looking back stings sometimes

This is pretty darn personal, but I believe you should share the personal things sometimes, too. I was going through old videos and found this one of my Jax at 8 months old on Halloween. It made me smile and laugh to watch it. I thought how strange it is that although it was only 6 years ago, it feels like a lifetime ago. 

So many things have happened since then. I told my husband to go look at the cute video I posted. I guess you never know when things are going to "hit", do you. 

He couldn't finish the whole video. He had to turn it off, and he cried. Then it hit me, too. 

Jax was a very "normal", happy baby. ALWAYS happy. Content. Always trying to make us laugh. I miss that baby sometimes. I love my Jax for who he is with every fiber of my being. I just...miss the normality sometimes. I miss how care-free we were back then. Man, we had NO idea what was coming. My other kids didn't "change" at 2 years old. Why did he? I didn't really get to experience the toddler years with Jax because he was in his own little world much of the time. I want that time back that I missed out on. But I can't have it back. I have to wipe away the tears and move on, but it's hard to do sometimes.

 

the rainbow after the storm

Today started out bad. Then it got worse.

Let me start off by saying...I got three hours of sleep last night. Enough said, right?

With that in mind...

Today was Makailee's school carnival. Josh and I decided it would be less stressful if one of us took just the girls to the carnival. So, Josh took the girls to the carnival and I decided I was going to be really brave and attempt to take Jax to get a haircut.

Back story here: Jax hates having his hair cut. Okay. That's a major understatement. It terrifies him. I usually end up holding him down and shaving it all off when it becomes out of control long. Last time I took him to a hair salon to have it cut, he ran out of there as soon as he realized what was going down.

Anyway, his hair is super long again, and I decided I was going to be brave and attempt to take him to a salon to have it cut. I had both boys with me, and I was feeling pretty proud of myself for even attempting such a feat.

I had made an appointment with the salon earlier that day. It was all set! The boys and I walk in, sign in, and have a seat. The girl tells us she'll be with us in a few minutes. No problem, right? Wrong. As I'm sitting baby down, Jax walks over to a couple of guys sitting across from us. He says hi to them. They ignore him and look at him like he's from another planet. My heart sinks a little bit.

I have Jax sit on my lap. Baby hops off the chair and wants to run around. I stand up to grab him. Jax walks over to one of the guys and before I can grab him, yells, "booooo!" pretty loudly and laughs. The guy pushes Jax away from him, then mumbles something while looking at my sweet little boy with total disgust.

I say to the man, "What did you say?" He says in an extremely angry voice, "I SAID, you better keep him away from us and I mean it!"

There was another older gentlemen sitting by us who didn't say a word. Just looked at me, then turned away.

I was so humiliated and sad. I kindly asked the girl to cancel our appointment. I grabbed my boys, and we left.

There were SO many things I wanted to say...but I knew if I stayed any longer, I would have ended up crying and I did not want them to see me cry. I needed to be strong.

I drove back to Makailee's school carnival feeling totally defeated. I let the boys play on the playground.

I noticed a little girl kept following Jax around. They started playing together. I watched as they sat in a little plastic hammock together for about 30 minutes. They talked. She kept laughing. Jax was really enjoying himself. What struck me even more was how much the little girl seemed to be enjoying his company. The little girl turned to me and started talking to me. She told me they were having so much fun together. I asked her how old she is. She's six. Same age as Jax.

I asked her, "So, you guys are having a lot of fun, huh?! What do you like the most about playing with him?" She said, "He's really funny and sweet. Just like me."

I continued to watch them play together. It took a lot of the hurt away that I was feeling.

While the sting is still there, and probably always will be, there are beautiful moments, too. They are there.

I've learned the only way I can get through all of this with a smile on my face is to look for the rainbow after the storm.

I Have So Much To Say

I may not look you in the eyes, but I see you. I see you for who you really are. I will not judge you. Please don't judge me.

I may not speak too well, but I have so much to say. The things I want to say may not come out of my mouth, but they are pouring out of my soul.

I may not seem like I am listening, but I am. I hear every word you say. I hear your kindness, your love, your frustration, your worry. I hear it all. I understand far more than you realize.  I am in here.

I may not achieve all of your dreams for me, but I will fulfill my own dreams. I will amaze you with the things I will be able to accomplish. I will not let you down. Believe in me.

I may not be able to tell you how much I love you, but I love you deeply. I feel safe when you are near me. I know you will protect me. I know you will stand up for me. You will love me unconditionally. I believe in you. Believe in yourself. You are so much stronger than you realize.

Please don't be afraid. If you will love me, I promise I will bring out the best in you. I will teach you things you never thought you would possibly be able to learn in this lifetime. I will reach into the depths of your soul and help you find the real you. I will help you find your true strength.

You and I have a bond that can never be broken. You understand me, don't you? You understand me in a way no one else ever could. You see into my soul. You look past my imperfections, and you see ME.

You will help me to understand that Autism is only a small part of who I am. You will bring out the best in me, and in return, I promise to bring out the best in you.

In your eyes, I am perfection.

From the bottom of my heart, thank you.

By: Tonia T.

Conversation!!

Conversation is something that takes very little effort for most of us. A simple, "Hello! How are you?" can be very difficult for a person with Autism. Most young children with Autism lack the ability/skill to initiate real conversation. Jax has always been a social little guy but isn't quite sure what to say or how to properly go about making conversation. He also still has a lot of his "own little language" so that can make things tough for him too. 

For Jax, repeating movie lines is much easier than having to try to come up with his own sentences. He usually uses them in the right context, though. For example, when he's annoyed with someone you might hear him say, "You uncultured swine! What're you lookin' at, ya hockey puck?" (from Toy Story) When he's ready to run around he first closes his eyes and says, " Okay, here we go. Focus. Speed. I am speed." (from Cars) He recites movie lines a ton when he's in an uncomfortable situation (parties, church, etc). That is why I get sooo excited when I hear him having "real" conversation with other people. Another little tidbit about Jax: He is super loving and does not understand personal space. He's been known to meet someone for the first time, stroke their cheeks, and give them a kiss. In fact, a friend of ours (a man) got a big kiss on the lips from Jax the other day. Oooh goodness. That was fun.

Today, we were at a playground and there was a guy playing with his kids. Jax started walking up to him and I just knew what was coming. I thought to myself, "Oh Jax...pleeeease don't touch his face! No kissing! Ahhhh!" For real. That was my exact thought process. Jax totally surprised me, though. He walked up to the man, looked him in the eyes, and this was their conversation: 

Jax: Hi! 
Guy: Hey!
Jax: What are you doing?
Guy: Oh, just watching my kids. What's your name?
Jax: It's Jaxton!
Guy: Awesome!

I'm really seeing progress in his ability to initiate conversation. It's pretty exciting!  Conversation plays a huge role in our ability to build relationships, to get jobs, etc...so it really gives me hope for his future. :) 

 

 

My Cup Runneth Over...

I am feeling extra proud of my little guy tonight. 

As the kids and I were walking through Walmart this evening, I was beaming with pride as my little boy waved and said hello to every single person who walked by (while skipping, mind you). :) Some said hello back, and some just looked at him and kept walking. He has come so far. 

One of my very favorite things he says lately when he's hungry or sees a restaurant he likes..."Hey mom! You wanna go to lunch?!" Makes me smile from ear to ear every single time. 

He looks out for his little brother. Whenever Jude is sad about something, Jax will give him a hug or a pat on the head and say, "Awww, are you okay?!" Melts my heart. 

Jax had a REALLY good day two days ago. He was talking like crazy...full and complete sentences all day long, happy as can be, extremely high functioning. It was an amazing day. We soaked it up. Every second of it. I love those days. They may be few and far between at times, but boy are they cherished. 

He also started saying his name when you ask him what his name is. We have been working on this with him since he was two years old, so hearing that has been an incredible feeling. 

I love how kind and compassionate and sweet he is. His angelic personality makes up for the bad days. 

I watched him tonight for a few minutes after he fell asleep and felt so much gratitude. I am so thankful for my son's incredible personality. Despite his deep frustration and confusion at times, due to his Autism, he is an extremely happy, angelic little boy. We are so blessed.

And So It Begins...

I knew this moment would come...

The kids and I went to a favorite park the other day. Josh was working late so it was just me with all four of the little monkeys! While trying to watch all of them at the same time, I happened to be standing right next to the rock wall Jax was climbing on. There were three other little boys climbing the same wall. They looked to be about the same age as Jax. I listened as the boys were trying to talk to him. They were all looking at each other confused, not knowing why Jax wouldn't respond. My first instinct was to help and protect my little boy by jumping in and explaining to the boys why he wasn't responding to them. I thought about it for a second and had a realization...I needed to let my sweet little guy deal with it on his own. At six years old, I am sure this is the first of MANY similar experiences he will have to encounter in his life. I continued to listen to the boys. One of them said to Jax, "if you don't say something back to me, we are NOT going to be friends." Jax ignored him. The boy repeated himself. Jax then said, "okay" and continued to climb. The boys kept following him and continued to try to get his attention. They asked him if he was going to get down and get out of their way. Jax said, "nope" and was perfectly content doing his own thing. Finally, one of the little boys said, "he is so weird! Let's go."

It took everything inside of me to hold back and say nothing...but I know I can't be there every time something like that happens. That is such a tough realization for me. I soooo wish I could just wrap my precious angel up in my arms and never let go...but I can't...

 

 

Autism Is...

World Autism Awareness Day is just around the corner! 

Monday, April 2nd. Be sure to light it up BLUE!

I truly feel it is SO important to raise awareness about this complex disorder. It is of great importance to me because I want people to be more understanding of my son. I love when people ask questions about him because they are trying to understand and get to know him better. I would much rather have someone ask questions rather than just give "the stare". :-)

So, for Autism Awareness Day (and month), I want to kick it off by sharing what Autism is to ME. What it is to Jaxton...to his siblings...to his daddy.

Autism Is....

Many days and nights worrying about our little boy's future.

Obsessions. Many of them. Obsessions over toys, objects, movies, jackets, etc.

Tantrums. Tantrums that are out of Jaxton's control. He sometimes hits himself to let out his frustration. It breaks my heart in two every.single.time.

Sensory issues. Dinner at our house can be quite interesting. Certain textures are too much for him. Certain tastes, smells, noises, lighting, etc.

Lots of staring. Ooooh the staring.

Many moments of frustration, anger, confusion, sadness, self-pity.

Hoping and praying that God knows your true strength...because sometimes you wonder where the strength will come from tomorrow...and the next day...and the day after that.

Not knowing what will happen as he gets older. Will we have to deal with bullying? Will he ever be able to live on his own? Will he be able to have a job? Will he find love? Get married? Have kids? The not knowing can be the hardest part of it all.


Autism Is...

Throwing your expectations out the window. As a parent, you have certain ideas and expectations of what it is going to be like raising a son. You will teach them sooo many things, right?! Wrong. A child with special needs will teach you SO much more than you could possibly imagine teaching them.

Becoming an expert. You read many books, many articles, watch documentaries, talk to others who are experienced with Autism, go to conferences, learn about the newest therapies and research, get involved in the Autism community, etc. In a way, you become a...speech therapist, occupational therapist, psychologist, teacher, doctor, nutritionist, and so much more.

Hugs, kisses and cuddles. Lots of them.There is nothing better than cuddling with Jax on a hard day. He has a way of molding his little self in such a way to where you could lay there forever, holding him, and have no cares in the world.

Feeling so proud and having incredible joy witnessing the smallest of accomplishments. What a wonderful feeling it is to see your child learn something new, say something new, become more social, when all of those things are so difficult for him. It's an awesome feeling.

Meeting new, amazing mommies who have a child/children with Autism. I feel so blessed to know so many truly GOOD people who are dealing with the same thing. They are like family and help me to not feel so alone.

Feeling a love that is so strong, so indestructible, so powerful, so unbelievable, so...heavenly.

Autism Is...a crazy, scary, confusing, joyous, happy, sad, beautiful, frustrating, upside-down world.

At the end of the day, I tuck my little boy into bed and feel so grateful that I have been given the chance to care for this precious soul...no matter how hard it is.

BIG Moment!!

I just had to share a beautiful moment with you all...

 

Jaxton loooves his siblings but hasn't really understood how to do certain things with them. Something he struggles with is knowing how to help them when they need help. For instance, if one of them were to get hurt, he wouldn't really know what to do. He will normally just say to them, "are you okay?" and walk past them. He wants to help and loves them but doesn't quite know what to do.

 

Today, he really surprised me. While playing with his little sister and brother, his baby brother fell down and was crying. I was busy with something and before I could get to Jude, Jax had picked him up, gently held him by the hand and brought him across the room to me. He put Jude's hand in mine and said to Jude, "there ya go".

 

I'm pretty sure I stood there in shock for a few seconds. It made me cry. I honestly didn't know if Jax would ever come to a point where he could see someone needed help and actually understand and be able to assist them. Seriously HUGE. I've always known he adores his siblings but this just made me so, so happy to think of him helping and watching out for his little brother.

 

Proud, proud mommy here.

 

"Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault

"Life does not have to be perfect to be wonderful."

"Life does not have to be perfect to be wonderful."  -- Annette Funicello

I love this.

It is SO true. My life may not be "perfect"... but it is WONDERFUL.

I feel as though I've had a change of attitude over the last several months. I read through previous posts on this blog and realize how far I've come, emotionally. I'm sure it comes in waves and I'm sure I'll go through many rough spots, but I like the way I feel right now. Having a positive attitude makes life so much easier to endure and enjoy.

We had parent/teacher conference for Jax today. I loved hearing about the progress he is making. The word progress is such a wonderful thing to hear when you have a special needs child. A year ago, Jax could not sit in circle time at school for longer than a couple of minutes at a time. He is now sitting in circle time 100% of the time. That is huge for him. Ya know, the old me may have been kind of sad thinking that he should be reading and writing and doing all of the things 5 year old's do...but I'm not. I am thrilled that he is making progress, period. 

What stood out to me even more than hearing he is progressing was the love Jaxton's teacher has for him. She was telling me how much she adores how affectionate and loving and kind he is. She brought up one particular incident that meant so much to her. It meant a great deal to me, too. The other day, she was having a really rough day. Anything that could go wrong was going wrong. She said she felt like curling up into a ball and just crying. Toward the end of the day, she was reading a book to the class. Jax stood up, walked up to her, put his arms around her, laid his head on her shoulder, and looked her in the eyes and just smiled. She said to me, "He truly warmed my heart. It was like he knew I needed that. He knew I needed a hug at that exact moment." 

I am so proud to be his mom. He has such a special spirit...a way of making others feel better. When I'm having a rough day, he has a way of making it all better like no one else can. He will just come up to me and say, "mom, I love you sooo much" in his sweet little voice and it's like nothing else matters.

Heavenly Father knew I needed this little boy in my life. I will be forever grateful for the experience and honor of raising such a unique, special soul. 

 

Different, Not Less...

It's been way too long since I've posted on this blog! I will admit that I typed up a very lengthy post about two weeks ago. I was having a very rough day that day. I typed up exactly what I was feeling. It was not good. While I like to be honest about my "I really dislike Autism today" days, what I typed was a little too honest...if you know what I mean. So, instead of hitting "publish post", I erased it. It still felt good to get it off my chest, though!

I went on a date last night with my eight year old daughter. We were sitting down waiting for our food to be served, and Makailee noticed the man sitting with his elderly parents at the table next to us. She could tell something was "different" about this man. He was a middle aged man with Down Syndrome. She kept looking over at him and seemed so interested in him. I whispered to her and reminded her that it's not polite to stare. She said, "I don't mean to keep looking at him mom. I'm sorry. He just seems...different...like Jaxton. Does that man have Autism too?" I told her I would talk to her about it at home.  The tables at the restaurant were very close so we could easily hear/see all that was going on at their table. This sweet man was telling his parents that he had made breakfast for himself the other day. French toast! He raved about how great his French Toast was. It made me smile. Every single time the waitress walked by to check on them, he was so polite and made sure he said "thank you" each time he saw her. They were all chatting and his dad said something that made him laugh. He laughed so hard and couldn't stop laughing. They were all three laughing together and it was the best sound in the world.

When we arrived home, I had a little talk with my daughter. I explained to her that the man in the restaurant has Down Syndrome. She asked me what the difference is between Autism and Down Syndrome. I explained the differences to her a little bit and reminded her that we are all a little bit different from one another and that is a good thing. She asked me if this man is smart because he kind of seemed like a little kid to her. I asked her if she remembered him talking about how he made French Toast. She remembered. I told her you'd have to be pretty smart to be able to make French Toast all by yourself! She agreed. She said, "that is true! I can't even make French Toast yet!" I pointed out all of his great qualities to her. We talked about how polite he was. He always said please and thank you. I reminded her how great his laugh was. This man is full of love and kindness. He is happy.

Different. Not less.

I won't lie. We have many difficult moments having a child with Autism. We also have wonderful moments too. Many of them. We were at Target today and Jaxton saw something he wanted near the registers. I told him we could not buy any toys today. He asked a few more times and I told him no. He got really upset...started screaming, crying, kicking me, and punching himself on the head. He does this sometimes. The lady at the register was waiting for me to pay. I had several people behind me but they would just have to wait a few seconds. I held his face in my hands, whispered to him to calm him, and gave him a big hug. He stopped crying and said, "Sorry mom. I love you so, so much." I said, "I love you more."

We have an amazing, special little boy and we are so blessed to have him in our family. I am so thankful he is my son.