Thursday, January 23, 2014

Our Special Needs Journey:Part 6 - This IS Our Normal - A Week in the Life of 3 Children with Autism

It occurs to me as I sit here typing, I don't know who I am writing this to - God, myself, anyone who will lend an ear and give a virtual hug - or WHY - to vent, for advice, a sounding board, a prayer? Regardless, I need to take the time, in the midst of the busyness of life, to sit - and to think. This post is ridiculously long but going through one week of our life with you explains SO MUCH.

I often feel so overwhelmed by all there is to be done and by all the thoughts swirling around in my head that I fail to accomplish anything.  I have days where I sit in "my" chair in the living room and can't figure out where to begin.  Pay bills? Work on the taxes? My Bible Study? Schoolwork with the kids? Balance the bank account for a volunteer organization I'm Treasurer for? Create invites for Bruce's party? Fold laundry? Fill out paperwork for Julia's doctor appointment next week? By the time I determine the most pertinent and time sensitive project, it's 2 am. (I was interrupted a lot, of course.)

Still there are other days I want to crawl back in bed.  It's not just that I'm tired, which I am.  I am tired all. The. Time. It's that I am so absolutely overwhelmed I cannot even comprehend what my next step will be. There is so much shouting and crying and whining in this house.  Everyone needs so much from me.  All the kids require much supervision, and prompts, and reminders.

I love being a mother.  There is no other role I'd rather play - but parenting is not JUST about the joy. The bad comes right alongside the good.  I can choose my reaction. I can determine I will enjoy as much as possible, and give God the rest.  I can choose to have a good attitude and be a healthy example for my children.  That said, I have days where I fail - in my humanity I fail to see the joy. Tonight I've chosen to have a bad attitude, to feel sorry for myself, to hide in the bathroom and sob.

Today I awoke before the alarm (as often happens since my sleep is restless and involves frequent waking). Before I crawl out of bed I talk to God.  I thank Him that I am alive, that my sweet boys are sleeping next to me (both the almost-5-year-old and almost-1-year-old sleep with me on nights my hubby works), that we have a home (we are in the process of foreclosure and I know that having a roof over our heads is a blessing at this point), and that I can come to Him with every need.

I beg Him for the strength to get out of bed. To get me through this day.  It is not remarkable, it is similar to every other day.  And for that, I need His help.  Strength, energy, patience, to show love when I don't feel it, to react in kindness when I don't want to, to be patient when I'm fed up - for all the things that don't come naturally.

Confident He will equip me for the role He has called me to, I carefully slip out of bed, desperate for a shower - the first one in days - and breakfast.  No such luck. How that baby knows I'm not there, when he was so fast asleep, I'll never understand.  Alas, Baby Bruce is NOT happy.  I pee holding him.  I scarf down some cereal (likely my only meal today) and then wake his sisters.

Here's what a week looks like for me:

Today is Wednesday so I'm gonna start with last week. Last Thursday I got up scary-early (scary because as unattractive as I already am, I am downright scary looking that early -- those under eye baggies make me appear to be a tree-sized racoon). Julia has a 7:00 am lab appointment to draw blood, followed by 2 hours of Occupational and Physical Therapy.

Fortunately I am able to leave Dean (almost 5) and Taylor (9 1/2) behind with my hubby (Dan). He works 3rd shift so he's home.  Mostly in a half-sleep zombie state, but it's better than dragging the other kids with. So SO much better.  Speaking of zombie-state, Julia fainted while having her blood drawn.  She was so pale when she woke up she could star in a Twilight movie. (Well, I haven't actually seen any of them but point made...)

Julia, Bruce, and I find ourselves with almost an hour in between appointments.  Since the clinic is across the street from OT/PT (which is 20 minutes south of our house) and Julia had to fast for 12 hours, I opt to kill time at the Burger King that has a play place.  I love how Bruce insists on using a fork to eat, impeccable manners for an 11-month old! Oh and Julia loved going down the slide with him!

After therapy we make a quick stop at the thrift store. Bruce's one-year photo shoot is today and I wanted some props.  (I realize he has a couple weeks to go but I wanted the photos for the invites for his 1st Birthday Party. Crap, that reminds me, I need to create, have printed, and send out invites. Oh and buy stamps, postage goes up this month.) It was a successful trip, check out these cute play-kitchen fruits I found:

Photo Credit: Carpe Diem Photography
I rush home, battle with Dean to get him on the bus to preschool, then rush like a mad woman to set up a photo booth`in my living room.  In true toddler fashion (omigosh, did I say TODDLER in reference to my wittle itty bitty newborn baby?! How can time move so fast and stand still both?) Bruce falls asleep 20 minutes before the photographer gets here.

So he was sleepy, serious, and not smiley at all.  Meagan worked her magic though and all that effort was worth it! Check out her stuff and if you're local, hire her for your next event! I get Dean off the bus and the rest of the night is uneventful: 

Twenty reminders till Taylor FINALLY sits to use her nebulizer and inhalers, Dean poops his underwear, as he does every day (I don't even want to know why it's red, liquid, and foulest-ever-smelling!), a dozen prompts till Julia does ONE load of laundry (not only do I NEED help - I cannot get it all done myself- I think it is important to learn these skills and contribute to the household), 3 hours of squeezing in some schoolwork (which involves a lot of redirecting, fighting, fidgeting, and general distractions), breaking up sibling fights, dinner, the whole bedtime routine, wrestling with Dean to brush his teeth, and so on. 

Friday involves completing my BSF (Bible Study Fellowship) lesson and homiletics while snuggling a baby (bliss), washing zillions of dishes (with Bruce asleep in the Ergo carrier), then I went downtown to Children's Hospital for a visit with a Lactation Consultant.  I've got some serious trauma going on thanks to Bruce's giant top teeth and death grip on my nipple.  The kid won't use a pacifier, he always has my boob in his mouth, and has so many food allergies I cannot yet wean him. I needed an LC's help to retrain his latch, etc.

I finally got to check out this fabulous, fancy, new Mother Baby birth center - Bruce was born the day before it opened and we left just hours before the transition to this new facility. Baby fever - but a few minutes back at home cured that! I lost 3 hours of my day but think I got the information I needed. 

Those rosy red cheeks may not look like much to the naked eye, especially when he's so sweetly sleeping, but experience has trained my eyes.  Those chubby pink cheeks signal that Bruce and I are in for a long night. I can't recall what he ate that he was allergic to, but I know the girls (my daughters) were watching him for awhile while I ran to Target. Twice. The pharmacy made an error and did not give a full dose of the medicine. Whatever he got his hands on (and of course put in his mouth because, hey, he's a baby) has caused a reaction.

Bruce doesn't have the anaphylactic shock, face swelling type of reaction to allergens. He has FPIES (food protein intolerant enterocolitis syndrome) - an endoscopy revealed bleeding in is stomach and intestines and the colonoscopy showed polyps on his colon.  So he is in PAIN. Often the only physical signs are red spots, patches of eczema, and bloody stools. What follows is HOURS of inconsolable crying. 

I'm not sure crying is the right word. It is absolutely heartbreaking to watch your infant writhe in pain for hours and scream (at an 11 - his amp goes all the way to 11), wiggle out of my arms, and shed endless tears.  On this night I was concerned because over 5 hours had passed and he has yet to quit (he usually falls asleep from sheer exhaustion).  So we head to the ER at Children's downtown.  

By 2 am we are both home and he is, finally, asleep.  Although he had xrays and an ultrasound, nothing could be done for him.  Turns out he just needs to have whatever the allergen was move through and exit his system.  By morning he seems to be feeling better - I have been up all night changing those bloody-poo diapers and comforting a fussy baby.

When my alarm makes that hateful noise at 5:30 Saturday morning I have had less than 2 hours of sleep.  But I made a commitment to BSF leadership and I leave for our leader meetings at 6:30. On the way I sing praise songs - they wake me up, cheer me up, and lift Him up. God, give me the endurance to make it through another day.  The meeting is a blessing and I'm grateful for the role BSF plays in my life. I am, however, very tired when I get home.

Thankfully there are no doctor visits over the weekend.  I've got to squeeze schoolwork (with the kids), chores, grocery shopping, laundry, dishes, Julia's physical therapy exercises, church, and some volunteer commitments into 2 days. I DID manage to have a date night dinner with my hubby - he deserved it after another 70 - hour workweek (outside, overnights, in subzero weather - and yes, he IS my hero)!

Monday means another doctor visit, this one is for Taylor.  It's been over 2 years since her last evaluation and it needs to be done every couple years to track progress and adjust the diagnosis - and because the State makes us in order to have TEFRA disability medical insurance. 

Since this post is long enough already, I'll give each kid their own post.  Her parent conference is Monday, and while I doubt little has changed, I'll tell you more about Taylor next week. 

Tuesday finds me back at Children's Hospital in Minneapolis - this time with only Taylor and Bruce.  Her asthma has been very poorly controlled for over a year now and we have been seeing the pulmonologist monthly.  This child is on THIRTEEN prescription meds - and 10 of them are related to her asthma and breathing troubles. She has been in the "red zone" daily for 3 months now with no improvement.  

The breathing test takes TWO HOURS because she continues to fail after each neb treatment. While I am a master of multitasking tasking and letting no time go to waste, I accomplish very little when I've got my active and curious baby with me (who, by the end of the 3 hour appointment is also a very tired and cranky baby). Next month we'll be back to see if the adjustments in meds caused improvement - and she gets to have a sinus CT as well.  Gee, yippee.

As long as I've got Taylor with to be my helper, and Dean's off at preschool, I hit up Target. It's tough pushing a cart and holding a sleeping baby, so I set him IN the cart - and he napped for an hour! He has almost NEVER slept outside of someone's arms!! I've put off shopping too long, and needed larger items (litter, dog food, toilet paper, diapers) so a 2nd cart was already part of the plan. But since Bruce stole one of those carts, a THIRD was needed.

Yes, I pushed and pulled 2 carts while my 9 year old followed behind me with a 3rd cart. Yes, checkout was exhausting (especially since I'm a big time couponer). And yes, bringing all of it in my front door (since the side door is broken) in the freezing cold & snow, and getting it all put away does take ALL the rest I've got to give. So, yes, I did lose my temper and end up yelling at the kids that night. So. Much. Whining. Fighting, crying, tantrums, meltdowns, messes, messes, messes, repeating myself, shouting... sometimes Mama wants to cry and shout too.

I skipped my mommy-baby class for the first time ever, in favor of a nap. There was nothing else I wanted more in the whole world at that moment. I run up to Dean's school to drop off fliers (I'm the Box Tops/Soup Labels person) and the clinic calls (Alexander Center is who diagnoses and treats my special needs children). They'll cancel the appointment (the one that took 6 months to schedule) unless I obtain current school IEPs and evals for tomorrow. What?! I DID that!

I'm grateful I was already at the school and that Dean's special ed teacher took the extra time to print all the forms and put her notes and phone number on them. It truly takes a village!


My day ends like this (a photo from a different night, but the same scenario).  I've got tons to do and both my boys wanted their mama. I love these snuggles and have no objection to sharing my lap while I work like a madwoman on the computer.

Wednesday takes an exceptional amount of patience and endurance to push through. I'm double booked, so Dan needs to bring Julia to her OT and PT in the morning.  He worked all night, slept for 90 minutes (maybe less), and then took care of Julia's therapy appointments. I'm glad to hear she is showing some improvement, as they have been working really aggressively with her, but I'm overwhelmed by the homework this week. When will we find the time to do all these extra activities?!

Meanwhile I've got the other 3 kiddos at a different clinic in a way different direction from home. Dean has been in a special ed preschool since he was 2 with a diagnosis of developmental delays. I didn't realize he was "not normal" because AUTISM IS OUR NORMAL. His teachers told me it was time to get him evaluated and labeled - and get help.  Our pediatrician said the same. If I'm honest I knew it awhile ago but have been in denial.

For the first 2 1/2 hours the kids do a fabulous job of playing in the Developmental Pediatrician's office while I answer questions and she observes Dean. Not wanting to quit playing and clean up the blocks I use my go-to method for getting Dean to cooperate: "Which color blocks do we pick up first?" Of course it's purple, because we'll be cleaning them up in rainbow order and purple is at the bottom of the rainbow. It works but apparently is relevant to the doctor and she scribbles down some more notes. What, not all 4 year old's obsess about rainbow order in all things?

There's an 90 minute break for lunch which is great because Bruce will not take his nap when there is so much to look at! Since I want to stay IN the van - to get Bruce to sleep and because it's bleeping cold - we opt for a picnic in the car! Taylor spread out my Thirty-One About Town Blanket (yes, I had to make that plug!!) on the floor (we long ago removed the seat for extra space and to travel with our dog).  I treated them to curly fries and a root beer from Arby's to go with their Lunchables and parked in their lot. Making Fun from Mundane.

The last couple hours was a bit more work than the first half - we're left behind in the waiting room and Bruce can get into EVERYTHING - pulling the phone off the table, unplugging the water fountain, removing the books from the bookshelf and crawling onto the shelf... I've got a good hour of forms to complete too. I'm grateful Taylor is having a good day and chooses to help occupy the baby.

Ironically my phone rang - Park Nicollet was reminding me of Taylor's appointment this coming Monday.  Everyone in the waiting room was wondering why the room was echoing - until we saw that the lady at the desk was the one making the call and I was the recipient.  So, no lie, I get a reminder call to come to that clinic on Monday, and I am IN that clinic right now. The gal next to me had a good laugh!

A few more hours of testing tomorrow morning and in the afternoon I will receive the results and treatment plan. I've got most of my BSF lesson still to do and haven't had the girls even touch a schoolbook today. (Side note - public school ended up being cancelled the following day due to weather and I felt much better for missing a day of homeschool.)

I've had soda today in an effort to keep me awake, curly fries and grapes for lunch, and it's midnight and I'm scarfing down a bowl of oatmeal.  No wonder I'm fat and can't lose the weight. I know how frumpy I look.  But when Survival is the name of the game, self-care doesn't make the Top 10. I had planned to go running tonight but the (brand new) dishwasher broke and flooded the kitchen floor. I lost another hour of precious time to sorting out that disaster. 

At times I wonder why God placed me on this journey; what am I supposed to learn or accomplish as a result? What does He intend to teach me in these challenges? Obviously whatever it is, I must not be getting the hint, because the hits are constant.

I mean, 4 kids with health issues, plus chronic conditions for my husband and myself. Really? Not one, not two, but THREE children with autism. Really? Not only autism but for fun let's add in food allergies, asthma, heart defects, Crohn's, failure to thrive, osteoporosis, high cholesterol, low weight, precocious puberty, sleep apnea, ADHD, anxiety, dyslexia, dysgraphia, reflux, ODD, OCD, developmental delays, SPD, speech disorder, etc. etc. and on and on and on...

Lord, forgive me for making this all about me! Perhaps He does indeed have something to teach me in this life, but it occurs to me these are not just issues that impact me.  Others ARE involved. How selfish I am!

What's this post even about? Me. My brain is fried at this point but I feel better after venting. I'm desperate for some camaraderie, someone who knows how hard this is and putting it all out there on the internet opens me up to literally a world of people. I covet your prayers - and your experience, if you've got it. Tell me YOUR story. Tell me one day I'll miss all this and to cherish it. Tell me it's all worth it. Tell me God loves me and has a plan for me. Tell me it's okay to say "this sucks" every once in awhile.