Autism: Secluded on an Island Where the Rules Only Make Sense to My Child

One of my friends recently watched the show "Parenthood" and privately messaged me to send sweet words of encouragement and to explain that they didn't realize what life was really like having a child with autism (the show portrays a family with a boy who is diagnosed with aspergers).  I had heard about this show and hesitated watching it because sometimes its just too hard to watch your life played out on TV.  I wondered how the writers would make autism look and didn't want to be disappointed or upset.  Would they portray autism as a burden or a blessing? Would they make the child look crazy or the parents seem overly depressed? Would they do autism justice.

Much to my chagrin, I decided to watch a few episodes.  I found that autism was actually a HUGE theme of the show Parenthood.  They successfully portray a family before and after the diagnosis of their son who has extremely high functioning aspergers (on the autism spectrum).  It seems that the writers for Parenthood either consulted an autism parent or that one of them has their own child with autism.  I say this because, they do a great job helping viewers feel the pain of not knowing what is wrong with the character with aspergers (before diagnosis), and way the parents suffer through diagnosis and the utter sadness they exhibit at of the loss of a future for their child (or the future they had envisioned at least).  Lastly, they successfully show the overwhelming chaos of life with numerous therapies and schedules!

I must admit, at first I was a little annoyed simply because the character on the show was so high functioning (in my head I'm thinking, whatever! I would be super pumped to have a child who could function that well!)  How could they, or why would they want to show a child tantruming for hours, eating non-edibles, eloping, biting themselves, repeating the same phrase 100 times,  kicking doors down, smearing poop on the walls, running naked everywhere--the list could go on and on.  Why did I want to see that anyway and who would want to watch that on TV?  Then I kept watching and found myself crying with the characters.  Yes, their son was high functioning but the struggle was evident.  Then I came to the conclusion that I still struggle with the fact that Bella is not diagnosed high functioning.  She certainly is at a much better place then she was (she is diagnosed with moderate autism).  She was recently evaluated and scored moderate in many areas (and even advanced in some academic areas--she reads over 30 site words already--smarty pants) but she scored severe in social behavior--so severe that she's at just under the social age of a two year old.  She's almost six.  That was a hard one to swallow.

Tonight a character on the show said something to the effect of "having a child with autism is like being secluded on an island where the rules don't make sense to anyone but your child".  So true.  I mean, we still cannot drive on certain streets without turning on the roads Bella is comfortable turning on....and we can only go a few places without full blown panic attacks....but that's our Bella.  It's a chaotic world for our children which spills over to us, the parents. 

So I guess I'm saying, I like it.  I like the show.  I know its a silly thing...but I find myself wanting to hug these fictional characters and tell them "it will be ok".  Then I find myself wishing they knew Jesus.  I say this almost everyday and I'm sure my friends are sick of hearing it: 

THERE IS SIMPLY NO WAY TO FIND TRUE JOY IN LIFE WHILE DEALING WITH DISABILITY APART FROM CHRIST

James 1:2-4 (my "go to" verse)
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds,  because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.


That's all.  That's what I really wanted to say.

I love my Bella so much it literally hurts sometimes.  I count her a blessing more than I could formulate the words to explain.  She makes me a better person is EVERY WAY POSSIBLE.  My heart is ugly.  She helps point me towards the cross... where I can lay down all of the ugly feelings I have and be sharpened through the struggle, the worries, the anger, the disappointment, the loneliness-- replacing it all with JESUS and HOPE. So really, if you look at it, I'm lucky.  Autism is beautiful, it's hard, but God allowed me to be Bella's mom.  I thank Him for it, because I know God is true to His word... faith tested DOES produce perseverance.  

Who will love her like I love her?

Before I knew her...
Some children need a little "extra love". Even before having two of my own, I have always gravitated towards those precious souls who "didn't fit in just right".  This desire led me to pursue my master's in special education.  While completing my degree, I found out I was pregnant with our first child.  Tears of joy filled my eyes as I showed my husband the pregnancy test.  We couldn't wait to meet this "being" that was equally mine, and equally his.  I remember one night as I laid in bed studying about all the different disabilities I would face as a teacher, I was prompted to tell God something.  It was nagging at my heart and so I shared it in a prayer, "God, I thank you for this pregnancy and for the health of the baby inside me.  I want you to know that I would be honored if you chose me to carry a child with special needs" Wait, what?! Did I mean that? I couldn't erase the thoughts from my head and it bothered me. After I prayed this prayer, I dug deep into my soul to try to grasp what I just secretly uttered.  It's almost as if God wrote these very words onto my heart, in that special way He does, to help prepare me for what was to come...fast forward 5 months, my sweet child was born premature with excess fluid around her brain....fast forward 2 more years and I heard the sentence, the one I secretly feared but clearly always knew was coming, "your daughter has autism". God was preparing my heart before Bella existed, He was showing me how to love those who are different, those that need a bit of extra love.

Parenting A Child With a Disability...
Being the parent of a child with lifelong disability is challenging.   My daughter has made many behavioral and cognitive gains but she is still far behind her age. I must think 10 steps ahead for my sweet girl to help her "make it through" daily tasks.  I sleep less, clean more poop than you can imagine, bake special foods for a special diet, organize supplements, plan ways to attend outings so that we have an escape route, must travel to places in town taking the same turns or tantrums will ensue.  I shed tears of joy and sorrow in the same moments.  I am so proud and so frustrated all at once.  I often feel alone yet so bonded with others.  I ponder heavy thoughts as I fold laundry or wash dishes....Will she grow to understand she's different?  Will she ever grasp how much I love her?  Will she marry? Will she become independent? I watch my peers have children who thrive and develop while I secretly worry who will love her like I love her... when I die?  This is the reality of special needs.  I feel honored to have been chosen as her mother because I know God created her perfectly just the way she is! I love her even on her toughest days because she is a part of me.  I cherish her tears as she tantrums because I know it's hard for her.  But you know what? You know what's harder than being the parent of a child with a disability? Having a disability! I cannot feel sorry for myself because I look into my daughters glassy blue eyes and see how hard she works every day.  From 9-5:30 she attends various school, speech, OT, and behavioral therapies.  That is not easy, especially when those therapies are meant to stretch and grow her.  She is my hero!

Love her the way I lover her....
So what does all this have to do with you reader?  This goes out to everyone, not exclusively teachers, school administrators, church workers, therapists, or even.... the random lady at the restaurant? One question I ask myself daily (as her mother) as I leave her in the loving care of others or go out with her around town, "Will this person love her today, the way I love her?" Listen, I know we all love our children more than anyone could love anything, but believe me when I tell you MY child is special.  Her existence is a miracle.  Her life was created to bring God glory.  At at all costs, I will protect her from the unforeseen in the world.  When you feel annoyed that she is screaming and it's hurting your ears, that's the least of my concern.....my heart is secretly breaking for her and I'm racking my brain thinking of ways to ease her pain.  Teachers, bless you.  You signed up for a difficult task teaching the youth of America.  I know you have a tough job with standards, parents, IEPs, (especially you special educators).  But, when you are tired....or have a "needy class"....please don't take it out on my child.  Yes, I KNOW her behaviors are tiresome and that sometimes she can be out of control, I live with her 24 hours a day.  I beg you to step into my shoes (better yet, into hers) and love her.  Remember that she works on her behaviors during and after school for hours.  Although she can't express it in words, she feels your negativity.

Love her.

This is not meant for anyone in particular.  I'm surrounded by teachers, therapists, church volunteers, friends, and family who all adore my child.  I am so thankful for these dear souls.  They give me the confidence to hand over what is most precious to me, a delicate flower....a rare gem, allowing me to trust, when everything inside me screams to doubt.  I want you to be "all in" with my child.  I want you to look forward to seeing her and even when she shows up frustrated--to keep smiling.  Your smile means so much to me and her.  It shows us that although she might give you a run for your money, you won't give up on her!

I strive to love my child, as Christ loved me.  It's the sacrificial love that 1 Corinthians 13 talks about:

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

8 Love never fails...

Autism & Essential Oils

People! I have some amazing news! I became a hippie:) Insert peace sign. Bust out the pachouli oil and lets have a toast.

Just kidding, well sorta. 

With the diagnosis of autism becoming a part of our lives three years ago my research led me to the benefits of treating autism from the inside out.  Changing us from eating cheez-its and sour patch kids to a gluten, casein, soy, peanut, banana free diet and buying organic meats and veggies.  Before autism I was happy as pig in a peach orchard to spend my days eating Taco Bell all day long.

Well, this leads me to the day I truly became a hippie last month.  I ordered Essential Oils through Young Living. Yes, you have heard of them.  You probably started running when a weird oil lady (who smelled like pachouli) started telling you that "you can dab a bit on the bottom of your foot" and you will solve world peace. I'll be the first to tell you I was and always have been VERY skeptical of easy fixes in life.  Either way, I was contacted a few times by various friends who I trusted and cared for who had shared some essential oil testimonials on the benefits of TREATING AUTISM BEHAVIORS with the oils.  I was given some oils to try out, liked them then bought some of my own.... then I became a peace loving hippie.

THOUGHTS ON ESSENTIAL OILS AND AUTISM

1. We started on two oils: PEACE and CALMING (just like it says), and VETIVER (focus/anti-anxiety): We noticed a reduction in anxiety and loud outbursts.  She has received accolades from her speech therapy and behavioral therapy workers already as they are noticing a trend of better behaviors.  I didn't even tell speech we had tried to oils because I wanted an authentic response!  I then added LAVENDER (calming)  and VALOR (anti anxiety)

2. I immediately ordered a "Premium Starter Kit" from Young Living because there were so many other oils I wanted to try (and with this kit you get 11 oils in the every day oil collection and a diffuser for $150).  I realized if I were to buy each oil alone it would be much more expensive and PEACE/CALMING, LAVENDER, VALOR are all in this kit.

3. Oh and I use the oils on my baby to help build immunity (THIEVES oil) as it is gentle enough to put on her skin.  I also us LAVENDER for calming/allergies, and I've used PEPPERMINT to help her with congestion.  Bella recently came down with a fever of 105 for three days. I used many oils to help her and also doused my 6 month old with THIEVES to be sure she didn't get it...and she didn't!

Here are the oils in the kit and what they do:

Just wanted to share something I am excited about.  I won't try to sell you on this, I just had to share.  It's something that I was super skeptical about and was proven wrong.  I am excited to continue testing these oils and sharing our successes:) You can now smell me from a mile away!

Interested?  Message me!  I hold online meetings to explain them for my friends from afar, or can meet face to face and give you samples to try.  I'm all about trying to see if things work!

Want to order? Here's the website to do so: ORDER HERE

*The PREMIUM STARTER KIT is the kit to buy if you want to be a wholesale member (like SAMS CLUB)- 24% discounts!

Don't want to order? That's ok, you must not like hippies.

**CONTACT ME WITH QUESTIONS