Wednesday, November 20, 2013

Our Special Needs Journey:Part 4 - Sometimes I Just... Need Help

There are days I wish I had a MYOB sign. When I was a kid the "cool" phrase was MYOB - mind your own business. (Actually pretty sure the other kids on the bus said Beeswax.) I'd use it to smack the lady at the store today who commented that my son needed a winter coat.

Oh dear. It's like 50 degrees, he's got a hat and a sweatshirt on, and I'm holding him in a blanket. Since it is unsafe to put them in their carseats in huge, puffy winter gear (the straps need to touch his main clothing) it is simply faster to run inside with a blanket then stand in the cold putting a coat on. Trust me, I'm OBSESSED with safety, I know what I'm talking about here. I didn't bother explaining myself. I just smiled while I pictured myself hitting her with my MYOB sign. Chuckle.

Another sign I need? "You try raising 3 children with autism AND an infant while living in chronic pain on a limited budget with no help and then come back and judge me afterwards."  I actually think I'm doing a decent job most days.  First, I ask the Lord to strengthen and fill me daily - and for supernatural doses of patience, wisdom, discernment, empathy, energy, and love.

Next, I care enough (and love my kids enough) to spend time and money to meet with a psychologist that specializes in special needs children.  We discuss our family struggles and she uses her expertise to help Dan & me devise a parenting solution or tactic for each child and each situation. Then I calmly follow the plan.

I took all 4 children to a dollar store this morning to find treasures for our Operation Christmas Child boxes.  The aisles are littered with boxes of products to stock and my 9 month old is in the seat of the shopping cart. When my 4 year old runs away I can't dart after him at lightening speed - if I abandon a baby that adorable someone may take him home!

As each of the 3 children become overstimulated by the environment and are increasingly difficult and disobedient, I remain calm.  "Shh" I say, in a very chillax voice (that is the word I am gonna use, even if it's made up).  I hold Dean's hand and try to distract him - "What would you like to pick out for the little boy's present?" or "What was your favorite present ever?"  The girls start bickering and provoke Dean as well.

When I would not cave and allow him to open some candy he begins to give a royal tantrum. I continue to speak calmly and lovingly and do not give in. "Some people can't keep their kids in order," an old lady "mumbles" (read: said loudly).  A store employee says I cannot allow my son to run down the aisles. Yes, I know that. Do you not see me trying to catch him and getting stuck by one of your zillions of messy boxes strewn about?!

I am not going to give my son sugar, rewarding his tantrum and perpetuating the cycle, just to make a stranger more comfortable while they shop.  It's the bleeping dollar store, not Neiman Marcus!

Later, while gathering groceries, toilet paper, and prescriptions from Target I receive a call from the Preschool Nurse. Dean has peed his pants while getting on the bus and refused to get off the bus to put clean pants on.  Since he has not used the toilet once in like 3 or 4 days (and based on the stench of the urine) she thinks he has a urinary infection.

Scheduling a doctor appointment is like solving a Sudoku puzzle - I've already got labs for Julia at 8 am and OT at 10, he heads to preschool at 12:30... While making the call and nursing the baby Dean is, as usual, up to creative trouble. And peeing his pants again.

Julia has been redirected to complete her schoolwork at least a dozen times in 2 hours. She got up to put the laundry in (Dean's coat and carseat cover smelled like pee and needed to be washed stat) but must've gotten distracted along the way b/c 3 hours later I found the laundry sitting by the kitchen door. Eventually I had to physically go with her to the laundry room and do it with her. Which would be fine but she is 12 and it's every. single. thing. We have picture boards and peg boards with tasks hanging on them and basically every tactic known to man but she cannot focus, cannot remember cannot follow through.

She asks what "daily" means and I ask her what she thinks it might mean.  Her response? "Something you do every once in awhile." Really? I'm thinking clearly homeschool is a failure and she needs to go to public school now (epic mom fail). Taylor chimes in "Something I do all day? Or everyday?"

My affirmation daily does, in fact, mean every day sets Julia off.  She cries. Yes she does often lack common sense, but I certainly didn't TELL her that. No shaming was involved. Yet here she is crying. On the way out the door to go to the library she puts her sneakers on and attempts to tie a shoe before taking it off and throwing it.

I tell her I know it is hard for her to make her fingers work on things that small and it is okay and a meltdown is avoided.  Well, from her. Meanwhile Taylor is holding the baby and yelling in an exasperated tone "What Baby Bruce? Why are you crying?!"  I took him from her and said she seems tired, time to do her nighttime routine.

Oh Heaven help me you'd think I asked her to bathe in acid. Getting frustrated with a baby is proof you are tired, I explain.  She stomps off crying LOUDLY.  She comes back in a few minutes in pajamas and sits by Dean. He screams at her for taking his book and she yells back.  I tell, very calmly, to let go of the book and go to bed. She covers her ears, falls to the floor and screams "too much noise!"

I hug her, squeezing tight to calm her. To show her I care and it is okay to get frustrated. Yelling and time outs won't put an end to her melt down, so I try to meet her where she is at. We decide that she will get out her "angries" by doing wall push ups and making 1 loud, quick scream into a pillow. Crisis averted.

It's hard to always predict what will set her off.  Usually sensory related - especially sounds. So Dean's penchant for shouting does not float well with her and it sets her off in loud, and incredibly annoying sobs. Although Bruce is a happy baby but still cries at times, as babies do. Taylor covers her ears and begins to make a weird crying-type sound.  It takes about 15 minutes to calm her down and bring her back to task.

Now I have a tired, teething baby fussing at me and clawing at my shirt to gain access to a boob. I try to give him a new medicine (orally - 2 tsp!!) which he, of course, proceeds to spit out all over resulting in a sticky mess.  We both need to be washed up but the bathtub doesn't drain, so I have to empty it one bucket at a time into the toilet. So Dean is off getting into trouble again (dumped out a bottle of dish soap, put cornmeal in the turtle tank...) and the girls are playing, refusing to get ready for bed or do their chores.

Bruce has an allergic reaction to the meds and while I am on the phone with the doctor Dean takes the opportunity to unravel an entire roll of paper towels into the remaining unemptied bath water (I can never quite get it all with a bucket).  As I'm changing a massively poopy diaper he drops my new iphone into the water as well.  His sisters were supposed to be watching him but they have lost focus as usual and are digging in the fridge for snacks.

As I write this, with a baby on my shoulder, and a to-do list 8 miles long (but this is therapuetic and I need it), Dean is awake.  He's 4. It's 12:49 am. I need to be up at 6 to get ready for the doctor. I gave him a 5mg melatonin chewable, a bath (yes, with that whole stupid broken drain thing), stories, prayer, and his head massage.  Still, awake. Crying that he can't sleep and wants to play. I walk him back to his room over and over and try to help him calm his body but he refuses to sleep.

Lord, I just need a little help here. My head hurts. We're losing our house. I just tripped over another basket of laundry. I'm over-committed and just cannot get it all done. My poor hubby works 70+ hour weeks (evenings, overnights, and weekends).  I'm trying to get PCA services through the county but the paperwork process is impossible.  I am broken hearted because my children deserve so much better than me.

I love them. I love You, Lord. Such undeserved blessings you pour down on me. But send help. I cannot do this alone. Okay, first of all I know I CAN do what I HAVE to do but I'm not sure I'm doing it very WELL.  Second, I know I am never alone, You are always with me. It doesn't feel like it today.  Today feels kinda lonely.

I think the sign I really need says "God isn't finished with your story yet - have faith."  And it's written backwards so I can see it when I look in the mirror. Well, if I ever get up the courage to look in the mirror (it is a scary sight these days).