I Am An Autism Mom But I Am Human

Madasun was always this amazingly sweet child. She brightened up any room she walked into, a smile and laugh that was contagious. She was well behaved, and easy going. She has always had some behaviors that are challenging but she's a child with halted progression/non verbal/ moderate to severe Autism, so that's to be expected. But for her having moderate to severe Autism she was the most well behaved, happy, easy to please child. She engaged, she would engage in learning. Over the past year something changed. She slowly became more and more frustrated, irritable, and in the past 3 months she has become the polar opposite of her former self. She exhibits mannerisms, and behaviors  that she never did before, ever.

Madasun could have someone come up and steal a favorite toy right out of her hand, and she would do nothing, she could go days with out a meltdown, enjoyed shopping, birthday parties, movies etc she NEVER exhibited aggressive behavior towards anyone, never any self injurious behavior etc NOW.... It is as if my sweet Madasun has been possessed by a completely different person. She has frequent outbursts and meltdowns that come out of nowhere and will throw large objects, kick furniture, she almost had the top of a hutch fall on her! She will push, kick, slap, hair pull etc anyone near her during these episodes. I currently have a bruise on my cheek from her sippy cup. Afterwards she is so upset, frightened and genuinely sad. As if she had no control over her meltdowns. It kills me to see her this way. I finally ran out of ideas and called her developmental pediatrician, whom we were scheduled an appt with this week.


We got up at 5am and loaded the girls up around...7am to embark on our 4hr drive....6hrs with them since Morgun, bless her heart, "have to go to the bathroom" in every town we pass, and Madasun often needs to be changed anyway and likes to take a break from the car. Anyway...we hit road construction 100miles from her doc office...once we are in Sun City AZ we are close thank god....nope Navigation is going coocoo...we haven't got this route before to his offices so we had to have the help of good ole "Navi" she was changing her mind every 10secs on where to go. Finally a familiar landmark and all is fine. We arrive in the parking lot 20min late, thank god for them understanding we are from out of town and road trips with an Autistic kid can have sudden " impromptu" moments. As we are fumbling through the mountains of backpacks filled with extra clothing, toys, books, and Madasun's 5 foods she eats (yes she eats about 5-10 things ONLY but we will talk about that some other time) my fiance the saint he is "i will get her inside and get everything going. Get what you need and you and Morgun meet us in there"  still cant find Morgun's flip flops...did they fall out when we stopped at that "Texas chainsaw looking town!?" You know that town...the town with a gas station/garage/general store with about 2 old houses and maybe a trailer or two and NOTHING else...the last place the characters stop at before they die in a horror movie!? Yeah...that town. Here in AZ we have about 50 of those haha....ok getting back on track now. So i find her flip flops toss them to her and she quickly slips them on. Gets her back pack and is ready to go, i grab my 15lb binder, it hold a holy grail of vital info pertaining to miss Madasun. Evaluations, progress reports, things we have tried and their out comes, concerns, test results, daily entry notebooks from teachers and therapists. Etc

Morgun is pulling me "come on mom...sissy in there!" We finally get in the room and I'm able to breathe, ok all this chaos means this is going to be a great appt. Answers, discussion...relief. No. Just no. Now my daughters developmental pediatrician is a very smart man, and i do like him, and appreciate him. However something i have never quite been a fan of is his very assertive, know it all, rigid bedside manner. With that being said more towards the end of each visit he always seems to "melt a layer or two" and listens because at that point he realizes OK that is odd i need to listen to mom and dad because there is no black and white with Madasun, everything is mostly gray.

Since Madasun has always been generally sweet, easy, and pretty well behaved and experiences short phases or spurts of challenging behavior she can mind boggle many of her professionals as far as what to do goes. But this time it is more than that...she has switched and now has short phases of her former self and is constantly in a meltdown it seems. Her aggression, frustration, sleep issues, hyperactivity, dare devil tendencies, stims, and behaviors have all magnified by 100% and are hindering progression, and interfering with her daily life. Risperdol... A little word wrote on the Rx paper i held in my hand brought on a sea of emotion that i had no control over and I begin to break down. My child has run out of options and now we are standing in the lobby of medication. I am not against medication. I just never in a million years imagined it would be something we would need to consider, given the way she's always been. The overwhelming thoughts start to come to the surface and I breakdown....

"What happened? All her doctors, us ,  and family members never thought that this was an avenue that we would ever have to take but here we are. Standing at the starting point. What happened to her? where did she go? Is she still the same little sweet girl or has her autism finally taken over her? Did I miss something? Did something happen to her that she can't tell us about? Did I fail her? Will this medication work? Will she have a reaction? What if something happens to her? What if she has a severe reaction and she dies because of something I put in her body? Am I failing by giving her medication? Is our hope still there? I feel like it's nowhere to be found. Lately I have just had enough. I never had a chance to break down since her diagnosis was first placed upon our shoulders. I don't want to see my baby I want a help her! I'm her mother!"

On our way home we pulled off near the mountains. A scene loved by both Madasun and I. Nature seems to bring us both peace. It's partly cloudy, the rolling grassy hills that but up against the tall rocky, mountains are filled with wild flowers. It's warm with the perfect cool breeze. I take her hand and pick her some flowers, when i hand them to her i see that smile that can warm the coldest heart, instill joy in the saddest people, and i hear the sweetest sound my ears have ever heard..."thank you. My fwowers (aka flowers)" There it is, there is that jolt of hope, as if she and it are saying "it's OK, remember calm sees don't make skilled sailors."

There is a song that has spoken to me the past couple of months.....

"I can hold my breath
I can bite my tongue
I can stay away for days
If that's what you want
Be your number one

I can fake a smile
I can force a laugh
I can dance and play the part
If that's what you ask
Give you all I am

I can do it
I can do it
I can do it

But I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human

I can turn it on
Be a good machine
I can hold the weight of worlds
If that's what you need
Be your everything

I can do it
I can do it
I'll get through it

But I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human

I'm only human
I'm only human
Just a little human

I can take so much
'Til I've had enough

'Cause I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human"

It's important to remember it's ok to breakdown...we do hold the weight of worlds on our shoulders. Researchers say "the stress a mother of a child with Autism experiences is similar to that of a combat soldier." It's also important to remember you aren't alone. Not just because of family, or friends or the millions of families that reside in "Autismland" but your child, your child is right there in the trenches with you and we need to remember what THEY go through and it's OK for THEM to breakdown too.