Friday, 9 September 2016

What A Difference!


It has been nearly 2 months since I have written.  I have been afraid- afraid to say out loud that things have turned a corner.  I am still afraid, as I know we are likely still in the honeymoon phase at Jack's new private school.  But you know what??  What the hell!? 

Our bright cheery boy is coming back to us.  I really don't know how else to describe it.  We are three weeks into Jack's new placement, and while I expected to feel a bit of relief in knowing that the staff at this school was better equipped to handle Jack's challenges, I hardly expected to see him feeling so.... EMBRACED.  There is really no better word to describe it.  And HE feels it. 

Today both dad and I were waiting at the front door when he got off the bus.  I asked him how his day was.  He said "amazing".  It hit me- he used to say that ALL THE TIME.  I haven't heard it in a good two years.  I am no fool, I know I won't hear it everyday, but today it brought tears to my eyes. 

It's sad that it took what it did to finally get my son into a setting where he is accepted.  I had so much anxiety putting him on the bus the first day that I sat on our doorstep and cried for a good 20 minutes after he was gone, and he's in 4th grade- not kindergarten!  It was a release for me though, of all the tension of getting him to this place, of all the fear I have had over the last year.  It was the beginning of all of that just melting away.  He has an hour bus ride each way now, which was a big concern for us- he has a lot of anxiety regarding the bus and changes in routine.  The other day I told him it was time to get on the bus and he said, "oh man!" and then he said "oh wait, I like the bus!".  His bus driver is great with him, and other than the fact that he has picked up continuously singing "bird is the word" from one of the older kids on the bus, it has been a very positive experience.  In fact, one day a week ago the bus driver literally forgot Jack- it's a new stop on his route this year and after he made one of his old stops, he just kept going.  He did turn around and come back and get him- but amazingly, Jack completely kept his cool.  I don't know how to explain it, but it's like he just KNOWS that this is his place.  There is no other way I can explain the rapid changes we are seeing.

Some of the differences at this school are so simple, they are not for "special needs" kids so much as best practices for all kids that have gone by the wayside in public school- everyone has a snack time, everyone works on a token system, everyone gets breaks.  I remember when I first moved to NJ in 5th grade, one of the classes there worked on a token system- everyone wanted to be in that class- all kids can benefit from a reward system- it makes me wonder why it isn't more common (other than the amount of work involved in doing this for HUGE class sizes in public schools).  All kids can benefit from all of these changes frankly- my kid just really needs them in order to be successful at this point in his life.  Because everyone in the school is operating on the same system, he doesn't feel singled out, he doesn't feel "special", he just feels like another student, and that is what he has always wanted.  Frankly, we "sell" school to kids as their jobs- why shouldn't they earn money for it???  Jack earns money on his "debit" card every day for behavior, which he can spend in the school's stores (all run by students, he is an employee at a store as well) on Fridays.  I get a "balance sheet" every day showing how he did, how many dollars he earned, where he didn't earn, etc.  I have to say that there has not been any mention of any aggressive verbiage or behavior since I believe his second day.  It didn't take long.  He just needed this.

This came from one of his teachers:
He is more and more comfortable with us, which is allowing his wonderful personality to come out. I have really enjoyed talking to him about planes and animals, he is always surprising me with fun facts about his favorite things! We are still getting to know Jack, but this week I have seen him more interested and willing to work with me. In math, while he might get frustrated, he is quick to use a suggested strategy and then try again. He is really impressing us with how willing he is to try these new and more difficult things. I have really enjoyed our time with Jack so far, I look forward to getting to know him better this year! Thank you for sharing him with us! Have a wonderful Wednesday.

After last year's constant worry and negative feedback, yes, I did indeed cry.  My baby is in a good place.  And all 9 IEP meetings were absolutely worth it for even one day of him experiencing this!!!!

If I could trust him not to internalize only the swear words in this at this point in his life, I would absolutely share this with Jack right now.  I have spent so much of my life trying to "make" other people like me, and so much of my life as a mom trying to help my kids fit in.  I am realizing that neither are likely to be effective.  I am at peace with that.  Happiness- that's what we're going for.


Monday, 18 July 2016

When The Educators Need To Be Educated

I have been struggling over the last 6 weeks, trying to find a way to describe what has been going on with Jack.  I am not someone who jumps on my blog and bashes people.  I also have been repeatedly thanked for my "grace" by the school system throughout this situation, and I do want to maintain my goal of taking the high road.  However I do try to be honest about our experiences as a family.  And I do want to share what we have been going through.

Before I do, I have a confession.  When Jack first started school, and we were successful in keeping him mainstreamed for several years, I really didn’t understand what all of these other parents were talking about.  We struggled in getting Jack the help he needed because he was labeled “high functioning”, but with the help of an advocate, we were able to work through that, or at least to an acceptable extent.  So why were so many parents of special needs kids calling public school a nightmare?  Fighting so hard with staff? 

All it took was one bad experience.  As a special needs mom, my children have attended 8 different elementary schools, (and they are only 6 and 9) not because of problems, but because different programs are just housed in different places.  For the most part, we have had completely positive experiences.  Even Jack’s initial elementary school, which has a reputation for being particularly difficult on special needs families, was over all very supportive.  When he was moved to another program this January, it was not because he was failing to meet or make progress towards his IEP goals, it was because the teachers found he made the most progress in a small group setting, which this new program was said to offer for all core curriculum.  And to be fair, the program did “offer” this. 

I wish I could pinpoint what happened.  Where it all went wrong.  All I can really say is that the new school was not prepared to handle my son.  That my son went from making progress in all IEP goals in a mainstream program (since pre K), to a “more supportive environment” and his progress completely tanked, per their report.  I say per their report, because we saw a very different child at home, one who made great strides in his ABA goals, one who continued to be able to socialize with his friends from his old school with some support, one who successfully participated in an adaptive team sport, and enjoyed it!  In school?  I was told that he was not “capable” of “being with his peers”.  He was fully pulled out for all academics, and often pulled out of the pull out (to a one on one setting instead of small group).  He was isolated- not able to eat in the cafeteria at lunch, something that was NEVER an issue, not even for snack time in pre-k.  Something that my 6 year old “severely autistic” son does daily at his school, because he is supported.  His IEP progress report in June showed that he was not making adequate progress toward any IEP goals except....handwriting.  Which by the way has always been the bane of his existence.  No matter what justification was given to me, my opinion remains that the school did not want to deal with my son.  They did not like that he, as my husband so eloquently put it “upset the apple cart”.  This was a new, small program, and when I toured the school back in December I was shocked by how quiet the classroom was- my son is not quiet.  He is not naughty- but he is not quiet.  I think this was not appreciated by some of the staff.  I think his need to socialize and unfortunately disrupt some of these other children was resented.  I think that any and all possible behavioral issues were emphasized and examined under a microscope.  When your child is at home on the weekend and you ask him to go to his room and do something and suddenly for the first time in his life he responds with “is that a threat?”, it is clear that someone has been asking him that same question. 

I am not a mom who puts her son up on a pedestal.  I have always advocated for more services for him, I have recognized his struggles and taken action as much as humanly possible.  That being said, this spring was the first time I have ever experienced the feeling of my son seeming to be targeted.  Things that he would say out of frustration in his old school setting were interpreted in the worst possible way at the new school and perceived as actual threats.  And while he definitely was trying to express an emotion or frustration, it was never taken into account that he was scripting, something he has done since the age of 18 months old.  He pulls statements from programs he has watched or books he has read, and puts them into his dialogue if it seems appropriate to his situation.  When he was younger it worked against him because he was using sophisticated vocabulary and after people heard that, their expectations of his intelligence became super high.  Now it works against him again because he is not just spewing facts anymore, but also trying to find a way to express his emotions, something that is very hard for many kids on the spectrum.  He chooses a quote that sounds threatening, and is reprimanded as though it was an independent thought.  Yes, it was inappropriate, I get that.  But was it meant in the spirit in which it was received?  Ummmm, no way.  I promise that my 8 year old is not likely to seek revenge on you, BUT he does like to watch My Little Pony, and they do say that in an episode….

I mean, when he gets upset at home and cries he says “tears run down his spiny cheeks”.  No, he does not have spiny cheeks, he is quoting from a book about a little porcupine that we read when he was two years old.  He is telling me “I am sad, so I am crying.”  And I get that, so I don’t look for whiskers, or god forbid quills!

I’m not suggesting he doesn’t have any behavioral issues, because he does.  As our children get older, they are not maturing at the rate of their peers, which SHOULD be a duh for all parties involved in their care, since they are “special educators”.  Our children’s atypical behavior, while it has not changed, does stick out more than it used to.  And in a new setting- they are penalized for it.  Inappropriately.  They are judged harshly, they are treated like “problems.” What I am saying is that while it’s not fair, and it’s not right, we as parents have to prepare ourselves for this eventuality.  It should not happen, but in a situation where someone does not know, or take the time to get to know our children, it is a distinct possibility.  We went to his most recent IEP meeting (last Thursday) and it was suggested by the central representative that he would be ok in a type II special education program (which means still housed in a mainstream school, with the opportunity to interact with typical peers, as opposed to a type I, which is a separate day school).  My response was this- he absolutely should have been fine- however after his and this family’s experiences this past spring, he needs time to recover. He needs to feel supported and have time build his self-esteem.  When you are treated like an "issue” in a setting where you used to feel accepted and even loved, it can be very damaging.  We are just now, in summer school, working through his tears each morning because he does not want to go back to school.

As a parent, this is not only heartbreaking, it is maddening.  I, as Jack’s mom, have been traumatized by this experience.  My level of trust in the school system has plummeted.  I am at risk of becoming “that mom.”  The one that feels the need to drop in for “surprise visits” to ensure my son isn’t locked in a closet somewhere.  The one who calls every time my son comes home saying something negative, to make sure everything is ok.  I do not want to be “that mom”.  I never was.  But my son has the right to an education in the least restrictive environment possible, and he has the right to expect fair treatment.  And without question, he was denied both of these things this past spring.  And he is my child who can talk to me!

At the  IEP meeting with his school back in May, something was said that I will never, as a special needs mom, forget.  In the presence of the least restrictive environment specialist, the school behavioral specialist, our IEP advocate, and Jack’s BCBA, we were told that this school’s program was there to support children with learning differences.  We were told that they were not “equipped to handle autism and all the support that is needed for autism.”  Our BCBA still brings this statement up frequently- as someone who has been in special education for over 20 years, she was shocked into silence herself.  I want to say this, for the record.  None of us are- equipped to handle autism when first we encounter it.  I can assure you that John and I were not equipped to handle autism.  And yet, here we are, doing it!  Autism is being diagnosed at a head spinning rate- a rate that is increasing each and every year.  If your school does not become equipped to handle autism, you will be doing a vast number of amazing children a horrible disservice.  My son is phenomenal- and he will be back in a mainstream school in the next few years god willing.  More education for mainstream educators is clearly needed, and needed quickly.  My son did not deserve to come away from this experience feeling like he was a problem.  And it will take years to get him past this.  Equip yourselves, because if you are supposed to help children with “learning challenges”, I can guarantee you will be seeing more children with autism in your program. 







Friday, 6 May 2016

Jack's Birthday- A Much Needed Reminder

Yesterday was my big boy's 9th birthday.  NINE!  It seems impossible, and yet he is creeping up on me height-wise (not the hardest thing to do haha).  Jack has been having so much trouble behaviorally with peers and teachers, we have been so worried about him.  Well, we still are. 

As most autism parents know, particularly Asperger's parents, birthdays are not necessarily something we look forward to.  Other kids birthday parties are hard enough- John recently took Jack to one and was texting me a blow by blow of Jack's struggles- my response?  Yes honey its like riding a bleeping roller coaster while going through the stages of grief all wrapped into one bleep package and tied with a snake.  So as you can imagine, Jack's own birthday celebration felt like walking into a landmine.  Last year he had a hard time at his birthday party- we had lots of kids there, we were at a farm, and he was just overstimulated.  The thing that put him over the top and caused a meltdown was getting a present he REALLY liked.  So what do you do about that?

I decided that in light of all the difficulties he is currently having, I was going to surround him with only people who make him feel safe.  People who, if he had a meltdown, would not be shocked, people who would be supportive.  This consisted of his grandparents, his BCBA, his and Jack's ABA techs, and his two best friends from his old school and their families.  It actually ended up being a pretty crowded house.  Mommy was having some sensory overload issues of her own!

Jack?  He did beautifully.  Thinking about it this morning brings tears to my eyes.  He was able to wait until everyone arrived before having cake with no issues.  He was able to verbalize that he didn't want the birthday song (a long standing trigger for him- the applause more than the song).  And because everyone around him knew him, they weren't surprised and were just fine with basically standing silently while he blew out the candle- and they didn't cheer- which is crucial.  No one asked why the cake was decorated with the koala brothers, an African crested porcupine, a rooster, and a sopwith camel.  It was JACK'S cake, so duh, lol.  He was able to sit and eat cake with all of his presents looming without losing it.  This is a big deal for any kid really, for Jack it was huge.

He was soooooo happy to see his friends.  He was bouncing around everywhere, but made sure to introduce his "best bud" to his mimi (they actually went trick or treating together last October, but whatever).  "Mimi, I need for you to meet my good friend ___"  It was priceless.

Another amazing milestone for him?  Opening gifts in front of others.  Every holiday, he and I go through the do's and don'ts of receiving gifts.  And it has been getting better, he hasn't said "I hate that" in a long time.  But he usually doesn't pause to look at his gifts either- he rips through them, doesn't look to see who they're from, etc.  And yes, I know all kids do this, but it's just more extreme with Jack.  He started out that way, but I was able to talk him into sitting on the couch (for the most part) and allowing me to hand him his gifts.  And with this process he did start to actually see what he was receiving- and he looked at things.  He looked through books, he pointed to things he liked.  He looked at clothes.  There were still a few moments, but over all he did very very well.

He got two "die cast" world war I airplanes.  He did at one point tell someone not to touch or tickle him when he was holding his die casts.  Because doesn't every 9 year old say that?  He was probably having flashbacks to the die cast sopwith camel he received when he was 3- I had to glue it back together no less than 3 times that day- it was NOT a good day.  But in the end, he let his granddad hold one of his planes, they even played "war" for a couple of minutes.

Last night was a CRUCIAL reminder for his dad and me.  When he feels supported and secure, he is the same Jack we have always known and loved- funny, and personable, empathetic and yes, hyper.  He is in there- we just have some things to work through. 

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.

Saturday, 19 March 2016

Great Expectations

When you have your first baby you plan and plan and plan- or so you think. You will do everything "right" and your child's life will be ideal.  Cue reality.

Our reality has been a huge wake up call.  In the beginning it was really hard for me to adjust my expectations.  Jack started out so "advanced" with so many things that when I started to realize he was behind in other areas it was really difficult to stomach.  Add into that my rule follower, high achiever roots- yeah it was a challenge for this mama.

Things that have happened over the past month or so- things that have made my heart SO HAPPY, have made me realize just how far I have come.  

Jack started out on a rough path at his new school.  Weeks of behavioral spikes, refusing to do work, not getting along with peers.  It was terrifying- the constant calls from school- it got to the point where every time they called I thought they were going to ask me to come pick him up (they never did).  Even the bus driver was having issues with him.

What a turn around we have seen.  I guess my appreciation for this can go back to my last post about Nate- it took going through this darker period for me to appreciate the positives that are coming our way now.  

He is bringing home countless COMPLETE and CORRECT assignments.  Up on the fridge those bad boys go- he has never had this experience of consistent success in school before.  If it makes me feel this good I can only imagine what it is doing for his confidence level.  

Doing homework with him has become a completely different experience.  He may complain about it intermittently but compared to the past- when I would be constantly asking him just to look at the paper, it is a cake walk.  And he writes it!! Can't even begin to explain what that is like- he used to limply hold his pencil in his hand and tell me he was not capable of doing it.  

Then this week he had his third grade musical, "science rocks".  I thought they would stand up there and sing a couple of songs- 45 minutes into it I realized this was much more involved than that.  This type of event has always been a land mine for my firstborn.  The noise, the crowds, the expectation to stand still and follow directions.  The APPLAUSE.  Just the clapping alone used to send him into a tailspin and inevitable meltdown.  His dad and I were basically gripping our chairs at the beginning and praying (that he would do ok and that it would end- soon).  My son.  My sweet boy.  Made it the entire way through, and made an effort to sing every single song with a smile on his face.  Did he get the (very involved I might add) hand motions correct?  Not on your life!  Did he have periods where he couldn't stop giggling and the proper little girl standing next to him (she reminded me of myself when I was their age) was constantly jabbing him and telling him to simmer down?  100%.  For the first time in my life as a mom- I didn't worry- I actually wanted to tell the little girl to chill out- kind of symbolic I'm thinking 😜.  He even made it through the science fair awards and the once again constant applause.

I imagine most of the parents who attended this adorable show went and thought it was cute and enjoyed it.  I ended the successful evening in tears because I couldn't believe what my baby had achieved.  

Sunday, 13 March 2016

When Your Child Is Special

While I am a special needs mom, that's not what I mean today.

I am talking about how special my Nate is- what an amazing little individual I have in my life.  I was sitting with him today out at lunch after a particularly successful haircut and I just had to stop myself for a minute and stare.  He is so gorgeous.  Sometimes it feels like every single thing he does has just a little magic involved 

He is just a perfect little soul.

There is an element of this feeling of awe that DOES involve autism.  I am not one of those parents who counts autism as a blessing.  But it did give me a gift.  It gave me the gift of seeing my son "return" to me.  With the absolute devastation that came when he stopped talking to us, stopped looking at us, started banging his head against the walls, came the complete joy of seeing him respond to his name, attempt to say words, jump on his exercise ball rather than engaging in self harm..

Sometimes it really does take losing something to understand just how precious it is.  Jack was an "early talker".  I can still remember a mom in our play group looking at me completely deadpan and saying, "did your 15 month old just say vacuum???  excuse me while I go shoot myself in the head!"  (she's probably cracking up right now).  I was a first time mom, I completely took Jack's speech for granted- I had no idea just how amazing it was.  Honestly, I would've been happy if he would've simmered down for a minute- pretty much all the time.

And Nate started out slower, but developmentally appropriate.  He was still on track when he received his vaccines in June at about 16 months.  I am not trying to blame vaccines, but it was at that visit that he received a standard developmental screening- he was pointing, he had enough words, he was playing with toys.  And then he wasn't.  I guess you can take that however you want.

When your child, who is supposed to be exploding with new developments, loses the skills he has and checks out- there just isn't even a word that encompasses those feelings.  Terror- maybe.  But grief is in that mix, so I guess not.  Let's just say it's life altering.

Anyway, I don't want to relive all of that, but it's kind of crucial to the story.  In regaining skills, starting to explore his world, interacting with those around him, Nate has become my own little personal daily miracle.  Every single thing he does amazes me- and I can read him like very few moms can read their kids.  Because we had to do it without words for YEARS.  It was actually a huge challenge when he started ABA, me withholding things and waiting for the word, because I could literally always see in his eyes what he wanted and needed.  We had developed our own system, and I would have to say I was the only one who could read him like this.

I am starting to be able to share that with others, because he can now go into school and communicate his needs- generally only the very basic ones, but it's such a step up...apparently last week at school, he went to the bathroom while in gym and walked down the hall announcing to everyone "I pee, I pee."  Seeing this little personality that I have always known was there emerge and be noticeable to those around him is just thrilling.  

He has spunk, he has a little attitude, and I'm convinced that his sense of humor is just as sarcastic as his mama's.  The amount of eye rolling that goes on in this house is just hilarious.  His curiousity is starting to really emerge- he will literally move my mouth just to see me talk and watch how I form my words- this is so cool to see...

He is starting to "joke".  He finds himself (and his ability to make others do things) hilarious.  He is beyond loved everywhere he goes- he has his therapists, teachers, and family wrapped around his little finger.

In short, this little boy is my hero.  I am so proud of how far he has come, and I am so hopeful about where he is headed.  I could not have said any of that two years ago.  I was too absorbed in my own grief to realize how many wonderful moments were headed my way.  I am learning, through this child to appreciate the little moments in a way I never understood before.  I have learned that every single step for him is huge, and that he can go way further than I had realized...

I LOVE this boy!!!!  He brightens every single day of my life.  

Monday, 7 March 2016

A Cause Near and Dear to My Heart- Please Read!!

If you are reading this, you either know and care about our family, or are affected by autism in your own daily life.  Either way, you have some personal knowledge about the affects that autism can have on a family.  I talk quite often about the day to day emotional struggles that we face- but the fact of the matter is that financial issues have just as much of an impact.  This is true for pretty much all autism families.  There are few other serious diagnoses out there that have treatments and therapies so significantly limited by a family's personal finances.  If our children had other medical diagnoses, or genetic disorders, they would qualify for services, and likely medicaid rather quickly.  With autism, Maryland has the "autism waiver", which offers a limited number of slots for special services provided to kids with autism- we have been on the wait list for approximately 6 years now.  When we first started on this journey, we felt so limited in what we could provide for these kiddos- our insurance covered 50 therapy visits A YEAR.  OT, PT and speech COMBINED.    We could take them to (in-network) developmental specialists and get them diagnosed 500 times a year (if we were nuts), but the treatments these specialists recommended were completely out of reach for us, and we are a two income family, albeit one with two children in need of services.  

I could spend this entry perseverating about the things we have not been able to do because of lack of funding- there is much that I could say, and have said on this issue.  But that's not where I am going with this.  

There are sources of help, sources of funding out there for our children.  About two years ago, such a source came into our lives and changed things for the better.  We became aware of Avergan Foundation  through the special needs preschool that Nathan was attending.  We were drowning in debt trying to pay for this program that our son needed.  There was of course little to no funding available for this type of program, and the cost of it would quite frankly make your head spin.  When it comes to your children?  Your son who is 3 and non verbal?  That hardly matters.  You want your child to function, to thrive, and will do just about anything to make that happen.

To put this in perspective, here is Nate, at age 5- for weeks this program worked with him on a "wish" his mama had for his 5th birthday.  I wanted him to blow out a candle.  This may sound frivolous to some, but these milestones that we as parents miss out on- they mean so much. 
And here is a mama's wish coming true....

It is true what they say, fighting so hard for these small accomplishments makes them mean even more.  Avergan helped fund Nathan's attendance at this program for nearly a year, while also funding his private speech sessions with a speech therapist who truly understands his needs...

After all they did to help support our family, I found myself volunteering at all of their events, wanting to be involved, wanting to give back.  So recently, in a moment of insanity, I joined the board.  As tied up as I am trying to provide the boys with what they need- at this point, I am proud to say that I think they kind of have it...we are in a good place service-wise.  There are many other families who are not.  And they need help.  They are where I was 5 years ago- and it's not a place anyone should have to stay in!

So here I am, a mama with (another) cause.

Avergan Foundation is having an event called "Art For Autism" on April 23rd to raise money for these families, and we need your help.  If you are an autism mom (or dad), we need your kiddo's art!  If you are a business owner, we need your sponsorship!  And if you are my friend, or family, or care for these children we are working for, we need you to come out to the event.  I will be posting more information as the date gets closer, but here is the link to the event

Please consider getting involved in whatever way you can- if I can find time, you can too!!!

And just look at these faces.....

Not trying to sway you, but you know, they are kinda cute ;-)

Monday, 15 February 2016

Caregiver Burnout is Very Real

About a year ago, my employer, being the forward thinking organization that it is, hosted a teleconference for employees on compassion fatigue and caregiver burnout.  I of course could check almost every symptom box on the list of possibilities.  That being said, I have a very difficult time accepting that I feel this way, and that it’s not necessarily a personality defect.  I have always been a “carer”, and the thought that I essentially have nothing left in the tank and need to tell people I’m full up?  Well, it feels like failure to me. 

I became a nurse (gulp) 16 years ago.  It was the most natural thing on earth for me.  I studied biochemistry in college and accepted a research internship with a pharmaceutical company.   I did this full time for a semester and by the end was ready to emit a primal scream.  The lab- silent.  The petri dishes- did not answer me!  This particular lab was particularly stifled, not even music was allowed because apparently the researchers could not agree on a genre.  That was all it took for me to know that this was not to be my path in life.  I needed people; I needed to help people directly, not by isolating something under a cell culture hood!  When I returned to school I changed my major, transferred to Hopkins and the rest is history.  I chose oncology, bone marrow transplant as my area of practice.  I loved that they utilized primary nursing and that we functioned in and rotated between the outpatient and inpatient setting and also could transition patients and keep them when they required ICU care.  This resulted in nurses knowing their patients for months, seeing them daily, and unfortunately sometimes seeing them come back again and again for years when they relapsed or had complications.  It was definitely emotionally draining.  It was also incredibly fulfilling.  About seven years in, I needed a change.  I had had a string of wonderful patients pass away and to be honest, I was burnt out.  Also, I think God had a plan for me- I accepted a position as a transplant case manager with an insurance company- and made the eventual possibility of working from home a condition of my employment.

About 6 weeks after I started my new job?  Pregnant.  And then along came Jack.  I truly believe that this job is one of the key reasons that I have been able to do all that I do for the boys.  God put me here so that I would be able to be the mommy I need to be.  I was here through the boys’ infancy; I could nurse them on demand with the help of an in home daycare provider.  It was hectic- there were lots of interruptions, but it was worth it.  Little did I know what was coming with the boys- that this was by far the easy part.

With each of the boys’ diagnoses things became more complicated.  As their mom, it was my job to do everything and anything I could to help them- I have been through more assessments (and depressing discussions) than I care to mention, I have taken each of the boys through multiple clinical trials that eventually required me to take FMLA to preserve my employment, I have taken every Friday off for months to take my son to mother-son speech program.  We now have in home therapy every day of the week Monday-Friday from 4-6pm.  While I am still working.  As I have said, I am extremely thankful that I have the job that I have, because otherwise, the boys could not have this.  And I try to focus on that. 

 Parenting two kids with autism is incredibly fulfilling- and unimaginably exhausting.  I think that one of the hardest parts, a part that many on the outside looking in may not even realize, is that there is no true treatment roadmap for our kids.  And there is no one central to turn to, to tell you what you need to do for your child.  Instead there are about 20 cooks in the kitchen, all with different suggestions, different ideas, and you, as the parent, are left to sort it all out.  Are you going to treat your child medically, assume that there is some type of underlying physical issue contributing?  Are you going to focus on behavior?  Are you going to focus on sensory issues?  IEP’s?  Couseling?  Equine therapy?  Music therapy?  Vision therapy?  Well, the jist is that no one can tell you what is going to actually help.  All modalities have “evidence” that their methods work.  How do you choose?  Can you do it all?  Well I’m here to tell you that I have tried.  I have tried to continue working full time and providing all of these things for the boys.  Is it possible?  Well, what are you willing to sacrifice?   Your Sanity?  Well-being?  Your family life?  Your marriage?  These choices are no fun, they are actually quite terrifying.  And there is no way to know if you are making the right ones

My job no longer involves face to face, physical caring of patients.  That does not mean that I am not still caring for patients.  I spend hours on the phone with my patients now, and am a bit of a jack of all trades.  I review their clinical information and determine if they are eligible for a transplant, yes.  That is one of my main jobs.  But after this initial step, I call these patients, establish professional relationships with them and help them with everything from finding transportation to appointments, getting their medications, explaining the transplant process, helping them find a transplant center that will accept them, monitoring their rehab attendance if there are substance abuse issues, to figuratively holding their hands when they are feeling low, helping them find a caregiver when family members fail to support them, and listening to them express their doubts about moving forward with transplant, their thoughts about dying.  All while being recorded, ha.   And being called by my son’s school daily as he adjusts to his new placement, being asked to get on the phone and “motivate him” to work. 

I am lucky to have a partner in this- my husband.  The reality of the situation is that he now works an hour from home, so I am on my own with all of the daytime issues.  The fact that I also have a full time job is irrelevant, as he is too far away to assist.  And I have NEVER discussed this before- but my husband is also chronically ill.  I won’t go into details, but I will say that his illness leaves him incapable of helping a fair amount of the time.  He is busy trying to keep his own health in check, as he should be.  

I find myself yelling at my husband for being sick.  I find myself not responding to my friend’s calls and messages, actively avoiding them even.  I find myself looking forward to work, because it is my break.   I find myself running until I am completely numb, both mentally and physically.  I find myself locking my bedroom door for 20 minutes so that Jack can’t come in and talk about planes- not that it helps, as he is content to continue his monologue through the door.  I find myself breaking down every time Jack has a meltdown and becomes physically aggressive- and I need to focus on him, I need to remain calm, I need to follow the plan the behavioral therapist has in place.  But with all of the above that is going on, all I can think is, now he is hurting me.  How can this be?  What have I done wrong?  What is wrong with ME?  This one change to the status quo has all but cracked me- it is the proverbial straw that broke the camel’s back.  I can handle a lot.  I DO handle a lot.  But lately, it feels like it’s just too much.  I end the day so exhausted, so overwrought, and so empty.  I often wonder how I will make it through- each day feels like it's own individual battle.   I wake up in the morning and brace myself for all of the unknowns that are about to be lobbed my way. 


So what happens in the face of other stressors when one is already feeling like this?  I am told my work hours are going to be changed, that it is mandatory- ok, whatever.  We have a financial problem- mkay.  House crumbling around us?  No biggie.  Get yelled at at work?  Oh well.  I have no ability left to mount a response to these things that seem so mundane these days.  And maybe under the circumstances that’s a good thing- it’s definitely a protective thing.   I am numb to so many things- my patients at work don’t really affect me the way they used to- I care, but I don’t.  I do my job, it is my JOB.  But the passion?  It’s gone.  The compassion?  Well, I can fake that.  I am hanging on by a thread, trying to remind myself that if I made it through Nathan constantly banging his head on the floor and standing on his head, I can make it through this.  But fatigue?  Burnout?  Doesn’t even begin to describe it.