Right Now...

Today's one of those days where I just need to talk.

 

Talk because my heart aches.

 

Some days, my faith is stronger than others. Some days, I feel like a fighter. And then I have mornings like the morning of January 29, 2015 where my tears fall in to the water I'm washing my dishes in. I try and hide it. I don't want my three-year old to see me upset. Or my one-year old. Or anyone for that matter...

 

For some reason I feel like a lot of people equate crying, struggling with faith, and a broken heart as feeling like my daughter's life is over.

 

It's hard to share the frustrated and broken feelings with others because I always hear the same thing. "She's fine.. it's just an obstacle. She's going to be fine."

 

But sometimes what I want someone to say is:

 

It's alright to be afraid of the future, Alyssa. It's alright to be broken. It's alright to fall apart. It's alright to feel lost a times.. Confused.. Shattered.

 

My tears do not mean that I feel like all is lost in our world..

 

My tears mean that my heart hurts..

 

My heart hurts because of moments where our circumstances reveal the reality of our situation.

 

Last night was tough.

 

I cannot begin to explain how it feels to sit in a room with your family, have your three-year old act in a violent manner... So, you grab her hands and talk to her about how it wasn't kind, and she doesn't even look at you. Doesn't comprehend the words you are saying. Laughs.

 

I'm hurting because sometimes I have moments where fear creeps in. And we can sit here and say that I shouldn't let that happen.. that I have to have faith... but we all have our human side.. and God knows that.

 

 I have moments where I see that I can talk, talk, talk.... but more times than not, she doesn't understand what I am saying.

 

Those moments where I'm writing a blog and I can barely see what I'm typing because the tears don't stop.

 

As a parent, this is the most trying thing... to see a situation where you yourself cannot fix it. I pray. I seek the face of God. We have doctors appointments scheduled, but in this moment, I can't fix it.

 

I can't make my three-year old understand my words. And it tears me to pieces.

 

Today is the day where I talk to God with music blaring as I fold clothes and I cry words in to existence.

 

"God, please hear this Mommy's cry. I plead the blood over my daughter. I pray that she develops comprehension and can understand what I am saying to her. I ask that You heal her little body and mind. I pray for wholeness. Wrap Your arms around her and give peace...."

 

That's all I desire.

 

The future... the unknown..

 

It's something that is hard to turn off from your mind, especially when it's the future of your child you are talking about.

 

I have faith, please don't get me wrong. I trust the Lord, but sometimes I just need to be real. Sometimes I don't want to hear, "She's going to be fine" because sometimes I need to talk about......

 

 right now.

 

Right now, my heart is torn.

Right now, I speak words to my three-year old.. and there's no understanding in her eyes.

Right now, I need to talk.

Right now, I am struggling.

Right now, I am frustrated.

Right now, I am lost.

Right now, I am broken.

 

And all I can do is write.. 

and pray.

I am asking for all of your prayers too. There are reports that snow is headed our way Sunday/Monday and we need God to intervene... If snow does fall, please pray that the roads are in good conditions so we can make it safely to Nationwide. We need this appointment and if we do not make it Monday, they cannot fit us in for 4 weeks. Please just pray for God to take care of the weather and give us a safe trip there. I am so anxious for answers-- we appreciate your thoughts, prayers, support, and love! 

One More Week.

I think we always knew deep down that there were deeper obstacles than merely a speech delay, but it was difficult to put in to words. When people would make comments, I would say 'She's tired' or 'she's shy.' It was easier that way. Easier than thinking that GOD might have designed a different path for our lives. I don't know why I always covered up the meltdowns, the blank stares, the covering of the ears, the refusal to acknowledge a visitor. Maybe it was easier? Easier than thinking about reality. Easier than explaining 'I don't know why she does the things she does.' I think as a parent, you wear guilt around your neck. When the subject 'Why doesn't she talk' would come to the surface, my cheeks would turn red, my  eyes would fill with tears, and in the back of my  mind I would think, 'I don't know.... But maybe it's me.' Maybe I didn't teach enough. Did I spend enough time with her? Should I have read more books at bed time? Should I have talked to her more? Sang songs? What did I do wrong?

And everyone will tell you 'It isn't your fault...' But still, deep inside, you struggle with wondering if it really is. If you could have done something, changed something, fixed something.

I don't know if things have regressed or if we are on a decline or if I am just now noticing things, but this week was the toughest I/we have had in a long time.

After a great deal of research, I have learned that most of the struggles this week are normal. It's been a violent, meltdown kind of week.. And it breaks my heart... Because I don't know how to fix it right now. How to make it better. I try and take her in my arms, tuck her little body in as close to me as I can get it, kiss her forehead, rub her face, tell her it will be okay. Sometimes it works, sometimes it doesn't..

And I think that's the hardest part.

Some days, you just aren't enough to stop her from feeling lost... Scared... Confused.

Some days my cuddles don't work. Some days, soft spoken prayers don't soothe.

Some days are harder than others.

And I know that's okay-- it's parenting in a nut shell honestly whether your child is 8, 16, or almost 4 on the spectrum.

I always end my blogs with the thought-- autism doesn't define my baby. She is much greater than a diagnosis.

But, autism affects my daughter. It affects my life. It affects our family's life.

I am so anxious for February 2nd because I feel like even then we will have more answers. My hearts desire is to help her.. Learn the skills.. The patience.. The understanding.. To help her.

 One more week and we know more. One more week...

FEBRUARY 2nd

We spent the better half of our morning filling out 11 pages of paperwork for 'Nationwide Children's Hospital Center for Autism Spectrum Disorder.' I'll be honest. I've had the paperwork for almost a week and I have looked at it every morning and I think about filling it out, but as soon as I start and I read certain questions, I stop, put it down, and forget about it for the day. 

Our three-year old's evaluation is next Monday, so I knew it had to get done today so they could prepare for her appointment... But part of me resisted because it meant this was real. Now, please don't get me wrong. I feel like a lot of people think I think my daughter's life is over when I say things like that.. Or they think I think my life is over... Or we are lost. When I say things like 'it means this is real,' I strictly mean: I have a hard time accepting that we need some kind of intervention. It doesn't mean that I feel as though all is lost or that there is something wrong with her. It just means that it's hard to write your child's struggles on a piece of paper because I believe it's something no parent wants to ever admit.... She isn't less of a person.. She isn't destined for failure... She isn't going to live a life of disappointment.... 

She will live a life of purpose and greatness.. She just has to overcome a few other obstacles that some children don't even have to think about. 

The questions on the form stabbed me in the heart... Some of the things it asked if our three-year old did never even occurred to me until I read it out loud. 

Shows little interest in people around her. 

Shows little fear in getting hurt.

Upset by new people.

Eats things that are not edible.  

It started sinking in.. After 300 questions..

This was happening.

And it was scary and relieving all at the same time.

Scary because I don't know what the future brings. I know it brings peace and all good things from God, but I don't know what steps she/we will have to take to get there. 

Relieving because we finally have help. We finally have someone that is standing in the gap for us. Someone who has heard our prayers and is helping us help our daughter. 

They gave us a list of 300 words that we had to check what words our daughter says (randomly or purposefully.) 'Any letter of the alphabet' and 'any number' were under numbers 264 and 295. TV characters had one number of its own too..

And reality set in again.

I checked 5 numbers/words  out of 300.

Do you know what I would have given to be able to check 'love,' 'Mommy,' 'Daddy?' 

But I believe I will one day.

I believe one day I will wake up in the morning and hear 'Hi Mommy!' 

I believe I'll get a big hug when she comes home from school one day and an 'I love you' after she eats dinner (that's full of vegetables and fruits, not just chicken nuggets and pop tarts.)

And February 2nd starts our journey towards that. 

January 16, 2015 gave us a disgnosis and as I always say... That's it. A diagnosis. 

Our three-year old will change the world one day. She changes ours every day. She makes us see life from a different view point and I believe that can be just what some people need. 

The other day someone said to me 'I don't know how you do it.' And the answer is simple: We love her. There was never a question of 'How do we do this?' We do it. Is it always easy? Not in the slightest. Is she worth every bit of it? Without a doubt. 

The question is always raised 'What can I/we do' when talking to others and I touched on that in my last blog a bit about spending time with her and loving her (and my other two children) but I will say this:

You can also hold your own babies tighter. When your 6-year old is driving you crazy asking 'Why' constantly, squeeze him tight, and answer him as best you can. When your 4-year old is begging to read one more bed time story, but wants to read it to you this time, let her. Even if it's the 95th time you've heard it that night. 

I long for the day we hear our sweet baby talking our ear off in the car on a ride to town.

I long for the day when we are 45-minutes past bed time because she wants to read us one more bed time story. 

Our day is coming.

We get our daily dose of toddler conventions from our almost 2-year old.. And we will have our daily dose of preschool conversations from our 3 (almost 4) year old soon. . (for now, we cherish her nightly arm-rubs which is the only way she shows affection right now. We cherish her giggles when we sing a silly Yo-Gabba Gabba song. And we love her cuddles as she sleeps.) 

Thank you once again for letting this be my outlet.. A place for me to share my thoughts, hopes, aggravations, and more. 

What Can We Do?

Since our last blog post, I have received a lot of questions in regards to our 3-year old's Autism diagnosis. Many questions involving how she was diagnosed, what her symptoms were, etc. 

As silly as it sounds, we have only been on this autism journey for a few days... But one thing I have learned thanks to her doctor is this:

Our child has been diagnosed. And all I know about autism is: our child has been diagnosed. No two children are alike. The symptoms for our child may be completely different than the next child that walks in to the room. What we have realized is this: you are the parent and if you feel as though your child needs to see a doctor because something doesn't 'feel right,' follow your instincts. You know your child better than anyone. Please be an advocate for them. 

When we were at the doctor, they asked questions in which we would answer yes/no to. A few of them that we answered 'no' to were:

- Does your child make eye contact with you longer than two seconds?
- Does your child point to things with their index finger?
- When you point to things, does your child look at what you're pointing to?
- Does your child respond when you say his/her name?

We answered no to those questions above as well as other questions they asked. Some red flags that were raised were when we talked about her covering her ears when situations were stressful or noises were getting a bit louder. She doesn't communicate with us although she can say her ABCs and count to 100. She loves things to be in order- she lines up all of her toys and organizes her snacks in to color groups. She likes routine and order and there's nothing wrong with that in my book :)

Our life will change as the months pass us by, as will ours. We have more doctor appointments and more evaluations so we can learn more about Tayler and her diagnosis. I am more than ready to learn all I can to help her I'm every way I can. I've said it before and I'll say it again: my child has the diagnosis of Autism, but it will not define her. The diagnosis is strictly there to help us understand her perspective on this beautiful world and to help us help her. We see the frustration and embarrassment in her eyes at times and we refuse to let that be how she feels for the rest of her life. We will do what it takes to help her thrive and flourish for the rest of her life.

We have received so much love and support over the past few days. Our friends and family have been more than wonderful towards us.. And especially Tayler. We have received #teamtayler messages, comments, and phone calls. It means more to us than you could imagine. We appreciate every one of them from the bottom of our heart. Many have asked: 'What can we do?' And I will be honest. We aren't even sure what we will have to do at this point. We have more doctor appointments and evaluations to go before we understand even a fraction of where we are headed from here. One thing we do have on our agenda is: LOVE. Love all three of our babies, every day, all day. Tough times, good times. Love conquers everything. So when the question is asked 'What can I do?' I will say it's simple :). Tayler needs to be reminded every day how beautiful she is, how smart she is, how perfect she is. She needs people to spend time with her. She needs people that will try and understand her. She needs people that will love her. Stopping by to play with her (and our other two munchkins as well because they need that support just as much!) Watch an episode of 'Yo Gabba Gabba' with her. Recite the ABCs to her (you'll capture her attention in an instant.) She NEEDS people right now as does our 1-year old and 2-month old. They need love and time from those who care. Reminders that the people in this world are good people that love them unconditionally.


We love all of you so much and appreciate every single thing you have done for us over the past few days. Thank you for letting me use this as an outlet and healing mechanism. Xoxo to you all!

Answers..

We sat in a room for about 20 minutes waiting for the doctor to come in the room. It seemed like 2 hours. Holding our sweet girl, listening to her giggle at 'Yo Gabba Gabba' on her iPod. 

Once he arrived, we talked. Question after question protruded out of his mouth and as he kept asking questions, my heart started recognizing what was taking place. 

Does she make eye contact with you? 

I answered 'No.'

When you point at something across the room, does she look?

I answered 'No.'

Does she respond when you call her name?

I answered, 'No.'

Does she communicate with you at all?

I answered, 'No.'

I knew.

I knew in my heart what those questions meant.

We talked a bit more about her eating habits, her covering her ears.

I knew.

After the discussions and Tayler's evaluation, he sat down and we heard those words.

Your daughter is on the autism spectrum.

I think I knew long before this doctors appointment, but I needed a doctor to speak the words to me to fully comprehend... to fully feel it.

I instantly felt guilt because in those moments I felt relief. Does that make me a bad parent? That I had relief that we finally had answers. Relief that we finally had a diagnosis. Relief that we are finally headed in to a direction where we can finally seek out help.. 

Someone listened to us. 

Someone heard our silent tears.

Ethan and I hugged each other for a second, holding back tears. 

Not tears of regret or shame. Tears of relief. Tears of Hope. Tears of wanting to give her the best life possible. Tears that seek a support system. Tears that seek for her to be accepted for exactly who she is. Our spunky, happy, spinning, energetic three year old.

It's going to be a whirlwind of change over the next few months as we go to doctor appointments for more evaluations and to find out where on the spectrum she is.. How we help her.. And where we go from here.

I find myself swirling in a sea of emotions.... nerves.. anxiousness.. gratefulness... fear...

I look at my gorgeous child and thank God He gave her to us... And pray He gives us the wisdom and tools to do what is right for her.

Thank you for sharing in our journey... We are just two parents that adore their child and want the absolute best for her whole life... and we want her to always know how

LOVEd

she is.

Autism will not define my daughter and it will not hold her back from living a fulfilling life. We will not label her... We will simply learn what we have to to teach her on her level and see the world from her perspective. She has a brilliant view on this beautiful life. We will see life from her eyes and help her to flourish! Autism isn't my daughter. It's a diagnosis. And we need a diagnosis to learn how to teach her in the way she needs to be taught. She is a smart, beautiful, thriving young lady and having a diagnosis will only better our everyday life with her... Which I am forever grateful for!

She needs a support system now more than ever... And as selfish as it sounds, so do we. I hope my readers will be #teamtayler for the rest of her life and give her (and my other two sweet munchkins) the love they need and deserve.

Love you all!

Tomorrow...

Our 3-year old holds a huge part of my heart. She has this smile that is super contagious. She loves music. She loves numbers. She loves the alphabet (we are doing her 4th birthday in the ABCS!) She loves 'Yo Gabba Gabba' and Mickey Mouse. She is constantly playing with legos and blocks. And if it has anything to do with the outdoors, she's there in a heart beat. She enjoys running and spinning. She squeals when she's excited. If you sing with her, she'll get the biggest grin. She loves teaching you how to dance (she's awesome at it.) She loves organizing things. And she LOVES chocolate. Okay, what 3-year old doesn't right?

 

When she was 2-years old, we started noticing a decrease in speech. She had her first word, her second word, even her 15th word. Then it just kind of went downhill. Honestly, I thought she was just quiet. At her 2-year check up they asked how many words she had said, we listed what we knew, and went about our way. I didn't know I should have said, 'Her speech is decreasing.' It was my first child. I didn't know what I was supposed to be looking for and I certainly didn't know what proper speech development was.

 

During her 2-3 year, we started hanging out with families that had children the same age and we started noticing a lack in communication. Don't get me wrong-- our three year old is smart. She can count to 100, she can say her ABCs, she can sing just about any song off of 'Yo Gabba Gabba,' and she can even say one word that begins with each letter of the alphabet (thank you Fisher Price App!) The only difference is she doesn't 'talk' to us. She doesn't tell us about her day, ask for things, call me 'Mommy,' or say 'I love you.'

 

There's such difficulty in writing that simple statement.

 

I've never heard 'Mommy' from her lips.. and it's a stab in the heart when I think about it.

 

At her 3-year check-up, we mentioned it, but once again, it was discussed that she could say her alphabet, her numbers, and words pertaining to the letters. They thought it could be possible speech delay, but the subject wasn't really stressed nor was it thought to need intervention.

 

I've felt sick since.

 

As a Mom, you just know when something doesn't sit right. You sit at the mall play place and you see children the same age as your child and you think, 'If I ask her to do something like that mother just did, she won't do it.' And it hurts.

 

You start to ask yourself all of these questions:

 

What did I do wrong?

Did I parent her right at a young age?

Did I talk to her enough?

Did I play with her enough?

Am I a good teacher?

What could I have done differently?

 

 and then you ask yourself the tougher questions:

 

What if it's something deeper?

What is the root of the problem?

What is down the road for her? For us?

Will she communicate one day?

Will she comprehend one day?

Will she have best friends..? A boyfriend?

Will she be able to attend school?

Who will she become?

What if the same thing happens to my other two children?

 

You get to a point where it just breaks you.

 

And then you have tears falling from your face as you write a blog because you don't have answers, but you seek them.

 

You weep because you want to protect her. You want to shield her from any kind of pain that could stem from whatever the condition is. You want to give her every bit of time, effort, and resources to find an answer... a way to give her a voice.

 

And you call a doctor. And you make an appointment for an evaluation.

 

And you wait.

 

You watch the hours pass leading up to the day that you finally get direction.

 

And you prayer that someone finally listens to you. That someone understands. That someone helps you.

 

That day for us is tomorrow.

 

And all I can do is lay on my bed, hug a pillow, and silently cry to God.

 

 And ask for prayers that might read this blog...