known then what I know now.  Particularly since I trusted individuals within the process to assist and guide me.  They were not on my side nor F's side.

So in a nutshell I'm going to list some things that I wish someone had told me.  I cannot at this time go into my son's long drawn out education and hit the highlights.  If you visited my About My Blog page then you know that I want to cover a lot of territory.  For now, I just have to put things down that I think can be the most helpful and beneficial.  If you have questions, please comment or contact me.  F and I are pretty open about our experiences.  You can email us at:

Lemonadeandporcupines@gmail.com

Key things that I think very parent should remember:

• Your IEP team is payed and employed by a school district or third-party provider.  They do not work for you.  They provide a service and that service is controlled and dictated by the employing district.  They all appear to have your child's best interest's at heart and many educators and DIS providers really want your child to succeed, but and it's a big but, they may have their hands tied and you may never know it. 
• Document EVERYTHING in writing.  A small conversation you have had with any provider, teacher, administrator should always be documented and submitted back to them for verification.  If they do not correct the document it becomes fact and a part of your records that you maintain for your child.  If they are doing a good job they will also make those documents become part of your child's school records.  This documentation, no matter how small or trivial you may believe it is, can be your best asset should you need it later.
• Always communicate your requests for assessments, progress reports, IEP's, etc. in WRITING.  Always copy all participating parties and administrators (teacher, program specialist, princiipel, etc.).  Document, document, document.  Notice the emphasis on DOCUMENTING!
• Always record your IEP meetings.  You must give notice to the district in writing, and if memory serves me correctly, 48-hours notice is required.  But you should know the meeting is scheduled and be able to plan for that. 
• Assessments should reflect what your child CAN do and their strengths.  If they reflect that your child is happy and has a supportive family that cares them... that's not really about what your child CAN do, nor is it an individual strength.
• It's a good rule of thumb to ask them to give examples and to show you what goal implementation looks like. I like them to support their motives and intentions with regard to goal setting and their plan for implementation.
• For children with health needs, remember to make sure you have your doctor's orders as specific as they can be and include them in the IEP details.  Don't just fill out medical forms and expect those things to be addressed as part of the IEP.  If it's not in the IEP it doesn't have to be done.  For example, two-person lifting.  My son had an aide that worked for him, put in place by the district, she did not think she needed to perform a two person lift.  She would subsequently end up fracturing my son's femur during his school day.  To this day, we do not know exactly what happen, but we have an idea of how it occurred, confirmed by our son. Two-person lifting was not addressed within our IEP.  
• Your child's records, request them.  Read them, get to know them.  Look at what has been done and/or not done.  You want everything IEPs, assessments, health records, transportation records, medication logs, etc.  There is no piece of paper in your child's file that is not important until you have looked at every single one.  It takes time, but trust me you will learn a whole lot about your child's education or lack of. I discovered my child wasn't receiving an education.  He was participating in childcare. 
• When my son failed to meet their crappy goals he was blamed for it.  It was never the teacher's fault or the DIS providers.  It was my son's failure.  According to them it had nothing to do with the fact they didn't follow through or implement the goals.  Nor was it because their goals were not based on assessments.  According to the IEP team it was because my son was unmotivated, unteachable, and unhealthy.  Nor did they ever take into consideration the learning environment. 
• Don't sign an IEP at the meeting.  Take a copy of the IEP home with you.  Read it add notes and make corrections to it as needed.  Make sure it clearly represents the meeting along with your input and participation.  The district I was in, only documented what they wanted documented in the IEP.  Once I became skilled at this... it frustrated them tremendously because it began to create a history of what they were NOT doing.  I began to get control of my child's education and it made them uncomfortable.
• If at any time you feel your child is not safe at school, do not take these feelings lightly.  Go with your gut.  Make unannounced visits at the classroom.  You can come up with a valid reason to stop by and see your child.  Catching a glimpse of what's happening when you arrive unexpectedly can tell you a lot about the classroom.
• If your child comes home crying multiple times in a week and they are nonverbal, try not to brush it off as just being uncomfortable.  This happened to us and I merely though my child was in pain.  It wasn't pain it was boredom and stress he was under in the environment he was in.  Listening to screaming kids and and fearing one that was aggressive was not a positive learning environment for him.  If only I'd investigated further.
• Know that you are your child's best advocate.  You may have to be a squeaky wheel, you may have to invest a lot of time, but you know your child best and never let anyone convince you that you are not the expert on your child!

I chose to hire an advocate to teach and educate me about my child's records and the IEP process.  She came to the table with a different eye view.  She made all of the difference in how I saw my son as a student. The knowledge I gained from her was invaluable. It still helps me to this day. 

IEP's are stressful. Mine became so contentious that it gave me anxiety to deal with the program specialist.  I tried and tried to negotiate with the district. I documented my son's case meticulously.  I even filed compliance complaints.  However, educating my son was not a priority.  I eventually hired an attorney and worked  the process with representation.