A Letter To My Child with Autism.

My sweet boy,

I'm writing you this letter that I know you will most likely never read, mainly because I will probably hide it from you.  I have a lot that I want to tell you, but with you only being 7, I feel like this may be too much for you so I will let the public read it instead.

There are things that, if I had the power, I would change to make your life better.  But my job isn't to change the past, but to make your present and future the best that I can.

I can only imagine the struggles you endure in silence every day.  I will never know the extent of your confusion or how your brain processes stimuli.  I will never understand why you are stimming constantly for days in a row and then nothing for weeks.  It kills me to know that you're going through something that I can't see or understand.  I try so hard to try to put myself in your shoes, but there is no way to know how you feel until you are able to communicate with me about it.

I have seen when kids have taunted you or made fun of you, it infuriates me.  I try to educate them because they will be the kids that you will grow up with to try to get them aware and be supportive of you.  I hope and pray that you don't hear their criticisms.  You are the happiest kid in the world, and I'll be damned if the opinions of others, especially kids that are supposed to be your friends ruin your outlook on life.  Just last week I had to explain to a boy why you talked "funny" because I saw him mocking you.  You of course didn't notice, but I did and it broke my heart. After I talked to him about it, I had to hold in my tears and frustration until we were in the car.  I try to not cry in front of you about these situations, but sometimes mama's shield of toughness doesn't do its damn job.

It's been me and you since you were one.  I'm sorry that your dad isn't around.  I'm sorry that you weren’t  lucky enough to have one of those great dads.  I'm sorry that it took me months to explain to you that you didn't have a dad, because you started to notice that other kids had dads.  But you know what? We are doing just fine on our own.  We have each other and you have the best Nana in the world.

I'm sorry that we have to fight about you eating.  Kid, I know you would love to live off of chips and M&M's, but that's not cool with me.  I make you drink your meal replacements drinks because I love you, and you need to stay healthy.  So let's not fight about that anymore.  I think one day you will realize that I'm the "boss".

I absolutely love you, but sometimes I hate Autism.  I hate the struggles that you have to endure in silence.  I hate the constant worry.  I hate the fact that I want the best life for you but that I have to fight for services to help you.  I mostly hate the uninformed population that judge you based off of one meltdown in public.  Screw you judgemental people. I'm not in the mood for you.

You are a strong, resilient boy, and you amaze me daily.  You are VERY stubborn (which you get from me), and we have our moments of who has the higher ground, but Jaxon you have my whole heart and nothing will ever change the way I look at you in awe.

Love you,

Mama

Underestimating My Child With Autism

WHY DO I ALWAYS UNDERESTIMATE MY CHILD WITH AUTISM???

Since Jaxon was diagnosed with a Autism in 2014, I’ve always pushed myself to be strong enough, smart enough, and loving enough to deal with whatever Autism threw our way.  One thing that I still haven’t been able to do is to stop underestimating Jaxon with everything he does. 

A lot of parents live in fear. Fear of the unknown.  Fear of the future.  Fear that one day on a family outing the unthinkable will happen.  You're child with either have a meltdown or wander off.  Or have a meltdown and then elope from the situation.  My main fear was how do I keep Jaxon safe, but still include him in the things that typical kids enjoy doing.

Today was our town parade.  It was also Jaxon's first parade.  Now Jaxon is almost seven, and some may think that it is weird that I waited so long to take him to a parade.  But I know my child, and until this year I worried that he would either run in front of vehicles, run away from me, or melt down because of the noise.  Those fears plagued me for years so we just never went.  But today was the day that I realized that I underestimate that beautiful boy of mine.  He stood next to one of his cousins and waved and yelled "hi" to everyone that passed by.  He had the sweetest giggle when candy was thrown towards him and he thoroughly enjoyed picking it up and keeping it.  Now there were a few times where he got too close to the vehicles but he listened pretty well and he kept having fun.  Anybody who was around would've assumed that he was a typical kid wanting to get as much candy as he could.

Now I'm never one to make it seem like Jaxon is unable to do things.  He can do anything he wants in life.  He is strong-willed and I love that.  But I, as his sole parent have to be there to guide him and to keep him safe.  Before we do anything new whether it be a parade, a dentist or doctor visit, or even going to the grocery store, I always tell myself that it will probably not end well.  I try not to get my hopes up because I never want Jaxon to see my face become a face of disappointment.  So I keep my fears quiet and act normal with Jaxon when we are in a new situation, but I am fully aware and ready to act if I need to.  And you know what?  Most of the time he rocks it!!!  We leave those situations in our dust! 

A couple of months ago I took Jaxon to a pediatric dentist because I figured if he was going to need any work done he would have to be either fully sedated or at least a little loopy.  We went in and in my mind I told myself, "he may not sit in the chair, he may not let them do anything and that's okay".  We at least had to try.  I had my mind set on Jaxon not going to do well.  But guys, my kid is a rockstar! He hopped in that chair and let her brush, he even took x-rays, which as a dental assistant, I figured he wouldn't be able to do.  I was so amazed at how far my boy has come to be able to sit at the dentist and do what was expected with no meltdown. 

The parade and the dentist are just two stories of how I wanted to kick myself when we were done because I underestimated Jaxon.  Now there have been times when we do have a meltdown in a store, and I'm already in the mindset that that will happen.  I like being prepared.  But what I love even more is being so proud of my kiddo at what he can do!!!  The sky is the limit with these kids.  We just need to be there to help them along and catch them if they fall.

Parents, I think it's fine to prepare for the worst when you're in a new environment.  You need to be ready.  Most of us have an escape plan if a situation turns ugly.  But what I don't agree with is limiting your child's place in this world because you're afraid that something bad, or embarrassing will happen.  Don't avoid going to the park.  Don't avoid trying out the new restaurant in town.  Just go for it.  Just prepare for the worst and when your sweet child excels in the situation, you can be blissfully surprised.

Tantrums VS Meltdowns

Tantrums VS Meltdowns

Most people think that when a child with ASD is throwing a fit that they're a spoiled child and that their parents need to punish them more.  What people on the outside don't realize is that child is having a meltdown, not a tantrum.

A tantrum is basically throwing a fit to get what you want.  Once that child gets what they want the tantrum stops.  Tantrums are goal-oriented.  The child will watch you for a reaction and will avoid getting themselves hurt.  Tantrums need to be ignored and the child needs firm boundaries.

A meltdown is completely different.  When a child has a meltdown, the part of their brain responsible for executive functioning completely shuts down.  Stress hormones flood their body and temporarily, they are literally incapable of controlling their body and emotions.  They are unable to consider consequences or listen to reason.  

When a child is in the middle of a meltdown, there is no reasoning with them.  You have to nurture and comfort the child.  Keep them safe from things that they could be hurt by and remove them from the situation.  Once the child is regulated and no longer rushing with emotions, you can talk to them about their behavior.

Meltdowns are not goal-oriented.  No demands were made before or after the event.  The child has no interest in your reaction.  They do not care how others react to their behavior.  The child may end up hurting themselves.  They are reacting on a primal level of being overloaded.  They don't try to avoid injury and may be injured during the meltdown.  Meltdowns are slow to end.  They last longer than tantrums, and slow down only when the child acclimates to surrounding at their own pace.  Children during a meltdown are not in control.  Because they are massively overstimulated, they're put into survival mode and react instinctively to the distress they're in. You cannot "snap" a child out of a meltdown.

Usually in most cases, the child will act like nothing happened once a meltdown is over.  It's almost like a blackout moment.

Jaxon has really only had a few absolutely horrible meltdowns.  Most of his meltdowns start out as him throwing a fit because he didn't get his way, and his body and mind become emotionally dysregulated and BAM a meltdown starts.  One meltdown occurred because Jaxon wanted me to back my car in instead of me parking like normal.  He started throwing a fit when I refused to move my car.  Eventually it escalated and became a meltdown.  It was intense!  A few times I thought it was over and it would escalate again.  It was about 2 hours before it was fully over.  Another time, we went to the grocery store after church.  I had to grab a few things and Jaxon's usually a good kid in the store.  Well again he became dysregulated and I had to keep him from flipping the cart over on himself and eloping out of the car.  

I've share the grocery store story on my Facebook page along with the videos that I took.  Jaxon is such a fun goofy kid and it broke my heart to see him like that.  But once it starts you have to ride it out like a storm.  It's heart-wrenching watching your sweet 6 year old turn into a violent, yelling tornado and all you can do is sit there and make sure he is safe until it's over.  Being helpless is the worst feeling. As a parent you want to fix these things, but when your child's brain is wire differently, there's nothing to do.