Facing Loss and Embracing New Possibilities

Loss.  It’s a word we don’t want to hear, let alone experience.  Yet we all experience it.  We all know loss, not just of it.  Some of us have known it on a first name basis for too many years.  If we’re lucky, some of us know it only as an acquaintance for brief periods throughout life.

When I say “loss,” what comes to mind?  Losing a loved one to death?  Divorce or a tough breakup?  Loss of a job, a friendship, a dream?  Or maybe just all the socks that lost their mates in the laundry?  Sorry, I had to throw a random joke in.  This is a tough subject matter.

Chances are, if you’re lived long enough like me, you know loss intimately enough to define it, to know the emptiness it leaves in its wake, to know healing is hard, to know that moving forward after a great loss can seem insurmountable in the moment of grieving.

I was in a Bible study once where the question was asked: What do you think the saddest word in the English language is?

My answer?  Hopelessness.

Whoever wrote that study agreed with me.  Now maybe you have another word, but I’d suspect that hopelessness would be in your top ten most depressing words.  Hopelessness and loss are often intertwined like a tight braid, held in place by an elastic of grief, anger, sadness, and denial.

Then where is acceptance, which can lead to hope?

My earliest memories of loss aren’t deep: a goldfish being flushed down the toilet, our outdoor pet bunny escaping and running away, attending wakes and funerals of people I didn’t really know.

For me, the loss of my innocence at an early age, something precious ripped from me, was the type of loss that affected me the most at the time.  When I was eight years old, two boys in my neighborhood, barely older than me, sexually molested me.  They had access to pornography.  It wasn’t sex, but it was bad enough.  I knew enough to know that “stuff down there” could cause pregnancy and AIDS, which had just come out as the latest big disease scare.  For months, I thought I was going to die of AIDS and prayed several times a day to God: “Please don’t let me have AIDS.”  Luckily, I told my parents what happened, and they went to the police.  I stayed away from those boys, but it never went to court.  No one was held accountable.  Maybe worse than thinking I had AIDS was that it seemed like everyone at school knew my secret.  Those boys told other kids.  I remember feeling dirty and violated for years after the incident as I walked the halls, sometimes being asked, “Were you raped?”  As a child, I couldn’t pinpoint terms like “dirty” and “violated” to describe the uncomfortable feeling of a slimy snake creeping inside me when people stared and asked rude questions, but I know now that was what I was feeling.

pablo (1)

But I survived because of the kids who were my friends and because of my family.  I had parents who loved me.  I had a few good friends who stuck by my side, and as the years passed, the news of it died.  Understanding more about “stuff down there,” I knew I wouldn’t die of AIDS.  I stayed away from those boys as much as possible.

My next experience with a huge loss came when I was 15 and lost both of my grandmas within two weeks of each other.  My dad’s mom had been battling cancer for over a year, and she lived in Kentucky, so I rarely saw her and wasn’t that close to her.  While my dad and brother attended her funeral, my mom and I stayed home to be with her mom, who was in the hospital.  We received the news no one wants to hear–the cancer had metastasized to her lungs (from a sarcoma on her leg the previous year), and there was nothing to be done.  Even chemo would only give her a small chance.  She was already 81 years old and didn’t want to go through that.  Despite being given two to six months, she passed a mere two weeks later.  She was at our house, so she died surrounded by family and didn’t suffer for long.

I had always known my life with my dear grandma.  We visited her every Sunday after church.  She had that warm voice that greeted us and those rosy cheeks and that beautiful smile.  She always had candy in her purse and cookies on top of her fridge.  She had her quirks from living through the Great Depression of watering down her shampoo, of saving a hundred plastic bags, and of using the smallest amount of batter left to make a quarter-sized pancake an eighth inch thick.  She burned her pizza that tasted like cardboard, but her pork chops were marvelous.  She spent every Thanksgiving, Christmas, and Easter with us.  She went on numerous vacations with my family.  She was special.

pablo (2)So how could I, at 15, understand what it meant to face life without one of the most important people?  While she was still in the hospital, I wrote a letter to her, where I told her brave she was, how much I loved and admired her, and asked her to send me a sign upon reaching Heaven.  She passed on a dreary early April day.  The rain continued until the day of her funeral four days later.  After we came home from an emotionally draining day, my mom called me to look out the window with her.  Stretched across the clearing sky was a beautiful rainbow!  I knew this was her sign to me!  Just as soon as my mom and I saw Grandma’s rainbow, it faded.  I had no doubts.  I found comfort in that rainbow.  Even though I would miss her dearly, time had helped heal the immediate stabbing loss.  A scar remains on my heart, but my grandma and her rainbow would go on to create something miraculous.

I wrote her life story in a fictionalized account and published it a year ago.  She has been my inspiration to write more books, to embrace what I call my heart’s song, my raison d’etre.  Not only died my grandma give me hope and the possibility to write, but my daughter is named after her.  Emma was a surprise child, not planned but welcomed and blessed!

Out of loss came immense possibility that became reality.

As the years went on, I would know the loss of a relationship with a boy who I once was in love with, but I would then meet the wonderful man who would become my husband and the father to my children, who I’ve been married to for 14 years.

We enjoyed several years of marriage where it was just the two of us.  We got to know each other more intimately.  We travelled to Italy, Hawaii, the Caribbean.  We focused on our careers.  We got a house together and made it our own.

The next step seemed obvious: children.  I was in my late twenties.  Everyone around me seemed to be getting pregnant, so I knew I was at that life stage when it was time.  My husband, Erik, and I were ready…as ready as we could be.

pablo (3)Little did I know how hard our journey to conceive would become.  Every month would come and go the same: hope that this would be the month we got lucky, only to flee with more tears and heartache at an empty womb.  This trend would continue for the next two and a half years.  My husband and I went through testing.  They could find nothing wrong.  We tried artificial insemination three times…nothing.  We were told fertility drugs would only increase the chances slightly, so we held off.  As 2008 drew to a close, we were on the verge of trying in vitro.  Drained beyond panic and exhaustion at this point, I suggested we held off for six months and just tried to relax and enjoy life again.  We had put so much pressure on ourselves to conceive that I was just done.  With it being Christmas, my favorite time of year, I didn’t want to deny myself drinking some wine and the general fun of the festivities.  

That Christmas was great.  Pictures from the time show a true smile on my face, surrounded by coworkers, friends, and family.  I stopped thinking so much about conceiving.

The New Year came.  I was late.  Of course, there had been a few months when I had been tricked before by this very thing.  Why did early pregnancy symptoms have to mirror the ones I got when it was that time of the month?  I knew the stabbing pain of loss from too many months of not conceiving, and I didn’t want to be tricked again.  Why get my hopes up?

But I couldn’t wait.  It was now five days past.  In the bathroom at work, I took a pregnancy test.  When two lines appeared instead of one, I thought for sure this was a dream.  You can imagine my elation!  Finally!

All those months of loss died upon receiving this amazing news.  My pregnancy would continue as healthy, and I gave birth to a 7 pound boy right on his due date of September 10, 2009.  Luke was a miracle baby, a baby so many friends and family, and my husband and I, had been praying for for years.  

As Luke grew, we knew we wanted to grow our family more.  The stresses of trying to conceive were no longer a problem because we knew we could do it.  Luke was now a toddler, a happy kid who was walking and beginning to talk.  A younger brother or sister would be great for him.  As we wanted our kids close in age (2-3 years apart), we decided the time was ripe.  On New Year’s Eve of 2010, I had a hunch I was pregnant and took a test.  It was positive!  The exciting thing was that this second baby would be due the same date as Luke’s birthday!  We attended a friend’s party that evening, and I declined the wine.  The other girls gave me knowing looks, two of whom were pregnant.  We all squealed quietly.  

On January 12, 2011, I miscarried.  Sure, it was early…only six weeks in, but the loss of my baby hit me like a train.  Loss of life is tragic, no matter how old.  A mother carries her child in her for the first nine months.  She and the child are literally a part of each other during that time.  I think I cried more that day than I ever had.  My prayers to save the child went unfulfilled.  I was devastated.  How could I possibly move on from this?

One thing I knew: I didn’t want to keep my loss to myself.  Having a miscarriage is understandably a very private thing for many people, but suffering alone is daunting.  I shared my experience with those around me, mostly other women from church and my friends.  What did I immediately notice?  How common miscarriages were.  How many people related and understood what I’d been through.  If it weren’t for these brave, strong women supporting me through this tough time, I wouldn’t have been able to heal.  Of course, a woman never can forget her lost child, but with the support of friends and the passage of time, healing can occur.

My doctor encouraged me to try to have another baby after allowing my body (and mind) to heal for a month.  Would you believe I got pregnant that first month?  After the hardship of trying to conceive with our first child, there was no pressure.  I had another healthy boy that November: Josh.

As my boys grew, life seemed to fall into a comfortable routine.  I continued to stay home with Luke and Josh.  The boys played together and were both generally happy kids.  As Luke got older, however, we noticed that he wasn’t developing socially and verbally like other kids his age.  We had already enrolled him in speech therapy soon after turning two, as he didn’t have many words.  Seeing little progress over several months with therapy and Help Me Grow intervening in our home, it was suggested that I take him to a developmental pediatrician.

Luke wasn’t even three years old when we got the diagnosis: moderate autism with a speech delay.  My husband and I sat there as the developmental pediatrician, a speech therapist, and a psychiatrist gave us the news.  We were inundated with information in the form of tons of papers of what we should be doing as far as intervention, plans to move forward, what the diagnosis meant, and so much more that I couldn’t process it all.  

I went home, determined to be proactive.  I enrolled Luke in occupational therapy (OT) for his fine motor delays.  Help Me Grow got us set up with the preschool in our city, and he would be receiving services there.  We would continue private speech.  I read through the information and tried to arm myself with knowledge, hoping that early intervention would make a difference.  My son was still so young, after all.  He had time to catch up with his peers.

Luke made progress, but it was slow.  He, to this day, speaks in single words or short phrases to express his wants and needs.  We paid a lady to come into our home to potty train him over a weekend, and it was successful…only to have that work undone a couple of years later when he regressed with no understandable reason why.  We haven’t been able to completely get back to where we were with toileting.

While usually a happy kid, Luke has been prone to meltdowns, especially when overloaded due to sensory processing issues.  Loud noises, crowded rooms, hunger, cold, heat, tiredness, and more can trigger a meltdown.  When he was smaller, it was easy enough to pick him up and put him in his room until he calmed down.  

As he’s grown, his meltdowns have gotten harder to control and more violent.  He kicks, hits, pulls hair, throws thing, and pulls pictures off walls.  We’ve had to remove the lamps and anything breakable from his bedroom.  He is on a medication to help with the meltdowns, and while they are less frequent, they can happen without provocation.  His mood can change like someone has flipped a switch.  As his mother, it breaks my heart to see him like this, to know he cannot express himself like he wants to.

pablo (4)My biggest struggle is facing the loss of the son who I thought I would have.  I will be honest.  I hate autism most days.  Look what it does to my son.  As moms, we have these too-perfect dreams of what our kids are going to be like.  Sure, we expect them to have some struggles and quirks, but a diagnosis like autism… Who expects that?  I often rant and rail at God at the unfairness of it all.  I have cried bitter, angry, dejected tears in the middle of the night or locked away in my closet because–let’s be honest–it’s not fair.  Even yelling at God is prayer, however.  Any communication with God is prayer.  Knowing that helps.  God can handle my anger.

Soon after the diagnosis, after a few weeks of trying to hold it together and be proactive, depression grabbed hold of me and pulled me down.  I took out my anger and hurt on those closest to me.  Sadly, from time to time, I have turned to this dark place because sometimes I just cannot take it.  I feel unqualified, underprepared, unable to raise a special needs child.  Did God really think I could handle this?  

I have been through plenty of times of loss in my life, but those losses have either resolved themselves or have found a way of healing.  This time, this loss is ongoing.  There’s no end in sight.  This is lifelong.

So what do I do?  How do I choose to face this epic loss and embrace a new possibility?  Hard truth: I embrace the loss of my picture-perfect dream and truly embrace the boy who is my son.  Because he is my son.  He is a person worthy of love and deserving of understanding.   No diagnosis changes a mother’s love for her child.

If it weren’t for Luke’s autism, I would not have met many other precious people in my life.  I have cried with other moms “who get it.”  I have hugged and been their source of encouragement, and they have returned the favor.  Other people have been strong for me when I couldn’t be.  My parents, my church, my friends…they are the true heroes here, not me.

And God.  I cannot understand why Luke has autism, but I believe God works good from the bad.  My heart and mind have been opened by raising a special needs child.  I believe I am more compassionate and understanding of others who have various diagnoses.  I believe we all will go through some sort of diagnosis at some point in life.  It’s all part of living.  God holds us and sustains us through, often by using other people in our lives to carry us when we cannot walk.

Whatever loss you’re facing in your life, I ask you to take some time to try to see a new possibility in it.  Every experience is a chance to grow, to learn something, to continue in hope.

That is a much better place to be than alone and suffering in your loss.  Loss is just as much a part of life as gain.  I believe there is much to be gained in loss–hope for tomorrow.

Like what you’ve read?  Please subscribe to my blog, where I post a new blog every Friday, including book reviews.

My new novel, Lorna versus Laura, is available for only $2.99 here.

My first novel, Hannah’s Rainbow: Every Color Beautiful,  is available for $3.99 here.

 

Review of Life as a Spectrum Mom: The Ups, Downs, and Upside Downs of Parenting Autistic Kids by Karen Pellett

I love the title of this quirky and honest book because I am also a spectrum mom.

Now try saying the title fast three times while I sit back and smile.

Okay, in all seriousness (or not)… Can I really take life so seriously?  Karen Pellett, despite raising not only one kiddo on the spectrum, like me, has three.  Yes, three.  And she manages to find humor in her situation because, honestly, sometimes all you can do is laugh when life takes a detour around every carefully crafted plan you had for your kids, and life seems to be mocking you as your child melts down for the fifth time in ten minutes.

This is the first review of a nonfiction book I’m doing, and while I usually read fiction, because I am trying to escape from brutal reality at times, I felt drawn to this mom’s story because I understand her pain, her worries, her frustrations, her joys, her laughter.  Anyone who is a parent understands these sentiments in regards to raising children–the hardest job you will ever, ever have…and no one is paying you to do it.

The author begins the book by sharing facts about her three kids (a girl born first, followed by two boys, all in three years)–their names, their quirks, their diagnoses, etc.  She also explains how she had a vision of what her family would look like before having kids and how that changed quickly.  It was either get on board with what she’d been dealt with or continue in denial, refusing to accept it.

19731995_105797236735907_8646364323264698290_n

I commiserated with her when she said it took years to conceive their first child, as my husband and I also went through that.  Then you get the best news ever–you’re pregnant!  But then after the child is born, you start to realize she or he isn’t developing typically.  For us, our son had delayed speech.  At 24 months, he hardly spoke, and we got him started with speech therapy.  Nine months later, he was diagnosed as autistic.  Karen’s daughter has ADHD and sensory processing disorder (SPD).  My son also has ADHD, although it wasn’t until last year that was confirmed.  Both of our oldest kids are eight.  

But as Karen’s story continued and she almost died while giving birth to her last kid, I soon realized that I had to take a step back.  I am not one for comparing heartaches, but I can say her situation is harder than mine.  I know how it feels to watch helplessly as your child grows frustrated and has a meltdown, which results in throwing things, kicking, hitting, and ripping pictures off the walls.  As a mother, nothing hurts more than seeing your kids in pain, whether that pain be physical, mental, or emotional.  If we could, we would take it away.

But that is not the reality of things.  I love how Karen has shared funny stories in the midst of telling her tale, which often is quite serious–like her injuring her back and needing surgery or having a car seat thrown at her head, resulting in a concussion.  She is a strong woman who has been through more than most, and I admire her brutal honesty in sharing her story.  Books like hers as essential for bringing awareness and understanding to autism.

While I don’t often feel judged by the public eye when my son acts out, I know there is still ignorance out there.  I was at the library (alone, for once) and walking out when I passed a mother and her son, who were standing off to the side.  The boy was obviously autistic, exhibiting the hand-flapping, bouncing in place, and vocalizations my own son does.  He was about ten and wasn’t wearing pants or shorts.  He had on a diaper, a shirt, shoes, and socks.  Now, I don’t know what was going on, but even when a mom tries to be prepared with extra clothes and diapers, accidents happen.  Also, autistic kids have sensitives, sometimes resisting clothing.  I continued on my way out, but an older lady stopped me and asked why that boy wasn’t wearing pants.  I am glad she asked me, as I was able to explain to her that the boy was autistic.  I don’t know if this woman knew nothing about autism, but she was shocked and seemed to judge the mother for not having pants on the boy.

My purpose in sharing this story is to drive home the importance of autism awareness.  I will promote it and push it.  That said, I highly recommend you read Karen Pellett’s eye-opening book.  You don’t have to relate to her or have autistic kids, but I believe her book brings servings of awareness to the table of autism.

5/5 stars

Buy Karen Pellett’s book here.

Like what you’ve read?  Please subscribe to my blog, where I post a new blog every Friday and a book review the second Friday.

My new novel, Lorna versus Laura, is available for only $2.99 here.

My first novel, Hannah’s Rainbow: Every Color Beautiful,  is available for $3.99 here.

 

Autism – More than Just Awareness

 

April is Autism Awareness Month.  Autism Speaks, an advocacy program, began back in 2005 and created Autism Awareness Month.  Every April 2, this awareness program/campaign/whatever you want to call it kicks off with buildings worldwide lit in blue, people wearing blue, and just blue, blue, blue everywhere to “light it up blue.”  This is great, but as a mom of an autistic son, I can tell you that for many on the outside, it’s easy to celebrate Autism Awareness Month like it’s something fun, like a fad, or because it seems like the cool thing to do.  For those on the inside, it’s a different sort of celebration, a party that you sometimes wish you weren’t invited to.

I get the impression with many of these awareness campaigns that we need to go deeper than just wearing a certain color and creating awareness.  That’s a good start, but for those directly affected by the condition (whatever it may be — there are awareness campaigns for almost anything, like October being Breast Cancer Awareness Month), awareness is not enough.  Some of us are all too aware.  Those who are affected live it out every day of their lives, whether the person has the condition him- or herself or it’s a close loved one.

Let me be clear: There is nothing cool about celebrating Autism Awareness Month if all you wish to do is participate halfheartedly in something that’s widespread.  Autism is serious.  It’s no joke.  While we do want to celebrate those who have autism, I wish to distinguish between celebrating individuals and celebrating as if you were invited to a Super Bowl party.  There is a world of difference.

Before I go further, I would like to direct your attention to my two previous blogs related to autism.  It will help you understanding better my son’s and my own experiences.  They can be found here: Blessings in Disguise – What Raising a Child with Autism Has Taught Me and You Don’t Know What Goes on Behind Closed Doors – Raising a Child with Autism.

Now that you’re back, let’s continue.  There is a popular video on YouTube called Welcome to Holland.  Its purpose is to help you understand that it’s okay to take a different route when raising a child with special needs, even though this wasn’t what you signed up for.  The video goes something like this: You board a plane to take a trip to Italy, but when you step off, you find out you’re in Holland.  At first, you’re confused and angry because you were supposed to be in Italy.  That was the plan.  But as you start to look around Holland, even though it’s different than Italy and not what you expected, it has plenty of its own treasures.  It has tulips and windmills, for example.  So, the point of this metaphor is to find the beauty in your unexpected trip with raising a special needs kid.

There is comfort in this for some.  At times, it brings me peace.  When things are going relatively well with my son, Luke, it’s easy to celebrate the small victories he makes.  I value his differences from a typical child.

But let me be brutally honest.  There are many days when I hate Holland.  I hate autism.  I hate what it does to my son, the hold it has on him.  It breaks my heart to see him suffer where others don’t.  I want to say, “This isn’t the same thing as just stepping off a plane and finding out you’re somewhere else that’s equally beautiful!  I’ve arrived in Antarctica!”

I can only speak from my experience, so please don’t think that what I say applies to everyone across the spectrum.  While high-functioning autistic people are usually able to contribute to society as adults, they will always have their own set of challenges.  I do not dismiss someone who is high-functioning or raising a high-functioning autistic child as having it easy at all.  But my experiences do not deal with a high-functioning autistic child, so I will not be further addressing that.

luke_toothless_smile

Luke was diagnosed as moderate to severely autistic when he was not quite three.  Because he was still very young, I believed he might outgrow the diagnosis.  I thought he could, if not catch up with his peers, at least reach a point where he would be capable of forming longer sentences instead of phrases, that he would be able to answer questions (not just by rote), or that he would be able to tell us how he’s feeling and why.  In those early days, I told people his condition was mild to moderate.  I didn’t want to face the seemingly bleak reality that his autism was
more severe than we thought.

As he’s gotten older (he’s now seven and a half years old), progress has been made, but it hasn’t gone the way I’d hoped five years ago.  There I go again, getting my hopes up as a parent, and coming away with the stabbing feeling that this isn’t going the way I wanted.  It’s hard.  I mean, really hard, to swallow that large pill of a serious diagnosis that scrapes all the way down and then settles in the stomach like a lead ball.

But admitting this as truth to myself and then to others was the first step of my own awareness of Luke’s true condition.  Awareness was the starting point.  Then came the challenge of acceptance.  Acceptance, unlike awareness — at least for me — is a constant journey.  The road is sometimes clear and straight.  Days are going well.  Luke is happy.

But then night falls.  The path makes a sharp, unexpected turn.  Fog sets in.  Sometimes the road even drops out from under me completely.  I’m left gripping on for my life, like trying to keep my head above water and not drown.  Days are awful.  Luke is angry, sad, or any number of bad emotions.

See, acceptance is harder than awareness.  Acceptance is difficult for those who are closest to a loved one who has autism.  It’s a challenge for some who have autism and know it.  Let me be clear: I accept my son for who he is, regardless of his autism.  His condition does not define him.  It’s part of who he is, but it is not him.  What I struggle to accept is him having autism — what it does to him, how it makes him feel or act, the challenges it gives him.

So, imagine how hard it can be for others on the outside to accept autism (or any condition).  It’s easy to say you accept autism, that it’s a real thing that exists, but I’m going deeper here.  People need to be accepting of individuals who have autism.  That’s where awareness only goes so far.  That’s where the party we’re celebrating goes from Super Bowl to something more: celebrating the unique abilities and qualities of people who have autism.

I can take this further by saying that accepting those who have any mental or physical condition/diagnosis or developmental delay is vital.  Raising an autistic child has made me more aware across the board when it comes to seeing people for themselves and not their conditions.  Like we all have different abilities and talents, quirks, nitpicks, tastes, or anything, those are parts of us, but not all of us.  If I say I am a mom, it’s part of me, but not my entire identity.  If I say Luke has autism, it’s part of him, not his whole person.

This awareness has brought more compassion into my heart, a desire to understand as best as I can where other people are coming from.  Instead of judgment, I choose to embrace compassion.  This world has enough judgment.

That child who is freaking out in the store may be throwing a tantrum because he didn’t get the toy he wanted, but he also might be having a sensory-induced meltdown that’s beyond his control.  He might be autistic and overwhelmed by the bright lights or the noises in the environment.  If he’s hungry or tired, the effects of that are far worse than for a typical person.  Think of how irritable you can be when you’re hungry or tired.  Now imagine it for an autistic person, especially a child who has limited (or no) verbal ability to express himself.  All he can do is scream.  He might kick, hit, bang his head, throw things, or scratch.  He can hurt himself and others.  He feels like his world is ending.  Like there is no escape.  All is blackness.  That is a meltdown.  Until it passes, you stand there, helpless.  As a mother, it rips my heart a little every time.

Some days, I hold it together and can handle meltdowns in stride.  It’s part of my life.  It’s nothing new or unexpected.

Some days, those dark ones I described above, I fall apart, too.  I have disciplined my autistic son for having a meltdown, despite it being beyond his control.  I have yelled, cried, screamed.  I then go into my closet and sob, the guilt setting in.  I did it again.  I failed to be a good mother.

But you know what?  I don’t really fail.  Because even when that tough road tries to knock me down, I get back up.  I am a fighter.  My son is a fighter.  I advocate.  I never give up.  Never.  Ever.  Giving up is the only way to fail.

The road to acceptance is taken with every step of advocacy.  Awareness started the journey.  Advocacy keeps you and me going.  I am the voice for my son, Luke, because he can’t be.  I write these blogs to share my experience because I will keep fighting for awareness, acceptance, and advocacy.

We have been down the road of therapies and medications.  There have been unreturned phone calls from doctors.  There have been stubborn employees in the school transportation office.  There have been people who have stared.  I see the judgment in their eyes, but my concern is and always will be fighting for my son.  I have called the right people to get answers and demanded the respect of getting in touch with the doctor.  I have taken my transportation concerns to the special education department and gotten a solution within hours.  I have resorted to begging with a secretary to see what’s taking the doctor so long, because my son is about to lose it in that waiting room, and waiting more than fifteen minutes past our appointment time is not acceptable.

That is empowering.  To fight, to stand up, to be strong even when it hurts, that is powerful.

So, there have been pitfalls.  There have been people who have made our journey tedious, but the vast majority of people we’ve encountered have been kind, generous, and understanding.

The most recent example of this was during spring break at the Y.  I had signed Luke up for the Y’s spring sports camp.  I was unsure of how it would go over because this camp is not aimed at special needs kids, unlike any other camp Luke has previously attended.  The director welcomed him to attend, and if it didn’t work out, that would be okay.

Because we are members of the Y, I stayed and worked out for a couple of hours after dropping Luke off at camp.  The environment was simply too overwhelming for him.  The noise level of twenty kids running around screaming in the gym drove him to the breaking point.  The result was not pretty.  His meltdown was one of the most intense I’ve seen since we got him on a medication to help with his irritability (which had been causing severe, frequent meltdowns for months).  I couldn’t blame him in the least.  After ten excruciating minutes, he calmed enough for me to hold him in my lap, but he didn’t want to leave me.  We sat in the gym for the next hour, but he was done.  The director and the other employees were all understanding and nice.  I was given a full refund.  They were genuine with Luke, too, seeing him as a person worthy of attention and respect.  They high-fived him, greeted him, called him “buddy,” and smiled at him.

While I say that awareness, acceptance, and advocacy are all vital to helping those on the outside to understand autistic individuals better, to value them, to respect them, and to love them, my overall experience has been positive in this regard.  Society has made good progress over the years with opening the eyes and hearts of typical people to those who have some sort of condition.

There is still ignorance, misunderstanding, fear, and disrespect in the community, however.  The simple act of calling someone “dumb” or “stupid” or the R-word is demeaning.  Even in jest, it is not funny.  Anyone who judges a person who has increased difficulty learning, socializing, or with life skills has missed a crucial mark of what it means to have their humanity.

Every person is worthy of love, respect, and understanding.  Their conditions do not define them.

Autism is just one of many conditions.  Let us be more than aware autism exists.  Let us truly accept those who have it and work toward a better future of increased opportunities and happiness for them.

Like what you’ve read?  Want to read more of my stuff?  Please follow this blog!

Also, check out my novel, Hannah’s Rainbow: Every Color Beautiful, now available for only $2.99 on Amazon: Hannah’s Rainbow: Every Color Beautiful

Blessings in Disguise – What Raising a Child with Autism Has Taught Me

In recognition of Autism Awareness Month, I am reposting this autism-related post from a few months ago.  A new post related to autism will be posted at the end of April.

“’Cause what if your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You’re near

What if trials of this life are Your mercies in disguise”

These words speak to me.  They aren’t mine, but they are powerful.  If you aren’t familiar with Laura Story’s song, “Blessings,” I encourage you to check it out.  It’s a beautiful testimony to how God can bring good out of tragedy in life.

I wrote a blog post a couple of weeks ago called You Don’t Know What Goes on Behind Closed Doors – Raising a Child with Autism.  If you haven’t yet read that post, I suggest you do so, as this post is a follow up from that one.

By now, you know I’m a mom of a son who has autism.  If you’re also a special needs parent, you know the extra challenges involved.  There are things that parents of typically-developing children don’t have to think about often, like extra therapies, taking longer with homework, struggling to dress your child, dealing with meltdowns, and trying to figure out what they want when their communication is limited.

Having other parents who understand the struggles I face has been vital to my journey as a special needs parent.  I’ve been a part of a support group for the past four years, and about three years ago, at one of our meetings, talk of faith and God came up.  While this is a secular group at meets in a library, faith plays in important part in many of these parents’ journeys.

faith

Questions arise: Did God really think I could handle this?  Why does my child have to suffer from _____?  Will my child ever get better?  Where is God in all this?

It felt like God was prodding me to lead a study on this topic.  I found a great resource called Unlocking the Treasure – A Bible Study for Moms Entrusted with Special-Needs Children, by Bev Roozebloom.  It was almost too easy how everything fell into place.  I talked to the right people at my church and secured a meeting room and time.  I got a group of about ten women to sign up and meet every other week for six sessions.  The resource was easy to find, and everyone agreed that it was perfect for our needs as a group.

That Bible study was very meaningful for those women and for me as the facilitator.  Every so often, I run into one of the moms who participated, and she shares with me that she still remembers it and how much it helped her.

Many of us have heard the phrase “God doesn’t give you more than you can handle.”   This simply isn’t true.  There are times when we are overwhelmed and cannot possibly handle everything on our plates.  That’s when we need others.  God works through others to carry us through hard times.  So, where is God in the day-to-day challenges of raising a special needs child?  Right here, working through other people who are blessings in our lives.  If we feel alone, that’s simply not true.  There are others out there who understand and who can and want to help.

While there are no easy answers for why some children suffer from certain disabilities, I do believe that God works through them to bring good from the bad.  If my son didn’t have autism, I don’t think I would have the awareness I do about all the people out there who struggle because of developmental delays and such.  I do not think I would be as open-minded, patient, or compassionate of a person toward others, in general, who may have any sort of disability, especially the “invisible” ones.

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

I love this quote because it speaks to the essence that we’re all different.  We all have different abilities and talents, so let’s remember that just because someone has autism or some other sort of special need, that doesn’t mean they aren’t just as important and worthy of love as anyone.

To learn to be a better person by being more accepting and loving is a blessing, so at the end of the day, I can find some peace.  I can see that elusive silver-lining in the storm clouds that sometimes fly in during the journey of being a special needs parent.

I encourage you to find those blessings, too.  They are there.

Like what you’ve read?  Want to read more of my stuff?  Please follow this blog!

Also, check out my novel, Hannah’s Rainbow: Every Color Beautiful, now available for only $2.99 on Amazon: Hannah’s Rainbow: Every Color Beautiful

You Don’t Know What Goes on Behind Closed Doors – Raising a Child with Autism

In honor of Autism Awareness Month, I am reposting my two autism-related blogs during the month of April and will have a new autism-related blog up by the end of the month!  Here is the first reblog:

Many of you won’t know what it’s like, but there are many of you out there who understand what it entails to raise a child with autism or any sort of special need.  For me, it’s the most challenging part of my life that I face every day.  My oldest son, Luke, just turned seven years old, and he was diagnosed with moderate-severe autism just before the age of three.

The first thing we noticed was a speech delay.  By age two, he was hardly speaking, but he was a happy kid.  We started speech therapy and got him in Help Me Grow.  From there, he began preschool in the public school system in a 50:50 peer model:special needs program.  He was on an IEP and was receiving services at school: speech, occupational, and physical therapy.  We were also taking him to private therapies.

We tried one year of preschool at an ABA-based (applied behavioral analysis) school, but it wasn’t the right fit for him.  Unfortunately, that was when we started seeing a big decline in his learning.  He was actually regressing.  Things he’d known for the last couple of years, like his ABCs and numbers, were no longer of interest to him, or he simply lost the ability to recognize them.

We returned to the public school system for kindergarten and had a much better experience.  He’s in the intensive needs classroom with just a few other boys, a teacher, and two aides.  In first grade, he continues to be in the same setting, luckily with the same teacher and aides.

But these are all facts.  Facts are easy to share.  What’s hard is the emotional journey that we travel as a family every day, knowing that this is lifelong.  This isn’t something that will just go away like a cold or the flu.

luke_toothless_smileThere are a few well-meaning people who tell me, “You never know, he might grow out of it.”  While this may be possible, as there are cases where autistic children suddenly make huge progress at later ages, the hard truth is that most don’t.  I’m not being a pessimist here, but rather a realist.

If I’m being frank, progress hasn’t been what I had hoped for when we first began this journey, but I’ve learned to celebrate every tiny victory.  My son loves swimming, for example, and he has shown remarkable improvement in lessons lately.  He has begun to swim on his own, which is huge.

But there is the admission that every parent is afraid to make to themselves: their child isn’t progressing like their peers.  It’s hard, really hard, to see your child struggling where other children seem to have it so easy.  When the child’s younger siblings bypass them in speaking, writing, drawing, reading, and so on, the gap continues to widen as time passes.

There are days when we barely seem to be keeping our heads above the water.  Usually autistic children have other diagnoses, and such is the case for my son.  Earlier this year, it was confirmed that he also has ADHD.  So, he has sensory meltdowns caused by autism and hyperactivity as well.  Trying to find a medication to help with the ADHD hasn’t been easy, for the side effects are often unpredictable in autistic kids.  He’s had more meltdowns when on stimulants, making the lessening of the hyperactivity not worth it.  So, here’s the question: Do I want to deal with a kid who does impulsive things, like unrolling a whole roll of paper towels or opening a jar of applesauce and spreading it all over the floor, or do I want to manage a kid who is melting down every fifteen minutes and trying to find a way to make him calm?

To others on the outside, I may seem to “have it all together.”  Whatever that means.  Let me assure you that this is an illusion.  I don’t know how I manage to keep my house as clean as I do, take care of two other kids, run errands, cook dinner, etc.

There are many days when my patience is at an end and I have just had enough.  I cry in my closet, angry that I can’t be a better mother or frustrated that MY kid has to suffer where others don’t.  I want to rant and rail at God, that it’s just not fair!  Why did You think I could do this?  I feel like the least equipped mother in the world sometimes, especially when I know that punishing an autistic/ADHD child for behaviors that he cannot help is not going to help anyone.

Some people tell me that I let him get away with things I shouldn’t.  Some tell me that he knows better, that he’s testing me.  There are times I believe this, and while there are cases when this thinking can be correct, it often isn’t.  Trying to discern when it is and when it’s not correct isn’t always easy.

For example, let me be clear that a sensory-induced meltdown is not a tantrum.  They may both result in the child crying, screaming, kicking, and flailing around on the floor, but a tantrum is the result of a kid not getting something they want.  A meltdown is caused by sensory-overload (like loud noises, bright lights, uncomfortable fabric, certain food textures, odd smells, etc.), and it may be that we don’t even know the cause!  We’ve all put on a scratchy sweater that we just had to take off.  We’ve all felt our heads spin from being too tired when walking around in an over-crowded store.  Imagine feeling overwhelmed ALL THE TIME.  This is an autistic person’s reality.  Then imagine someone punishing you for freaking out over feeling overwhelmed.

What I can tell you is that in the midst of wondering what good can come from of this, I have found that I am a more compassionate person, a more aware person, because my child has autism.  I understand that everyone deals with something at some time during their lives, whether it be depression or loss of the ability to walk.  Everyone is fighting some sort of battle, and it’s often behind closed doors.  Start talking to anyone, and you soon discover that person has a loved one who’s dying from cancer, that they’re in financial ruin, that they’re going through a messy divorce, or that their grown child has just been drafted overseas.

I also have come to believe that having a support system is crucial to going on this journey.  There are the teachers and therapists who work with my son who have been a godsend, but there are also people in my life who help me get through every day.  It’s often other special needs parents who “get it.”  Sometimes, we just want to commiserate with someone who understands.  We’re not looking for advice or the latest research article on special diets, genes that have just been discovered, or on whether or not to vaccinate.  We’re not looking for someone to come along and give us all the answers.  We just want to say “This sucks right now.”  We need to cry or rant or just be in silence.  I had another mom agree with me once and say “This is our reality, cleaning up poop.”  Yes, that was true, and it was reassuring to hear it from someone who understood.

And sometimes we need to remember to be thankful.  There are victories.  The small things DO matter.  At the end of the day, this child is still mine, and I love him.  No diagnosis can change that.

Like what you’ve read?  Want to read more of my stuff?  Please follow this blog!

Also, check out my novel, Hannah’s Rainbow: Every Color Beautiful, now available for only $2.99 on Amazon: Hannah’s Rainbow: Every Color Beautiful

You Don’t Know What Goes on Behind Closed Doors – Raising a Child with Autism

Many of you won’t know what it’s like, but there are many of you out there who understand what it entails to raise a child with autism or any sort of special need.  For me, it’s the most challenging part of my life that I face every day.  My oldest son just turned seven years old, and he was diagnosed with moderate-severe autism just before the age of three.

The first thing we noticed was a speech delay.  By age two, he was hardly speaking, but he was a happy kid.  We started speech therapy and got him in Help Me Grow.  From there, he began preschool in the public school system in a 50:50 peer model:special needs program.  He was on an IEP and was receiving services at school: speech, occupational, and physical therapy.  We were also taking him to private therapies.

We tried one year of preschool at an ABA-based (applied behavioral analysis) school, but it wasn’t the right fit for him.  Unfortunately, that was when we started seeing a big decline in his learning.  He was actually regressing.  Things he’d known for the last couple of years, like his ABCs and numbers, were no longer of interest to him, or he simply lost the ability to recognize them.

We returned to the public school system for kindergarten and had a much better experience.  He’s in the intensive needs classroom with just a few other boys, a teacher, and two aides.  In first grade, he continues to be in the same setting, luckily with the same teacher and aides.

But these are all facts.  Facts are easy to share.  What’s hard is the emotional journey that we travel as a family every day, knowing that this is lifelong.  This isn’t something that will just go away like a cold or the flu.

luke_toothless_smileThere are a few well-meaning people who tell me, “You never know, he might grow out of it.”  While this may be possible, as there are cases where autistic children suddenly make huge progress at later ages, the hard truth is that most don’t.  I’m not being a pessimist here, but rather a realist.

If I’m being frank, progress hasn’t been what I had hoped for when we first began this journey, but I’ve learned to celebrate every tiny victory.  My son loves swimming, for example, and he has shown remarkable improvement in lessons lately.  He has begun to swim on his own, which is huge.

But there is the admission that every parent is afraid to make to themselves: their child isn’t progressing like their peers.  It’s hard, really hard, to see your child struggling where other children seem to have it so easy.  When the child’s younger siblings bypass them in speaking, writing, drawing, reading, and so on, the gap continues to widen as time passes.

There are days when we barely seem to be keeping our heads above the water.  Usually autistic children have other diagnoses, and such is the case for my son.  Earlier this year, it was confirmed that he also has ADHD.  So, he has sensory meltdowns caused by autism and hyperactivity as well.  Trying to find a medication to help with the ADHD hasn’t been easy, for the side effects are often unpredictable in autistic kids.  He’s had more meltdowns when on stimulants, making the lessening of the hyperactivity not worth it.  So, here’s the question: Do I want to deal with a kid who does impulsive things, like unrolling a whole roll of paper towels or opening a jar of applesauce and spreading it all over the floor, or do I want to manage a kid who is melting down every fifteen minutes and trying to find a way to make him calm?

To others on the outside, I may seem to “have it all together.”  Whatever that means.  Let me assure you that this is an illusion.  I don’t know how I manage to keep my house as clean as I do, take care of two other kids, run errands, cook dinner, etc.

There are many days when my patience is at an end and I have just had enough.  I cry in my closet, angry that I can’t be a better mother or frustrated that MY kid has to suffer where others don’t.  I want to rant and rail at God, that it’s just not fair!  Why did You think I could do this?  I feel like the least equipped mother in the world sometimes, especially when I know that punishing an autistic/ADHD child for behaviors that he cannot help is not going to help anyone.

Some people tell me that I let him get away with things I shouldn’t.  Some tell me that he knows better, that he’s testing me.  There are times I believe this, and while there are cases when this thinking can be correct, it often isn’t.  Trying to discern when it is and when it’s not correct isn’t always easy.

For example, let me be clear that a sensory-induced meltdown is not a tantrum.  They may both result in the child crying, screaming, kicking, and flailing around on the floor, but a tantrum is the result of a kid not getting something they want.  A meltdown is caused by sensory-overload (like loud noises, bright lights, uncomfortable fabric, certain food textures, odd smells, etc.), and it may be that we don’t even know the cause!  We’ve all put on a scratchy sweater that we just had to take off.  We’ve all felt our heads spin from being too tired when walking around in an over-crowded store.  Imagine feeling overwhelmed ALL THE TIME.  This is an autistic person’s reality.  Then imagine someone punishing you for freaking out over feeling overwhelmed.

What I can tell you is that in the midst of wondering what good can come from of this, I have found that I am a more compassionate person, a more aware person, because my child has autism.  I understand that everyone deals with something at some time during their lives, whether it be depression or loss of the ability to walk.  Everyone is fighting some sort of battle, and it’s often behind closed doors.  Start talking to anyone, and you soon discover that person has a loved one who’s dying from cancer, that they’re in financial ruin, that they’re going through a messy divorce, or that their grown child has just been drafted overseas.

I also have come to believe that having a support system is crucial to going on this journey.  There are the teachers and therapists who work with my son who have been a godsend, but there are also people in my life who help me get through every day.  It’s often other special needs parents who “get it.”  Sometimes, we just want to commiserate with someone who understands.  We’re not looking for advice or the latest research article on special diets, genes that have just been discovered, or on whether or not to vaccinate.  We’re not looking for someone to come along and give us all the answers.  We just want to say “This sucks right now.”  We need to cry or rant or just be in silence.  I had another mom agree with me once and say “This is our reality, cleaning up poop.”  Yes, that was true, and it was reassuring to hear it from someone who understood.

And sometimes we need to remember to be thankful.  There are victories.  The small things DO matter.  At the end of the day, this child is still mine, and I love him.  No diagnosis can change that.

Like what you’ve read?  Want to read more of my stuff?  Please follow this blog!

Also, check out my novel, Hannah’s Rainbow: Every Color Beautiful, now available for only $2.99 on Amazon: Hannah’s Rainbow: Every Color Beautiful