Living in the Shaky Place

As a Parent Support Volunteer, one of the things that I try very hard to do is let other NICU families know about PTSD. While in the NICU, we are all waiting very impatiently for the day we can take our babies home, but unfortunately, that doesn’t mean our journey is over. After all the business of the NICU is over and you are finally at home with your baby… and there are no more current huge medical crisis going on… you come to a place where you start to process the whole traumatic birth experience and the traumatic NICU stay. This is one of the best articles I have come across spreaking of PTSD and the NICU. It is worth taking the time to read.

Living in the Shaky Place

FEB 6 2012, 12:09 PM ET  

In this essay, which first appeared on Jessica Valenti’s personal blog, the editor and writer discusses the post-traumatic response she had to her daughter’s premature birth last year.


“Compassionate action starts with seeing yourself when you start to make yourself right and when you start to make yourself wrong. At that point you could just contemplate the fact that there is a larger alternative to either of those, a more tender, shaky kind of place where you could live. This place, if you can touch it, will help you train yourself throughout your life to open further to whatever you feel, to open further rather than shut down more.” —Pema Chödrön

It started several weeks after my daughter’s birth with an itch on my c-section scar. It was an entirely normal twinge, something that happens when nerve endings are healing. But instead of noticing the itch, maybe scratching it and moving on, my knees gave out and I hit the ground.

Suddenly I was on the operating table again — multiple sets of hands in me, shifting and tugging at unknown organs. I’m not sure how long I stayed on my living room floor, but when I became aware that I wasn’t in the hospital, my hands were shaking and I was covered in sweat.

It was the first of many flashbacks I would have over the next year or so — a post-traumatic response to my daughter’s premature birth, NICU stay, and the illness I developed during pregnancy that I thought would kill me. (It’s common for parents of babies in the NICU to develop PTSD, as it is for women who have traumatic birth experiences.)

The more amorphous the symptom, the more frightening I found it. The worst, though, was the detachment I felt toward the people closest to me.

The funny thing about PTSD is that it’s sneaky. The eight weeks that Layla was in the hospital — while the emergency was still in full force — I was fine. Productive, even. I wrote articles, maintained a blog for family and friends about Layla’s progress, and went to the NICU every day to be with her. Sure, I had daily crying spells and suffered from an understandable amount of sadness and fear that comes with having a child in the hospital — but I was functioning. It was only after the crisis was over and Layla was home that everything changed. Just when I thought the nightmare of the hospital was over, a new one took residence in my home and in my head.

What happened most often was that out of nowhere I’d think that my daughter was dead. I’d be out on a walk or in another room while Layla was sleeping and I would just know that she was gone. Or that someone had killed my family while I was out. Not a fleeting “oh my God, what if” feeling; I believed these things with absolute certainty. You could not have ever convinced me that anything else was true. It was only once I saw Layla and my family that I understood they were all right.

I stopped sleeping. Sometimes thanks to nightmares, sometimes just because the rotation of horrible thoughts made it impossible to shut my eyes for more than a few minutes at a time. When most people have a bad thought they can push it out of their mind; when you have PTSD, you can lose that ability. Imagine the worst, most violent thoughts you’ve ever had about life, your family, yourself — the ones that are so awful that they pass through your mind for less than a second before you hurriedly force them out. Now imagine these thoughts are absolutely immovable; you literally cannot stop thinking them.


I started having small blackouts. The first one happened while driving home from a lunch meeting. I suddenly found myself miles past my house, an hour later, still driving. Socializing was impossible. I was afraid to do anything, terrified of having a panic attack or flashback while I was out. I used to be quite the social butterfly (OK, party girl), but now people made me anxious. I felt as if I was faking it with everyone I interacted with. It’s easy to make small talk when things are generally OK — even if you’re having a bad day you can mostly smile through it. But when you’re not sure if your sense of reality is going to change at any moment, it’s hard to pretend.

The smaller things — like memory lapses and getting easily confused — were worse than the obvious post-traumatic symptoms. I forgot conversations that I had minutes earlier, or would ask the same question several times in a short period. These minor mental shifts were more difficult because they weren’t easily attributable to trauma: I knew logically that the flashbacks would stop, but I was afraid the confusion never would.

The more amorphous the symptom, the more frightening I found it. The worst, though, was the detachment I felt toward the people closest to me. When I wasn’t having a symptom of some sort, I felt numb — it wasn’t just that I had a hard time feeling love and happiness, I also couldn’t feel anger or sadness. I was just there.

I found myself wishing that I were still covered in bruises the way I was when I first left the hospital (from the multiple injections, IVs, etc. that had to be put in pretty roughly because of my edema). When I looked hurt, at least, it was obvious that I was hurt. But without physical signs of a trauma I just looked like me, even though I felt more damaged than ever.

There’s no real cure for PTSD, though there are various kinds of treatment. The only one that worked for me was time.

It’s been about a year and a half since Layla’s birth; my PTSD, while still there, has gotten manageable. I have nightmares and don’t sleep through the night very often, but the flashbacks and panic attacks have mostly stopped. I also get the occasional intrusive awful thought, but unlike before when I fully believed the horror was real, now I have a parallel line of thinking that reminds me of the truth.

My relationships remain strained — I’ve neglected friendships, those close to me have struggled with how best to help, and some simply can’t understand why I can’t get over it already. But I’ve also met people with similar problems, people who understand and have made the numbing solitude of not trusting your own mind a little less lonely. I’m grateful for that.

I know now that the core of my trauma was the realization that life is out of my control. Life is unpredictable, scary, and sometimes tragic. Believing anything else is a false comfort. But I actually find solace in letting go. It lets me see the world more clearly, value my relationships more deeply and love the people around me more fully. In a way, experiencing my mind responding to trauma — though scary and core shaking — was freeing.

When I was a kid, maybe nine or 10 years old, my father pulled me aside during a family vacation to talk about swimming safety before I got in the ocean. He told me not to ever fight a strong current. You get too tired swimming against it and that’s how people drown — better to swim with the current toward shore, he said, no matter how far down the beach you end up from where you started.

I’m still swimming — but I’m not drowning. And though I know once I hit shore I’ll be pretty far away from where I’m started, I feel OK  about that. I’m not the same person I was before and I don’t think, if given a choice, I would want to be.


EI Introduction

Ryan had his first appointment with his therapist today. I really like her and Ryan interacted well with her too. The meeting was mostly her getting to know Ryan and us and filling out the rest of our paperwork. Most importantly, we set some goals that we would like to see Ryan achieve. Ryan’s EI session will start at 3x a month. I’m really excited to see how we can help him. Ryan is constantly making improvements – I do have to remind myself of that sometimes. Just because I don’t see the progress on a daily basis, I sometimes forgot how much progress Ryan has made in the past couple of months.

Here are our goals:

  • Ryan will be able to communicate to his family what he wants during family routines. Using gestures, signs, word/word approximation.
  • Ryan will show an understanding of every day objects, people, and pictures, etc.
  • Ryan will follow 1 step routine directions
  • Ryan will increase his attention to be able to focus on what his parents are telling him and to complete a task

I just really can’t wait to get started and do what we can to help Ryan improve. I think this beginning will be the most painful (stressful) as we try to get Ryan to communicate in a different way other than crying and throwing tantrums but I know it will be so worth and it will be less frustration for Ryan and for us!


Ten Things

This has been sort of rough weekend. Even though I knew Ryan had some developmental delays and I had suspicions since December that he was exhibiting some autistic behavior, it’s still hard to process. It’s hard for me to wrap my brain around everything. No longer is the battle waging if  I’m just that paranoid.  This weekend, I have come to realize that I am control freak. I like to be in control. When something is wrong, I want to fix it. I consider myself to be solution oriented. I don’t like to dwell on problems, I just want to figure how the best solution to fix it. It’s been sobering to realize that this is probably not going to be in my control to fix. I consider myself a “mature” Christian, but even still, God is reminding me that He is in control and not I. I fear that is something that I will always struggle with in my Christian walk. I can do nothing but leave Ryan is God’s hand and to parent Ryan the best way I can. Since Ryan’s conception I always prayed these verses:

Psalm 139

13 For it was You who created my inward parts;
You knit me together in my mother’s womb.
14 I will praise You
because I have been remarkably and wonderfully made.
Your works are wonderful,
and I know this very well.
15 My bones were not hidden from You
when I was made in secret,
when I was formed in the depths of the earth.
16 Your eyes saw me when I was formless;
all my days were written in Your book and planned
before a single one of them began.

After having Kaylen early, I struggled with enjoying each moment of pregnancy knowing full well that pregnancy doesn’t always turn out how you expect. Again, I couldn’t control my pregnancy, but these verses gave me a sense of peace that God had planned each of Ryan’s days before they had begun. It has/always will be His plan. As I work through my emotions this weekend, my mind keeps going back these verses. For as many times as I have to, I’m going to keep giving Ryan over to God.

I have spent a part of this weekend spending researching autism. I had research it briefly before, but I didn’t want to spend much time researching because I didn’t want to be analyzing Ryan’s every behavior and trying to draw a connection to autism. Now knowing that he has some red flags, I want to know more so that I can prepare myself for what to expect, things to look out for, and what we can do for Ryan to help him thrive. I keep noticing this weekend how much Ryan licks objects-like he is constantly licking our TV, tables, toys, etc.   It was interesting to find that can be a sign of autism. My first concerns with Ryan happened when I was told on a few separate occasions by different people that Ryan doesn’t really interact with other kids – that he tends to always be by himself and play alone. Couple that with the fact that his speech is delayed, he doesn’t point, he is extremely fascinated with wheels (objects that will spin), and he stares off into space quite frequently, there are some legitimate concerns for autism. As a side note, I’m still not 100% convinced or going to label Ryan as autistic, but I don’t think it is going to help Ryan if I bury my head in the sand and pretend like this might not be a very real reality for him. I am so glad that I did trust my instincts because everything that I have been reading says Early Invention is extremely helpful. Ryan’s next appointment is this Friday. I came across this powerful article and I just felt compelled to share. The one article alone gave me so much insight more that a lot of other articles I was reading.

Keep praying for Ryan and for us as we begin this journey-whether it ultimately leads us to the fact that it is Autism or that we truly just have a stubborn child on our hands that just needs more time-we do need the prayers! On a positive note, Ryan finally FINALLY, said and signed more! It brought tears to my eyes!

Ten Things Every Child with Autism Wishes You Knew

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute – the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult. Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood. Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

Because language is so difficult for me, I am very visually oriented. Please show m how to do something rather than just tell me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extre helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, and helps me manage my time and meet your expectations. I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or whatever you want to call them, are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log, noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders, and gastrointestinal problems can all have profound effects on behavior.

Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements from today’s children with autism, children like me, lie ahead? All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.

©2005 Ellen Notbohm

Evaluation with Early Intervention

We finally finished Ryan’s evaluation with Early Intervention. We had to postpone his original in-home eval because he got sick. He had his health and hearing screening first. He can hear just fine, which was no surprise to us, because if he couldn’t hear he certainly wouldn’t have been throwing himself around the room every time we told him no.

Here were his scores (compared to others in his age group – 50% would be average)

Adaptive: 5th Percentile; Personal Social: 10 percentile; Receptive Communication: <1 percentile; Expressive Communication: <1 percentile; Gross Motor: 63rd percentile; Fine Motor: 75th percentile; Cognitive: 9th percentile.

So what does all of that mean? He qualifies for Early Intervention. He is also exhibiting behaviors which are red flags for autism. Jeff and I certainly don’t want to label Ryan with Autism. We would like to see how he progresses over the next year with the help of Early Intervention. I would like to say I didn’t cry when our evaluator expressed concern over some of the red flags in Ryan’s behavior, but I did. It wasn’t tears of frustration or worry, it was almost a relief mixed with concern. I had expressed to a few people that I had concerns that maybe Ryan had some autistic behaviors, but I was always brushed off as being overly paranoid, but so while I wasn’t “glad” to see that my motherly instinct were right and felt relieved that it just wasn’t all in my head either. It’s hard in this day in age to be a parent to someone who may have a learning disability. I have already heard several times that our society rushes to judgement and is too quick to medicate children and want to diagnose them with some condition to give the parents an excuse (a way out) of dealing with their child’s issues. Being quite frank, I wish people wouldn’t just assume the same about my family. I don’t want people to think that we are going to treat Ryan as autistic just because he may have some behaviors. We are hoping that he will have a positive response to therapy and maybe it will resolve some of the behaviors. Also, this was just the first evaluation and I’m sure as we have more sessions with Early Intervention  a fuller and more complete picture will form about Ryan and where he is and his ability. I wanted to share his scores so that we can share his progress and how he is doing with some measurement of where he first started. I don’t believe in a year from now, he will be the same toddler.

What this all means to me:

Ryan gets a specialized treatment plan to help teach us how to better care for him

We will most likely have a rough road ahead of us as parents as we will have to make an even more concentrated effort to work with Ryan. We are up for the challenge. We want to see Ryan thrive and I’m excited to learn I can help Ryan meet his development milestones.

The driving force behind me posting my original post is that I just wanted some understanding. I also just needed to vent. I really dislike it when people minimize my concern. I shut down emotionally in sharing and it makes it difficult for me to be honest about how I really feel. Some may find it odd that I would share all this in a blog form, but for me this is therapeutic and allows me organize my thoughts.

My heart is really at peace. I find comfort in knowing we can get some help for Ryan. I know I haven’t failed Ryan as a parent, but it is hard at times to not let other people opinion make me question if I have really done enough. I feel like a burden has been lifted from me and I don’t have to carry the weight of not knowing what we can do to best help Ryan. I am so thankful I made the call.

I appreciate all the kind comments I received on my original post. I know I’m not alone on this journey! 🙂

A Preemie Irish Poem

A Preemie Irish Poem – reposted from Irish Premature Babies

It’s the little things that make life worth living,
It’s the little things that help us make it through.
I never knew how true those words were,
Until I first set my eyes on you.

… I feared because it was too early;
I cried because it was too soon.
Yet I underestimated
The strength in one as small as you.

You were born a fighter, a warrior;
You would not quit nor move on.
You strove, you fought, you tried,
Until your battle was won.

When hope might have faded,
When the trial seemed too great,
A tiny child, despite the odds,
Fought what was thought fate.

And a little baby triumphed,
A baby thought too small to live,
A baby knew that life
Is the most precious thing to give