Wednesday, February 19, 2014

Shine on

Today was a trying day...

A day where I found myself unable to hold it together...

A day where I had to excuse myself from my screaming, raging, 2 year old and go into the bathroom to cry for 10 or so minutes in order to keep composure and a cool head.

Our Little Diva was definitely "on one" today, for lack of a better phrase. Lately, I've noticed that she isn't sleeping at night. I will go into her room to attend to her weepy little sister (we're getting the rest of our teeth in) and she is just sitting up in her bed, wide awake, staring back at me.

Last night, I decided to check to see if she was going back to sleep after I put her back down when I was finished with the teething monster in the bed next to her...sure enough, I'd wait 20 or so minutes and go back in and, every time I would check, there she was, sitting up, quietly, wide awake just waiting for the sun.  I'm not sure how much sleep she is getting, but it definitely is disconcerting. She is so little that the doctors don't recommend the "normal" course of action for sleep aiding Autistic kids (things like Melatonin or prescribed sleep pills).

Today we seemed to have full on melt downs about everything under the sun. I was bitten, pinched, kicked and slapped in the face more times than I could count...and poor Phillie ended up with a bloody nose after being on the receiving end of Faith's massive melt down tantrum for one reason or another (to be honest, I really couldn't tell you what the majority of them were about. She was incredibly unhappy, over stimulated, and anything that didn't go the way she wanted to would set her off)

Its days like today that I cling to those short lived moments of "normal"...Faith dancing the "hot dog" dance along with Mickey and the gang at the end of Mickey Mouse Clubhouse, Faith laughing hysterically as Winnie the Pooh climbs up the honey tree singing about the "rumbly in his tumbly" and his subsequent fall after spitting bees out of his mouth like bullets...these are the things that get me through. These are the things that remind me that my sweet little girl does exist most of the time. I am able to try to think of these things, or find ways to divert her attention long enough so that I can see that my sweet little girl is still in there, she is just having a REALLY rough day.

I was half tempted to cancel our session with our Autism Therapist today. She was so volatile, I was concerned that today's session would even be worth it.

In the end, I forced my tired and sore self through the session. I'm kind of glad I did.

Our Autism Therapist has never REALLY seen Faith in full on melt down be honest, I was beginning to wonder if they thought I was exaggerating when I would describe some of the tantrums we had...

The AT arrived right as Faith was waking up from a MUCH needed nap (she only slept for about 45 minutes, but it was a much needed 45 minute break, that is for sure)...and she got to experience Faith in the "melting down as I wake up mode".  She was absolutely perplexed to witness it first hand.  We finally calmed her enough to do a few therapy related things, but it didn't take much to set Faith off into tantrum mode.  Our AT is so amazing and patient with her. She laughed off the times that Faith would melt down because she touched her to try to tickle her or she took away something that Faith was overly focused on... I wish I could always be that amazing and patient...I'm working on it, but I'm definitely a work in progress.

In the end, the session was probably more productive for me than for Faith. I got some good advice about how to deal with her tendency to pick "catch all" signs and words (she picked up the word "go" in a recent speech therapy session, but unfortunately uses it EVERY TIME she wants anything...since she isn't using the word in the right context, it just furthers her confusion when it comes to communication and we kind of need to nip it in the bud.)  The AT said that I need to push her and wait for a sound other than the word "go" when we're working on communication (asking for items to be handed to her, more snacks, drinks, etc.) and continue to repeat the right word we want her to say after she makes a different sound, even if its just adding a syllable or different consonant sound...let's just say that didn't go over well with the Little Diva during her therapy session and finally our AT started to instruct me to hand over the item she was giving me the "go" for if she melted down for longer than 20 seconds (the LONGEST 20 second intervals I will ever live...I swear!)

At the end of our session, we talked about ways to help her be more active in nursery and to meet the same standards of the other kids in her class on Sunday. Our ward just called new nursery leaders, and while they are much more open to Faith's needs than the old ones (the old ones didn't even want me to come into the room and would bring Faith to me when she had a melt down, instructing me not to bring her back). Unfortunately, the new nursery leaders just don't really understand the complex needs that Faith has. They've already lost her a few times when she's been able to bolt from the room when parents come to pick up their kids early. We've started going to nursery again (they welcome our help with her) after we teach our class, and while I am grateful that they try to treat Faith like any of the other kids in the room, its hard to watch them get frustrated with her when she doesn't respond to their simple commands like the other kids her age do, or to watch them be upset because she won't sit still on the floor mats for singing time or the lesson.  We got some good suggestions from the AT for how to help her meed the demands that the rest of the kids have and for ways to approach Faith's needs with the nursery leaders so they can feel like they're in charge and we're just there to help be catalysts for success at getting Faith to actively participate and behave like she should.

Before she left we also discussed the AT finding ways to help us help Faith visualize "waiting time" if we can't do something she wants right away (like going outside to play or getting her a sippy) to hopefully cut down on the tantrums and melt downs. We've been dealing with a lot of "I want it now" type situations where we are either still trying to figure out what she wants or we know what she wants, but it can't be done or given to her right away. She says she has some things we can do that will help and she will have that ready for our next session. While today's session wasn't perfect, it was somewhat fruitful, and for that, I'm grateful.

To have a day like today, with melt down after melt down, in the midst of our impending move has definitely NOT been the most fun thing I've experienced (to say the least) but I will say I am grateful for days like is days like today that remind me that I need to be even more present for those little moments of "normal" so I have more to cling to...days like today remind me to count my blessings...days like today remind me that its okay to ask for advice and help from people and the resources I've been given...and its days like today that give me opportunities to learn more so I can be a better advocate for Faith in the days ahead.

I should add how grateful I am for  THIS little person on days like today:
It was almost like my sweet Cupcake could sense that things weren't going to change with Faith any time soon. This poor sweetie has been running a fever and miserable for the last few days and today she was a perfect angel.  She even found ways to break me from the stress of the day being her usual goofball self.

She has discovered how to make "air kisses" and at the time I needed them most, she would make eye contact with me and send me a few, with sweet little giggles as I'd send them back.  I put Faith down for a nap on her own and sweet Phillie quietly sat with me and waited for her own naptime. We played games with blocks and puzzles, played the piano, and finally, she snuggled up next to me on the couch to watch Ice Age. She leaned over and laid down and I began to scratch her back. She looked up at me and said "Yuv you" and quietly let me continue to tickle and scratch her back...before I knew it, I looked over and this is how I found her...out like a light. Oh so happy to just be asleep on the couch (even though she really would prefer her bed.)  She finally did wake up about 20 minutes later and cried to go to her bed. I scooped her up, laid her in her bed, and she quietly fell back to time for Faith to wake up screaming so I could get her ready for therapy LOL...Phillie slept the whole session and happily went into her daddy's arms when he went to wake her up so we could go to the store.

I am so grateful for Phillie. Even when sissy pushes her, slaps her, and gives her bloody noses, she never gives up. She tries to play with her and show her love.

The only thing that calmed me when I looked down at a 2 month old Faith a little over 2 years ago, realizing that Phillie was on the way was thinking that there had to be a greater purpose for her VERY unplanned arrival in our home...and that purpose has been shown to me time and time again. I needed Phillie to remind me that I'm doing an okay job on the days that I feel like the worst mother on the planet...Faith needed Phillie so she could have a friend with undying love and devotion...WE needed Phillie so we could notice the problems Faith was having and get her the help she needed.  Phillie is patient, Phillie is kind, Phillie is a complete goofball...Phillie is perfectly Phillie and content to wait her turn while we deal with the crazy ebbs and flows of life with her older sister as we work out the best ways to help her.

My biggest fear is that Phillie will not know how loved and appreciated she is... I pray every day for strength and the ability to be the mom that she needs so that she never doubts how desperately she is needed, loved, and how grateful we are that she came to our family to fulfill her special purposes in this life.

God is good. He gives us what we need...and sends us WHO we need to make the what possible. Phillie is truly one of the most special, cherished gifts I have been given.  I pray that I can show her that every day.

Faith will teach me patience and strength, Phillie will teach me how to endure to the end well with hope.

Every day, I find new purposes for these girls in my life...the tough days are days that I have to cry in the bathroom, breathe, and remind myself to go out and look for the lesson I am needing to learn...but I always learn it, they draw it out of me, one way or another it happens.

We will forge ahead, I will make mistakes...and that is long as there is love, hope, and I do my best to endure it well with patience, no day will ever be a day where I decide its "the worst day ever"... there will only be days where I learn and become better. If the lessons of mortality were easily learned, life would be a very quick test indeed. We need time to be polished to perfection. A hunk of coal doesn't become a diamond overnight- it takes intense heat and pressure.

Its days like today that I am reminded that someday I will shine brighter than I ever could have imagined.

Hugs and Loves until next time, darlings.

1 comment:

Lisa said...

You are amazing. To keep seeing the good even in such hard days. To accept the lot you have been given. You inspire me to be a better Mom!