Warrior Moms

Many in the special needs community have labeled the moms "Warrior Moms".  We've been through battle and we've come out the other side, a bit more bruised than when we went in but still holding our heads high for having done it.

Some Warrior Moms are still deep in the battle and we see you.  We are rooting for you and we hear you.

Some are business women who juggle it all, therapy, special diets, IEPS, work, meetings, supporting the family and the list goes on.

Maybe you are an at home Warrior.  Homeschooling, trying to get that online business off its feet so you have money to get a pedi some day.  We see you too.

Warrior Moms can spot another across Whole Foods, we are the ones buying the gluten free cookies and melatonin.

We are the ones glaring at anyone who dared to stop and stare while your child has a meltdown in Walmart.  Yes, we will throat punch that person if you give the nod.  We've been there.

We aren't all perfect to be sure.  We could use some more patience, some more alone time, some more empathy for the lady who's taking 400 years in line in front of us.  We could be nicer and sometimes we should be quieter but see, life is flying by us and we are so busy trying to fix it all.  We sometimes forget to stop and care for ourselves.

Warrior Mom, today…take 20 minutes just for you.  Go walk outside, alone.  Put your headphones in and blast whatever music makes you happy.

Here are two of my favorites:  Dance!  or Worship

Go curl up in your bed for a bit and read that blog you've been meaning to read.

Call your girlfriend that you haven't talked to in 2 years – she misses you.

Take a bath.  A really hot one with oils and salts and everything else we love!

Reach out to another Warrior Mom, let her know she isn't alone.

https://awakeparents.poofyorganics.com/

 

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The box that autism lives in…

I wrote this a year ago on Facebook but never published it or made it visible.  I just wanted to remember my thoughts from that period.  It showed up today in my memories and I decided to share it here.
Update: I no longer feel sad or angry about Jase’s autism.  I feel much more able to help him, work through the issue and I understand his triggers (for the most part).
I am angry about the lies that were told to me when they said vaccines were safe and would bring no harm to my child.   That infuriates me to no end.  The last 2.5 years have been dedicated to bringing awareness to other parents who’ve been lied to.  My next 20 will be spent doing the same thing.

2 weeks ago today I sat in the doctor’s office at Children’s Hospital. She told me that Jase was amazing, brilliant, in fact, he scored higher than any 2 or 3 yr old they’d ever seen. A typical “advanced” toddler scores an average of 100 on the tests they administered the week before. Jase scored a 145. Unheard of she said. I was proud inside. I knew he was a little genius. He amazes Scott and me every day. She continued to talk and I knew what was coming next, I could see it in her eyes. “Jase also has autism.” I looked away. I felt my heart break a bit. To be perfectly honest, I knew already. I’d told Scott 6 months prior. Mom’s just “know”.
I found myself tuning out to what she was saying and thinking of all the things that “autism” means to other people. What would they think once they heard he has autism? Would that explain his brilliance? Would it explain his meltdowns at church? Would people see him differently now? Feel bad for him? Treat him differently? Would he face bullies? Those thoughts were too much for me to handle and I could feel the tears slide down my face.
The doctor recommended 25 to 30 hours of therapy per week. I thought to myself, who can possibly do that and live a normal life? And why would my baby need 25 hours of therapy? She explained all of the reasoning and to be honest, I don’t know what she said. I am happy I recorded the conversation because I will need to refer to it later. It’s later now but I still have not listened to it.
I called Scott when I left the doctor. He sounded like someone knocked the wind out of him. I guess my Google Ph.D. and mommy diagnosis 6 months earlier didn’t convince him. I will be honest. When I heard the disappointment in his voice, I was angry. Strange isn’t it? I began to argue Jase’s case, prove to his dad that there was nothing wrong with Jase and he was the same baby he was 10 mins ago. Of course, Scott was feeling the exact same sorrow and having the exact same feelings I had an hour before…..but somehow hearing him wonder how things would change made me feel so emotional that the only emotion I could muster was frustration.
I am sitting beside Jase as I write this. He’s solving puzzles on the iPad (games geared toward 5 and 6-year-olds) and telling me about each animal as he solves the geometrical puzzle and watches triangles and squares turn into Hummingbirds. He’s happy, engaged, and brilliant. He stops every now and again to come over and kiss me or to say “I’m so smart?” And I reply “Yes, you are so smart.”
We won’t label Jase as “autistic” or a “genius” – those things aren’t who Jase is. We won’t ever let those things limit him or define him. I will continue earning my Google Ph.D. and talking Scott’s head off about cures, diets, activities, methods and everything in between.
Above all of this, we will pray.
When Jase was dedicated to the Lord in May of last year, we had to pick a scripture that would be displayed on the screen behind us. We chose Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “Plans to prosper you and not to harm you, plans to give you hope and a future.”
I’d say that crushes any box we try to fit him in.
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Autism takes no vacations

For the past 3 years, we have gone to Jellystone Park NH for our summer vacation.  They’ve got a splash pad for my little one and a pool for my older one.  Last year my little guy slipped under the water and refused to take a bath for 6 months.  A boy who previously loved baths was now terrified of the water.  I dreaded returning to that splash pad this year just in case he remembered.  To my surprise, a kid who memorizes complete tv shows didn’t remember the water incident at all!  He was very brave this year.  He went right in and loved it.  He did have to get out every 5 minutes to “dry off” because he doesn’t like the feeling of the water on his clothing, touching his body.

 

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He slept in the bunk beds and had very little problems falling asleep.  He ate fast food (which he isn’t allowed, ever) and loved it.  He rode in a golf cart for hours with his dad.  He played baseball and was pretty good at it!  He listened when we said, “don’t get near the fire!”  He used his bubble gun to create a bubble party for kids at the neighboring camps.  He went off and walked around the trails saying “hello!” to everyone he met.  I caught most of those beautiful moments on camera.

I put the camera away for the tough times.  We try to move past them quickly but aren’t always very successful.

We often found ourselves saying “Let’s do a stop and sit” – a method of calming himself down and we were met with louder screams and more insistent “NO!”.   Many times in the last 4 days, we had to stop what we were doing so that he could calm down, familiarize himself with the situation and move on.  This, for an autism parent, is normal but for those who don’t have a child with autism, it looks quite different.

On Monday we went to get popsicles.  Easy task, right?  Not quite.  Three children all with different ice creams means changing his ice cream 3 times.   “I want the blue one.”   Hand him the blue one.  “No, the one with the brown stuff on it.”   Hand him the cone with chocolate.  “No! The other blue one that looks like a stick!”   Hand him the blue one.  “Mama, not this one!  No!  I can’t have this one!”   All the while people are waiting to check in behind us.  Finally, we got all the ice creams in hopes he’d pick one once we left the store.  He didn’t want any and skipped off to play.

On Tuesday we met the nicest ladies working at the food stand.  My son was smitten immediately.  They gave him fries and ice cream, they were BFF’s.  We spent a couple of hours talking with them while he ate his food.  He didn’t want to leave them and when it was time to go, he promised he’d come back tomorrow.

Tuesday evening he decided it was time to leave camp so we sat in the car for 2 hours.  Every now and again he would say “Ok, time to go.  I have a boo boo on my knee so we have to go now.”  I would say “Ok son, soon.”   He’d go back to his tablet but be sure to remind me to turn the car on so we could get going.   Around 11 pm the boo boo no longer hurt and we were able to go back into the RV.

On Wednesday, it was like the previous day’s encounter never happened.  He refused to step foot in the food stand, screamed: “we can’t go there!”.    I tried coaxing him with memories of yesterday, how much he loved Imani and the other ladies.  All he could muster was “no, no, no…we can’t!”   So, we didn’t.  We waited.  To the outsider, it looked like a brat having a fit.  To me, it was my son and his uncertainty about the new person standing behind the counter.

Autism is a tricky thing.  My son is extra special because he is what you call “Twice Exceptional”.   That means he has autism but he’s also got a genius IQ.   Tricking him into listening to you isn’t quite so easy when he’s able to understand the trick!  On top of those things, we suspect Sensory Processing Disorder.   Loud sounds, like a truck or even a fan, are sometimes too much.   The water features at the pool could easily become overwhelming.  If those things happen we leave.  We move past it and go.  This can be stressful for the entire family who may not want to leave but it’s life with autism, it never takes a vacation.

Autism Parenting Magazine article on vacations:  Vacations

Do you have a child on the spectrum?  Are you able to take vacations?  If so, what are some of the tricks you use to keep the peace?  Where are your favorite places to go?

Leave us a comment and let’s share some ideas.