Tuesday, April 29, 2014

Our Special Needs Journey:Part 14 - Control: Learning to Give it to God



I like to be in control. I must know what comes next and I live by my calendar. I love it. I'd save it from a burning building - yes, my paper calendar is precious to me. It is a great struggle for me that so many things are out of my control at present. Not just the little things but some pretty major things too. I thrive under structure but am living in chaos (although, it's a beautiful mess, my chaos).

At present I don't know where we will live in a few months. In fact, I do not even know WHEN we will move because this is determined by when and IF our short sale is approved, followed by what home is available to rent at that time with a landlord that will accept our madness and chaos and allow us to be tenants.

I cannot control the majority of medical issues my family is facing. Sure, I can take certain steps, like bringing Taylor to the sleep clinic and having an overnight study done. I can follow a routine every night to encourage good sleep hygiene. I can turn off lights and restrict screen usage after dinner. I can buy her medinces and remind her to use her inhaler and nasal spray before bed. I cannot control the outcome and quality of her sleep. (I am trying very very hard, however, to control my response her cranky-pants-sleep-deprived-bad-attitude.)

Saturday, April 26, 2014

Chicka Chicka Boom Boom Week - Snacks, Crafts, Activities, Sensory Play, and Spelling Fun!

In an effort to bring some excitement back into eating for us we are having themed snack times! Each week we've chosen different books (pretty much little kid books to involve the younger kids more and keep them engaged) and the older girls planned snacks and activities to go with each book.

  

Our first theme week was Chicka Chicka Boom Boom, not just because it is one of Dean's favorites (mine too!!), but because it was the book for my Advisory meeting this month and I was in charge of decorations. So 2 birds, one stone...





Throughout the week we ate:
-Alphabet shaped fries/tots
-Bourbon CHICKen nuggets
-Boom Chicka Pop brand popcorn
-Dried coconut (we get big bags at Costco because this stuff is FABULOUS)
-Alphabet shortbread cookies
-Scrabble Cheez-Its (letters on them)
-Fuze flavored water in banana pina colada 
-Fudge dipped coconut Oreos
-Coconut wafer cookies
-Target brand fruit snacks with the alphabet letters on them
-Coconut milk sorbet served in coconut shells (Costco find, these are soooo good)
-Homemade Alphabetties (think: Spaghettios)
-Apple slices with caramel and peanut butter (Chicka Chicka 123 has apple trees)
-Post Alpha-bits cereal, alone or on a peanut butter slathered celery stick


Wednesday, April 23, 2014

Our Special Needs Journey:Part 13 - Getting Help (Update on Julia's Eating Disorder)


I am picturing Robin Williams, in full Mrs. Doubtfire costume, running across the restaurant to perform the Heimlich on his ex-wife's sleazy boyfriend shouting "Help is on the way, Dear!"  Why in the world God's voice sounds like a cross-dressing Robin Williams I'll never know, but I am comforted by it all the same.

Monday we had diagnostic assessments for the 3 older kids at Fraser (a special needs treatment center) -- 2 hours in one location for Taylor and Dean then rushing over to a 2nd locale for Julia's appointment.  I had all 4 kids with for that 4 hour stretch, giving a fairly accurate representation of a typical day for us. :)

These guys are like THE area autism experts. It is difficult to get in to see them and even more-so to create a treatment plan and obtain services with them.  So it's fair to say I am pretty jazzed that we're in: family therapy, individual (for all 3), group & social skills, feeding therapy, and more. Guess what?! They will work with Dean to poop in the toilet! What an answer to prayer this all is!

Thursday, April 17, 2014

Our Special Needs Journey:Part 12 - Test Results, Sleep Studies, & Foreclosure Update



Things seem to happen at lightening speed in this house! Here's a little update on each kid:

---TAYLOR---

Last Sunday Taylor had a sleep study done at the Children's Hospital sleep clinic.  Her dad spent the night with her.  I thought it would be a nice opportunity for Dan to get some quiet, dark, uninterrupted sleep himself - but I guess Taylor woke up a LOT.

Not sure I could sleep with all these wires on either! We weren't given too much info - just that she hardly entered REM sleep and when we return in a couple weeks we'll discuss a CPAP machine. She's started an iron/vitamin C/probiotic combo each night for restless legs.


I think the biggest bummer was seeing how much she picked at her scabs in her sleep. One of her stims is to scratch at various places on her body until she has created a bloody gash. Then she picks at the scabs all day long.  I counted today: 32 owies. I'm gonna make a velcro bracelet and anklet for her to scratch on instead. I'm not sure if it will work, or be comfy to wear, but maybe I can reduce her self-harming this way? (She likes the way scratching feels to her fingers - not the scratching on the skin itself.)


Since she has already had her tonsils and adenoids removed when she was first diagnosed with sleep apnea several years ago, that's not going to be the answer.

Taylor is already using asthma and allergy meds (nasal spray, singulair, omeprazole for reflux, etc.) so that is not the solution to her sleep woes either.  Not sure how she'll feel about that CPAP machine BUT her lack of quality sleep is affecting the whole family (okay look who's talking right?!).  She's been quite cranky lately.

I'm excited for her to begin services at Fraser (a local autism therapy place) soon! It is not a quick process and involves TONS of paperwork and diagnostic assessment appointments but I am optimistic it will be worth it to get them some of the more unique services they need.

Saturday, April 5, 2014

Our Foreclosure Journey: Part 4 - Humiliation

I feel like I'm in a fishbowl. Dozens of cars have driven by our home veerrryyy slowly (sometimes stopping and taking pictures, often the same car will drive by multiple times). I've lowered the blinds on the giant living room window, but that just makes the room darker.  I'm a fan of bright rooms. Oh, and 11 showings before 3:00 and breastfeeding an overtired, gymnurstics-addicted toddler do not make a good combo.

So in a day (JUST ONE DAY) I've gone from months of thinking we were simply walking away from our home (giving me time to sort, organize, and pack) to having it on the market. Just like that. A phone call, a few documents signed with an agent, and the next day people are showing up in droves. Yes, it is the BEST case scenario but having people see my chaos is so humiliating.


Despite trying to educate ourselves on this whole foreclosure process, we had some incomplete and conflicting info. In an effort to eradicate the 2nd mortgage and avoid having our wages garnished we are listing the home as an as-is short sale. While I understood this meant people would be traipsing through our home, while we are here (way too difficult to get the pets and kids and PCAs out each showing), I did not know it would begin the very next morning.


I've been up all night working on, among other things, paperwork needed for the short sale -- our city inspection is not even till Monday. I'm attempting to write my hardship letter and gather all documentation needed. I was caught completely off-guard at 7 am, in my PJs, folding laundry and scrubbing the toilet, to get a call regarding a showing at 8 am. (Now I am procrastinating by writing this blog post.)

The type of buyer for our home does not need to see a clean home, staged, without clutter, freshly painted, and free of chaotic children and animals. STILL - it is HUMILIATING at a level I'm not comfortable with to have several strangers see the messy daily life of my home. I am working all the time to keep up with laundry and dishes, to organize the exceptional messes the kids create (there was poop in the bathtub this morning from Dean's bath last night. I had no idea because someone else was in charge during that time.) and make our home nice.

And here are strangers seeing the natural state - where every imperfection is relevant. To have purchased our home for $230,000 (in 2003 - height of the market) and find today it is listed for less than $125,000 is a bit heartbreaking. (I know all the reasons WHY, it is still a bummer.) To be told "it has great potential" is difficult to hear.  I live here. This is my HOME.  It has been for over 10 years. I work my ass off to provide a bright, fun, and as-clean-as-I-can-physically-manage home for my family. Yet the value of this home is shit-cheap. Awesome. That feels great. My self-esteem is at an all time high for sure (insert huge eye roll here).


Up to this point I have been embarrassed over our "situation" but felt in control of my emotions because I know God is in charge and this is His plan for us (we felt peace about that). Today, my pride is taking a hit. Humiliation is at an all time high. There is my home - listed online as a foreclosure. (It also says my roof is really old but we replaced it less than six months ago...) I can't defend myself or tell our story. I must simply accept this truth about our financial situation. I still trust that God is in charge of my life - I AM human, however, and allowed to feel like a loser.

I likely won't see these people ever again. They see homes like this all the time (rehabbers, realtors, etc.). They walk through the home in its entirety in less than 5 minutes. It is for the benefit of the best possible outcome based on where we are now. And yet - each person that comes to the door causes me to throw up in my mouth a little.


My home, which is personal and precious to me, is a slab of wood to gut and recreate to someone else. We are not real people with real struggles, we are losers who could not honor our commitment to the bank to pay a loan. Should I take it personal? NO - and as much as I know that intellectually, my heart hurts. So does my stomach, all this stress is not really helping the pain.

So there is no real purpose to this post, outside of venting. Sometimes the stress of all that I need to do is more than I can cope with. So I'm complaining as a survival mechanism. That is all.

Thursday, April 3, 2014

Autism is not... What the Bible has to say about Autism

4/2/15 I wrote this last year, on Autism Awareness Day.  It has been a long year since then and I have some thoughts to prelude this post with:

"Awareness" is bittersweet. All this awareness has made autism a common household word. That fact does NOT make people any more INFORMED about what it is - or how it impacts lives. People are now so familiar with this word they undervalue the significance it has on those with autism and their loved ones.

I've heard "Oh, at least it's JUST autism," "they are so high-functioning," "she doesn't look disabled," or "they are working on fixing that," and, most often, "Your parenting is enabling your kids, they don't actually have a REAL disability." These things take away from the truths my family deals with daily. It takes all the focus away from how hard my children work to meet the standards we have set for ourselves.  Although I have high expectations for my children, that must be balanced with accepting their LIMITATIONS. 

Those with Autism are more than a label.  So while I respect the concept of an Autism Awareness Month I reject the motivation (to cure) and the outcome.  People donating money to groups dedicated to "curing" and "fixing" autistic people, convinced they must change these people and normalize them to coexist in society are funds wasted on stripping them of their individual brilliance. Watch this video for more on why Autism Speaks is a hate group. 

Seriously. This isn't a cancer, some medical condition, or disease to CURE. My children are honestly blessed to be autistic. (And my marriage has been strengthened in this journey.) They have everyday challenges that are very REAL; struggles that are exhausting for all of us. But all of it contributes to their character and the amazing people they are. (Despite all the complaining I tend to do.)

There are many REAL ways to support autism - to give them the tools they  need to achieve their goals while allowing them to be exactly who they already are. So if Autism Awareness means education, then I am all for it. 

Here are great ways to support people with autism and their families: Love them. Just as they are. Accept the grocery store tantrums and the rigidity in playtime, and the meltdowns over "painful" clothing due to sensory issues. Hug them - for my children a good squeeze hug is the best medicine of all. Take their mom out to coffee (trust me, she needs it almost as much as she needs a nap). Have them over for a playdate even if your kid does think they are a bit strange. 

Talk to your friends who have autism (or parent someone who does) as if they are no different than you.  And when they desperately want to say "I'm so different and it can be difficult" then talk about that too. Because that can be hard for us to say. We are a fickle breed.  


--- Original Post: April 2, 2014 ---

Autism is not a badge of honor. It is not a contest ("my child is more disabled than your child"). It is not a burden. Autism is not an "overdiagnosed" or "fictitious" disorder. It was not "created by the medical community to sell more drugs." It is not an "excuse for bad parenting." It is not merely a label. It is not one size fits all. It does not define someone. It is not a disease needing a cure.



As is typical of me, this will be far too long. I have far too much to say. I envy the ability to be pithy and simple, to say much with little. But as an "Autism Mom" here is what I want you to know:

Today is Autism Awareness Day. I am passionate about learning, understanding, and celebrating the differences that make a person on the spectrum so unique and so special.  But as I sat to write something that could put into words what I want others to know, I was stumped. If you know me at all you'll agree I'm not often lacking for words, so to feel so strongly about a topic but silent on how to express the feelings is a rare occasion indeed.

It is in part because I need more awareness.  I am not on the spectrum myself.  I have my own quirks for sure, but would say my struggles are more in the mental health arena (think: OCD, lacking emotional regulation, lifelong depression, bipolar...).  Most of the awesome people who live with me do have autism though. This often makes me feel like an outsider in my own home - on the outside, looking in through a fogged up window.  

I want to understand my children and use that to be empowered as a parent to give them everything they need to succeed.  When I say success I am not trying to conform them to the definition the world uses.  I only intend to teach them to love God above all else and to love themselves as well, just as they are. Just as I desire to be loved for who I am, not what I am capable of or what I may achieve. 

I am working daily on understanding the minds of my children so I can be who they need me to be for them. I am not naturally patient - I am ever multi-tasking and processing things at lightening speed in an effort to waste no time. God has blessed me with children who require I learn patience.  I have the opportunity to come to God daily to be equipped for the task at hand.

Things that come easily to me may not to my children (say spelling words, for example, or the ability to spot an object in front of me when there are multiple other objects competing for my attention). Their struggles are very real and impact how they interact in the world, how they learn, and how they show emotion. Since I do not have many of these struggles so much myself, it took me a long time to be the Mom they need me to be.  I was too busy working so hard to "fix them."

I needed awareness, just as many others do.  These amazing kids of mine? They don't need fixing because nothing, NOTHING is "broken." There is nothing "wrong" and no disease to "cure." Getting them the help they need to be the best versions of themselves does not mean changing them.  It means enabling and strengthening them.  What amazing brilliance, intelligence, and creativity this world would have missed out on without Autism!



So, for me, awareness means giving them coping tools, adapting their learning environment to fit their learning style, adapting the way I parent and discipline them to suit their own individual needs. It means accepting that my daughter needs to twirl, and dance, and jump, and hop, and move, and sing when I desperately want things to just be still - and silent. She has inherited my musical & dance/coordination inabilities and my first reaction is, if I'm honest, embarrassment - with a little frustration mixed in. But it makes her happy. Just like coloring with her headphones and iPod on calm her. It is similar to my desire to binge-watch Friends episodes and eat Sour Punch Straws...

Awareness for me looks like providing a safe, accepting, sensory-friendly environment for my children to learn, grow up, and know they are unconditionally loved. So I beg their forgiveness as they deal with my learning curve, my imperfections, and my ignorance as I plug forward. 


[Not as glamourous as a leather sectional, but these chairs meet their sensory need to feel "hugged" and to bounce, move, and fidget much better.]

[Bruce is really into getting into small spaces - like this toy box or that basket of laundry he dumped out.]

There were days I wish I had a sign "Autism. Kindly quit staring & judging." I realize this is FOR ME, for my benefit.  I care far too much what others may think of me, my children, or my parenting skills.  As I embrace every difference that makes my children so amazing, I am learning to care less what others think.  What matters to me now is what God thinks and that my children KNOW I love them. I like them. They are beautiful the way they are.

Here are some things I'd like you to know, in my effort to celebrate "Autism Awareness Day":

-Autism is not a punishment from God. It is not the result of sin in this world. It certainly does not need to be "cured" like this guy thinks. That perspective makes my blood boil. I have encountered those who "helpfully" let me know my children simply need more spanking and stricter punishment. I cannot spank the autism out of my child any more than I can slap the ignorance out of you! My children need healthy boundaries, consistency, routine, and for me to learn how they operate and respond. This is really no different than any other child.

Scripture clearly tells us we are made in His image, for His glory, and by no mistake or accident. For those of you who do not know my daughters let me assure you - they ARE living for His glory indeed!


[Sat down to breakfast one morning and found Taylor's notebook open, this poem to God written on it.]

Psalm 139:14 "For you formed my inward parts; you knitted me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." 

John 9:2-3 "His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."

Exodus 4:11 "Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?"

Autism is not a contest. Please stop saying to me "So and so is more disabled." or "Blah blah's kid has worse autism."  Understand this: First, autism is not a disability.  It is an ABILITY. Second, being on the spectrum is hard in many ways because you see the world a bit differently, feel things a bit deeper, and struggle with things that are a norm or come naturally to others. Having autism is always a challenge and just because every. single. person. with autism is different than any other does NOT mean one is "worse" than another. Or that higher functioning autism means there are no challenges at all.

Third, although all my children are verbal (well, except the baby, but he's only 14 months, he'll get there) and intelligent, and creative, and mobile, and (mostly) toilet-trained, does not make life EASY. At least not for me as the mom. I am wiped out. I struggle to simply exist. So pretty pretty please don't tell me how easy I have it, how much "worse" some one else has it, or how lucky I am that "at least your kid can such-and-such." If you do, I may have to go ahead and punch you in the throat.  I mean, with all that spanking I'm not doing I've got to direct my physical aggression somewhere right? :) 

Also, Autism is not invented or over-diagnosed. ADHD is not a pretend disorder parents use as an excuse to sedate their children with calming pills because they are lazy parents. (Oh, and sometimes changing a diet alone or dousing them in essential oils is not enough to help them.) I see firsthand how real the challenge of over-stimulation and inability to focus is.

It is people like that that have held me back for so long from being the parent my children need and deserve. I had been trying to change them to fit into the way the rest of the world operates when the world should conform to them - because they will be the ones who really change it!

It is people like that that have caused me to have such a lack of support and education.  I wanted to fit in, to raise my children the way everyone else is even though typical strategies are not what work for my children. It is people like that that have made me lonely. Judgment for a life you do not live and cannot understand has hurt my feelings. I am not always strong enough to be the Mom they need when others judge, because I do have low self-image and struggle with a desire to be liked and earn my place to exist in this world. 

Do not tell me my child "does not look autistic." What does that even mean?! There is not a "look." If you meant it as a compliment, thanks. It was hard work getting here, to where you see us now. For the parents and the child. That said, having autism is not about looking different than most of the world - it is about thinking, feeling, and operating a bit differently. In a good way - because life here, with my children on the spectrum, is never ordinary or dull.


[I never want a world where THIS is not my life. Where the house is arranged into rainbow, numerical, or alphabetical order and is covered in maps. Yes, maps are my son's obsession. I love this version of life, the one where my kids are transformed by a simple weighted blanket.]