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.

Student of the Month

There are moments as parents we catch ourselves thinking about as our little loves grow up. There are the early questions, When will he walk? When will she talk?What sport will she play? Will he be in the band? And then questions that come as they get older, Will they go to prom? To college? Will she get married? Will he be okay? All questions that have ran through my mind more than once.

As an autism mom, some of even these simple questions leave me in tears after a long evening of stimming and repetition behaviors. Most days we fight the good autism fight. Our lives are arranged around what he can and can not handle. Is it always fair to our other little loves or our older two children? No, no it’s not. However life as we know is not fair. We do the best with what God has given us. And what He has given us is beautiful, chaotic at times but beautiful.

With my first two children, I was the typical mom. We had piano lessons, dance lessons, taekwondo practice, a little t-ball, and soccer. Then came high school and it was marching band, jazz band, color guard, concert band, winter guard, and still taekwondo, They received awards for most everything they participated in. I have a filing cabinet full of awards, still waiting to be scrapbooked. And while I was taken back if they didn’t win something, I didn’t worry about it because I always knew there would be another award/trophy around the corner. Then JR came into our lives.

Autism is so misunderstood and so complicated, yet beautiful and full of surprises. With JR we are not in a hurry to run from ball field to ball field, he could care less about sports. With him we get to see life through his beautiful heart and mind. He has taught me so many things about slowing down and enjoying the small things out of life. Not getting called up during an assembly to receive an award like the other students phases him not. But if I’m honest with myself, it bothers me a little. Ok maybe more than that, maybe more than it should. I know he could be that one in a million that becomes a childhood prodigy, but I know my son. I know that he is beautiful and funny and the happiest kid you will ever meet. I also have come to the realization that he has autism and that’s ok. He is exactly how he is supposed to be. My perfect little sometimes rotten wild man. But sometimes the “normal” mom in me becomes sad at the thought of a life he will never have.

So when my normally quiet seven year old came bouncing in from school, I knew something was up. Then I received a text from his teacher asking me if he had told me about being named Student of the Month? When I asked him about he got the biggest smile on his face. He told me all about hearing his name “over his head” (the school speaker) and how everyone knew his name now. He called his dad and told him about it, and then his big sis. He was so excited because it will mean that Santa would hear about it and maybe just maybe bring him an extra special gift at Christmas. Being student of the month is special momma. Maybe Santa gets special gift for me cause I did so good.

I asked him what kind of special gift he wanted from Santa, you know so I could pass the information along I was floored by what he said. He was not asking for a new plane, or new NASCARs, or LEGOs for himself. My son asked for a new kitchen for our house. I stared at him with a puzzled look and then he ran over to show me what he was talking about. On his tablet he had created a whole house for us. In the center of the house was a beautiful kitchen. From the cabinets to the flooring everything fit so well together. It’s the table(island) you like right momma? I can change the lights if you like. I fought back the tears. Instead of using his “extra gift” from Santa to get himself something he was thinking bigger. He was thinking about all of us. He truly he a special kid.

I don’t think Santa will be getting us that new kitchen, my boy has very expensive taste, but I’m sure he will get something extra. This beautiful little human has taught me so much about the importance of loving others and embracing life. I am so happy he is a happy child. Way to go wild man!!! Momma loves you!

I am so thankful he is adjusting well to his new school. We have been blessed with teachers who see his true potential.

We have also found some wonderful worksheets for all of our kiddos over at Education.com be sure to check them out

Your kids will love ‘falling’ into the season with this word search activity! Be sure to check out more language games and worksheets at Education.com

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!!

Today was a Good Day

What a great day, just what we needed. Today was well overdue so I am thankful.  The last few months have been brutal.  This was the first weekend in over six weeks that everyone in the house was feeling well.  The month of February alone our little loves had four double ear infections, three cases of the stomach bug, two upper respiratory infections, four fevers, one cutting teeth, and then my husband had the “man cold”.  We all know that last one was the hardest on all of us, right ladies?  I don’t know how we didn’t catch the flu, but praise God it spared us.

On top of all of that we received test results back from the geneticist for Alex.  It has been confirmed he has Alcohol Related Neurodevelopmental Disorder (ARND).  Eli with his chronic stomach issues was given the diagnosis of Underdeveloped Bowel Syndrome. And I was told I would have to have back surgery again.  When it rains it pours.

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Today it was time to get out of the house and forget about all the bad stuff and just have fun.

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I stumbled across a local autism group called Autism Site Knoxville (ASK).  They were hosting their fourth annual Day at the aquarium today.  When I saw the invite last week I thought it would be the perfect way for us to spend a Saturday morning. And how could we pass up the low cost of only 10 dollars per person?  As the day came closer however all the normal mom worries started coming to the surface.  We had not even made it to church in two months how in the world would the kids do at the aquarium? Would it be to crowed for JR?  How would he do with the noise? What is he had a meltdown? How would my husband and I handle it with all the other little loves in tow?  This would be the first big outing that we had done in months and we would be doing it without the help of our older children or grandparents.  Not going to lie I was a little overwhelmed.  But when your four hours away from family you got to go out on your own at some point. With our family its just a much larger challenge than most.

So this morning we loaded four very excited and two very sleepy children into our 12 passenger van at the wee hour of 6am so we could drive a little over two hours to be there when the aquarium at 8:00.  The event ran from 730 to 1030 but of course we were free to stay longer.  I am so glad we went.  The staff was super sweet and handed out goldfish, gummies, and water to the kids as we came in.  Being that early in the morning the kids were able to walk around and enjoy all the different tanks without being ran over by other people.

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The event organizers had different sensory stations set up throughout the aquarium so if JR or even our other kids wanted to take a break they could.  The lights were softened and the background music was turned off. Everyone there got it.  Everyone there was living in the world of autism.  There were no nasty remarks about behaviors, or looks when he made his unique noises, and no one stared at us.  Okay some people did look at us but it was not because of JR it was because of the size of our crew lol.  He rode in his stroller for a while then walked with me for a while. He pointed out the scary sharks and the huge sea turtles.  And he made it known he did not like the seahorses, after all real horses don’t look like that.

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He made friends with other people waiting outside and made sure to tell all the moms we passed just how cute their babies were.  And no one cared that he was talking to them or touching them.  Most told him thank you or even told him he was a cutie as well, to which he would just laugh and smile.  He really enjoyed himself. Our other kids had a great time as well.  We don’t get to do things like this often unless we have our backup team to help us in case he has a major meltdown or takes off running. He has no safety concerns at all.  So thank you ASK for making today possible.  Thank you for hosting events like this so that children and adults with autism can go and do everyday things.  Thank you for opening it up to all of our children so that we could attend as a family. Thank you for a day we will not soon forget. Thank you for giving us a day were all of our kids could just be kids. Thank you for helping this mom see her son really enjoy himself today.  Today was a good day and we so needed a good day.

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Looking at His future

We had our mid-year parent teacher conference for Wild Man last week. I knew by the marks on his papers things were not going great in the traditional classroom. As a mother of a child who has autism, these meetings are dreaded. I know he is not on the same level as the other children his age, I know that he is falling behind, and that bothers me.

As I chatted with his speech therapist and his autism teacher before going into the meeting I addressed my concerns. They both shared stories about my little guy that brought smiles to their faces and told me it was natural to be concerned but he was really doing great. When his teacher was ready we walked in together and sat down. His teacher went over his test scores which were extremely low. She explained that he does not do well with timed test which was part of the problem but the test are mandatory so she had to give them to him. She then explained that even though it does not show up on the written test my Wild Man has grown leaps and bounds in class. He is starting to use full sentences, he is holding a pencil, he is engaging with other students, he is setting in his seat for at least 10 minutes at a time, he is making friends, and he is making eye contact here and there. All wonderful new skills for my son but all things that standard testing do not look at. I was excited to hear he was doing so well, relieved in many ways.

But I still questioned things like his spelling words, he has spelled one correct out of the last sixty. Only one. Math is a struggle. And homework when he does have it is a nightmare. I don’t want him passed just to be passed. I also don’t want him overlooked. He falls in the middle. He is doing to well to be in the autism room full time but he is not up to level with the regular class. He is somewhere in between. I am thankful he has an aide to help him through the day.

As we discussed plans for the remainder of the year one of his therapists said they wanted to help give him his best possible life. His best possible life. That phrase hit me hard.

As a mom I have thought about all of my kids futures. I see them all doing things like going off to college, getting jobs, moving out, getting married and starting a family. With Wild Man I want these things as well but I also know they may not be a reality. He may never go off to college or hold a traditional 40 hour a week job. He may be with us for our life time. If something happens to myself and my husband who will care for him? There are so many questions and concerns I have about his future, I worry but I can’t let it consume me.

He is in good hands right now at his school. They understand my concerns and they are working on goals they feel he can reach. They genuinely care about him and his education. I could not ask for a better staff of teachers and therapists to be working with him. he has been blessed with wonderful teachers since his preschool days. We will take this one day at a time. I have a life time to worry about his future, for now I will enjoy my silly, loving, crazy little boy. We will get through this together just as I promised him the first time I held him. After all autism is not who he is, autism is just a small part of what makes him my son. My wonderfully, sweet, amazing, brilliant son. I am so lucky to be his momma.