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.

it's time to call a truce in the Autism "civil wars"

Traditional "mommy wars" like breastfeeding or formula feeding, baby wearing or strollers and carriers, bed sharing or cribs and CIO, getting an epidural and hospital births vs home births,  and so on don't quite hold a light to that of the Autism "mommy" wars...well not necessarily "mommy" wars. It's Moms, Dads, Grandparents, Siblings, individuals themselves with Autism, therapists, doctors, researchers, teachers, advocates everyone. It's the Autism Community Civil Wars!

To those who aren't in the trenches of Autism daily, living this life may have a hard time understanding how controversies can exist over what Autism is and how it should be treated. What causes it, Vaccines, genetics, pollution, gut issues, etc. If Autism needs a cure or if the thought of that is offensive, whether or not organizations like Autism Speaks are the devil, High Functioning Autistic individuals protesting parents and organizations etc
Well believe it or not they do exist, and they create an enormous division where there should be unity.

Autism is a spectrum disorder...it affects individuals mildly to severely. Why is it so hard to comprehend this and more important respect this? My daughter is non verbal, severe to moderately affected. I respect the feelings and thoughts of mildly affected or high functioning individuals and their parents. But don't fight against researchers trying to understand the disorder, it's causes, and possible treatments and cures. If your a totally independent individual with Autism living your life, I admire you. I am happy for you, I respect you and your family. You don't feel you need curing of anything and well, you don't. You are beautiful. That's your decision your thoughts your feelings. But the family with the 8 year old in pull ups, having seizures, unable to speak or communicate, unresponsive to therapy, hitting themselves until blood gushes from their face? Or the 65year old parent of the non verbal 35 year old severely autistic son? The families living on the lower end of the spectrum? Or the families who have lost their children due to wandering tendencies? They all have every right to want answers for their child or want to see their child be freed from the chains and locks Autism places on THEIR child or loved one.

It's sad that a divide like this exists in a community that grows larger and larger every day!!! A community that should be filled with grounded humble people. It's counterproductive to solving the problems that autistic parents, adults and children face daily. The vaccine, research, treatment, autism speaks, and all the other debates just need to be put to rest. Again, it's causing a divide and it's counterproductive!
Instead of spending your time fighting over this what about the real issues that always get left in the dark? Individuals with Autism being denied treatments and therapies that could help them improve enormously, denied services, insurance, SSI, etc Understaffed and undertrained schools, communities with NOTHING, no resources nothing! Kids being forgotten everyday and their parents never being heard! All anyone wants to talk about is positive feel good stories that make Autism look like a blessing to families it's bestowed upon when families of severely affected individuals are left in the dark and overshadowed by puzzle pieces and "Johnny" plays Mozart with out one lesson and is making friends. "Emily" didn't talk till she was 3 now she's overcome her Autism.. Or the articles and time spent covering your fighting!? Now the feel good stories don't get me wrong these stories are amazing and should be told but it's all you ever see and for those who don't live this life get a misconception. What about the 7 year old still silent? What about the mom up at 4am with her non verbal teenage son beating himself that he has to have his hands tied? What about the parents searching for help and solutions for years and never finding them or are just handed medication after medication or told to give up? What about the families fighting schools, local governments, and not getting anything to help their loved ones? Keep wasting time on vaccine debates, Should you or shouldn't you support Autism Speaks debates and ignore other advances in research, and fa while more children and families suffer. 1 in 68 people...1 in 68...each journey is different but each are connected and we should be supporting one another NOT fighting one another. Could you imagine unified Autism community? The possibilities then...endless. Support both sides of the spectrum, not just the one you are. Divided like it is now just hurts those who suffer most from it.

 So I will leave you with the words of the wise and inspiring Dr. Martin Luther King Jr. "Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that."

How amazing is this. I have been struggling with my faith a bit as I watch my daughter's behavior change over night and become increasingly worse the past two months. We made our sign for the window like we do every April it reads "We are Lighting it up Blue for Autism which affects 1 in 68. One is our daughter, Madasun!"

Well the light caught the glitter at the perfect angle this morning. Right after I heard the blood- curdling screams  of Madasun and trying to bring her out of her meltdown, and getting a few toys thrown at my head, when it was all over and I hugged my poor, exhausted baby girl I looked up and seen a rainbow like spectrum shining across my ceiling. I just thought that was amazing and perfect timing it comforted me.

I am a dreamer, a believer and little things like this mean a lot to me. Madasun is a lot like me in that aspect. I watch her take in a sunset and see it as a sort of magic, appreciating the natural wonder that we are blessed to witness every day. So when I'm trying to keep my daughter from hurting her self during a meltdown and she looses control of herself and look terrified, and we both lay there exhausted from the battle we just went through. And look up to see beautiful colors dancing on the ceiling from a sign made in support of her and those like her is just a beautiful thing to me and because it reminds me I'm not alone in this journey. Not just because I have faith or family, friends etc but because the autism community is a large one and we are all connected in ways and the feeling you get from talking to someone who just "gets it" is overwhelming. We as a community need to remember this, and instead of arguing over if we need treatments or a "cure" or don't or if support organizations such as Autism Speaks or not, we need to remember what we stress to orhers when spreading awareness. Autism is a spectrum disorder it affects individuals differently, so your journey through Autism and your feelings towards it are yours, but another family is experiencing a whole different side. Respect that. Respect each others journey and support one another. That is all. Happy Sunday everyone, may you get plenty of relaxation and quality time with those who mean most to you

     <3Autism Mommy

Let it out- it's OK to cry, get angry and envy all those typical parents.

Many times I have parents vent to me about having moments of anger, frustration, sadness, jealousy and so on about their child, or in some cases children having Autism. I always tell them this....

"It's OK! Let it out! What you're feeling is completely normal given the circumstances of this hand we have been dealt. Having a child with Autism is rough, and those that live it know. It's OK to be angry at times, it's OK to be sad or get in a funk, its OK to cry. It's OK to feel a little bit of jealousy when you see parents of neuro-typical children. But it's important to not dwell there, and letting yourself feel these emotions as they come and letting them out is a healthy release. "

I never realized that I wasn't taking my own advice. My family and friends and those that know me through my FB page "Autism Mommies" or from my support group in my community know that I have always been optimistic about Madasun having Autism and that I always focus on the beauty and joy she brings to our lives. I was immediately accepting of her having Autism and focused on the "how's" not the "why's". I threw myself into research, awareness, and keeping busy that I never really stopped and gave myself a chance to be upset. about my daughter having Autism

I was told by numerous doctors had told me " You need to grieve the loss of the child you thought you had, the hopes, the dreams you had for her, because they are gone "  and...

"If she isn't talking yet, or by 4-5 years of age she never will. She will never be in a normal class, write, count, learn..."

1. Those "doctors" were all fired and we never looked back.
2. What the fuck? Mourn and grieve the loss of the child I "thought" I had!? And the hopes and dreams I had for her!!?? NO! Sorry but NO!!! She is the same child she always has been.
Her Autism isn't what makes her HER, SHE does that. Autism is something she has. And my hopes and dreams for her well my main ones are for her to find joy and happiness in life and that at the end of the day those are the three that are most important, her having Autism does not change that. The others such as picturing tea parties, and "mommy can we paint our nails" , family trips, school plays, dance classes, softball, soccer, Saturday swim meets, Friday night movie theater night like I had growing up, first dates, homecoming, prom, graduating high school, going off to college, finding something she loves and being successful, traveling, falling in love, becoming a mother if she wanted,  and so on. Typical stuff I think most parents Invision when their child is born.

I have accepted the fact that a very different road will be traveled to any of those things. That many challenges lie ahead and battles are fought day to day. But not impossible. I have hope that Madasun will one day overcome her Autism, I am also realistic and know that there is the possibility that she may never but I don't entertain the "Nevers" or "cants" of the world. I will fight for her and fight to free her and her voice until my last dying breath.

But I never allowed myself to be devastated by the words "your child has Autism." Because I kept my self from that. I'm a writer, and thinker. Not so much a talker. This is my therapy. I felt ashamed for being heartbroken. I needed to take the advice I had given so many times to the parents that come to me. Because Autism is rough, especially when you are where we are, non verbal, low end of the spectrum. I in no way think my daughter is less, or is low functioning I think she has a brilliant mind and an even more amazing heart and soul but her Autism locks her up and it causes her pain, I see it in her eyes when she's watching others and wanting to do something and trying but not being able to control her body, I see the frustration and the sadness that causes her and I would take that away if I could. I would sell my soul to the devil if it meant I could free her from those struggles and that pain. I am no longer going to feel ashamed for saying that because I love my daughter NOT her Autism. Her Autism causes her pain that I see every day and how could I as a mother love something that does that to my child. Autism is not what makes her the sweet, genuine, kind, funny girl who loves camping, swimming and star gazing. Autism isn't what makes her a loving, compassionate girl who doesn't judge others or bully any one, that is HER and I know in my heart she would still be like that if she didn't have Autism.

Right now Madasun is 6, she has been non verbal all her life. When her 4th and 5th birthdays came and went the echoes of those doctors haunted me at night...a few days after her 5th birthday she said her first clear, true word. 4 months after that 5th birthday she wrote her name for the first time. Tears of joy streamed down my face at I looked at that piece of paper. It fueled me. My hope take was running on fumes and she was like here mom let me fill her up for ya! 

She has shown me time and time again "hey mom I'm in here" she knows a lot about astronomy and shows me by pointing to pictures in her astronomy books as I asked questions, heck she dialed in a telescope for the first time at 2 years old. She is a serious thinker, she's very meticulous with things too. She is silly, she laughs...a lot. She loves the water, we are in Arizona we live in the land of 120 degree summers right along a river and during those hot days I see her at her most joyous self. No meltdowns, no stimms, she's a normal kid(extraordinary kid) just splashing, running and giggling with her little sister and their friends. Pulling mom out and making me do piggy back rides through the water, spinning and tossing her as she laughs and laughs...in moments like these all those doctors, ignorant by standers, meltdowns, sensory issues, therapy, pain of her not speaking all of that is GONE. In those moments I'm in her world and she is in mine and that is what its all about.

An idea of what its like to have a child with Autism. Why I might not make it to every birthday party, night out, movie, dinner...why I might have to cancel last minute, why I may be late, why you see an abundance of Autism related posts on my FB...in April a lot of my posts on my personal FB pertain to Autism, I'm always posting something but during Awareness month I "open the flood gates" so to speak. So here is why...there are way too many people out there who misunderstand Autism. My first born, my daughter, my Madasun is non verbal and is moderately-severely Autistic. My daughter does a lot of amazing things but the hell we endure needs to have a some light shed on it. Positive, feel good Autism stories are amazing and I love them and I myself spread optimism to the families I encounter daily on this journey but we leave the darker more serious side of Autism left out far too often which can cause people who don't live this life to misunderstand... "What's a big deal that kid is just quirky" We need to show a little more of the non verbal, self injurious, non potty trained 8yr olds, 16yrs olds, 20 yr olds etc Because Autism does severely affect many. It is a spectrum disorder so it affects it individuals differently. Madasun is 6yrs old. She is non verbal, still in pull ups, she goes through phases of insane sleep patterns(weeks sometimes months of only getting 2-3hrs of sleep a night) she has severe sensory issues when it comes to food, certain clothing and noises. She can have intense meltdowns out of no where and can harm herself. Routine changes are hard for her to understand, routine and consistency help ASD individuals. She is progressing(slowly but any progress is a HUGE deal to us) progress fills us with hope. She is very smart it is just hard for others to see unless they take the time to watch her. She is kind, genuine, funny, she does not judge others she is accepting of all, she does not care about your past, your mistakes, she does not bully or make fun of anyone. She respects every living creature and appreciates things in life that most of us are too busy or just unable to notice. She is an amazing little girl but she goes through things I pray no one has to endure, but millions do. I see her become frustrated from not being able to communicate. I watch her as she sees kids do things and the look of curiosity and a sort of sadness overcome her. I encourage her do anything, and make her try things but because her brain works the way it does, and because where she is right now she gets frustrated because she wants to do them but the kids might not know how to play or talk to her, the coach doesn't know how to explain it to her, the movie theater is too dark and too loud...she wants to be there but her autism makes her react to things in a way she cant control and that is frustrating to her. She is for the most part a very happy child, she enjoys a lot but I see her, I see her have sadness in her eyes because she is trapped in her head so to speak. Imagine being in a foreign place and no one speaks your language...I imagine it is similar. My heart breaks when I think how hard it must be to not be able to say what's on your mind, or if something happens that excites you or made you happy, or sad, hurt etc.

I post so much on my personal page not only my Autism pages because most of my friends don't have a child with Autism, a lot of the people on my friends list have misconceptions, don't know much about it etc those are the people who we need to focus on spreading awareness to. Autism is not a discipline issue, a fad, or a simple personality trait. It is a very serious bio- neurological developmental disability. It ranges from mild to severe so when you know one person with Autism, you know one person...each is different. So please try to be understanding, don't judge, don't stare, don't make false ignorant comments. Learn about it, ask questions, get involved in a special needs event in the community try to put yourself in the shoes of someone with Autism. Try to put yourself in their parents shoes. Imagine your child is 6, 7 or 8+ and still has never said "I love you". Imagine seeing everyone rush off to the things you dreamed of when your child was born, dance, sports, slumber parties, bike rides with friends etc and them never coming. Imagine watching all the children you have watched grow up with your child at their Christmas program at school and your child not be up there, imagine having to fight tooth and nail to get your community or school to involve your child. Imagine your child not having any friends. My family is fortunate for a little girl in particular named Kaydence. She is the daughter of my best friend and she has been an unfailing friend to Madasun. She gets on her level and plays with her, doesn't push her, or make her feel less. She " speaks her language" because she has always opened her heart and understood and with out questions accepted. In our many conversations she has explained about accepting people who are different and how no one should judge them or not be their friend just BC they are different from you. I hope that every child on the spectrum mild or severe can have at least one friend like that. Teach your children about differences, different is not better or worse its just different. Teach them to accept others and respect them as human beings. Any child especially a child with special needs should never be treated less then that of their peers. No one asks for Autism, or ADD/ADHD, Epilepsy, Cerebral Palsy, Downs, Deafness, Blindness, behavioral disorders, mental disorders or developmental disabilities. They are bestowed upon them with out any say in the matter and they face challenges and fight battles daily.

Remember to appreciate your kids, listen to them, those conversations they try to have every second with you that may annoy you, are a treasure. Treasure the family nights at the movie theater, the family dinners, the Christmas programs, dance recital, soccer games, baseball games and so on because there are so many mothers and fathers like you who are fighting to help their children to do the things that come so naturally to those of us who our " nuero-typical ".

So this Autism Awareness Month  learn about Autism, get involved, lend a smile instead of a stare or judgmental comment to the mom you see at the store whose child is stimming or is having a meltdown from a sensory overload. Attend an event, help a sports team incorporate a special needs child, ask questions and spread awareness. Autism is the fastest growing developmental disability, it affects 1 in 68 children in the US. There is no known cause, or cure. Researchers are making advances but the CDC and other health organizations and our government need to step up and take action and help individuals and their families who struggle everyday and for the children who fall through the cracks and are unable to obtain resources and the children who live is small communities like mine. You don't have to have a child with Autism or special needs to get involved, get involved because these are real children, that so very easily could  have been yours. <3

Intro...hello my name is Mallorie and I have a child with Autism...welcome

I am a 26 year old mother of two. My fiance, Thomas met in 2006, instant connection, love at first sight and all that jazz. We were living together after bareley a week of dating, we have been inseparable every since. We had our first child together Nov.20 2007, our daughter, Madasun Lee. A few years later we were blessed again with another beautiful daughter, Morgun Marie on Oct. 07, 2010.  Madasun was diagnosed with Autism on December 23rd 2009. She is classified as having "classic Autism". She is non verbal but making progress in communicating. Having a child with Autism has grounded me. It has taught me more understanding,acceptance, patience and compassion. It has taught me to be more resourceful and determined. It has taught me inspiration, appreciation and strength. A type of  strength I never knew i was capable of having. It has taught me the beauty of being different. Having a child with Autism means your life isn't an easy or "normal" one, but that doesn't mean it is not a good one. It is a different and challenging one.

Yes, I wish my child would talk. I wish I could hear "i love you mommy" or hear what my child is thinking or what they did at school. I wish that certain things didn't cause her to have painful sensory overload and suffer meltdowns. I wish we could go to a restaurant, a dance recital, soccer practice or swim meet instead of therapy, doctors visits etc. I wish my child could sleep normally instead of waking at up anywhere from 2-3am. I wish my child would eat more than 10 things. But I am thankful it was Autism and not leukemia. I am thankful I can hug my child. I am thankful my child smiles, can walk and run, that my child can see, and is healthy. I am thankful my child laughs, cuddles, sings and learns. I am thankful my child is making progress, no matter how big or small, no matter how fast or slow. I will celebrate every milestone she reaches no matter how slow, and no matter what I will never lose hope or the faith that I have in her. Thank you Madasun for all the magic you teach me to see in the world that others are often too busy to notice. You inspire and amaze me every day and I would not change our crazy, hectic, beautiful life for anything this world has to offer. I am proud that the lord chose me to be your mother and as God as my witness I will fight to free your voice and help you over come that bitch they call Autism.

Yep I called Autism a bitch, because if your honest with yourself it is. I am an optimistic person and I don't dwell on the darkness but my child is non verbal and has severe classic Autism and there will be times i hate Autism because of the struggles my daughter faces because of it. Autism is not what makes her special or makes her who she is. She is Madasun, and Autism is something she has it is not WHO SHE IS. This blog is our story, we have a crazy, beautiful journey and if our journey helps just one person then that's good enough for me. Ultimately this is my place to let it go and let it out.