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.

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!!