Wednesday, February 28, 2018

Just A Little Reminder, I'm Still Here

The last few weeks have gone smoothly, think "typical" four year old smoothly. Heck, we even made it to mass, as a family, twice and only once did she bound up the aisle during communion to stand under the tabernacle giggling like a little cherub. You see, in our world, there are days that I almost forget autism is here. Its those days when my daughter wakes up, communicates, plays and even goes out and about just like your average four year old. Sure, she's got some scripting going on and she giggles inappropriately but ultimately when I try to focus on the good, the days are getting better and that gives me hope for the future

Then there are days like today, and if I were this disability they call autism, I might pen a letter like this:

Dear Mom,

I see you, you think things are going pretty well, seamlessly in fact, you may have even forgotten that I am a part of your everyday life but you see, I am still here. I will always be here, no matter what protocol you try or what oils you diffuse, I am a part of your life.

I don't plan to ruin your life, but I am sent to teach and I see you are already learning but some days its good for me to keep you in check, mom. You seem to be feeling like you get this and reality is, no one gets it completely, not even me, and I am the disability.

Today, you see, I am not going to allow your little one to go about the day as if she were disability free, instead I am going to jump in and out of the day trying to steal your sunshine. I know, you will try to find the good, and I am certain you are because each day I am around, I see you getting stronger. First, I will show up early, before the sun, and you will hear your little one playing the drum. You remember that drum, the one you insisted your mother in law bring because your sweet girl likes music? Do you like it? At 5 a.m.? Here I am mom, autism. In your life. Always.

Okay, so you tell me that many kids wake early some days and choose to play the drum. I don't plan to stop there. I also plan to get your girl  to ask for two breakfasts, one drink, refuse a second and then have a complete melt down about riding on the bus and going to school. I know, you will try to look for help and because you have built your village, some teacher will come to your aide. You seem to think you have outsmarted me, but I am here. Always.

This afternoon, I will mess with you again as you walk in and see your oldest trying to help your youngest through a melt down. She'll be red faced, scratched and bleeding and instead of being angry, like most teenagers would, she'll look at you and say she understands. You know mom, you are making my job, my job to teach harder because you seem to get the drill, you get the lessons and you move on.

Finally, you see, your schedule will be off. I know you mom, you are Type A. You like everything perfect and you will crack. The ABA Session will be later than normal and Serrie will be tired. She'll have a few meltdowns and pull your hair, she will even hit but I am starting to see, that you are starting to get the lessons and you are learning to take them in stride. I may have to up my game...or I may just have to realize that you understand that this journey isn't easy and you will have to learn to let the little things go and take life in stride.

Hey mom, because of meltdowns and schedules, you won't be able to make it to your kiddos games tonight. I know you will feel guilty. I know you will wish you were there but you are going to have to lean on friends. I know how that makes you feel. Small. Alone. Weak. You see, I impact more than just your child mom, I impact you.

Its funny Mom, to see you today, from where you were before. Remember those days? When you cried? Sobbed in fact. Remember those days when therapy was long and hard and when the therapist left you were sweaty, drained and bleeding? I do. I tried my best to break you but it seems that perhaps you are unbreakable.

You see mom, I keep upping the anti and not just with you mom, but with all moms who face life with a child with a disability and even though its hard, you still come out on top. I guess that is why Mother's were created, to never give up.

Hey mom, I am still here. I won't go anywhere. I am a part of your life but you know what mom? Congratulations for making it through a reminder day and taking it in stride. Don't sweat the small stuff, you are doing great.

Sincerely,

Autism

Monday, February 26, 2018

Hey Autism, You Made Me Stronger

Some moments are pivotal, they allow you to reflect, reconsider and rewind, they allow you to choose another direction and if we quiet our mind and listen to who we are, often we find the person at the end of the trail is someone we like better.

I always try to find the gifts of autism and I am finding the more I reflect on them, the more the gifts are actually easy to spot. Currently I am finding that the once wishy washy woman that I was is now strong and steadfast in her beliefs, even when her beliefs may not be the ones that are popular.

It started with having to choose if I wanted to be transparent with my daughters team or if I wanted to keep much of our lives hidden, challenging them to guess what was going on with my daughter at any given time. Its not always the way people choose to go with Autism. In fact, I have heard people tell me to guard my cards, honestly, I have no cards. I have a diagnosis. I have information and I have opportunity to use that to benefit her and build a team atmosphere or choose to withhold some things. I don't pretend to think my way is best, I think my way is best for me. Not for anyone else, however I will say as we move forward I am finding so much growth in my child because we are all on the same page, we all know what is going on, we all have the same cards that we are holding together pushing our little love to grow and find success in each day.

Second, its the choice to rewrite a resume, the choice to finally acknowledge what others have said to me and choose to try and help other children like my daughter. At first, I hesitated, did I want to fail? Did I want to potentially struggle? No. I do know however if I don't try I won't know what will come out of the fruits of my labor and looking at where Seraphina has come from, as both a parent and autism advocate, perhaps I could help other children like my sweet Serrie.

So Autism, you may have broken me down at first. You may have caused me to struggle but you didn't overcome me. I am using you to overcome you one day at a time.


Sunday, February 25, 2018

Hey, Baby, Thanks for the Smile

Last week this girl was on her first field trip. I dreamed of this day, much like I did with my other kids. That was until we got the reminder about socks. I sucked in my breath and assumed this was a "no go" for her, you see, Little Love hates socks and shoes and when you arrive at a place, girlfriend often strips off her pants.

Luckily we had just had a meeting and I pledged to always be transparent and honest-not that I usually don't but it was a good reminder that the more I communicate with the program she's in, the more they build a relationship with me and the more we have the strength together to create an enriching environment that develops her to her highest potential.

So I emailed. I hoped for a pass, a chance to NOT follow the directions...but the facility stood by their rules and insisted all kids wear socks (I respect this) and truth be told I want to teach my kiddos even those with special needs to learn to play by the rules.

Then I wondered if I even bother taking her. So I suggested that I drive in another car and take her if she melts down. Little did I realize that was against the district policy (I respect that too). That being said I wanted her to try in the worst way to experience field trips much like my other kids had in their own preschool years.

I called the Principal, surely she'd have advice, and she did. I promised to bring feet pajamas, socks, put her in tights under leggings and work to slow the process of strip down naked preschooler but I couldn't promise we wouldn't have a massive melt down. I promised to stand by the school, let them make the call and try to get her to follow the rules like everyone else but IF all else failed, if her amazing teachers couldn't get her calm, could I please take her so that she wouldn't ruin the field trip for everyone else?

You see, these are the moments I never realized I would celebrate and though I sometimes feel so overwhelmed and so sad that its not the "normal" I anticipated when these moments happen, I celebrate.

We arrived. I drove and followed the detour and that poor bus had to wind up and down curves to go around a fire and when they came off the bus, I was there, and she smiled. It was time, to see where this journey would go at the Sensory Play Place and the kids began taking jackets and shoes off. She looked around, and took hers off as well and then it happened. She tried to take her own socks off. We held our breath. Her teacher worked diligently to keep her socks on, and she did. I breathed a sigh of relief and what happened next was pure magic, so much so I am still smiling today.

I watched as my sweet girl transformed into a veterinarian, camper, hair stylist, firefighter, banker, builder, waitress and bounded around the room running up and down slides, in and out of play places and beaming all while she went about it.

You see, this field trip felt different...instead of living that day and moving on, I am living that day and looking at where we have been and how far we have come. That one day of planning and prep made me more aware. I am more aware of others and the way they had to live, long before I understood what living with a kiddo with special needs was like and to be honest as hard as it is, as many tears as I cry, living this life is far better than the life I had before because I am so much more thankful, so much more aware and so much more understanding.

Thank you baby for the smile, you don't just change my world, you change the world you live in and how blessed I am you call me "mom".

Saturday, February 24, 2018

What Is Wrong With Rec?

Today I did something. I admitted something and got myself and my daughters team in trouble. I didn't know it was wrong at the time I admitted it and sat in silence reeling at the fact that I caused my daughters team to forfeit a game that they won.

I sat and I wondered. What is wrong with Rec Sports? I realized the above statement says it all.

I remember my youth when my parents signed me up for recreational sports. My dad even coached a couple years donning those plastic baseball hats standing out at first or third base in the hot sun. After the games, there were bottles of Kool-Aid (the Kool Bursts as my dad had the patent on them) and often walks into town with the team for ice cream. This is where childhood was. It was in the late summer evenings, running barefoot while we had Popsicle dripping down our sticky hands and we chased fireflies while we rounded bases, barefoot bringing bats and gloves to evening cook outs.

Sure, there were standings and leagues and there were even trophies (that Family Jewels Team I played on rocked). The trophies weren't for every kid, as you see, ever kid doesn't need a trophy to have self worth they need an opportunity to play, an opportunity to learn and an opportunity to grow.


I am now almost two years into Rec Sports as an adult, parent and coach and honestly, there is more drama in this gig than I saw on a competitive gymnastics team with money being paid out the wazoo. At first, I was super excited, seasons of sports, less practices and fun but honestly, I wonder, is that really where Recreational Sports have gone? Is it true for every town?

Today Rec, at least in this town is more than a couple practices a week, an opportunity for kids to try sports and learn how to be on a team. Its standings, and rules and regulations, its children who can play as much time as the next child just because they signed up and to be honest, its some children who have no interest in playing and its become somewhat of a babysitting job. Its drafts and off season training, private lessons and coaching and it seems more like a competition than a recreational event to develop minds and bodies and create and environment of unity.

Heck, I don't plan to make friends on this post just to come clean on what recreational sports looks like to me, today. I remember my years of playing as an athlete. I remember commitment, the rule that you showed up and practiced and you played. Period. I remember being told where and when to play and how long to practice. I did it. Truth be told that format, that direction, that strict regiment gave me the opportunity to learn and grow, not just as an athlete but later as a student and eventually an employee. I learned to take direction (even when I didn't want to follow it). I learned that sometimes I can't play the position I want and pouting and sulking won't change anything. I remember losing and heading out to the backyard to throw more pitches so I would get better, stronger, more accurate. I remember listening to coaches and I certainly don't remember half the rules that had to be set, played or applied. If a team was short, you grabbed another kid, threw a shirt on them and called it good.

Today, my mind spins. Maybe its because I have coached 3 sports two years in a row. Maybe I am washed up and need a break but you see, I want my team, my kids, my parents to know I will be that Coach that I had. I will try to give their kids experiences. I will try to set examples. I will support them when they need it and I will be their biggest cheerleader when they accomplish new things.

 Last night a coach from another town pointed out an issue with my daughters team, from a game on a day when she finally had the chance to play fairly well. She shot. She scored. Yes, she dribbled with her head down and didn't have enough power to get shots from where she needed but she still put up 5 points. As I lay in bed with strep and the stomach flu she bounded into the room proud of her accomplishment and today, my confirmation of what that coach said took that away. To be honest, I feel like shit. I feel like I should have lied. I feel like I let my child and her team down and I feel like Rec is no longer the Rec of the childhood I loved.

Is it worth it? To all the parents out there playing Recreational Sports, is this what we want for our kids? Now don't get me wrong I am probably one of the most competitive coaches out there but I will always remind my kids, you are a part of a team, you are a needed part of a team, there is a place for every player on a team and you are a gift on this team...sometimes that gift is hard to unwrap, sometimes, that gifts takes time, it takes patience it take diligence but sometimes those gifts you wait the longest to see become the most special to you.

Perhaps I am lost in the 90's, perhaps. Perhaps, this is not today's reality but now I sit finished coaching basketball for the season (due to circumstances beyond my control) and wishing I wasn't coaching the next season at all because honestly, Rec isn't what it was when I was a kid and to be honest, right now it seems all wrong.

Tuesday, February 20, 2018

Slow Down, A Gift From Autism




When my kids were growing up (ha, like I am not in the midst of it now), I used to hurry them along. I was elated when my first took her first steps at 7 months, 3 weeks (and biffed it into a coffee table). It obviously meant she was advanced. Like so many parents I went about logging those first in baby books filling up pages of special moments that I witnessed and enjoying every moment but truly never stopping to realize the gravity of each one.

Then it happened.

Seraphina.

The milestones came, typically at first. Then one day, they stopped. Responding to her name? It didn't happen. Coming when called? Nope. Not at all. Outside of gross motor skills my little love dove into a world far beyond anything I could comprehend. At first I thought she was just resourceful, able to get things and do things for herself. I remembered stories of my cousin, incredibly intelligent, who was making breakfast and coffee by age three, on her own. Perhaps that was exactly what my own little love was doing. Flourishing. Advancing. Flying past milestones so quickly, I never had the chance to record them in her baby book, and so today, it sits empty.

By 2, she was so different, I knew. Once her official diagnosis was documented, I actually wanted to destroy all her baby books, those milestones, I stayed up late at night recording were gone. Vanished. Into thin air as if they had never happened at all.

With a team of capable, amazing people, slowly those milestones are returning. This time however those quick acknowledgments and hastily documented events meant so much more.

As recently as a month ago, my child didn't know when she was hungry or what the word meant. She knew there was breakfast, lunch, dinner and snacks but couldn't tell you she felt hungry. Thirsty? Same exact thing. She didn't understand her bodily function and potty training was more challenging that wrestling a bear who is on the hunt for food before a long winter hibernation. Recently though, I left it to her, on her time and to control her body and slowly, she's coming around.

I used to glaze over the firsts and truly not recognize the gift and never really worried if I missed my children's last. I always loved the Karen Kingsbury Children's Book, "Let Me Hold You Longer" and though I read and reread those words to my children, they didn't mean as much as they do today.

You see, something as simple as sitting through mass, as a family, brings a smile to my face. The fact my child can tell me she's hungry brings me joy. Sitting at a restaurant with a manager telling me how well behaved my kids are reminds me to take notice that we have come so very far. When my daughter can tell me she's had enough or needs to go, I am elated. Watching my children walk hand and hand without a stroller down a main street town, I suck in my breath hoping for more moments just like the one I am witnessing and finally, when I get an email from school that my daughter used the bathroom, I cry.

You see, autism has rocked my world. Perhaps the last 2 year have been my purgatory, I always told my friend that I believed that Earth was in fact purgatory, and perhaps my intense time for this phase of my journey has been served because you see, though its been hard to stomach, to understand and to hope, it seems that autism has given me a gift. I am able to live more deeply in the moment, see more fully the gift of the adventure and hope more fully for a brighter tomorrow.

Autism, you have had the upper hand. You have kicked me when I was down, I am sure you will do it again, but you see, you have given me a gift, the opportunity to reflect on the little things that mean so very much to me.


So for those of you walking by my side, join me in celebrating the little things for when those big things get us down, we will have these gifts to reflect on and for my friends living life with their typical kids, you too, don't forget to be present, live wholly and love deeply, small moments mean great things.



Monday, February 19, 2018

My Brave Friend

Two years ago when my daughter had the actual diagnosis of autism, I was just pulling myself from my Post Partum Anxiety diagnosis. It was in place because during her delivery I tried to escape into the abyss with a blood pressure of 80/20. As my husband sat watching, they wheeled my daughter out of the room and I sat in wonder as to what my fate may be.

Fast forward a couple months and the reminder of my almost exit was looming over each and every day. I remember the day clearly, it was Thanksgiving and I was making jokes about the "turkey sandwich" with all its fixings placed on my kitchen table. We stood outside and smiled for the obligatory photo ops but inside I was dying and then it happened as we sat playing Uno, I cradled my new baby and wept. I almost died. I almost wasn't there and at that moment I was able to admit, I was anxious and no man jumping on a couch could claiming post partum was a farce could take that away from me. That Friday I made a call that would change my life and I was diagnosed with Post Partum Anxiety.

Fast forward over a year and it seemed that once fearful woman had found her way out of darkness only to be harnessed in and drawn back to moments of fear watching said child struggle socially, emotionally and even academically. Where had the child's ability to know her name gone? Why didn't she understand simple commands. With her formal diagnosis, once again, I slipped into a mode of sadness. I wouldn't call it depression as I functioned, I did, I overdid and I moved forward but sadness over the loss of the life I had once imagined.

Last week, my brave friend private messaged me. To tell the truth, I have never met her face to face and she might tell you some of my immature (pre five kids) self had nothing in common with her strong facade that was open, understanding and welcoming but again, fast forward, experience life, understand others and here I am. I am parenting five kids, vocal about my child's autism and well aware of my strengths, weaknesses and limitations. She messaged with a book title. With the comment that she felt compelled every time she read the book to reach out.

Present-Over-Perfect

That mourning, that sadness, that fear, its simple to explain. I want to be perfect. I want to appear perfect. I want to live a perfect, quaint life with a picket fence, 2.4 children and a doting husband who arrives home at 5 p.m. with a paper under his arm. Newsflash: this isn't 1956. I have 5 kids, one heavenly baby and a husband who texts "sorry going to be late" long over he was expected home. This friend, who texted, herself doesn't live a perfect life but knew that she too held herself to unattainable standards, perhaps we, as American moms living in our generation all do.

And so, I ordered it. I didn't hesitate. Hard copy? Fine. Not on sale? Fine. I was grasping for straws trying to decide how to make it through the next hill in this difficult journey we call life.

It arrived. Saturday. First, I looked at the cover. Water. I love water. I feel at peace at the beach. Ocean City, New Jersey is my favorite place to be. Water is my place. Maybe this author, Shauna Niequist, maybe she understood. I looked at her photo. She looked enough like me not to critique, judge or question my being so I opened it and began to smell the crisp pages as I read the first lines.

The foreword, by Brene Brown had to mean something, this Christian author was one a friend constantly recommended and within moments I was three chapter deep. I was taking photos of comments in the book, dog earing pages and trying to sit back, breathe in and drink the words on the page. Shauna was my people. She was my person. She was my friends person. She is every woman's person.

Every moment I could slip away, I slipped into the book and as I did, I felt my own sadness over the diagnosis passing. I reminded myself of who I was before simple words stole my interior from my soul and I decided, I was worth it. My kids were worth it and yes, even my husband was worth it.

This week, my brave friend sent me to find a book that I figured would help but in the end, my brave friend changed my life and for that, I am forever thankful.

Now what are you waiting for? Go get it. Present-Over-Perfect.

Saturday, February 17, 2018

Dear Autism, I've Won

Dear Autism,

Its time to let you know that you haven't gotten me down so much so that I can't dig my way back out. You have tried your best to suffocate me and make it so life isn't about thriving but surviving but I am here to let you know, I've won.

You see autism, I knew you were hiding long before that official diagnosis when we walked through the doors of a doctor's office. I knew that you were a part of our life long before words, medical codes or insurance denials flooded my mind and my mailbox.

In fact, you see, I have been preparing for you, my whole life. I sat by as I watched my mother, an incredible educator, welcome children with disabilities into her classroom. There, they learned along side their peers and she loved them. She loved each and every one. She can tell you about all of them today. As I watched, I saw her love for each of them was so great that I knew these kids were special.

Then you see, Autism, I grew. I became a camp counselor and every day I drove to camp on that little bus, a little girl, most likely with autism sat in my lap. No one could console her. I held her as the days activities seemed to be too much. I cradled her in my hands knowing that her parents worked long hours and after I sent her off the bus, there was a nanny at home. I didn't know the nanny or what life looked at but I knew I loved her, her quirks and all.

Then in college Autism, I remember sitting with Colin's high school friends. I told them I knew God intended for me to have a special needs child. I don't know why. I just had a feeling. There was something in me that drew me to kids with disabilities. I was the girl who swam with kids in wheelchairs because my mom taught me to see past the disability. I was the girl who didn't mind if someone was different because I knew in my heart of hearts we are all different.

It seemed however my assessment of having a child with a disability was wrong. Five healthy kids. How could I be so lucky? Then one day, I knew. I knew before the pediatricians, before the Early Interventionists, I knew before my daughter's father and even before my mom, the one whom I looked up to in all parenting and teaching life.

You see Autism, I may not seem like it on the outside. I cry easily. I get flustered. I hate when people yell at me but I am pretty damn strong. The day my daughter was diagnosed, I wept, not for me but for her and the journey she had ahead of her but I also knew I would stand by her side. That first day, after I "ugly cried" the whole way home, I chose to have the pick up attitude and dug in. I was reminded of the marathon, not mile run but still went for it. I went for it with my whole being attending my first autism parents support group the day she was diagnosed.

Here I am Autism, its been nearly 2 years. I have shed more tears than I can count. I have screamed. I have cried. I have lay awake wondering what my little love will amount to in life but Autism, you are just a part of her.

You may have robbed me of the life I planned to live with her, the typical trips to the park and the absence of preschool (yes, I kind of suck at school), but you didn't rob me of who she is intended to be. You see, better yet, you reminded me of what I needed to do to be thankful for the baby steps my big kids take. You reminded me to have the courage to tell each of the kids I coach "play your game and you be you" because in the end, you have made me a better, stronger person.

The last few months have been really hard Autism. You see, I have nearly broken but sometimes when we break, the pieces come together even stronger and we are ready to go out fighting.

I don't plan to pretend that you will go away Autism. I don't pretend that you will make my life easy. What I want you to know is I have won because I have decided two years is enough. Autism is a part of me and a part of my life but its a part that makes me better, and in the end I love the person I am today more than the person I was before your diagnosis in my life.

Autism, you picked the wrong girl to mess with. I promise to stand by my child, I promise to advocate for all children and I promise that I will NOT let you continue to rule my life.

Peace Out,
Me

Thursday, February 15, 2018

Don't Give Up

When I was in high school there was a quote I lived by...I can't remember it in its entirety now but it went something like "when things go wrong as they sometimes will, when the road you are trudging seems all uphill, when you want to laugh but have to cry, its then my friend you look to the sky." It continued on to remind you to "not give up".

Though we had a successful meeting with my daughter's team at school, and I left feeling hopeful, that hope was quickly muted by the information we received last night. In an old blog, I shared the story of our fight to get insurance coverage for our daughter through my husbands employer and after hours pouring over documents, citing the American Academy of Pediatrics and breath held, we were denied. On Valentine's Day. Its just another day but something stung.

As my daughter's father shared with me what he responded with to his human resources contact, I sobbed. I sobbed for the feeling that I failed my child. I sobbed for the feeling that I was socked in the stomach realizing that one of the world most successful organizations denied my daughter and many other children with special needs the necessary services to help them flourish with their disability.

As we went on to read, if we stopped her therapies and she lost speech, they would provide it to get her back to where she is. If she had no occupational therapy and lost her capability to do what is expected (though she is currently exceptionally delayed), they would help her get to where she was when she initially lost her abilities but to provide support to reach her full potential they would not consider it.

I am certain, our insurance is not the only one. Prior to our own journey I had no idea what special needs parents faced. Parenting is hard. Heck, adulting and kidding is hard. Living is hard but when your spend your waking hours fighting for everything your disabled child needs you begin to want to give up.

As I sat with my head in my hands, tears streaming down my cheeks, I began to think about this journey and where I was and who I am becoming. I also realized that this journey is creating me to be the person I was intended. The once easily defeated woman who would back down is now willing to stand up and speak up. I am not doing so just for my child but for all who need services that they deserve.

After nearly an entire box of tissues, a live post to my personal Facebook account, I sat in front of my father and my daughters father and realized that this is my calling. I would prefer not to have it be my calling but this is it.

I am called to not be defeated by one person or one industry. I am called to write, study, read and respond. I am called to speak out.

When I first heard the news, I wanted to give up. I literally wanted to curl up in the fetal position and just throw my hands up, but that wouldn't help me, it wouldn't help my child and it certainly wouldn't help parents who did have the strength to speak up and share.

So my dear child, I may have been knocked down. I may still feel like I was run over by a train but I am here to stand strong for you and for those who cannot speak up for themselves. Its time to make change for people with disabilities.

Wednesday, February 14, 2018

Its IEP Day, Three Tips from an Autism Mom

At 6 a.m. my alarm rang, typically I want to hit snooze but of course on IEP day, my mind begins to race and within moments I was showering, doing my hair and donning leather pants. You may be laughing at the leather pants bit but if you are a seasoned pro you are either giggling in agreement or reminiscing about the early years when you tried to look your best for this meeting that could change the course of your child's future...at least until the next meeting.

I used to prepare for battle. I often went in with piles of paperwork, binders full of notes and an energy that could probably slice through silence with my eyes glaring and geared up for war. Late last year, something changed and I wanted to share a few tips I have learned that have helped me to be up, ready and only a little nervous about what is to unfold.

First, know what your child needs. Go through those pages upon pages of reports, check out where your child was a year ago and where they are now and figure out what you need from the school. Is it more communication? What does that look like? Is it more services? Why do you feel your child needs more services to succeed? Do you have any documentation from a physician or other professional that will support these wishes? In today's meeting for my child, I have two goals. First, to get more communication. As I reviewed what I wanted my daughter's father asked what I meant by it, I realized that it wasn't that I wanted more communication, I wanted different communication. Initially when my daughter began school she was non-verbal(ish), I knew that social interactions were minimal and my need was to understand what they did with her and what she chose to do during her free time. Now, as we have moved forward (and forward we have), I wonder what her day looks like from a Preschoolers perspective. Does she have friends? What is remarkable? Did she understand what the others were doing and follow suit? What my daughter's dad said was right. What is remarkable? Often as parents of kiddos with special needs were hear so often the struggles and the challenges. It gets daunting, overwhelming and sad when you never hear what your child can do or where they have found success. My other goal today? To plan for next year. My daughter has a September birthday. Its barely before the cut off, she has autism and a host of other disabilities. I have four other kids, I have seen kindergarten these days and truthfully, I am scared. I want what is best for her for her growth as an individual and I want her to find success in the long run. What does this look like? For me? It has a few options.

Second, be prepared to meet in the middle. Be flexible. This is something I suck at. Really. With five kids I suck at flexibility primarily because I run a tight ship. Why? My ship would sink otherwise. Truth be told, in reality, I believe that MOST educators and administrators truly want what is best for our children. In our district I have seen this happen time and time again. Yes, I am well aware that they are sometimes bound by laws and often bound by financial constraints but as most are often parents themselves, I do believe that both the educators and administrators want to see your child succeed. To do this though, we as parents have to carefully weigh the pros and cons of what our goals look like for our children, their teachers and administration. I mentioned a plan for next year. In a perfect world, my daughter would have an ASD classroom. Its currently not the case, so I have three options that would be "okay" for me. Yes, I prefer one over the other but going into the meeting I plan to listen to their ideas but then not fear voicing my own ideas for what may drive my daughter towards success. First, repeat this year. Currently my daughter has 2.5 hours of ABA instruction in a classroom with kiddos on the spectrum. They work individually on their programs, have modified circle time, group activities and snack. During the afternoon, she goes out for her therapies and also is in an inclusion Pre-K with an aide. She is supported fully and from what I understand (and hope to learn more) finding more social experiences in this classroom with typical peers. That being said, she's doing well academically right now, and so I wonder will they choose to put her in this program again? If not, what would the best program look like for her? I am also open to her doing kindergarten twice, this would mean that she would need an aide, be pulled out for ABA instruction but also be with the peers she is with this year. It would give her a chance to delve into a typical work environment with the comfort of knowing that in the coming year she would be able to repeat the year finding more successes socially, emotionally and academically. Third, they would create an ASD classroom. Okay, high hopes but in this room, she would receive her academic instruction in an ABA setting and then be pushed in for social experiences such as lunch, recess and specials. I know at this point she would need 1:1 support during her push in experiences.

Finally, remember this is a meeting not the end of the world. I think in my early years (lol, she's four), I was so prepared for war that I forgot that like me, these people are just that, human. We will all make mistakes along the way and when we work as a team we will see most successes. We won't always agree. We won't always be able to give the other side what they want but when we work to remain calm, focus on the child and seek to meet half way, I believe we will find success in the long run.

Now all you newbie ASD parents, get gussied up, grab that coffee, put on your leather pants (okay, just get out of the yoga pants) and be a bad ass.

Square Hole In Round Peg

I don't fit. Yup, its me. Not my beautiful child with autism spectrum disorder. Why don't I fit? Its simple. I want everyo...