Sometimes it’s not.

I don’t know how else to answer that question that I’ve been hearing so much of lately from Olivia. I understand her frustration, sadness, and/or embarrassment. My heart breaks for her, but it also breaks for Christian when he is struggling, and more often than not right now, it is torn in opposite directions.

How is it fair that we have to leave a party just as she is getting settled and starting to play with cousins who she rarely sees? How is it fair that we have to ask Christian to stay in a place where he is clearly overwhelmed and in a high state of ‘fight or flight’ mode? How is it fair that she cries all the way home? How is it fair that he cries all the way there?

How is it fair that she has to sit through Sunday School when Christian gets his lesson taught by mom in a separate room? How is it fair that she has to sit through church as Brian and I take turns watching a taped service in another room because her brother can’t be in church (for reasons unknown to us)? How is it fair that he is so clearly overwhelmed by things that he cannot express in words to help us understand how he is feeling and why he is acting the way that he is?

How is it fair that she has to watch Mom wrestle her half-dressed brother out of her friend’s house when he refuses to leave and we just have to go? How is it fair that he gets to stay home when it is the day of her school play performance and she has to attend most of his functions?

How is it fair???

Sometimes it just isn’t.

It is a compromise. A give-and-take. A dance.

I pray that someday she (and he) will understand the decisions that we have had to make. That we want to make things as fair as possible, but sometimes it just isn’t possible to be ‘fair’ the way that is expected.

We had a tough time at a family event. Niece’s birthday party. The difficulty started before we even left the house. Christian didn’t want to go. He didn’t want to swim. He didn’t want to party.

Brian tried to talk to him calmly. Christian’s panic left. For a second. Until I tried to slip his sandals on his feet. Panic returned.

So, I picked him up while he fought me with all of his might, grabbing onto each doorway as we made our way out to the car. We reassured him that he didn’t have to swim. He seemed OK as he started frantically typing out credits on his iPad again.

OK, until we pulled up to the house and parked the car. My heart sank. I knew that we were not in for an easy afternoon. Yet breathlessly prayed that things would calm down.

Unfortunately, they only escalated. We tried any calming measures that we could think of, but nothing seemed to help. Everything we tried actually seemed to make it worse.

At a loss, I resorted to leaving with Christian. Does our niece really want a screaming, crying, angry 7-old at her “happy” birthday party???

Sigh.

I walked out to the car with Christian and Brian came out to grab a bag of swimming stuff that we had packed. Christian was livid that we were leaving Brian and Olivia behind. He threw his iPad and sandals at me. He clawed and cried and screamed. I cranked up the music and drove.

(Thankfully we weren’t too far from home!)

Eventually, Christian realized that he could unbuckle (since Liv wasn’t in the backseat policing his every move). Since we have the child-proof locks activated in the backseat, he decided that his escape route would be the windows. He started to roll them down and tried to climb out while I was trying to get us home as quickly (and safely) as possible.  I grabbed his leg with one hand while I clung to the wheel with the other and prayed that no wild animal would dare cross our speeding path.

Christian fought me more as we pulled into the garage, not wanting the door to close, really proving that Brian and Liv would not be home with us.

But they want to party, I said. They are at the party and will be home when it is done.

So, we wrestled about the garage door remote. I wrestled him into the house. He continued to claw and scream and cry and kick for the next (at least) half-hour. I just wanted to cry.

Once I calmed down, I found myself wish that Christian could TELL me what has going on. Why he was so angry and sad and mad. Did he hurt? Is it the teeth that are trying to make their final push through his gums? Is it the full moon? The weather changes? Is it the tag on his shorts? His sore finger? A belly ache? Is it the smells of a different house? The sounds? The textures?

I just wish that I knew. I want to understand. I long for the words coming out of his mouth telling me what IT is.

Because how can I really help without understanding the root(s) of the issue at hand???

Summer is quickly winding down. It’s hard to believe how it has blown by, yet some individual days never seem to end. We have had tremendous achievements and great fun, and we have been through some heartbreaking challenges. There are SO MANY things that I have failed to document throughout the last few months. I have debated (with myself) whether to attempt to catch it all up, but I fear that isn’t going to happen…

This summer has been a struggle for me, personally. We have many changes going on in and outside of our home. I have lost the spontaneity that I once had and get quite anxious about change. The unpredictability scares me where it once filled me with excitement. All of the changes that have happened in life over the last few years seem to have come crashing down.

I question my purpose.

I long for friendships like I once had.

I feel lost.

I am feeling as though I should be doing something more with my life than what I am currently doing, but not sure what that something should be. Unsure of how to find that answer. Yet praying that the answer will be clear. Soon.

Through it all, I have been hanging on this verse from Jeremiah 29 – “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” (verse 11)  This verse took on special meaning to me after Christian was diagnosed with ASD. It holds out hope in sometimes seemingly hopeless situations.

I felt as though I had to share this after my last post.  You can see other great posts at www.hopefulparents.org 

ASD and PTSD

AuthorMOM-NOS | DateFriday, February 11, 2011 at 5:33PM

In her book Making Peace With Autism, Susan Senator writes of the periods when her family must manage her son’s most difficult behavior, “we live as if under siege.”

In her blog, Jess from A Diary of a Mom talks about her feelings in the early days following her daughter’s diagnosis as “that awful, combustible mixture of heart-wrenching pain and abject fear.”

In the archives of my Twitter feed is a tweet I wrote during a particularly difficult school vacation, when Bud’s behavior made me afraid to leave the house with him:  “I feel like a hostage.”

As anyone who reads us knows, Susan, Jess, and I love our autistic children.  We truly, madly, deeply love them.  We celebrate them.  We advocate for them.  And yet, each of us has experienced intense feelings of hopelessness, helplessness, and fear.

I heard the same dichotomous feelings echoed by other women a few weekends ago, when I attended a social function with a phenomenal group of autism moms.  As I’d expected, over the course of our evening together, there was plenty of IEP talk, plenty of been-there-done-that edification, and plenty of laughing so hard it hurt.  But there were also more tears than I’d expected.  There was more vulnerability than I’d predicted – more fragility, more shared feelings of aloneness, more compared notes on the emotional and physical tolls that this autism parenting journey was taking on the women around the room.

It was in the middle of one of our more heart-rending conversations that one of the moms, whose husband has been serving active duty in the military, said, “You know what this is, right?  This is PTSD. Post-Traumatic Stress Disorder.  It really is.”

The group fell silent.

Then people started sharing.  The physical reaction to loud noises.  The sleepless nights.  The ceaseless anxiety.  The sensory overload.  The fear.

Not their children:  Them.

The diagnosis resonated – not for everyone, but for some.  I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time.  I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?  

It was a powerful moment.

I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children.  So, I went home and started Googling.  I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder.  The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:

Symptoms of PTSD fall into three main categories:

1. Repeated “reliving” of the event, which disturbs day-to-day activity

  • Flashback episodes, where the event seems to be happening again and again
  • Recurrent distressing memories of the event 
  • Repeated dreams of the event
  • Physical reactions to situations that remind you of the traumatic event

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feelings of detachment
  • Inability to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Less expression of moods
  • Staying away from places, people, or objects that remind you of the event
  • Sense of having no future

3. Arousal

  • Difficulty concentrating
  • Exaggerated response to things that startle you
  • Excess awareness (hypervigilance)
  • Irritability or outbursts of anger
  • Sleeping difficulties

You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical of anxiety, stress, and tension:

  • Agitation, or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest (palpitations)
  • Fever
  • Headache
  • Paleness

It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends.  Symptoms resolved within a month – those I haven’t addressed here – are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).

The source of my friends’ symptoms – the identified “trauma” – varied from woman to woman.  For some, it was the impact and subsequent upheaval of the diagnosis itself.  For others, it was an event – or series of events – involving their children’s aggressive behavior or uncontrollable tantrums or self-injurious behavior or indescribable fear.   For others, it was the toll exacted by constant vigilance – living life, day after day, in a metaphorical foxhole, watching and waiting for the next attack, but never being sure when it would come, how long it would last, and what kind of devastation it would leave behind.

For some women in the group – more, actually, than I would have imagined – autism emerged in their lives in the wake of another trauma, the physical and emotional impact of which had not been fully resolved.  Already struggling, already vulnerable, already fragile, they found their symptoms – the reliving, the avoidance, the arousal – not just heightened, but compounded by parenting a child with autism – more insidious, more difficult to pinpoint, and, somehow, more easily assumed by them to be the result of their own personal failing.

I hope that as you read this post, you don’t see yourself in its words.  But if you do – IF YOU DO – listen to me:  you are not experiencing these things because you are weak or because you’re a bad parent or because you’re just not trying hard enough.  You are experiencing these things because you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time.  

And it can get better.  Here’s what you can do:

Read about treatment options.  Here.  And here.  And here.   

Make an appointment with your physician or with a therapist.  Print the list from the National Institutes of Health, highlight the symptoms you have, and bring the list with you to the appointment.  Read this post from Jess at A Diary of a Mom if you start to lose your nerve.  Better yet, print it out and bring that with you, too.

Find a support group.  Don’t find a group of angry parents who get together and spin their wheels while they rage against the oppressive system.  Though they may call themselves “support groups,” in my experience, those groups are toxic.  Find a group of people who want to talk through the hard stuff, but who are forward-thinking problem-solvers.  If you can’t find one in your local community, take the advice of Boy Wonder’s Mom and find one online.  Look for people who are saying things that resonate with you, then join the conversation.  Don’t be afraid to jump in – bloggers are blogging because they want to connect. People are joining online communities and listservs because they are looking for others who understand.  Find them.

If you feel under siege, if you feel heart-wrenching pain and abject fear, if you feel like a hostage, then know these two things: 

You are not alone, and

It will get better.

MOM-NOS writes about the struggles and the getting better at Mom – Not Otherwise Specified.  She is delighted to report that during her son’s last school vacation, they spent a full week together and she never once felt like a hostage.  It does get better.

I can’t believe that it has been so long since I have tapped out my thoughts on this keyboard, but perhaps this post will hold some explanation…

I have been struggling quite a bit lately with emotional problems.  I have been afraid to admit it.  Scared of how others will perceive me, even though I have never thought less of others struggling with such issues.  (I have always actually thought more of them for being so honest about themselves.)

I lived for years with pretty severe PPD (postpartum depression).  I never did anything about it.  Never wanted to admit to it.  Bucked up and pushed through.  The scary thing, though, is that I was always wondering when the day would come when I just couldn’t hold it together anymore.  Yeah, I was that close to losing it.  I never wanted to die.  I never wanted to hurt my children, but I did fantasize about car accidents (when I was out by myself), being injured enough to be in the hospital for awhile, and enjoying having rest.  I was that sleep-deprived.  That emotionally shot.  That afraid of showing my “weakness” by asking for help.

Honestly, I wonder if the PPD ever totally went away.  Or maybe it rolled into PTSD (post-traumatic stress disorder), which some studies have found that parents with special children sometimes show signs of.  Or maybe I’m just steps away from being “cuckoo”.  I don’t know.

I have in the past couple of years sought out some help.  Therapy appointments.  Medications.  Vitamins.  Exercise.  I’m not convinced that the right combination has been found yet, but I do know that I need more sleep.  That is something that I will very have to work hard to achieve.  I know that I have to find ways that calm me down when the troubles start mounting.

But more than anything else, I know that I have to give up control.  For when I most try to control my universe, it seems to quickly spiral into chaos.  In steps panic, depression, worthlessness, numbness, frustration, loneliness…

God is teaching me his lesson again.  To trust in him alone, not in myself and my own power.  This is a lesson that I’m sure that I will be studying for the rest of my days. 

God help me.