Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Tuesday, September 3, 2013

IEP at Three

Three years ago, Jack was just three weeks old and struggling each day to breathe, to develop outside the womb, to survive.  We were given statistics about outcomes for a 28-weeker, and being the realist that I am, I took them to heart.  Each parent responds to this information differently.  Jeff chose to believe that everything would be fine.  I, on the other hand, spending day in and out in the NICU, watching Jack stop breathing and turn blue, couldn’t seem to forget that just hours before his birth we had to discuss survival rates.  Once you have that conversation, you might push it to the back of your mind, but it’s always there.  And for me, it has changed my life in many ways.  I will always remember those moments, those days.  They often affect the decisions I make.  They keep me from losing my patience and allow me to live in the moment with Jack as much as possible.  But, if I’m being honest, if you told me three years ago that Jack would be the boy he is today, the realist (some say pessimist) in me would never believe you.  While were in the NICU, I couldn't see past the NICU.  However, those days in the NICU have since taught me the importance of both living in the moment, each day, and also looking toward the future. 
Jack, three years ago.  (9.3.10)
     Who is Jack today?  Jack is smart.  S.M.A.R.T. smart!  I know it, but each time a certain phrase comes out of his mouth or he answer a question about something that I had no idea he knew…blows me away.  Jack is silly.  Just this summer he told me his first joke (although I’m not sure he realized it yet)!  He loves to laugh and is starting to develop a great sense of humor.  Jack is energetic.  This boy is on the move all day long.  From playing with trucks, to running outside, to “cooking” in his kitchen.   You’d never know he is still considered to have “chronic lung disease.” Jack is brave.  He loves water slides and walking on top of walls.  I can’t think of a time when I sensed fear in him.  Jack is all these things and so much more.   Jack is everything Jack is supposed to be.  There’s a lot of pressure in the preemie world for kids to catch up and be just like their full-term peers.  I fell into that trap early on in this journey, but have since learned that, obviously, no two kids are alike.  Nor do they meet milestones at the same rate.   
Jack, at his 3rd birthday party. (8.2013)
     For that reason, Jack has an IEP (Individualized EducationPlan) at three and is officially diagnosed with a speech and language impairment.   Basically, for his age, he does not speak or use language at the same level as other three-year-olds.  In addition to his speech issues, he shows delays in fine and gross motor skills.  Since his discharge, Jack has had therapies from Early Intervention – Occupational, Physical, and Speech - to work on these delays.  These professionals came into our home to support Jack in his development and helped us look out for any delays he might encounter as he grew.  Part of me believed that by age 3, Jack would no longer need these services.  But, another part of me also believes that he is meant to reach the milestones at his own rate (mostly because of his prematurity) and no amount of therapy will make that happen faster.  That being said, the therapies he does receive are supportive and fun, for Jack.  Yet, no parent wants to hear how behind their child is or how their child needs to work harder to do things that other kids just do, which is a big part of the IEP process.  However, I also would have been deeply disappointed had he not qualified.  He has had so much support the last three years, I didn’t want him to lose any of the progress he has made.  I also hope that Jack might get all the services he needs now and then might not need them once he enters Kindergarten.  We’ll see.  At age 3, services transfer from Early Intervention to the local school district, so Jack will receive services outside the home (at an education center) and at pre-school.  (More on pre-school next time!)  I know, when looking at Jack, these delays aren’t always obvious, which often makes people wonder why he needs these services.  It all stems from prematurity, believe it or not.  When babies are born early, all the muscle movements and brain development that normally occurs in the womb is suddenly interrupted and then expected to develop in less than ideal circumstances (harsh, loud, bright NICU environment).  For example, at age three, Jack still does not jump.  One might think, “Does it really matter if he never jumps?”  Maybe not…but what does matter is that his muscles have not developed the ability to do so.  Even though I rarely jump, I can jump and my muscles know how to do that, which in turn help me move in so many other ways.  So, it’s not necessarily the end result or skill that matters, but the muscle (or brain) learning how to do certain things.  Jack also has fine motor issues, which don’t really affect his daily life at the moment.  But, if his fine motor skills don’t develop properly, he could possibly have trouble in school with writing and art class, etc.  So, Jack will begin to receive all three therapies, based on his IEP.  Before Jack was born, I would have been surprised to hear that prematurity would still affect a child at age 3.  As I've mentioned many times, my education in prematurity is constant and continuing.  And again, we choose to respond in a way that best supports Jack, for today and for his future.  I may have not been able to believe what life with Jack would look like at age three back in 2010, but I can predict that I will always choose to recognize that prematurity affects Jack's life and we will do whatever it takes so that Jack does not have to struggle later in life because of his early arrival.  

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