Essay: The Absence of Normal Frees Us

Notwithstanding the fact that I've sworn off reading "special needs blogs" - this essay written by the father of a child who is severely developmentally delayed is an excellent read, in my opinion.

The Absence of Normal Frees Us

All About Eric

Eric started school today. I know, I know ... most of you are still in summer school or just finished your regular school year.  My kids are on a modified year-round schedule so they always start back after only a seven week summer break.  I actually like it.  If I was independently wealthy, didn't have to work and could spend my summers living in a beach house on Coronado Island, I might feel differently about summer being so short. Because that's not the case, I'm happy to have Eric back in school - it keeps him entertained and gets him out from in front of the television set.

This school year I decided that we were not going to fight with Eric every day/night after school to get his homework done and get to bed.  So, I drafted up a contract that listed all the "rules" for the school year.  When I went over it with him and told him to initial and sign, his response was "a contract is something you have to agree to sign."  Good point.  He recognized the number one thing you need with every contract - consideration.  (He'll make a great lawyer some day.)  I was asking him to agree to a set of rules, with nothing in return for him if he complied.  We came up with a reward system that is payable at the end of the first quarter of school (in October).  After we agreed upon the terms, he agreed to sign the contract.  One of the rules was that he has to sit at the dining room table to do his homework.  I told him that the TV has to be off when he is working on his homework (but failed to include this as a term of our contract).  Eric immediately recognized my lapse and pronounced "LOOP HOLE"!  (Sometimes, he's too smart for his own good!)

In any event - Day 1 and we have compliance.  It helps that he doesn't have homework yet. 

A few pictures from Eric's day:

 Waiting for the bus 

(he is growing like a weed and is getting really tall)

First time taking the bus to school 

We ended our day with swimming lessons.  As ridiculous as it sounds ... living in Arizona where at least seventy-five percent (I'm guessing) of the households have swimming pools - Eric doesn't know how to swim.  (we don't have a pool).  Not only can't he swim, he is terrified of the water.  We've been wanting to get him in swim lessons for years, but could never get it done with our work schedules and Jack thrown in the mix. (Lame excuses, but that's my story and I'm stickin' to it!)  He's only had lessons for three weeks.  His first lesson, the swim instructor had to literally strong-arm him into the pool.  He told us the older kids are harder because they are stronger and they know more.  But, they also progress faster.  Tonight was only Eric's third lesson and he's progressed to the point where he is not afraid of getting in the water.  I told him he is going to take lessons for at least a year before he can quit. Let's hope he progresses out of the "Otter" class by then - where most the kids are two years old!

Waiting for class to start

swimming while holding onto a bar

At the end of class - he's smiling ... that is good!

Arriving home after swimming - it's been a long day!

Blog Roll

I read a lot of blogs.  I read blogs that cover a wide range of subjects and topics - funny blogs, informative blogs, blogs about sick kids, healthy kids, typical families and families of kids with chronic health issues.  Recently, I started following a couple of blogs that are focused solely on raising children with special needs.  For most of the last twelve years, I've avoided the whole special needs arena as much as possible.  I've stayed focused on my role as the parent of a medically fragile child - not as the parent of a child with special needs.  I suppose that I take this approach because, in my mind, medical issues can be dealt with, managed and, in some cases, resolved, while special needs (according to MY definition of "special needs") are permanent and life long - they can be accommodated, but not resolved. Staying focused on the medical issues makes me feel like I have some control. (ha!)

One of the special needs blogs that I've been reading is written by a mom whose son is making the transition from being a child with special needs to being an adult with special needs.  She discusses the many issues faced by parents of older children with special needs.  It's an excellent resource and very well written, however, I've come to the conclusion that I can't read it anymore.  In fact, I need to stop reading all solely "special needs" focused blogs. I'm left feeling like a complete failure for all I don't do for Jack (some of these parents are definitely "super" parents) or  I'm depressed as hell at what the future holds.  Sometimes, it's all just too much to think about.  I prefer the head in the sand approach.

So, my blog roll is now a few blogs shorter, but I already feel like a weight has been lifted off my shoulders.  Does that make sense?

I still love to follow the blogs of my friends and fellow trach moms.  I love their humor and I enjoy keeping up with what's going on with them and with all their kids.  I love reading how they find balance in this crazy life, I love reading about the progress their incredibly "special" kids make and I love seeing their pictures.  They make me laugh, they make me cry and most of all they make me feel like I'm not alone.  I love all these ladies!

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On a completely different note, we went to Eric's "meet the teacher" tonight and checked out Eric's classroom and schedule.  One of Eric's subjects this year is Mandarin.  They are teaching the kids Mandarin!  How cool is that?!

Now, it's time to get my medically fragile, special needs, happy, loving and absolutely wonderful young man ready for bed!

Love ya'

What's Going on Around Here

Not a whole lot going on around here, thus the lack of posts.  When I look back at old blog entries, I sure had a lot to share when I first started writing.  Now, it's just every day life.  But, that's okay.  I know that I enjoy keeping up with my friends' every day lives on their blogs and I'm guessing you all do too.

Summer break is winding down for Eric.  He has two more weeks off and then he's back in school. He'll be in 4th grade and attending a new school.  I'm nervous about the change, but Eric seems okay with it.  Boys are just so much more laid back about things than girls, you know?  Eric has been in the gifted program since Kindergarten - which is a self-contained class in our school district.  The only real difference with the gifted kids is that they are doing work a year ahead of their actual grade.  I suppose they challenge the kids a little more as well.  This year our school district - after being pushed by a group of parents, established a Gifted Academy which will focus on science, technology, engineering, arts, and mathematics (S.T.E.A.M.)  There was a lottery as to who got in and Eric was one of the "lucky" kids.  It's going to be intense, but what I like is that it will have an "interest driven personalized learning plan".  Eric's strength and interest is in art and I know this program will give him an opportunity to really grow and expand this strength.  How well he'll do with the other subjects has yet to be seen.  If life becomes miserable for him and/or us, we'll re-evaluate whether the Academy is where he should be.  Eric will also be riding the bus for the first time, so lots of changes on the horizon for him.

Mary leaves for college in about six weeks.  She'll only be about two and a half hours away - far enough away, but not too far.  There's lots to do to get her ready (and lots of money to spend in the process!)  She's trying to get in as many hours as she can at work so she has plenty of spending money while away at school.  We rarely see her as she's either at work or spending time with her cousins or friends.  I guess it's called growing up and moving away.  

Hilary is registered at our local community college for the Fall and she's (somewhat) actively looking for a job.  She's slowing figuring out that she needs to "get a life" (her words) -- as in get a job, go to school, make friends and experience the world outside of the four walls of her bedroom.  Maybe by the time she's 30 she'll have it figured out! 

As for Jack, he's keeping us hopping.  When I got home from work today, Mark and Kristi informed me that Jack needed to be bagged multiple times throughout the day because his sats kept tanking.  I suspect he's dealing with atelectasis - although I'm not sure why.  I upped Jack's vent settings, increased the water in his trach cuff and we'll be using the Vest more than once a day for awhile.  It's a bit unnerving even for Kristi (who has been caring for Jack for 9 years) when Jack has episodes of respiratory distress.  They make Mark nervous as hell as well.  I don't get too excited because I know Jack usually comes out of them - plus, I'm probably the most comfortable messing with the vent and the cuffed trach. 

In other Jack news, I've decided after a three year break, I'm going to get him back in school.  If Jack was a typical kid, he's be in 7th grade this year.  THAT'S JUNIOR HIGH!  Because he's junior high age, he switches schools, so I thought I'd give a different school a chance with Jack. I'm still keeping him at home, so it will be homebound services.  I'm hoping to get speech therapy, occupational therapy and a teacher to come out to the house.  I'm not optimistic and I'm not up for a fight, but I'm willing to give it a shot to see what the school will give him.  Jack is ready for more interaction and activities in his life.  

On a more somber note, I'm meeting with someone from Ryan House this week to discuss the whole DNR thing.  NOT that I expect to have to use it anytime in the near future. However, it has to be dealt with at some point in time, so I decided now is the time.  I realized in talking with other parents of kids at Ryan House that this is something that they have already addressed and we had not.  As Jack gets older and his disease progresses, Mark and I need to think about what we want if something should happen.  Not a happy topic, but one that is very much a part of our reality.  

On a happier note ~

On a ridiculous note ~

Apria delivered this huge box to our house today

which included 

approximately four supplies!  Seriously?! They could have used a box one-quarter the size and saved me from having to find a way to dispose of the damn box.  You really wonder who they hire to work in their warehouse.  I think you must fail the common sense test to qualify to work there!

Well folks, that's all I've got for now.  Thanks for checking in!

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Postscript: There's something amiss when "DNR" and "bagging" my kid through periods of "respiratory distress" constitute "not a whole lot going on around here".  How very skewed my perspective of life has become! 

The Never Empty Nest

Along the same lines as my "Where is the Book" post, below is the link to a recent article published in Good Housekeeping that was written by the brother/brother-in-law of parents of two children with special needs.  Kuddos to Good Housekeeping for giving space to a story about special needs issues - something you rarely read about in mainstream magazines.  What a special person the author is to not only "get it", but to also share his feelings about it.

The Never Empty Nest