Why We Celebrated An ASD Diagnosis

No, there were no balloons or cake. There wasn't a special dinner or even a small party.

What there was, was a sigh of relief.

Yes, there were tears but there was hope.

HOPE.

Now as we enter a new year, people are thinking of their resolutions. They are preparing to leave the past behind, to wish away the old and welcome in the new.

I will never forgot 2016 because it was actually a great year. A year of answers.

A year of HOPE.

It started out rough. Or a better word would be catastrophic.

We had emergency room visits, self harming threats, running away, leaves of absence from work, pulling A out of school, bullying, tantrums, and so much more.

HOWEVER......we had a diagnosis. An answer. A plan.

HOPE.

We then focused on IEP plans, therapy, medication, 1:1 aids, learning and advocating. We started to understand the world of A.

So while I look forward to 2017, to new therapies, new treatments and more advocating, I can appreciate 2016.

Sometimes a diagnosis can be negative.........A's diagnosis saved him.

Surviving The Holidays

The cooking. The decorations. Gift giving. Holiday movies and hot cocoa.

I have always loved holidays. The sense of family and togetherness. The beautiful lights and delicious foods. Christmas trees and pumpkin pies. Curling up on the couch and watching Rudolph. The feeling of warmth and family.

Before A's diagnosis, we would pack our bags and visit multiple family members. It had always resulted in a very cranky A and very cranky parents. Some would think he was rude when exclaiming "this is not what I asked for from Santa" or that every single food prepared was not what he liked. And the puking. Oh the puking. Sensory overload!!!! And I always thought he was just being difficult. Little did I (we) know......

Lights.

Music.

Long lines.

For an autistic child (and parent), Christmas isn't always as magical as those lead you to believe. A is beyond excited that his elves, Sal and Spinner, have returned. The thought of new toys has him beaming ear to ear. But there is so much more to deal with during the holiday season.

"Want to tell Santa what you want for Christmas"?

"No mom, I'll send him a note" (not just an autism thing).

Now let's throw in 10 days off from school. There goes his routine.

Holiday pictures? Not for the kid that can't bear to wear anything other then sweatpants and a t-shirt.

Pizza for Christmas? Of course!!! This is the only thing he eats lately (well, add corn dogs, pizza rolls and pizza bagels to the list).

Now we are going to visit family and everyone wants a hug and a kiss. Well A doesn't hug or kiss anyone but mom and dad.

Oh and my favorite.....A is honest about everything and will blurt it out. Give him a gift he doesn't like. He's going to tell you. I can feel my cheeks getting red just thinking about it.

To keep the magic alive, please don't be offended by our holiday pictures with the kids in sweats. If I show up at your house with a frozen pizza, don't be insulted. We won't have a picture to post of us with Santa and A may not give you a hug (a high five you can count on though).

Our magic may not be the same as everyone else's but it's our magic and we love it!

Merry Christmas, Feliz Navidad, Happy Hanukkah and Happy Festivus!

Dear Me Six Months Ago

Dear Me,

As you sit here in the doctor's office waiting to find out A's diagnosis, I want to let you know a few things.

It is going to be a long road. Life as you know it will change. But it will get easier. Each day you will celebrate accomplishments, even on the toughest days. But it will get easier.

When you are at your weakest, you will find this is when your other kids are strong. They will lead A, teach him and love him for who he is. They will understand his struggles. And they will be your strength when you feel like you have given all you can give.

You will meet amazing people in the ASD community. Some will be local, some will be online. All will become your friends. And all are routing for A.

It is okay to say no. When you are invited to holiday events and birthday parties, it is okay to say this just doesn't work for us. This doesn't work for A. Saying no is okay.

He is still the same silly boy that loves wrestling, doing flips and playing soccer. Regardless of what they tell you, he is still A.

You will cry. In the shower, in the car and cry your self to sleep. CRY! It's already a scary world we live in....you will wonder how he will maneuver it when you are gone. But when you are done crying, wipe away the tears and fight. Fight so that you don't have to worry about his future.

More then anything, love him deeply. Tell him every day. There can be cruel people in the world and no doubt he will come across them. So love him with a strength more powerful then words.

Sincerely,

The Future (Stronger) You

10 Things My Autistic Child Has Taught Me

Raising a child on the spectrum can be tough. Some days I seriously don't know how we got through the day.

But each day we do.

Each day is a learning experience, not just for A but for all of us. It is not just his world but our world as well.

If he has taught me anything, it has been to never doubt myself as a parent......oh and these other 10 things below:

1. You will learn you have way more patience then you ever thought you had. 
2. You wear a pair of invisible boxing gloves because you are always prepared for a fight.
3. Throw out all the advice from parenting books because 4 hours of television and 2 hours on the tablet make our Saturdays a lot calmer.
   
4. Your child will not be harmed from eating pizza and chicken nuggets every.single.day.
5. For a kid that hates loud noises, he makes a lot of them himself.
6. Professionals know a lot about autism but no one knows my child like I do.
7. People will stare. Take the opportunity to educate them on ASD.
8. It's okay to worry about their future, just don't let it take over the present. Enjoy every moment.
9. Watching him sleep gives me peace, knowing his brain is getting a little rest.
10. No matter how hard the days get, how long the journey becomes, I would never change who my child is.

Extra Super Moon...Be Very Afraid!!!!

On November 14th, the moon will make it's closest pass to earth since 1948. Did I mention it will also be a full moon? I guess this bad boy has a name.

An EXTRA SUPER MOON!!!

ASD parents prepare.....get your bottle's of wine ready because this is not going to be good.

For those unfamiliar with the ASD world, on autism board across the world, you'll find parents posting about their child's changes during a full moon. They seem to get a little angrier, a little grumpier and a little more emotional.

We have watched A's behavior during the average full moon. He becomes a bit crankier, uneasy to sooth and nights become sleepless. Seriously, who doesn't want to watch Nick @ Nite at 2am. Just when I thought life with A couldn't get any more "wonkier" then it is, it does!

Now I am not calling my child a lunatic however, there is a reason it comes from the word "lunar". Just saying.

So while there are Doomsday preppers filling basements with gallons of water and batteries, call this mama a Full Moon prepper.

Wine? Check!

Stocked Keurig coffee collection? Check!

Proper shoes for walking on eggshells? Check!

Now we wait........

What Do You Know About High Functioning Autism?

Many of those on the spectrum have tics. Whether they spin, flap their arms or chew their (toe)nails, it allows them to "self sooth" when they are overwhelmed, excited, upset or anxious.

A's major tic is nail biting. Fingers and toes, he does not discriminate. He becomes fixated on it to the point that we've had bloody fingers and practically missing toenails. And did I mention, he hates band aids? Many of those in A's life don't see this part of him.

There are so many things that go unseen in the world of A. Because of this, I often hear that "he must be high functioning" or "he looks like he is doing well".

A has his moments when he can "pass". Pass you ask? Yup, pass for being a neurotypical kid. From the moment he wakes, to socializing in school, to getting through homework without help or a complaint. He can pass.

Ask us at 2am when he is wide awake watching TV for hours if he is doing well though.

When he sits in the back seat of my car talking to his big brother and repeats one word, so softly you can barely hear it, over and over and over. That's his Palilalia (click here to learn more about it). I listened to the name Christopher over and over for a good 30 seconds this morning.

When he tells me he doesn't want to live anymore because of his "stupid autism", I am not seeing a high functioning little boy.

No, he may not be in a wheel chair so his disabilities may go unseen to the average person. But they are there, he lives with them day in and day out.

Why must we separate those with Autism into "functioning" categories? When we do this, we are just creating another label in a world where we are judged by these labels. That "high functioning" kid doesn't need as much therapy because he's barely autistic, right? Or maybe you'd assume that the non-verbal child on the spectrum is "low functioning" because they can't communicate? Or can they?

When people can't necessarily see a disability, it's like they need a word to define the degree of the disability.

Bottom line is high and low functioning labels are pointless. Acknowledge that every autistic individual has their own sets of strengths and weaknesses and focus on getting them the support to deal with both

Humanity Stopped Listening

I know I am not alone when I say the 2016 political year has been ugly.

UGLY

No matter what news report you listen to, no matter what online source you follow, it is all hateful. There came a point when the issues were forgotten and it became a he said/she said tantrum of events. I cringe when I log onto social media, a place where I share stories about my children, a place where I go to follow friends I don't get to see often, and all I see are repulsive attitudes. Cyber bullying at it's finest.

So as I normally write about autism and disabilities, how does this relate to my root cause?

I often wonder how I can expect society to accept my child, to be kind, to teach your own children about acceptance, when in fact society can't practice it themselves?

I tend to think I will spend the rest of my life on this earth fighting the fight, fighting his fight. Being that mama bear that has to protect it's young because I have no faith in humanity.

When I have friends still using the word "retarded" to refer to a political figure, I guess they are not my friends after all. When you belittle someone online for their political choice, you are a bully. Plain and simple. And while I hope you are not passing that mentality on to your children, the ones that sit with my son at lunch, chance are they are learning it from you.

Remember when your mom taught you "if you have nothing nice to say, don't say anything at all"?

Humanity stopped listening to their mom.

It's Not Just About The Puzzle Piece

I saw a beautiful scarf recently covered in puzzle pieces. I pointed it out to hubby that I would love this scarf, that it would accent my work outfits. He said buy it.....the money will go towards autism awareness.

I am all for "lighting it up blue", jewelry and clothing with puzzle pieces and donations to societies that fund research.

True autism awareness is not those things I just listed though, at least not to me.

It's explaining to friends why we didn't go to your child's birthday party at the dark, indoor mini-golf course (sensory overload).

It's seeing another parent to a child on the spectrum and giving that look like "you're not alone".

It's taking your child to a restaurant and dealing with the stares when he gets so upset over them not having his favorite food.

It's taking the time during all those instances to educate society on why my child is not like yours.

It's writing a blog so people can see the good times and the bad, so parents can have someone to relate to in a world that can feel so lonely.

So I will continue my donations, my puzzle piece shopping and my blue light bulb because if nothing, it sparks conversation.

But truly making society aware that I'm not a bad parent, that autism doesn't have a look and that I can't spank the "bad" out of him comes from being a proud parent to an amazing ASD child.

The "C" Word

I am not referring to that big bad word I have used on occasion to describe a woman that has stared as A has a meltdown in the store. Not that word.

While A is diagnosed on the spectrum he also has other diagnosis'.

These are called comorbidities.

These can be hard to diagnosis because many comorbid traits overlap with autism.

They can range from ADHD to epilepsy.

A has a handful of comorbid diagnosis' that can make determining issues difficult at times.

• ADHD - Attention Deficit/Hyperactivity Disorder

I feel as though nowadays a lot of people have heard of ADD or ADHD. Basically if your child is hyper and won't sit still, they probably have ADHD. WRONG!!! Many kids (and adults) that are ADHD are not hyper. They may have difficulty paying attention or focusing on one thing for a length of time. A has a combined type. He has difficulty focusing, is fidgety, talks excessively and doesn't know how to play quietly.

• Generalized Anxiety Disorder

A worries.  He worries about not having friends. He worries about if they decide to change the lunch at school from pizza to something he hates. He worries if mom goes away. He worries that he won't be able to get through the school day without getting in trouble. He worries. He worries a lot.

• Sensory Processing Disorder

Do you go to Target and open packages of socks to try on till you find the right brand? Does your kiddo wear noise cancelling headphones in the lunchroom? Maybe they don't hug anyone other then you and dad because the touch is uncomfortable. A loves the color orange...specifically neon because it is visual appealing and gives his senses a good feeling. He needs to jump or crash a lot. It makes him feel good....almost complete.

So while autism is a big part of our life, we acknowledge that there is so much more going on in that beautiful mind of A.

My Annoying Little Bother....I Mean Brother.

"Play with me G".

This is screamed through my house on a daily basis. Some days big brother G is okay with playing with the little bother. Other days, he couldn't be bothered (see what I did there?).

While most of us are understanding and trying to learn and maneuver the world of A, there is one guy that looks at his little brother as the same little brother he has always had. There are no changes.

And A can be annoying. He makes weird noises. He growls, grunts and has throat clearing tics. It drives us crazy but we understand why he does it. G does not.

I've bought numerous books on autism, geared towards kids and siblings. G has read them. he has even pointed out the "A does that too"! But it still doesn't register, because to G, A is still just his little brother.

We walk a fine line between making sure G has his own identity, his own alone time, but also ensuring that he makes quality time for the bother, er brother.

At times I wish G could understand A's autism......but for the most part I am happy G looks past it and just sees his little brother as his little bother. They way siblings should be.

Educate Yourself

I knew something wasn't quite right, something had changed.

A was acting different.

So I started reading. Some days this can be bad. You know those times when you have a headache and your seeing little floaty things so you go to Web MD. You have now diagnosed yourself with glaucoma, a concussion or an eye tumor.

In reality, you're dehydrated and sat up too fast.

This time my reading was good. It pointed to things like SPD, OCD and ADHD. Then I noticed the tics. In the back of my head I knew he was autistic. How could this happen all of a sudden?

I couldn't dwell on the how, I needed to focus on the "what now".

Once A received his formal diagnosis, I started reading as much as I could. Medical books, self help books, thesis' writing by pre-med students, case law and actual disability law. I knew that there would be people that would fight us, try and deny A services. I was just stocking up my arsenal.

As parents, whether your child is physically disabled, on the spectrum or neurotypical, you must educate yourselves in whatever effects their life.

It is our job to fully understand our children. Be a part of their school life. Their education. Their extracurricular activities.

Educate your self. It's the most important thing you can do in your child's life.

How Autism Made Me A Better Mom

When R was younger, I recall her coming in from school and getting her snack before being told to do her homework. And that's just what she did. She needed minimal assistance. Maybe some new math work was confusing her or she had a project that required the help of mom and dad. Otherwise she handled her shit. If she got it wrong, it would be corrected by the teacher and she would learn from her mistakes. Now we have a 17 year old in Advanced Placement and Honors classes because essentially, her homework was her job.

I have always been a working mom so after school programs have been a way of life. There was no parental chit chatting at normal pickup time. No after school play dates. No PTO volunteering or school committee meetings.I was not a part of her school years and she survived.

Fast forward 10 years later.

Since A's diagnosis, life has changed.

Maybe I can even say it has changed for the better in some areas.

Autism has made me a better mom.

I still work. Full-time. My kids still go to an after school program.

But it is autism that has made me want to be a part of their school lives. I need to know what A is doing for 8 hours a day. That means having relationships with the key people in his world. First name basis with teachers. Knowing that his school therapist also juggles the crazy life of work and raising kids, i think of us as kindred souls. I've made mom friends because A needs friends as well. How can I expect him so become comfortable in social skills if mom doesn't even know the other parents.

You can now find me researching the school budget, knowing who my school committee members are and attending PTO sponsored events.

And I like it.

It has given me purpose as a parent. I had a kid that was the proverbial swimmer...throw her in and she swam. I now have a doggie paddler....and without mom being involved, he would be in the deep end way over his head. My involvement is his life vest or shall I say, swim lesson?

A's diagnosis changed all our lives but it made me feel worthy of being called mom.

Finding Friendship

A gets so upset when big brother G hangs out with friends. All A has ever wanted were friendships, to hang out with other kids and just have fun.

Well, he got his wish.

Granted, mommy made it happen because A's social awkwardness tends to get in the way, but it happened none the less.

Thank you to his school buddy for hanging out, playing Lego's and video games and just showing A that friendships are possible.

Happiness comes in friendships

Kindness Does Exist

It's our 3rd day of school and we haven't been kicked out yet. I'm joking. Kinda.

When I met A after school yesterday, his smile said it all.

"How was your day buddy"?

"I love 2nd grade".

Best response ever.

So when we showed up in line this morning, we started our line up ritual. Hubby found that Rock, Paper, Scissors reduces his before school anxiety. We spend a few minutes talking about our daily expectations, after school activities and then jump into rock, paper, scissors before the teacher comes out.

This morning we had a visitor to our line. A little girl showed up with a plastic bag in hand.

Little girl: "Hi A, I brought you a present. Close your eyes".

A: Okay (closes his eyes but peeks though)

Little Girl: "I got you a Chewbacca Furbie! Because you had a Chewbacca backpack last year"!

A: "Wow. This is awesome (and proceeds to make the Chewbacca growling noise).

I know that A was so happy not at the toy but at the thought of having someone like him enough to give him a gift. I was just happy to just have a little girl recognize that A is a pretty cool kid that loves Star Wars.

I challenge you all to make a difference in someones life.

Deliver a meal to an elderly relative. Offer a ride to someone without a car. Volunteer. Be kind.

There is someone out there that can use your kindness. Maybe one day you'll be on the receiving end.

#GoBeKind

MY VILLAGE JUST GREW BY ONE

Today is the 1st day back to school. I should have ended that sentence with an exclamation point however, it is not something I have looked forward to. Sleepless nights, worrying over IEP's, new teachers and new friends (potential) has left this mama with more anxiety then A has going to the Rain Forest Cafe!


A woke up a little earlier then normal but after going to bed by 8:30pm and sleeping the entire night in his bed, I know this morning was off to a good start. We decided to walk to school because even the shortest walks gets out some of his energy before being asked to pay attention for a few hours.

We found his line immediately and A was pleasantly surprised that his classroom line was next to his big brothers.

We chatted with old friends and patiently waited for the teachers to come outside.

I spotted his guidance councilor and made a mental note to grab her ear as soon as possible.

The teachers started filing out the door, heading to their classroom lines. I saw A's teacher approaching as she shook every child's hand and introduced herself to us parents. I had requested this teacher in particular. She has a larger population of foreign children and we have come to learn that they have been the least likely to pick on Angelo for his disabilities.

Once A's teacher passed by us, another woman stopped by to introduce herself. She said she would be in A's class so I assumed she was the SPED teacher.....but no, I was wrong.

She is A's 1:1 aid!

I was elated. A had an aid for the last quarter of the school year last year and his behavior improved immensely. Having someone prompt when it's time to change task is huge for A. Without his aid I'm not sure if he would have made it to 2nd grade.

I wanted to hug his aid. And cry out of happiness. With that one handshake, all of my anxiety disappeared.

They say it takes a village to raise a child. I just added a new family member to that village. That gives me justification to rewrite the first sentence above.

Today is the 1st day back to school!!!!!!!!!!!!!!!

First day of 2nd grade!

Why We Camp

We became campers in 2011 after purchasing our first pop-up camper. Both hubby and I grew up as campers, myself being a tent camper and hubby traveled in an RV. We love the outdoors, campfires and traveling so it made sense. Little did we know A would be diagnosed autistic and this would be our main means of vacationing. We now travel in a 35' travel trailer that sleeps 8+ people. It's A's home away from home. Here are a few reasons why 99% of our vacations are camping:

• Camping allows A to enjoy traveling with us all while having the comforts of home.

• We always stay at a campground with cable. He needs his Cartoon network.

• He has his own bed, with his own blankets and his favorite stuffed animals from home.

• We don't have to eat out. A is pretty predictable when it comes to food. Turkey and cheese with mustard. Ellios Pizza. Pancakes with sausages. That is pretty much it. Throw in an occasional chicken finger, burger and bag of chips.

• He doesn't have to shower daily. We are camping.The minute A takes a shower, he's back outside in the dirt. We figure the daily hop in the campground pool = bath time. Winning!

• Camping has built up his independence. Allowing him to ride his scooter around with his big brother or just morning walks to the park. He is learning how to be a big boy.

• Camping is quiet (even though A is still loud). For a kid with major sensory issues, this is a blessing. No large amusement parks, loud airports or busy restaurants.

• Flip flops!! A hates socks (surprise, surprise) so a week in flip flops or even barefoot saves me the hassle of hearing "Mom!! It doesn't feel right"!!! 

I am sure we will travel one day by plane or maybe cruise ship but at this very moment we have found our source of vacationing that works for our family.

2016 Is My Bitch

Fuck you 2016. You thought you could drag us down. You thought "hey, let's flip their world upside down and laugh from across the room". Yeah. It hasn't been easy. Some days have down right sucked. But you know what? 2016 hasn't won. Actually, I have grabbed 2016 by the balls and made it my bitch! But only after 8 months have I realized it wasn't about me, or even us. An autism diagnosis is about the whole family. In a mere 8 months I have learned who true friends are. I have watched a 16 year old grow up and gain a fierce protectiveness over her brother. I have watched an 8 year old struggle with why he gets treated differently. And I won't lie. He does. We all do. And it's not just autism. It's any disability because honestly, who plans on a disability being a part of their life. From the moment you find out you're pregnant, you expect perfection. You worry about what you eat, how much rest you get, but nothing guarantees perfection because there is no such thing. If I was told 7 years ago that my son would be autistic, would it change anything? Not a damn thing. Not for this family. My child is the coolest kid I know. His siblings are amazing little people that will grow into compassionate adults having grown up around a disability. So while some days I have doubts, I am worn out and feel like I have nothing left to give, I do have a big middle finger for 2016. You haven't won. This was our year. This is when we became stronger then ever and you can never take that away from us.

Letting Go

This weekend we had the luxury of pulling our camper (Sexy Beast) to our friends vacation lake home in New Hampshire. It was absolutely relaxing and serene. And our camper is one place that A feels at home because, well it is his home. Everything he loves and cherishes (and needs so get through the day) goes into the camper. DVDs, 2 iPad's, favorite stuffed animals, the food he can't live without (this week is turkey and cheese sandwiches) and any other item that allows us to vacation in peace.

We spent Friday lounging at the lake, fishing and swimming out to the dock for some cannon ball fun.

The boys kept asking our gracious hosts when we could take the boat out.

What started out as a cloudy Saturday turned into a warm, humid and sunny afternoon. It was boat time!!!

We all piled into the boat, life vests on and ready for some tubing. My kids and myself were tubing virgins, my husband already had that cherry popped.

I was a little uneasy because A doesn't care for anything that goes fast. Amusement rides are hit or miss. And although he has taken a ride on dad's motorcycle, it was a slow circle around a campground we stayed at.

The boys decided they were going on first.....climbing out onto the tube and drifting behind us, my heart started to beat hard. "This would be a 10 second ride before A starts screaming to let him off" I thought to myself.

G knew the hand signals and the minute we pulled off, a thumbs up went up, indicating he wanted to go faster. Thump, thump, thump. I can't get to him if he needs me. Wonder if he falls off? Wonder if he gets so scared we end up in a meltdown? We will be leaving soon, I know it.

A was smiling. He was laughing. We stopped to check on them and in unison, they both screamed "go again".

There was my happy A, doing something new, without his mama by his side.

My heart slowed down a little, my palms eased up from the nervous fist they were in.

I was finally letting go. Letting go of fear and letting go of the helicopter "momtality" I had.......my autistic son CAN do things. I will be here to protect him but I also need to let him live.

He lived this weekend and I let go. We're both making great strides.

WHEN THE MEDS WEAR OFF

My phone has 3 alarms set: 7:00am, 12:00pm and 5:00pm. These are A's med times and I try not to waiver too much. If by chance he sleeps in on a Saturday or Sunday, the times may be pushed forward by an hour but for the most part we stick to the plan. And the plan works.

That is until this momma forgets because we were having too much fun to remember. I'm still new to this autism life and this weekend I did the unthinkable: I forgot to give him his mid-day dose AND we went out!!!! The horror!!!

Actually, for me it wasn't so bad because that was the A I was used to for so long. The hyper, aggressive, spin in circles, repeat after me, never shut up A.

But I was afraid of what the family would think. 

Essentially, only me, husband and the kids have seen really what A is capable of. We have friends and family that have seen some meltdowns, maybe a few tics but not many have witnessed a 6 year old destroy a classroom, flip over desks, pull computers off tables and rips pictures straight off the wall.

So when I realized I had forgotten to give A his meds, I scolded myself for not carrying spare medication in my purse. It all worked out in the end, we got him his medicine and he went back to enjoying his Saturday afternoon.

But it got me thinking......why was I so embarrassed for people to see A's personality? Essentially, why was I embarrassed of my son?

I finally came to the conclusion that it wasn't embarrassment, it was me being a mother that didn't want to "burden" others with what I have dealt with. We do that as moms. We take on the world. Our shoulders are strong but after a while we start to wobble....we can't hold it all up. That moment of A being A, should have been welcoming, allowing others a glimpse into our life.

We struggle but our struggle is understanding how A sees the world. Letting people see A without his medication will allow them to better understand his life, our life and Autism in general.

All I Can Do Is Laugh

I laugh. Everyday I laugh at what our life has become. That may come across as insensitive but reality is, once A got his diagnosis, all of our lives changed. And the only way to get through each day is to laugh.

You see, my definition of autism has changed. When I first started my research I focused on the actual definition. You know, the one that Webster states as: a condition or disorder that begins in childhood and that causes problems in forming relationships and in communicating with other people.

And while Websters is correct, I've realized it is so much more then that. Each child is different. Each diagnosis is different.

So now I laugh because our definition of autism can be crazy at times. It's not whether A has had a "good" day or a "bad" day. He had "his" day.......and we are learning and laughing with him.

Our definition of autism is:

Dressing A in neon colors cause he's a runner (or wanderer)........and it's easier for me to spot him.

Never leaving home without his tablet. Never. Not once. And my phone is a constant hot spot for data.

Noise cancelling headphones if we go to the movies, a restaurant, a party...anywhere that is sensory overload.

Repeating myself over and over and yet, he never hears me.

Whispering to my husband something not meant to be heard, and yet A can hear it from the next room.

Everything is done on A's terms. Family picture? Not if he has anything to say about it.

Overeating cause he brain doesn't know how to shut off the sensation, then rubbing his back while he pukes it all up.

Chewing his toenails because nail clippers are too easy and he needs to self stim.

Haircuts in the tub because the buzzers at the barber shop make too much noise.

Wondering if he is having a meltdown, tantrum or is in sensory overload.....or maybe all 3!

Drawing the shades, curling up under a blanket and talking him down from a meltdown.

Knowing that I ordered pizza from a different place and not eating it.

Sitting in Target trying on socks to make sure they don't feel "funny".

And it is so much more! We are learning as much a A is learning to maneuver this life.

And all I can do is sit back and laugh at the kid dressed in a neon orange shirt at the park, sitting on a bench, chewing his toenails. That's my kid and I am so ever proud of him.......autism doesn't define him, he defines autism.

When Someone Listens

A lot of times when we are screaming for help, we just want someone to listen. I use the word screaming because over the past months I've asked politely, I've requested, I've even spoken a little louder to get attention, yet I felt like no one was listening. Finally I screamed. And it was only after A screamed at us for help.

When you have a child use the words "I hate myself" and "I want to die", you panic. When it's your 6 year old, a small piece of you dies inside because you feel like you've failed him. 

What you really did was teach him to scream when he needs help. It was 2 months ago that he screamed and in turn, we screamed. 

We spent the evening at Boston Children's Hospital being evaluated for A's well being. His official discharge papers said he had a "tantrum". We call these episodes at home. What we have learned is he was probably having a major anxiety attack and couldn't deal with his feelings. In his little 6 year old head, he just wanted to be calm.

After that day, we started screaming. At pediatricians, psychologists, teachers, school officials. Everyone. And they started to listen. 

We got a formal diagnoses of ADHD. Then we started medication. Then we switched medication because the first round didn't work well for the little guy. Major side effect city!!!

He was then diagnosed with Unspecified Anxiety Disorder and we finalized his IEP with the school. 

Then came the big one. In my heart I knew for a few months but no one was pointing it out. No one even mentioned the slightest possibility. Until we met the right doctor. We finally didn't have to scream. He picked up all the small "quirks". I showed him videos of how he acted at home. 

He looked at me yesterday and said "I believe he is on the Autism Spectrum. 

I smiled. I knew in my heart. And I was happy. 

Happy that after all the screaming, we can finally work towards giving A the quality of life he deserves. 

This is still the beginning. The road will be long, winding and bumpy but we will travel it together. 

He may not be your typical child but his differences make him one of the coolest kids I know. 

Sometimes you just have to scream to be heard. Don't stop screaming. 

I Don't Want To Talk About It

This was a hard post because I'm going to put this whole post as bluntly as possible.

I don't want to talk about it. 

Here is what we are dealing with and here is why I don't care to discuss my life with you unless I initiate it:

A was recently diagnosed with ADHD. A majority of people now a days have heard of it. Yeah, the hyper kid that can't focus. That's us. Plus more. 

He runs away. It's called fight or flight. When faced with an obstacle he either fights (kicks, punches, spits, swears, flips people off, etc) or he runs. Yes, across busy streets, out of class and out of school. 

He also spends a majority of the day filled with anxiety over social situations. His brain is speeding and yet there is a major traffic jam. 

He has sensory issues. Tags on clothes, sock seams, smells, food textures and sounds. 

If he has one small thing happen in the morning, he can't recover. His day is shot and we spend the day walking on egg shells. 

I spend a better part of my waking hours between school and doctors appointments. I am tired. 

So I don't want to talk about it. When I see you in the school yard and you ask how he is, thank you. But I don't want to talk about it. 

When I've spent numerous hours with psychologist talking about symptoms and coping skills, I don't want to then turn around and talk some more. 

I now eat, sleep and breathe mental and social disabilities. And so does A. He is constantly being shuttled from councillors to doctors to therapist. He is tired of hearing about his "issues" and the last thing he wants to hear is mama talking about all these things that make him sad because he is "different". Yes, he thinks he is different. He cries about not being like other, about not controlling his impulses. 

So no, we don't want to talk about it anymore. We will fill you in on the important stuff. And when I need a shoulder, a good cry or just someone to say it will be ok, I will come to you.

The Blame Game

I've spent the past few months blaming myself for all of A's suffering. What parent doesn't question what they could have done better or changed when their child is diagnosed with a disease. I try to think back to pregnancy. I never ate sushi, I avoided all deli meats, never smoked, took my prenatal pills. Could it have been that occasional glass of red wine the doctor said would be fine? Maybe it was when I was supposed to be on bed rest but I had to chase a 15 month old around. Or maybe I should have breastfed longer then the 19 months I managed to get through. All of these things go through my head at least once a week.

I blame myself. I've beat myself down. I've cried uncontrollably while sitting on the floor of the shower. I've questioned getting out of bed because I was just not ready to deal and have even been medicated with anxiety pills and antidepressants.

It is the hardest thing I have ever gone though in my life.

And yet it's not even close to being as hard as everything A goes though on a daily basis.

We struggle as a family daily. I fight to keep my eyes open just to have 30 minutes quality time with the husband. I see the tired look in his eyes after dealing with a difficult A day and then having to comfort me as I cry from a long, exhausting day.

I'm just starting to learn that the more I blame myself, the more energy I take away from helping my baby boy. Yes, a good cry feels incredible and just as A fidgets to release his anxiety, I cry to release my own anxiety. 

As our journey continues, I've started to realize that educating myself rather then playing the blame game is the only way to help my hyper happy child.