Sometimes Autism whispers, sometimes it speaks, and sometimes it screams! {A snapshot of our life with Autism}

{“Hope knows that if great trials are avoided great deeds remain undone and the possibility of growth into greatness of soul is aborted.”  Brennan Manning, Abba's Child
 Post dedicated to a man whose truth has helped me walk this road out, thank you Mr. Manning! }

  April is Autism Awareness Month so in light of my 'yesterday' I thought I'd share another quick snapshot of the behind the scenes life of a family walking it out...

First of all a few FACTS:

Did you know ...

• Autism now affects 1 in 88 children and 1 in 54 boys
• Autism prevalence figures are growing
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs a family $60,000 a year on average
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• Boys are nearly five times more likely than girls to have autism
• There is no medical detection or cure for autism

I spent this morning crying .. over several things but mostly over what Autism does to a family. If you do not have children with Spectrum disorders/symptoms/signs it is probably similar to hearing about how an alien on another planet lives. It will be insane to you, you will maybe think things like "Well, my kid wouldn't be permitted to do that Autism or no Autism", or it can't be that bad...(and my children are High-Functioning, can't even imagine if they were full blown Autistic..my heart truly goes out to those families...)

Here is a random jumbling of things from my 'yesterday'...

I home school, and  all of my children have at least one symptom of Spectrum Disorder (some have way more than others), which makes an interesting time.  Levi, my only boy, whom I would 'catch a grenade for' (yeah, I just said that), is my full blown Aspie. 

Side note/more facts 1st...Asperger Syndrome =  22 Main Asperger's Symptoms, highlighted are some of the ones that really fit him to a 'T' :

Loneliness, manifested in at least two of the following 4 symptoms:
- Problems with the establishing close friendship;
- Avoids big noisy companies;
- Has no interest in acquiring friends;
- Often prefers to be alone
Impaired social interaction, manifested in at least one of the following 5 symptoms:
- Refers to others only with his own needs;
- Awkward social relationships;
- One-sided relationship with peers;
- Difficulty in recognizing the feelings of others;
- Detachment from the feelings of other people
Impaired non-verbal communication, manifested in at least one of the following 7 signs:
- Limited facial expressions;
- Not able to read emotions in facial expressions of others;
- Not able to transmit information through the eyes;
- Does not look at others;
- Does not use hands to express himself;
- Gestures are large and clumsy;
- Comes too close to others while speaking
Poor speech, appearing in at least two of the following 6 symptoms:
- Violations of intonation;
- Talks too much;
- Says too little;
- Inability to engage in conversation;
- Idiosyncratic use of words;
- Repetitive speech

Sometimes Aspies are super-intelligent/gifted and there are some crossover signs that apply to both. Levi fits this. Some of his quirkiness is from his being gifted some from his autism. Referred to as the 'grey area' because it's hard to define them...
Inordinate ANGER/Violent tempers are another sign autistic children may exhibit! Good times!

Anyways back to my day, being a home school Mom I have not only a day full of 'normal household' things to accomplish I also am 90% in charge of seeing that the munchkins get an education. So, these are the kind of things that happen on a regular basis in my home, these are from yesterday :

~Give Levi a list of items to accomplish for the day. Must be incredibly specific. Minute details or he won't 'get it' or he will do the very minimum required to get by so he can right back to 'interesting stuff' like designing ten thousand Lego's on Lego Digital Designer.  *Clean guest bathroom = insignificant vs *Lego Batman, Lego Lord of the Rings, Lego Duck Dynasty = INCREDIBLY important!!
~Three days this week Levi refused to sit down and do his math with me, refused you say..how can this be? Can't you just take away a privilege or spank him or _______ fill in the blank with what you think would work.  Nope, Levi is so stubborn that it has very little affect on him..any kind of consequence. He would rather go with out TV and Music and get his way than to do his math when he is not 'ready to do it'. I have other children and a husband, I can't just sit and 'force' him to do school. There aren't enough hours in the day.. And did I mention violence? Pure scary ot of proportion meltdowns and anger?...How do you tell the difference between blatant defiance and autism Kim? Isn't he just being a brat? MAYBE, but when someone gives me a chart that differentiates it all I'm all over it!! Otherwise it's a day by day, situation by situation, trying to seek wisdom kinda deal. And boy do I fail miserably at figuring it all out!
~Kaitlyn and Chas were going to make dinner yesterday.. Levi's 1st meltdown at the injustice of the world came when he was not allowed to go with them to the grocery store. (They were taking Bella this time). 2nd meltdown came when he realized that I got them to get him GF Pizza for dinner because what they were cooking was not GF & he probly would never eat it..In my mind I am being kind, to him he has just been grossly mistreated because HE HATES PIZZA and everyone else gets something good.  What? since when do you hate Pizza?...

*Another side note, Autistic children usually eat a very very limited diet. Here is the list of what Levi eats at this moment (subject to change on a dime as you see above) :
GF bread + apples + apple sauce + white rice (if it is from a Chinese restaurant ONLY) + GF pancakes + sometimes GF pasta +  NON GF bread-sticks when he is allowed + biscuits (from out, when he is allowed) + French fries + tater tots/hash-browns + pistachios + straw berries if that's all-we-have + soda if he can get his hands on it + smoothies with everything I can possibly hide in them about 5 times a week + potato chips + ANY sweets pretty much + CANDY (if he can get his hands on it)  As you can see, MOSTLY white stuff, carbs, junk.. IMAGINE planning your families meals around all these amazing choices :)

Back to last night..after realizing he wasn't getting white rice from out he flipped out. He picked up my re-bounder trampoline and threw it across my bedroom, he began to physically try and hurt me, all the while speaking rage and violence into my life.. "I hate you, I'm gonna kill you, I'm gonna punch your belly (I'm pregnant), you're an idiot, you're not fair, you hate me, I'm gonna get a gun and shoot you, I hate Kaitlyn, I hate Chas (sorry Chas if  you're reading this, he doesn't really hate any of us..this is how Autism SCREAMS!)" (Sending my husband almost nightly texts begging for prayers is a normal part of my routine...Breaks my heart that I add that to Ray's already full plate...) So, I physically had to hold him for maybe fifteen minutes, while all 95 pounds of him wrestled to get away.. ( BTW I have had to hold down my kids about 50 times, sometimes for over 2 hours when they are in these fits of rage) I had to give him a quadruple dose of melatonin to get him to settle even a tiny bit..  Chas was very kindly offering to help me with him but I know that would have only enraged him further at the moment so I did what I do and bore the brunt of his rage until it passed...  (I am no martyr btw, nor trying to whine or complain..just trying to illuminate what a typical family with Autism may be walking out...)

He eventually settled and was content to eat some 'plain buttered pasta' and join us for our family movie.  When the movie froze I decided to go ahead and put the girls to bed so they wouldn't drive Kaitlyn and Chas nuts.  Levi however was in my room within 5 minutes letting me know his sister had abandoned him
 and he was broken hearted and scared to death. Another NEW thing for him is 'losing his big sissy'. They have always had a love/hate relationship in a way because they are so similar and him being autistic makes it very very hard to deal with many times. Sometimes she is the best thing for him, sometimes she just has to get away from him because they butt heads and he will-not-listen to her.  Again, an autistic child does NOT function like the average child.  Levi has MAJOR fear issues & he has major "I can only think about things from my needs perspective". His sister's new relationship is pretty much irrelevant to him. If it's not benefiting him he is unhappy. Now, let them take him out alone and spend quality time just doing what he enjoys--game on, super happy Chas is in your life kinda attitude. Kaitlyn's age makes her more like another parent at times and just as he gets very jealous of my time away from home, he gets very jealous of Kate's...
~We have JUST begun to try and implement bedtime routines that are quasi-normal again. After 15 moves in 2 years and 20 in 5or so he is a wee bit unsure of where he will wake up and  autistic children DO NOT require the same amount of sleep as the average kiddo.  I don't have the luxury of an 8-8 schedule where the kids are tucked neatly in bed and I am off to  a 'me time/free time wonderland' ESPECIALLY with my husband being gone over 1/2 the year at bedtimes. This means 5-7 nights in a row I am here trying to deal with frightened kids and autistic or spectrum ones at that. There is no quick bedtime routine... Sometimes I spend 4 hours, YES, 4 hours of my night attempting to get them all settled and asleep.. Many times I give up in sheer exhaustion...  So, bedtimes are a trial but I am determined to get them past the fears and into their own rooms sooner than later...
~So last night, at 11:30pm I finally had the girls to sleep and went to be with Levi on the couch (who had come into my room no less than 4 times to get me) and who had spoken evil words to his sister in the mean-time over her choice (which is a normal choice) to not stay downstairs with him. We attempted to have a serious talk about how it is NORMAL for his sister to be growing apart from us. That sooner than later she will probly' be gone for good.  DOES NOT COMPUTE, sorry he is NOT a fan, he is NOT getting it, he DOES NOT care, he will 'never leave' his family and just doesn't understand WHY his sister would kinda deal..  

AHHHHHHHHHHHH & ughhhhhh, breaks my heart that typical 'normal' family things are NOT the norm here. I wish sometimes for a 'normal' family'..where we all sat down together and ate one meal, where the smell of certain foods didn't send my son running to puke & hide out in my room with his food, where you assigned school and they just did it, where you tucked them in bed and read a story or two, prayed and walked out to spend several hours alone or with your husband or grown children, where HATE, anger, violence wasn't your 'NORMAL', where it wasn't a struggle to go to church each week, where it was easy to hang out with others 'just because' and know that your night wouldn't be interrupted because of a food choice, or someone saying the 'wrong thing', where you picked out an outfit and it didn't 'feel weird' or itch or squeeze 'my toes too much', where loud noises didn't send us into a full blown panic or meltdown.. (this is not just Levi, like I said he has full blown Autism but all my kiddos have sensory issues...) Where my week didn't consist of one or 15 meltdowns of my own, sometimes in front of kids, mostly when alone as I worry over them and regret my actions or lack there of, or hate that I can't get them 'well/healed'... They don't enjoy having these issues, Levi ALWAYS comes back after and is sad for what happened as is Bella.. They don't enjoy not being able to do 'all the normal things'...and it tears me apart inside sometimes..I struggle with being a good wife and mom because everyday is an unknown and I just want to live my life well and love God and my family and others well...  I could go on and on. But I will spare you that..   

(at this very moment as I am typing a fight erupts over the fact that Levi stopped a show before the theme song had finished playing. Isabella immediately went into one of her meltdowns. Picked up a guitar & wanted to slam it over his head. She is now in my bathroom screaming about how much I hate her and she hates me, she hates everyone, she is freaking out, now out and standing next to me balling up her fists and threatening me... All because 'the theme song didn't play through'---these are the quirky little things that literally send my kids into a fit of rage..can you imagine???..two minutes later, she is fine..wow, good times!)

ON the POSITIVE side:

Having a not so normal family has helped me to realize just how important it is to not take life for granted, to be incredibly grateful for the break troughs--"What, you WANT to sit with your sister and watch a show and NOT be alone?" HUGE!, to appreciate the powerful gifts God has put into these kiddos and how their relationship with God is tested and refined all the more because things 'don't just come easily' and EVERYTHING is a big deal.  Did you know when Kaitlyn was much younger she was hand picked by the Director at the Florida Ballet to be the "Up & coming dancer to watch out for."  Who would've known this painfully shy girl, who couldn't even stand socks to be on her toes because of the line, could now wear tights and kick butt at dance even tho she had just started taking dance lessons 2 years prior & would go on to get solos and dance in front of her city at the Florida Theater??? ... AND  then a few years later aiming for being a part of the company there one day she would choose to quit after agonizing over the fact that the morals (sin) of this Dance Studio did not match up with hers (Gods). She gave up a pretty huge thing because she wanted to live purely before God.  To me the victories like this are what make it all worth walking out such craziness with them when they are younger.  My prayer is for my Levi, who is a freakishly talented (from God) artist, that one day he will be able to move past his anger and uncertainties and fears and blow people's minds with his ability to capture things on paper...or computer... or whatever!  He is truly one of the sweetest most sensitive boys everrrrr and when those qualities shine I am in awe of him. I KNOW God can use him mightily... Same for each of my children.  The struggles are what have made me into who I am and I know if I had had the easy way out with 'compliant, super obedient, gentle most of the time kiddos' I would never have had to deal with a TON of junk that was stored up in my nasty angry heart.. They refine me as nothing else does and cause me to dig deeper and beg more of God than I ever would have if life was 'cake'. I do get truly depressed at times over this.. But as they reveal my own weaknesses to me and make me desperate for the HOPE of God and His strength when I would have long ago given up I know that I must go forward !! ... Unless you are the Momma of an autistic/spectrum family I do not expect you to even remotely grasp what our life is like behind closed doors and once in a while in the public eye...  I am jealous of you (with the sorta normal lives!!!) BUT I know that I am 'right here where I am supposed to be' because God saw fit to make me the wife and momma of this family. I am blessed beyond measure that my family puts up with me. I am blessed beyond measure that God has trusted me with a whole house of 'special power' children..they teach me and grow me in just-the-ways-I-need...  I may never really grasp or understand the 'why' of it all but I know that the struggles of today are nothing compared to what the reward will one day be....
  
(and as I end this post Levi is attempting to choke his sister (over an injustice) and she is now having to ignore him because he is going into another meltdown and she is attempting to control her own anger this time...all in a days work... and I grew up with 3 older brothers, I know about sibling rivalry but this is rivalry on acid!!! Scary junk goes down over here...oh and he had to have more GF bread and NO FRUIT because the fruit is not 'new enough' and he can NOT eat the apples I have because they have spots on them....oh, that's my boy!!! ) 

Thank You God for trusting me with these children...forgive me for all the times I fail them and my husband and You...let me help and encourage other Mommas to stay the course and know that they are JUST the right Momma for their blessings! Even when their blessing is trying to murder them ;)   YOLO!!!!

~Special Delivery~ aka Where are we now??????

“Sometimes we need to know we’ve been delivered TO someone not just FROM something” So, I am sitting trying to think best how to give an update. (Thanks for asking by the way, don’t we all want to know someone is out there thinking of us, caring how our life is going..) So, my quote up top here is what is really resonating with me right now. We as a family have not yet been delivered from the Toxic nightmare (read earlier posts for the full story of what that means) BUT I know that one way or another ultimately we will be…whether here or Heaven..so I’m not here to give some wonderful update about our great health, a huge lawsuit win, or a great new safe home to move into.  But to know, as the quote says, that my focus can be on the Someone who delivers, rescues, redeems, has helped me to regain my perspective. I am a follower of Christ, I believe in the One True God and I have Hope because He is my Hope-giver!  HE, God, is what gives my life it’s purpose and He is what I have been delivered TO from oh so many things in the past. Often He tells us to ‘remember’, to rehearse in our mind, to recall the things He has done, to purposefully tell the ‘lies’ the Truth.

Many many many times, way more than I care to admit, I am forgetful. I don’t remember and I focus on what is in that moment stealing all my attention. Right now it is STILL the Toxic nightmare. This ‘season’ that is apparently not going to go away is constantly in the forefront of my mind. It sucks away wayyy to much of my day and it threatens to do me in…. I forget what all He has delivered me from and how much better my life is when my focus is on Him and things of eternal value.

So, before I give a quick update let me say this...mostly we are, as a family, trying to really navigate WHY we are here (on planet earth). What our purpose is, how we can best live that out & how we can move forward in a way that keeps our focus NOT on our circumstances or what we’ve been delivered from or need to be delivered from BUT on the Maker and what He considers important, valuable, needed…. Focusing on the Lover of my Soul & how I can grow in my relationship with Him & lead (with Ray) ,my family in loving Him with EVERYTHING!

 We have reached a decision that is incredibly terrifying to me as a mom but it is really the only choice we appear to have at this time. We are choosing to move home. We have been in the midst of more tests, more moves, more issues these last months and now the time has come to just call it quits….there is no more money to pour into a lawsuit that is ‘promised to take up to two more years just to really get started. It is promised to cost us more than the house is even worth to fight Ryland, it has now been promised that it will take thousands upon thousands to make the home ‘safe’ according to industry standards, for our particular family...and all that money could be spent in vain because there can be no guarantee that our ‘hypersensitive’ family won’t still get sick there.

We feel that at this time our best choice is just trust a family friend to come in and help us do a few ‘healthy’ upgrades to our A/C system and yet again just put the fate of our family back in this Ryland home (which is ultimately JUST trusting God no matter what....) Here is partly why…we are getting sick everywhere we move now. We are obviously not going to have an easy time of it anywhere at this point. As I sit here typing, I literally have a nose that is leaking like a faucet, a migraine headache, I am tired & I have the itching/scaling rash on my eyes. Many of my family’s symptoms have returned since living out of the town-home. Getting much worse since this last move from upstairs to downstairs. (I scraped an inch or more of sludge out of my A/C closet when we first moved in here...gross…an average family could probably live here and be fine..not the ‘freak show’ Reeves though!) And we are just tanked financially, Ray is working off duty jobs just to pay the bills & sometimes that is just a juggling act of who may not get paid ..yet..we are still committed to paying every bill that has resulted from this nightmare. We just can’t go into any more debt or sink another dime into trying to solve the overall problem from 'out here'..we need to be home and slowly making changes to the home as money allows.

I wake up many days and compare my crazy life to those who are in true poverty not just physical sickness/financial  bondage. I think of the statistic that every six seconds a child will die of preventable/treatable things. Those mommas would LOVE a way out, right this minute…many will not see an answer though. There is nothing that makes my family a special case. We do not deserve being rescued any more than millions of others today. Many more families than you know live in Toxic homes or have run from them and there is no ‘safe’ house waiting for them. Many have paid thousands upon thousands with no lawsuit win waiting on them to recoup all the debt. Many people today are homeless and/or jobless..there will be no rescue for them by days end either.

 I do not like the state of our dying, decaying, sick world...I do not like having a body that is becoming ever sensitive to everyday things that will always be around me. I don’t like, in fact I hate to think that my son will get sicker than he already is when we move back home… I also don’t like to think of kids with cancer, people starving, children with worms in their bellies and worms in their feet, millions being sold into slavery, kids being tied to beds and left to die because  they have ‘aged out’ of the adoption system usually because they have Downs or some other medical need that makes them 'unwanted' & even though my people (Christ-followers) profess pro-life,we are mostly pro-our life and sorta pro-birth (after the baby is here we don't really do anything to help or rescue them, right? Big finger pointing at myself first) …….there are many many MANY MANYthings I do not like…but I can’t blink and make it all ‘ok’ or GO AWAY.  There is not always a magic answer or maybe there is and we just aren't willing to see it or make it happen....I don't know.....

For us, like I said in the beginning it is more now about finding our family’s heartbeat…what spurs us on each day…we can’t keep focusing on this toxic nightmare, we can’t keep living in the ‘tempoary’..we need some kind of strong footing again, we need a purpose, a plan…we need to pour our lives into things that matter, forever things….we need to put our focus back on the Someone who we were many many times before delivered TO, He is what gives us our meaning…. I am thinking right now of the verse ‘What does the Lord require?’.. And He tells me in His word that He wants us to Walk HUMBLY, to Love MERCY & Seek JUSTICE…& I am thinking of what I learned this past week in my Mercy Triumphs Bible Study..'A person can live with pain a whole lot easier than they can live with purposelessness'....

When I think of that verse & saying.. I immediately think that if we can’t escape the decay, the dying, the people in need of rescue ALL around us..I think that we have more than enough to do to be the hands n feet of our God and that part of the ‘why’ in us going through so many battles is to SEE what it is like to wish desperately for a deliverance and wonder when one may come..

In our twenty plus years together Ray and I have walked out some pretty crazy times, we have ourselves been desperate many times. I want to be on the end of providing now. I am NOT saying we are going to be well all of a sudden and not have house issues. I am not saying my Aspie kids won’t have wayyyy more needs than I feel qualified to handle, I am not saying eating our way out of ALL this debt won’t be overwhelming. I am just saying we are in between a rock and hard place. We feel there is no other choice but to ‘go home’ AND at the same time I am saying the home will NO LONGER be our everyday all-consuming subject…

There are needs all around us, true needs, marriages falling apart, orphans needing care, kids needing to learn to read or paint or dance, hungry mouths needing to be fed….and on goes the list….WE (the Body of Christ) are supposed to be the one’s living out His redemptive story and helping Him BE the rescue plan for the world. IF that is our focus and we are pouring our lives into others then I believe we will find healing, maybe not the physical kind, maybe we will face way more sorrows as we move home, BUT I want my kids to know that we are living for Something and Someone that is much more important and worthy than what this temporary life is calling us to believe….

Sick houses, toxic houses, they are real…and many are suffering…we will more than likely now live out our lives with insane reactions and illnesses to ‘stuff’( I alone have MCS and just going to the grocery store or my friend's homes with candles burning makes me incredibly sick sometimes). Some of those reactions could be deadly. I can’t pretend to know what will happen as we move back home in a few weeks . I can’t pretend it does not freak me out..big time. I can just walk it out one day at a time…begging God for His kinda peace....one that can’t be explained….

So, that’s kinda it…no real answers..or true smoking gun to say exactly how all the mold spores got where they got (lotsa theories, lotsa possibilities but no 100% guarantee that would get us an easy win)…no BIG great ending to this story...no ‘happily ever after’ has come our way..no million dollar lawsuit and “boy did we showed Ryland” to report…

More questions than we have answers at this point, more fears for my kids as we move home ‘again’, more money spent on a home that may still make us very sick….

Sorry if this is kinda all over the place..I just wanted to get something out there in writing to everyone that’s been asking…

I know what we can use though..PRAYERS and loads of it…we are truly seeking HIS will above ALL, we are open to HIS plans and His purposes…we do not wanna make any mistakes and go even half a degree off His path….we covet your prayers..we want our lives to count & be an offering to Him for all He has done, to point others to the Hope that can only be found in Him…all of this will one day be gone, we want to store up our treasure in Heaven…we want to be found faithful as spouses to one another, as parents to these kids and hopefully more and  to be faithful to ‘whatever’ He asks us to do…..loving HIS redemption story in our life and ready for the next chapter..to Him alone be the glory!!!!