Sunday, May 20, 2018

Men are that they might have joy!

My husband and I said “no” to spring basketball. #3 is quite good but we needed to reclaim our Saturdays. For the past 5 weeks I have been outside, every Saturday from dawn to dusk, working in/on our yard. We are some of the few Californians who do all our own yard work, instead of hiring out.

My mom began cross-stitching during a very busy time in her life. I remember her telling me that she loved creating something that didn’t get undone. She would stitch something beautiful and could frame it and hang it up and enjoy her accomplishment. 

This is how I feel about my yard. I can put in some hard work and enjoy beholding it every time I look out my window or go outside.

Men are that they might have joy. What brings you joy?

Friday, April 13, 2018

Autism Awareness, going on 5 years

Here it is again—April—autism awareness month and ironically, the same month my autistic son was born in. It has been five years since we started receiving therapies for behavioral, cognitive, speech, and social delays (four years and two months since his “official” medical diagnosis of autism). 

I always think in fractions, and if I live as long as the average American female (I added a couple extra years due to the 1/4 Chinese blood in me) of 83, and assuming my autistic son is alive that whole time too, I have already completed almost 1/9 of this mortal journey dealing with autism firsthand. I recently read about a crazy race, which consistently changes its course and mileage, is hard to get in, has quite a number of dangers involved, which may require any number of skills to complete, and is so challenging that only about 60 people have completed it since its inception in 1986– the Barkley Marathon.
This race’s description sounds like my description of dealing with autism. I honestly feel like I have few concrete answers and I am turning over rocks, to find clues, all the time. But unlike the Barkley Marathon, which you have the choice of signing up to participate, I was not given a choice and thrown into the autism race, stumbling and confused. Finishing the race, I guess, would mean finding a complete cure, but like most families handling autism, we continue along, in it not to win it, but in it because you don’t quit your kids.

(He was super-thrilled on his birthday, as you can see 🤣).

In the last five years, I have been constantly upping my game, the obstacles keep coming. I have yet to face the impending challenges of when my child surpasses me in size and stature and whom to burden with his care when I am too old and worn out, also possibly the onset of adolescent seizures, which occurs in half the autism population. I don’t ever intend to come across as a pessimist, but speaking realistically— an object in motion tends to remain in motion, rarely just randomly changing trajectory. Kind of starting to see our trajectory. Oh trust me, I’m always reading and trying new things, but not at the expense of just doing things for the heck of it, always researched. (Come on—I’ve got 5 other kids to care for!) Trust me, there is no easy way!

So, where are we right now? Let me tell you of a typical day in my household:

#5 usually wakes up between 6 and 7am, most often because his older brothers do not know how to be quiet as they’re getting ready for school, at least not by my standards. He immediately, as of the past few weeks, tears his curtains down. Fortunately, they are on drapery clips instead of hung directly on the rod. This is the current challenge I am dealing with, enough so that I want to get an outside shade that I can control by remote control so that I am in charge over when the daylight comes in and not him. 

Almost immediately he wishes to eat breakfast, which quickly escalates to crying and yelling if not fed immediately. Don’t know if this is because of a growth spurt or if it is because of one of the supplements that I have started to give him (that is supposed to “help” but I’ve heard also increases appetite drastically.) Or, maybe it is because he is having to take seasonal allergy medication and wakes up a little off. I have no idea, count your blessings if your kid can tell you what’s bothering him!

Once fed he is pleasant and happy, which fortunately for us, is his usual state.

(Don’t know how the school photographer captured this one-in-a-million pose, but give that man a raise!)

Six out of seven days of the week we have to go somewhere in the morning before 9 AM, usually to school, Sundays to church. This requires fixing a chewy to his collar so that he will hopefully not chew other things. For the last year I have only been buying button-up shirts or polos. This is so I can click a chewy through the top button hole. If not through a buttonhole and simply clipped onto his clothes, he yanks them off and we lose chewies. Not good for anyone.

We also don’t leave home now without him wearing a GPS tracker belt. This is due to the fact that my happy boy is also a happy wanderer and happily wandered out the front door when it was discovered unlocked one day. This led to the worst 45 minutes of my entire life as I had to rush back from the store and send all my older children on the errand of finding their lost little brother (who didn’t know he was lost, even a little). It was I who discovered him, naked, only a quarter of a mile away, while I was on the phone giving a description to 911 after having heckled all neighbors that I passed while driving around screaming like a crazy person. Most parents don’t have to worry about stuff like this!!!

We don’t leave home without his iPad mini, which contains a $300 app, fully customizable for speech. Of course, the trouble with autism, is understanding the importance of communication. So he is still learning basics, how to ask for food. One day I hope he’ll ask me to change his pull-up or tell me his head hurts. One can only hope.

Safety is always an issue with this guy, every bedroom and bathroom is locked to keep him out of everything, including potential drowning in bathtubs. My family and I are acquiring excellent bladder control, because rushing to the bathroom includes having to pick the lock before you can get in to go. It is a luxury for my youngest to get to play in her bedroom; it’s almost always locked to keep big bro from literally tearing the room apart :-(.

Little guy has me employed now, by IHSS, to be his provider. He requires eyes on him at all times to ensure he is not climbing on the wrong side of the stair banisters or landings (scary!!!!) or standing on chairs/desks/tables or climbing shelves. 

Another daily joy is feeding him. Picky eating is an understatement. Couple this with trying “helpful” supplements and diet changes in order to see if anything improves in his abilities to communicate as well as lessen the constant stemming—I’m a full-time dietitian with one of the hardest clients in the world. You should see the almost-wrestling matches that ensue daily when I hold him down to give him supplements and allergy medication. My husband has yet to give this bull a ride. 

You already noted the mentioning of pull-ups. Yup, still not toilet trained. 3 attempts last year. I’m still not giving up on this, at least getting him time-trained. But right now, I just don’t have the stamina. Maybe we’ll attempt again over the summer. Til then, he doesn’t seem bothered by soiled pants—indeed a blessing and a curse at the same time.

The biggest of mansions in heaven to his teachers, aides, and therapists. They say it takes a village to raise a child; with autism—it takes a village to keep a parent from giving up on raising a child. 

By evening time he goes down to bed okay. Often roaming around in his locked and dark bedroom. No lights of any kind allowed, practically no toys either—otherwise he stems all night flapping them. And now—curtain yanking. But at least he isn’t flipping the mattress out of the frame anymore—thanks to my hubby strapping it down.

We still get occasional night-wakings. Some times we wake to giggles and “singing,” every now and then—thrashing and screaming :-(. It’s these early, unexplained wakenings, or when he is ill, that I really think I can’t go on. But I can’t just quit. I would die without the tag-teaming from my husband and our four eldest children. They didn’t ask for this major detour in life either and I am eternally grateful for them and their support.

This is autism. When he was first diagnosed I hoped for speech. I hoped for being mainstreamed in to regular school with an aide. I hoped for independent adult living. I still hope, but I also must accept reality. I’m not giving up or giving in: I’m just giving. For the rest of my life.

Tuesday, August 29, 2017

10 Ways to Have the Busiest October EVER!!

When one turns, ahem, almost forty, it is advisable to freak out and fill one's birthday month with as many activities as possible. If you wish for a wild-never-a moments-rest-month, then read on!!

1. Turn almost 40. Celebrate by eating whatever you want and accepting well-intended compliments that you don't even look close to 40.

(3 and 4+4+1=39--ha ha!)

2. Go to your 20th high school reunion. In Parkersburg, West Virginia. Maybe even get one of your flights delayed so that you can visit extended family for a couple of hours at their new business establishments.

 Then prepare yourself for all the fun of arriving to your final airport at 2am and driving for two more hours. Be certain to rent a little yellow VW bug so that when you drive around the small town of your alma mater, everyone will notice you and maybe even flag you down in your old neighborhood to suspiciously ask what you are up to. Be sure to visit with as many people as you can and drive to all your favorite establishments of your bygone teen days-- since you don't know when your next visit might ever be.

3. Walk the height of the Eiffel Tower. If Paris is unavailable, try the New River Gorge Bridge. In particular, the Bridge Walk, aka walking the entire catwalk that spans the length of the bridge, underneath the creaking, rumbling sounds of the busy highway above. Bask in the incredible, lofty views; dig the tiny pin dot of rafts taking on the white water in the river below. Be grateful your are harnessed in and therefore unable to fall off and meet an untimely death.

4. Drive the crazy back roads of West Virginia and Virginia. As the sun is going down. With a dying, then dead phone and therefore no access to your map apps (cute little yellow bug had no phone charger!) (But, some places were too remote to even pick up a signal, anyway!) Crawl in to bed at an old, historic inn, to which you will not have time to learn all about it's cool history. However, you will be able to rise the next morning and dig these old builidings.

What do me and Thomas Jefferson have in common? Besides our love and appreciation for the Declaration of Independence, we have both taken in the soothing, annually 98 degree temperatures of the naturally effervescent Jefferson Pools. The building was probably in better shape 240 years ago, but no biggie.

5. After a relaxing soak, drive further in Virginia to meet up with one of your oldest pals whom you knew in 4th grade and haven't seen for a decade. Enjoy the fact that you are still good friends; look forward to your next get together, secretly committing to yourself to not make it another decade apart.

6. Board a plane for home. Have some more fun with those flight delays. Make your husband lose three hours of sleep to come and pick you up. Hit the ground running four hours later with the demands of your six children and a brand new week which includes getting new flooring for your entire house. Which includes tile demolition. Which means dust. For weeks. But realize it is worth it to see gorgeous floors like these...

7. Celebrate your eldest child's 17th birthday--yea! And attend an IEP meeting for your special needs child--ugh.

8. Pick out coordinating outfits for 8 people. Attempt to get 8 people smiling and cooperating at the same time for family pictures. 

9. Help plan and carry out a Halloween party for 22 fourteen and fifteen year-olds. Move the party indoors due to rain. 

10. Purchase and assemble costumes for 8 people. Litter new floors with costume pieces and fabric scraps. Go to church's trunk-or-treat and win best family costume award.

11. Make attempts to sleep in in November ;-).

Monday, July 24, 2017

Take My Breath Away...

This past week I got to see one of the seven natural wonders of the world: The Grand Canyon. Got to spend the whole day there, from several viewpoints up top to half-way down the canyon--on a mule! My dear mother-in-law watched my two youngest children so I got to explore with my hubby and four oldest--all without having to constantly hold someone's hand or worry about them. What a treat!!!

We explored the higher and less-crowded north rim. My husband and I were definitely not expecting the breathtaking drive there. We thought it would be deserts and dry--not mountainous forests with beautifully interspersed meadows! And then peaks of the canyon!

My friends, who know how much I "love" animals, will not believe that I indeed rode a mule for 3.5 hours since my husband didn't take a picture of me on a mule :-(. Oh well--here is everyone from my view--on a mule. (In his defense--my phone was on a strap around my neck--his was not and he didn't want to drop his phone down the canyon!)

#4, right behind our guide, riding Leslie.

Then #3 on Bill.

(Then me on Suzy Q. The "Q" probably stands for quirky--she kept trying to pass #3 and Bill--and was notorious for nipping at passing vegetation--even ripping out whole plants and trying to munch them while she walked).

#1 was after me, riding on Wickiup. 

#3 on Rooster. She, being our most experienced rider, was given the most stubborn of mules. While most of us just had to nudge our mules with both feet--she actually had to whip hers in the behind!

And lastly, my love, riding on Ike. (There was a couple after him, and they were nervous on their mules).

I could post the hundreds of pictures I took; I will never tire of the views!!!!!

Um, that's really deep.

Nature-made Supai Tunnel

The Supai Tunnel Trail--check out the rest of the trail that meanders down, across a spring (see the bridge), and down, down, down to the bottom of the canyon. Unfortunately the mules don't go down to the bottom anymore (too hard to maintain the trail). Another day I will return and hike to the bottom of the Grand Canyon!

Wednesday, June 28, 2017

Bittersweet April

"Sorrow is a fruit. God does not make it grow on limbs too weak to bear it."

Victor Hugo

Being the advocate for someone is very hard. It requires patience and stubbornness. It requires more than I have time to expound on; just know that about EVERY decision I make has my son at the center of it. 

This is why April was so hard. The company that provides my son's behavioral therapies informed me I had too many change vouchers for the first quarter of this year. (These are any times I had to change locations for therapy, was late, or had to cancel). I was given an ultimatum to not let any more incur for the quarter. But, we had one day during a crazy rainstorm when I had to pull my car over to wait it out, because I couldn't see. This made us late to therapy at the clinic. And this was the final straw.

I arranged a conference call with our local operations manager and the company's head guy in charge of family services.
After two hours of me crying and trying to convince them to give us another chance, pleading my case that I have my special kid plus five other children who need me (and how many people have that on their plates!) they still refused to keep us. 

This was devastating because it meant going back to square one on locating ABA companies that service my location. As well as, the dreaded wait time. There are too many children on the spectrum and not enough services in any aspect, so there is always a wait. (I did find a company but that's 3 to 6 months of waiting. School ended on the same day that his old therapy services ended 😔).

I cried so much in the month of April--probably more than any other month in my life. During spring break I tried to suck it up and attempt potty-training a 2nd time. During this time I somehow acquired strep throat. Miraculously, no one else got it--even with all my kids home for the whole week! This was the first hint of sweet to my bitter cup.

Another sweet was a private moment while attending another church meeting. The man conducting was the stake president from a different stake, other  than my own. He was telling a wonderful story about his wife's great grandfather. Not only was the story interesting, I noticed how he conducted himself and his mannerisms. It reminded me a lot of my own husband. Then I got to thinking about how humble and personable my husband is, as well as nonjudgmental. I was kind of having a conversation with the spirit, in my head. I just felt that my husband was such a humble and willing man and he was needed, by the Lord, to serve in callings where he would be able to influence and help many people. I was so moved that I wrote about it in my journal, which I don't write in very often.

During our weekly date I felt I needed to share my thoughts with my husband. He of course was very humble and just smiled while looking down and sayed a quiet "thank you." 

The next day was Easter, and we received a phone call from the stake  executive secretary to come and meet with the stake president of our stake. After talking to both of us for several minutes, finding out the details of our week, asking us how our marriage was, and then turning to my husband and asking some very personal, deep, spiritual questions, he extended the call to serve as a counselor in the bishopric for our ward. My husband and I both immediately began crying. Because of our son and the demands of his special needs, we just assumed that we would never be able to serve in certain callings in the church (because of the time commitments). But my experience had prepared my heart for what was to come. I had received a witness that my husband was needed and we would be okay in his extended absences. "You can't keep a good man down." (And honestly, I don't see much of a difference in his time that he was already spending with work! The Lord is blessing us).

Bittersweet April--thank goodness the sun rises after the darkness. We are on a new waiting list for my son's therapies. Until then I "wait on the Lord." (Proverbs 20:22)

Saturday, February 25, 2017

Tying up loose 2016 ends...

I realized that there were some things that I mentioned on Facebook, last year, that I never followed up on. I left things hanging!

First and foremost, was the news I shared about my aunt. She had a bike accident and was found by some cops on the side of the road. My uncle, her husband, was out of town for work. Friends were able to contact him and report her dire condition--she was not responding and after being rushed to two different hospitals, eventually ending up at Stanford, severe brain trauma was evident. She was kept comatose for a week while they worked on saving her brain. 

Essentially the right artery (there are two main arteries in the brain--one on the left and one on the right) was damaged beyond repair and therefore blood was flowing into the brain and spilling out into the brain and dura (sac that the brain sits in). They ended up packing it with platinum coils and basically sealing it off--all the while hoping (and praying!) that the left side artery would start to compensate for the right. Hallelujah, it did!!

Then they did a lot of tests to make sure she could swallow and talk and asked a lot of questions to jog her memory. 

After almost two months in the hospital, she was able to be released to a nursing facility. But, my uncle was ready to take her home and was able to help speed things along for her recovery so that she could return home. She is walking, talking, is regaining most of her memories (there are little holes here and there). She cannot see out of one eye. But, I feel like her amazing recovery has been the biggest miracle, for us, in 2016.

It is truly a miracle that she is alive. One night my cousin, Shawn, was texting every hour and we thought she was going to die. We finally had to go to bed and prayed that her condition would 
stabilize/improve, which thankfully, it did.

My beloved aunt and her devoted husband, who never left her side. So glad she is still here with us. 

Thursday, September 22, 2016

Perpetual Child-proofing: Welcome to my world

Oh, the joys of having a child with special needs! (Sarcasm detected?)

These past six or so months have had us on high alert. For those of you who have had children, perhaps you remember having to childproof/baby proof your home? Perhaps you still are in this phase. It seems we are back in to this phase again. Imagine your toddling toddler able to reach and climb like a school-aged child. Yup, still lacking fear of almost anything, but now with the ability to reach practically anything. Oh boy.

And oh boy, this boy!

Parents will do anything to keep their children safe. Some parents of special needs children are doing this over time!

#5 is not a hyper, masochistic daredevil (and thank the Lord for that!!!) But he is not afraid to climb on to practically everything (dryer, furniture--including tall shelves, the landings above stairs, the inside of closet walls, the side of the above-ground pool). And he is simply always on a mission--to find interesting things to tap and chew. And just so you know, almost everything can be tapped or chewed: bus passes, credit cards, bookmarks, wooden utensil handles, leaves, charging cords, ear buds, bottles of household cleaners.... Keeping him safe is a full-time gig.

We've had to up our safety game these past few months. This means the dismantling and doing away with the above-ground pool and changing out almost all 19 doors' doorknobs to locking ones. Me and my family are all getting pretty fast at unlocking doors with that little pin thingamajig! I'm sure he would have a blast figuring out how to pick the locks too, but thankfully we still have height to our advantage and he can't reach the locking-picking thingamajig at the top of the door jams. My hubby and I are still going on weekly dates, but now the older kids in charge can't have the tv on, because even it is just a kid show for #6 to watch, they can get distracted and miss that their littlest bro is climbing to the tallest shelf on the bookcase in the other room. 

Love our little explorer and I'm trying to keep rising to the special challenges he brings. I love that my family is so vigilant and forgiving (those bus passes, bookmarks, charging cords, and ear buds belonged to them....)  :-/