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.

I had a stroke at 42

When I think of Living Wills I think in the future. I see myself at 80 or 90. I’m older, my kids are grown, my life feels complete. Never once did I see myself at 42 with my little loves surrounding me hoping that an ambulance or someone would get to me in time.

But that’s where I found myself on March 29th. Home alone with my five little ones… having a stroke with no one around.

The kids had been at my parents for a few days for spring break. I had picked them up earlier that day and now we were relaxing at the house. My three year old asked if we could exercise while my eight year old rolled her eyes and the boys played. I looked at the clock and figured I had time for some push-ups and a shower before I had to start dinner.

We were both acting silly and giggling, working out with her is so much fun. At the start of our third series I became real dizzy and extremely hot. I laid my head down to catch my breath while little miss continued to dance away. She laid her hands on me and asked mommy you ok? I tired to get up but I could not. My five year old son ran in screaming he wanted popcorn. It took everything in me to pull myself and walk into the kitchen. I tried several times to type in two minutes for the popcorn and could only get numbers like 55 or 33. I knew that was not correct but I knew I could listen until the popcorn stopped popping and get it out. I made four small bowls and told the kids to come. When I went to walk into the living room everything went dark. I was yelling for my kids to come but I could only get out “Sierra” over and over. After a few minutes my eight year old came out saying “Mom Sissy is NOT here stop yelling for her!” I placed my hands on her shoulders and tried to explain I needed help but all I could get out was “Sierra Sierra” By the look on her face she knew something was wrong. She looked for Sissy in my phone but could not find her but she did find her dad. I hit the auto dial and heard him answer, I tried to talk but it was broken. He knew something was wrong and called the ambulance and raced home.

Time stood still. My kids, two of whom have autism, were running around unaware of how bad mom really was.

The ambulance pulled in and the kids flipped out. The Lights.The sirens. To much stimulation for my little ones. They come in and I tried to get them to shut the door but no one understand me. My son was running towards the door, if he got out he would be gone. The paramedic saw me getting upset and asked what could she do I pointed at my son by the door and my five year old and with every ounce in me I managed to get out “both autistic” Her eyes locked on mine and she understood without me saying anything else. She got wild mans attention and closed the door.

I could hear the kids crying and asking where’s mommy going questions but my mind could not focus on anything. I was rushed out the door to the waiting ambulance. The EMT’s assured me that they would watch the kids until my husband or parents could get to the house.

The ride to the hospital was a blur. I remember opening my eyes and hearing them ask my husband a list of questions. He was holding my hand and he looked terrified. They turned to me and seeing the look on his face I told them to save me.

I could not feel my left side. The hours turned into days. My memory for the last six months is simply gone.

But by God’s grace I survived.

With therapy I have regained the use of my leg. My voice is becoming stronger and clearer each day. Ironically the spinal cord stimulator that works my left arm, thanks to a car accident in 2000, that tells my nerves to “work” continued to tell my nerves to “work” even though my brain was telling them no shutdown.

I don’t recall much about those days in the hospital. But I do know God placed me in the right hospital to get me to the right rehab center where I was blessed with amazing physical therapist and speech therapist. Those ladies and the other patients I met while there saved me.

I may never be the person I was before my stroke. I may never fully recover my memories or have the answer to why this happened to me. Heck it’s taken me a month to type this short post, I’ve missed writing and you guys. But I do know I am still here. I survived. With each day I will get stronger. My kids still need their momma and I still have a lot of love to give.

And that my friends is something worth celebrating.

Celebrate the small victories, those are the ones that happen every day ❤️

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!!

His Community

My son had an appointment with his geneticist earlier this week. Driving four and a half hours to see a doctor may sound crazy to some but with him when we find a doctor that works we stick with them. We made a mini vacation out of it.

On Sunday, after my parents arrived to watch the rest of our little loves, we loaded up and headed south. To keep himself busy JR packed his backpack with his LEGOs, his Five Nights of Freddy’s LEGO figures, a notebook with three pens, his tablet, headphones, juices, gummies, BBQ chips, and and a large bag a popcorn (you know all the essentials for a road trip).

He was so excited he could barely sit still. The idea of staying in a hotel had peaked his interest. We don’t stay in hotel rooms often, normally when we vacation we have to rent a cabin, hotel rooms aren’t made for large families. Most of the conversation going down was about the hotel room. Questions like; where he would sleep, would there be food, could he stay up all night, and how long would we be staying.

As we got close to our destination I told him we were going to meet up with his old bus driver for dinner. He had the biggest smile come across his face. Momma I get to see my people? I can’t wait.

His people.

We made it to the restaurant and I scanned to see if there was a table close to the door. He does not do well with large crowds or noise. We don’t go to restaurants that often because of this. My anxiety was high. I knew we needed a table close to the door so we could get out fast if it became to much for him. There by the door, as if God knew we would need it, was table it just needed to be cleaned. Perfect. We sat him close to the window with my husband by his side. I sat directly in front of him. When his bus driver came through the door he started jumping up and down. She asked to set beside him so my husband moved and sat with me. I was nervous he would try to run without one of us right beside him but he didn’t. He was so excited to see her. For the next 40 minutes he colored on his menu, played his tablet and drank his “kitty cat shake” (Kit Kat shake) We caught up on all the local news and filled her in on all the things he was doing back home. I have never seen him be so still in a restaurant. It was a moment I will not soon forget.

We said our goodbyes and passed out hugs and headed to the hotel. He was fascinated with everything in the room. He loves office chairs and he was over come with excitement when he saw the office chair and desk in the room.

The evening was spent exploring the room and taking a bath. It was a relaxing evening.

He of course woke up around 5 the next morning. He is such a happy child when he wakes up. After watching a little TV we gathered up our things and headed out the door for some breakfast. Again we had to go inside a restaurant. I was hoping the buffet would have Cheerios, but it did not. Only oatmeal. He does not eat oatmeal. My husband picked him up some yogurt hoping everything would eat it. After a few minutes inspecting it he decided it was safe to eat even though it was not his normal orange cream flavored, he would try the strawberry. After eating he and I explored the gift shop while his dad paid our ticket.

We made our way to the doctors office and the appointment went well. He had more tests done and he talked up the nurses, he is such a little flirt. The doctor went over the previous test results and we scheduled a follow up appointment. We were there for two hours. Our boy did well but he was beyond ready to leave when the time come to go. So as a reward we took him to Chucky Cheese. Being a Monday morning we had the place practically to ourselves. We bought him a play pass and he bounced, literally, from game to game. He LOVES arcade games. He has several handheld ones at home but he was in heaven being able to play “big ones”.

After our Chucky Cheese adventure we headed over to his old school for a visit. The secretary knew we were coming and quickly buzzed us in. Everyone he ran into smiled and greeted him. The secretary told us his teachers class was in the cafeteria so we got our visitors badges and headed that way. That’s when it happened.

We cut the corner to the cafeteria and the room erupted into squeals and giggles for our little guy. While his teachers class was not in there all of his old classmates were. 30 plus first and second graders all waving and saying “hi JR” “look it’s JR” “hey buddy” “are you coming back?” We miss you!

JR was stunned. So was I. Here he was included in regular classes. He had so many little ones help him throughout the day. He had friends. True friends that miss him.

We made our way to his teachers room and he was greeted with hugs from everyone. It was still lunch time so he was able to go over to his favorite toys and play while the other students finished up. We visited for a little while and then had to tell him it was time to take a picture with his teacher and aide. He paused. He knew if it was time to take the picture it was also time to go. He fought back tears while we took the photo because he didn’t want to leave. This was his safe space. Here he was loved, included, and one of them.

It broke my heart to leave.

The car ride home seemed to take years. He talked about seeing them again and when would we go back. He misses all of them.

Don’t get me wrong, he loves his teacher here. She is amazing and absolutely adores our little guy. But it’s different. His old bus driver was texting me and calling me to make she she got to see him. His new bus driver, I’m not even sure he knows our little guys name. The school here is much smaller and autism is not something he hear talked about. There autism was not a bad word, they taught about it and included kids with autism in everything. They were not those kids with autism, instead they were friends.

He misses his friends, and I do too. I’m not sure he will ever have those bonds here. And that makes me sad. He deserves to have friends just like every other child. He deserves his people.

I will continue the fight for him to be included, to be seen, to be loved just as every child should be. Together he and I will find his people here. I know they are around we just have to look a little deeper.

Be sure to pick up your 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=1553170235&sr=8-1-fkmrnull

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.