Monday, May 19, 2014

Slowly but Surely

Sorry I've been sporatic lately with my posts. Sadly, life has taken over a bit in the Nielson household (once again...) and I haven't really had time to formulate thoughts that I've been wanting to share.

I've been having contractions for the last 2-3 weeks, and last week at my appointment, the doc put me on bed rest (because bed rest is TOTALLY possible with two toddlers, one of whom has little to no communication skills and the other whom has hit the "terrible twos" early)

When you add to that the fact that it has been 6 months since Faith's last round of testings so they have to update everything to keep her services on point, let's just say things have been interesting.

The testing process has been easier this time, but its frustrating that it seems like people still feel like I need to be treated with "kid gloves" when it comes to saying that Faith hasn't made the kind of progress they would have hoped.

I am well aware...its okay to say that she is still "severely delayed" doesn't hurt my feelings or make me mad or sad...

You see, using the sage advice of our speech therapist in Wyoming, I am content. (Baby steps are still steps...)

No- she may not be using simple words like "drink/juice", "snack", or even calling me mamma or her dad "daddy", but I can look back to where we were 6 months ago and see that things ARE better...

To someone on the outside looking in, I can see how it would be nerve wracking to have to tell someone that the tests aren't showing much change. Everyone wants a miracle. Everyone wants Faith to wake up one morning and magically decide to talk.  I will openly admit to having those thoughts some days (when things are really hard and I'm at the end of my rope.) but miracles don't have to be HUGE or completely life altering all the time.

What has changed in 6 months?

Faith is  making better eye contact. We still have our struggles, but she has started to figure out that her non-verbal cues aren't going to cut it and that she has to look at me while making whatever sound signifies what she wants in order to be successful in getting it. She has the capacity to learn and adapt- that is HUGE! I've seen and read of parents that aren't even sure about that when it comes to their kids on the spectrum. How blessed are we to know that she can pick up on a behavior and, after prompting (sometimes lots and lots of prompting) successfully do what is required.

Faith engages mom and dad to play. We will be sitting on the couch and the next thing we know there are blocks in our lap, or a pen and pad for drawing.  We have to get her to look at us and make some kind of sound to get what she wants (which can be frustrating) but she is showing she WANTS us to be a part of her world. She wants to let us in. She wants to be around us. Considering that 6 months ago, I couldn't get her to look at me, let alone get her to play with me doing something she enjoys, this too is a miraculous shift.

She lets me hug her. Sure, she wiggles her way out of my arms sometimes, but considering that 6 months ago any and all physical contact had to be initiated by her or we'd have a melt down of epic proportions, we have made leaps and bounds of strides in the right direction. There is nothing more heartbreaking than not being able to physically show your child how much you love them and to not have them seem to want to physically show you any affection.  I can't tell you how many times a week I have to choke back tears because Faith has crawled into my lap, given me a kiss, and just laid there, allowing herself to "be" with me. 6 months ago, I wondered if that would ever happen.

She is slowly learning to engage her sister.  There are only one or two games that she has made up that she will play with her.One involves finding one of daddy's church ties, handing Phillie one end and taking turns dragging each other across the room. The OT says she likely does this because she needs the deep sensory input that the dragging sensation brings and she knows that Phillie will be able to drag her lightly enough that it won't hurt her.... but at least she is bringing Phillie into her world.

A few weeks ago, I happened upon this scene in the living room after cleaning up breakfast.

I admit to sobbing like a baby as I took this picture.  They happily sat watching Frozen just like this for nearly 30 minutes. You could see Faith wasn't 100% comfortable because she was "flicking" her hands the whole time, but she didn't move, she didn't try to push her sister off. She let Phillie lay in her lap and show her affection.

Yes, she may still be non-verbal...she may still not know how to match pictures when prompted...she may not know how to play with ALL of the toys kids her age should know how to play with... but what she is slowly learning and figuring out are incredible!

I definitely have my days...days when I pray and wish and pray some more that she will just learn to talk already, that she will just eat normally, that she would be able to make friends and play with her cousins and sister...

but on those days, I try to remember where we've been.

The journey of life isn't just about the starting point and the place you'd like to end up, its about enjoying the stops along the way- even when they're tough and you want to keep moving to the end destination instead of stopping.

Right now, I'm going to embrace this "stop" on our route to seeing Faith's true potential. Yes, my child is Autistic. Yes, she has severe delays,but she has potential and I have faith that as we travel together I will be directed along the paths I need to go to help her reach her best "end goal point" in this life...

and ultimately, that is what this life is about. We all have potential, we all have an optimal "end destination."

I am blessed to know that even if that earthly "ending destination" isn't where I saw Faith when I first held her in my arms when she was 8 hours old, potential NEVER ends. Her delays and disabilities will not last forever. She will be blessed with a perfect body at the coming of our Savior. She will meet the endless potential she has...and she will have more compassion and knowledge than I think any of us can understand in this life.

She may not be the world's version of "perfect", but to her Father in Heaven, she is perfect just the way she is. She has been given the opportunity to learn lessons that few of us will be able to fathom until the next life...and I have been given the opportunity to learn from her. How lucky am I?

Yes, she is still severely delayed. Yes, she isn't like other 3 year old kids...but she is MY 3 year old. She is a part of my journey. She is teaching me more than I ever imagined I would learn in this life.

As long as I'm doing all I can do, the Lord will make up the difference.

He has been all along. Slowly but surely.

Hugs and Loves until next time, darlings!

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