Feeling Disillusioned ~ GI, Developmental Ped and Low Vision Specialist

It has been a busy couple weeks getting back into the new school schedule and tackling all the Fall medical appointments.  Reagan and Cole have enjoyed the first few weeks of school.  Reagan is in First Grade now in Mrs. Kee's class.  Amazingly enough, Reagan had Mrs. Kee her first year of preschool at Potowmack Elementary School in 2011 (at 2 years 4 months) when she was substituting for Mrs. Torry Verrill.  Reagan has a new Occupational Therapist, Kelly, and a new resource teacher, Mrs. Roach but has the same physical therapist from last year, Katie.  Reagan's favorite part of school this year is doing science experiments!

Cole has Mrs. Torry Verrill this year and it is his third year of preschool at Potowmack Elementary.  He is very excited to be back in school with new friends.  He has a new primary teacher, new vision teacher, Stephanie, and new occupational therapist, Kelly.  His favorite part of school is getting to ride the bus - 739 and 751.

Our Fall appointment schedule started with a follow up for Cole with the GI, Teresa Desanctis, who is a nurse practitioner.  She found my spreadsheet with Cole's Mirilax schedule very helpful but was concerned that he still goes a day or two without stooling.  She said I need to double up the Mirilax any time he goes a day without.  Finding the right balance to prevent accidents at school is challenging, but we're figuring it out.  She wants us to follow up with the doctor again in October.  Unfortunately the head aches and vomiting have continued intermittently.  I've been in communication with the neurologist since it is clearly not constipation related and we have a follow up appointment scheduled next month to talk in more depth.  Unfortunately everyone is at a loss right now.

Our next follow up appointment was with Susan Lansbury, the Developmental Pediatrician.  Overall it was a good appointment and she said, "he is a completely different kid."  She was happy to see him able to sit in a chair and focus during the appointment.  She had me complete an ADHD survey and asked me to have his teacher and Occupational Therapist complete the survey and fax them to her as well.  She also wants to review his IEP and provide feedback.  We will go back in 6 months to touch base again.  Nothing truly earth shattering, but nice to have someone who is willing to review the IEP and provide feedback.  Ultimately we are keeping this relationship in case he does need to be medicated for ADHD in the future.

Our latest appointment was with the low vision specialist, Dr. Alibhai.  As I drove to this appointment, I had high expectations for a productive meeting.  After having numerous discussions over the summer with vision specialists I was hoping to discuss whether Cole should learn braille, or start pre-braille learning tasks.  I thought we were going to talk about doing a Learning Media Assessment and CCTVs to determine what technology may be a good choice for him.  Cole's Teacher of the Visually Impaired (TVI) from school came to the appointment which was the first time we'd met.  She is very knowledgeable, very responsive and has a great way of connecting with Cole.  We spent over an hour discussing Cole's plan and I left feeling like we just sat at a red light the entire time.  Long story short, Dr. Alibhai and Stephanie said he is too young to do a Learning Media Assessment because he can't read yet.  Dr. Alibhai said I need to work harder at letting Cole be a kid and stop worrying about how he's going to learn in Kindergarten.  "I'm not worried about this.  He's a smart kid and you shouldn't be worried either."  Although when I talked about his tasks in Kindergarten he had no knowledge of the curriculum, the worksheets or the homework requirements.  My biggest concern in wanting to determine a solution is because we will need to 1) meet to determine the solution 2) advocate for funding 3) make the purchase and integrate the technology and 4) teach him/the teacher how to use it.  I would like the solution determined before the end of this year so it isn't new to him in Kindergarten.  Although I would prefer professional input, if I'm not going to get the support necessary, I know there are iPad alternatives that could be implemented more quickly that may be a good choice.  I've already setup a meeting with Cole's teacher for Friday to discuss next steps and her perspective on everything.  Dr. Alibhai's perspective was, "well if he seems to like Brialle then teach him, can't hurt."  What I don't understand about that comment is that it doesn't just "HAPPEN".  It would require modifying the IEP and justifying it.  While I don't disagree that it can't hurt, it can if he's getting pulled out from the classroom and missing curriculum.  I am feeling very disillusioned, but I'm trying to take a step back and breath.  I will make it clear in the Spring that a solution needs to be implemented before the end of this school year.  If that means I'm given a new title, "Implementation Manager" SO. Be. It!

As I sit down to write this post, I find myself thinking about a day early in my career and fresh out of college.  I would go to the gym at 5:30am, be in the office by 7am and was ready to take on anything handed to me.  I had passion for what I did and excitement to learn (hence having two Masters degrees).  I remember one day making a positive comment about a problem to which an elderly man on the project looked at me and said, "it's ok, one day you will have experience behind you that will make you as cynical as the rest of us."  I remember thinking how sad it was that experience would turn someone cynical and I was determined not to allow myself to be swallowed into that self defeating abyss.  And yet 20 years later I find myself teetering on the edge of cynical.  Cynical with the lack of answers.  Cynical with the school system for being so focused on the "now" and unable to see the big picture.  Cynical with people who seem determined to tell me that I need to relax, sit back and "see what happens".  I am certain that without the interventions that we have taken, our children would not be as high functioning as they are today.  And while I appreciate that my children are but ONE on a large list of patients, I am their mom.  I am their advocate, the one who picks them up when they fall and the one who gives a high five for a job well done.  The doctor even said sometimes you have to allow children to fail in order for them to tell us what they need.  And although I partially agree, when I think about all the things Cole will tackle in school, why would I want him to fail at seeing a worksheet when I could give him technology so he can see it? That's like showing up for a test and not bringing a pen?!

With that said, I recognize I take every challenge on like a project. I spend a lot of time driving to doctor's appointments, sitting in waiting rooms, and listening to doctors…all in the hope of getting answers. Of learning more.  Of taking some morsel of information that will help me teach my children how to reach their potential and feel good about themselves.  Today I was told, "maybe you should just let Cole be a kid."  Why?  Because I mentioned that Cole knew the difference between a pentagon and a hexagon at the age of 2.  Not something we pushed - but something he gravitated to.  He loves shapes!  But the point the doctor was trying to make was that perhaps by letting him be a kid and not trying to solve the problem before it happens, that he will learn more by "winging it."  I recognize I can't always predict and prevent the problems that will inevitably lie ahead, but there is a fine balance of allowing failure in order to find success and allowing a child to feel unable to do something that everyone else can do.  And while I agree conceptually, I find it personally challenging to not prepare ahead.  So I will try to throw caution to the wind and "wing it" even though it is against everything in my being.  I will try this on for size and see how long I can tolerate the personal discomfort.  I think I can…I think I can…and as I always tell Cole, "don't say I can't, say I will try but I might need help."