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.

Grief and Autism

Many have asked how JR is doing.

So with the okay from my mother-in-law, let me tell you about a boy and his best friend, my son and his papaw.

Losing someone you love is hard at any age.  Its hard to wrap our minds around the idea that our loved one is not here physically anymore. It’s hard on adults to process the loss, so just imagine you are seven and autistic.

I was blessed to have my father-in-law in my life for over eleven years.  He was one of those guys that loved to help everyone. I swear he never met a stranger. If he had it and you needed it, well then it was yours.  His smile was infectious and that laugh, oh how I miss that deep belly laugh.  I did not know him as long as most, but in my time with him I discovered how much and how deeply he loved people. And you know what else? He loved being a papaw.

When my husband and I got married, my in-laws became instant grandparents to my two preteen children.  When my husband and I decided to become foster parents, they were on board with the idea and were excited for the journey that awaited us all. And from the moment our wild man was placed with us, all of our worlds changed.  From the second he came to us, so tiny and so sick, I knew he was ours.  And on a cool day in September 2013, two and a half years after wild man was first placed in my arms, papaw Jim(along with our whole family) was in the courtroom with us as JR became forever ours. JR had us all wrapped around his little finger from the beginning. But the two of them had a special bond. They were inseparable.

JR went everywhere with papaw.  Whether it was to the grocery store or down to the wrecker (tow truck) shop, it didn’t matter to them. He was so excited when papaw bought him his own car seat for his truck.  JR loves that truck, and he loved going bye-bye with his favorite person. My father-in-law never saw our JR as a child with autism, to him he was just his grandson. His beautiful, full of energy, always laughing, popcorn eating, adventure seeking grandson. 

After the “twins” arrived to our home, my father-in-law offered to start taking JR to his OT, speech, and music therapy appointments on Fridays.  It quickly became their thing.  My in-laws would pick him up shortly after I got our daughter on the bus and off they would go on their weekly adventure.  He loved spending his Fridays with them.  My father-in-law also filled in for us at his preschool when they would have special days or field trips that my husband or I could not go to.  He always found a way to make sure JR was included in everything at the school. He became more than just JR’s papaw, he was the classroom’s papaw.

In my son’s words, Cancer sucks ass. And he is 100% correct, cancer does suck ass.

My father-in-law was the healthiest sick man I have ever known.  He never complained or questioned why him, at least not in front of us.  He always had a smile on his face when he was around the kids.  They never seen him as sick. Hearing the words, he has cancer, took months for all of us to process.  How could he get sick? He was our rock. The doctor’s had to be wrong. He was a fighter. He did everything he could to stay strong and beat the hand that laid before him. As the days turned into months and he became weaker we tried to prepare ourselves and the kids. We explained things to our little loves in a way that we hoped they would understand, but how can we expect them to understand when we don’t fully understand ourselves? 

Halloween night, I called to see if he was up for some trick or treat visitors.  I drove my twelve passenger van through the sea of candy hungry neighborhood children so that our kiddos could get to papaw and mamaw’s house. Papaw made his way out to the porch and stood while holding the back of a chair. He made sure to tell all the kids he loved them and made sure they all got more candy than they needed. JR asked if he could go get a prize out of the treasure box and of course he was gone before anyone could say yes. We visited for a few minutes and gave hugs goodbye and off we went. When we got back into the van the first words out of JRs mouth were, momma papaw must be getting better. He was standing tonight. I will forever be thankful for this last memory he gave to our kids. I know it took everything out of him to come out and stand and pass out candy. But he did it for them. And he did so with his signature smile on his face.

JR did not just lose his papaw. He lost his best friend.

There has not been a day that papaw Jim is not mentioned at least a thousand times by our sweet boy. JR can not process what has happened. He is fixated on the why’s and how comes. He is lost without his number one fan. He loves for us to tell him things the two of them done, and he always has a few of his own stories to share. He sleeps with the flashlight he got out of the treasure box on Halloween night. And he talks to papaw’s picture he had me hang in his room. He asks if we can make an airplane and take a trip to heaven and he is full of questions about cancer and death. Some days he is happy, knowing he will see papaw again other days he cry’s non stop for he misses him more than anything.

The two of them shared a love of the ocean, swimming, and eating cheese flavored popcorn. They loved “fixing” things and taking drives. There will always be a great big place in JRs heart for his papaw Jim. And because of JRs unique look on life I know for a fact papaw Jim will live on through him and us. He may not physically be here with us but his spirit is strong, especially around our wild man. I know when JR is in his room and I ask, who are you talking to? And he replies papaw Jim, I know that he really is. Thank you for looking in on him. Life will be hard without him but you can bet JR will remind us of something the two of them did that will bring a smile to our faces daily. Their relationship will live on through the memories they made.

So thankful for the memories, precious, precious memories. In JRs words, Heaven is an extra special place now with papaw Jim in it. Yes it is little buddy. Yes it is.

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

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.