Sorry I’m not Sorry anymore!

It was brought to my attention recently that I’m always saying sorry for things that my son does.  At first I denied this but the more I thought about it these friends were right.   And I asked myself WHY am I apologizing for everything that he does?!  I don’t know.  I guess I feel bad, guilty, even embarrassed at times for his behaviors.  But you know what?  I shouldn’t.   Because this is who Sam is.  So I’m not apologizing anymore!   These are the things that make him unique.  All kids are unique in their own way.  Mine just shows his uniqueness more often than other kids do!   When you have autism you will say things without thinking first that it may hurt someone’s feelings.  Your actions and words may be upsetting to a friend or even an adult.  You may not grasp this or you can’t explain yourself as another 9 year old would.  When you go places you will make noises, you won’t keep still, you may stand too close to someone, you may hug them or even kiss them.  You may grab someone’s arms or even worse do something more inappropriate.   You will touch things they might not want you to touch, at their home, at a restaurant, at school, wherever.   You just can’t help yourself.  You may catch yourself and try really hard to control your actions, especially at school.   But once you’re somewhere that you feel more comfortable you’re going to do as you damn well please.  You may break things but not on purpose.  You may put soap on a mirror and open the medicine cabinet doors so you can’t see yourself.   You may stick your hands in a bowl of tortellini because it just takes too long to use the spoon to scoop them out.   You will close the internet and laptop on your parent in the 1 second they walk away even though they were in the middle of working on something.  No matter how many times your parents or therapists tell you not to do something, redirect you and teach you more appropriate behaviors and ways to interact with people, you may still struggle.  This is just how your brain works.  Even with a medicine to try and rewire it.

As a parent to a boy with autism this is my life every damn day.  These are the things that my kid does every day.  We constantly teach our son what is right from wrong and recently he just doesn’t seem to care.  Or maybe he does but he just keeps testing us.  I’m not sure.  We can rarely have a deep conversation with him and get inside his head.  It’s the ongoing puzzle peace to the mystery of autism.  Lately the behaviors have been over the top.  TMI but I feel the need to share…for instance he now has an obsession with itching his butt and immediately wiping his hands on me!!  This totally grosses me out and if you know me you know that I am a bit germaphobic and want him to immediately wash his hands.   But is he doing this for attention because he knows we’re going to say something to him?   And he just gets a kick out of it?  Again I don’t know but yesterday it was just the 2 of us at Panera.  We finished eating and he itched his butt and immediately wiped his hands on me as we were sitting in the booth!!  I was fuming!  I got right up and told him he was going to wash his hands.  He hid under the table!!  I had to contain myself from not losing my shit at that moment and again told him he was going to the bathroom with me NOW!!   I took him into the women’s room (sorry not sorry- can’t trust him to do it alone) and got him to wash his hands and I washed my arms.   As we walked out of the restaurant I told him that he’s never to do that again to me.  He got mad and told me not to talk about it.   I let it go for that moment.

This is autism.  I have many more stories but this is the one for today.  Please educate yourselves and teach your kids to be understanding and caring individuals, have patience for others who may have difficulties playing with their peers or socializing in a group setting.  They’re not trying to be mean, or do things to you on purpose.  They just can’t express themselves like you can.   It’s an ongoing teachable moment on both ends.  Be kind and don’t judge as you never know what another mom or child is going through.

Signed- one emotionally exhausted mom

Mad, Angry, Confused…and Happy again!

How does a child go through so many emotions in such a short span of time?  Mine does.   I picked him up a little early from after care camp today and it cut into his time using the computer (watching mindless Minecraft videos).  You cut my time short.   I just started on the computer.  Ok I get it and know my friend said her kids say the same thing if she gets them too early.   We walk out into the hallway to leave.  Did you bring me a snack?  Nope.  Oh I should’ve stopped at home first to get you a snack before coming to pick you up.  I’m sorry.  Yes, you’re right I should’ve thought of you first and got you a snack.  (Note sarcasm here)  No we’re not stopping anywhere today.  No dunkin donuts.  No McDonald’s or anything else.   We’re going straight home for ABA therapy as they will be waiting for us.   Oh yes you’re right again I never think of you and don’t even care that you had a bad dayI’m the worst mom ever.  Yup you’re right. Oh and now you don’t even want to be at after care anymore?  You want me to pick you right up at 4:00 even on the day I’m going to work until 4:30 at my new job?   I’m sorry that my work schedule has caused such a ruckus in your schedule.  I haven’t enjoyed it at all, believe me. I drive home with said child yelling the whole ride home and a kick of the seat here and there.  I ignore him.   He’s not happy.  Neither am I.  I take a right at a light near our house.   Oops I drive over the curb.  Scared me.  Oh yes son you must be right that mommy purposely drove over that curb.   Sure scared me.  Maybe if I wasn’t boiling up inside and trying to concentrate on ignoring your demands I could focus more on driving.   Finally we’re home and thankfully a few minutes later our magical fairies (ABA therapists) swoop into the house and up to the angry child’s room where he ran right to with the ipad.   Minutes later I hear laughter and they’re playing games!   Oh thank you my wonderful girls!!   I’m beyond grateful for their help which turned the entire night all around!!

Summer of 2017!

Funny how it’s been 1 year again since I’ve written!!  This time of the year definitely brings a lot of changes with school ending and summer camp starting!   Sam finished up 3rd grade and had a great year!   Of course after getting used to a new teacher, classmates and so on..the 1st quarter is always the hardest for him.   During the yearly IEP meeting in January we realized he was struggling a bit and though he had an IEP and was in an inclusion class he didn’t have “special education assistance” written on his IEP.  He was asking for assistance a lot, was talking out loud a lot/interrupting, slightly impulsive and hyper (getting out of his seat to move around).   These are all symptoms of autism but could he have ADHD as well?   We did take him to a new Developmental Pediatrician and after much consideration decided to start him on a low dose ADHD med.   We noticed a slight change right away at home and his teacher noticed the difference in class, (he was previously constantly moving, on top of me/in my face obsessively, interrupting us where we couldn’t even have a conversation, it was as though his body was on overdrive and couldn’t stop).   We increased the dose a little and have kept him there since the spring.   This medication has helped him out tremendously and although I’m still not a fan of having him medicated I’ve come to realize that right now he needs it, just like I need my medication.   (That’s a story for a whole other post)

Finishing up 3rd grade means he’s done with elementary school in our town…over 6 years in one school. It’s so hard to say goodbye and let go. He’s sad and going to miss his friends and teachers. I’m sad but overjoyed with how much progress he’s made in the 3rd grade and since he started in preschool in a full autism class. Nonverbal. Detachment issues. Difficult transitions to and from school. The list goes on. But we knew that underneath it all was a bright little boy who had so much to say and show us!!! You make us so proud Sam!!! Every day. Even on the difficult days I try to see something good that you teach us….onto 4th grade!!!

 

 

Just one day!

Just one day!!   That’s all I ask for and kept thinking about this past weekend!  Just 1 day without any “added stress”, loud noises, name calling, arguing (from the kid and dad).  Just one day of being able to go somewhere and TRULY ENJOY ourselves as a family for MOST of that time; whether it be at a restaurant, friends house, playground, cookout, etc!  Is that too much to ask for?!   Autism doesn’t allow that in our lives right now though.  I can’t blame Sam, though we want to.  It’s not his fault or at least I don’t think it is.   Autism has a hold on him and makes him compulsive, obsessive, controlling and very loud!!    It doesn’t care where we are and who we’re with.  It doesn’t care how exhausted we are and if we can deal with anything else!  It just carries on whether we’re on board or not!  Some days I want to hop off!  I don’t want to be on this rollercoaster ride anymore!  Because that’s what it is!!   We have highs and very lows.   We have progress and regression.   We feel that we socially belong and other days feel all alone and want to explode!!   We wonder when for many things.   When will our child have his first sleepover.  Will he have close friends beyond the elementary school age?   When will kids start to be more aware of how others act?  Just the last few weeks I’ve heard other comments from kids about the things that Sam does.  One kid thinks he’s mean because of how he acts at the before and after school program.  Of course there’s less structure there so he’s going to act up and feel more free to be “himself”.  I heard from another girl about how he likes to hit his butt and push into others.   I just hope these kids will be more open to him and know that it’s the autism.

When can we feel that we’re able to relax and have him be at a playground with a friend or have a buddy system, that we don’t have to constantly be watching what he does every second, in fear that he will wander off with someone else, be impulsive to another kid or other things that run through my mind?  This weekend at a 4th of July outing we went to a friend’s cookout and walked over to a playground.  There were TONS of people there and he moved quickly along from one play structure to the next, while following a friend around.  I was tired from trying to keep up with him (but also keeping my distance in an attempt of not smothering- these are 8 year olds after all)   I finally stood back against a pole while keeping my eye RIGHT ON HIM!  But he’s so QUICK and he surely didn’t make sure to see where I was while he whipped around the playground in a circle.  He could’ve quickly wandered off or someone could’ve grabbed him.  All the other kids had a buddy or stayed together as a group. Not my kid!!  And this is when I say to myself- can I just have 1 day to be somewhere and not worry about my kid or deal with the constant behaviors that autism brings?   Can his dad be patient and calm and enjoy the day too?   Because lately and quite often it seems easier just to stay home and not to even try to be sociable, to plan fun things for our kid when it’s too stressful for us.   But we don’t.  We can’t.   Because then autism would drive us crazy at home and would truly win.  And maybe just one day my 1 wish will come true!!  Quiet.  Calmness.  Enjoyment.  Pure love and laughter as a family….just 1 day!

Summer of 2016!

A year has passed since I’ve written.  It’s not that I haven’t had anything to say.   I always have lots to say and feel as though most of the time I have nobody to talk to or I’m too emotionally exhausted to talk and so I hold it all in.

2nd grade was completed and just this morning Sam said to me “I can’t believe I’m done with 2nd grade and will be going into 3rd grade in September.  Are you proud of me”?  YES, I am!   We are!  We are VERY proud of all your accomplishments at school!!   He loves school and academically does very well!  He’ll be in another inclusion class for 3rd grade and receive speech 2x a week.  He doesn’t receive any other special ed services at this time but they are available if needed.  He’ll have lunch bunch again to help with social interactions during lunch time.

Of course with summer brings increased behaviors for Sam!   He loves school and was sad when the school year was over.  He’s constantly on the move (except when he’s playing with legos or on the ipad).  He’s VERY LOUD with lots of noises and name calling to us or just out loud in general.   We try our best to ignore and redirect but man it’s hard and very stressful at times!!    We do have him on a good schedule (I think and hope) this summer.  Currently he’s going to a 6 week Arts for Youth program through our local college.   He seems to like it and is learning many new things; radio and video acting, animation, creative computers, dance, band and more!!    After 3 days the Program Director did ask me for some ways to help him/deal with him being too touchy with another boy, him denying that he was doing this and loud screeches in the hall.  I gave her suggestions from myself and also Sam’s BCBA.   A few days later and I haven’t heard anything from her.  Of course I will check in again with her soon to see how things are going.   We’re also busy with karate 2x a week and home ABA therapy 1x a week.  He’s done with spring TOPs soccer for the summer as well as Sunday school and cub scouts but will restart those in the fall.   Have to keep him BUSY!

He has a few friends that he likes to get together with from school.  He loves going to monthly Kids Nights out at our local gym.   We love it too as we get to leave him there for 3 hours of fun for him and quiet time for us!  ha!!!    He also loves monthly Home Depot workshops and going to his social skills group at Piecing the Puzzle.   He still LOVES his legos, pokemon cards, shopkins, transformers (new for him) and his IPAD!!!  He won’t ride his bike and doesn’t like playing outside unless he sees a few of the younger neighborhood kids.  He has no interest in playing with his typical peers which bothers me but I’ve learned to let go of it.  As long as he has interests in playing with other kids, I don’t care if they’re younger than him.

 

 

Essential Oils

We started using essential oils for Sam, for his sensory seeking behaviors, aggression and meltdowns.  They’ve helped A LOT!!

You have to start off with 1 oil at a time so you know what works.  I started at nighttime with lavender before bed on the bottom of his feet.  Then added in cedarwood.  After a week or 2 I started them in the morning to help with his anxiety to go to school.  I made up a roller bottle with the cedarwood and lavender and then added vetiver which is great for anxiety.  I’d have to go back and look at my notes but eventually I also added valor in.   So now he has lavender, cedarwood, vetiver and valor.  Some people add in frankinsence too.   This combo took some time but finally helped him remain calm in the morning and not be so scared to go to school.

For his meltdowns we’ve had success with tranquil roll-on which is roman chamomile, cedarwood and lavender.  This has stopped his meltdowns in their tracks!  craziness!!

The rest I just make up as we go.  One time recently I did a mix of valor, frankinsence and stress away when he was upset, crying and getting mad at me and he calmed right down.  He is stubborn and doesn’t like me always applying them during the day so I’ve pulled back from that.   I was trying to use them for homework time and will still work on once school starts again.  There’s many great options out there with these oils from Young Living!! www.youngliving.com

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This morning Sam had his karate class which involved lots of jump and jacks, running, kicks, punches and more!!  He did GREAT!!!  He’s in a class for kids with autism and sometimes I wonder if we could be transitioning him into the regular class but I hear there’s a BIG differences in the class with what is expected from the kids, etc.   So I think we’ll keep him here for now.   We get home and he’s WIRED; running into me, climbing on me, blowing on my neck and more!!  I literally cannot have a conversation with my husband without him coming back for more physical connection with me.   We take him into the living room and did some work with him that I’ve been learning from his weekly occupational therapy appts.  Here’s more ideas for deep pressure and movement.  We did some rocking, bear hugs, rapped him up tight with a blanket and took a weighted ball to squeeze down his bottle as if he was a hotdog and the ball was ketchup.  haha!   It’s kind of funny but he loves it!!!   After about 15-20 minutes of this and we were trying to get out of the house he was still seeking something more.  I said it’s time for oils and we got his bottle which has a blend of valor, vetiver, lavender, cedarwood, thieves and humility.   That was exactly what he needed!  Maybe it’s the scents which goes right to your lymbic nerves:

Interaction with the Limbic System (Emotional Brain)

During inhalation, odor molecules travel through the nose and affect the brain through a variety of receptor sites, one of which is the limbic system, which is commonly referred to as the “emotional brain.”

The limbic system is directly connected to those parts of the brain that control heart rate, blood pressure, breathing, memory, stress levels, and hormone balance (Higley & Higley, 1998). This relationship helps explain why smells often trigger emotions. Knowing this, we can hypothesize how inhalation of essential oils can have some very profound physiological and psychological effects!

“Smell is a potent wizard that transports us across thousands of miles and all the years we have lived.” Helen Keller

 

Support network

Do you have a support network?  Parenting a child on the autism spectrum is HARD!!   I just had this conversation with other moms this morning at the autism karate class.   I know my husband struggles dealing with our son’s behaviors.  He’s too quick to respond to the negative behaviors.  It really bothers me and often I find family outings become too stressful.   Today I just wasn’t into going to the zoo with them so hubby took our son alone.  It’s good for them to have some 1:1 bonding time together too since I’m the primary caregiver during the week.