|Halloween this year- we went a little "batty." Perfectly fitting.|
A little over a month and a half ago (Who's counting? October 8, 2015 at approx. 3 pm), our little sweet and sour nugget, Annie, was diagnosed with Autism, or as I first called it, "Awesome-ism." It's Autism really though. It's not so much awesome, but awesomely hard. Truly.
We had this diagnosis done by a pediatric neurologist and head of the Autism Center for the Children's Learning Institute. Despite all her creds, many people (Including us) doubted this diagnosis based on the following factors:
1. She was almost 2.
2. She is a toddler.
3. She's from an adoptive background with a past that God is lovingly changing daily.
4. Did I mention she's nearly 2?
Yesterday, after her birthday last week (She's full fledged 2 now!) we went to visit the same dr. to get another conclusive test (CARS Childhood Autism Rating Scale) and yep, she's still on the spectrum, still has Autism and is still 2.
Everyone asks, "Well, how autistic is she??" or "Is she nonverbal?" basically, how bad is it? I get that most of these askers have good intentions. Because this is my child's own story and again, because God is on His throne and He determines the outcome (Thankfully!), I'm not going to give you her rating. Let's just say it's very clear: She has Autism and it should no longer be questioned. I could go to another pediatric neuro and or behavioral psychiatrist, but we have prayed and prayed and payed and payed and goodness, can we just move on and treat this and help her and get a gameplan already?
My Braveheart Horse Pep Talk Time:
It's time for me to Mom Up.
To do the mom army crawl through the slimy, muck and mire and be the mom she needs and quit the waaaahhhhh and the woes, which do zilch for her and our family. My kid's got Autism and if I want to help her then I need to process this and ask God for wisdom and soldier on. I'm finally ready to do that now.
We can get stuck in Label Land -WHEN SHE DOESN'T EVEN KNOW WHAT AUTISM IS- she is just living and being 2! Or we can pray, research, seek out friends that get it (this requires making new friends which is not my strongsuit- lots of sweating), put my blue war paint on and GET OUT THERE!!!
And another thing, I got a 9 yr old who is watching how we are going to handle this. This is prime teaching time to show her what a person does with a diagnosis that is basically a lifelong condition that is really, really hard to deal with: We PERSEVERE. "Perse-DANG-vere!"
I must stop treating her like a victim.
We can be thankful for this diagnosis (I've got a blessings of Autism list below!)! Lots of people (I've been one) have crazy illnesses that are never going to get a diagnosis! At least we have one and that will give us ammo to fight it.
I've always secretly wanted to be in the armed forces. Guess what, on July 21, 2006, I became enlisted into the Parental Forces and now, John and I get to wear the Autism Stars on our shoulders and that is a blessing.
Before I go into the blessings. Can I just break down what I've (And I've only known truly from Annie's behavior and from what I've researched for a short time) seen Autism to be? Because a lot of people (self) have zero clue.
What is Autism?
Read the expert definition. Speaking about Autism Speaks- we were handed a huge packet full of orders for therapies (Occupational, Speech, Applied Behavioral Analysis), Hearing tests, EEGs (24 hr and her's is on Dec. 23- please pre pray for this), GI follow up (all that diarrhea? yep, linked to Autism), etc. etc. In that packet one of the most helpful things was this: 100 Day Kit. Awesome resource.
My own definition: It's a brain disorder which causes the person to miss connections dealing with communication and relationships (hence ST, ABA). And it makes your kid instantly frustrated and thus, they scream all the time. It also causes major sensory issues (hence OT). The whole cause and effect thing is thrown out the window.
You could know what makes them tick one second and then immediately be confused at what is making them tick the next.
As a dear friend put it, "She's constantly in fight or flight mode." Never calm. Her brain is never regulated. Until we get lots of therapies under her belt. And this is EXHAUSTING for all parties.
Currently we can't just "run to the store." We can't just go to a structured play date. She has no fear but at the same time has fear of everything. We can't just do "justs" anymore. Everything takes planning. It's a marathon, not a sprint. Or some other inspirational quote.
From her point of view, this is how she sees life:
She's in a subway tunnel (I might mess up the terms as I live in the suburbs and have been on a subway once) and there are trains? I guess they're called (go ahead and judge I know nothing I told you!) that are going on either side of her at 70 mph (fast, okay!?) and there's a teacher about 40 ft ahead of her trying to get her attention and she has to try to focus on her and not the trains and everything else, but her brain can't.
A life example:
Yesterday before 10:30 we had at least 10 meltdowns. One complete with me getting bit for moving her somewhere she didn't want to be moved because she was going to break something. These are not normal 2 yr old meltdowns (I do have a "typical" kid- "Normal is a setting on a washer machine." so I know what a typical meltdown is). It's a nuclear meltdown to do most things with this precious girl.
And what has shocked me the most?
The friend vaccuum. At first my heart was broken. I thought people would be so understanding. But the truth was how could they when they truly do not understand themselves (me either!)? People told me they would pray and I never heard from them again. Granted it's been a month and I'm a little dramatic, but still. It hurt.
And then God shepherded my heart to realize - He was right there. And give them grace.
Phew. Grace. Okay, that works.
And after seeing a family counselor, I was told to find others like us. And I'm very thankful for that advice. Slowly but surely, God is helping me do this.
I'm so thankful for my immediate family. Who are very willing to love Annie as is. No judgement. No waiting until we get it under control (if we ever). Just bring her over and let us play. Thank you Lord. Grace.
Meanwhile in our life....
Remember my 9 yr old. She has Psoriasis and it PSUCKS. And she's 9. That is a tough age. Like the 4 yr old shots people forget to mention: 9 is the year that changes can start. So on top of the Autism, 2 yr old, Adoptive Background (through CPS), 9 yr old stuff, Psoriasis, I'm about to lose my witness as they say! Also, I lead a group at my church. Also, I'm married. Also, I need to drink water and eat and survive on Earth.
But at least I can see! And I can walk! Praise you Lord!
And honestly, with the friend thing. I'm just figuring out what I would do for a family that just received this life altering diagnosis and new way of life. I do not claim to be a good friend or a good person or a good mom. Gosh, I'm just a human. But here is what I would do now that I know firsthand what a special needs family really needs and what you can do:
I would go over to their home (because most days we can't get out due to major meltdowns and exhaustion) and I would pray with them.
I would tell them I don't care about:
- How your house looks like the apocalypse hit or you are just settling into the life of a North American at the turn of the century. "Churn down for what!?" Why are there clothes hanging everywhere? Who's that hobo on the harmonica? What's that smell? Why are there so many fruit flies? Does that kid have yellow fever? Is that a bison in your backyard? Very Oregon Trail....
- How your kid screams like they have mutant X-Men powers.
- How your face and hair looks like a conglomerate of "before" photos.
And I would give so much more grace.
I pray that once things settle down I will be able to do this and that God would give me the eyes to see who I can be this friend to. Not yet though, I'm a mess.
So those blessings..... If you are a parent of a kid on the spectrum. Would you please let me know what blessings you have found that I can add to the list?
My Blessings of Autism List:
1. For the vision to see more of God's Word brought to life and His works in new ways.
"For consider your calling, brethren, that there were not many wise according to the flesh, not many mighty, not many noble; 27but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong, 28and the base things of the world and the despised God has chosen, the things that are not, so that He may nullify the things that are..." - 1 Cor.1:26-282. For all the new celebrations for what some might see as little things. "First unprompted smile."
3. For all the new people we get to interact with: therapists, support groups, doctors, etc. How those relationships can be new friends and new opportunities to share Christ with.
4. We get more focused bonding time with our child(ren) through therapies and play.
5. We get to learn all about the brain's innerworkings. We're basically going to be neurologists and therapists now, right?
6. We can pull out that Autism card and use that thing up! "Oh, sorry I was going to do that, but Autism...." And slowly back away.... (I jest y'all.)
7. Who doesn't love underdog stories? We get front row seats!
"And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; 4and perseverance, proven character; and proven character, hope; 5and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us."- Romans 5:3-59. More chances to bestow and receive grace. Humbling, but worth it.
10. We can become more compassionate to others in need.
"My sister has Autism and I love her just how she is!" - Leelah to childcare worker.
11. A stronger marriage if prayed for and as God leads. Some would argue this point and that breaks my heart. But I'm just trusting in the Lord because it's all I can do.
12. A stronger family bond all around because of the minute by minute challenges.
13. We are walking service projects! Getting to daily be the "hands and feet of Christ." to our special needs kiddo.
14. We can teach others someday.
15. Hugs and kisses are appreciated more.
16. My favorite- while at first I only saw this diagnosis as bleak- God has changed my mind to think: this is the full life. We fully give and get to experience grace. We fully understand what compassion can look and feel like. We fully treasure little things now. We are fully invested because we are going to therapies, we are praying like mad, we are shouting out to the Lord for help and rescue by the hour, we are FULLY in this thing now. We don't get to zone out and while that is so very tiring, it is so very full.
For the right therapy/treaments and for affording (Think THOUSANDS upon THOUSANDS- this is why God has us get debt free when we did!!!!). This search is my current full time job and it is hard and daunting for this Aggie Graduate.
For God to bring friends for my kids and for me. I'm not ashamed to ask for this.
For us to remember the above blessings when it is so very hard.
For strength to live each day on the Kingdom side and not the pit side.
For me as a mom to delegate and focus and plan best.
For the upcoming EEG to determine if Annie has seizures (this is tied to Autism frequently).
For Leelah to not become a "Glass child."
For John and I to just not lose it.
Thank you. Thank God for you. Thank you God for Autism.