Friday, 29 April 2016

Jack Davis- an oldie but a goodie

I love being a mom, best job I've ever had.  Jack is going to be 5 very soon.  So I am feeling a little nostalgic.  Cannot believe our lanky little boy used to be nothing more than a little bean...he has changed our lives in every way imaginable. 
Jack's story:
Mommy and daddy wanted you very much.  Mommy had been dreaming of having a baby her whole life (ask Grammy!).  But first, we were taking a trip to Italy!  And THEN we were going to settle in and hope for the best.  You, my love, had other plans!  Mommy had just started a new job and was working in the office for awhile before she started working from home, and on her second day in Elkridge, there was a blood drive.  I always used to donate, so thought nothing of it.  When I was done, I stood up and wham, down I went....completely passed out.  I felt really bad for several days and this had never happened to me before.  What was the problem?  So on my lunch break I popped by Target and picked up a pregnancy test, just to be sure that wasn't the issue.  Took it, saw nothing, dropped it in my purse and didn't think about it again.  Welp, the next day on my way to lunch, I went to grab my keys, and accidentally pulled out the test.  Ummmmm......what was that other line doing there???  Apparently you wanted to go to Italy with mommy and daddy!!! And you did.....mommy missed out on some great wines, but daddy took one for the team and tried them ALL for me.  Sheesh!  You were worth it!
Our first "official" portrait....mommy at 16 weeks in Sorrento, Italy

You were a pretty easy baby to grow....other than some major pukey moments....namely on our plane trips to and from Italy.  Especially when a woman on the way there had a heart attack and mommy ended up taking care of her!  We ended up rerouted to Newfoundland to drop her off at a hospital and that flight lasted no less than 13 hours.  Never fear, mommy got a lovely gift basket from the airlines for her efforts.

You were due on May 11th and I was bound and determined that you would not be late, I had a wedding to be in 3 weeks after that.  I was a walking machine!  On May 4th I started feeling contractions, no biggie, that had been happening for awhile.  I called your Aunt Sarah just to chat, and told her I was having more Braxton-Hicks.  We talked for about 45 minutes.  Before we got off the phone she said, you know, you just had 4 contractions while we were on the phone, you might want to start timing those.  It was about 11:30 in the I started writing them down while I was working....I still have those pieces of paper.  They were steady all day, but not increasing, and not painful.  I was getting pretty excited though....maybe this was the real thing.  Daddy was supposed to go to happy hour with coworkers that night, I told him he might as well go, nothing major doing at home.  Mommy took a long walk by herself, and noticed things were picking up a bit.  In true expectant mommy fashion, I came home and in a panic, put together the "brag books" I had been planning for Grammy and Mimi, just in case this was my last opportunity to do so before Mother's Day.  Good thing I did.  Because all of the sudden....PAIN.  I called daddy and said "what's up?  feel like maybe making your way home?"  So he came home, and we took a nice long walk....our last as a family of two.  Two neighborhood dogs jumped up on me....I think daddy almost barked at them....he was feeling a little protective that night :)

Since I had been a labor and delivery nurse, I was bound and determined to avoid one of those "false alarm" visits to the maternity suite.  When I went in, it was going to be the real thing!  We knew the rule---  contractions 5 minutes apart, lasting 1 minute for 1 hour.  Mommy waited through 2 hours before she called....even then her OB was skeptical.  But in we went....and we didn't leave!  Mommy didn't want any medicine, but panic set in, and in went the epidural.  I didn't know about hypnobirthing yet.....I recommend it to EVERYONE.  I won't go through all the gorey details of your delivery....but I will say that daddy, as you know, fancies himself pretty old-fashioned and had been mumbling about not wanting to be in the delivery room.  I told him that was not an option, and he then said he was going to stay at the head of the bed and wanted to see nothing.  Ummmm...yeah.  Your daddy was right there, cheering me on, and didn't miss a thing.  And he didn't pass out either.  When you made your entrance into the world, you didn't cry (although both mommy and daddy did).  The doctor put you right on my chest and you just stared at me, without a sound.  It was one of the most precious moments of my life.  But everyone was a little worried that you didn't they took you over to the warmer to check you out.  They suctioned you, they gave you a little oxygen.  Still no crying.  But you were breathing, and looking all around.  You apparently needed to take it all in and didn't want to ruin the moment with all that racket those other annoying newborns make.  Mommy couldn't see you during that time and has never been more worried in her life.  Those moments are what pushed me to avoid an epidural the next time around...I wanted to be able to get up and check on my baby, make sure everything was ok.   

Your aunt and uncle and mimi came to see you right after you were born.  Your mimi was so proud to have her first grand baby!  

The hospital did this funny thing....after 2 days they told us we could take you home.  Seriously?  OK, I know I was a live-in nanny to an infant, that I am a nurse, that I have a sister who is 12 years younger than me who I spent a lot of time caring for....but couldn't these people see that I had no earthly idea what I was doing??  Below is your nursery...see?  I was all "prepared"....cue the snickers.  Grammy and grandad were still in California when you were born....daddy had just held a baby basically for the first time....mommy was terrified to take you home!  But home we went....and now 5 years later, you're still alive, so we must be doing something right.  

look how tiny you were!

I love this picture of you next to daddy's hand.....

Early memories:

Your Aunt Helen seeing you for the first time and saying you looked like Uncle Joe (this was not a compliment, however, it was temporarily true....within days you were the most adorable baby ever)

The nurses in the hospital trying to comfort you, the doctor trying to comfort you, the lactation consultant trying to comfort you, grammy trying to comfort cried for 12 hours your second day of life.  Daddy and I have always thought that you were making up for your birth day.

Daddy driving 25 miles an hour the whole way home from the hospital (this is how we know he loved you right away!)

Riley the dog knocking over furniture in your nursery while trying to check you out.

Daddy making Hamburger Helper Beef Stroganoff more times than mommy can count those first few weeks (playgroup ladies....THIS is how mommy meals came to be :) )

Daddy and I taking you for your first walk in the stroller.....I lifted the wheels over every bump.

Watching the clock until your next feeding because I was terrified that THIS was the time I wouldn't be able to nurse you (I also wanted to wear the nursing shield on a chain around my neck---- seriously freaking out)

Granddad and Aunt Kate looking at you through the window when granddad picked Kate up from college because Kate had mono and granddad  had a sinus infection

Interviewing nannies...thinking one was way too young and inexperienced.  Asked her to pick you up out of the swing and she opened the guard bar---hey, I didn't know that opened!  (sigh)

Sitting upstairs in my office my first day back at work and crying the entire time.  You, by the way, were perfectly fine.

Daddy and mommy freaking out that you were sucking your thumb and trying to "stop it".  Note that your brother sucks his thumb....we encourage it.

You laying on your changing table for 30 minutes at a time staring at yourself in your little lion mirror.

Almost anyone will tell you that you don't know what it is to be a parent until you become one.   It's true.    It didn't matter how much "child care" experience I had, I didn't have parenting experience.   I didn't know that feeling of being one of the two people on earth responsible for a human life.  The feeling is completely awe inspiring and overwhelming.  So many new parents go into this experience thinking they know what it is all about (myself included), they see family members do it, they see friends do it, and assume they have a clue.  They don't.  The amount of love that we feel for you is indescribable.  I would do anything for you, I would give up everything for you, you and your brother are everything to your daddy and me....
How did we go from this......




 To this?????

We are so lucky to be your parents.  I love everything about you- your smile, your kooky laugh, the way you turn around and give us that "look" when you know you are being naughty.  your amazing robot, lobster, crab, and scorpion imitations.  The way you make up animals like brontoscorpios (oh crap, I just googled it...
Ok, never mind.  The way you teach us about animals that we never knew existed,  ask us to make their sounds, then look at us like we are morons when we do it "wrong".  The fact that you gobble up fish and asparagus and refuse spaghetti, and choose strawberries over ice cream.  The way you say "mommy/daddy, I love you, you're my best friend"  You usually want something, but honestly, we don't care, it's just so nice to hear.     The way you shriek "get Natey!"  every time we try to let him walk somewhere.  You are so worried he's not going to follow us.  The fact that you call me your princess every time I put on a dress, or come over to me and demand that I take my hair down so I look "beautiful".  The way you scream "mommy is the driver" every time daddy goes anywhere near the driver's seat of mommy's car.  Oh, and your genuine concern for Fergie and those "humps on her back" (do they hurt mommy?  I won't touch them.  If I ever see them I will just run away).  Guess mommy better put Raffi on the stereo in the car from now on.  You are an amazing, loving little boy.  You are ten times smarter than either mommy or daddy.  And you are going to keep us guessing....that is one thing mommy is completely sure of!

Wednesday, 20 April 2016

When the "Least Restrictive Environment" May Be Causing Harm

Have you ever had a complete aha moment as a parent?

 No one ever gave me a guidebook for my kiddos, and as Jack’s BCBA pointed out last night when we were talking, even if they had, it would have been the wrong one J.  I have been struggling so much as a mom with Jack’s behavioral issues, both at home, and particularly at school.  How did he go from being a “pleasure” at his old school to a constant behavioral problem at his new school?  Did they withhold information at his old school or sweep issues under the rug?  Or are they antagonizing him at his new school?  I have come to the conclusion that it is likely somewhere in the middle.  I know that at his old school, they had known him for years, and likely did brush some behaviors off as just “Jack being Jack.”  But I also feel that things are moving in the wrong direction at his new school as well.

So why? 

What am I missing?  I felt like I was so careful to find a placement for Jack that would keep him in his least restrictive environment, allow him to interact with his typical peers absolutely as much as possible.  I felt strongly that this was what he needed because he had such good relationships with his peers at his old school.  I think I may have been wrong.  I forgot some very important factors.

I feel like an idiot- because I couldn’t see the parallels between my son and myself until last night.  I focus so much on his autism that his anxiety, particularly his social anxiety becomes very secondary.  But anxiety is the thing that he and I have most in common.  Particularly in social situations.  See, I understand fully his desperate need to feel accepted, to feel a part of things.  I understand just how heavily perceived rejection weighs on him.  Because I feel the exact same way.  I faced a huge rejection several years ago and it was quite literally one of the hardest things I have ever dealt with in my life.  It has taken me years to be able to just sit with it, accept it, and not allow it to overtake my thoughts on a daily basis.  And I am a grownup!

At Jack’s old school, he had friends.  The kids and staff knew him; they understood his challenges and knew that he was fundamentally a good kid.  Were bad behaviors really ignored?  I don’t think so, I think the emotions behind them were just known, accepted, and dealt with appropriately.  His peers loved him for the most part.  This is why I thought it was so important for him to stay among typical peers in his new placement.

I left a huge piece of the puzzle out of the mix and didn’t even realize it.  The new staff and the new kids are never going to accept Jack the way he was accepted at his old school.  They don’t know him, and they are honestly not taking the time, or making the effort to “learn him”.  Entering a new peer group as a child like Jack at an older age is an entirely different experience.  8 and 9 year olds are much more aware of social differences and behaviors they might consider “odd” than kids were in kindergarten.  They react very differently to Jack than the kids at his old school did.  And here’s the thing- he notices.  He feels it to his core.  He feels rejected, and he feels targeted.  So what happens?  Fight or flight.  This is already overactive for him (and his mama)- and this perceived rejection only ramps him up further, or as his new math teacher says “jacks him up” (ha).  He goes on the defensive, which becomes offensive to others.   So his behaviors escalate- they remove him from class- he feels rejected- he acts out, and on and on. 

 I received a call from his principal earlier this week telling me that they would like to begin to pull him out of class for science and social studies, which were the only academic areas in which he was mainstreamed.  I get why they are doing this- with his current behavioral patterns, he is disruptive in class, he is getting nothing out of it, and he is taking away from other kids’ learning experiences.  In the long run however?  This is doing even more damage in an already difficult situation.  More rejection from his point of view.

It is difficult to talk with Jack about school.  Lately he comes in the door literally saying “I don’t want to talk about my day”, which means of course, his behavioral sheet is going to be not so good.  I have been able to peel the layers away a bit just in doing things like taking walks with him, or sitting with him at bedtime.  His offhanded comments have led the way and I am starting to see things from his perspective.  Small things like “no one laughs at my jokes anymore” (like they did at his old school), and “I just feel left out”, and “it just makes me so angry”.  I don’t think it’s the academics that are causing his struggles anymore.  Most of what he is feeling is social and it is the biggest burden of kids with “high functioning” autism.

He can detect social rejection, and has no idea how to handle, or remedy it.  He wants peer relationships, craves them.  With Nate, he honestly could care less at this point, and so going in and out of “typical” classes and back to his autism classroom works rather well.  It is the least restrictive environment as it is intended.  I am starting to think that the least restrictive environment situation we provided Jack with is actually restricting him more than a technically more restrictive environment would.  In saying this, I mean that I think he might function better in a setting that is special education oriented, where he would be “among his peers” all the time, but his peer group would be different.  In a place where he would feel a part of things and accepted all the time, instead of constantly feeling singled out, pulled out, and in his mind rejected.  Maybe going to a private special needs placement (with on par academics) makes more sense for him and his sense of well-being.  Maybe I was focusing way too much on keeping academics at the forefront, when in fact, that is not the biggest area of struggle.  We received his report card and IEP update yesterday- his grades have gone up a full letter grade in the small group setting even with all of the struggles he has been having.  He is making “sufficient progress towards goal” in all academic areas of his IEP.  The only areas in which he is not making adequate progress are his social-emotional goals.  I think that is very telling.  We have another IEP meeting on May 17th and clearly we have some things to address.