There Is Always Tomorrow

I walked out of the train station today on my work analyzing every male face I came across. What was he like as a child. What does he deal with now. I find myself doing this as I wonder how A will be when he grows up. I've though a lot about this lately. What inner demons will he have to battle? Will he grow up and find love? Will he drive a car? Hold a job that he likes? Will my husband and I be able to go away on a vacation without worrying? And will R be able to take care of him when we are no longer able to?

Its a heavy burden I have carried on my shoulders since his diagnosis. It's the unknown. And my shoulders are tired.

I always tell my A that no matter what happens today, we can start off fresh tomorrow. It has become our mantra, a way to get through the difficult days and know that they won't last forever. It's also a comfort for me. That at the end of the night, when I lay my head on the pillow and drift off to sleep, I get 8 hours rest from the worry.

Lately his diagnosis feels new to me. I've started over with the research on how we can help him live his best life possible. I may not have a PH.D but I have studied more about autism then anything else in life. Research papers, case law, medicinal trials. We medicate, use essential oils, take probiotics, ABA therapy....you name it, I have tried it. It consumes my thoughts most of the time where I feel like there is nothing else.

And then their is sadness. A is a smart 8 year old. Smarter then most I'd say. He knows that he doesn't have friends because he scares them. Because who in reality, as a child, wants to watch a boy bang his head off a wall and think "that's normal". He's quirky with no filter. He will tell you exactly how it is, out loud, no indoor voice. Most people find that rude and insulting. I am just happy he is communicating.

When we received A's diagnosis of "moderate ASD", I knew it was spot on. Other kept saying "oh he's high functioning" and "he's so smart, he will grow out of it". You don't "grow" out of autism. You may learn coping mechanisms to get through life. The reality is, A can be high functioning when he has had his daily medication and all the stars have aligned. We love these days because his brain gets a minimal break from the anxiety of life and my brain gets a minimal break from the daily worry.

And then I think of our mantra: "There is always tomorrow".

I Use To Judge Other Parents

There. I said it.

I was that judgmental parent. The kind that I look at now and remind myself that karma. It's real.

Thou shalt not judge. I was raised on this. But yet I was one to give the stink eye to everything I am now.

1. "Don't let your kids sleep with you".

• Sleep is a very precious thing and when you have a child that wakes at 2am and will not go back to sleep, you pull down the covers, put on Nick at Nite and invite them into bed. I don't care what age they are......sleep is sleep. Especially when they are the energizer bunny from 6am - 8pm on a normal basis.

      2. "Fast food is the devil......specifically McDonalds"

• Chicken Nuggets are a god send. I'm happy your child eats fruits and veggies but my child only eats foods that are beige in color. Carbs all day long. Children are starving all over the world....I'm just happy he actually eats. Drive thru here we come!!!

       3. "Cook one meal and if he doesn't eat it, go to bed hungry".

• Tonight I made chicken nuggets for one child, spaghetti for another and then dinner for me and hubs.  3 meals is easier then listening to one child complain, meltdown and otherwise ruin MY peaceful dinner. Also, refer to #2 because he doesn't eat anything but foods that are beige.

       4. "He's too old/too big to ride in the shopping cart"

• I agree with this because who honestly wants to push around an 84lb child in a grocery store cart? The alternate however, is him running through the store, touching everything on the shelves, picking all the beige food he could possibly eat and having numerous adults tell me how to discipline my child. No thank you. So into the carriage he goes and we pray nothing triggers a meltdown.

I no longer judge. I wanna high five the mom pushing her kid in the shopping carriage. Who knows, she may have been up all night with a rambunctious child and her only hope of completing grocery shopping is promises of McDonalds' chicken nuggets (don't forget the ketchup).

What This ASD Family Wants You To Know

I see you.

You've changed your profile picture on Facebook to "Light It Up Blue".

You've liked my posts related to autism.

You may have even changed your outside lights to blue bulbs to show your support.

But what are you REALLY doing to understand and support those with autism?

1. Acknowledge that those on the spectrum, their families and loved ones and not just looking for you to be aware of autism, they and us, are looking more for ACCEPTANCE.

2. Teach. If you are a parent, please teach your children to be friends with the kids that are different. Teach them to be compassionate and understanding. Teach them to protect and defend the more vulnerable kids. If you are a teacher, make sure part of your classroom lesson includes peer inclusion. The world can be a very lonely place and depression is far more common in those with developmental disabilities.

3. Its called "Autism SPECTRUM Disorder" because there is a broad range or disorders. So while you may know someone whose child flaps her arms, the next child on the spectrum might not. Never assume our children will act a certain way.

4. There is no cure. Mr. A will be autistic forever. Kids grow up into adults and we have to focus on our adult ASD society as much as children.


The biggest thing you can do is be aware ALL YEAR LONG. Not just April.

Why We Chose To Medicate

You know, I was that mom.

The thought of pumping my child full of drugs scared me.

I looked into diet changes, therapy, schedule changes.

I didn't want my child to me a "zombie"......I didn't want to change his personality.

Ha ha ha ha ha ha ha!!!!! Yup, that is me laughing now when I look back and realize my child was a zombie before we started medication. He had a personality that was mean, aggressive and miserable.

Have you seen a 6 year old destroy an entire classroom?

I currently do not have a toilet paper holder because he ripped it right off the wall.

I've run down the street, chasing a barefoot kid running away because it doesn't know how to cope.

Now, 10 months since starting his first medication (which gave him horrible side effects) and experimenting with different types, different dosages, I can say medication gave us our son back. He's not a zombie but a fun loving kid that is now able to enjoy life. His Ritalin allows him to focus in school. The Tenex helps with his impulses, OCD and anxiety. Have you heard a 7 year old say I want to die? I don't hear it anymore since he started Fluoxetine.

Yes, these are very heavy meds that we watch daily for side effects. But without them, he was a shell.

And it doesn't work for everyone. I am by no means a medical professional.

But I am a mom who was lost, watching her child in a downward spiral. With the help of therapy, IEPs, ABA and medication, Mr. A is thriving.

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.

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........

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.