I understand that you may look at my child sometimes and wonder if we got this whole “autism thing” wrong. I see your puzzling expression. I hear your words.  “This is just what 4 looks like.” I hear your words in my head. And, I hear your words in my heart.

Sometimes I look at my sweet little man and I wonder how we got here. I think back to all of the meetings and appointments and diagnostics that lead us to this spot. I recall the hundreds of conversations with doctors and specialists and counselors and family members. I remember the uncertainty. The pain. The heartbreak. And, if I stop and think about it too long, all of those feelings rush back over me.

There are moments along this journey that I question everything. Sometimes I pass by the room where Grayson is playing and at a glance I see him playing peacefully with his trains.  I watch from a park bench as he approaches a peer to initiate play. At home  we sit as a family to watch a movie. And, all around me I see things that feel and look so typical. How can this peaceful boy who seems so typical possibly have autism? ?

Perspective is interesting. Perspective changes the way we see the world around us. The journey along the autism spectrum changes perspective. Well, it changes everything. And, as everything changes eventually your perspective changes too. You learn that things are not always what they seem.  You begin to understand that you have to ask more questions, dig deeper, learn more. Be more.

And because you need to, you do. You ask more questions. You dig to new depths. You learn everything there is to know. You climb and climb and climb to be everything that your child needs you to be. And along that journey you learn to see things differently. You learn to look closer. Your heart learns to see the things that your eyes protect you from.

You see, Grayson is not simply playing with his trains. He is sitting on the floor rolling the trains past his eyes in a calming and methodical way. His eyes are spinning around and around and he becomes mesmerized by the spinning wheels. And, as he watches the wheels spin around he recites every single word from an episode of PJ Mask that he watched over a week ago.

At the park it may look like Grayson is initiating play, but when I take a few steps closer I see that Grayson is not making eye contact with the child. He is ignoring the child’s questions. Even though it is October he is obsessively asking the child about his favorite fireworks color, a question he has been fixated on since the 4^th of July. The child struggles to understand Grayson.  Eventually, the child walks away.

Our peaceful family movie nights are moments of peace in between loud shrills imitating the sounds in the movie. Or, a quick elbow to my head replicating the way the spaceship flew through the screen. It is everyone sitting exactly where Grayson tells us to sit. It is Grayson holding the green popcorn bowl. It is no one else being allowed to take popcorn from the green bowl. It is orchestrated and contrived and we sit on pins and needles willing everything to go the way he needs it to go. Willing the peaceful moments to linger.

But just for a moment, sandwiched in between all of these behaviors and incidents and tantrums, he drawn me in with his big brown eyes and I enter his world. And from inside of Grayson’s world everything looks different. Inside of Grayson’s world, he is typical.

Perspective.

I do not know what it is like to have a 4 year old who is not on the autism spectrum. Grayson is my first child. Every “first” along my parenting journey is filtered through my very own autism perspective.

I do know what it is like to have a 2 year old who is not on the spectrum. It is different in so many ways from our 2 year old experience with Grayson. In fact, it is only as our youngest son moves through birthdays and milestones that we understand the true depths of Grayson’s symptoms.

As a first time parent you cannot know what you do not know. Before the diagnosis there were so many things that we chalked up to “just a 2 year old thing”. We were wrong. They were not typical 2 year old things at all; they were autism things. We know that now, but we did not know that then.

Too many times on this journey people say to us “that is just what 4 looks like”. These words are heart breaking. Because unless you have lived with a 4 year old with autism, you have no idea what 4 looks like in our house. I get it, kids are tough. 4 years olds are tough. They are persuasive and argumentative and irritable. They know exactly what buttons to push and when to push them. They are starting to figure out how to manipulate us and it is equal parts endearing and annoying.

And I get it, a lot of things that Grayson does may be typical of a 4 year old. But, before you say that to me remember this; my child is not typical. His life is not typical. Our parenting journey is not typical. Unless you have parented a child with autism, then this is just one perspective that you do not have. And, I hope it is one perspective that you never have.

Somewhere along this journey I accepted that my son is not typical.  I have already learned that he is so much more! So please, stop trying to make him seem typical.

JS

Hi. My name is Jessica. You might have seen my little boy in line at school this morning. You may see him in line at school most mornings. Maybe you have noticed that he is different from the other kids. Maybe you have noticed that we talk to Grayson in a special way. Maybe you have noticed that he loses control of himself from time to time. Maybe you have noticed that my son Grayson has autism spectrum disorder. And, if you did not notice that before…you probably noticed today.

You see, I am the mother of the little boy in line at school this morning who lost control of his body and his emotions. My son was the one making all of the noise, screaming and yelling just trying to be heard. My son could not understand why he did not get to be first in line today. My son, the same son who waits in lines at school every single day, just could not figure it out today. Today, he needed something different. And because he needed it so deeply, that need was the only thing that mattered to him. His body wiggled as he tried to explain his need. He sobbed tears of pain and frustration as his daddy and his teacher tried to explain the rules to him. He lost control of his body. He lost control his emotions. He lost control of everything. His need was in control. The way his needs are often in control of him. That is just one of the symptoms of Grayson’s autism that we encounter every single day.

In that moment there was nothing you could do to help. There was nothing anyone could say or do to calm him down. Once Grayson’s needs get that big, all we can do is stand back and help him pass through the moment without hurting himself.

This is a feeling I am familiar with. This is the most un-natural part of being Grayson’s mommy. When I see him needing something so deeply, and I am powerless to help him through it. And today, maybe just for a moment, you felt that too.

It is hard right? To watch someone struggling through something that we should be able to fix. I mean after all, we could just give into the need. Right? We could just let Grayson cut to the front of the line. We could let him be the leader. We could tell all of the other kids that Grayson’s needs are different and special, and that sometimes he needs to be in front. Sometimes, even when it is not his turn, Grayson gets to be the leader.

Except, that is not fair. If Grayson gets to be the leader whenever he wants to be, then he is not learning important life lessons. Then he is missing out on all of the things we wanted him to learn at school: taking turns, sharing, following directions, etc. And what happens to the child who was supposed to be the leader? They just have to accept that Grayson’s autism trumps their turn to be the leader? They just have to change and adapt because that is the thing that would make my life easier for the brief moment of time?

No.

No for so many reasons, but mostly this; no matter what obstacles lie ahead of us on this parenting journey we refuse to accept that the rules have to change to accommodate Grayson’s autism. I refuse to believe that I cannot help my child exist in a word with rules. I say “NO WAY” to the idea that other kids will need to go without so that Grayson can have exactly what he needs. I love my son with every single ounce of my heart. And, because I love him so deeply, I refuse to let him off that easily.

Do not get me wrong, I know what my son is up against. I feel the weight of every single thing we put on his shoulders. I see all of the rules and expectations and guidelines that govern his life. I think every time that we introduce another strategy or treatment that it will be too much. I wonder how he can possibly handle just one more thing. I ask myself how I can ask him to be anything more than he already is.

And then one day at a time I see him rise to the occasion. I watch him learn and adapt to the rules. I see him accept the strategies that we implement. I see him use those techniques to integrate himself into the world. I see him figure it out. One challenging moment at a time; he propels himself forward.

Autism Spectrum Disorder or not; 4 is a really hard age. There is just so much that they cannot understand. We look to these little humans and we ask them to follow the rules and use their manners and to be kind and polite. We ask them to do things that most grown adults struggle with. And, on top of all of that we are trying to teach them to be compassionate and accepting and tolerant of difference. Difference that they cannot really understand. Difference that we do not really know how to teach them.

I do not know how to explain all of the really awesome things about my son to you. I know what I know because I live alongside him and travel this journey with him every day. And, I still do not have all of the answers.

I promise you here, now, that we will not ask for special treatment. I will never ask you to tell your child that they need to give up their spot so that Grayson can take over. But, I do ask this of you, show me patience and grace and understanding while we work through this. Because we will. We will work through this.

I will lead my son through a life with rules and obstacles and challenges to overcome. And, because I am raising him to do so…he will follow the leader. He will follow my lead.

-Grayson’s Mommy

This I not like anything that I normally write about here, but I want to share my experience with you. At the surface, this has nothing to do with family or autism. Except, what I have learned over the past year is that I owe it to myself to take the time each day to workout and focus on my meal plan. I used to feel guilty carving out too much “me time” into my day. And then somewhere along the way I discovered how much better I can be for my kiddos when I am focusing on being better for me as well! We say this a lot in my online accountability group…it is all about BALANCE!

I have been dabbling in the Beach Body 21 Day Fix program for the better part of the last year. I decided that I want to really commit to the program in preparation for the holidays this year, so I purchased the 3 Day Refresh. This I not like anything that I normally write about here, but I want to share my experience with you.

Ok, so here it…my 3 Day Refresh experiences.

My box arrived on a Tuesday. I was half inclined to rip it open and start the next morning. However, I wanted to take the time to prepare my meal plan and grocery shop to avoid any room for excuses. I decided to start the Refresh the following Monday. On Sunday I grocery shopped and prepped my menu. They send you a “workbook” guide to fill in your menu selections. It includes a recommended eating schedule and the lists of all of the acceptable food. The box also contained 3 days servings of (1) Chocolate Shakeology, (2) Fiber Sweep and (3) Vanilla Fresh shake mix.

I went to bed Sunday night feeling focused, committed, and ready to take on the 3 Day Fix.

Daily Meal Plan:

• 6am – 10oz Water
• 7am – Chocolate Shakeology and ½ a banana
• 8:30am – Lemon Tea
• 10am – Fiber Sweep
• 12pm – 12 medium strawberries, Vanilla Fresh Shake, Kale, and 2 Tbsp. Hummus
• 2pm – 5 baby carrots, 2 Tbsp. Hummus
• 3pm – Green Tea
• 6:30pm – Vanilla Fresh Shake, “Veg Option”, 1 cup organic veg broth w/ basil
• 7:30pm – Chamomile Tea

Day 1:

Unfortunately life played a little “ha ha” on me going into Day 1. My 4 year old son woke up at 1:45am and stayed awake until nearly 5am. So, I went into day 1 with about 4ish hours of sleep under my belt. Not exactly a winning strategy considering I would be giving up my 3-4 cups of a coffee per day. I decided that to survive the Refresh I would absolutely need the black coffee that they listed as optional. So I mixed 6oz of STRONG black coffee into my morning and afternoon shakes.

I went into the morning exhausted, but otherwise focused and committed. I enjoyed my ½ banana and Chocolate Mocha(coffee) Shakeology while I commuted to work. After I got settled into the office I made myself tea. The morning passed very quickly and before I knew it 10am arrived and it was time to throw back the Fiber Sweep.

I have a number of friends in the 21 Day Fix world. I was warned that the Fiber Sweep was the least pleasant part of the 3 day Refresh. As I poured the packet into the water I could tell that it was not going to mix in very well. If you are someone with a texture issue, this may not be the best 30 seconds of your life. I took the first sip expecting to gag, butit actually was not terrible. I slammed it back in about 20 seconds. No harm, no fowl.

About that time, 10:05am, I noticed my stomach rumbling a bit. This was not really surprising since by this time one a normal work day I had already consumed 2 carb servings (peanut butter on wheat toast and granola in my Greek yogurt with berries). I decided to tune out my hunger by diving into work. And, diving into the 100+ ounces of water I needed to drink for the day. That was a winning strategy! I made it lunch. On the first I welcomed every single morsel of the multi-course lunch: fruit, hummus, veggies, shake, oh my! The afternoon sailed by as well. I was worried that the 5 carrots and 2 tbsp. of hummus would not be enough food to hold me over to dinner, but it really did!

On this kind of diet I think most people probably eat dinner by 6pm and then go to bed early to avoid hunger. Unfortunately, that just is not our life. The earliest I was able to eat dinner each night was 7:30am. The time from the carrots/hummus to dinner was by far the hardest. Thank goodness for water and tea. Night one 1 went to bed feeling slightly hungry, but ready to take on another day.

DAY 2

I woke up on day 2 feeling the way I feel on a Saturday morning when I wake up after not drinking any alcohol. I felt lighter and happy and very refreshed. I got a great night of sleep (thank you kiddos) and woke up ready to take on Day 2. I started the day with 10oz of water. Since I worked from home on Tuesday my morning was less chaotic. I had ½ a banana and then made a Chocolate Shakeology with almond extract, water, and ice. I drank my shake while I walked my little man to school. I actually had to walk to the school twice because we forgot something for his fieldtrip. By the time I got home the second time I felt like I had maxed out on cardio for the day given the really low calorie count of the Refresh.

Ok, way more”hangry” today then the first day. I was going strong in the morning and then around 4pm the hunger set-in. Of course it does not help that my crazy life and schedule usually result in another later dinner. So at 4pm I drank a cup of tea and I had to accept the fact that my next bite of food would be 3+ hours later. By the time we finished our family commitments for the day I was able to begin prepping my dinner. The hunger took over my usual pleasant self and somewhere between 7:30 and 8pm I began irrational lashing out at my husband. Whoops. We both knew it would happen at some point during the 3 days. 900 calories a day is no joke. And, at that very moment he was standing in between me and my bland broth and kale! I advised him to steer clear of me until Thursday. He obliged.

I could barely eat my broth because my hands were a bit shaky. But, as soon as I got the kale and broth down, I felt like a million bucks. I had a tough time finishing the vanilla shake because I just felt so full. I was tired from a long day and went to bed excited to have made it through 2 days.

Day 3:

The headache set in upon waking up on Day 3. I could tell that my body was changing, and quickly. I still had the same feeling of lightness. And, I was surprisingly energized. But, the headache arrived first thing in the morning and persisted throughout Day 3. I imagine this is why the Refresh is only 3 days long. My body was letting me know that it was just about ready to be done with this low-cal business.

My stomach rumbled on and off throughout most of the day. Luckily for me by this point my commitment was strong. There was no way in heck I was blowing 3 days of hard work with only hours to go. I hunkered down with my water and threw myself into work to get through the day. At both lunch and dinner I struggled to get all of the food down. It is amazing how quickly your body can change relative to the food it wants/needs. This was an important take-away for me.

I headed into bed around 10pm and told my husband not to be alarmed if he woke up at 1am and heard me doing a kitchen raid. Kidding J

Ok, my take-aways:

• I needed this! I needed to prove to myself that I could commit a meal plan, demonstrate will power, and say NO when I wanted to say yes.

• I lost 10 pounds in 3 days. Yes, I know, that is not healthy. Yes, I know, I will probably gain some of it back. But, what I really gained is the focus and commitment that had been lacking. And I know by restoring those things I can keep the number moving in the right direction.
• I wish the vanilla shakes were worked in as snacks rather than with lunch and dinner. Sometimes I felt as if I was going way too long in between eating and that at each meal I struggled to get all of the food down.
• It is really just not a lot of food. So you kind of have to wrap your head around that, accept the challenge, and push forward.
• Be smart in everything you prepare. Look through the book and really maximize each thing you get to eat. Strawberries, Watermelon, banana, and Cantaloupe are by far the most substantial servings of fruit. Do not mix your fruit into your shakes…savor each thing you get to eat.
• I loved Kale for my lunch veg portion, but for dinner the other options are more filling. I recommend the asparagus or green beans.
• FLAVOR…use the “free foods” list to enhance this experience. The vanilla fresh is a bit grainier than normal Shakeology. So, I used almond, pumpkin and vanilla extract to enhance the experience. In the veggie broth I used cayenne and basil. And, each night I put ¼ of my veg dinner portion into the broth to make it seem like a more substantial soup.
• The headache and dizziness for 4 hours on Day 3 was really the only negative side effect I experienced. And, as soon as I drank the fiber they both subsided.
• If you are going to refresh do it during the week! Set yourself up for success. There are just too many temptations. I had to block my work calendar for lunch all 3 days to let people know that I just was not available. I sat through a meetings with donuts, brownies, and said “no” to pizza with my mom before she left for 2 weeks. It was not easy, but it was all a part of recommitting to myself.

Ok, sorry for such a long blog! I wanted to share the full experience and there you have it! All in all I would definitely do it again! In fact, I think I will do it again the first week in December. I think there is a lot to be said about exercising our self-control. We learn something every time we push ourselves to do something that is not easy.

I will link my coaches’ info below! If you are interested in checking out the refresh or any of the Beach Body programs (I love 21 Day Fix and Piyo) check it out!!

 

JS

My Beach Body Coach: Kelly Davis (http://www.fitfamilylifestyle.com/)

I am building a Sufi’s gate in my life, and I am asking all of you to consider doing the same.

The words that we use have so much power. Our words have the power to build people up and to tear people down. Our words have the power to heal and the power to destroy. Our words have the power to change the world for the better or the worse. The power of our words is so much bigger than we will ever know or understand.  And, with this enormous power comes enormous responsibility. Each and every day we have a responsibility to use our words to build a world that is filled with love and tolerance and acceptance.

I understand that changing the world seems like a huge task. It seems big. Maybe too big. But, I know that it does not have to be big. I know that it can start small. It starts one word at a time, one day a time. It starts with each and every person carefully selecting the worlds that they use. It starts with the words we teach our children. It starts with the words we use to respond to the words of other people. It starts with Sufi’s Gate.

The principle of Sufi’s gate is simple, before you say anything allow your words to pass through 3 gates:

Gate 1: Is it TRUE?

Gate 2: Is it KIND?

Gate 3: Is it NECESSARY?

I can think of too many times that I hear words that did not pass through these gates. And, because I am human I know that there are times my own words do not pass through these gates. And, in that moment the gates do not seem important. It is just one comment. Just one day. Just one incident. Just one example for our children.

But, that is just not true. Everything we say is seen and heard and observed by all of the people around us. And, when we say things that do not pass through these gates, we give other people permission to do the same. We start to create a world around us that is unfiltered. Unsafe.

I am raising a child with autism spectrum disorder. I lie awake at night worrying about the way that the world will welcome him. I think about the mean things that people might say to him. There is a special part of my heart reserved for this fear and worry. Fear that the world is not gentle enough for him. Worry that I cannot change the world in time.

I have heard with my own ears children say hurtful words to my son. I have seen with my own eyes children push him away. Maybe because he is different. Maybe because he did not understand how they were playing. Maybe because of the words they used. The words he was unable to use. And in that moment, instead of showing patience and tolerance, the children used hurtful words and pushed my son way.

My mommy heart broke.

You see, somewhere along the way they learned that this was ok. Somewhere along the way someone gave them permissions to use hurtful words. Words that were not true or kind or necessary.

I do not live in a glass house. I am the first to admit that my child hits and pushes. He has a sensory processing disorder and sometimes he loses control of his wiggly body. And, even though I know all of the reasons that my son is hitting and pushing; it is still my responsibility to teach him about better ways to communicate his emotions and needs. I teach him to process his wiggles. I teach him to use his words.

In our house we are being watched non-stop by our sons. They hang on every word that we say. They are learning from us how to behave. How to be kind. How to go out into the world and use words. Words that have power. Power for good. And, power for bad.

For this reason, and so many more, I am building a Sufi’s gate in my life. I am taking responsibility for my words. My words will be true. My words will be kind. My words will be necessary. And, maybe one word at a time we can create a safer world for all of our children.

Will you do the same?

JS

 

My son Grayson came into this world on his due date. My closest friends and family often laugh about this and say “of course your child came exactly as scheduled.” I am a planner and an organizer. Nothing brings me more joy than when all of the pieces of my life are arranged just so. And so, when my contractions started the evening before my due date I laughed to myself and thought “now this is a kid after my own heart.”

The irony of this, or course, is that arriving on his due date was the first and last thing that Grayson ever did on-time or just according to my plan. Every single moment since has been part of a crazy, amazing, wild, wonderful, and terrifying journey.

Grayson started to shake things up for us immediately. As in, while I was still in labor! My unpredictable son came out with the cord wrapped three times around his neck. After delivery, when I learned about the cord, I burst into tears. Mostly because I was a total hormonal mess, but also because I just experienced my very first new mommy lesson…there are so many things that we cannot control or plan for.

I learned in that moment, and in so many moments since, that parenting is not predictable. It is not easy or organized. It does not fit nice and neat into a schedule. Being a parent is the most terrifyingly wonderful experience. It is a whole bunch of days strung together of parents doing the best they can. It is nights of going to bed wishing you could have done more. It is moments of second guessing and panic. It is a complete loss of control. But, it is a total gain of so many wonderful things.

Grayson continued to keep things interesting for us in his first few months at home. He was such a happy and content baby. I spent many nights getting lost in his big brown eyes. And then one day around three months something just seemed off. Grayson seemed to have flu like symptoms accompanied with a rash on his body. I did my fair share or crazy mom Googling and then I decided to take it to the professionals. When the cold did not pass after a week and the rash did not clear with cream, the pediatrician recommended allergy testing.

As awful as you are imaging the process of allergy testing a three-month-old…multiply it by 100. They drew blood from my sweet baby while I cradled him in my arms. In my memory of that day the needle was 18 inches long (it gets longer every time I recall this tragic event). After 24 hours of processing the verdict was in; Grayson was allergic to eggs.

As a nursing mom the egg allergy meant a total overall of my diet. Did you know that eggs are in flipping EVERYTHING? We buckled down and I made it through 9 months of egg-free eating. Our pediatrician believed that Grayson’s early exposure to eggs through my breast milk along with breast-feeding for a full year could potentially help Grayson outgrow his allergy. At age 2 Grayson’s blood work showed a significant decrease in the allergen level. And by 2.5 we successfully integrated eggs into Grayson’s diet. Ironically enough, to this day he absolutely refuses to eat a plain egg.

Just three months after our egg monitoring and allergy worrying ended, Grayson was diagnosed with autism. And, I have come to learn that that is what the parenting gig is all about; moving from one obstacle to the next with as much grace and sanity as possible.

When Grayson was allergic to eggs we became experts in egg-free living. We purchased an “egg allergy” ID bracelet and we made sure that everyone in our life knew about the allergy. We took our own snacks everywhere we went. Instead of the traditional first birthday “cake smash”, Grayson smashed egg-free ice cream. Grayson was allergic to eggs. So, living egg-free became a way of life.

We did the same thing when Grayson was diagnosed with autism. Well, not right away. First we hid for a bit. And cried. And then after we hid and after we cried, we became autism experts. We look for opportunities to know as much as we can. We attend seminars, we read books, and we network with other autism families. Living with Grayson’s autism has become a new way of life.

I recently ordered Grayson an autism ID bracelet. And, as I purchased the bracelet I thought back to that tiny egg allergy bracelet he had as a baby. And, then my heart grew a little sad. You see, Grayson outgrew his egg allergy. When the allergy was gone we unclipped the bracelet and threw it in the garbage. Happy to be rid of it. And this time, it is likely we will never throw away Grayson’s autism ID bracelet. Whether he needs to wear it every day as he moves through his life is yet to be determined. But, it is a part of him now in a way that is very real. Maybe too real. He will not outgrow his autism. Autism is a lifetime diagnosis. His symptoms may change. The treatment will change. His needs will change. But, Grayson has autism, and that will not change.

My beautiful, smart, and silly boy came into this world exactly as scheduled on his due date. And, in every moment since he has kept me guessing.  I will follow him wherever this journey takes us. I know that it will not be planned. I am pretty sure that it will not be predictable. I can almost guarantee you that it will not go according to schedule. But, do you know what I do know? I know that it is going to be wonderful! And, that, you can plan on!

JS

Do you know how my heart breaks when I cannot help you? I feel emptiness inside watching you battle though something that I cannot control. Helplessness. So many times in a day I will myself to be more for you. To look for answers to questions that I do not understand.

Do you see through my front of strength? If you look just below the surface you will find the place where I keep all of my fears. I need to protect you from that place. When you look at me I do not want you to see fear. I want to be the strength you need. The strength that you deserve.

I see you. I hear you. I feel your pain as if it is my own. I know your heart. I know your heart because it used to beat inside of me. I choose to enter your beautiful, magical world. I look all around me and try to experience it the way you see it.

I hear a loud sound and without looking I know that you are covering your ears. Oh, how I wish I understood why. Did it surprise you? Does the sound make you feel pain? Do you feel safer when you block out this nosy world? Is this sound different in your ears than it is in mine?

I see a pond and I know you will run to it.  Water makes you happy. Water brings you peace. Other children play at the park and never notice the pond, but the water calls to you. It draws you in. Why? Is it the way the water moves? Do you like the feeling of touching the water? Is it the way the water shines? Why does it make you feel so happy?

And despite all of my efforts, I simply cannot experience the world the way you do. And, because I cannot feel it, know it, I worry that I will fall short in helping you navigate through it.

If only you could explain to me. Tell me in words the way you feel. Help me to know the things that we need to change. To soften. To make less. Help me understand the things that turn our calm moments together upside down. Tell me about the things that race into your head and keep you from sleeping. Help me understand why you need things just so. Explain to me your fears about playing with your friends.

If you could just tell me then I know we could figure it out.  Together. Together we will work day by day to adapt your needs to this world. And, then one day at a time we will work to adapt this world to your needs. I just need you to tell me. Or show me. I just need to know. Because not knowing is the hardest part. Please, tell me.

But you can’t. Or you won’t. Or something in the middle of the two.

And because you cannot say it, and because I cannot know it; we go on each day in this place of unknowing and fear. We each live in worlds that feel bigger than us. Faster. More. For you it is autism that makes you feel small. For me it is my inability to help you. I feel small in a way that no parent wants to feel small. And, I imagine you feel small in a way that no child wants to feel small. We are both small, living in worlds that seem so big. Too big.

And, so we look for ways to feel big. We try new things every day. We look for certainty in uncertain places. Each day you understand a little more clearly the things that you need. I am learning to pay attention to your world and the things that impact it. And I as watch I see that you are doing the same thing. You are learning about the world and the way that you need it to be.

And each day, as you know your own world a little better, you come a little closer to showing me. To telling me. And when that day comes, I will know. And, because I will know, I will be bigger. And because I will bigger, I will be strong enough and brave enough and big enough to help you take on this world.

I know you can’t. I know you won’t. But someday if you can, if you will, just tell me. And then we can both be bigger together. Big enough to take on this world. Together.

JS

 

 

 

I know that the word “normal” is taboo. We are supposed to say “non-typical”, or “living with difference” or “different learner”. And, we all do the best we can to remember all of the rules for what we should and should not say. We find socially acceptable ways to express our feelings. We put rules and boundaries in place to protect the feelings of others. We live by those rules. And, that is a good thing. It is good to be conscious of other people and to choose words carefully.

But last night, despite all of my understanding of the rules that govern difference, “normal” was exactly the world I was looking for. And, so I used it. I used it unapologetically. I looked over to my husband in the car last night and said (with a smile beaming across my face) “It was so wonderful to feel normal today.”

Yesterday we attended the Autism Speaks Blue Man Group’s sensory friendly performance with our sons. I went into the day with the intention of providing an amazing sensory experience for my son with Autism Spectrum Disorder, but I came out of the day with so much more. You see, when we bought the tickets we were only focused on the experience and what our children would take away from it. What I did not expect was the feeling of peace that the day would bring me. A feeling of comfort. Of Freedom. A feeling of success along a parenting journey that is often met with failure.

As we sat in the theater I watched in awe of everything happening around me. I sat surrounded by children and adults of all ages living with autism spectrum disorder. People who deal with difference every single day. People who work hard to manage their symptoms. People trying to find their place in this world. People who often struggle to find the world they need in this world that we live in.

And, on that day, those two worlds collided in such a beautiful way. You see, at this event no one worried about making too much noise. Nobody feared that they might “ruin” the show for the other viewers. People did not hesitate to wave their hands in the air or talk as loudly as they pleased. In that moment, in that place, no apologies were necessary. There was no scrambling to minimize the symptoms. There were no parents crying tears of shame in the bathroom stalls. There was no hurriedly packing up and running out to safety. That place was their safety. It was their day. It was their world, and they were so kind to invite us in.

It was the first time in a very long time that I let my guard down in public with my son. I did not know what to expect going into the day. In fact, in the opening moments of the show I did my typical routine of assessing our fastest escape route. And, as I scoured the room for my exit I found something I did not expect to find. I found permission to let go. To my right I saw a young girl rocking back in forth in her chair. And beside her the mother rubbed her back and chatted with a neighbor. In front of me a young boy sporadically spurted words and phrases. Beside him his dad casually handed him snacks and smiled.

I glanced to my side and saw my own son in his noise cancelling head phones looking around the room. I was thankful that he was quietly taking it all in. But, in that moment I gave myself permission to let him experience this day in whatever way he wanted and needed to experience it. This was his day. His world. And, because he so tolerantly lives in our world every day; a world with rules and regime and too many expectations, today would be just for him.

During the show my son sat. He stood. He jumped up and down. He wiggled his way up and down our row. He said loudly “Ok, I’ll see you tomorrow” to anyone who would listen. He had his noise cancelling headphones on. He had his noise cancelling headphones off. He was on my lap, on the floor and everywhere in between. He told us when he needed a break and we went to the calming room for some quiet. He watched in awe at the visual stimulations in the theater. He asked to “please have some cereal” when the Blue Men ate their captain crunch. He sat amongst all of the other people waving their hands and shouting loudly; and in that moment everything about my son and his behaviors was completely normal.

You may not understand that comment. You may want to judge me for using that word. And, I get it. I get all of the reasons why I should not compare my son to this perfect idea of normal. But, it is not my child that I am comparing. My son is wonderful and intelligent and creative and funny and so completely 100% who he is. He is constantly moving the bar up and down and side to side and all around. He is our normal and wonderful Grayson. But his life, our life, is not normal.

It is not normal to stay home because you live in fear of the things you cannot control in the real world. It is not normal to put your child into twenty-five hours of therapy at age two. It is not normal to live in a world filled with treatment goals and progress reports. Nothing about our autism journey is normal. It is scary and filled with uncertainty. It forces us to be stronger than we know how to be. It forces our son to be more adaptable and tolerant than he knows how to be. So each day my normal family works hard to live a life that is not normal.

But yesterday, for just a simple moment in time, I felt normal. I gave my anxiety and fear the night off. I did not feel compelled to ask Grayson to keep his voice down. I did not have to help restrain his wiggly movements. I did not do anything to control or manage the situation. I just sat in a theater with my wonderfully wiggly son and watched the twinkle in his eye.

JS