You will have significant experiences.
I hope that you will write them down and keep a record of
them, that you will read them from time to time and refresh
your memory of these meaningful and significant things.
Some may be funny. Some may be significant only to you.
Some of them may be sacred and quietly beautiful. Some
may build upon another until they represent a lifetime of
special experiences.
- Gordon B Hinckley

Thursday, January 31, 2013

Where We Are Now...

Dear Family and Friends,

There is hardly a day that I’m at work, that one of my coworkers doesn’t ask about how Everett is doing.  In fact, just last week, a “day shifter” from another unit stopped me in a staff meeting to ask after him.  I am always very touched by this...that after these three years, people still remember and think about him.  I also ran into an old friend just after the holidays who was kind enough to tell me how much she enjoys reading updates on Everett.  She said they not only help her keep tabs on our entire family, but that she also loves to hear about how he is progressing.  This also touched my heart and inspired me to write this new update.  I never know if I am boring/annoying people with these.  But for me, these updates serve many purposes.  Firstly, they are Everett’s “baby book,” since no other baby book really fits him anyway.  Secondly, they are a place for my thoughts and feelings, a place for reflection and appreciation.  They help me remember how far we’ve come and how much we have to be thankful for.  

Everett is 3 years 3 months.  On his third birthday, he aged out of all his therapy programs and we had to say good-bye to Marla (his Child Development Specialist) and Kate (his physical therapist).  It was difficult to let them go.  They’ve both been with us since Everett came home.  These women have been such a part of our daily routine that it feels like something is out of place.  I’ve always called them my “baby manual,” but joking aside, that’s what they are.  They guided me through every big milestone of the past three years and to be suddenly cut-off from them has been hard.  Of course that isn’t to say that we don’t still talk and text.  I’m afraid they are with us for life, just like Everett’s nurses and doctors.  But I do miss seeing their smiling faces each week.  

Marla, Everett, and Kate

The loss of Marla and Kate has left Everett’s continued therapy needs up to Zac and I to fulfill.  We knew that this was how it was going to be.  Everett was assessed right before his birthday and he was at actual age or above actual age in every category except gross and fine motor skills (where he is at a 24 month level) and speech (where he is at age level but is still lacking proper utilization of language) .  Therefore, he didn’t qualify for continued therapy through Tri-Counties Regional Center (that’s who’s been providing his therapy all this time).  So we started to traverse other government programs looking for assistance.  The first place we tried was California Children’s Services, but it was determined that Everett’s deficiencies were not severe enough to qualify for their program.  So next we pursued therapy through our school district (which is allowed even though he’s not of school age).  We were accepted into the SNIP (Special Needs Intervention Program) Speech Therapy Program, which gives Everett 45 minutes of group speech therapy twice per week.  The class operates like a preschool of sorts, with almost a 2:1 ratio of children to teachers.  They work on word pronunciation, sentence structure, question and answers, logic, ABCs and 123s.  The kids range in age from 3-5 years old, some with co-existing challenges and some with just speech delays.  We’ve already seen improvements in just the three months he’s been going there.  The big change for me is that this program is NOT parent participatory.  Meaning, I just sit there and watch.  It’s been hard...very hard, seeing as I’ve been involved in all of Everett’s therapy since the beginning.  I have a difficult time watching the teachers interact with him in a way that is different from what we do at home or what Marla and Kate did when they were seeing him.  I often want to speak up for him, to let them know they are doing it “wrong,” but the goal has shifted from integrating Everett into our family to getting him ready for school.  So I am constantly reminding myself that the rules have changed.  I’ve also been having some difficulty in dealing with the teachers directly.  I think Marla and Kate knew how to handle me, knew my heart, and what it needed.  The new teachers don’t know me and I often find myself almost offended by what they have to say.  That probably isn’t fair to them as they are only doing their job, but I need things sugar-coated, I need to hear the good before the bad, otherwise I don’t hear anything.  I also need to feel empowered...I need to be given solutions and action plans to solve Everett’s issues, so that I can feel like I am able to help him.  Otherwise I just feel helpless.  And I can’t stand feeling helpless!  Like I said, it’s been hard.  

The other component of this has been attempting to find a physical therapist to work on Everett’s gross and fine motor development.  We were warned by Kate that this would be difficult.  There isn’t a lot to choose from here.  Everett’s physical needs weren’t severe enough to qualify him for physical therapy through the school district, so we’ve been pursuing physical therapy through our private insurance.  It has been slow going for the last three months.  We have an HMO plan so we had to be seen by therapists that our insurance contracted with, none of whom had experience in toddler physical therapy.  It has been really frustrating to go to these appointments, pay the copays, only to have the therapist tell me that they really don’t have the expertise to treat him.  Arg!  So, one day I pulled out the phone book and started calling every physical therapy business listed, asking if they employed a pediatric physical therapist.  Finally, one business gave me a reference to a therapy unit designed especially for special needs kids.  After speaking at length with the owner, all I can say is that this place is literally my dream come true for Everett!  They have a HEATED pool for aquatic gait training and a suspension jumping unit to help with jumping skills.  The owner has ex-27 week micro-preemie twins so she knows exactly where we are coming from.  What a breath of fresh air!!!  Now, the only barrier is that this company is, of course, out of our network.  So we are in the process of trying to get the therapy approved.  I know we are in for a fight.  But I’m used to fighting for the things I think Everett needs.  The owner told me that I may have to be a “Big B” to get the insurance to approve the charges.  I told her that when it comes to my kid and what he needs, I can be the “Biggest B” in the world!  I am just impatient to get him there.  I think it will help immensely with Everett’s running and jumping (two things he is still having difficulty with).  

As I think you can tell by the tone of this update, at times I find myself fatigued by all this therapy, assessments, appointments, and specialist opinions.  I think a part of me, maybe larger than I realize, thought that by now we would be on the “normal” track, that Everett would be caught up and things would be simpler.  After some deep thought, a few tears, and a harsh look at reality, I realize that we are probably always going to be walking the fine line between “normal” and needing extra help.  That’s not to say that we don’t think Everett isn’t an incredibly intelligent and active child.  This is obvious to us!  But I also think that things with Everett are never going to be easy.  I think we are always going to have to be watchful and vigilant about identifying areas where he might need help.  All this is ok, of course.  I’m willing to do any amount of therapy that he needs to help him lead a fulfilling life.  I just wish, if only for him, that he didn’t have to work so hard to achieve things that come so naturally to others.  I am starting to see his frustration now, his understanding that he can’t do some things like other kids do.  And at times it breaks my heart.  BUT, all these challenges are shaping him into this amazing person that he is going to become.  But for him, I sometimes just wish life was easy.  I don’t want it to come off as if I’m not appreciative because I know things could be so, so much harder.  Our troubles, when compared to many, are very insignificant indeed.  But I have my moments of feeling...tired...of hearing what is wrong with my child.  Like any mother, in my eyes, he is uniquely perfect!  

Our Christmas holiday was magical this year as Everett really understood about Santa Claus, christmas trees, presents, carols, and being good.  His excitement brought back all that childhood wonderment that seems to fade with age.  And we were blessed when I unexpectedly got Christmas eve off work! YAY!  We also hosted “Bollinger Family Christmas” for the first time, with 30 Bollingers at our house for the day.  It was a BLAST (until our septic tank backed up...yuck!).  The New Year found us ordering Everett a second pair of glasses which arrived today.  He actually wore them...really wore them with no issues, until about 5 o’clock when I walked into the living room to find them missing an arm.  They lasted all of six hours!  That has to be some kind of record.  So tomorrow, I will take them back and pray that our vision coverage has a warranty on them!

I hope this update finds all of you well and blessed in 2013.  We are always thankful for the many blessing we have in our lives, including each of you.

With Love,

The Bollinger Family

No comments:

Post a Comment