SJ is coming back around

SJ has been being treated for both bacterial & parasitic infections of intestines. Yes, lovely I know. But, truly most people have parasites b/c of our food processes, family pets & just nature. At least this one isn't the spreadable kind of creepy kritter. Anyhow, keys to avoiding parasites, in case you're interested is: healthy gut flora (good probiotic), keep sugars to minimum (sugar is an immune system suppressant & the more artificial it is or modified (HFCS) the less your body is able to process), assure healthy bowel patterns (if you tend to be constipated, that's the perfect environment for yeast & parasites-- our whole family takes digestive enzymes thanks to our low pancreas function & metals toxicity)

Anyhow, she's just finished her *Shazam!* treatment-- doc pulled out big guns on this one. WOW, she is talking a ton & really really active again. Her speech pathologist looked at me yesterday & said-- "yup, she's back in the game." She was chasing me with a snake this morning making the hissing sound.

It's amazing how sensitive these kiddos are. SJ had a fairly large regression from about March until end of April. She's been recovering in degrees over the month of May, with a doozey of a flu bug in there, too. She had me pretty scared, b/c she was so sickly she'd just lay around & was so unresponsive, especially in eye contact, but lack of cuddling, too. I was starting to get worried because there is a huge predisposition to developing Leukemia in kids with ASD; which I learned from a researcher who also has a child with DS & ASD. With so many systems & issues hindering their immune systems & subsequent improper immune responses, the body begins an ugly cyle of attack on itself. Anyhow, I'll save the autoimmune schpeel for another post; I need more coffee & time for that.

So glad to see my girl coming back again. Speaking of the little darlin'... check out our little beauty's unique eyes... two colors. Like Daddy's brown eyes started & Momma's genes said, "heck no!" =>



The Eyes are the window to the soul

This one beautiful soul.
She truly does have *STARS* in her eyes.
This pic doesn't even come close
to show how magnificent her eyes are--
when light catches her irises, they are
like a luminiscent blue galaxy.

ANGEL EYES, courtesy of our Bella

Happy Farm Girl

Happiness is being a FARM GIRL.
Roo was cracking me up, she likes to wear pink, asks to polish her nails, but can ride the John Deere in 2nd gear like a mini Indy racer. She told her twin brother that THIS tractor was only for Farm GIRLS.


Mom, I'm mad

I have really been fighting a bad funk lately-- you know they cyclic garbage that we all drag around with us. Most days I'm a champion or one heck of a stubborn Irish blooded Momma not willing to let things go into the regular trainwrecks or get boring (depends on which viewpoint looking from). I know all of us being really sick for the past two weeks has not aided in my non-funkafication either. I think sometimes as parents we become to clearly skilled at submerged living as a coping mechanism, when the sub surfaces to reality with all *feelings* waiting there for you, well-- the coping mechanism clearly isn't as clean & tidy as it appeared.

S-bear has recently acquired a major skill in telling me how he's feeling. He's said, "I'm so happy." the first time about 3 months ago. The look on his face & twinkle in his soft brown eyes & his accompanying bounding boy footsteps melted me from the inside out. The last couple weeks, when he's become upset & crying, he's said "Mom, I'm mad!" It's heartbreaking, because he is about the gentlest spirit in a person I've ever known. I'll tell him, "it's ok buddy... everybody gets mad sometimes." And, yes we're working through the pushing, hitting & defensive behavior that's not acceptable with anger either.

A couple days ago he got mad because I wouldn't let him go out into the rain to get his sand-impacted tractor to play with inside. He pitched a royal fit, went outside despite my verbal countdown warnings & came back in by my guiding hand, madder than a wet cat. Cake topper was that I sat him in the timeout chair & said, "when Momma says 'no' you must listen". This has been an important lesson to drill lately because of his determination to go outside alone & unintended. He is so softhearted, he just wailed & buried his head in his hands crying. "Moooommmmmmyyyyy, I'm MAD!," he'd blubber through a drippy nose & tears. Me: "I know you're mad, but you WILL listen. Momma said NO." Then he cried louder-- Daaaaaaaaaaadddddyy!" Now that's awesome, because he knew I wasn't giving in & sought out the next best comfort person. Again, another first expression-- beautiful & REAL.

Poor baby... he's killing me, thank God I have the stubborn gene courtesy of my father or I would cave. 5 minutes passed & he was quiet. I checked on him in the laundry room (the next room over) & said "You can come out now if you are ready to listen." He gave me his rooster non-approval crow & jetted into the family room. It wasn't 5 minutes later he came up to me & grabbed around my legs saying "Mommy, hug?" I picked him up, & gave him a big love squish & he said, "ok, feel better". Priceless.

Anyhow, upon reflecting on this scene today, it occured to me how significant it is that we truly FEEL our feelings & not just push them aside always. Not that we have to run around like emotional pirates, but we all need to find a place to give ourselves the respect to acknowledge how it is that we're feeling. Everyone must have a safe place to do this & I think it involves more than just acknowledging emotion, yet never letting it cross your lips or write it out. I'm reminded that this is equally important communication to our Lord. We know HE is all knowing & loves us unconditionally, but we seem to miss out that He designed us to NEED HIM. He wants to know what's on our hearts-- directly from us. Yet as mortals in this fallen garden, we seek independence from all, even our Maker. As a parent seeing S-bear so angry is hard (just as I know it is for God seeing His children suffer), yet it's relevant to our World & as parents we must nuture our children's learning even through the hard stuff.  Autism has left S-bear innocent to the societal stigma attached to bearing one's emotions. Hmmm, epiphany. Who can truly say these children were not sent to teach all?

On a sidenote-- DAMN I'M MAD!


E-Holai Sheesh Batman!

I'm astounded at the astronomical amounts of our medical/bills related to Autism alone. Upon tasking myself with putting together in a spreadsheet all these regular recurring costs for *medical treatment* the results are  ALARMING! For just vitamins, supplements & supportive monthly medical visits we are at 10% of my husband's gross income. This number does not include: acute illness costs (meds & copays), therapy, advocates/lawyers (to obtain appropriate school services), the insane amounts of money for items free of: food coloring, preservatives, pesticides, corn, wheat/gluten, dairy/casein/lactate, artificial sugars, artificial flavorings, perfumes, dyes... I mean really-- I wanted to punch out the clerk when she said, "What a bargain!" in reference to the 4 - EVERRYTHING free blueberry muffins I bought in a time crunch that were $9. Thank goodness our government acknowledges the financial hardship of raising children whom are medically fragile & disabled, by tax deductible considerations-- or wait that was my imagination.

You know how pissy I get that I must buy specially compounded acetaminophen that is free of dyes, fructose, etc? For entertainment, come shopping with me-- it's a hoot!

Just yesterday, I put sunscreen on all the kids & my micro-sensitive blondey (Roo) looked like she was in a street fight, within an hour. Poor baby had puffed red raccoon eyes, & streaks of raised red rash.  Our *safe-brand* sunscreen must have had an ingredient change. I had to resort to dye-free benedryl as the lesser of two evils. She said to me, "Mommy- my face does hurt. Yup, I want to scratch it." OMG. Seriously!?

I'm done now... the hormone surge is over. As Clarke Griswold once said, ".... Holy $hit-- where's the Tylenol (dye free & non-recalled of course)".


Recovering... the boy within

Even though I am sick now with the flu the kids had last week, I cannot help but be a bit giddy. Amongst all this sickness is healing & miracles.

Autism, an UGLY & uninvited houseguest, whom first arrived 3 years ago now as it took away my then baby boy after his vaccinations. It was abrupt & an unkind descend into a private Hell no parent wants to visit. Within 2 weeks, S-bear lost all eye contact, stopped talking, stopped responding to language & withdrew into his own inner world.

His eldest sister was showing *signs*, but not catastrophic like S-bear's regression. Bella's biggest regression had yet to take her down & would ensue only half a year later. S-bear on the other hand was a shell of the toddler he had been in such a quick timeframe. I remember those days with a sick feeling in my stomach, because of the amount of pain it caused. I have never seen my husband so devastated & left wrecked & hopeless with grief; he told me he didn't know if S-bear would ever know how much he loved him & it was killing him.

Though S-bear is extremely smart & minimally verbal (since about 3 years of age)-- he has always been somewhat in another realm since that first regression. His audio processing has always been really lacking & he is a visual reader of situations in response, rather than by hearing to & processing language. He's made gentle progress, as we've have sifted through the quicksand of symptoms Autism gives us, but I have to say WOW-- now we're getting somewhere. Since treating a chronic yeast infection of his gut, his speech has skyrocketed. I challenge the docs who think there is no gut-brain connection with this example or even friggin alcohol for crying out loud!

I have to write this stuff down, so I can clearly remember as each child is always evolving & my brain is saturated. My prayer is that I'll write this, to one day rediscover what S-bear used to be like, having forgotten how lost he once was.

Autism is layers & we are slowly peeling back pieces here & there, careful not to go too fast, because that can cause damage too. S-bear has been shedding some significant layers in the past two months. He is speaking so well, in near full sentences & addressing me by name with social intent, seeking out his partner in crime (his twin), & swiftly telling us how is feeling ("I'm mad". is the latest.) He told me this morning, "Mom, how about a field trip? swimming?" I said, "Not today honey; you've got school today. Maybe next week you can go on a field trip." He was quiet for a couple seconds, then retorted "School to see Jessica (Ms. Jessica is his teacher)." I about flipped.

Again, some will read this & say big wow-- what's the big deal? It's perspective from where this child has come from. Imagine your child is deaf & cannot lipread, now you try to give verbal directions to him/her as they remain unaffected & non-responsive-- that's where S-bear has come from. That's why I'm so excited & amazed. Not only that, but the things he is expressing now verbally is correct-- he's referring to himself as I/my rather than his name in third person. It's all in there inside his head-- he's been soaking it up & we are finally seeing who he is inside.

This is called recovery. I'm grateful & will keep working to achieve degrees of recovery for each child. People that believe it's not possible are disillusioned. Autism is much like brain injury-- recovery is possible & individual for each patient, there's just no gaurantees & it takes a lot of work. Whenever I feel so saturated & spent, I envision the rays of sunshine inside each of my children trying to shine to the outside. I will never give up at trying to reach that light and their potential, & knowing who they are, b/c no matter how exhausted I am, they are moreso... no matter how stressed I am, so are they... recovering my babies is what I am to do now.

Even if they regress again, I will savor these victories if only in moments, hours or days & will try again. If it were your child what would you do?


Rain Rain Go Away.... the activities of a SICK day

As part of a experiment I'm going to write down the activities of the course of our day with 3 kids home sick. This ought to be insightful & scary.

- Turn off alarm & wish there were time for a snooze. I'm behind schedule already!
- Get my java fix for energy... thanks to the sweet husband who makes it each day.
- Get S-bear up, Roo sleeping in due to flu - S-bear gets herbal cough support today for bad cough
- After changing him, mixing up protein milk he's settled snuggled on sofa
- Bella's turn to get up. Thankfully, no fever (everyone else has had over past 3 days).
- Called Mom while getting kids ready.
- Changed & mix up thyroid meds. Listening to her music while I pack lunch & make her breakfast.
- S-bear doesn't want to eat (big surprise, poor punkin). Bella does -- that is a surprise, maybe we'll beat the bus today.
- Roo yelling from her room. Go check on her... fever free, still sick. Change her & settle on sofa.
- Check baby... still sleeping with temp. Call Speech Therapist to switch SJ's session to S-bear.
- Get Bella cleaned up, teeth brushed, glasses on, shoes & coat, backpack & lunchbox. Bus is here-- VICTORY!
- Twins hungry, but not wanting good breakfast. So, sneak protein, hemp oil, honey & super greens powder into peanut butter sandwiched b/t 2 graham crackers. S-bear won't eat, but Roo will eat his, too.
- Mixing up kids supplement cocktail (missed Bella's- shoot!): lemon fish oil, probiotic, vit C, vit D, Cal/Mag/Zinc, B vits, digest enzymes -- get bribery items ready (2 organic jelly beans) - No, I'm not cruel... they have to take this stuff for digestive dysfunction & nutrient deficiencies.
- Twins are mega crabby... gonna be a fun one.
- Email Bella's teacher. Call twins schools.
- Check baby's temp. She said, "good morning, baby" so cute (what I say to her-- *delayed echolalia* repeating language at later time, for you non-Autism folks).
- Change & mix no-dye flavoring into baby's antibiotic-- so she doesn't spray it back in my face (1st ever ear infection)
- Homemade protein drink for baby, since no one is eating this morning
- Grab clothes from dryer, load up both machines. Doorbell-- Speech therapist is here.
- S-bear is willing to participate, so get Roo occupied with constructive project & baby gets vitacocktail.
- In & out of therapy with S-bear while therapist does reassessment. Printing data sheets for therapy.
- Reoccupying Roo & comforting baby who seems to need extra love today. =>
- Finish folding basket of laundry on floor with SJ on lap & discussing goals with speech therapist, before she leaves.
10AM(ish) I think?
- Defuse 3 sequences of fighting b/t twins with timeouts & lots of crying (where's the earplugs?)
- They want to eat, make Roo & baby fruit smoothie. Roo still doesn't want to eat... S-bear refuses the crackers he asked for.
- Baby wants to go outside & cries when she can't (this kid has some pipes!)
- More laundry folding & organizing baskets to go upstairs.
- Books for Sbear, playhouse for baby & Roo is playing with word game. They are quiet-- time to run.

- Strip twins sheet for wash. Sort adults laundry.
- S-bear & Roo fighting again, not really-- he is just extra sensitive & she's domineering as usual. Aaaaccckkk!
- Change & cuddles for baby. LOL- she found & donned a stocking cap with braids down each side & fluffy pom-poms on top, plus clean socks from my laundry basket on her hands.
- Setup Spongebob kids basketball hoop, get out an old-new parrot Fur-real toy, and the Farm Bingo (can ya tell we're looking for novel entertainment).
- I want "Chhhhhhhhhhhhhiiiiiicken!"- Ok, S-bear declares lunch early. Roo won't eat this time.
- Cleanup.
- 2 phone calls while disarming arguments (insurance co. & therapy center)
- answer 4 waiting texts.
It's 11:00AM(ish)-- and I'm done with the experiment. No time! I'm hungry, gotta pee, & need to brush my teeth (I know, so gross). Bet you're disappointed.

The sun is out though-- may I have an AMEN!


Baby steps

I think my new mantra is *baby steps*. I started this blog for a couple reasons: 1) so I can remember the specifics of this journey (good/bad/everything in between) 2) for my own mental therapy 3) to celebrate the baby steps we make along the way.

How many times have you heard- "Life is a journey, not a destination?" This is about the journey... I don't want to miss it & it's easy to do in a world of technology, agendas, & the modern day American culture we are in. Add in to that equation, 4 children with special needs & whew-- life becomes a fast forwarding loop repeated daily, when now I turn around & the children are now 6.5/4.5/4.5/2.5 years old.

No matter how my age matures, my human spirit looks for accomplishment in a bulk package. By adapting the mindset of *baby steps* I can reaffirm through our accomplishments in the minute forms they appear & embrace them, as God intended. It is our human arrogance in our sin that drives us to be independent from our creator, trying to "do all/be all"; I'm guilty of it, too. Our culture breeds this ("do all/be all"); mentality & I'm reminded of it when we are forced back into basic seclusion of a detox cycle: no computer, no phones, no television, no electricity, no car; though I dread the process monthly, this time truly is a gift & life perspective RESET.

We've been going through detox for about 5 months now with the children & it's been a intricate process, as everything with Autism is. My baby step moment for this morning is hearing my boy, though sick as a dog with a cough, say, "Mommy, Steppi (for his twin's name) wake up!?" He came to me to communicate, looked me in the eyes, addressed me by name, & said something novel AND SOCIAL! A few months ago, he didn't even call her by name, let alone share with me the thoughts he was having about her. This is my GI-NORMOUS baby step moment this am (yes- that's a word in my dictionary)! Again, thank you, GOD.

So later, when I'm overwhelmed, I'm going to repeat to myself *baby steps* & think about the next step in the moment, not the day, week, or month. I'm going to follow it with my "I am..." statement, even if it is as simple as "I am here now. I haven't given up."

Enjoy the baby steps!!


It's the little things

Tonight after putting all the kids to bed & feeling so tired I wonder how I can find the energy to read through all binders, revisit the tasks to-do list, do another couple loads of laundry, pack bags for the morning & find some time for my spouse. I'm brought to what is it that fuels my tank, which seems really empty tonight. Hmmm... what makes me want to get up & do it all again?

I think it is the hope I find in the little things. Watching my son tonight get so excited about the details of one of his animal programs, I thought-- wow, I need to take time enjoy the beauty God crafts into our day in this seemingly imperfect world, like my son does. Even when I remind myself to slow down & breathe, I often have the digital task list running in my mind's eye so much that I have trouble focusing & miss the good stuff.

The irony of this when I think about it, is the analogy of myself in that fogged/hyper-multitasked state, having a hard time keeping it all together-- is parallel to the struggles my children have in their Autistic bodies. They are easily overwhelmed by too much stimuli (me), have difficulty with transitions (me also - when dealing with multiple kids having diff. with transitions), inability to attend/focus (ummm, yup- me again), etc, etc. BUT- they have this uncanning ability, gift rather, to stop & get lost in the good details. Stopping to smell the roses if you will. That's where my so-called neurotypical mind drops off the canyon most days.

For Bella, it may be catching a glimpse of her new hat in the mirror & delighting in her reflection. S-bear's intrigue in making his animals take on human roles gets him rolling. Roo can find amazement in just figuring things out & giving a 15 minute dissertation on why when someone doesn't follow the rules they are not responsible. And SJ can giggle & get all warm & fuzzy with the feel from her favorite blanky, as she pitter pats her chunky baby feet down the hall flapping her extended arms, saying "f-why... f-why (for fly...fly, like a butterfly)".

I'm thankful for my kids successes (& that God slaps me upside the head with now & again to gain my attention) that reel me back into "OH WOW-- THAT WAS AWESOME!" Tonight it was Bella telling me, "Mom, look..." with a finger point to a scatter of cards (a first ever-- thank you Jesus!). Not only did she joint reference me by her eye gaze, but she directed me to look somewhere with a gesture. Nothing short of a miracle, when I think of it. She is nearly 6.5 & yes, most 1.5 yr olds pull that off-- well, I'm here to say *it was worth the wait*. Just over 2 years ago, she wasn't responding to her name any longer. I'm witnessing miracles daily through my children in ways that most will never understand, or maybe even care to. That's ok though, because I'm just damn glad to be witnessing them myself. They are little nuggets of gold from these uniquely crafted little people who rule my world. Just think what we'd all be capable of if only our zest for life was in the details rather than the big chunks... ahhh, the happiness.

Good night all. I'm going to sleep soundly.

The reality of this life-- WARNING - RAW & UNCENSORED

We have been immersed in special needs since the beginning of our parenting career, now 6.5 years ago. Initially, it was difficult, but we acclimated and forged ahead in the spirit of loving our then only daughter because she was our gift. As we were blessed with more children, we never imagined the magnitude of what would transpire as our babies began to systematically regress into the world of Autism. Facing what we do each day now, makes the days surrounding Bella’s new birth, even with her then myriad of health issues, in a word - simple. That says a lot, because really Bella’s birth was anything but pleasant; within the first 3 months, she had been hospitalized nearly a month prior to her open heart surgery for failure to thrive which was secondary to the state of heart failure she was born into. We were on complete quarantine to protect her from dangerous viruses & bacteria. Following heart surgery, failure to thrive, recurring infections, renal complications from surgery, etc were the norm in caring for Bella. Those times seem simple to us now, because now we are caring for 4 children whom have complex health issues with one condition in common—Autism.

This journey has been tumultuous and draining on all fronts: physically, mentally, emotionally, financially and also on our marriage. My husband and I continue to try with every ounce of effort we can summon to provide with all four of our extraordinary children every day. Unfortunately, these past years have taken a direct toll on us individually from a health standpoint and I feel it important to be quite direct about this. It has been humbling and in some ways humiliating, not being able to provide for our own children what they need and deserve due to our own health limitations. My husband’s health is still very affected. We are trying to remain optimistic, but cannot help but be greatly concerned due to familial history of chronic health issues, like ALS and degenerative autoimmune diseases. My health continues to be challenged, even with medication and proactive measures to work toward improvement. To be frank, both my husband and I are full out exhausted individually and this in itself takes a large toll on our marriage.

It breaks my heart to put these words on paper, not because I’m proud, but because I love my kids (and my husband) more than I ever knew was possible and I will go to my grave knowing I’ve done everything possible to help them. I think most Mothers/Wives feel the same; only the gravity of our unique family dynamic is beyond comprehension for most. I can say this confidently, because I still at times have trouble wrapping my mind around all of what has become normal for our family, day in & day out. As I think of what has become normal for us—despite my typical optimistic outlook, I am disheartened. We live a completely isolated life within our own home, just getting by on basic care for our kids & trying to keep them from regressing further. The few relationships we have been able to maintain are in majority by phone and comprised of about 14 people, including: our parents (4), the kids’ educational team (4), (2) primary therapists for our kids, our primary family physician (1), plus (3) friends between the two of us how have remained even though they are long distance. It is beyond sad to me that I spend more time traveling to, from & in the treating physician’s office per month than I do with my husband alone. Furthermore, when my husband and I are together there is never a time we are not stressed about logistics of how to make our family work or strategizing how we will avoid marital failure, mental breakdowns, health disasters, or the simplest of details in life that are overlooked by most. We do not want this isolation or choose it out of preference; even when we plan to do things we know our family may enjoy, someone gets sick, or one/some of the children are otherwise unfit to participate, etc, etc. Yet again, 4 children in 4 years, all with Autism about sums it up.

We are now full speed ahead on proactively treating the accompanying health issues each child has and doing everything we can to learn about this aspect & how we can improve the children’s health alone, which should translate into a better quality of life for them. The irony is that in the mean time, my husband and I do not have a life. Certainly one that isn’t what we think is even close to sustainable long-term, as is. We are trying to gradually engage the children in all recommended therapies, but are simply unable due to the necessity of manpower, supervision & a depleted budget to hire helpers to carry out prescribed therapy interventions. I do not mean to be anything but honest here. We simply cannot sustain this current state of life we lead together. Forgive me, I have lost all ability to be anything but brutally honest.

Each child has a unique and complex set of medical needs; many of their symptoms are common & there is a clear pattern of autoimmune affect in each of their cases. The following are just a few specifics: Bella has been diagnosed with Hashimoto’s autoimmune disease. Roo’s renal problems are back in full force (regression in toileting abilities). S-bear and SJ have both been under treatment for recurrent bacterial & parasitic infections.

I spoke recently to a group of service providers at state Respite Coalition event briefly, while my husband came home to care for our children (because there is no one else). It was there, I told that group of providers, “I’m thankful each day to God that I’m married. I’m thankful each day He gives us another chance.” I said that because I know intimately the chances that my marriage may fail are a near certainty under these conditions, despite loving my husband greatly and our mutual commitment to one another. Going along with this, I live with constant fear of what will happen next or how I may fail: my children, my husband, myself. How will I protect them from abuse and neglect? How will I lead them by my positive example, when I am feeling so desolate myself?? – these and the worries of everyday life business literally keeps me awake at night.

Just last evening following nightly bathes the unspeakable happened. I was at home with the kids myself & while I was preoccupied with cleaning up after another child’s toileting accident, my 4-year old son outsmarted our secured double bolted exterior doors. In a matter of a couple minutes while I went up & down flights of stairs myself, he pulled a kitchen stool to the door to reach & unlock the high level lock exiting to the garage, somehow he got the truck door open & pushed the garage door remote inside the car. With the normal background noise in the house and my focus diverted, I didn’t hear the garage door go up. S-bear exited our home through the garage door. After immediately noticing him gone from the family room, I quickly searched the house to the normal areas where he’d likely be. He was no where & both the front & back doors were secured, so I ran to the third exit going to the garage. It was open, the car door & the garage door open as well—there was Bella standing on the steps in the garage. My heart literally leapt into my throat it was pounding so hard. I hastily deposited Bella back to the family room sofa with Roo & SJ. I tore back out onto the front lawn to look for S-bear; there was no one in sight down our entire street. I heard kids playing behind us at the main park & ran there praying he’d be there, too. I had to leave the other 3 kids in the house while I sprinted across the block to the park. S-bear wasn’t there & my screams of his name were unanswered. I yelled to an adult man adjacent to the park, in his back yard, asking him if he saw a little boy in an orange shirt. He hadn’t so I quickly told him our address & that he had Autism if he’d see him to please help bring him back. I ran so hard back to the house, asking God that he please have gone back in the garage. S-bear wasn’t there & I still didn’t see him as I looked all directions swiftly. I checked on the girls in the house again quickly, then I ran back out the garage scanning for anything that may lure him any certain direction. I was on the curb in front of our house & a neighbor came out her house yelling to me. She asked was I missing a little boy & I screamed “YES!” “He’s back behind our house at the lake” she hollered to me. By God’s grace she’d spotted him & told some other kids to go to him while trying to figure out where he belonged. He was barefoot, fresh out of bath in pull-up night-time diaper and pajamas. When I spotted him from the edge of the neighbor’s lawn & yelled out his name, he looked at me & then said “ducks” & put his feet to the water’s edge. He cannot swim I thought running toward him. Another adult came out, grabbed him & I yelled to her that he is my son, as I ran around the lake to them. When I got to him & scooped him up, she said, “We kept talking to him, but he wouldn’t respond. He wouldn’t tell us his name.” Through my tears I told her he had Autism, thanked her briskly explaining I had three unattended girls at home. S-bear remained fixated on the water, ducks & unaffected by my sobs as I ran carrying him home. My stomach has been in knots, my mind racing ever since. I lay awake last night going over the things that COULD HAVE happened & how could I prevent this from EVER happening again. He & his sisters are so innocent, yet brave to their detriment, gullible and easy targets in an unfair world. Even if this had been Roo (very high functioning – Asperger’s), she would be easily been coerced by a stranger, because she interprets things literally and doesn’t comprehend what it means to lie or that others are capable of harm when presenting themselves with a friendly nature. I share all of this with you, because this is our reality. This is our family in it’s most vulnerable place.

Even when things are in a rhythm, I spend my life as a parent, much like a wild-fire firefighter; I put one fire out & another erupts, and so on and so on. This marathon we’re running does not work in favor of my own mental health, my husband’s health, my patience, nor, my ability to care for the children, and the marriage, God has entrusted to us. I pray daily for my own strength, the strength of my husband, for my mental fortitude, for forgiveness of my shortcomings, and mostly for hearing what it is I am to do to provide for our family. It takes a village to raise a child, I’ve been told this on many occasions— well, I’m praying for that village daily. I know we will find it, as we always do-- just on God's timeline & delivery in the unanticipated.

Life is precious

Cliche, yes. True, yes. No matter what challenges I have on my plate I'm reminded that all my babies & husband are alive & health within reason. I learned that an old friend passed away last weekend; she was 35 years old & has two little boys & a husband she left behind.

Hug your loved ones like it's the last time you'll see them & don't forget to take time out to not only say the loving words, but act upon them. Please pray for Heather's family... her husband, Ben & two little boys.

If you need a perspective setter on your life or just want to view one vibrant lady. Go to Heather's facebook page. http://www.facebook.com/profile.php?id=1118916444&ref=profile&v=info#!/group.php?gid=110566928980732&ref=mf


How the world did we get here?

As I find myself in a constant state of reflection, tonight I have the thought "How the heck did we get here?" Frankly, *it* life with kids up to this point has become a fluid blur. I'm sure most people feel this way in their individual lives, yet I'm nearly certain it isn't constant. A favorite quote, "Life is what happens while you're busy making other plans." - John Lennon - furthers the concept of time warp our family's short history has become. I'll intro our family with a writing I did last December, of our journey into Autism.

We have four children: Bella 6, Roo & S-bear 4, SJ 2.
ALL four have been diagnosed with Autism.

At Bella’s first well-baby checkup the pediatrician said, “She will be fine”… “It’s the little ones with Autism who break my heart; they often struggle to fit into society.” He was trying to offer encouragement because our baby had been born with Down syndrome. For the first time, I read about Autism during late-night research.

We became pregnant again with twins when Bella was 16 months old. The pregnancy was difficult; they arrived 6 weeks early after 8 weeks preterm labor. They were beautiful and a handful. They had no apparent health problems & were home in one week.

Hectic, but joyful, we survived that first year. At nearly 3 years old, our first concerns arose about Bella’s peculiar, obsession of dangling of objects. She was evaluated & diagnosed with sensory integration disorder. We accepted the odd behavior as one of her unique characteristics. We know now, God was conditioning us.

At 12 months, our twins (Roo & S-bear) were speaking the same words and developing normally. Shortly after receiving 12-month vaccines, S-bear changed completely: no eye contact, wild tantrums, lost language, overall withdrawal. His symptoms were subtle compared to some kids, but heartbreaking because we knew something went very wrong. He began therapy & we focused on helping him rather than the diagnosis. Research resumed. All the kids started the GF/CF diet for simplicity, & with positive results. Around this time, we discovered our surprise pregnancy.

We honestly don’t remember much about that time. It was a sprint, like nursing Bella to open-heart-surgery, remaining pregnant with twins, & caring for 3 small children in the twins’ first year. In S-bear’s first months of therapy we were just getting by; I was so sick with my pregnancy that covering basics was difficult.

We focused on fitting therapies in so the children were kids first. Roo began to show quirks: pronominal reversal, hypersensitivity to sound/light, yet spoke in conversation by two. Bella was just maintaining when following our last child’s birth (SJ) when she lost most language and withdrew, stimming incessantly; she was 4. S-bear’s Autism diagnosis came months later at 31 months.

Fast forward... it’s 1.5 years later; Bella was diagnosed with ASD this summer. Sadly, SJ (our baby) had regressed shortly before & again we received the third child's Autism diagnosis. She was GF/CF, vaccine-free-- Autism didn’t care. We crumbled, hit rock bottom, and then came out fighting-- mad as heck.

Roo’s struggles became glaring after starting preschool this fall. Following more research, we wept again. Our sadness was recognizing her reality… knowing she doesn’t fit in & the one she wants to be with most (S-bear) often cannot reciprocate her gestures. The neuropsychologist phoned us yesterday confirming her diagnosis.
Life with Autism has been a whirlwind, a marathon & a fight for progress. We will make a difference on this journey. We will take our last breaths knowing we did everything possible to recover our children & our walk with this cross has not been without purpose. God help us.

Written by a mother, T. -- Dec. 4, 2009