We're in Holland.

I sat down the other night and looked through pictures of our three-year old. I cried during her newborn pictures because I couldn't believe she was that small, once upon a time. 6lbs 3oz, 20" long, as a matter of fact. She was a mere 5lb 12oz when I brought her home from the hospital. I can remember that day like it was yesterday. We had to stay an extra day at the hospital due to her having jaundice and the weather was absolutely crazy. The day I had her, it was 20* outside and snowing. The day I brought her home from the hospital, it was 50* and hailing.

I teared up as I looked over her first year. I had videos of her crawling and walking. Pictures of her trying baby food for the first time. I even have a video of her saying 'Gigi.' I forgot I had that-- proof that she spoke and repeated words years ago.

When I got to her 1st birthday pictures, all of these feelings started rushing back to me. I feel like that was the moment I knew-- I knew something was.. different. I wouldn't admit it then, but looking back now, I had that pit in the bottom of my stomach. She cried the entire time we had her birthday party. 11am-12:30pm. I wrote it off as she was just tired or she was just a baby, but, she was miserable the entire time the 80+ people were in the room.

She eventually fell asleep and woke up an hour later.. after most of the people had left. There were about 15 people sitting around, waiting for her to do her smash cake and she was fine... peaceful. We all kept saying 'The nap did her well...' but even then, I just felt 'off.'

For her 2nd birthday, she melted down as well. Once again, we said, 'It's 1PM.. time for her to sleep' and she did. She slept through her birthday party yet again. Maybe it was some kind of coping mechanism for her? I'm not sure.

But I feel like, looking back, even in those moments so early on...  I knew.

And here we are, almost 4 years later.

4 years since she came in to this world and was the prettiest thing I'd ever seen ( only until her gorgeous sister  was born almost exactly 2 years later.)

I read a poem the other day that someone shared with me called 'Holland.' If you've never read it before, HERE is a link. It's definitely worth the read-- makes you think. So many people say, 'I don't know how you do it' or 'How do you handle all of this' or 'Was this diagnosis hard for you to hear'... And I never really knew what to say. Then I read this and it all made sense.

In this poem, the author writes:

"... everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

This sums it up.

It's been a month and a half since we heard the words that our three-year old is on the Autism Spectrum, but in reality, we have known deep down much longer.

However, since hearing the words, my processing has been different. Where once I looked at my 3-year old, and as terrible as this sounds, I 'analyzed' her.... things are much different now that we have seen a doctor and heard the words.. choked them down.. out loud.

As I always say, when I write all of this... I'm not saying we have accepted defeat or that our world is over. I'm just explaining how my feelings are in this process...

Now, I find myself in a constant battle between feeling a sense of pain when I see a 3 almost 4-year old carrying on an entire conversation with their parent or a stranger and feeling hope that that will be my three-year old one day. I'm in a constant battle between feeling bad that I wish my three-year old could communicate with me and feeling happy that my three-year old is healthy and safe. I'm in a constant battle between not understanding why she has to go through these obstacles to do every-day tasks and feeling strong enough to overcome them.

My mind is in a constant battle and some days I don't know whether to cry, be brave, write a happy blog, or write a blog that displays my raw feelings.

I find myself swimming in this sea of anger... faith... fear... determination...

How is that possible? That I could have faith and be angry all at the same time.

I was raised in church, so trust me when I say, I know His Word like the back of my hand. I know that we aren't supposed to question God and that all things work for good to those that love Him. I know He has everything in His hands and that He doesn't give us more than we can handle. I know that He designs us from the womb and we are crafted perfectly in His hands... I don't doubt any of that and I still believe every word with all of my might.

However... my human side... the side we all display, comes out. Jesus even got angry.

My human side. The side I try to hide from every one.. it shows at times and I find myself crying and feeling upset... hurt.. lost... mad even.

My daughter will go on to live a thriving life because we have such an amazing support system and she is a driven three-year old. HOWEVER, I still look at our situation right now and wonder 'What will 10 years from now look like? Will she talk? Will she comprehend what people say? Will she be able to go to the bathroom on her own? Will she be able to write? Will she be able to use a fork and a spoon? Will she go to school and have friends?' The faith in me screams: YES. Yes she will do all of these things!! But my heart, at times, fails me and I cry inside thinking 'What if she doesn't.?'

When I gave birth to her almost 4 years ago, this thought never even entered my mind. That I would have a child that cannot communicate with speech. That I would have a child that doesn't look me in the eyes or understand simple commands. A child that doesn't yell 'Bye Mommy, I love you' when I walk out the door or welcome me with a hug when I walk through the door.

When you have a baby, you never picture that. You picture them learning new words, having new milestones, potty training, starting kindergarten... all of it working together, flawlessly.

Then life throws you a curve ball and you find yourself going to meeting after meeting to set your child up in a special education preschool... and you're running to speech therapy appointments.. and occupational therapy appointments.. and sometimes driving there, things weigh on you, and you say in your heart, 'I didn't picture it being like this.'

No, I didn't picture this-- I pictured Italy, if we are being honest. I didn't picture Holland once. But, we are in Holland now.... and it's a different world than what I had imagined, but our bags are packed.. and we are ready for the trip.

This might not be what I pictured, but it doesn't change the depths of my love for her or my determination to do whatever I have to for her to flourish in every possible way. I see how smart she is in the little things she does-- the progress we make. She has more persistence than some adults. I knew that the moment she was born...

... We just have a different path to take, a different journey. Not a less beautiful journey. Just different.

Update On Our Journey

Today we had an evaluation for our local school system to determine whether our three-year old *needs* to be in a special education pre school class.

When we left Nationwide Children's Hospital February 2nd, our daughter's psychologist gave us a list of things we needed to work on between then and her next evaluation at Children's Hospital... One of them was to get her enrolled in a preschool program. 

We have been working hard at home with exercises he gave us to work on, but we know in our hearts, greater intervention is needed. 

A sweet lady came to visit today and observed our three-year old doing her every-day activities. She watched how she played with toys and how she interacted with her siblings. It is critical at every stage in our journey.. As we meet new people and deal with new schools, hospitals, etc. that they evaluate our daughter for their own records. We have learned that much since beginning this journey almost 2 months ago. 

We had a wonderful visit and we learned a lot about the special education programs in and out of our school district. We will know more in a few weeks after our follow up appointment but I feel so excited that we are making progress... All for our daughter. 

I don't doubt that she will do great things with her life. I know she will. She has the determination and the knowledge, but one thing I know is that we all need help teaching her how to harness her abilities and use them. We know she needs the capability to communicate her thoughts and needs. It is our deepest desire that she lives a flourishing life... That she thrives in every aspect. We want her to shine her light in whatever way she desires but we want to make sure she has all of the resources at her fingertips to do this. 

This is why I am so grateful for programs like the ones we learned about today. I am thankful for people who have the patience and skills to spend time with those on the spectrum and teach them things that they are struggling to currently learn. It blesses my heart. 

Our three- year old (and our one-year old and our 4-month old) are our most prized possessions. They mean everything to us. They are the reason we push ourselves. We want them to have the very best-- and for our three year old, this means that we have to be advocates for her. She doesn't know how to use her voice to communicate her needs right now... So we will be that for her. 

This is why we ask so many questions.. Why we go to so many meetings... Why I keep everyone updated and share our story so often. We are her voice.. We are her advocates. We want to give her the world... And we know right now, it requires work, time, and effort. And we will do every bit of that for her. She brightens up a room with her smile and her laugh. She deserves everything we can give her.. And we vow to always do that. 

I am looking forward to our follow-up appointment. I will try and keep everyone updated as we know more. I love you all and I appreciate you sharing in our journey with us <3

Please Think.

I'm a mother of a child with Autism and while I haven't been on this journey as long as others, I can already tell you certain things unnerve me to my core.

I try to be compassionate, caring, and bite my tongue, but unfortunately, my heart breaks at times and the only thing I can do to help heal it is get some words off of my chest. 

I am not claiming that individuals in this world are acting out of malice or hatred.. I think it's more of a lack of not thinking before speaking.

Hearing the doctor speak the words 'Your child is on the Autism spectrum' is a difficult thing to choke down, especially initially, even if you have already noticed certain signs..

Love, support, and kindness.. All of that works together to help our family push forward and do what is best for our child.. Even when we are struggling emotionally with the situation. 

What doesn't help? 

Reading article after article that individuals send us or share about how vaccinations cause Autism. Let me humor all of you for about a minute and let's say 'Sure, Vaccinations cause Autism' (even though the 'doctor' that made these claims in 1998 has been stripped of his medical license for making assumptions and causing panic)... Why on earth would you share this kind of information with a parent that is struggling emotionally at the time anyways? We received a great deal of information at our first evalution.. One of those packets pertained to vaccinations, so I assure you.. Our child's doctors and psychologists are doing their job informing us. 

As if we are not already dealing with enough emotions and feelings during this process, why not add guilt to the mixture? As if we already don't have enough on our plate, how about you add your 'here's something you haven't thought of, but I know all about it' to it too.

I rarely post blogs in this nature. Usually they are faith-filled and encouraging, but sometimes even the momma that thinks she's a tiny bit strong gets frustrated. 

This isn't a blog to debate vaccinations because, quite frankly, to each his own. I don't share my opinion on the matter and I would prefer if others didn't share theirs with me as well :) The purpose of this blog is to share one thought: Please be mindful of the things you share with us and the words you speak. You can build someone up with your words (written and spoken) and you can tear someone down. When someone is going through a difficult time, please choose words of life and encouragement.... Not words of shame, guilt, and haughtiness. 

We receive a great deal of information.. From many sources.. Many studies.. Many thoughts from doctors, psychologist, neurologists, and more. They are helping us navigate this new journey. We receive support, love, and kindness from our friends and family. They are also helping us navigate this new journey. 

I say all of this to say... Please think before speaking.

Once again, I am not saying we choose not to be informed or that we are blind to the discussions in the world today. I am strictly saying that this is a difficult time for all of us right now and words of encouragement, love, support, and empowerment will go a lot further than words spoken out of passive-aggressiveness or Internet research. 

I love all of you and I appreciate your prayers so much. I wouldn't feel half as strong as I do today without all of you and I am sure our three-year old wouldn't be doing as amazing as she is with our 'exercises' without the prayers of good people.

I hope you all have an amazing week!

God bless! 

Sensitivity

*Disclaimer: through this blog, I am not claiming that my child sees spirits or that all children on the spectrum (or off the spectrum for that matter) see spirits. This was just an experience we had with our three-year old daughter.

We recently visited a local restaurant in our hometown. While there, a waiter approached our table and the closer he got, our three-year old began putting her hands on her ears, screaming, and burying her face in to her neck. She was crying horribly, so my husband had to pick her up and stand across the room until he was done. 

This isn't a normal situation for us. During our discussion with the psychologist at our daughter's evaluation, he asked how she is in public because some children on the spectrum have a difficult time in stores, restaurants, etc. This isn't an obstacle for us-- our daughter typically does wonderful wherever we go. 

We were kind of shocked to be honest. It was completely out of character. After he was done, she came back to the table, ate her meal, and she was content. However, if she saw him coming near again, she started losing control once again.

This was a few weeks ago.

We have been to numerous restaurants since then and she hasn't acted this way again. Waiter after waitress after waiter has approached our table and she's sat still, smiled, sang. Acted like herself.

Fast forward to this week. We visited a restaurant this week (different from the one mentioned previously) and the same thing happened. A waiter walked over to our table and she began to cover her ears, cry, scream. She was shaking uncontrollably. I started getting nervous... What if she panicked. We tried to reassure her that she was fine. We were right there, but she didn't take her eyes off of him and if he got close to our table, she began crying and covering her ears again. Other people approached our table with food and drinks.. She was fine. But this one waiter was causing her to be extremely fearful.

We eventually had to get to-go boxes and leave. She just couldn't handle the situation and it broke my heart that I couldn't calm her down.

 

I took her out to the lobby area and as soon as we reached the doors, she stopped. She started laughing and dancing. She was back to herself again. I was standing in entry way and from where I was standing, I could see the front desk area. I saw Ethan pay the bill and I saw the waiter from our table walk up front to the pay the bill. The closer he got to the front desk (which was right beside of the lobby) the more tayler began to get restless. She covered her ears, dropped to the floor, started screaming, and saying 'No no no no!' I grabbed her and hugged her. I was in shock because I could see him, but she was too little to even see over the window. There's no way she knew he was nearby-- she was strictly going by feeling.

As he walked over to the table, she started calming down. And then he walked to the back of the restaurant, and she was perfectly fine again. Ethan came out with the other two children and we left. 

The entire trip home she was singing and laughing. She was our three-year old again.. Carefree and happy.

I know many claim children can 'see' spirits, ghosts, etc. I didn't know they could see 'bad' things though.. And that's what it seemed like.

It has me wondering if she's sensitive to things like this. It broke my heart because I've never seen her scared like she was that day (or the first day this happened.)

I wrote this blog mostly for my own memories.. A journal of our experiences with our three-year old. The good, the tough, the interesting. 

Confessions.

I have a confession.

We went through question after question Monday morning concerning the development of our three-year old. 

We discussed the M-CHAT (Modified Checklist for Autism in Toddlers.) If you haven't looked in to this, it's a great tool for parents to check-up on their children. 

On the M-CHAT, you will see questions like: 

If you point at something across the room, does your child look at it? 

Does your child play pretend or make believe? 

Does your child point with one finger when asking for something?

Does your child point with one finger when showing you something interesting? 

Is your child interested in other children? 

Does your child respond when their name is called? 

Does your child smile when you smile (reciprocate feelings?)

Does your child look at you in your eyes when you we talking to them? 

Does your child copy what you do? 

And with every question, I answered 'no' about our three-year old. It was difficult to do because the more questions are asked, the more reality sets in... 

My confession, however is this...

With every 'no' answer I gave for our three-year old, inside I was screaming 'yes' for our 1-year old. 

Yes, she responds to her name. Yes, she plays make-believe. Yes, she makes eye contact. Yes, she points to things. 

Yes. Yes. Yes.

Is it bad that I was sad and relieved at the same time? 

Sad because I know my three-year old has a journey ahead of her to get where she will want to go. Sad because I can't communicate verbally with my three-year old. Sad because I see embarrassment and frustration in her eyes right now.

But relieved because I see my almost 2-year old talking.. Pretending... Fake answering phone calls.. Mimicking facial expressions.

Please do not get me wrong with this blog-- I'm not trying to compare my children. I'm not saying my three-year old is less. And I'm not saying that Autism will control my three-year for the rest of her life. I wouldn't be angry if my one-year old were diagnosed. BUT my heart would hurt because I see the pain on my sweet girl at times and I don't want any of my other children to go through that. 

My confession is simple.

I watch my children like hawks. I feel like I'm constantly analyzing their behaviors. If my 3-month old won't make eye contact with me for a second or will not follow a toy, I start praying.. I start making even more eye contact with him. 

And then I go through guilt.

Autism doesn't have a period at the end of it because that isn't the end of thought... The sentence. Autism doesn't control my life nor will it control our three-year old's...

But I still find myself struggling with fear.. Anxiousness.. For my other two.

Our three-year old is nothing short of amazing. Smart. Beautiful. Kind. Passionate. Driven. But I also see her overwhelmed with nervousness, loud noises, frustration, embarrassment, and a sense of being lost at times because she doesn't understand things.

Her life isn't over. I don't think this will hold her back..

But the human side of me can't help but obsess over our two younger children. Is this normal? Probably. Who I am to say. What I do know is that it's real for me... For my heart. 

I love my children more than anything. I want the best for all three of them. And I pray that God blesses all three of them in His way. 

Finding Our Way

I was a bundle of nerves leaving the house Monday morning. My husband, our three-year old, and myself woke up at 5:30am to leave by 6:30am. We had a long drive ahead of us and we had to be there by 8am. 

The entire drive, our three-year old slept and my husband kept rubbing my hands. I was nervous.. Anxious.. Excited. Nervous because I had no idea what to expect. Anxious because I was scared they were going to take her in to a room without us. Excited because I felt like we were finally going to have answers.

My hands were sweating. I was hot. I felt like an elephant was sitting on my chest. I just kept saying 'Peace of God, be with all of us' the entire way. Every sign we passed caused my nerves to escalate even more. 'New Albany,' 'Newark.'

When we arrived, I had a million emotions swirling through my heart and my mind. As we were sitting in the waiting room, my heart started to sink as time passed. I filled out papers while my husband watched our three-year old. There were about 6 other families there all with children who have been diagnosed with Autism. And you know what? All of those kids were talking. They were listening. They were sitting by their parents.

And my heart felt like someone stabbed it. I felt like someone took the very breath from my body.

I became overwhelmed with pain.. Sadness.. Fear.. Anger. I know, I know.. You aren't supposed to be angry at God. But I'm just putting it on the table-- there's no use in hiding it. He sees my heart anyways and lying would only make it worse. He knows the truth.

I was angry because it was then I realized 'Maybe we don't have a handle on this.' I know you aren't supposed to compare. You're supposed to have faith.. Determination. But when I saw her spinning around the room... Melting down because they put an arm band on her (which they took off about 2 minutes later and gave her a name tag instead, thank God lol) I realized.. Maybe she's further behind than I thought?

It killed me inside!

My husband kept holding my hand, squeezing it. He would say 'I know it's hard. I know sweetie.' Thank God he was with me because I swear in those moments, he was the only thing holding me together.

Why was I so emotional? I always say I know that an Autism diagnosis doesn't mean my three-year old's life is over. It's not. I'm emotional because I see the development of other three and four year olds and reality sets in for me. They asked a question yesterday 'Where do you think your child is at developmentally?' And do you know how hard it was to think of your 21-month old daughter and think 'My three-year is not even to that point yet?' 

They called us back and we met an amazing psychologist. I know 'amazing' is a pretty vague term, but I can't think of any other way to describe him. 

As soon as we walked in his room, he led tayler to the toys and he got right on her level. I could have cried seeing the big smile on her face. She felt safe. That was relieving.

We sat and talked for awhile. He asked numerous questions, he gave advice... I walked away feeling like I had learned so much and we only sat with him for a little over an hour. I'm sure he has been doing this a long time, but I was amazed at how well he knew Tayler.. And we had only been there for an hour. It was like he knew her all her life.

She spent the majority of time lining up the animals he had there.. And the alphabet magnets he had on his filing cabinet. We told him that's her fixation-- numbers and letters. Just a few days ago, she made a sequence of 13 numbers, not in numerical order. She would then mix them up, move them to the next room, and put them in the exact sequence again. I was impressed considering I can't even remember a phone number when someone tells me.

As we were finishing up our meeting, he shut his laptop, looked right in our eyes, and said 'We look for three things when [officially] diagnosing someone with Autism.' (Her pediatrician confirmed the signs in January, but we needed a psychologist to diagnosis and give us the tools to help her.) He then proceeded to say that she was showing all signs, so we would officially be coming back for a more in-depth evaluation. 

Once again, I felt relief and pain.

I already knew this. Why was I still crying hearing the words?

The psychologist sat and talked to us for quite awhile about what this means for us.. For Tayler. He gave us three things to work on over the next few weeks and he got is set up with speech therapy which I am over the moon about. I am anxious for the day I hear 'I love you' from my sweet girl!

We are working on eye contact over the next few weeks which is interesting to say the least.. 

Leaving Nationwide yesterday morning felt amazing. I finally feel like we have the keys (not even all of them) to helping her! I can't imagine how we are going to feel a year from now because I already feel as though we are making progress. 

And I also realized that the Autism Spectrum is a spectrum for a reason. 'When you meet one child with autism, you have met one child with autism.' All of them are different, including my girl. She isn't behind. She isn't less. She's herself. That's it. 

We have such an amazing support system for our family as well as Tayler. People that love her and want the best for her. My husband has been so patient with her, working on everything the psychologist told us yesterday. Watching him play with her, attempt to make eye contact with her... It makes me fall in love with him all over. I cried before going in to the appointment because I got text message after text message from sweet friends. My mom called me asking for all of the information her and my dad could have to help them understand the depths of Autism and how they can help... As I said, the support is amazing. I couldn't ask for a better family or friends.

Thank you all for sharing in our family's obstacles and triumphs. We love all of you. And as always, thank you for letting me share my heart.

I feel like we are finally headed in the right direction. I'm not naive enough to believe we won't have tough days, but I am thankful that we finally have a plan of action.. And lots of knowledgeable people on our side!

God is good, that's all I can say. I might get angry at times... Question certain things, but at the end of the day, I know He has our best interest at heart and He is holding our family in His hands. 

Please just keep all of us in your prayers over the next few weeks. We have a lot of things we have to work on.. Some things we have to change.. Before her 2-day evaluation in March. And we will probably need even more prayers for that. 

We still receive messages saying 'if there's anything I can do, please let us know..' And I touched on this in previous blogs-- all we ask right now is that you love on Tayler (and our 1 year old and our 3-month old.) Spend time with her. Play with her. Talk to her. She might not be able to talk back, but she can listen. LOVE her. BE THERE for her. SPEND TIME with her. Let her know you care. She needs all the support she can right now because she is going to have some uncomfortable changes in her future that push her outside her comfort zone.. And ours as well. 

We appreciate all of you!