Monthly Archives: September 2013

Great STP Parent Report!

I have to share some wonderful news!  We had our son’s IEP today.  I went in prepared with a DRC form and all of my STP info.  The feedback we got from all of the attendees, was amazing.

His Teacher said that she has him strategically placed in the room where she has great eye contact with him.  She said his behavior has been excellent.  He is staying in his seat, raising his hand to participate,  & completing his class work.  The only times there have been minor issues are during recess when the campus supervisors are in charge, rather then the teacher. She even said that if she were to fill out the DRC, everything would be YES.  She also said that she has already seen how the extra praise / positive reinforcement helps him out during class.

The Psychologist said that in her observations this year, she has seen the same things as the Teacher.  He needs work on his fine motor skills because his writing is terrible.  An Occupational Therapist is going to do a thorough evaluation and he will be recommended for Occupational Therapy.  The Hughes Bill evaluation is being put on hold because of the improvement in his self management.  He will be approved for counseling this year, to just help him stay on track.

The Speech Therapist is going to recommend speech continue because our son really loves going to speech and being in a small group of only 8 people.  He lost his 4 front teeth this summer, so that has set his speech back a little, but once the big teeth grow in, she is sure he will get right back on track.

The Principal has always taken a special interest in our son, because he can see how sweet he can be.   The principal is going to continue to give him some extra attention to help keep him on track.

I attribute so much of this improvement to the STP, counselors that worked with him so diligently with him and the parent training that we attended.  I am so proud of our son, what he has accomplished and his great start to the school year.  I feel like shouting from the rooftop!

Guest Blogger – Teri M. Book RN, MSN, CPNP Pediatric Nurse Practitioner

Hi, my name is Teri Book. I am the Nurse Practitioner at The Center for Autism and Neurodevelopmental Disorders, a division of the department of Pediatrics at the University of California, Irvine.  Our Blog Host has asked that I write a guest blog for her, she says she thinks I might write something that could help others…so here goes.

I have worked at The Center (previously known at as For OC Kids) for 12 years now.  I started here at the request of Dr. Pauline Filipek, a noted expert in autism, after she diagnosed my daughter with autism.  My daughter was 7 years old at the time.  I met Dr. Filipek at a Nurse Practitioner conference, where my suspicions were confirmed about my daughter’s unusual behaviors.  And so began a long journey with ended up with me being here.

I have learned many things in the 12 years I have worked in this center.  The most profound happened on my first day, when I met a mother who was a nurse like me.  She had a very involved child who had acted out and had been recently moved to a county program to help manage her many inappropriate behaviors.  The thing that struck me about this woman was how normal she was.  I think for the longest time, I felt that it was somehow my fault that my child was so unusual.  That if I was a better parent, or if I did things differently that she would seem less weird,  In my heart without really recognizing it, I think I believed that I was a less than person because of my inability to reproduce a “normal” child.

In this one interaction and in the many interactions over the next few months I came to realize instead of how resilient parents of children with autism can be.  I began to realize that I belonged to a group of intensely dedicated individuals, who face challenges on a daily basis.  I remember Dr. Filipek saying one time:  “I don’t know how she does it?”  My reply was: “She doesn’t have a choice.”

And so began my awareness and appreciation for the strength and character of the parents I work with everyday.  I am blessed with the opportunity to see people making a difference in their child’s and family’s lives.  Is it easy…no.  Would we be happy to step aside and let this opportunity pass to some other unsuspecting slob…you bet…well may be not.

Let me share a little of what else I’ve learned as a parent/professional.

  • That love means accepting.
  • I’ve learned patience both with myself and with others.
  • That one should be careful not to live their lives based on society’s idea of what it means to be successful.
  • That what doesn’t kill you does make you stronger
  • We are all much stronger that we realize until we are put to the test.
  • I have learned that kindness is a minimum criteria, it is so easy to give but often seems in short supply.

I have appreciation for others in a way I never would have learned without both my daughter and the foresight of my friend and mentor Pauline Filipek.  Today is a good day to be happy, no matter what your circumstance, because that’s all we really have.

Why Blog?

This week I was introduced to a colleague who shares my passion for supporting families with behavior challenges, and shared book with me.   As I opened the book, one of my most favorite quotes was shared by the Author… “If I am not for myself, who is for me?  If I am only for myself, what am I?  If not now, when?”  Hillel, the Elder.

To answer the question,“Why Blog?”  I choose to share a couple events that occurred in my family this week.  We recently met a new Therapist with whom I was able to have a short visit.  I believe we initially struggled with our understanding of each other, and naturally I will not go into details due to privacy issues all the way around.  However, I’d like to think the conversation ended with me conveying my preference of a “collaborative” approach to helping my child.  I really like this Therapist, whom I think will make a great impact on my child’s progress and be a vital part of our TEAM!  Teamwork and shared information is an important part of any successful strategy; I believe.

Secondly, I will share about my son whom many you know from STP.  I got the results in the mail last week and he got a perfect score for Math for the State (STAR) Test for 2nd Grade.  At first I thought, “It’s only 2nd Grade, they probably all get perfect scores…”  However I was led to understand that this really is a big deal!  So the celebrations ensued!  This morning when he woke up, he decided that he did not want to follow his weekend schedule.  He was still feeling celebratory!  He felt we should skip it for today and was a bit upset when I explained to him that this is only his second week of school and stressed the importance of the discipline and structure that is derived from maintaining his schedule that will help him succeed for the weeks ahead.  Even though he was upset, he struggled through his calming strategies (believe me, he really dug in) because he wants to watch three “Goosebumps” episodes later today.  He successfully calmed himself down and proceeded to read for one hour and draw for one hour.  A part of our process is he needs to share what he read and drew with me.  He wrote and illustrated a book called “Halloween-Land.” This book is about an amusement park, where in order to gain admittance with your two tickets you have to drink “eyes and guts slush.”  You get on a “scream-a-coaster” and take a ride on the “coffin cruise” on top of “disgusting water way” with ketchup and mustard being squirted on you and a vampire popping out of a coffin.  His illustrations were priceless!  There are so many levels of success here and I praised him profusely for his effort!

So to the point of Blogging…  We are the voices of our children.  I feel very passionately that together, collaboratively, we can make a difference on their behalf.  So often some of us haven’t a clue where to begin, but what I admire about our STP families is that whether we researched or happened upon the program, we began!  So, what next?  I believe ideas exchange is great to explore.  Also, validation of methods, strategies or suggestions that are working is always important data to document!   “See, in all our searching, the only thing we’ve found that makes the emptiness bearable, is each other.”  You may recognize that as a quote from Carl Sagan.  We can easily add frustration, exasperation, and sometimes hopelessness to the word “emptiness” in that quote.  Knowledge is a powerful tool.  Shared knowledge can derive enormous success.  I do not see the value in cultivating adversarial relationships with any person or organization supporting my child.  I personally believe that time can be better spent collaboratively finding solutions.  I will also, always make the point that any success for my family, my child, has to begin with me.   As Parents we are the driving force for our kiddos!   Also, if one family experiences some success, sharing goes a very long way to helping another.

There is a value to most of the programs, systems and educational steps that exist, supporting behavior solutions for our children.   What I have found in my home is that my children evolve.  I’ve found it most important to develop some understanding of where they are.   I explore solutions for them at the various points of their development or evolution in their behavioral growth-process.  I believe that there are some specific strategies that are paramount for beginners.  I also believe that consistency is critical.  As I explained to my 8 year old son this morning, two weeks into our program is way too early to declare victory and stray from a working strategy.  I insisted that he stay the course.  In doing so, I have taught him the value of consistency and discipline. This helps to shape his way of thinking!

What I know for certain is this journey to support our kiddos resembles a marathon, not a sprint.  My decision to Blog came from this knowledge.  It is derived from years of experiencing and realizing that it is the journey and not the destination that matters in the long run for our kiddos.  Showing our children that we understand their behavior and consistently supporting and helping them through the coping steps is the only way they will succeed.  My hope is that a few of you may be willing to take this journey with me as Parents facing similar challenges, and build a powerful, positive, voice.  My hope is that we will be able to help other parents and their children, who will be venturing along this path.   My hope is that we will be able to help mainstream behavior solutions, so our kiddos can play at playgrounds, parks, school-recess areas and attend movies, play dates, birthday parties, with support systems readily built-in for them…  “If I am not for myself, who is for me?  If I am only for myself, what am I?  If not now, when?”  Hillel, the Elder.