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.

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.

Lost Tooth

Losing baby teeth is part of growing up. I remember one time when my oldest son was around five. He had lost a tooth at my then mother in laws house and the tooth fairy traded him ten dollars for his tiny tooth. To my son (and me) that was a lot of cash for one tooth. A few days later he jumped off the couch and hit the table, just as he had planned, and out come another tooth. He was so proud as he showed me the bloody tooth and his lip. Unfortunately for him at our house the tooth fairy did not pay out as much. That stunt was never tried again. Thank goodness.

Awe memories.

Last night was yet another big tooth event in our home. Wild man does not tell us a lot of things when it comes to physical pain. So when he told me his tooth was squeaking, I had to check. Sure enough it was moving. He has lost teeth before, most of them we only notice once we see the empty space in his mouth. One he lost at school in an apple slice, he was excited to bring that one home apple and all. So for him to notice his tooth was moving is a huge win for him (us). All day his tongue wiggled that tooth back and forth. I offered to help but he insisted he could do it on his own. Independence something I have prayed for him to have. And then it happened. That tiny little grinded down tooth popped out.

His sister told him to do’s and don’ts of leaving a tooth for the tooth fairy, at the age of eight she is a pro. He wanted to make sure we placed it under his pillow, so we did. He made sure it was well protected. His plane, his bumble, and his body sock all placed in the way he wanted. He paced back and forth for over an hour making sure everything was just right.

He went to sleep with ease (which is not something he does) all in the hopes of getting treasure from the tooth fairy. When the first signs of the early morning light come through the bedroom window he was up. The tooth fairy had given him some money and even left his tooth as Wild Man had requested. He wanted to add it to his treasure box, how could the tooth fairy say no?

Such a normal everyday event, and yet I have cried my eyes out.

There are so many days I would give anything to get inside his mind and see the world he sees. Today our worlds come together over a small tooth.

This evening we continued the celebration with a movie night. He is starting to interact more with our other boys, where as he use to only parallel play along side them. As we watched Frozen (thank you Freeform) the boys asked if he wanted to have a sleepover in their room. I carried in his mattress while the boys brought his bag of cars, his rocket, his treasure box, and the all important blue light lamp. They wanted him to feel safe and made sure he had all of his favorite things.

Again I’m in tears.

As they get older they are bonding, as well as siblings can when autism is a factor. Tonight was a good night.

I am thankful for lost teeth and sleepovers. What are you thankful for this evening?

Hard Days

Have you ever wanted to run to the top of a mountain and just scream? I’m talking the type of scream that has hot tears running down your face, your whole body shakes, sweat pouring off of you and it solves absolutely nothing but you continue to scream anyway type of scream because no one can hear you. The type of scream that makes you feel better for just a split second but you know the pain that will follow in your throat for days to come. The type of scream you scream where no one else can hear your sadness, your isolation, your frustration, your pain. The life as an autism mom has these days, today in fact was one of those days.

I’m getting ahead of myself, let’s back up.

Like most families we have our days. We have days that are good, days that are okay, a few great days that give us the strength to continue forward and then those days were I feel like a complete failure. Meltdown after meltdown. Nothing. Going. Right. Days. These days drain everything ounce out of me. This day started around 4am this morning.

I knew when we went to bed it was going to be a long night. I saw the signs.

I had to tell him daddy was on call this weekend so he would not be in to see them. Big Sis had told him she had plans to go to a football game so he would not see her for a few hours. My other little loves were excited for the weekend and the noise level in the house showed it. He paced the floors in a circle around the couch. He held his stomach as he does when he “needs to go” I check his calendar, it’s been four days, he will probably go this evening. I make a mental note to take extra pull-ups and wipes to bed with me. By nine all the kids are sleeping, even him, but he is not resting. He tosses and turns in his bed. I hear him groan as he sleeps and I know his belly hurts. I drift in and out of sleep because I know he will need me soon. Around midnight he yells and I run to his aid. He can’t sleep know, he is wide awake, I make his pullout bed in my room so he can feel safe. He finally drifts off to sleep around two and I can finally close my eyes.

Then it happens. 4am comes with screams of complete terror. I jump up but can’t see a thing. Complete. Darkness. I am frozen for a split second until my ears lock on his scream. Power outage. I’m not prepared. All I have is the flashlight on my phone. Why oh why did I not unpack the candles? He makes his way to me he is now wide awake once more no sleep for us now. With every noise, every sound he hears and his mind wonders. By five two more of my little loves join us in my dark bedroom. They are also scared. I must be brave even though my heart is racing. Finally around seven the sun begins to break through the clouds. The scary night is over, a new day can begin.

But his routine has been changed. Nothing will be easy today. I try my best to make it work but it does not. Daddy is suppose to be here today. He is not and our wild man does not understand. Things spiral. Lack of sleep is not helping the situation. We load up and drive to my parents. He is happy to see them, but notes that he sees them on Sundays not Saturdays. He writes me a note letting me know he loves me, hard days are less hard when he gives me notes like these. A few hours at their house was helpful, maybe the rest of the day will be better. Cue meltdown number three.

Car ride home. Sister singing. Brothers laughing. Sister yelling for brothers to stop. Noise all around. I ask them to calm down, I fear it’s to late. To much for him to handle. So it starts.

Hitting. Kicking. Screaming. His body takes over. I get us home. I try to hold him, try to contain the storm within him, but he is not a small two year old anymore he is a 65 pound seven year old that is stronger than an ox. I really wish my husband were here. A few hours, yes hours, pass and the storm is once again my sweet loveable little man. He says things like, I sorry momma, I will not bite myself again momma. Momma today a bad day. He cries. I cry. I pray for rest tonight but can see it will be another long night. Days like these are hard.

I try to be honest about how life is. I try to let those that want to know how things are going, how things are actually going. But no one really understands what it’s like to have a child with autism unless they have a child with autism. I try to make things as normal as possible around here, whatever that is, but there are days I feel so isolated. There are days I feel like all I do is scream both figuratively and literally. There are days I wish I could get in his mind and figure out the why’s and why not’s. People say we are lucky because he can talk now, and we are blessed he has found his voice. But that does not make his autism less hard. It’s hard. So hard.

I look over at him. He is finally fast asleep in his pullout bed right beside my bed. He is at peace. He feels safe and that’s what’s most important to me at this point. I set here on the top of my mountain screaming inside knowing no one hears me. I pull on my invisible super mom cape so that people see what they want to see, so they don’t feel obligated to pretend to understand or worse give me advice on what I should do when he acts out. Tonight as I look at him and know we made it through a hard day we pray for strength to get through future hard days. We pray for a better days. An easier day. I pray I can be the mom he needs me to be. And I give God thanks for making me his mom. God knew we needed each other on days like this. Tomorrow is a new day.