How sweet the sound...

My sweet boy starts preschool tomorrow and I am feeling all the feels as I reflect on what a difference one year makes. It is truly amazing to see how much he has changed and I am so proud of everything he has accomplished.

From our trip to Seattle, Fenix was our tour guide at the Point Defiance zoo while sissy took a nap.

Last year, he was terrified of the doctors and it was always a traumatic experience when he had to visit. He also hated sand and refused to touch it. I could never, ever get him to wear a hat or a backpack. Leaving the park resulted in tantrums every single time. He also had a really hard time switching/ending activities that he enjoyed and I could not get him to clean up his messes. When he was 2 years old, we took him to a local water park and he cried and was miserable for most of the time because he hated getting splashed with water. When we got passes to the aquarium, Fenix was terrified of the sharks and scuba divers. He rarely smiled in pictures and looking back, majority of them are of a very serious Fenix.

To say that I am proud of my son is an understatement. He has worked so hard and thanks to countless hours of therapies plus working at home with us, all of those prior challenges are no longer an issue.

He went to the doctors a few weeks ago and was so brave and listened to the nurse and doctor so well. Not a single tear was shed nor was he even remotely upset. He actually seemed to like it and gave everyone high fives when we left.

When we go to parks with sand, you can now find him playing in the sandbox for majority of the time. He still is unsure about walking on it if he has flip flops on but has no problem touching it with his hands.

Most days when we leave to go somewhere, he likes to wear his favorite Batman hat.

I started giving him a countdown whenever we would leave somewhere or ending an activity. I would say, “In 10 minutes we are leaving…” “In 5 minutes we are leaving…” Once the time was up, I would say “We are all done! That was so much fun! We can come back here again.” I seriously can’t believe something as simple as counting down and giving him assurance that we will be back would work so well.

When it came to cleaning up, we told him that he was not allowed to get a new toy until he put the other one back. That took a lot of consistency from us and tears from him but he finally got it. Singing Clean Up Pick Up, Put Away from Daniel Tiger made it a little more fun too.

Watching my boy be so care free at the splash pads this summer just made me beam with joy. He got sprayed in the face and had water dumped on him and he LOVED IT! No tears, no anxiety just a boy having the time of his life.

When we go to the aquarium, the first place he wants to go is the shark exhibit. You will hear him from 50 feet away laughing and talking about the big sharks!

The kid also loves to ham it up for the camera now and asks me frequently to, “Take a picture mommy!” as he poses and smiles for me.

He is an extraordinary little guy and I am constantly in awe of everything he has overcome. He continues to prove every stereotype wrong of what living with autism is like. He loves to snuggle, hold my hand, give kisses and has a surprising ability to show empathy. Yesterday he noticed a scratch on my arm and said, “Ouchie!” I said that he was right, I do have an ouchie on my arm. He leaned forward, gave my arm a kiss and said, “All better!” I just about died.

I have never met anyone like him, I mean, what 3 year old can identify the Eiffel Tower, Taj Mahal and can name every single country in South America. Yep, that would be Fenix. His ability to memorize and retain information is mind blowing.

He has come SO far in just one year, imagine the progress he is going to make in 2, 3, 5, 10 years. He is going to do great things and inspire so many people. I am looking forward to being in the front row of every soccer practice, school performance, graduation and everything else, cheering him on and quite possible crying with mascara running down my face. Who am I kidding, of course I will be crying! 

And because I can't end a post without some Truth, here is one of my favorite quotes from C.S. Lewis. 

"Faith is the art of holding on to things in spite of 

your changing moods and circumstances."

With everything I have gone through this past year, this could not be more true and I am so thankful for His endless mercy and grace upon grace upon grace. 

Laying yourself down, raising up the broken to life

I just want to say, thank you SO much to everyone that has taken time out of their busy day, to come and read my little blog. Another huge thank you for all of the encouraging and supportive comments and messages that I have received, especially regarding my last post. To have so many people reach out to us has been overwhelming. Again, I say thank you and I wish I could give you all hugs because if you don't know me, I LOVE to give hugs, haha. I am hoping to post a day in the life of Fenix and curate a list of things that has helped him with sharing, cleaning up, and communication. We have learned SO much through his therapies and I would love to share that with you all since everything can be applied to ANY child.

I know, deep within my soul, that God made my son with a purpose. It is a sentiment that I have prayed and echoed since his diagnosis. It gives me comfort and peace on the hard days. I have clung to it with every ounce of strength in me.

But.

Some days are just hard. And I question God.

Why?

Kids can be so cruel, add on a diagnosis that makes it hard for my boy to socialize and communicate and he has a huge target on his back. How will elementary school be? Or Jr. High when everyone becomes that much more self aware and look for someone to take out their insecurities on. Fenix doesn't pick up on things like sarcasm or has the ability to read other people's emotions that well. Will he even know that kids are making fun of him?

 I don't want to think about these things but they keep me up at night. I want to protect my son from all of the ugly in this world, to save him from the hurt. My heart has left my body and is walking around and I can't bare the thought of kids or adults treating him differently or limiting him because of his diagnosis. I won't always be there to advocate and stand up for him.

I want this little blog to be an uplifting place. To show all of the amazing things that God has done and continues to do in our lives. However, I also want it to be an honest portrayal of our journey. Despite all of the good days and grace that is constantly being given, that I have moments of weakness and hurt and pain. I don't always have it together. I wrestle with God and His plan. I am trying so hard to heal the scars that run so deep with His love and compassion and mercy. To let go and to let God.

God had to break me down, strip me away of everything I was holding on to: doubt, pride, control and so much more. After Fenix was diagnosed, I was in the worst type of pain that I have ever experienced. Once I finally dug myself out of that hole, I could truly feel His presence, and I knew that even though it will be at times difficult, that everything was going to be okay. As long as I put all of my hope and faith into Him, that I could climb that mountain that before, seemed impossible.

A few months later, I was baptized at the church that I found God at 11 years before.
It was the same church that I invited a boy that I had only talked to on Myspace and had no idea that I would be meeting my future husband.
The same church that 5 years after that first meeting, we were married.
The same church that 2 years after we were wed, we were dedicating our first born son to the Lord.

I have learned so much about myself because of his diagnosis. That I am stronger than I gave myself credit. That I cannot do this alone and that I need God and a community of people that love and support us. That I need to humble myself and to share our story, the joys and trials, so that it will bring glory to His name.

Isn't he the most beautiful boy you have ever seen? I think so, even though I may be a tad biased.

I will never give up. 

I will always fight for him. 

He will ALWAYS know that he is so loved by us, 

our family, friends but above all, by our God. 

He is a child of God. 

"All these pieces 

Broken and scattered 

In mercy gathered 

Mended and whole 

Empty handed 

But not forsaken 

I've been set free 

I've been set free

Amazing grace 

How sweet the sound 

That saved a wretch like me 

I once was lost 

But now I'm found 

Was blind but now I see

Oh I can see it now 

Oh I can see the love in Your eyes 

Laying yourself down 

Raising up the broken to life 

You take our failure 

You take our weakness 

You set Your treasure 

In jars of clay 

So take this heart, Lord 

I'll be Your vessel 

The world to see 

Your love in me"

When my heart is overwhelmed, lead me to the Rock that is higher than I.

I wanted this post to be about our day to day activities and all the work that Fenix is continuously doing. But something happened a few weeks that I am still very upset about and honestly still processing. Ironically, it was the catalyst that made me want to start the blog, to educate people that know nothing about life on the spectrum.

I have looked forward to VBS (Vacation Bible School- it is during summer and is at most churches. It is a super fun way for kids to learn about the bible) since Fenix was a baby. A lot of my friends had older kids and everything about it sounded amazing. This summer, Fenix is finally old enough to participate! He loves school and church so much and I knew he would absolutely love going to VBS.

A friend told me about a church around the corner from where we live and the dates of their VBS. Fenix has summer school until 7/10 and with it being so close to home and starting after summer school ended, it was a perfect fit. I went by myself to the office to sign him up.

We have been attending our church for years and after Fenix was diagnosed, I did not inform his Sunday school class because honestly, unless you are familiar with autism, you would not know Fenix has it. There have never been any issues at church or school so I felt like, unless an issue were to come up, I do not need to inform them.

When I got to the church office, I filled out an information card and there was an area for medical/comments about your child. I debated whether or not to tell them about Fenix. I decided to write, my son has autism, mainly so that if needed, they would be just a little more patient with him. Once the secretary at the desk saw that, she immediately said that I need to talk to the pastor about Fenix. Once she said that, my cheeks got hot and I started panicking, trying to fight back the tears because I knew this wasn't going to end well. I had a really bad feeling about it.

The pastor came in and basically told me that, they are not equipped to deal with any special needs he has and they don't have extra people to help him. He seemed very uncomfortable and never asked me any questions about my son or how can they help to make this a good experience. I tried to tell him that he is very high functioning, is on the mild end of the spectrum and that he does not need an aid but at that point, I did not feel welcomed. Without him saying it, I knew that they did not want him there. I am a pretty receptive person and I know he was not going to flat out say, he should not attend but actions speak louder than words. I left the office quickly and got into my car and started crying. I called Matt to tell him what happened and he was furious to say the least.

That was my first experience telling a church about our son and that was the reaction I got. It was also my first time feeling discriminated because of my son's diagnosis. I cried hard and for a long time. That interaction released a flood of emotions and questions. This won't be the first time I have to go through something like this. I can toughen up and handle it in the future but there will come a day that I am not there and Fenix will have to go through it by himself.

Then my feelings of sadness turned to anger. My son has every right to be there. Also, with statistics like 1 out of every 68 children, the church should probably look into getting the proper support kids on the spectrum need. Fenix is on the mild end of the spectrum and would not need additional support but what about the other kids on the moderate to severe end. They deserve to be there and to learn about the bible just like everyone else.

My child is not a burden. But that church definitely made him seem like one. They did not take a single moment to ask any questions about my son. They immediately jumped to conclusions, which were they were not equipped to "deal" with Fenix. They never gave him a chance.

It also made me realize that they know nothing about autism. Or perhaps the only experience they may have had is with one or two kids that may or may not be severe. That is not my son. Fenix is completely and 100% unique. Yes he does have some struggles but don't we all? Regardless of what challenges or needs a child has, they should be able to attend any event at a church without feeling like some sort of inconvenience.

If they had asked me to tell them about Fenix, I would have said,

"He loves to learn. About everything and anything. He can name all the planets, he can speak some Russian words, he knows every car model out there, he has hundreds of sight words, he loves geography and can name the corresponding flag to dozens of countries. He says his prayers before eating and at bedtime and always end them with, I love you Jesus. He is sweet, kind, he gives the best hugs and kisses and is becoming more and more adventurous."

But they didn't ask me about my beautiful and smart son. Instead, they heard the word autism and closed the door on having the privilege of meeting our incredible boy. I say that because you better believe that we will not be taking him there for VBS.

They may not have been aware of the impact of their actions but that is the whole point of me coming forward and talking about autism. To bring awareness to people that know little or nothing about it.

This time, Fenix was blissfully unaware of what happened and for that I am thankful. I can only hope and pray that in the future, people will be more accepting and understanding of each other's differences. In the mean time, I have to try my best to build up his confidence and assure him that he is fearfully and wonderfully made. that he was made in His image, and that God has a plan and a purpose for him.

Your love never fails, it never gives up

I just want to say thank you so much for all the support, love and encouragement. Having everyone take time out of their day to read my little blog and send messages, meant the absolute world to me.

When I was pregnant with Fenix, I prayed like I had never prayed before, for a healthy baby. That is all I wanted. Well God answered our prayers indeed! Fenix was most definitely healthy and was a whopping 20 pounds at 6 months. He was the happiest baby ever and our first year with him was utter bliss. I was on cloud nine with this amazing and precious gift. I also fell in love with my husband in a way that I never thought possible. The man of my dreams and a beautiful baby boy, our life was perfect. 

About 2 weeks after his diagnosis, I decided enough is enough. I allowed myself to go through these feelings instead of bottling them up and pretending they weren't there. That would not have been the healthy choice. Quite a few verses spoke to me and this one just resonated deep within my soul, 

"Don’t be afraid, for I am with you. Don’t be discouraged, for I am YOUR God. I will strengthen you and help you. I will hold you up with my victorious right hand." Isaiah 41:10. 

It took a few months of lots and lots of prayer before I could finally see the light at the end of the tunnel. When you are told your son has autism and that they don't know what his future will be like, devastating doesn't even begin to describe that. At first, it seemed like we were about to climb a mountain and we were unsure of how or even where to start.

But, we had HOPE.
Hope in the form of our God and His plan.

Although we had no clue what we were doing yet, we had faith that our God made our son in His image.

Psalm 139:14 says, 

" I praise you because I am fearfully and wonderfully made." 

There is so much comfort and freedom with that knowledge. 

I wanted to start this blog from the beginning. It took a lot of pain and tears to get to where we are today. But through it all, God never left our side. He was there all along, carrying us when we were too weak. 

This is one of my favorite worships songs. I played it over and over as I cried and prayed from the depths of my soul. Through my son's diagnosis it brought me closer to God and taught me to lean on Him and to let go and let God. 

You call me out upon the waters 

The great unknown where feet may fail 

And there I find You in the mystery 

In oceans deep

 My faith will stand 

And I will call upon Your name 

And keep my eyes above the waves 

When oceans rise 

My soul will rest in Your embrace 

For I am YOURS and You are mine 

Your grace abounds in deepest waters 

Your sovereign hand 

Will be my guide 

Where feet may fail and fear surrounds me 

You've never failed and 

You won't START NOW 

So I will call upon Your name 

And keep my eyes above the waves 

When oceans rise 

My soul will rest in Your embrace 

For I am Yours and You are mine

Spirit lead me where my trust is without borders 

Let me walk upon the waters 

Wherever You would call me 

Take me deeper than my feet could ever wander 

And my faith will be made stronger 

In the presence of my Savior 

Oh, Jesus, you're my God! 

I will call upon Your name 

Keep my eyes above the waves 

My soul will rest in Your embrace 

I am Yours and You are mine

Thank you again, to every one that reached out and has supported us. 

I love you all.

Life with Fenix

Hello, my name is Tahnee Marie, I am a wife to my red bearded man and mama to Fenix (3) and Emery (1). I love Jesus, Harry Potter, all the foods, and snuggling with my babies. Bear with me on the not so cute layout. I am on borrowed time while our daughter naps and I am hoping to have it looking cute soon! I have always enjoyed blogging and have done so on and off for 10 years. I have never been consistent, mainly due to self-doubt. I felt like, everyone has a blog and is doing it way better than I ever could hope to, so why bother? Everyone has something to promote, is super crafty, takes perfect pictures of their curated life and they usually look like they walked out of a J Crew ad and their homes look straight out of Pottery Barn. I can’t compete. So I would stop blogging.

I think one of the reasons that I love blogging so much is that typing my feelings through my keyboard gives me a little security and allows me to sit and really think about what I want to say, and of course going back and editing tidbits is always nice too. When it comes to our son, there has been so much that I have wanted to say but I also felt restricted by small paragraphs on Instagram and I wanted a little space of my own to put my feelings in.

I tried taking Fenix to the doctor about 4 months before his diagnosis because I had quite a few concerns about our boy. He hated sand, refused to get dirty, would not wear any hats, would absolutely freak out over the smallest issue, he wasn’t talking that much, his eye contact wasn’t great either, he wouldn’t respond to his name, and he was the pickiest eater I had ever seen. Everyone I talked to, family and friends, said he was fine. We started calling him a quirky guy because that best described him. Our pediatrician agreed that he was totally normal and all of his reactions are normal too. I wanted to believe her and a part of me did feel relief but the other part of me was not so convinced. As a mama, I knew that this intuition and gut feeling that something was wrong was there for a reason.

One day, we went out with friends for some doughnuts in the morning. On the drive back, Fenix’s sandal broke. He LOST it. He was hysterical, screaming and crying. He just kept saying, “shoe! shoe! shoe!” I could not understand why something so trivial could produce such intense emotions so quickly. He cried for over an hour over his broken shoe. It was heartbreaking to see your child so upset and nothing I did could calm him down. I knew most people might look at the outburst and label him as a brat but I knew there was so much more going on. So I made another appointment with his pediatrician and I was not going to walk out of that office without getting referrals for an evaluation.

I don’t know what the doctors were going to say about our boy. I was desperate for answers and help. I felt like a terrible mother for not being able to help Fenix and I was at the end of my rope. I know Fenix felt the same way. He could not effectively communicate which seemed to result in many tantrums and tears, from both of us.

About a week before Matt’s birthday, we went to meet with a team of doctors: 2 psychologists, a speech and occupational therapists and another doctor that would facilitate everything during our meeting. We filled out form after form and I checked off a lot of no boxes which made all of my fears get worse and worse. We watched as the doctors tried to engage with our boy and it wasn’t working. After about 3 hours we left and were told to return in 1 week and that they will all meet and give their evaluations. That was the longest week of my life.

When we went back, we had the kids with us during our meeting. We sat in a room with a huge table and the doctors sat across from us. They had huge stacks of papers that they all had written their evaluations on and I knew that was not a good sign. They diagnosed him with ASD, or Autism Spectrum Disorder. They also said that he would be more on the mild-moderate end but that we won’t know fully until he receives therapy and we see how well he progresses. Then they started going more in depth on their interactions with Fenix and using terms that I did not understand and it honestly felt like a blurry dream. I was present but mentally and emotionally I was gone. One of the many things they said that I actually understood was that any children we have after Fenix will now be at a greater likelihood of also having ASD. We all looked at Emery who was about 6 months. She was a happy little butterball looking at everyone and smiling.

We left the office with tons of paperwork, including things like contacts for support groups for parents with kids of ASD. For 2 weeks we were in a fog of depression and sadness. I look back and it reminds of Harry Potter and any scene with a dementor, who come and suck all the happiness and hope from those around them. That is what it felt like. We had absolutely no idea what the road ahead looked like and we felt so unprepared and unequipped.

I started a private blog for family and close friends shortly after Fenix was diagnosed to give them updates on everything. After he was diagnosed, I didn’t want anyone else to know. I felt like we were keeping some sort of secret. The main reason we only told our immediate family and closest friends was I didn’t want anyone to treat/look at Fenix any differently. I was a super crazy mama bear that was trying to protect her cub. I felt like a raw and exposed nerve that would cry at any given moment. I was on an emotional rollercoaster that I could not get off of. Grief, sadness, loss and a pain in my stomach that I never experienced before. I would sometimes just stare at our beautiful and perfect boy and cry. What was his future like? I had so many questions and no one could give me any idea on what we could expect for our journey ahead. I felt so isolated and alone. The hopes and dreams that I had for our son were slipping away and I was devastated.

The reason why I wanted to start blogging again, particularly about our journey with ASD, was to give people hope and insight on what our life is like. The spectrum is so vast that kiddos with ASD are hardly alike. They may share common traits but you will be hard pressed to find someone just like Fenix. I want other parents to know they are not alone and that it is okay to feel those negative emotions that we were once drowning in. This diagnosis is life changing and requires you to completely change everything about how you parent that child and to humbly admit that you have no idea what you are doing. I am not an expert in any way, in fact I am just scratching the surface on everything autism related. I am simply a mama bear that loves her cubs so fiercely that I would give my life for them in an instant. I am committed to doing everything in my power to give Fenix every opportunity to succeed in life. This road so far has been messy, stressful, and heartbreaking but my gosh has it been beautiful. Our boy inspires me every day and I am so dang blessed to be his mama.

I know this post wasn't super uplifting or rainbows and sunshine but it was a time that was super important and critical. It is okay and completely normal to go through that stage of grief and it is a part of our road to healing. Pain and heartache are a part of real life and I feel like without acknowledging it, I am not giving an accurate portrayal of the process as a whole. There will be a lot more posts dedicated to the amazing things our boy can do and I can't wait for all of you to get to know one of the most interesting person I have ever met.

 

I hope this blog and our boy inspires you too. To not let others tell you what you can or cannot achieve, to face your fears and overcome them, to push yourselves to the limit and to dream BIG.

Thank you from the bottom of my heart for reading this.

xoxo Tahnee