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. 

http://www.webmd.com/women/caregiver-recognizing-burnout

 

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. 

 

The Fabric of An Autism Family- Quite the Intricate Weave

The other day, I was talking to John about taking the kids somewhere.  Let me rephrase that.  I brought the idea of taking the kids somewhere to John’s attention and didn't need to wait for an answer.  Just a minor shift of facial expression is all it takes anymore.  I can read what my husband is thinking and feeling via maybe 2 words of a text, by looking at his face, by the tone with which he says hello, by how long it takes him to come into the house when he gets home at night, by how many times he hits the snooze button in the morning, and most importantly by the way he looks at me. 

This does not happen overnight in any relationship.  It is a dance and ours is still in the choreography phase as we speak.  I guess that could be said for everyone right?  BUT, we have a dance, we are good at it, and we are fine tuning our steps daily. 

I want to talk about how this “dance” is affected by having children with autism.  When our boys were first diagnosed (within 6 months of each other), all we could ever see in each other’s eyes was distress, fear, anger, sadness.  It felt like our relationship was freeze framed in this way.  How can you read your partner when they are continuously grieving?  The pain was all I could see in his eyes and I am sure the same was reflected in mine.  During this time, there was really no way to move forward in our marriage.  We had to deal with an issue so huge, so life changing that we were literally paralyzed emotionally.  We were both so vulnerable and yet closed off from each other.  I say this not to evoke sympathy, or even to explain OUR lives, but to inform those who may have relatives going through something like this now.  You cannot get an accurate picture of a relationship as a whole when two people are devastated, when they have been through something that can most accurately be described as trauma.  

But this is not the point either.

The point is our communication now.  How our dance has changed over the past several years.  If other couples learn to communicate in the ways I mentioned above, couples with special needs children are all but telepathic in their communication.  In an instant, if we look at each other and see a certain glint in each other’s eyes, we will grab our kids and haul ass out of a store, restaurant, museum etc.  We have a whole new set of communication techniques now.  Before, if one of our children was melting down, we were both frozen, because it was traumatic for us.  I mean, who reacts appropriately the first time their kid starts banging their head on the floor in a restaurant?  If you think you would, listen closely, did you hear it?  Golf clap.  Because it’s bullshit.  It’s a learning curve, one in addition to the one that comes with parenting.  And for us, you can throw into the mix that we have two boys on the spectrum and completely different things set each of our children off.  It makes it all but impossible for all of us to go anywhere.

John, poor guy, resists family outings with everything he has.  So last weekend, I convinced him on a 60 degree day to go to Chick Fil A then the park to play.  Seriously we were sitting in Chick Fil A for less than 10 minutes when Nathan started gagging- with what may have been a relapse of his stomach flu or a reaction to one of his medications (sorry Jo :-) ). I didn't want to look John in the eye, I knew I wouldn't like what I was going to see.   And it wouldn't  have even been “time to go”.  It would have been “aha, now you remember why I don’t like to go out with both kids at once, and why we always go through the drive thru.  Now you remember that it NEVER ends well.  Now you remember why I offer to stay home with a kid pretty much every weekend while you take the other one out alone.”  One look.  Dude, I kept my eyes to the ground, lol.  

Without looking we both knew it was time to run anyway.  But no one got upset.  Just another day.  I am trying to figure out how to phrase my point.  I guess I am trying to say that there are many learning curves in life.  There is a continuous one in a marriage or committed relationship.  And another continuous one that comes with being a parent.  And then there is (what feels like) the Mount Everest of being a parent to two children with  autism.  It doesn’t matter how in shape you may think you are at the beginning of the climb, you’re gonna suck at it, I can guarantee it.  At least in the beginning.  All of the rules others have taught you, or that you have learned along the way go out the window.  For me and John, there is often no time to talk, to communicate about our kids’ behavior or needs.  We need to be able to grab them and run- together.  We need to be able to say no to negative situations, together; often without having time to consult with each other.  We need to be able to poke each other in the middle of the night for the rest of our lives and have faith that we will help each other, even if it means cleaning poop off the walls- again.  When I call John at work to tell him that when I told Nate to “touch bird” in a book he touched both of them instead of just one, John needs to know that he should freak out and be excited- for the rest of his life.  Even if it’s the only progress I ever report ever again.  Because we are an autism family, and every single step matters, even if it’s more like climbing a stairmaster (getting nowhere) most days. 

We are learning this new dance, over time.  All autism families are.  But I’m not going to lie to you, it quite often sucks.  We are in a completely different ballroom from typical families.  The music is quieter so as not to hurt our children's ears, the lights are dimmed so that they aren't too stimulating.  And we really have to watch the tempo or we may totally mess with one of our kids' vestibular systems.  Did we understand all of these little innuendo's several years ago?  Of course not!  We thought the disco would be just fine, that the strobe lights wouldn't cause issues, that the crowds would be fun.  Now we know better.  Our familial relationships have to adjust to suit these needs yes, but more importantly, we have had to learn a whole new marital dance.  The good news is that even if your partner is stomping all over your feet and dropping you at the beginning of the journey, if you just hold on, you WILL get the hang of it.

A Tribute to a Marriage

In honor of my parents' 42nd anniversary this week I decided to repost this. Love you guys!!!

“Happily ever after is not a fairy tale. It’s a choice.”

-Fawn Weaver

Not many people these days have the privilege of having an intact family of origin.  I am one of the lucky ones.  My parents posted all over Facebook today (what the heck?) that this is the 45^th anniversary of their first date.  They have been married for nearly 42 years.  Crazy.  And something to be respected.

What have I learned from watching my parents?  I could lie and say it was something like “true love conquers all” or “ain’t no mountain high enough”, or even “it takes two”.  And that’s all true.  But that’s not the take away message for me.  In a society where most people take the easy way out (my opinion), my parents have toughed it out.  I don’t believe that most marriages that end in divorce are that much worse than the ones that survive.  It’s an issue of determination, willingness to “stick”, to fight for one’s family.  Of course there are always extreme cases when the only safe thing to do is call it quits, but that is not how the majority of divorces come about.

They have not had the easiest of roads.  When I was little, we moved almost every 2 years until I was 11 years old- and no, it was not a military thing, although they went through that too.  My dad’s company transferred their employees frequently.  Then when we finally settled in New Jersey, and my parents had my little sister, who is 12 years younger than me, they were transferred to California.  That was really rough.  There has been much sacrifice on both sides, and there continues to be.  This is not a fairy tale- this is real life- a reflection of two people trying their hardest.

I think it is so important for parents to teach their children a realistic view of what life is.  I have had friends who say my parents never fought, they were always happy, yada yada.  Unfortunately, that’s crap.  No one is happy all the time.  Hiding reality behind closed doors is not helping anyone.  I remember two years ago, I was upset and crying (believe me, I had reason) and a family member (not immediate) exclaimed that I should not be crying in front of my children.  It took all I had to keep my jaw from dropping.  What an unrealistic thing to say!  And frankly, if children don’t learn from their parents that it’s ok to be sad, and ok to cry, who are they going to learn it from?  I think that presenting the world as a continuously rosy happy place to one’s child is not only artificial, but it is setting them up to feel like a failure later on in life.  I saw both of my parents cry when something was really sad or upsetting- I think it molded my sense of empathy for others, and I think it helped to make me the nurse, wife, and mother I am today 

Circumstances in marriage will come and go- people and situations will try to break up one’s marriage over and over again.  It happens to everyone, don’t kid yourself.  Life gets in the way; stress causes tension, bad things happen.  To all of us.  What makes my parents stand out from the rest is that they have been able to maintain the perspective that so many of us lack.  They are able to recognize the bad times for what they are, a storm they have to weather, not the end. 

It seems that our society applies the same rules to marriage as it does to fast food- we want it how we want it, we want it at little cost, and we want it NOW.  And it just doesn’t work that way.  I do not know if my marriage would have survived if did not have my parents’ example right in front of me. 

The longevity of their marriage allowed me to reflect upon the strains in my own marriage in a different way.  I was able to remember dark times in my family of origin- and the work that had to be done to get past these times.  WORK.  Good relationships and marriages are not things that are handed to us; they are things to be worked for.  How easy it would have been for me and John to cry uncle two years ago.  I mean, the statistics basically told us to!!  It’s what everyone expected at that point, and it’s what some wanted sadly, because that is what they were used to.  I think that the fact that we stuck it out, and came out MUCH better on the other side shocks many.  When I think about it, it doesn’t shock me.  Because I watched my parents do the same.  What an amazing gift they gave to their children. 

A successful marriage is an edifice that must be rebuilt every day.
Andre Maurois

Read more at http://www.brainyquote.com/quotes/topics/topic_marriage3.html#gv7dXbyMLjGlqVKL.99

A successful marriage is an edifice that must be rebuilt every day.
Andre Maurois

Read more at http://www.brainyquote.com/quotes/topics/topic_marriage3.html#gv7dXbyMLjGlqVKL.99

A successful marriage is an edifice that must be rebuilt every day.
Andre Maurois

Read more at http://www.brainyquote.com/quotes/topics/topic_marriage3.html#gv7dXbyMLjGlqVKL.99

A successful marriage is an edifice that must be rebuilt every day.
Andre Maurois

Read more at http://www.brainyquote.com/quotes/topics/topic_marriage3.html#gv7dXbyMLjGlqVKL.99

“In a time when nothing is more certain than change, the commitment of two people to one another has become difficult and rare. Yet, by its scarcity, the beauty and value of this exchange have only been enhanced.”
― Robert Sexton

Love you both 

A Year Wiser....

This weekend is a very very special anniversary for John and me. In some ways, even more important than our wedding anniversary.  This weekend it's been a year since we began our Retrouvaille journey.  See this post for a refresher:
http://www.blogger.com/blogger.g?blogID=5362113364349699326#editor/target=post;postID=7193241725232425701

What a year it has been!  I am so proud of us!  I am so proud of our family.  And I know that we are both in it for the long haul. 

We are going away today for the first time since we had children, just the two of us.  Unless you count our Retrouvaille weekend, and we do not.  Thank you mom and dad for watching the boys.  It's only one night, and we are going to the TACA conference, but hey, away is away.  Meals without kids are meals without kids.  A full night's sleep is- well, it's heaven.  And the craziest thing is that this conference is taking place in the exact same town in Pennsylvania where our Retrouvaille weekend was held.  Malvern!!!  Not even that big of a town! 

We have learned so much about the true meaning of love, and real commitment.  We know each other in a way that we never did before this experience- and maybe that's what it's all about.  You can let a crisis in a marriage and family be the end or you can take it, recenter yourselves, learn from the situation, and bam, you may just find yourselves at a whole new level in your relationship.  Totally. worth. it.

I stand by this, now more than ever

My Little Natey

Well, I guess that as of this Sunday I don't have a baby anymore :(.  For me, three has always been that cut-off.  Granted it feels like Nate has been a baby much longer than Jack was, I am sure that much of that is due to the language delays.  Just wanted to write a bit about his birth now, as I will be too busy this weekend with his little party.  Already I have nearly asphyxiated myself from blowing up so many balloons- you will see why later on in the pictures. 

Really all I would need to do to explain everything about Nathan is say, take Jack's story and flip it on it's head.  That's Nathan- from pregnancy, to birth, to infancy, that's Nathan. 

Whereas Jack was a "surprise", Nathan was the product of a 9 month waiting game while trying to conceive.  I was sick as a dog with Nate, I think partly because I was so busy chasing around a two year old.  Other than that, the pregnancy went pretty smoothly.  If you hate birth stories, you need to skip the next couple of paragraphs.  Well really, the rest of this post.

I was very dissatisfied with how Jack's birth went- enough so that I changed doctors before I became pregnant with Nathan. This practice was great, very supportive.  I really wanted to try for a drug free delivery, even after the pain of the first time around.  I am a pretty anxious girl to begin with, so this was a tall order.  I know all women hear that childbirth pain is partially caused by, or made worse by, fear.  We all scoff at this, and claim that this theory was brought forth by a man.  I decided to work with it though, knowing myself as well as I do, and enrolled in a hypnobirthing class.  Oh John....poor poor John.  There we were with all of these granola-ish parents lying on the floor, doing visualization.....that's love right there.  When Nate turned breech it was the most lively discussion of the whole class- every suggestion you could think of was flying at me from every direction.  Conveniently, we had an acupuncturist in our class and she brought me a remedy that I was supposed to burn by my foot (yep), but by the time she got it to me Nathan had turned.  I think he was scared, haha.  The class was very relaxing.   Even John admitted to having no idea how much time had passed during these meditations.  I was skeptical though- how was I to concentrate on this cd and my breathing through so much pain?  I BEGGED for drugs the first time around. 

I was convinced, had not one doubt, that Nathan was coming early.  He was due on New Year's Day.  Drove my family crazy with this- even remember having an argument with my mom because I wanted my parents to come for Christmas.  She was still working and said she could either do that or come when the baby was born.  I said she didn't need to choose.  I was that sure.  Don't think my mom doubts me anymore. 

I was so sure that by December 8th I had all of the christmas shopping done, all of the presents wrapped.  I baked 4 batches of cookies that day as well- the nurses benefitted from that one.  So anyhow, there I am, and I am NOT making this up, wrapping the last Christmas gift, with the last batch of cookies in the oven, I stand up, and pop.  My water broke!  That never happened with Jack, at least not until right before he was born.  I kinda freaked out to be honest.  John was upstairs lying down with Jack while he was falling asleep, so I decided to call the doctor first, figured we had several hours to come in since I wasn't really having contractions yet.  But no, she wanted us there within an hour- I technically wasn't full term yet- I think I was 2 or 3 days shy of it.  So I arranged for someone to come watch Jack and then went upstairs to grab John.  He was completely asleep!  It takes awhile to wake him up- and I wasn't able to do it without waking Jack too, since he the lightest sleeper in the world.  I remember looking at Jack and having this overwhelmingly bittersweet feeling.  This boy had no idea how much his little world was about to be rocked, and this was the last time I would see him and be just his mommy. 

We headed to the hospita and were taken to triage.  The nurse swore up and down she wasn't seeing any amniotic fluid.  I wanted to sit up and scream "oh no bleep!  I don't come to the hospital unless it's time to come to the hospital.  I am a nurse and I am telling you- MY. WATER. BROKE."  Luckily, I held it together, and when the OB examined me she said that Nate's head had just come down really fast so I wasn't leaking fluid anymore, but my water was broken.  So there, ha.  We were admitted, I was I think 3cm, not much doing, just minor contractions.  That changed VERY quickly.  I popped my cd in and my headphones on and tried to relax.  To my surprise, I really did drift off, really was able to concentrate on my breathing, was in "the zone".  Kinda freaked John out.  In between listening we would walk, and walk, and walk.  I would keep the breathing going throughout, and it really worked for me.  The best thing I can think of to compare it to is the feeling you get when you are in good shape and in the middle of a long run- spacey and focused at the same time.  And unable to feel your legs :).  They checked me after a few hours and I was 9 centimeters!  I got all cocky- almost there, this is nothing.  HA.  I was 9 cm for 5 hours.  Let me tell you, hypnobirthing can only get you so far!  After 5 hours of that, when I hit transition I thought I would literally kill my husband.  I mean, it was like a scene out of a movie.  I asked for ice chips, John brought the ice chips, and I asked him why the hell he kept putting ice chips in my face and he said because you asked for them.  I screamed at him to get away.  Good times.  The baby's head was not coming down far enough- turns out this is the one way in which Nate was like big brother- he turned sideways in the birth canal.  I will never forget, about an hour before I delivered, the OB who had been with us all night went off duty.  She had been staring at me for much of the night saying things like "you can't be 9cm" because I was so calm.  When she left, she looked at me and said "Jenny, you don't need any pitocin, you don't need an epidural, and you are going to do this with no help."  All of the things that had been "done to me" with Jack she was telling me that I didn't need.  It was inspiring.  I'll cut to the chase and say that she was right- I needed none of that.  I did it myself.

At first I thought there was something wrong- there were so many staff in our room!  Turns out that the nurses, social workers, and birth coaches all need to see at least one drug free delivery a year to stay current.  And it was December.  Well hello there....everyone.  And to top it off, this was also the day that the computerized order and medication system went live- so everyone was trying to figure that out too.  Entertainment. 

I'm not gonna lie- my OB cried at my delivery.  This was not for a good reason.  I had to be seen in her office every 4 weeks for 4 months.  It was rough- but worth it.  In the end anyway.  The nice things about that delivery- I got up right away, I could take care of my baby right away.  I had pain, but I felt in control of my own body.  I never even needed an IV.  And Nate was amazing (still is of course).  He fed right away, he was alert, he was quiet.  Just a joy.

John had to go home that night to be with Jack as we didn't have anyone who could stay with him.  So my friend Joann came and spent the evening with Nate and me.  It was one of the most peaceful nights of my life.  He ate right away every time, when he fell asleep I put him in the little bassinet and he just stayed there.  It was amazing! 

I will never forget the births of either of my boys, but I have to be honest.  Nate's was really special, almost spiritual in some ways.  One of the best, most empowering experiences of my life, and look what we got!!! 

Naked

When I take a chance in my life, when I allow myself to be vulnerable, I feel naked.  Frankly some of my posts on this blog have been so personal that I would have felt less exposed if I were naked.  And that's saying something.  There have been many times when I have been terrified to hit the "publish" button, afraid of mean comments, too much bad advice, you know, negativity.  It's never happened.  Never.  I have been in relationships in my life where I have felt constantly judged, never good enough, not pretty enough, not thin enough, not smart enough, not shallow enough to be accepted.  I never feel any of those things here.  I actually don't feel any of those things in the autism community in general.  Walking this road has taught me a lot about not judging others, their parenting, etc.  But it has also taught me quite a bit about feeling accepted myself.  It has brought me to a point where I will accept nothing less.  That's what I deserve, and that's what everyone deserves, including our children.  I feel surrounded by loving and supportive people- enough so that if someone isn't able to see me as a person of value, someone worth knowing, then I don't want to know them.  My previous tendency was to try even harder with people who didn't seem to "get" me.  Insecurity central.  And it backfired every time.  I don't have ongoing relationships with any of those people today.  If someone chooses to push my friendship away, hey, they must not want it!  How about that- simple concept, difficult execution. 

Anyway, there is a point to this.  I am incredibly grateful for all of the support, GOOD advice, and general discussions that this blog has generated.  I have enough readers at this point that someone responds to every post- and quite often makes a really good point, or offers support that I didn't know was available. 

My class with Nathan is turning out to be a similar experience.  I am really coming to look forward to Fridays for a whole new reason- I love learning new methods for communicating with Nathan, I always leave feeling incredibly uplifted and motivated.  And the other parents- that's the best part for me.  We are all very different- different ages, backgrounds, etc- but we have such a strong common bond.  As the weeks pass we are all opening up about our children, our families, our experiences with the autism community, different doctors, therapists, etc.  It's a whole new type of education.  There is one mom, whose son is in Nate's ABA class, who I chat with quite a bit.  The group was having a discussion about evaluations, genetic testing and other diagnostic tools and she revealed that her pediatrician told her that she needs to have her 6 month old son evaluated; that he is showing developmental delays already.  This doctor has not even met her older son who goes to a specialist, and was not aware that he is on the spectrum.  She welled up just talking about it.  I seriously wanted to wrap my arms around this woman who I barely know.  If finding out that one of your children has challenges is painful, finding out that another child is affected is excruciating.  All of the thoughts that run through a parent's head- how can I possibly get another child to all of these appointments, how can I possibly afford all of these appointments, what does this mean for my family?  And my heart just broke for her.  She then said that she wants to wait a few months and see if he catches up- my first inclination then was to jump across the table, shake her and say do it now!!!!  The earlier the better right?  But every parent has to go through this period- before they even know for sure that something is amiss- of mourning, of accepting what may be coming.  And I get that.  So all I said was, it won't hurt a thing, or cost a thing to have the school system evaluate him.  And early intervention won't cause him harm.  If they are willing to offer it, we should grab onto that right?  I hope she calls.  I don't know what they would do for a baby that is 6 months old- all I could think of was that if she doesn't call now, and he ends up having issues, she will beat herself up later, or at least I would.  What a huge thing to discuss with virtual strangers- but in that setting, we're not strangers at all.  We are very likely the only people who understand the magnitude of what she is saying.  The only ones who won't say things like "I'm sure he's fine".  Because we all know that statements like that will not make her feel better- nothing will make her feel better except hearing someone with credentials say that her baby is developing typically.  So I am saying some prayers for her and her family tonight, and I hope that you will too.  Pray for her little bambino and the best possible outcome for him.  And thank God that his mom is already so well connected within this community, she knows what to do for him.  While I'm at it, thank God for other parents with similar experiences, and thank God for all of you, who make "baring" it all much less intimidating.  I can't tell you how much it is appreciated. 

Empowerment Through Acceptance

Accepting the limitations that autism brings is one of the hardest parts of dealing with the diagnosis.  That and wondering to what extent your child will be affected by them.  I remember that at about this time last year I was at a birthday party and a good friend of mine, who's daughter is slightly younger than Nate was there as well.  Her daughter was pointing to all of the animals on a board, naming them and making their sounds.  Honestly, I was so raw at that point that I wanted to curl up in a ball and die.  Nate was no longer saying mama.  This was probably one of the key moments that led to me isolating both myself and the boys from peers for awhile.  I couldn't handle having my kids around neurotypical kids.  Obviously my friends and their kids were doing absolutely nothing wrong- in fact they were incredibly supportive- it was the pure normalcy of it that I couldn't handle.  And it was such a different experience than the one I had the first time around.   Jack was a VERY early talker.  The other moms were amazed by him, I was proud, and at times I did have moments of smugness.  The joke was on me.  I have learned just how little my parenting had to do with Jack's speech development.  Not that reading to him didn't have a positive impact, but much of it was just how he was wired.  I never got why other parents were stressing so much about their child's lack of speech.  I figured, it'll come.  Oh man, that just makes me cringe now! 

I didn't think the pain of that would ever get any better.  I felt like I had lost too much, with both of the boys being affected by autism, to ever get to a place where I would be comfortable around our friends again.  Am I there now?  Not really.  But I have realized that I am on that path.  I am slowly able to "expose" (because that's how it feels) Nathan to more "normal" situations.  Was it him I was protecting in the past?  At the time I thought so.  Nope.  He most certainly didn't and doesn't notice other people's reactions to him.  It was for me.  Mommy couldn't handle it.  And you know what?  I think I had a right to that- I had to find my own way through this maze that is our life. But on Sunday, when I was at the farm with the boys and Nate was stimming, I could take a deep breath and accept that it was going to happen, that it was going to continue to happen, and it is ok.  Getting to this point opens up a whole new world to us.  Would I venture to take both boys to the mall by myself?  Ummm, no.  At least not by choice, or for "fun".  There are too many triggers, and they are different for each child- it's like a minefield.  But outdoor activities, small gatherings, playdates; I AM getting to a place where I can handle these as an autism parent.  I can hold my head high while watching my kids do his thing.  I can answer other parents' questions without becoming overtly defensive. 

I will NEVER fully accept my kids' limitations.  I will always be fighting to better their quality of life, to improve their functioning both at home and out in the world.  But I guess I now understand that there is a huge difference between acceptance and feeling defeated.  I can fight for them while appreciating who they are during the process.  Nathan is doing the most awesome thing this week.  Most parents would be absolutely thrilled by it themselves, when their baby is about one.  He has been saying mama again for awhile now, but this week it's like something clicked and he has realized it's my name, that I come when he says it, that it gives him some power.  I have never heard mama said this much...ever.  I love every single second of it.  If he is sitting in his booster eating lunch and he hears the click of my office door opening, he starts in right away, calling to me.  He sometimes comes to the office door when he gets home from school and just stands there saying it until I come out (it's not hard to convince me).  When I walk into his room in the morning to pick him up out of the crib he says my name.  This time last year, I was honestly afraid that I might never hear that word come out of his mouth again.  So now I can find my almost 3 year old saying "mama" completely fulfilling.  I look at the other kids in our social circle that are his age (there are I think 6 within 2 months of each other) and I can find their speech cute again.  I don't resent what I am missing with Nate- or not nearly as much.  My friend's little boy is about to turn 1- I am preparing myself mentally for his speech to surpass Nate's shortly.  It's not nearly as painful as I feared it would be.  As long as we are moving forward in some way, I am ok.  What a huge leap to make in a year!  In terms of empowerment- accepting where we are with Nate gives me the ability to fully reconnect with friends that have kids his age again, and as I mentioned above, it gives me the confidence to take him out with me more.  I can handle it emotionally when he has a sensory meltdown, or runs around with pine needles waving them in front of his face for an hour.  Our whole family has come a long way.  For instance, my mother in law took Jack to get a pumpkin at a farm a few weekends ago.  She brought a small pumpkin back for Nate, but she also brought an extra long weed that she found- perfect for Nate to wave till his little heart was content.  I almost cried, I was so touched.  She too is reaching that point.  My mom is constantly looking for opportunities to have therapeutic one-on-one time with him.  And daddy?  There just aren't words- he has become one of Nate's biggest cheerleaders.  All of the people who love Nate are getting there.  He must feel that right? 

Finding Peace After This Past Year

How?  Well, several ways...

First of all, I am sitting here blogging when my house is a complete disaster.  A year ago I could not have done this.  Everything needed to be tidy, everything needed to be in control.  Writing brings me so much peace that I would rather do this than deal with the chaos around me.  I could vacuum up the dog hair...again...and when I get up tomorrow morning it will look like I have done nothing.  I could put all the toys away, knowing that by 8am tomorrow they will be right back where they are now.  I am choosing not to.  I am choosing to take care of myself FIRST.

This is one of the biggest lessons I have learned- and I definitely learned it the hard way.  I mean, as I said a few weeks ago, when I went to the dentist they had to "reactivate" my account.  I hadn't been to my PCP unless I was ill in almost 5 years.  I am paying the price for this now- need extensive dental work.  I had a root canal today- how sick is it that it didn't really bother me?  Being able to lie still for 2 hours in the middle of the day?  Priceless.  I could have done without the fever last night and the pain right now, but other than that I'm good.  Thank God my physical health is good- well other than the migraines and lock jaw.  I am hoping that taking care of the dental issues might help the migraines.  Hoping.  I went so long just trying to make it day to day- getting the boys to their appointments, working, CLEANING.  I was waiting for there to "be time" to take care of myself.  I have come to the realization that this is never ever going to happen.  I have to make the time, no matter how difficult it is.  These things were always weighing on my mind- they sat on my "to do" list for a long time- taking the time to actually do them is way less stressful than worrying about it.

Another biggie for me?  I have really found a new perspective on day to day happenings.  I used to stress out so much about what people thought of me, how my children behaved, my relationships, my self-image.  Now that things have calmed down a bit (it's all relative, ha) I feel myself stepping back and viewing things differently.  It's all a process.  No one event is going to make or break my life or my family.  The children have meltdowns in public.  I argue with people.  I overreact at times.  Blah blah.  Tomorrow might be a good day.  Or it might not.  Walking through the day is my goal, as long as I can accomplish that, then I am doing ok.  The people who care about and love me today will still love me tomorrow.  And some of these things are out of my control.  I cannot always control my children's behavior, I cannot control how people feel about or react to me.  I used to spend hours fretting about the people who disliked me or had a problem with me.  Way too many tears were shed, way too much energy was spent.  My husband has really been instrumental in helping me deal with this. I cannot make someone like or understand me if they don't want to, and why would I even want to try?  Why waste my energy?  I have way more important things to attend to.

Probably most important- I am trying to use my energy wisely.  There have been so many days when I have felt like the "caretaker" of my children instead of their mom.  What's the difference?  I have felt like my life is an assembly line- morning routine, school, work, dinner, play, bedtime, clean, sleep, repeat, repeat, repeat.  If I stepped away from this routine I would be behind and the rest of my week would fall apart.  Well screw it.  I spent years doing this, trying to be perfect and guess what?  It just didn't pan out- I have cavities, my family room rug has juice stains on it (not to mention dog hair), I still have 5 pounds to lose.  A year from today, will I remember the toys being picked up or will I remember sitting in the back yard with my family?  Well honestly the way life is these days, the answer is honestly probably neither, but you get the point.  I will never ever look back on my life and say, I wish I cleaned more, or I wish I did more online shopping.  These moments with the boys are fleeting- and especially in our situation, they are both still in that "window" where early intervention can make all the difference. So that is where my efforts need to be focused.  And my house can just stay messy.  Because Nathan holding out his arms to me and saying "come" means much more to me than all of his books being organized on the shelf. 

Am I able to keep this perspective all the time?  Hell no!  My initial reaction when I am snubbed by someone is still to feel devastated.  It takes me a few minutes to step back and remind myself that I am worthy of being cared about, and that I am loved by the people who matter and want to be a part of my life.  But I get there now- and that matters.  Do I still run around like a maniac trying to get every square inch of my home clean at times?  For sure- ask my husband- he knows to stand back, lol.  Do I cancel appointments for myself because I have to choose mine or the boys?  Absolutely.  But for me, the fact that I am making the appointments at all is a huge step.  The idea that I am leaving the dishes in the sink and sitting down with the boys is huge- even though that stack does still call out to me.  But guess what?  The world doesn't stop turning just because I have dirty dishes.  How about that?

Twitter- Who knew?

Probably everyone but me.  Who knew that there were so many great autism resources available?  I had pretty much ignored twitter in general until a friend of mine mentioned it in reference to something completely different last week.  That little reminder made me go explore....and turns out that it seems to be the epicenter of the autism world.  I feel like I am getting a live news feed of the latest news and interventions, not to mention a wealth of stories and support from other autism parents.  In just these few days, I have been amazed. 

Look at this story, written by Jim over on http://blogginglily.blogspot.com/

http://www.childswork.com/blog/2012/10/married-with-children-special-children/

I feel like I am reading my life.  Something I would have loved to explain on my own....I just don't yet have the words.  I am not yet to the point that he is....where I think that marriage with special needs kids is no harder than marriage with typical kids, just different.  Right now it's still much harder to me.  But I see the evolution....a year ago it seemed impossible.  And now, I do see my husband and myself as down in the trenches together.  Having John at an assessment offers such a huge degree of comfort, and a year ago it would have stressed me out.  We do give each other breaks, we do have different strengths when it comes to the boys.  I am able to respect this much more already.  This article gives me something to aim for.  And I do believe we will get to this point....in many many ways, we are already there.  So thank you twitter, and thank you Jim for the inspiration!!!!

Hey Jealousy

I want to talk a little bit about stimming.  I can't believe I haven't brought this up before because it is such a major part of our existence.  Both of our kids exhibit stimming behaviors.

http://autism.wikia.com/wiki/Stimming

With Nate it is almost always auditory, oral or proprioceptive.  His very first stim was a repetitive noise, and because John and I were in tune with these type of behaviors it set off alarm bells pretty quickly after it began.  He also runs around humming most of the time, or repeating the same string of vocalizations, which sound remarkably like words but are not.  He also hurls himself at things a lot- he is seeking deep pressure in doing this- loves to hurl himself on the floor repetitively.  This probably should disturb me due to the risk of self injury, but it is such an improvement from his previous head banging (walls, me, furniture, crib) that for now, I'll take it.  His lap-running is also a stimming behavior.

Jack's stimming is errrr, quite a bit different.  Almost all of his behaviors are proprioceptive and vestibular.  He did a lot of flapping as a toddler, but with age that has for the most part gone away.  He also hums quite a bit.  His main stim these days involves a type of rocking that is very uncomfortable- mainly for mommy.
http://www.autism-pdd.net/testdump/test25536.htm

This is an uncomfortable and taboo topic for many parents.  Jack has been exhibiting this type of behavior since he was about 2 years old.  The difference is that his "venue" is not a pillow, furniture, the floor.....it's ME.  I know that he has no intention of making me uncomfortable, or at least didn't in the beginning, now I question that. As he has gotten older, and because I have always told him it's a private thing, and he shouldn't be doing this around other people, he now uses it as an "attention getter".  So whenever I am trying to work, or I am on the phone, or trying to have a conversation with, say my mother, or my husband, the behavior starts.  This has been a big problem for a long time and I am at a bit of a loss.  His "play therapist" literally shrugged her shoulders at me (yeah, thanks), and his OT suggested I "brush" him more.

http://www.ot-innovations.com/content/view/55/46/

It's not that I am unwilling to do this, but I did it every 4 hours for about 4 months....kinda burnt out.  But, alas, I guess I will have to give it another go.  I don't want Jack to feel like I don't want him near me, but it seems that lately, every time he approaches me, this is the intent, and of course I tell him to stop.  I tell him he can hug or kiss mommy a million times, but that he cannot do this.  He laughs.  ugh

Another big provoker of this is daddy time.  Not Jack and daddy time, but mommy and daddy time.  Can you say jealous????  To be fair, when John and I were going through our difficult patch, the boys physically pretty much had me to themselves.  It has to be a bit odd to see such a change between your parents.  But as with most things, Jack takes his jealousy to a slightly higher level.  If we hold hands in the car, he has said "daddy get your paws off her".  If we hug--- in comes the stimming behavior.  If he rubs my back, Jack jumps onto the couch, removes his hand physically from my back and takes over- for 3 seconds.  Dude, you do not interrupt a woman's back rub!  He clarifies with us over and over again that we are married, that daddy loves mommy, which is really very sweet.  I have no doubt that he felt the previous tension between us, and is seeking reassurance.  Anyway, this morning he crawled into our bed (at 5am, sigh) and found us with our arms around each other.  He bit John's hand.  Awesome.  And then the stimming.....autism affects ALL areas of life people....ALL AREAS.  

Yet Another Crossroads...

Deep breath.  This post is not about Autism.  Well, I take that back- everything in our lives is about autism in  one way or another now.  All aspects of life have been affected by our children's needs, and have been for years now, even if we have only been able to acknowledge this recently.  This blog has really become my therapy, my way of venting, being heard.  And I wasn't going to talk about this here.  I really wasn't.  But both my husband and I think, know, that it's too important to go unsaid.  And I don't feel that I would be representing myself accurately as a person or a mother if I completely excised this part of my life from the blog.

Three months ago I would have never believed I would be writing this.  Not the blog, but this specific entry.  About marriage.  About family.  But here I am.  Once again, deep breath.  This has been the hardest year of my life, and I believe my husband is on the same page.  And when I say that I didn't think I would be writing this, it's because I thought we would be separated by now.  But God had other plans for us.  Our marriage has been feeling the toll of our kids' special needs, but it has also been cracking due to our individual reactions to the revelation that our boys are challenged.  I am not blaming our problems on our children's needs, but I am saying that we were completely unprepared to deal with this.  I mean, who is prepared?  But in our case, we went in completely opposite directions when faced with the news.  My husband withdrew, really stepped away from our family as a whole.  Went down a destructive path.  I, on the other hand, became a woman obsessed. A woman consumed by "fixing" this "problem".  In our own ways, we each abandoned each other.  Now, as a "helpful" family member "reminded" us, we have had problems in our marriage for years....and of course we are aware of that, more aware than anyone else.  I would say that it started about the time our first child was born.  About 3 years after we got married.  I didn't know how to be anything other than a mom and a nurse.  I couldn't fit being a wife into the mix, just didn't know how to wear so many hats.  And my husband didn't know how to fit fatherhood into his life.  And so we drifted....and struggled.  We went to counseling a little over a year ago, right before the shit really hit the fan.  Frankly, we were too busy shoveling said shit to even get to the core of our relationship.  And so instead of drifting.....we fractured.  And I mean we are talking imminent separation.  Weeks away from it in fact.

So what changed?  Honestly, if I had to pinpoint one event....it would be the day that someone, maybe unwittingly, decided to "separate" our family before we were ready.  In my opinion, marriage, especially one that involves children, and years of commitment, and conflict, and confusion, is a very personal, sacred matter.  Only the couple involved in the marriage can make this decision.  So when we perceived that the decision was being made, and announced "for us", we both stepped back and thought, WHOAH.  My mom had sent me an email about a Catholic marriage crisis program several weeks before, which I kept in my inbox for God knows what reason- I was way past that point.  But for some reason, on that day, I mentioned it to my husband in passing.  My husband is not a fan of organized religion in general, so when he turned around, looked at me and said "wanna go?" you'd better believe it gave me pause.  And after that seed was planted, what right did I have to say no?  Our children deserve to have their parents together, to have a loving family if it is at all possible, right?  So we went....that was our "big trip" in April.  Over 48 hours of peer-led discussion, and inspiration, and writing.  And when I say writing, I mean WRITING.  Both my husband and I each have a notebook that is mostly filled at this point, between that weekend and the follow-up that we have been attending since.  6 weeks of follow-up.  Every Saturday.  For 4 hours.  4 HOURS.  It has been life changing for both of us.  Somehow, we found each other.  In the midst of all the crap that has happened, all of the pain we have been feeling over the boys, we realized that we still love each other.  And need each other.  And want our family to work, to stay together.  We have been taking our anger out on each other for a long long time.  There is so much healing left to do.  But we are on the right path.

So the crossroads....yesterday evening was our last official "session" of the program.  We have an all day event next Saturday, and then there is some further peer support available.  But other than this, and our continuing counseling of course, the training wheels are off.  In fact, we are planning to volunteer for the program.  The couple who has been leading the sessions is older, the husband can barely see, and the wife is losing her hearing.  So we are going to help.  It's a further commitment to each other, to our family.  And it's a way to make sure we take time for our marriage consistently.

I am so grateful.  I just don't know what other word fits.  Raising these boys is no joke, and they need both of their parents.  But only if we can work together.  I now believe that we can.  I have not felt this connected to my husband since the birth of our first child.  And that is huge.  The amount of work we have done these past 3 months is amazing, but I am not kidding myself....there is so much more to do.  And there always will be.  We cannot simply "be married".  It's not a descriptor.  It's an action.  That's the most important thing I have learned.

And this needs to be said as well.  My parents.  My mother.  The one who sent me the information on this program while supporting me in my decision either way.  The one who has watched our children every Saturday with a smile, and new books to read to them each week (yes Mom, I noticed them in your bag).  And my mother in law.  Who has been watching the boys during our regular counseling sessions.  And my sisters, who love me enough to support my decision to work on my family.  To all of you, thank you, for your support, and for not judging us or our problems.  Judgement helps no one, it only tears relationships apart, sometimes permanently.

I want other families to know about this program.  This is coming from a woman who was beyond counseling, had her mind "made up".  It's the reason I am taking this leap and writing about such a personal matter.  The program is called Retrouvaille and it is wonderful.  http://www.retrouvaille.org/  Religion is not shoved down your throat (although the concepts of marriage and commitment are).  The families involved in this program are extraordinary.  We have even connected with some other autism parents as a result of participating.  I guess this shouldn't be too much of a surprise.  Autism has changed our family forever.  Families affected by autism often need some extra support- and here it is for the taking.

This resonates with me more that anything else I have read....

"The Art of Marriage"

Happiness in marriage is not something that just happens.

A good marriage must be created.
In the art of marriage the little things are the big things...

It is never being too old to hold hands.


It is remembering to say "I love you" at least once a day.

It is never going to sleep angry.

It is at no time taking the other for granted;
the courtship should not end with the honeymoon,
it should continue through all the years.


It is having a mutual sense of values and common objectives.
It is standing together facing the world.


It is forming a circle of love that gathers in the whole family.


It is doing things for each other, not in the attitude
of duty or sacrifice, but in the spirit of joy.


It is speaking words of appreciation
and demonstrating gratitude in thoughtful ways.

It is not looking for perfection in each other.
It is cultivating flexibility, patience,
understanding and a sense of humor.

It is having the capacity to forgive and forget.


It is giving each other an atmosphere in which each can grow.


It is finding room for the things of the spirit.
It is a common search for the good and the beautiful.

It is establishing a relationship in which the independence is equal,
dependence is mutual and the obligation is reciprocal.

It is not only marrying the right partner, it is being the right partner.


It is discovering what marriage can be, at its best.

- by Wilferd Arlan Peterson