I Remember Life Before Autism

I remember sleeping in past 5am. I remember friends calling on a Friday night. I remember date night with my husband. I remember Sunday after church dinner in an actual restaurant. I remember people offering to babysit. I remember friends just wanting to come over and hang out.

Things before autism were so carefree. I did not know what an IEP was or what ABA stood for. My days were not booked with OT appointments or Music Therapy. I did not have to fight for equal education. I did not worry if other children or adults would pick on you.

But you see my sweet beautiful boy, if it were not for autism I would not have YOU.

You are my heart and soul. You make my days bright. Your laugh can light up a room like no other. You have no fear. You love planes, trains, and the pool. You love to draw pictures and play on your tablet. You are trying so hard to play with your brothers and sisters.

Yes we have days (sometimes weeks) were things are hard. Really. Hard. And in our world we just take those days one at a time. We go to bed, sleep on it, pray for a better day tomorrow and start all over in the morning.

We are working on behaviors and unlearning some not so good words that you picked up in school last year. But we can’t sweat the small stuff. (Hopefully you will not say them in front of the pastor.). Life with autism is anything but boring.

Before you my sweet boy I was scared of autism. I didn’t understand it. I didn’t know anyone with it. Our lives have changed in many ways. Our circle of friends has gotten much smaller. We order our groceries online to avoid the crowds. We do at home vacations instead of going away now. But I would not change a thing. Autism has been a blessing to me, because it gave me a son like you.

Shorts made Me Cry Today

This make photo may look like a typical second grader heading off to another day at school. However, to those that know our little man this, is so much more.

When he was two and a half our little guy stopped eating meat. A few years ago he went from wearing shorts and T-shirts to long sleeve flannel. It could be 90 degrees outside and he would wear his magic pajamas outside. If autism as taught us anything it’s to be patient and to except what we don’t understand.

His magic pajamas are his safe place. He knows when he is home (or traveling in the car) he can be himself and no one will judge. We have received several rude comments and have seen the stares as we travelled when we stop at rest areas or restaurants and my adorable son would climb out of the van in all of his flannel. I can handle those that judge, my top priority is his happiness and wellbeing. Yes I worried about him become to hot, I’m his mom it’s my job. Imagine my surprise when he decided today he wanted to wear shorts to school.

As he was eating breakfast this morning he looked over at the TV. The weather man was talking about the heatwave and mentioned that today’s high would be 95. As he took a bite of his Cheerios he looked up at me and said, “momma that Man says it’s hot. Me need to wear short pants today.” I looked at him and said it was going to be very hot and that I thought shorts would be a great idea. It’s been three years since he wore shorts. Three. Years. Did I even have shorts that would fit him? Could his swimming trucks pass as shorts? No then he would think he was going swimming, can’t do that.

I ran through the house frantically looking for a pair of shorts that may fit before he changed his mind. With today’s high, shorts would be much more comfortable than his jeans. After trying on three pair we found a pair that he said would work, blue light weight basketball shorts. (Perfect, mental note to self go buy more shorts like this in a variety of colors). He even wore a T-shirt instead of his button up dress shirt. Today was a huge day of change for him. Today I will not worry if he is getting to hot on the playground. He prefers to wear button down dress shirts with jeans to school. He calls this his school gear.

I am sure when he returns homes this afternoon he will come in and the shorts will come off and his magic pajamas will go on. And that’s perfectly fine. We have learned to celebrate the small victories. And today was a victory. The thought that he understood it was going to be really hot today and wanted to wear shorts is huge. Who knew a simple pair a shorts could make me so happy. Here’s to small victories, Momma tears, and blue shorts.

24

It is hard to believe that you’re 24 today. Where do time go? How did it happen?

From the moment I knew about you I knew what my purpose on this earth was. Was I scared? Yes. Very much so, I was young, only 18, and God had in trusted me with the job of being Your Mom. Not just anyone’s mom, yours, how could I say no? But still the questions were there: What in the world was I to do? What if I was a bad mom? What if you did not like me? All the what if’s flooded my mind. And then you arrived and all my worries stopped.

At 12:49 in the afternoon you made your grand entrance. All 8 pounds and 13 ounces of you. You by far, and yes I may be a little biased, were the prettiest little girl I had ever seen. You were mine and know matter what this world would throw our way my job was to protect you. Above all I was to love you like I had never loved another. I had a propose, I had you. My beautiful little one.

As the days turned to years we had our share (I know it is shocking to many lol) of ups and downs. We had our good moments and our not so great moments, but even in those not so great I hope you know I was doing what I thought was best for you.

Because of you, I was given the strength to get out of an abusive marriage. You saw something in me that was worth fighting for. You had seen the struggle and convinced me to get out. Thank you for believing in me when I did not fully believe in myself.

Now ten years later daddy T and I could not be any more proud of you. I can’t believe we are so happy and have so much joy in our lives. Who would have thought that after so much darkness there could be so much light? I know I didn’t see five little loves joining our forever family. Did you? So thankful God believes in second chances at love and happiness.

And soon will come September and God will bless you with your own special little guy. The love you two will share will be magical I am sure. I can’t wait to see you as a mom. I know that you will be fantastic, God had big plans for you. I look forward to seeing you grow into mom life, to hold your hand when you think you have failed ( but trust me you will do great ), to wipe a way your tears and to let you know how special you are. We have come so far and I am thankful God has given me to gift of being a Lolly aka grandma. I look forward to seeing where this adventure takes us.

I love you Sie Happy 24th Birthday!!

Fighting Insurance Company’s for Services

Life in general can be hard. Being a parent can be hard. Being a parent of a child with special needs can be… you guessed it hard. Really. Hard.

As many of you know my husband and I are the parents of seven amazing and uniquely different children. Our oldest daughter and son are biologically ours. Our five little loves are adopted. All five of our little loves have developmental delays. Four have Attention Deficit Hyperactivity Disorder, two have Oppositional Defiant Disorder, one has Reactive Attachment Disorder, all five show signs of Fetal Alcohol Syndrome Disorder, and after receiving test results last week three have autism.

I would like to say I was surprised by the diagnosis but I’m not. Nothing surprises me anymore. All the signs were there. Sometimes you just have to have a doctor say it out loud. Our eight year old is what doctors call, high functioning. Our seven year old falls in the, moderate range. And now one of our five year olds also falls in the, high functioning range.

What have I discovered with having three on the spectrum? I have discovered that there are not enough services in our area. Actually there are not enough services in our state. And that makes me both sad and mad.

Our children are covered under the state Medicaid program. As part of the adoption they will receive a medical card until they turn 18. Its the states way of saying thank you for taking in and adopting this child. The medical card covers their treatments well in most areas. My husband also added the kids to his insurance to cover anything that the medical card did not.

Our seven year old needs extra therapy. He no longer qualifies for early intervention services. He is lost in the unknown. While we lived in Tennessee our children had a variety of services. There was Occupational Therapy, speech, and counseling services. They had even set up Applied Behavior Analysis services for the kids. Our seven year old was blessed to be in a school that provided these services in house. They were receiving everything they needed and life was good.

Then we moved back home.

I am so sick of fighting. So sick of the, we don’t cover that, statement from the insurance companies. And so tired of hearing, we don’t have a provider in your area. The closest ABA therapy center to us is over an hour and thirty minutes away. That means we would spend three hours in the car to make the visit happen. As any mom who has a child on the spectrum, I agreed to do just that. He needs the service and I will do whatever I need to do to get him the services he needs. I was happy in the fact I had finally find someone who was able to help. Imagine my disappointment after I got there, and had taken a tour of the facility, when they said, oh sorry we can’t except either of your sons insurance plans.

The Medicaid card covers services at 100% if the service is something they cover. Applied Behavior Analysis is not one of those services. It’s not covered okay, my husbands insurance should then pick up the difference. Wrong again. His plan does not see Applied Behavior Analysis as a needed service for our son. So here we are, we finally found a place but now that the new year has rolled around and new plans are in effect, we can’t provide basic services our son (and possibly our daughter) need. Explain to me how is that possible?

According to the Centers for Disease Control 1 in 68 children are on the autism spectrum. With numbers like this shouldn’t there be more providers to help? How can Medicaid not pay for services needed? How can major insurance companies not see the need for these same services? How can our children be covered under two different insurance plans and still not be able to receive services? I’m at a loss.

Yes we could pay for services out of pocket, the lady at the center told me so (how nice of her) but let’s be real. We can’t afford that. No one can afford that. I don’t care if you work in fast food or your a chief executive officer, paying out of pocket for services is expensive. Period.

West Virginia is in the middle of a huge debate over bringing in a Managed Care Organization to take over their Medicaid billing services. Instead of paying out 30 million dollars to someone out of state to “manage” payments how about spending that money to pay for services our children actually need? How about bring more providers that specialize in Applied Behavior Analysis or Reactive Attachment or other therapy programs for those for need them. Crazy thought I know, but as a parent who has children that need these services it’s my thought.

It’s hard being a parent in today’s world. Add on the fact that our children have needs makes it overwhelming at times. We fight for aides in classrooms (that’s a whole different post) we fight for Individualized Education Programs, we fight for equal treatment, we fight for normalcy. We fight for our kids.

And I will continue to fight. Why? Because they need me to be their voice. They need someone to stand up and say they matter. They need someone to say we need services for our children in our areas. I will continue the fight because I have to.

The fights are long, the fights are loud, the tears will fall but it is worth it. Worth it all.

Never give up the fight.

Pick up a copy of our story over at beautifulchaosmomma.com or on Amazon at https://www.amazon.com/gp/aw/d/1973619784/ref=tmm_pap_title_0?ie=UTF8&qid=1551187379&sr=8-3-fkmrnull

Teach with what He likes

Reading, writing, and arithmetic. All skills we need if we want to be successful adults. But what happens if learning these life skills does not come easy? What happens if one simply can’t learn these things. What happens when professionals tell you, your son is autistic don’t worry about those things just stick to the basics like eating and brushing his teeth.

What would have happened if I had listened to them?

From the moment the caseworker placed him in my arms I knew he was special. Over the next two plus years we cared for him, loved him while he was in foster care. In my heart I knew God had big plans for him. At the age of two and a half he become forever ours when we were able to adopt him and I was thrilled to know that I would now get to see those plans unfold. At the age of three he was diagnosed with autism and I thought all of those big plans would be forever lost. My world came crashing down. What were we to do now?

The thing about getting the diagnosis is it makes what you already know real. You may not want to admit it but deep down you know something is wrong. We knew something was different, we knew he was not meeting milestones like his peers, and we knew some of the things he did were odd. But the day we received the diagnosis our normal world stopped. It was hard to hear it from someone else.

We could have thrown up our hands and accepted what people were saying. He may never be able to talk, He may never be able to eat on his own, He may never do this or that. The list of “he may never’s” was endless. But the thing is, I could not look at this little boy, my little boy God had placed in my care, and say you will never. I could not give up or give in to the diagnosis. After all it was only one part of our special little man, it did not define who he was or who he was meant to be.

We live in an area where specialized therapist and services are very limited. Even now in order for him to receive ABA therapy we will have to drive over an hour each way to get him there (he is still waiting on a wait list for these services) That being said he has been blessed to have wonderful people helping him from the beginning. People who did not give up. People who believed he could rather than he could not. His Birth to Three team (early intervention) was absolutely amazing. His OT, Speech, and music therapists opened up doors we never thought possible. His teachers, preschool up through his current second grade teacher have worked with him and have helped him find his own way of learning.

So how do we go from learning basic things to helping him learn things such as math? We work with what he loves. And he LOVES NASCAR.

I think it’s the repetition of the cars going round and round the track, or it could be the big crashes. I don’t know what it is, but I do know NASCAR has helped him learn how to do math. At first we would show him a car and talk about the driver and number while he lined them up and down the hallway. Then he started counting them. He would go 1, 2, 3. 1,2,3 over and over. As his lines of cars got longer so did his ability to count. Now that he is a little older he will line them up in numerical order.

The last few weeks he has been working on simple addition and subtraction at school. So to help him we use the cars and do math problems. For example we can ask him, What is 4 minus 3? He will take the Kevin Harvick car (#4) and subtract an Austin Dillon car (#3) and end up with a Jamie McMurray car (#1), 4-3=1. Math made easier with NASCAR who would have thought? (I know these are last years names and numbers. He does not have the 2019 cars yet shhhh don’t tell him)

My point is never give up. We will never give up. We look for things that spark his interest and use them to help teach him. If we would have given up like so many people told us to his life would be so much different today. Yes autism is hard. Yes there are days I wish he didn’t have the struggles he has because of it. But his life is not less because of autism. His life is full of giggles and smiles, hugs and high fives. And thanks to NASCAR (and his teacher’s throughout his years) he now has a love for math.

So Thank you all who have crossed our path that never giving up on him. And Thank you NASCAR for opening up doors we never thought possible.

Be sure to check my book Beautiful Chaos Our Story about Foster Care, Adoption, Faith and Love on Amazon.

Looking Back on 2018

Happy New Year!!

Hello everyone.

Can you believe it’s 2019?! Where in the world did 2018 go? I guess the Gretchen Rubin saying is true, The days are long but the years are short. 

As we settled in for a night of movies, popcorn, pepperoni rolls, and giggles with the littles I could not help but look back at what the past year looked like for our family. What a difference one year makes.

Last January we were in Tennessee. We were fostering a beautiful little girl. She fit in perfectly with our little loves. That was actually her second time with us. Man I miss her sweet smile, the sounds she made while she slept, and the way she took in everything around her. I am happy she is now with family members that can care for her the way she needs to be. For a moment we thought she was meant to be ours, God had other plans for her and for us. So we will continue to pray for her, her parents, and those taking care of her. Baby Peaches will forever be in our hearts.

In March she went to live with her grandmother, and our lives went back to our normal. The kids were doing well in school. My husband was busy at work. All in all things seemed to going well. I became a published author in March. Beautiful Chaos Our Story about Foster Care, Adoption, Faith and Love hit Amazon (and some bookshelves) on March 14. I never thought it would happen, but it did. It finally did. Some dreams are meant to be reality. In March my mom and I were able to attend a Women of Joy conference. Powerful messages and wonderful worship filled three amazing days. While there I had the pleasure of meeting Lisa Harper in person. Her testimony is so touching. Her books are amazing. Being able to give her a copy of my book and get a copy of her book was amazing.

In April we welcomed a very tiny sick little boy into our home. It was just for a week until his grandmother could get things in order at her house so she could care for him at her home. It just happened to be the week of Easter. What a perfect week to have him with us. He was able to attend one of the most memorable Easter services I have ever been to. He was prayed for and prayed over by our pastor and his wife. And even though he was only with us a week he too will have a place in our hearts. Its not about the amount of time we spend with someone, its about what we share in that time that matters.

May brought about a trip with my oldest daughter and my momma. The previous Christmas Sierra and I surprised my mom with a tickets as one of her presents. My mom, recently retired, had always wanted to take a cruise but was never able to go. My dad does not care for the ocean so Sierra and I decided we would take her and make it a girls only trip. We had a blast. Seeing my mom so happy and excited was truly one of the highlights of my year. Maybe we can make it a yearly thing? Maybe.

My mom, daughter, and I sailing to the Bahamas

May also changed things. My father in law was not doing well. I’ve said it before and I will say it again cancer sucks. He was fighting a losing battle and time with him we knew was growing short. My husband and I started talking about moving back home but it was not as simply as “just moving home”. The thought of taking JR out of his school scared us. I knew our other little loves would adjust fine, but him, we worried about him. His needs are much different than theirs. We prayed and talked and talked some more trying to figure out what was best for all of us.

June we received a call for a little girl and welcomed her into our home. She was a bundle of joy. Always laughing and by far the best sleeper we had in a long time. Our little loves loved having her with us.

I was not feeling the best and after talking with my doctor I was scheduled for a hysterectomy in mid June. During the pretesting the doctor discovered something wrong. It appeared that I had had a mild heart attack. I was floored. I’m only 42. The doctor had more tests ran and it was later determined that it was not a heart attack just a heart issue (still not completely sure what happened or what the issue actually was.) But truly thankful whatever it was God saw fit to fix it. Thank you Jesus!

With my health scare and Todd’s dad sick we made the decision to move back home. We needed to be closer to our families. I brought the kids up and they spent most of the summer at my parents home. I would travel back and forth between to two states. We still had our foster daughter and she had visits and meetings we could not miss. When we knew for sure we would be moving (still in the middle of all my testing on my heart) we discussed her case with her caseworker, her GAL (guardian at litem) and her mom. The decision was made that she would be placed in another foster home where she could continue to thrive while her mom worked her plan to get her back. It was with a heavy heart we had to let her go. The day I dropped her off to her new foster family was hard. We did not plan for her stay with us to end like it did. Last I heard she is doing great and her mom is working hard on things to one day have her back. I pray all works out.

August arrived before we knew it and we closed on our new house, the day before school started. Talk about crazy timing. Todd was still working in TN, traveling back and forth to see us and his dad. School brought about new schools, new teachers, new everything for our kids. It was a difficult time but thankfully everyone is adjusting well now.

October we celebrated Halloween. We had the Ghostbusters along with the Marshmallow man and the cutest little Dale Jr I’ve ever seen. That would be the last time the kids and I would see my father-in-law. It is still so hard to believe he is gone. I am thankful for the memories he gave to my kids, to me. He was truly an special man.

November is a blur. That’s when our world changed forever. When Jesus called him home. He fought a hard fight. We went through the motions at Thanksgiving. I cooked. I wanted my mother in law’s Thanksgiving to go as smoothly as possible. My orders from my seven year old were to make sure she was happy. JR knows she misses him for he too misses his papaw. They were inseparable. Not a day has went by he has not asked about him or how he can get to him.

December my husband was able to finally move home. After our TN house sold and things at his work slowed down he was able to transfer back up here. Having him home has been the best gift. We are once again under one roof. We are stronger when we are all together. Christmas was a busy time, with our five little loves and our daughter and her boyfriend, and our son and his girlfriend, our house was filled with laughter and presents. Lots of presents. There were laughs and some tears, but over all we had an okay Christmas. We missed papaw’s laugh and smile, I guess that’s something we always will.

2018 brought about many changes for us. Life is about change. We must learn to live life and love the people we are surrounded by. We must forgive others and forgive ourselves. We must be patient with what’s going on and see where God leads us. In 2018 we made some new friends (stopped talking to a few). We discovered we are stronger than we realized and our faith grew. Our hearts were broken and tears we shed many times, but through it all we had each other. I am not sure what 2019 will hold for us. And that is the beauty of change. My prayer is that whatever life throws at us in the new year we learn from it, we grow from it, we are blessed by it, and we embrace it. Through it all may God keep us and guide us all the way.

From our beautiful chaos to yours, May 2019 be a very blessed and exciting year.

Check out my book over on my website at beautifulchaosmomma.com or on Amazon https://www.amazon.com/Beautiful-Chaos-Story-Foster-Adoption/dp/1973619784/ref=sr_1_3?ie=UTF8&qid=1546358274&sr=8-3&keywords=beautiful+chaos+paperback

What’s Best for Him

Our school year is well underway, our little loves are adjusting to their new teachers, bus drivers, and schedules….well most of them. Our littlest guy was not adapting well at all. While his brothers and sister were excited to see what their new school’s had to offer them he was terrified. Completely. Terrified. This year he would be in class without his brother. This year he had a male teacher. This year he would start without knowing anyone. Kindergarten can be a scary place. His preschool had some worries about him starting kindergarten. Academically he was ready. He knows all of his colors, he can count to 100, he knows his shapes, and he can write all the letters not the alphabet. He can even correctly spell his full name. He can even sign the alphabet (forward and backward) I think he is pretty smart for a new five year old. But kindergarten is more than A B C’s and 1 2 3’s. Socially he is not ready. We tried the kindergarten class, but within a few days we knew it was not going to work. His teacher said he would stay to himself, he would not answer (or even acknowledge) anyone that asked him a question. He basically shutdown on us all.

He did not want to get up in the mornings. He cried as we went to the bus. He would not talk about anything that happened during his day. He didn’t want to go to bed at night because he knew he had to get up and go to school the next morning. Our happy, go lucky, always making a joke kid was miserable. My momma heart broke for him. When the school called for our meeting I knew something had to change.

As I sat in a room with teachers and staff that barely knew my son, I questioned if we/I was doing the right thing for him. If I stuck to the plan with him staying in kindergarten he could come out of his shell in a few weeks/months and everything could be okay. He could also be completely miserable and in the end fail kindergarten and have to repeat it again next year. Or we could place him back in preschool and help him build on his social skills and possibly transition him into the kindergarten class a few days towards the end of the year and that way he would be ready for kindergarten next year. The choice was clear. He needed another year of preschool. But how would he adjust to yet another change this year?

Part of me wants both of my five year olds in kindergarten together. But I want what’s best for him, not what I pictured life would be. He needs this. His teacher knew I was worried about the decision we made, so she sent me a few photos through this first day. I can’t tell you how much those photos meant to me. And when he got off the bus from his “second first day” the smile on his face said it all. He was happy, so very happy.

I hope as the years go by he understands why he and his brother are not in the same grade. I hope he understands we did what we thought was best for him. I hope he understands that every decision we make is in hopes of giving him a better life and giving him the best opportunity we can. But those are all questions for a later day. For now I will focus on the smile on his cute little face and know that he is happy and feels comfortable in his new class. Here’s to a great preschool year!!