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 know 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!!

Autism Isolation

As autism awareness month comes to an end, I can’t help but look at our family life. Autism is not something we think about just in the month of April, we live it every day.

The wind is a little chilly but the sun is shining bright. Our little loves were eager to get outside and enjoy all our backyard had to offer. We don’t go to public parks much especially on pretty days. They are normally to crowded for our little guy. The noise can be to much for him and trying to keep him safe while allowing the others to play freely is stressful. The stares and the whispers from the other patrons should not get to me, but it does. So our backyard is our sanctuary. Here he is safe and here our other four can run and play and I don’t have to worry.

Four are dressed in their play clothes while one is in his standard pajamas. It maybe 70 degrees outside but you will always find him in his magic long sleeved flannel pajamas. They are his safety net at home. While our other little loves run and play tag he sits on the sidewalk lining up his cars. He seldom looks up, but when he does it’s for a quick Look Momma look what I did. He loves his cars. He spends hours lining and relining them up. He is perfectly happy doing so.

Today, while we played ball with our youngest daughter, JR came over to watch. We tossed the ball back and worth to our two year old and she giggled as it bounced down the hill. Out of nowhere JR decided to engage and went after the ball. He laughed as he throw it to his dad and giggled as he tried to kick it. For the next ten minutes he played with us and it was wonderful. It was perfect. Then just as quickly as he had joined in he stopped and returned to his cars.

Autism is so isolating at times. I truly believe he wants to be part of everything, he simply can’t. We have had people tell us, Just take him out or Just make him go he will get over it? As if they think we don’t want to go out and do things. But the truth is his happiness and wellbeing are important to us. We know what he can handle and what he can’t. Days that we can make it to church as a family, or trips to the grocery store without a meltdown are considered victories in our house.

If the outside world just took a few minutes to get to know our little guy they would see how truly wonderful he is. He is the sweetest most loving little guy you could ever meet. He is the best big brother to his two year old sister and he loves to cuddle babies. At his school he is known as the hugger because as everyone comes through the doors he is there to welcome them with one of his giant bear hugs. He is not less because of autism he is so much more.

As a mom I love days where we have moments like today. To hear him laugh and to see him run and interact with his siblings is something I will never take for granted. Today was a good day and for that I am truly thankful.

JRs superpower is autism, what’s yours?

Side note:

Thanks to everyone who has bought my book Beautiful Chaos Our Story about Foster Care, Adoption, Faith and Love. If you haven’t done so yet you can go over to the new website at http://www.beautifulchaosmomma.com and pick up a copy. My prayer is that our story inspires others to become foster/ foster to adopt parents.

Beautiful Chaos is now AVAILABLE!!!

Hello everyone,

For those of you who have been following the release of my first book Beautiful Chaos Our Story about Foster Care, Adoption, Faith and Love, the wait is over!! It is now available.

I want to thank all of you who have supported this project in some way. For those that helped me fund the project THANK YOU!! For those that have prayed for the book and for me Thank you!! For those that gave me the encouragement to get it started and then to get it completed Thank you!! I am truly humbled by what is taking place.

Thank you to my beautiful family for allowing me to share a glimpse of our life with the world. Thank you to my wonderful husband who not only lives this crazy life with me but also has had to listen to me over the last few months give him play by play details as our story became a book reality. Mostly I want to thank God for allowing us to be a small part in His beautiful masterpiece. He has allowed us to be part of some many lives on this foster care adventure. He has been my comfort when a child is placed back with a birth parent or relative, He has been my guide when I did not know what to do, He has been my protector when situations have become unsafe, but above all He has been my friend that has walked with me every step of the way. To You oh Lord, be ALL the glory.

This book is for you!

If you have ever thought about becoming a foster parent or have ever wondered what it takes to foster a child, if you have ever thought about adopting, or if you have ever questioned your plan in Gods story I encourage you to read our story. My hope is that it inspires at least one person/one family to open their heart to the idea of becoming foster parents. If one child gains a safe place to lay his or her head at night then everything struggle and every worry in making this book a reality was worth it. It’s all about the kids. Always

You can find the book at the following websites:

WestBowPress.com

Barnes & Noble

Amazon

Check it out and let me know what you think

From our beautiful chaos to yours, may you find a way to make your mark In this great big world. One act of kindness at a time

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.

Education and Autism

Let me start off by saying fair/equal education should be available for ALL children. It’s that simple. No child (or their parent) should have to fight for an education that many take for granted. However, if you have a child with special needs I will warn you it’s a fight. Every. Single. Day.

I will say that where we live now seems to have a better system in place then where we once lived. But it’s still a struggle. All I want, all any decent parent wants, is for their son or daughter to succeed. That starts at home and at school.

My wild man is almost seven. He attends a public school. In order for his needs to be met we have an IEP in place (some states call it a 504) Basically it is a plan that lays out my sons strengths and weaknesses. His plan gives him scheduled speech times and OT times durning school. His plan also calls for an aid to help get him on task throughout the day. Sounds perfect right? I thought so at first.

Last year he was in an autism/special needs classroom. The class size was eight children and eight aids plus the teacher. There was a calming room, sensory toys and tools, and even an OT room. He’s teacher taught him to hold a pencil and he finally was able to write his name. He was excited to go to school. He loved his class and peers. It was perfect and he was doing amazing. To amazing according to the school. At the end of the year it was agreed (I went along with it thinking they knew what they were talking about) that he would be placed in a normal classroom for his first grade year.

Normal, an odd word in the land of autism. Nothing about our lives or wild man is normal. Why oh why did I think this would work. The first few weeks went okay. I think he was excited to be back at school. But as the days turned to weeks and weeks turned to months he slowly started hating going to school. One of the things that aggregate him (okay me) is that he is now expected to do spelling test. I know, I know all kids have to take spelling test. I get that. But he is still working on forming letters, how is he suppose to spell a word if he does not know all the letters to the word? In the last six weeks he has managed to get one word correct. One. One out of sixty. The word was frog. When he showed me his paper he beamed with pride. Look momma I did good. Frog ribbit ribbit. The nine red X’s did not phase him. But they crushed me. Another his personal aid has four other students. How is she suppose to care for my son’s needs when she has four other kids? Thank you budget cuts. He has sensory issues so he eats only a few foods. Two of those being peanut butter and Stage two peas, yes the baby food peas. Well he can’t take peanut butter because someone in the other class has a peanut allergy. As far as the peas, a boy in his class called him a baby for eating baby food so those are now out as well.

He is lost and I don’t know what to do. Part of me was so excited to hear he was doing so well at the end of last year, but part of me worried that he would get over looked and left behind in a regular classroom. My fear as become his reality. He hates going to school now. And even though he can’t articulate why he hates it I have a feeling I know why.

So, I started looking for a new school. And I thought I had found one. It was a private school so the classroom sizes were small and they worked on an individual plan based program virus the whole class learning the same thing. It seemed to be the perfect school, until I was told how much it would cost. One year over 12,000 dollars. Wow. We are a one income family currently with six little ones in the house. There is no way we can afford that kind of tuition or justify it. That’s when it hit me, we need public schools that specialize in special needs. Why should it cost so much more for them to receive a descent education?

It’s time for better education for my son and all the other children who have autism, or Down syndrome, or any special need. Why should they get left behind or overlooked? Why should their disability be a magnet for educators or providers to charge more for their services? Have you looked at the cost for some of the sensory products or equipment for those with special needs? It’s insane. What’s a mom to do?

We fight. Day in day out. We become the face the principal and staff at the school dread to see. We make sure our concerns are being heard and that they are being met. We become moms like Maya DiMeo off of Speechless. We go in demanding and we don’t back down. Ooooh good you’re here...again

The fact is I would love for my son to be what society defines as normal. I think all special needs parents feel that from time to time. It’s natural for us to want our children to fit in. But the reality is he is not. He was made to stand out. No matter how hard he tries or how much I pray he will never be “normal” and that’s ok. God made him in His image so my son is exactly how he is suppose to be. He may learn different,act different, and talk different but different does not make his less. As his mom it is my job to make sure everyone sees that.

I will fight for you, for your education, for your independence, and for you to be excepted. Mostly I will fight so others can see you the way I see you. My brilliant, creative, funny and loving son. Don’t worry wild man, momma’s got this!