Friday, May 23, 2014

Love is an Open Door

I walked into my OB's office to sit down for what will now be a weekly ritual of waiting once a week for an ultrasound and a quick visit to hear "Everything is good." until the baby is born in a few weeks.

This week's appointment was earlier than my appointments normally are and what I walked into seemed somewhat shocking....I checked in, sat down and started doing a little people watching and realized that the faces I was looking at were MUCH my opinion too young.  The waiting room as a hodge podge of young mothers around my age and teenage girls either accompanied by their mother, their baby daddy, or both.

Of course, since people watching is one of my favorite things to do, I sat...I observed and I pondered what I was witnessing.

The girls all appeared to be clean cut, wholesome cheerleader types. They were dressed well, their hair perfectly coiffed. Mothers fussed next to them with paperwork while the girls rolled their eyes and rubbed their growing bellys...but the boys were the most shocking sight...

Greasy, oily ballcap covered hair, jeans and t-shirts with holes... in many cases making fun of largely pregnant women waddle back and forth from the check in desk....

Hardly Prince Charming.

As I watched one girl chastise her "baby daddy" for not showering after whatever athletic practice he'd come from, and listened to her worry out loud about how her mother would react when she got there later when she got off work before the appointment, I wondered to myself:

"Oh, sweetheart! WHY?!? Why would you let THAT touch you in the most intimate ways that you can be touched?" What made these greasy, disgusting, OBVIOUSLY immature goofballs so appealing?

I then began to ruminate on a conversation I had with my husband a few weeks ago.

We were watching Frozen for the umpteenth time with our girls (we've probably watched it at least once a day since it came out on video, but quite frankly, my husband and I find a new layer to discuss every time we watch it.)

My favorite song came on. "Love is an Open Door".

Jeff remarked, "You know, its rather ironic that that saddest song in this whole movie has the peppiest beat."

I was taken a back..."This song is NOT sad! How could you even think that?" I asked.

He sat back and smirked a bit (that smirk that tells me he is happy to have a deep conversation about something...a smirk I love and find awfully attractive.)

"The words aren't inherently sad." He said. "This song is exactly right. Love SHOULD be an open door." He paused for a minute and then looked at me, "This is the saddest song in the whole movie because its true and the way it should be, but one of them is lying through their teeth as they sing it."

Clever, clever Disney.

I spent years in college, listening to single friends complain about how Disney has given them a false sense of what romance should be...there have been studies and papers written trying to demonstrate the harmful effects of "Prince Charming Syndrome."

Don't get me wrong. I believe it exists in some ways...but that is a thought for another day.

What does Disney do? They write a heroine character who deals with what EVERY girl is faced with at one point in her life...

A frog that turns out to be a frog... a guy that tells you everything he knows you WANT to hear in order to get everything he WANTS before disposing of you.

Anna spends the whole movie insisting that what she has is "true love", ignoring the concerns of family (Elsa) and friends (Christoff) when the reality is that she hasn't really had a chance to assess the character of her "Prince Charming" to be sure he's everything he should be to make her happy and that she is everything that he needs and not just a notch on his belt... She decides to jump in and give it her all because she is driven by her desire to have companionship and be loved...She wants SOMETHING,ANYTHING to be different from the life she is living. She sees love as her ticket out.

What makes the fake "Prince Charming"with his pretty words so appealing? The idea of getting something different...the idea of finally being SEEN...

I see Facebook memes all the time about what we should be "teaching" our daughters.While that advice is all well and good...HOW?

Disney shows that answer too... Anna is deprived of TIME. She is left to her own devices because she seems happy and content, even though deep down she is miserable.

Yes, you can tell your daughter to wait for a man that truly respects her, you can tell her that she is worth more, but what are you doing to PROVE IT?

Are you giving her your time or are you depending on "things" to make up for the lack of time you have with her?  Do you tell her she is beautiful and valued every day or do you belittle her and bring up EVERY TINY MISTAKE she makes?  Do you SHOW her that you value her by asking what in her life is important to her and supporting her- not just you SHOW UP?  Even if its the art fair, science fair, making it to the school play to watch her (even if she is just in the chorus or only painted sets), going to the football game to watch her cheer?  It doesn't take much to reorganize your priorities... it may seem like a lot, and it may be a pain in the butt...but did you become a parent to just open your wallet every time they want something or to nurture a new generation with guidance- to help them navigate life and avoid the mistakes that you made?

Do you know her friends? Have you bothered to meet the parents of her friends? Do you show you care by setting boundaries? (Yes, giving a curfew and being awake to wait for her to get home is a way that you can show her how valuable she is to you... who knows, she  may even tell you about her date, the party, or the school function she just got back from if you'd give her a chance...)

Elsa spent her days in a room,locked away from her sister. She thought that avoiding time with her to work on herself was the  best course of action, but it ultimately almost led to her sister's destruction.

We need to TEACH our daughters that they are important, valuable, special, and loved regardless of the tiny mistakes they make, but we need to SHOW them every day...if we SHOW them, they will be able to FEEL it. Once they feel it from us, from their siblings, they will be able to model that in the other relationships in their lives. They will be able to recognize an unhealthy, toxic relationship, they will be able to have better self esteem because they won't be relying on JUST the attitudes of their peers to make them feel valued and important.

Once they can do this- a fake "Prince Charming"...the "Frogs" that lie through their teeth in order to get what they want will be obvious to her. She won't waste her time (and if she does, she won't waste it for long) because she won't equate love with popularity or sex (like society tells her she should)...

I won't lie. I wanted to be popular in school. It was hard to watch my older sister, who seemed perfect, have it "all". She got asked to every date dance, she had boyfriends... I, on the other hand, didn't get asked on my first date until commencement my senior year, and even then, it was just a friend who asked because he didn't want me to be home alone...

Yes, I relented in my "not popular status"...but you know what kept me out of trouble? (believe me, I could have found it if I wanted to...) I had a mom who was there for EVERYTHING. She was always available to listen to me...even if she was in the middle of something important, she would drop everything to listen to my teenage woes. She would REALLY listen, she would give valuable advice or help me assess situations so that I could change something.

When I was little, before his death, my real dad took his weekends to take us out on "father daughter dates" and "father son dates".... Sometimes we did things he wanted to do (like go to the driving range or golf course, but he always found a way to help us feel involved, special, and like he cared about our success and failure as much as he did his as he played his 18 holes or used his wood to drive a bucket of balls.) and other times, he would let us pick. He may have been busy, but once he was home from work, he was HOME. I can't tell you how many hours we spent snuggled up against him on the couch as he watched his favorite television show or how many hours he spent playing "cooking show" with us in the kitchen as he made our family meals... I never had to doubt that I was important to him. If he missed parent teacher conferences because of a work trip, he ALWAYS went to see the teacher on his own (even if mom had gone). He did everything he could to make up absences to us by giving us his time later to make up for it.

My step father would take time off of work to come to school plays, to come support us at cheerleading tournaments, speech and drama tournaments, choir concerts...He was always ready with a big hug if we'd had a bad day (he still is). He was a firm shoulder to cry on.

We didn't have everything we wanted...I have stories of times when my step dad was unemployed for MONTHS and we were down to the last pack of ramen in the food storage before he got another job... but through it all, we had everything we needed... I may not have worn name brand clothes, or fancy makeup from the counter at the mall...but EVERY MORNING my mom and dad would complement me. They would specifically tell me something that made me beautiful or radiant that day... because of this, I didn't feel so alone in my "unpopular" status... I knew that at the end of the school day I was going to go home to a sweet loving mother and father...that I had their support NO MATTER WHAT.  I made my fair share of mistakes, but they always made sure that the punishment fit the crime... they were fair and they helped me to see, amid the punishment, that I was BETTER than that through gentle loving ways. I knew where my boundaries were, I knew that I would disappoint them if I crossed that line, but I knew that they would never be too harsh or unforgiving.

In the end, Anna almost loses it all because she realizes almost too late that Hans isn't her Prince Charming...her mistake has been made and it seems as if there is no way to make it better. The damage is done and undoable...she finds hope in the love of a friend, but the ultimate saving grace comes through the love of family- through HER love for her family...she had known what true love was all along, she just wasn't able to see it... she had been blinded by years of solitude.

As I looked around my doctor's office, I quietly contemplated how sad it was that this room almost full of teenage girls wasn't the was a symptom.

May my daughters be able to learn from the story of Anna...May I as a PARENT be able to learn from the story of Anna...May they remember that a "Prince Charming" isn't the beat all end all of happily ever after...and may I remember that its my job to not only TEACH but SHOW through my actions what true love is so they can feel it every day of their they can reach their potential...and someday they will hopefully meet a real "Prince Charming" and be able to recognize it as they let their actions speak louder than their words.

Love is an OPEN door...Is yours locked or do you only leave it open a crack?  Leave it wide open. You never know what the person on the other side is truly missing out on until you start giving of yourself.

Hugs and loves until next time, darlings...and thanks, Disney, for the reminder.

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!

Thursday, May 8, 2014

What Ifs?


I know its been a while...Did you miss me?

Truth be told there have been a million things I've wanted to blog about but between the joys of pre-term labor and handling two toddlers, its been hard to find time to sit down and focus my thoughts, but after yesterday, I KNOW I need to sit down and focus my thoughts to work through some things...

Yesterday, we had a meeting with the Head Start Preschool coordinator for our school district about Faith's transition from Up to 3 to Head Start and all that it would entail.

To be perfectly honest, going into it, I had very few concerns or problems. I have been excited to think about the opportunity of Faith going to preschool and getting some extra help and therapy with other kids present...

But it just goes to show how naive I am sometimes.

Considering what we've told her, and where Faith's previous scores from 6 months ago are (and considering that there hasn't been a considerable amount of change) the director said that she believes Faith will end up in the preschool and not doing therapy twice a week at one of the schools. That was fine, I was expecting her to say that...and then she mentioned the school bus...

The realization suddenly hit me.

They would be expecting me to put my baby on a bus, let an aid strap her in to a harness or seat belt on the bus, and trust that she would get there and back safely...

The anxiety wells up just as much now as it did yesterday.

Considering Faith's tendency to bolt, considering that I rarely spend time away from her because no one really knows how to handle her, considering that time I spend away from her has always been at home with a relative watching...this seems like an almost laughable and insurmountable task.

It just hadn't dawned on me that I wouldn't BE THERE...

She will spend 2-4 days a week from 9- noon away from me, alone... I have to trust a teacher, some aids, and a speech therapist to watch her while managing other kids with disabilities similar to hers or worse than hers...

We had taken a little tour and walked through an actual class in session. One little boy, completely immobile, was on a carpet with a teacher and the speech therapist working, and there were two aids with a group of about 8 kids sitting at a table...and the door was wide open (don't get me wrong,other teachers had their doors closed, but this one was WIDE OPEN)...

The thought of me not being there to watch her,to be sure she stays in the room, to be sure she stays in her seat and is staying on TERRIFIES me...

What if the teacher leaves the door open and she slips away? What if she won't sit and do what is expected of her- she doesn't follow directions and we've been working really hard on getting her to meet the same expectations that other kids have to meet when we're in group settings, but we're SO FAR from being to the point where we can get her to without a struggle...

My baby will be all by herself, I won't be there to figure out how to end the melt down, I won't be there to praise her and help her... I haven't even been able to leave her alone in nursery without her being brought to me in melt down mode (with the exception being in our ward in Wyoming, and I believe that the only reason I was able to leave her was because I spent 3 months in there with her, getting her used to everyone)

I keep trying to remind myself that this will be good for her. She needs this experience. She needs to learn how to follow instructions from someone other than me, she needs to learn how to work better with other kids and socialize...

but all the "what ifs"and looking at where she is now, I sit here wondering how it will be possible for this to be successful....

I was having contractions last night and didn't get much sleep. All the worst case scenarios ran through my mind like a marathon of anxiety (since I really had nothing better to do than be worried...) I prayed and prayed and prayed over and over and over for her safety, for my anxiety to let up about it, for me to stop harping on it...

In the daughter is aptly named. Her whole life has been an exercise in faith for me.

I know that faith conquers fear.

As the summer months pass, as we move forward and start the necessary testing for Head Start, I need to continue to pray that my faith will grow, that I will be able to see the baby steps forward that will start to put my mind at ease about sending her all by herself somewhere, that I will be able to develop faith in the teachers, aids, and therapists there to protect her from the world (and sometimes from herself) while teaching her the skills she so desperately needs.

I can't give her everything. I can't teach her everything. I know I need to let go and trust- trust that God will protect her, trust the education of these awesome special educators that have devoted their careers to kids like Faith, and trust that Faith will conquer her obstacles and be successful.

I know that, in the end, the anxiety will likely still be there. New and unknown journeys are always a little scary...but I am holding onto the hope that as I pray for the light to show the way, I will be able see little glimpses of how we're being prepared for this big step. I will be able to have my hope turned to faith as I act daily to try to help prepare my sweet baby girl and myself for this impending journey.

I know I have a loving Father in Heaven who will help see us through. I know he tests us to make us stronger. This is just one more test...its probably harder on this mamma than it will be on my sweet girl, but only time will tell.

In the end, God will drag you kicking and screaming from one blessing to the next if he has to. I'd rather not kick and scream and enjoy the ride, so I will look for the blessing in this anxiety, I will look for the blessings that come as we make the preparations for Faith to start her preschool journey, and I will continue to pray and allow this anxiety to draw me closer to my Father in Heaven.

In the end, it will be a good thing, but excuse me while I quietly sob to myself thinking about all the "what ifs" for a little while...

Hugs and loves until next time, darlings.