Just A Mom. Just A Kid.

Yesterday was, I think, the first time I identified as the parent of a special needs child.  It was overwhelming, shocking, mind-blowing; all those emotions I didn't feel when the word "Autism" was spoken, and a few that I did.  I couldn't help but think that this was not what I signed up for when I decided I wanted to be a mom.  These were not the struggles I thought I would face.  Then, after going through all that, I thought, "I have a child with special needs, undeniably, but I am just a mom and he is just a kid."  That was really a profound moment for me.  Now, I'm not trying to belittle the incredible difficulties that come with being a parent of a child with special needs, but sometimes that "label", Parent of a Special Needs Child (or whatever variation is used), can be isolating.  I know when I voiced it for the first time yesterday, I felt like suddenly I was not the same as other mom's.  I felt different, set apart, and it was not a good feeling.

I am just a mom.  Yes, I have a child with special needs, but does that define me as a parent?  No!  I deal with regular tantrums too.  I love my kids just the same as any other mom.  I make mistakes.  I yell, and then tearfully apologize.  I get them McDonald's.  I face many difficulties that other moms might not, but I also face many of the same.  And there are moms who face difficulties that I don't, and will probably never have to face.  Sure, I could use some special support and understanding in certain areas, but it's my firm belief that every parent needs all the support and understanding they can get.

"This is not what I signed up for when I decided to be a mom." That thought was not about the challenges I face, but about the isolation I feared.  In reality, I am not isolated.  I have amazing friends and family that have stepped up to help, to pray, and to encourage.  I am even making new friends who are so understanding and encouraging, just lovely all around.  I don't think they see me as a parent with that extra label "of a special needs child". 

On the flip side, there are certain things I seek out or do differently specifically because Oliver is a special needs child.  (Wow.  I think I really hate that label!) I might look out for toys that touch on areas that Oliver needs extra attention.  I look for books that are specific to the challenges we face.  My parenting techniques are unique because our situation is unique. So, yes, there are some things that are not really typical in our home and our family life.  Then again, isn't every family unique, facing challenges that are unique to them, and looking for answers that are specific to their own situation?  So we aren't all that different after all.

I am just a mom.  Oliver is just a kid.

My Parenting Decisions: An Installment About Being a New Mom

I'm not having another baby anytime soon.  We're not currently ready for one, financially or emotionally.  We have a lot going on with Oliver right now, and Wynter is developing into her own amazing little person, and all of it is keeping us pretty busy.  However, a few wonderful ladies I know are either pregnant or have a brand new baby, and it's got me thinking about items I would recommend to a new mom, and overall advice I'd give that might make life easier.  So, I thought I'd revive this series, beginning with some general advice for new mom's that isn't often given or thought of.

• Starting a baby registry can be very overwhelming.  There are so many different baby items that seem necessary, and then you've also got brands to worry about, and every brand claims they're the best.  In my opinion there are a few essential items with which brand should matter, aside from those brand is more a matter of opinion and preference.  Here are the things with which I believe brand does matter:
• Car seats (Some are truly safer and more reliable than others.  Do your research.)
• Breast Pumps (Check the La Leche League website for recommendations.)
• Baby Carriers (Check out Babywearing International for more information.)
• Along the same lines, following a registry guideline list might be helpful.  You can google "baby registry checklist" and find many good ones. That way you can check things off as you add them and you won't forget anything.  Add anything you really want, even if you might not really need it. Friends with kids will likely get you what you need, like diapers, wipes, clippers, onesies, etc; friends without kids are more likely to buy cute baby outfits, blankets, stuffed animals, etc.  Family and close friends are more likely to buy the more expensive items.  (This is all simply my experience.)
•  There is so much anticipation regarding the arrival of baby, the after baby arrives can be overlooked.  As a new mom, you'll be very tired and you'll need to take it easy for at least a few weeks.  You'll need people bringing you meals, or have meals in the freezer that can be quickly popped in a pot, slow cooker, or the oven.  It is more than okay to ask family and friends to help with housework, especially if you're getting behind (which is pretty likely those first few weeks to months).
• Are you planning on breastfeeding?  Know ahead of time that it can be easy for some lucky Mamas, but for many it is actually much more difficult to get going.  If you don't have people around you to answer your questions, or help you when you need it, you might turn to formula.  If you do turn to formula you might feel like a failure, or guilty for giving up on breastfeeding.  Please try to remember that whether your baby gets breastmilk or formula your baby is getting fed.
• There has been some recent negativity regarding co-sleeping, more specifically bed-sharing.  I wrote about this before so you can refer back to that post for my personal experience, or you can check out information from Dr. James McKenna.  You will find medical professionals who are adamantly against co-sleeping/bed-sharing too.  Personally, I believe it can be practiced safely.  It's really a personal decision.  Don't let anyone make you feel bad one way or the other.  Choose what works best for you and your family, and be open to changing your mind because you can't know what will end up working best until after baby is home with you.

There are many more things to think about, but for me the above were issues I hadn't thought would be all that important, and ended up being some of the most important issues for us.  Other things like where I would give birth to my kids, whether or not I wanted an epidural, what kind of diapers (cloth or disposable) we would use, either ended up being chosen for us or just weren't all that important at the time.

I think it's important to know the issues that will affect you greatest, research them, read about personal experiences or talk to family and friends about what they found to be the best for them, and then be ready to change your mind even if you think you know exactly what you want.  My decisions changed drastically from child to child, and that's okay.  It's a process, figuring out how to be a parent, and it's constantly changing.  If something isn't working, don't be afraid to try something new and figure out what does work for you and your family.  You'll be doing that all through parenthood.

This IS our normal.

I started reading a sample for a book on Autism, and it starts by saying that Autism changes everything in your life.  This was a light bulb moment for me.  People around us have asked how we are coping with this new part of our life.  They wonder if we are shocked, or overwhelmed, or scared, or sad, and I feel like that ought to be our reaction, but it's not.

Our life has been different from the beginning.  Of course with every milestone and every bit of growing up that Oliver does our lives all change, but this is normal for any family with any sort of child.  For us, Oliver is our normal.  Nothing has changed with this pre-diagnosis/impending diagnosis except for an increase in knowledge and understanding, and doors opening for assistance. 

Of course it is overwhelming, but life has been overwhelming for a long time.  The increase in amount of doctor visits, and information, it is overwhelming, but the diagnosis itself is not.  It's a relief.  It's a relief to have a focus, a reason, an abundance of information and support. I feel like this makes our story a bit different. 

Because Oliver is our normal, Wynter is full of surprises.  It's impossible to describe the first time she said, "What's that?" and pointed at an object.  She asks for information all day long, every day.  And the first time she said, "Bye Dada!", I almost cried!  I almost don't trust myself to know for sure that she is talking, but I also can't deny that I hear these phrases, and new words consistently.  I'll be even more excited as her pronunciation becomes clearer, but until then I'm content to keep listening and hearing her speech develop.

I had always promised myself that I would do my best not to compare my children, but I've learned, especially now, how impossible that is.  I still try not to compare negatively, but with two children so different from each other, how can I not compare them to some degree?  Even in the way they ask for attention, they are different.  Wynter comes to us and lifts her arms up, or climbs into our lap, or rests her head against our legs; Oliver hits, kicks, pushes, or throws things in order to get a hug or a cuddle because he doesn't understand the appropriate way to ask for attention (we're working on this).

Autism does change everything in your life, but it has been changing our life before we even knew it.  The newer changes have been good ones.  We've gained insight into Oliver we never had before.  We've learned to see things around us with a different perspective.  We're not living completely in the dark, at a loss for how to relate to Oliver.  It's still a challenge, and I do still often feel at a loss, but the challenges are not that new, and the feeling lost is not as often.  This is how Autism has changed our lives.

Can it really be?

Oliver turned 3 years old on May 15th.  It seems impossible that it's already been 3 years since his birth.

 

Look at the happiness on this little man's face!  He is so full of love, and life, and joy, that he daily fills our lives with it.

Books, books, and more books!

There are some really great books about parenting and motherhood, about being a wife, and about being a woman of God, for $5.00 or less on Amazon Kindle today.  I've read a few of them, and own most of them now (I bought 5 of these today).

I don't ever do posts like this because this blog is more about my family, and there are plenty of other sites dedicated to letting others know about these deals, but there are so many good ones today that I just have to share!  And just so you know, I get nothing from sharing these links.

1. A Mom After God's Own Heart by Elizabeth George  $1.99
2. Don't Make Me Count to Three by Ginger Plowman  $1.99
3. Feminine Appeal by Carolyn Mahaney  $3.99
4. Beyond Bath Time: Embracing Motherhood as a Sacred Role by Erin Davis  $1.99
5. Comforts from Romans: Celebrating the Gospel One Day at a Time by Elyse Fitzpatrick  $3.99
6. Disciplines of a Godly Woman by Barbara Hughes  $4.99
7. God, Marriage, and Family by Andreas J. Kostenberger  $4.61
8. Hope for the Weary Mom: Where God Meets You in Your Mess by Brooke McGlothlin and Stacy Thacker  $4.99

And I want to just highlight two others that are $6.00 each, about motherhood, written by one of my favorite authors:

Fit to Burst: Abundance, Mayhem, and the Joys of Motherhood by Rachel Jankovic
Loving the Little Years by Rachel Jankovic

I also want to remind you that if you can download a Kindle app for your iPhone, or a Kindle reader on your computer for free.  You don't have to own a Kindle to take advantage of this!

(I totally sound like a commercial, I know, but seriously, these are good books by great authors and the prices are pretty much amazing!)

Broken

I find myself on the verge of tears this morning.

The house is quiet, Wynter is napping and Oliver is out having fun with Grandma Sandy, and Grandpa James. I have some of my favorite music playing; The Civil Wars, The Lumineers, Iron & Wine, Mumford & Sons, and Imagine Dragons.  I’m slowly sipping freshly brewed coffee.  Laundry has been folded and put away.  

This moment feels peaceful, quiet, still.

And suddenly I’m hit by how much I fail at this job of mine, motherhood.  It’s staggering, the depth of my failure.  I so often lack so much, patience, forgiveness, peace, thankfulness…

Instead of speaking softly, I yell.

Instead of being full of grace, I get angry.

Instead of exhibiting patience, I am quickly irritated and often snap at my children in frustration.

And I get stubborn and rebellious.  In the midst of messy life, instead of turning to God, I stubbornly turn away.  This quiet moment, however, God stepped in and whispered to me.

“Let me help you.” He said.

And I broke.

Oh how I need Him!  I am lost without him.  So lost.

This quiet morning I’m turning back to Him, seeking His love, His grace, His strength, His forgiveness. I’m so thankful for such a patient, forgiving, loving God.

Mr. Holland's Opus

The past several days have been particularly trying with Oliver.  He seems to have regressed some in his communication skills.  Even though he has very limited speech skills, he has been able to communicate his needs and his wants increasingly well since the beginning of the year, and even before then.  He would grab my hand and take me to what he wanted, gesturing with purpose.  Now he seems aimless, as if he either doesn't know how to tell me what he wants, or he doesn't even know what it is he does want. It's frustrating to say the least, for both of us.  Along with that there seem to be more autistic like behaviors occurring, hand and finger movements in front of his face, more frequent spinning, banging his head on the floor, hitting himself when he's frustrated, shaking his head back and forth repeatedly for no apparent reason, hyper focus on the wheels of his cars and just cars in general, etc.

Last night I was discussing this with Andrew, he agrees with my observations, and he understands how frustrating it is.  Oliver walks around making this high pitched whining sound because he wants something but can't communicate it to anyone.  I admitted I'd had a little break down, a few minutes of crying because I feel so lost, and Andrew decided he wanted me to see this scene from Mr. Holland's Opus.



(Watch the video from the 1 minute marker, to the 2:17 minute marker for the exact portion Andrew wanted me to see.)

It's heartbreaking to watch this mother unable to communicate with her son, and to watch her son so obviously frustrated because he can't communicate with his mother. 

It's also heartbreaking because, aside from the fact that Oliver can hear me, and he does have a small (but increasing) vocabulary, that boy is Oliver, and that mother is me.

That scene, from the minute markers I specified, was like watching a scene from my own life.  That little boys sounds, actions, the tantrum of frustration, all of it was like watching an imitation of Oliver.  The mother's own frustrations and her meltdown over them was like seeing myself in a mirror. 

"Show me. Show me what you want. Do you want dessert?  This?"  Every day, countless times each day I am saying this to Oliver, guessing at what he's gesturing to, or looking for.

"I don't- I don't know what you want."  Every day, countless times each day I fail at deciphering his attempts at communication.

"I don't know what he wants! I don't understand what he's trying to tell me! I don't know what he wants, or what he thinks, or what he feels!"  I have fallen apart, and uttered these exact words.


She goes on to yell out of frustration that she wants to be able to talk to her son.  If you replaced that with, "I want to understand what he wants, I want to help him and I don't know how to help him!  I want him to talk to me!" then it would have been a very accurate duplication of my own moments when the frustration builds and builds and then breaks me to the point of sobbing over Oliver.

I have held Oliver, crying, like that mother held her son.

I don't break down every day, but that scene of the mother trying to understand what her son wants, and her son throwing a tantrum because he is frustrated that she doesn't understand (and that tantrum is just so much like Oliver's own) is a daily occurrence, often several times each day.

On a good note, I made some calls today, and Oliver now has appointments tomorrow morning for Occupational Therapy and Speech Therapy.  I am so excited and thankful for this development!