Current Situation - Changes are Hard.

This year I believe God has me focusing on the word: Progress. 

I just have peace that where we are right now in the world of parenting my little one with autism - we will not be at come Jan. 2018. "Peace that transcends all understanding." 

I have to think like that or I will lose my witness. 

In the library. 

Where I took said kid and vow to not try again until Jan. 2018. 

Or until the books are due. 

Still deciding. 

 

But this year, instead of whining I am going to educate myself. 

John and I are going to go to support groups in town. So look out surrounding areas!! I already have it on my printed out calendar- IKNOWRIGHT!?!?

I'm reading so I can learn about what is happening in my children's minds. And because books are still my best friends at times.

I'm not expecting the world to give me things, but only trusting in the Lord. (Okay that is hard, I might not meet that goal everyday...)

 

In reading, Temple Talks about Autism and Sensory Issues by Temple Grandin, I learned a snippet about the autistic brain, which happens to be a title of another book of her's that I am considering reading too. By the way, I found the Temple Talks book to be very insightful and helpful! 

 

Here's the snippet that has practically made me a neurologist-- that's a joke-- I am paraphrasing here-

Since children on the spectrum frequently have larger fear centers in the brain (Scientific fact), changes in their routine to these sweeties can be as frightening as the most terrifying thing we can think of. 

 

Think snakes in a toilet of mayo! 

 

Irate special needs parent rant following in 5, 4, 3, 2, 1: 

KISD. Please do not switch your bus drivers around for your Special Ed children. Love, Parents of Special Needs Kiddos. 

 

Lord, help Annie and her bus friends today. 

I was tempted to fb post this and realized I just need to blog about it. I don't know. Therapy for me I guess. And blogging is the way I show myself that God is in charge. 

 

It seems like special needs parents have a battlefield of conflicting thoughts to wake up to daily. I am conflicted everyday with when to gently push and when to comfort in terms of changes, because we all have to face change in our lives. 

 

Do I just say, "No more bus!" And then drive her to school and completely disembowel our homeschool window of education? While possibly teaching both my special learner and her sister- mommy swoops in and handles it! It would help Annie right now. 

But what would the life lesson be in this? 

She can endure the change of having new drivers, meeting new faces and we can help her. In fact, that is our job. 

And thankfully after a year of discovery (and whining) I have a team of therapists and teachers to help me find social stories that might help with these changes. And I have a husband is the best and holds it down. "P.O.P. I love yeh mama." (Only 1 person will get this)

 

"Start them as you intend them to finish."- Ergo, help them to help themselves.

 

This is my hardest challenge to date. 

 

I wake up, say goodbye to JNOFB in the early am and continue reading a book on special needs, autism, sensory processing and then the next day alternate with homeschooling books. 

 

Anyone else suffer from distorted thoughts? This is my life's battle and I take comfort that God has already, "overcome the world." (John 16:33). 

But that doesn't mean I don't still succumb to the dangerous thought buffet.

Everyday I put way too much on my mental plate. 

Why? Why do I continue to go through the Golden Coral line of brain food serving myself plates of "Do this today and for years to come everything will be great!!!" 

"Organize that laundry room and life will change instantly for everyone in the family!!!" 

 "Today's the day you're teaching Leelah how to do sutures on a banana like you saw that person on pinterest do so she will become a vet and fulfill her life's dreams and God's plans FOR CERTAIN! And she'll have so much fun and think back on her days filled with awesome memories and not her screaming sister who rips up her beloved things!!" 

"YOU CAN DO EVERYTHING!!!!!!!!! PUT IT ON YOUR MENTAL TRAY AND EAT/DO IT TODAY!" 

 

Then at night the realization and indigestion of my shortcomings gurgles up. My mind stomach turns against me because I couldn't eat everything and I have heartburn from trying to do too many life changing things. All good things. But not the right things. Silly Rabbit!

Sometimes I just Google my way to better parenting: 

"Christian parenting Autism books." 

Nope. Just random verses. Random people. Or great resources, with secular focus which is needed, but not fulfilling.

"Kids with autism books to help siblings"

Nope. But I do get weird crap with huge paragraphs for kids that screams: A scientist/doctor with zero personality wrote this and asked his quasi talented artistic acquaintance to illustrate it. 

 

Maybe I am the one with problems that searches for these books anyway, but there should be these things!!! I know it! 

And I know doctors can have personalities. Prescribe yourself a chill pill.

It all comes back to His truth anyway. It always does. I try to do my best and remember when I have stumbled these truths from His Word:

"Therefore there is now no condemnation for those who are in Christ Jesus." (Romans 8:1) 

 

source: http://dailytimewithgod.com/?m=20150123

"Those"= moms/frazzled people that don't know their head from a handbasket most days. 

 

And I have to remember that God has made me whole already. 

The wholeness will not be attained or taken hold of when either of my girls graduate, when we take a trip to the grocery store sans meltdowns, or when I become the first human cyborg hybrid with laser vision. He has made me a "new creation." Right now.

source: http://www.lovethispic.com/image/34859/a-new-creation

 

Too Many Feelings Bomb

I have so many feelings right now about things I have to blog or I'll burst. I'm way past caring who/if anyone reads these.

And to tie in to the last posts-
Homeschooling-
We are on our 8th week of the Nottingham Nichols School of Learning and loving it! Yesterday I had L use her iPod (We made her save up for it- I don't know what I need to rationalize the purchasing of it. I'm still on a, "Gameboys are expensive!!" mentality level.) to create a news report on the beginnings of the Yamato Dynasty in early Japan. Story of the World  breezing by guys- not trying to be all smart-pretentious like I'm making her learn about ancient dynasties or no supper!!!
(Sidenote: if anyone is looking for a suburban mom that dabbles in funny/haranguing life escapades that would love to venture to Japan- sign me up!! I've always wanted to go. Seeing the Grudge didn't hold me back!!)
But back to my brilliance of coming up with that report idea:
I blacked out. I don't know how that happened. It probably was a collaboration of guardian angels/Holy Spirit/L my student going, "I should make a news report about something!"

Pellets- hormone therapy.
I think I googled myself out of continuing with these. I don't like to quit anything, but I also don't like side effects... Moving on. Have I mentioned how hard it is on your body hormonally to have a hysterectomy at 26? I am looking forward to seeing a naturopath soon. I am so tired of doing the synthetic hormones for life approach. I know God is on His throne in this! The huzzy and I are working hard at making changes. Because we are old now and our bodies have decided to just be jerks.

I did my own hair highlights and no one noticed. I'm now calling them my, "ninja highlights." Subtly beautiful. Just go with it.

I'm still taking the response, "No." to a whole new level when it comes to new commitments. I'm all Meghan Trainor right now, and I kinda like it. But it also makes socializing real hard. I just need so much margin mentally and physically in my schedule these days. I do miss my friends.

But the real life pickle is in our precious and spicy little one.
Thankfully she was granted access in the PPCD- Preschool Program for Children with Disabilities.
This should be huge for her. It's preschool beginning at age 3. Now, I can tell right there judgment might commence.
"They're so young. Do children really need preschool at that age? They're only 3."
Yes, I completely get that and thought that before I had a child with autism spectrum disorder/sensory issues/temperament issues.
These kiddos need/crave/kill for routine. It has to be everyday to create new brain pathways to help them eventually find their place in the school setting/social settings.

At this point, I am thinking we will take the homeschool path with her after we give PPCD and possibly Kindergarten a try.

It is so hard.

I love her so much.

Ergo it is so hard.

3.5 hours of testing by 6-7 professionals in the school system/therapy world and they come back with "non-categorical-- autism." Meaning, at the age of 6 they will revisit her and see if that label has changed. This is where they put the, "I don't knows" in PPCD. I felt like we went through all the trials in Neverending Story- complete with these:

source

I am SO THANKFUL they were able to see past her beautiful strengths, her disarmingly cute, her beautiful blue-green eyes and saw that she struggles to self regulate. She has to work 1,000,000 times harder than typical children and it is beyond for her body's systems.

If people only knew her story. And that is just it. I want to level the playing field for her -- "She's acting out because she has had too much sensory things or not enough! Please be her friend!"
or
"You don't understand her backstory! You don't know how hard she had to fight in the womb! Just know she's doing her best!"
or
"Please stop asking if she has autism!!! Just love her the way she is and accept it and move on to help her!" -- that last one was for me personally and the powers that be cornering me in front of all the other parents at the door of her preschool to ask why we are putting her in PPCD.

I just want people to stop treating us differently while at the same time to treat us differently. It is just so hard.

It has been a year since we received the ASD (Autism Spectrum Diagnosis). October 8, 2015. I have felt like a zombie ever since honestly. Slowly coming back.

On the one hand I'm a cashew- so very thankful for the diagnosis and on the other side I'm a pistachio- oh my gosh she is having so much trouble and some days she doesn't and I don't know anything.
Mixed nuts completely.

I drop my little one off to a day out program and I see the other moms. I used to be them. Talking about typical things. I used to resent their perceived life ease in their active wear.
Their playdates where typical things happen.
Their Yukons. (Not entirely resent those, because I'm mighty proud of our POP- Paid Off Pilot!)
Their lunch plans.
How they can just run errands as they please.
How their kids don't fight looking at them in the eyes or holding their hands to cross the street.
They don't have to continually talk about, "First, then" schedules to prepare their child for EVERYTHING and God help you if you skip something.
They aren't telling their child- "PLEASE STOP YELLING!" as they leave the parking lot when they are taking a different route home because their child has completely memorized all routes everywhere and will mentally break if there is a train and a detour is needed.
Or maybe they are?

Why won't anyone call me to ask how we are drowning?

BUT I am NOT RESENTFUL GIRL anymore! I took/take that to God. Only He gets it truly and thinks I can do this. I can love this. I DO LOVE HER SO MUCH. I KNOW this is not her story. This is HIS story. She is a Phoenix! She will rise from the adoptive trauma ashes and she will- she is- doing BIG things in this world by just living everyday, trying so hard! Genesis 50:20 for life baby!

I cast my cares on the One who can take them and won't let me fail!

Cast all your anxiety on him because he cares for you.- 1 Peter 5:7

For He will give His angels charge concerning you, To guard you in all your ways. 12They will bear you up in their hands, That you do not strike your foot against a stone. 1-- Psalm 91:12

And I am not Resentful Girl, because that is an enemy tactic. If I am resentful, then I cannot be helpful to the other mamas out there that have children who are disregulated and have already experienced 10 full scale meltdowns just trying to get to Hobby Lobby to retain some sort of shred of normalcy for their other kids that didn't ask for this. And I know there are others out there no matter how they look in their Ray Bans.

I see my oldest. I don't care to brag, but golly gee she is a certified sibling rockstar. Sure, sometimes she just can't as we all- (I have "mommy headphone time" at about 4:00 pm each day where I watch Gilmore Girls by my dang self on the laptop with headphones)- BUT this girl "agape" loves her sister.

The other day I watched them in the backyard with raw awe at what God is doing. A 10 yr old and a 2 yr old- that alone is huge. How God has knitted us together. I just shake my head with amazement watching her deal with this little one who is so precious. Seeing how God is teaching her patience through fire. Wondering just how this is training her for loving on hurt people/animals in the future.

Since she was itty bitty she has wanted to be an exotic animal vet- translation- a lion vet. But ultimately, we want what God wants her to do. But I see it all so clearly even though nothing is clear.

Sister's been to enough therapy sessions, counseling sessions where she can lead a session through play with her unintentionally. I hate that on one side of token- because she even has to do that. The enemy throws heart daggers at me- Look what you did. (I'm referring to Satan here- Yes, I'm a Christian who believes in Spiritual Warfare as noted in the Bible). Sometimes I believe I did this. We were three. We were calm. We really moving along.

And then, the Holy Spirit, my heart, Jesus, snaps me out of it.

HELLO girlfriend. What if you had a biological child who had these struggles? Adoption or not, this is God ordained. He knew what my oldest needed in a sister. HE is giving her compassion, mercy, strength, TRUE FLIPPIN LOVE. And He is giving it to her in an abundance of meltdowns. Don't question it! Embrace it.

God did this, not me. And we were covered in prayer. We accept that, "What God has called us to- He will equip- has equipped us to handle."

Thank HIM!

Thank her!!! (Both the sister and the little one!)

You can't buy grace. If you could I'd go broke obtaining it. But God through this special girl is showering me with it daily.

I'd be remiss if I didn't mention my husband and gush on him. Johnicles, the Steadfast Boulder. I want to go there, but I have to get ready for the day ahead. I don't think it's going to be a lots-of-deodorant day, which is nice, but you never know!

Thank you for reading. And if you are praying for us. Thank you. It is beyond helpful.

Thankful for the Blessings of Autism

It's been a while and a few unpublished drafts to this blog and it's been because I've been in wallowing in the pit of despair and there's no wifi in there sure 'nough.

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. 

That I do not expect anything from you and I love you how you are right now and how I am praying for you- specifically praying that you, as a momma, would not "drop your basket" like in Ya Ya Sisterhood.
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.1:26-28

2. 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!

8. Perseverance.

"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 5:3-5

 9. 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.

Prayer Requests
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.