When I found out that we were expecting our first child I was so overcome with excitement about all that the future would hold. I imagined days of baby snuggles. I imagined a life full of love and smiles. I thought about all of the adorable outfits and the baby gear that would take over our life. I saw a future that was full of adventures and firsts. First steps, first words, first vacations, first loves, first heartbreaks. My head filled with expectations of so many typical experiences that I would share with my new family. And, it truly has been a blessed life.

My life since starting a family has brought so many of those visions for the future to life. I still remember the day Grayson took his first steps. Some day he will be 18 and will be furious at me for recounting this story, but it too adorable not to share. Gray was 13 months old and his eyes were filled with desire to take his first steps. It was just after bath time and I had finished powdering his naked butt. Out of nowhere he rolled over and pulled himself up to standing. James and I positioned ourselves on either side of him and he took his first steps. And as he walked from me to his daddy white baby powder puffed out of his butt cheeks with each step. And that was it, from that moment forward if Grayson was going somewhere he was walking. And that lasted all of 2 days before he learned to run. And still now, if Grayson is going somewhere he is running. Our life with Grayson has been filled with so many of the firsts that that I expected during my pregnancy. But it has also been filled with many things that were not a part of the perfect family picture I created in my head all of those years ago. The truth is that little girls only dream about marrying prince charming; they do not dream about marrying the wrong guy and then getting a divorce. And the family that they dream up is filled with perfect children who hit every milestone on time and swiftly achieve new skills. No one dreams about raising a child with a special need. No one dreams about spending hours on the phone fighting for services. Or losing sleep at night wrenching over making the right decision. Or worse, the wrong decisions. The lists of “firsts” we dream up does not include speech delays or diagnoses or IEP meetings. Those things are messy. And no one dreams about messy. We want to imagine a life for our children that is free of struggles or challenges. Free of judgment. Free of hardships. Free of obstacles to overcome. All of these things were not part of the plan in my head for my family. They were not a part of how I imagined our journey. And yet, here we are. Our life is full of firsts that we were not prepared for. It is full of moments that break us down. It is full of making decisions about things that we do not feel equipped to decide. It is full of things, little and big, that make me wish I were stronger.

I want to deliver an authentic representation of our life on this journey. And so I will tell you this; this has been a tough week. A week filled with emotional highs and lows. A week of big conversations and decisions. A week of learning how far we’ve come and how much further we have to go. You see, my big guy turns 4 on Sunday! And when your child is living on the spectrum birthdays are a big deal. Because at each birthday we reconvene with our teams to evaluate Grayson’s progress and our plans for the upcoming year. We meet annually with our IEP team. IEP stands for Individualized Education Plan. This is a plan that documents the necessary accommodations and the goals for a student with a special need in the school setting. Gray’s birthday falls at an odd time in IEP land, just 1 month before the end of this school year. So we meet and discuss and determine things that may or may not still be relevant factors in September at the start of a new school year. But, it is a requirement of Grayson’s IEP; and so we meet and discuss and determine things. And then we wait and see. There should be an entire chapter in parenting books about “waiting and seeing”. Sometimes it feels like this is our primary parenting strategy. Waiting and seeing. Waiting to see how things change. Seeing how things develop while we wait. We wait and we see and we hope. And sometimes while we wait and see we lose hope. But that’s the thing about waiting and seeing; there is always time to lose and regain your hope.

This week started with a big high! I brought together a bunch of fabulous women to celebrate Autism Awareness month in the name of jewelry, delicious food and wine! I recently discovered a jewelry line (Keep Collective) that is selling puzzle piece charms this month and giving proceeds to the Holly Rod Foundation to benefit Autism Awareness initiatives. I do not usually need an excuse to shop or eat or drink wine. But this was such a great way to come together with people who are supporting me on this journey (in big and small ways). It was such a wonderfully positive note to start the week on. I was able to share a piece of my life, of Grayson’s journey, and it was a great night.

Bright and early the next morning I headed to the grade school with Grayson for his weekly speech and OT appointments. These are the current services that Grayson receives through his IEP, 45 minutes one time per week of speech and OT. It had been month since I was able to attend (insert loads and loads of working momma guilt) so I was happy to see all of his progress. Using visual cues he worked with his speech therapist to tell a story about our recent family trip to Florida. It was amazing to hear Grayson put words to his memory of this special time that our family spent together. These types of stories or memory sharing sessions do not happen very often. We long for the ability to sit with Grayson as the end of day and hear details about his day. What he did, where he went, who he saw, etc. But this type of discussion is beyond Grayson’s speech and language ability. If I ask him if he went to school, he may say yes. If I ask him to tell me who his friends are, he may give me a name or 2. A lot of time he just repeats things that we say. For example, if I say “Grayson did you have fun at school with Gina today?” He may say “school with Gina today”. And while we long for more, we know that we are lucky to be where we are today. And we stay hopeful that these types of interactions will come. I watched the speech and OT session for an hour and then I walked Grayson out to the car so that he could zoom off to his next destination; 3 hours of Montessori school with one of his Mercy Options Techs. Then I went back into the school with my husband to convene our IEP meeting. There were a few new faces at this meeting. You see in past meetings (Grayson is not quite 4 years old and we already had 2 IEP meetings under our belt). This meeting was different though because next year he will be a full-time 4K student in the district. I invited our Case Manager from Mercy Options to join us. This is a really important note for parents out there struggling and fighting to understand their rights…YOU ARE IN CONTROL! Yes, the school coordinates the meeting but you are allowed and entitled to include anyone you want to include. Yes, the school may fight you (ours did not because they are amazing and they truly want the best for Grayson). But your voice and your understanding of what is best for your child trumps everything. Do not let yourself get pushed around, because once you lose your footing it is difficult to retain it. I developed an approach a long time ago, well about a year ago but that feels like AGES at this point. My strategy is to treat all meetings about Grayson’s care as business meetings. They are not counseling appointments or sessions for me to air my grievances. There are so few moments that I get to spend face to face with the people providing care to Grayson; and so when I am in those precious moments I do not waste a single one recounting the sad or hard details of our journey in search of understanding or praise. I do that on my own time, with my own team. This is Grayson’s team. So James and I and our Case Manager were joined by the speech therapist, the OT, the Special Ed coordinator, a special Ed teach for the grade school, and a 4K teacher for the Grade School. We reviewed the plan and goals for Grayson as he prepares to enter 4K. We went around the table sharing wins and improvements from the previous year. We spoke about concerns with the new environment and ways that we could help Grayson integrate into his new environment. It was a great conversations, but it was heavy. And I left feeling heavy.

The very next day (today) I woke up early and drove to Janesville for our Mercy Options check-in with the Psychiatrist in charge of the Mercy Options Autism Program. We meet every 2 months to discuss overall treatment updates and goal status. In retrospect, it was probably a bit much to schedule both of these meetings on back to back days, but when you live life by a strategically intricate color-coded family schedule…there is not a lot of room for flexibility. I’ve included some pictures below from this meeting. I remember the first time I got off the elevator and saw the “autism this way” signs with the arrows. And I laughed to myself and thought “yup, that’s us.” It is funny the things you encounter along your journey that feel so real and so surreal all at the same time. This meeting again was very positive. This was a much more informal setting. I feel very close to our team and we speak easily about the positive and negative things happening in Grayson’s world. These people see Grayson regularly, so they know who he is. They know what his day-to-day life looks like. They are such a huge part of James and I’s support system. So these meetings usually feel like a safe place to land. I can tell them with ease about the fears I have for Grayson and Rowan’s relationship. I can give them examples of parenting strategies that are not working. I can tell them things that are hard to say out loud because I know that they are on our side.

This part may be tough for people to understand; even though these meetings were filled with a lot of positive reports and reviewing new and exciting goals for Grayson, they are still incredibly difficult. They are filled with positive energy that help propel us forward. But these meetings are also very emotionally charged. We take in a lot of information and we do our best to process it. We do our best to hear it. You see, we may be talking about 4K or the month ahead, but I am a parent, so I am not just thinking about 4K. I am listening to this team tell me things about my child and I am wondering (read: worrying) how this will change and adapt and evolve as he grows older. I cannot help but wonder if we will still be in these meeting 10, 15 and even 20 years down the road. I listen to them broach subjects like assisted exams and state testing and wonder what the future holds for my son as it relates to those topics. I listen and wonder and worry. And the worry does not go away. The worry stays with me even after we have left the meetings. And it hangs over me as we snap back into our normal routine. So I let the thoughts linger in my head. I let them seep into my daily routine. I do this because I am Grayson’s mom and it is my job to have these thoughts. To be always thinking of the future and pondering the ways to push us forward. But sometimes it is just so hard. This was a hard week. There have been a lot of hard weeks, and I am sure there will be a lot more ahead. But I am doing tonight what I do at the end of a lot of hard days, I am preparing to move forward. Ever moving. Ever changing. Ever embracing this journey.

These meetings, this diagnosis, our Autism Spectrum Disorder  journey was not what I expected during my pregnancy. But sometimes the things we expect the least have the most profound impact on the life we live. The legacy we leave behind. Grayson is a work in progress just like all of us are. The greatest expectation any new mother has is to be overcome with an abundance of unconditional love. And so maybe there are things that I did not expect, but that expectation has come to fruition in ways and to depths I never imagined. I expected to be happy. And, I am.

JS

I would be lying if I told that there are days that are easy. The truth is that there are just days that are less hard. Things that are simple for other families are struggles for us. In the beginning, being different from other families was difficult for us to accept. Seeing that other families could easily engage in the “normal” family interactions that we struggle through is frustrating.  It makes us long for the things that we thought would be a typical part off our family routine. Simple things like eating dinner out as a family or sitting on the couch in the morning watching a show together. Most of the moments in our life need to be controlled. The control helps Grayson move through the day with as few triggers as possible. But living a life that is so full of control, so full of rules and boundaries and strategies, is exhausting for all of us. We struggle to understand and cope and move through the days; and we see that the people around us are struggling for the same understanding. In the spirit of autism awareness month I want to share our symptoms with you. I want to make sure that you understand that this is just one experience; our experience. These are the symptoms that are a part of Grayson’s Autism Spectrum diagnosis; and they are a part of the journey that we are on as parents. His symptoms, like many things in life, seem to be fluid. Just when we think we have it figured out, just when we believe that we may actually be getting our footing…they change. And so we change. You see this whole journey is about one thing; Grayson. We live (sometimes fight our way) through the symptoms and work towards a great acceptance for our new normal every day. We recognize that our life is perfectly imperfect. We are not afraid to show are battle scars, because we have earned every single one. We are doing this together, as a family.  These symptoms may define Grayson’s autism, but they do not define our family. They help us set goals. They help us move forward. They help us understand the road ahead; prepare for it. They give us hope as they change an evolve; hope that if they can change then they can certainly improve…maybe even disappear. This information is not even a little bit “medical”. This is just one momma’s interpretation of the symptoms she sees her kiddo battling every single day…

Speech Delay. I’ve already spoken a lot about Grayson’s speech delay. This was really our first indication that Grayson was experiencing a delay. And his speech delay has continued to be a prominent symptom. In the beginning Grayson struggled with verbal communication. He used a lot of gestures to try to communicate his needs and his wants with us. At the time of diagnosis, Grayson was 24 months old and his speech was evaluated to be at the 12-18 month level. So he was speaking at just over ½ of the level appropriate for his age. Speech was a huge focus in the early part of treatment. We needed to provide Grayson the tools to communicate his needs to us. You see when grown-ups talk we use a lot of “extra words.” And those extra words complicated Grayson’s ability to understand and they hindered his ability to learn how to respond. So, we peeled away the extra words. Sometimes it sounded like we were a family of robots living together in this house. Our sayings and phrases become very simple and very regimented. We worked a lot on “I want” and “I need” sentences. We worked on replacing gestures and pointing by brining 2 options out to Grayson and helping him tell us in words which ones he wanted. We worked on introducing simple, one-step commands to Grayson. And we rewarded him when he was able to follow the command. Once Grayson was regularly communicating his wants and needs we began working on descriptive words. Instead of asking us for the car he could ask us for the red car. Over time Grayson started adding more and more words to his vocabulary. He started repeating phrases that were familiar to him; and he was using them in the correct context. Then the goal shifted to getting Grayson to use phrases or sentences that he was coming up with on his own; rather than repeating. A year after Gray’s diagnosis he was re-evaluated for speech. At the time he was about 45 months (3 months shy of 4) and he was speaking at a 30-36 month level. This is considered a HUGE turn around in just 1 year. Grayson was speaking way more that ½ of the level appropriate for his age. Today in the moments when we struggle to communicate with Gray, and believe me there are still many, we remind ourselves of this progress. We think about how truly blessed we are that he can tell us all that he has told us over the past year. Sometimes we will just be around the house after dinner and Grayson will come up with a 7 or 8 word sentence all on his own. Every single time it brings me to the point of tears. I think back to the days in the pretty recent past when I feared that he would never be able to communicate with me. I worried that I would never know his true wants and needs. And now he is not also communicating, but he is using that communication to initiate interactions with us and with his peers.

Inappropriate social interaction. Many of Grayson’s other symptoms are linked to social interactions. For example, Grayson struggles to appropriately interpret and respond to various social situations. He perceives emotions in a very particular way and sometime it is not the way that people are prepared for him to respond. The social part of an ASD diagnosis is the most difficult one for people to understand. Because on the outside you may see my son smiling and laughing and near his peers, but there is so much more going on under the surface? If you spend time with Grayson you will begin to notice that he is in a constant state of flux. You can almost feel an energy coming off of him. Sometimes we say in sarcasm that Grayson is “coming in hot”, but this is actually a pretty accurate way to explain. Grayson is always reeling, always buzzing. He has so much stimulation bottled up in side of him that sometimes he just bursts. The bursts can be good and bad. And both the good and the bad can be difficult to navigate.

• Over Excitement: Sometimes Grayson is so excited by something that he just needs to smother it. Perhaps this is playing with a particular peer, watching a specific show, holding onto an object that excites him, hearing a noise or sound that he wants to imitate, seeing a person who he is very attached to, and the list could go on and on. Grayson is a very happy individual and there are so many things that fill him with joy. But a lot of times the joy that he feels comes out in ways that do not make sense to other people. A perfect example of this occurred when we were traveling to Florida last month. We spent a little time in the Children’s Museum within the airport. And, during that time Grayson met a little boy in the pretend airplane. There were quick friends and they began working to fly the airplane. At one point this little boy made a loud screeching noise to simulate an airplane noise. Grayson liked the noise so much that he got very close to the little boy and repeated loudly. And then more loudly. And then even louder. And then so loud that the little boy retreated to his parents. So Grayson followed him, all the while continuing to make the noise. A little later in the day we ran into the same boy at the gate for our flight. Even though hours had passed (we were trapped at O’hare for 8 hours awaiting our plane) Grayson remembered the boy and the noise and repeated the noise immediately upon seeing the little boy. In the hours that passed without the little boy, we never once heard the noise and then as soon as he would see him, it was instant. I swear to you that if we would run into this boy today on the street; Grayson would see him and make the noise. To him this is part of his connection. He remembers the boy and the fun they had playing together and it triggers a memory. A memory that is linked to this sound. There are so many other examples just like this one. Sometimes it is the memory of a person, a place, a TV show a food. Grayson’s memory is unbelievable. Sometimes the hardest moments come from times when Gray is the happiest. In his treatment we refer to these excited bursts of energy in Grayson’s body as feeling “wiggly.” Wiggly is more or less a way of describing the energy inside of Grayson that that needs to get out. It is what causes him to be excited and it is what causes him to have bursts.
• Limited perception of other’s emotions. Sometimes Grayson holds on to past experiences and lets the past outcome dictate the current situation. For example, if a child at Grayson’s school tells him “no” he will associate that student with that negative word. Often walking up to that student and saying “no” for no apparent reason. He holds on to things and experiences and sometimes if inhibits his ability to leave in the moment and have new experiences. This trait is also indicative of Grayson’s inability to correctly perceive other people’s emotions. Sure, a month ago this child may have told Grayson ‘no’, but today the child is trying to initiate play and Grayson is not able to read these social cues and let go of the prior experience. There is nothing more frustrating for a parent than watching your child struggle without being able to intervene. As Grayson gets older and as his communication continues to increase we see him struggle even more with this symptom. You see as children get older it is normal for them to become more and more in tune to the emotional reactions and responses of other people. And, that is happening with Grayson. He seems to have more of an understanding that he has the ability to make people happy or sad or made based on his actions. However, his understanding and concern for this is inconsistent.
• Limited eye contact. This is an area where we spend a lot of time. A part of helping Grayson live within the real social world that is happening around him is to first get him tuned into that world. Sometimes Grayson is so stuck in his head; caught up in his own thoughts and expectations. Grayson will often talk at us without actually talking to us. When we speak with Grayson we ask him to “look into our eyes and tell us.” Sometimes we will need to ask him 3 or 4 times before he actually looks at us in the eyes. Other times he may never look us in the eyes. Sometimes Gray is so wrapped up in his own thought process that he just cannot leave his world and enter the social situation that he is in.
• Impulse. Up above I described Grayson as having an energy coming off of him; and when this energy builds up, it has to find a way out so that Grayson does not burst. Sometimes, when Grayson is happy, this comes out as a screech, jumping up and down, running around in a circle, shaking his body or giving a big hug. And sometimes these behaviors come from a negative energy burst and come out as a growl, a hit, a kick a push or a smothering hug. And then there are times when even the happy bursts come across with a negative gesture. These are the hardest to predict and the hardest to understand. With time we’ve learned to accept that we do not understand the true reason why Grayson gets his energy out the way that he does. And, because we do not understand why he is doing it; it is very hard to understand how we can change it. This symptom more than the others is the one that makes us nervous about peer interactions.

Anxiety. Grayson has a very difficult time making decisions and fully committing to something. I can often tell just by looking at Grayson that he is only partially enjoying something because his head is racing wondering if he made the wrong choice. Or sometimes his limited social abilities keep him on the sidelines of something that we know he would love to do. This happened to us at a birthday party just before Gray’s diagnosis. The party was filled with exciting car rides and a very cool carousal. Grayson stood again the wall wide eyed and smiling. Taking 3 steps forward and then retreating back. After the party all he could do was talk about the car rides, but in the moment he did not actually participate in the activities. This is crazy thing about Autism; you just never know what to expect. On a different day Grayson might have been right in there leading the charge. Sometimes the anxiety is short lived and within moments he can be back in the game and other times we just cannot come back from it.

On top of all of these symptoms; Grayson is crazy smart. Now, I am not a doctor so I am not going to say that his being smart is linked to his autism. However I will say that I think his intelligence and this energy that radiates inside of him are linked. It is almost as if his brain is always turned on, always processing. Even during the years when he was not communicating with us; I always got the sense that Grayson was taking it all in. In fact, before the diagnosis James and I used to joke that one day Grayson would open his mouth and a full sentence would come out. And sometimes today that is kind of what it feels like. When a long sentence comes out he looks at as if he has had that thought in his head for a very long time. It is almost as if he sighs in relief after getting it out.

Loving Grayson means accepting each and everyone one of these symptoms. And believe me, a lot of the time that is much more easily said than done. We have spent a lot of time over the past year learning about Grayson’s symptoms and trying to understand them better. Knowing all that we know now helps us to remember that so many of his behaviors are not in his control. And as a parent, sometimes this is the hardest part to accept. Knowing that there is something happening inside of your child, something that brings them pain and makes them feel confused and excitable and uneasy is sometimes just too much to bear. There are so many moments in a week that I take deep breaths and just try to find the strength to move forward. And then I remember that as hard as it may be to live with someone on the autism spectrum; it will never be as hard as it is for Grayson actually living with Autism. I would like to believe that in our almost 4 years with Grayson we have taught him a lot. We spend a lot of time learning how to help him. How to talk to him. How to redirect him. How to guide him. How to teach him about consequences. How to push him forward. How to let him push himself. How to create boundaries (and when to loosen the boundaries). And all this time that we have been teaching him and helping to propel him forward; he has been teaching us. He has taught me so much about patience and love. He has taught me that our boundaries for love and compassion are so much greater than we think. He has taught me that sometimes things are exactly how they should be; exactly how they were intended to be. Even if they may seem imperfect at times. He has changed what perfect means to me. Because he is perfect. My love for him is perfect. Even though there are a lot of moments in our days when neither of us behave perfectly. These are his symptoms and this is his journey. And I know it will change so many more times as we continue to move forward. And so we will change too. We will navigate the bumps and we will continue to redefine perfect. Our life is perfectly imperfect; but our love for each other will always be perfect.

JS

Ok, so there is this amazing TV show called Parenthood. And, if you have not seen it, then you literally need to stop reading, get your but over to Netflix and binge watch the crap out of this show. I remember the day I first found Parenthood. It was all so innocent really. My husband and I are Netflix and Amazon junkies. We finished up with whatever show we had just devoured and were ready for something new. I spent a few minutes perusing the TV show category and settled on Parenthood. I was a former Gilmore Girls fan so I figured I would give it a shot. It was only about 20 minutes into the first episode when I knew that we stumbled across something that was going to change our lives. Believe me, I know this sounds ridiculous. I completely understand that the idea of a TV show changing someone’s life is absurd. But, it did. In the first episode of the show, we meet Max Braverman. And as the first episode continues, Max’s parents begin to discover that their son is living on the autism spectrum. Parenthood did not hold back. It showed the truly raw emotions that families feel when they are faced with diagnosis. The parents were resistant and full of denial. They were angry and scared. They felt in the dark and full of unanswered questions. They struggled with acceptance. And throughout the course of the show they struggled with many other things; difficult things. I am sure all parents, all people really, related to the emotions of the show. But there was something so raw and so real about the character of Max Braverman that touched my heart.

I will admit here that I can count the number of episodes that did not leave me in a puddle of my own tears on 1 hand. This show was everything that I needed at exactly the time I needed it. I needed to give context to the things in my head. I needed to relate to something that I could see playing out in front of me. I needed validation to the things I worried I should not be thinking, let alone saying out loud. I needed to see how one person’s autism can infiltrate an entire family system. And, I needed to see how wicked awesome amazing Max Braverman would be as he continued to navigate his life. I know…these people are not real. My husband kindly reminded me of that nearly every episode. But to me, the issues that they were discussing, the topics that they were brave enough to cover were incredibly real. Sometimes I felt like they were stealing thoughts from my head. Sometimes I felt like they were giving me the words and the strength to navigate situations that I was facing. And so to me, the Braverman family and the story they told were as true and real as anything else.

There are so many things I love about Max Braverman. He is smart, brilliant really. He is so much smarter than most people. He speaks without a filter and he is not afraid to tell people exactly what he is thinking; not because he is rude, but because he does not know another way. So he says things that seem harsh and extreme, but he is just being honest. Max was un-unnervingly naïve. He wanted to believe that the world was as simple and as good as he saw it. He had so much faith in people. He approached situations without bias. He asked a million questions; about literally every single thing in his path. He needed to understand exactly why and when and where and what. He NEEEDED to know. This part may be hard for you to understand. Kids living on the spectrum do not want to be a nuisance. They are not looking for ways to annoy you. They are purposely asking questions or repeating behaviors or having an emotionally inappropriate response just to rattle you. Everything they do is for a reason; a specific and calculated need. They need things to be a certain way. He needed his mother to spend hours filling the neighborhood with LED candles; because flames made him paranoid. He needed people to give him space and not invade his personal space. He needed people to avoid certain words and triggers so that he could stay on task. He needed to ask enough questions to understand exactly why he was asked or expected to do something. He needed these things like we need air. I cannot explain it to you. But I can tell you that I know this to be true. I live this every day. I can see my son needs something so much that it causes a physical reaction. I can see that he needs things to be a certain way. I can tell you that this is not a small deal to Grayson. He will no “just get over it.” So, if Grayson needs only green cupcakes, or 2 suckers instead of 1, or exactly 2 Matchbox cars to go to bed with him; so be it. If he cannot stand the thought of going to be without socks on, or he cannot let anyone else in the family share his favorite color (green), or he cannot even think of starting a movie at any place other than the beginning, fine. Those things are little. Those things do not matter. He needs them; and so I give them to him. And Max Braverman helped me understand that.

Things I learned from Parenthood:

1. Family will always rise to the occasion. They will see you through the lowest lows and they will celebrate with you at your highest highs. They may not always understand your journey, but they will always travel it with you. I texted my mom and my mother-in-law about 30 minutes into my first episode. I said “WATCH THIS SHOW NOW.” And they did. And just like it gave me a voice; it gave them an understanding. It helped them relate. I can remember saying to my mom “Call me when you get to the camping episode” or “you will understand when you see the urine episode”. My family watched this show because they wanted to relate to me, to Grayson, to what we are going through. They are on this journey with us and they will always be right by our side.
2. Autism only changes what you let it. Living our life without becoming victims of autism is a state of mind. It is a decision that we make every day. I realized early on in the show that it is completely normal to let autism infiltrate your entire existence…for a while. And then after a while it is time to take back control. This process is incredibly difficult. And, I often feel like we are doing it with such a very small (or non-existent) amount of grace. The Braverman’s, like us, were overcome with their diagnosis. It became who they were. It defined them. And then, one day they decided not to let it. And then it did not define them anymore. It was always a part of their journey, but it became a much smaller piece of their family puzzle.
3. Sometimes people suck. The urine episode. It is hard for me to explain just how this made me feel as a mom; more importantly as Grayson’s mom. I know you may not have seen the show, so let me just say this; when a family receives an autism diagnosis it is normal to think about all of the ways that your life will be effected, not just in that moment but for years to come. We have fears about the future that are sometimes to terrifying to put into words. In this episode a group of kids does something to Max that is despicable. And, they do it because Max is different. That part is even more despicable. In the secret compartments of my heart…in the deepest pockets of my brain; these are the fears that keep my up at night. No one wants to imagine a future for their child that is difficult and full of pain. But when you are the parent of a child with special needs, this is a part of the journey. I watched this episode completely drenched in my own tears. In this episode the mother is in the front of the car as her son recounts to her what happened. As the son acknowledges that people think he is a freak. And she sits in the front of the car silently sobbing. It is a moment that she thought about and dreaded and prayed would never come. And when it came, all she could do was cry. And I cried along with her. Sometimes people suck. Sometimes they do something terrible. If you are parent, teach your children to be kind. To accept and understand difference. Do this because it is the right thing to do. Do this because you have no idea how difficult this journey is. Teach your children to be wiser. To love more. To judge less.
4. “Freak” is relative. Max Braverman is obsessed with insects. Sure, insects are kind of creepy and maybe not for everyone. But he loves them, and they make him happy. And this does not make him a freak. He is interested in something. He cares enough about something to study it; to learn more about it. He shares it with his friends. Bugs are his thing; and having a thing makes Max feel happy. Grayson has a lot of “things”. The latest obsession is match box cars. I have to remind myself daily that there are WAY crazier things that he could be obsessed with. Sure, at the end of a long day the last thing I want to do is pick up 40 cars from the ground (again) just to have them tossed back out of the bag at sun rise. Sure, it is annoying when he calls me into his room 5 times at night because he’s dropped (again) one of the 2 cars he is allowed to take to bed. Sure, sometimes it is a battle explaining to him exactly why he cannot take 40 cars with him everywhere that he goes. But, he loves cars. And cars make him happy. I love that he loves something so much that it excited him. People may do thing or collect things that we do not understand; this does not make them a freak.
5. Autism is not a life sentence. In the beginning it feels like all of the walls will cave in. As if at some point your tombstone will read “Autism swallowed her whole.” The biggest gift the show gave me was an understanding that autism is as fluid as anything else in life. It ebbs and flows. In the beginning of the show, you can see that the members of the family often feel resentful towards Max. Now, what I mean is that they feel resentful towards the autism, but when you are living through this it is really hard to differentiate. James and I experience this all of the time. We will say “sometimes I just get so frustrated with him; and then I remember it is not him…it is the autism.” This is a huge piece of understanding how to move forward. By the end of the show I think that every member of the family would say to you that the symptoms of Max’s autism are some of the things that made him so special and unique. And without those things; Max would not have been Max. You have to be able to forgive the autism. You cannot stay bitter and angry forever. Autism is a life diagnosis, but it does not have to be a life sentence.

Since we binge-watched Parenthood; the whole 6 seasons only lasted about a month. (I swear, if it were not for my job, family, house, need for sleep, and general life responsibilities I would have watched the entire 6 seasons in a week!) As we prepared to watch the final episode I told my husband that I was not sure if I was emotionally prepared for the show to end. I needed to see Max grow up. I needed to seem him graduate high school and go on a date. I needed to know what his life held in store for him. I needed to see how his mom found the courage to let him spread his wings. How after years of arranging every moment of his care and treatment; she let go. I needed to see that they could survive autism. That they were not only surviving but that they were better for having lived through it. I thought that I needed all of these things to help me on my own journey. I thought it could somehow be a beacon to guide me. But, when it was all over I realized something important…this show helped me find my voice. It made me brave. It gave me hope. Sometimes it scared the shit out of me, but I needed that part too.

I love Max Braverman. I love that in 2009 someone was brave enough to create that character. To let him live through real experiences. To show his parents struggling to get by day to day. To show his sister loving him and hating him all at the same time. To show his extended family unsure what to say or do in the wake of Max’s symptoms. I love Max Baverman and I am so thankful for him. I feel like he will help makes this world a safer place for Grayson. This show gave a voice and a face to autism in a hugely publicly way on a hugely ginormous scale. I can use this show to help Grayson be stronger. To be a braver man.

JS

This week my Grayson was the “STAR OF THE WEEK” at his Montessori school. The star of the week gets to bring in pictures of themselves and their family. They answer questions about all of their favorite things. The star of the week gets a basket to bring home to fill with toys and books to show and tell to their classmates. When Grayson came home last week with the basket and the list of questions I was equal parts excited and nervous. You see, I imagine in most houses the parents receive the basket and ask their child to tell them what they would like to share with the class. And then the parents ask the child the list of questions and write down the answers. The parents may ask the child a few times throughout the week about their show and tell to help them prepare. They ask the questions and the child recites the answers. They pack the basket and send the child off to school. The child stands in front of the class and shares their toys and the information about their favorite things. Because by age 4 this type of communication is basis; it is ordinary for most children. Most children can tell their parents about their day. Most children can answer simple questions about their friends and about their family. Most children are able to communicate the things that they like and the things that they do not like. Most parents know what their 4 year old is thinking; because their 4 year old can tell them. Grayson struggles to tell us even basic things about his day. Sometimes we can look at him and see the frustration in his face. Frustration over not having the right words. Frustration over not being able to tell us what he needs or wants. Frustration for not having a voice; his voice. And so he works hard, harder than any child should have to work to do things as simple as communicate his needs and wants. Let me tell you a little bit about our “star of the week” and just how hard he works every single day…

On a Monday we received the basket and list of questions to be used the following Monday. My husband sent me a text message in the morning. I was instantly excited for Grayson; for this opportunity to see just how far he has come this year. I was also incredibly nervous; the kind of nervousness that has become second nature when we think about Grayson out in the world without us. Out in the world where we cannot help him; where we cannot control the environment. Nervousness in my desire for him to express himself; to share his toys, and a piece of himself, with his classmates. Grayson is such a passionate and expressive person and I was thrilled at the idea that he could share some of that in a special way with his class. You see just that morning at school drop off Grayson asked my husband if he could take his cars to school with him. Cars are the flavor of the month at our house. Which is fitting; since the car obsession started about 2 weeks after I sent out Grayson’s outer space themed birthday invitations. Outer space was last month’s obsession. For two weeks he has taken cars everywhere he goes. We keep the cars in a container and we try to introduce a little bit of self-control; sometimes limiting the number of cars he can take certain places. At home he can have all of the cars; but not during therapy. He can take 2 cars to bed with him, he can take 5 cars to the table with him. And, last Monday Grayson looked at my husband with his big brown eyes and said “cars, school?” Daddy reacted quickly and told Grayson that “no, we cannot have any cars at school, those are the rules.” Grayson accepted this answer without argument. In fact, he walked into the school and promptly told his teacher “no cars at school”.  So, I just knew that Grayson would be beyond thrilled to take his cars to school. I knew that if I asked him what he wanted to take to school to show his friends, he would not come up with an answer on his own. Even though he knows his favorite things, these types of questions are difficult to Grayson to answer. You see, that is not how Grayson communicates with us. We ask Grayson questions all of the time: “How was your day?” “What did you do at school?”, “What do you want to do today?” We ask these questions because we know in our hearts that one day we will get there. One day he will be able to answer these very broad open-ended questions, but we are not there yet. Instead we break the questions down to focus on smaller topics: “What should we do first; play outside or play a game?”, “Should we wear blue shoes or red shoes?”, “What are your friends’ names?” (to which he answers names of his classmates, names of his therapists, and sometimes in the most precious moments he answers “Rowan”; which melts our hearts into a million pieces). We ask him yes or no questions. Do you like cars? Do you want to go outside? Do you want a snack? Grayson answers the question asked in simple short answers. He does not expand. He does not elaborate. So, we build on the simple questions. We help him find a voice; one simple, direct question at a time.

So after I received the list of questions I did something that is very normal in our life; I reached out to our team. I emailed our case manager and our speech pathologist. I told them about Grayson’s “star of the week” presentation. I sent them the list of the questions. And, we made a plan; as we always do. We planned out how to talk to Grayson about the basket. How to help him fill it with the things that he loves. We spoke about the questions and the best way to help Grayson deliver the answers. Over the next week we would help Grayson prepare. That Tuesday night we had a late therapy session in the home; a session that usually contains a lot of interactive family time. During this session we brought out a solar system “do it yourself” model kit. The box said Age 7, so we were not sure what to expect, but we gave it a whirl. We turned it into a game. Grayson selected the color for each planet. And, while I painted the tops he copied me and painted the bottoms. He was so excited to see the planets together that we knew we could not wait for the paint to dry on its own. So, we busted out the blow dryer. He could not contain his excitement! He stood next to me covering his ears (loud noises like blow dryers effect Grayson) and bouncing up and down while I dried each planet. And then when they were dry we sat down at the table and worked together to assemble the solar system. Grayson matched the tops and bottoms and daddy helped place them on the solar system.  And when it was done Grayson had the biggest smile plastered across his face. He made his very own solar system! He could hold it and touch it and he loved it! That night the solar system went everywhere Grayson went. It sat on the toilet while he took a bath. It sat on the bookshelf while he watched his show. And it sat on his nightstand until it was time to turn the lights out and go to bed. The Solar System was a no brainier; it was definitely going into the basket.

The next night we worked on the answers to the questions. “What is your favorite color?” Green. “What is your favorite food?” Pizza. “What is your favorite toy?” Planets (go figure, after my anticipated car excitement)! “Who is in your family?” Mom, Dad & Rowan. “How old are you?” 3.

On Wednesday night we filled the basket with Grayson’s favorite things: the solar system model, some of his cars, his batman action figurine and his favorite book “Trains Go”. During the day on Thursday he worked with his technician and his speech therapist to prepare for the presentation. They did a mock run through and videotaped him so that he could watch himself. Grayson loves to watch videos of himself (as if anyone who knows me is even the slightest bit surprised by this). The technician who would accompany Grayson to school for his presentation also came to our house on Saturday and they did another run through of the presentation. He was excited and he was ready! We talked so much about our “star of the week” and told him that he would be amazing. On Saturday I had to leave town on business. I was so sad to miss my little star of the week. To miss the look on his face as he prepared his basket and headed off to school on Monday morning. As a working momma we miss so many little and big moments. And, it never gets easier. I hated to leave, but I knew that my little man would be amazing. So I gave him the biggest kiss and told him that he was always momma’s star of the week.

My husband and our team recounted the day of Grayson’s presentation with so much joy in their hearts! He woke up that morning so excited. He wore his “earth” t-shirt and packed up his basket. He chatted James’ ear off as they drove to school; smile plastered from ear to ear. I asked James to snap a picture of Grayson and his basket; however when Grayson walked in with the basket he was swarmed by his friends. He stood by as his friends came to the basket to see all of his things. He was so truly and genuinely happy. He answered all of the questions as he shared his toys and pictures with his class. His presentation was perfect…truly the star of the week.

You see in our house; Gray is the star of a lot of weeks. He works his little butt off. He does more in a day that should be expected of any almost 4 year old. He tries and struggles and pushes himself. He succeeds and he fails. He keeps his cool and he totally losses it. He is happy and focused sometimes and other times he is grumpy and distracted. But each day; he works so incredibly hard to be better. A better communicator. A better brother. A better friend. A better version of himself. Better and calmer and more patient and more focused. He is truly a star in so many ways.  He brings light everywhere he goes. He is always shining; always guiding our way. He reminds us that some things change and other things stay the same. Grayson teaches me that sometimes when things stay the same it is to keep us grounded; to remind us who we are and where we have been. There are certainly things about our journey I would change, but there are so many things that I would not. I look at Grayson at the end of most days with awe. I wonder just how is able to do everything we ask of him. I cannot help but think about the childhood I imagined for Grayson for the nine months that I carried him inside of me. Days filled with adventures inside and out; exploring and pretending and creating. My vision of his childhood did not include 25 hours a week of behavior therapy. Or, 3 hours a week of speech therapy. My vision did not include structured and monitored family play time. It did not include regimented and scripted brother play time. My vision was simple and carefree. And in my vision; Grayson was happy. When I look at our life today I realize that our life is many things I never imagined it would be. It is structured and scheduled and often not even the slightest “carefree”. But, it is also happy. It is filled with such an enormous amount of love. A love that I did not even know I was capable. And so maybe our journey is different than we expected, but as long as it is filled with love then I know that we are exactly where we are supposed to be, doing exactly what we are supposed to be doing. I love my little star of the week. And, I thank God for him every day.

JS

Gray’s display at school

Gray’s solar system

Gray’s basket of goodies!

In so many moments of so many days I let my mind wander to a different time. A time that was less complicated. A time that was not filled with so many schedules. A time without a revolving door at the front of my house. A time when I was just a parent; and Grayson was just a kid. I think back to the months just after he was born. A time filled with so many new things: first smiles, first foods, first laughs, first roll-overs. Every moment of life was so filled with joy; so full of love. I saw Grayson’s whole life before me. I knew that he would be loved. I knew that his life would be happy and full. I felt blessed to go along on the journey with him; to guide him and love him and support him. I saw his whole life; and I saw mine too. I was Grayson’s mommy. I would go where he would go. I would go where he needed me to go. And so, we went.

Talking about autism in the “what-if” sense was terrifying. And for the entire year that Grayson was 2 this is exactly what we were doing. What if? What if it was? What if it wasn’t? In the months leading up to our appointment at the diagnostic center I seemed to grow more and more un-nerved with each passing day. I became hyper-aware of all of the little moments in the course of a day when Grayson would struggle through his speech. At times I even felt like he was losing words that I was certain he had previously mastered. I got in the habit of recording a list of his words at the time he began using them. I would reference back to that list to make sure he was not losing words. I remember asking (actually, pleading with desperation) to our pediatrician if the 26 letters and numbers 1 through 20 counted as words; they did not.  You see, that was one of the confusing things about Grayson’s development (and it continues to be today.) His speech and his intelligence are on 2 completely different levels. He could recite the alphabet and identify letters on flash cards by the time he was 18 months. He regularly counted to 20. His favorite number was 18 and his favorite letter was X. He knew that “M was for Momma” and “D was for Dada.” He mastered his shape games and puzzles with ease. He was so incredibly smart. He was so smart and yet he struggled to ask us for even his most basic needs. As a parent it is so difficult to watch your child struggling to communicate with you. Struggling to let you know what he needs. Struggling to find his words; his voice.

And so we counted down the days. We waited in anticipation. We waited in total fear. And while we waited we went on living. We went on with our day to day activities. Because even though it felt like something big was about to happen; our life was the same that it had been before. In the months that we were on the waitlist we tried so many different techniques proven to help kids with speech delays and behavioral issues. We started using essential oils on Grayson. We started eating clean. Well, that’s a total lie…Grayson started eating clean. James and I secretly devoured delicious un-clean foods behind the closed pantry door. Helping a two year old to eat clean is no easy task. Birthday parties were a nightmare. School snacks were terrible too. But, we stayed the course and tried to commit as much as possible. We followed the instructions to stop using gestures with Grayson. We regularly worked on word development. We sang songs and played with flash cards. We simplified our own speech to help him. We were doing our best to move forward and to make improvements.

And after 10 months of waitlists and pre-appointment check-ups it was time for us to head to Iowa for the diagnostic testing. They told us to expect a full day of testing. We decided that it was important that the testing day  be about Grayson. We decided to leave Rowan at home so that we could focus all of our attention on Grayson. After all, we knew that keeping one child happy and contained at a hospital for seven hours would be no simple task. And so we packed our bags and made our way to Iowa.  We stayed in Iowa the night before the test so that we could arrive rested by 8am. Except, none of us were rested. Grayson was out of his normal environment and because of that he was off of his typical schedule. James and I spent most of the night before lying awake; a million questions racing through our heads. It was very quiet in the car as we made our way towards the hospital. After month of talking and predicting and explaining and hypothesizing….we were left with only silence. Because no matter how much we predicted or explained or hypothesized; at the end of the day we would have the answer.

We were greeted by an incredibly friendly team of therapists and psychologists. They were patient and gracious as we navigated through the early morning. The day started with the ASOS test. This test is used to examine the markers of autism by simulating a variety of social situations and interactions. During this test they asked for one parent to accompany Grayson into the room and for the other parent to watch from the conference room. Anyone who knows me is expecting that I quickly raced to Grayson’s side to join him in the testing room. Except, that is not what happened. It was such a difficult decision to make. But my “mother” role had evolved so much over the past year of check-ups and therapy. I knew that the best place for me was in the conference room with the people who could explain to me exactly what was happening. Where my questions could be answered without distracting the process. I wanted to be with Grayson; more than anything I wanted to sit next to him and be the familiar face he looked to throughout the test. But, I knew that my true place as his is mother is where I could most help us get the answers we needed to move forward.

I was incredibly fortunate to be surrounded by my ally. Afterall, it was her connection that got us into the hospital so quickly. I knew that she would explain to me everything as it unfolded. As Grayson and James got settled into the testing room I watched on from the TV screen in the conference room. What a surreal experience. Surrounded by medical professionals and my best friend I watched my child on a TV screen as he played just a few rooms away. Just moments before the test began Grayson asked for an apple. The team hoped to save the snacks to help keep the session moving when Grayson grew uninterested. When Grayson learned that he could not have his apple he started screaming; and his other behaviors quickly followed. As I watched it all unfold I turned to my friend and said in a very quiet and still voice “we are leaving here with an autism diagnosis, aren’t we?” I cannot explain exactly what I felt in that moment. Maybe it was finally being at the test after so much waiting. Maybe it was the reality of the situation. Maybe it was taking a step back and watching Grayson in a way I had not done at home. Maybe it was my fear. Maybe it was my nervousness. Or, maybe it was my mother’s instincts. My friend looked me square in the eyes and said “It is going to be a very long day Jess, let’s not get ahead of ourselves.”

So we moved through the rest of the day. Grayson was asked to simulate a birthday party experience with a baby doll and candles. I smiled as he shoved the dolly’s face next to the cake and said “blow baby”. I felt so happy that he understood what they were asking him to do and that he was doing it in his own, Grayson way. Throughout the day they gave us lots of breaks. Time to catch our breath. Time to keep pumping the coffee in. Time to wonder. Time to worry. Time to buy our sweet big boy a yellow smiley face balloon. After the ASOS test Grayson moved into the language evaluation. This was the 3^rd time in a year that Grayson went through a speech evaluation. It is tough to sit with a two year old for an hour and get a full-picture of his speech abilities; so at the end of Grayson’s evaluation she met with James and I and we filled in some of the missing pieces. Next James and I were interviewed by the psychologist. We spoke about our routines, our family dynamics, our jobs, our schedules, our care providers. We were asked about Grayson’s hobbies and his habits. We gave examples of behaviors and actions. It is amazing just how much emotion you can remove from something that it incredibly emotional to you. This was not the time to be sad or reflect on our areas of improvement. This was the time for facts. And so we went on for over an hour providing her with the facts from our life. When she finished with us she spent time on the phone with Grayson’s Montessori teacher. She asked her many of the same questions about Grayson behaviors and social interactions. The team evaluated notes from Grayson’s Birth to 3 team. They evaluated the hearing tests and the previous speech tests. In front of them sat an entire file of information about my son. Information that would unlock the answer to a question. A question that even in that moment I was not sure I was ready to have answered.

We took an hour break after the testing was completed. And then the phone rang and they told us that they were ready for us to come back. We went back into the conference room where I started my day. I could not help but look around and think about how just a few short hours ago I sat in the same room while we began the day. Grayson had reached his “sitting still” quota for the day. So while we sat at the table he ran and jumped and played around us. As we listened to the words of the doctors and therapists we could hear his giggle. We heard him trying to get our attention to look at his balloon. We heard the sound of him hitting the balloon. We heard the sound of him spinning in the chair. We heard his little voice say “mama look, daddy look.” And then all of the sudden the only thing we heard was the sound of someone saying “we are all in support of a diagnosis of autism spectrum disorder.”

In the moment after that I did not hear anything. For just a few moments it felt as if the world stopped spinning. I was overcome with such a rush of emotions. It was like the moment I first heard the word autism; except so much more extreme. Because then my child just “might” have had autism; and there in that moment there was no “might” about it. I knew that all of the faces around the table were waiting for me to ask questions. They were waiting for me to have a reaction. I knew that my heart was crying and my brain was spinning. I knew that nothing I asked in that moment was going to bring me clarity. God bless my friend for sitting next to me and being my voice. She asked all of the right questions about where he was on the spectrum, what prognosis, treatment, etc. She asked the questions and my eyes wandered from face to face trying to process the answers. And then I just knew; we were tired and sad and confused and it was time to go home. So they handed us a folder with contacts for the next steps. They shook our hands and gave Grayson a high five and we walked out of the office. We walked from the office to our car. I buckled my little man into his seat and gave him his milk. Without speaking my husband and I got into the car. We turned the radio off and we drove in silence. About an hour into the drive I turned back to find Grayson asleep in his seat. I turned to my husband and it was then when he looked back at me that I finally burst into tears. I let myself cry for a while. I did not want to talk about it. I did not want to promise each other that it would all be ok. I let my brain rest. I let my heart hear. And I just cried.  And after I had cried for a while, I picked up my phone and prepared a message to send to our friends and family. I found the words and the strength to tell the people closest to us that my son had just been diagnosed with autism. And then, in that moment, it was real.

JS

It is always difficult to hear hard things. It is even more difficult to hear hard things when you are not emotionally prepared. Some of you may have been expecting the A-word part 2 as my next entry. But, I feel like there is something important to say before I go any further into our diagnosis. Our journey with Grayson started for a number of reasons. It started because of our parental instincts. It started because of our awareness of Grayson’s same-aged peers in our lives. It started because we understood the milestones; and we understood that he was not hitting them. But, if I really pinpointed the “start” of our journey; it all comes back to one phone call. One very difficult phone call with my lifelong friend.

As parents we are innately protective of our children. It is part of the job. It is our job to love them, nurture them, guide them and push them forward. It is our job to pick them up when they fall. It is our job to make sure that they learn manners. That they learn to be kind and patient and compassionate. It is our job to teach them the difference between right or wrong. To show them the way when they are lost. It is also our job to be observant. To look for areas of opportunity to teach and coach and mentor our children. It is our job because we are their parents. And, it is a job that we take very seriously. But, we do not see it as our job; it becomes our purpose, our way of existing. We do our best every single day to raise our children to be people we are proud of. And we love them at every turn; no matter what.

I have already told you that I believe whole heartedly that it takes a village to raise a child. And, believe me when I tell you that I could not imagine the parenting gig without the love and support and guidance of the amazing people in our lives. As parents, we count on the love and support of other people to navigate new and unfamiliar territory. But, there is a mutual understanding that we are the parents; and they are the support system. It is important that we understand that. That we respect the role of the parents. That means sometimes we keep our opinions to ourselves. Sometimes we do not say the “obvious” thing because it may not be the “right” thing. Sometimes we bite our tongue. Sometimes we turn a blind eye. Sometimes we put our instincts aside; because we know that we are not the parents. And, because we know the parents, love the parents; we know that they are doing their best and will figure it out with time. And then there are times, even though we know the risks, even though we know it may not be the right thing…we say something.

Let me just say here…this is an incredibly risky thing to do. Telling another parent something difficult about their child is no easy task. All parents want to save face in public; no matter how much they may be struggling at home. And when we realize that someone sees beyond the act, beyond the front, that is really difficult to swallow. But sometimes, in the right circumstance and with the right friendship, sometimes you have to hear something hard about your child. Something you did not see. Or, something you saw and just did not know how to explain. Sometimes you need a friend, willing to go out on a limb to help you along. A friendship so true and so precious in your life that they are willing to risk it all to help. To help you down a path you did not even know you were on. To help you move forward. To help you fall apart. To help you as you put the pieces back together; one by one.

I’ve told you already that we noticed Grayson had a speech delay. At 18 months he was not developing speech skills like his same-aged peers. And, as he inched closer and closer to 2 years old, we knew something was off. But, we had a 2 month baby at home. I was on maternity leave. James was starting a new job. And, we were doing the best we could. We were working hard with Grayson to grow his vocabulary. We were making special time for Grayson during the day; time that was just about him. And, we were noticing that some days things were improving. And some days, things were worse.

One day I was having an exceptional “momma of 2” moment…dinner was in the oven, Grayson was playing with his blocks and Rowan was asleep in his swing. I decided to do what any mother would do in such a moment of peace; clean the house. So I pulled out my dusting rag and got to cleaning. After a few minutes, with 2 kids both still cooperating, I decided to take the opportunity to catch up with a good friend on the phone. We spent several moments on the phone talking about life. Sharing the gory details of parenting 2 children under 2. Sharing the details of the schedules, the feedings, the sleeping (or lack thereof). It was a real grown-up conversation; and it was happening while I was home alone with both kids. I was feeling like and extra-special form of momma rock star in that moment. And then all of the sudden Grayson was standing at my heels struggling to communicate with me. He was pointing and talking in his gibberish way; intermixing screams to reiterate the point I was not grasping. I apologized to my girlfriend and set the phone down to communicate with Grayson and try to better understand his need. After a few short moments I determined that Grayson was asking for a toy that was out of his reach. Armed with his toy he went on to play happily and I picked the phone back up. In the next few moments we had a conversation that I reflect back on all of the time. I remember it so clearly. This particular friend is someone I had known for nearly 2 decades. We saw each other through grade school, high school, college (even a stint as roommates), weddings and early motherhood. She is also a brilliant Speech and Language Pathologist. She has spent years working with children. She sat beside me in college during a rehabilitation psychology class focusing on behavior change in children. She is someone that I respect so much as a friend, as a professional and as a mother.  And so we entered into uncharted and very delicate territory.

She very gently asked me if she could ask me a few questions about Grayson’s speech. She said “I am so sorry if I am over-stepping and if I am you can just tell me to shut up.” I told her “of course” she could ask me. She asked me about the screaming. She asked me about gestures and non-verbal communication tendencies. She asked me about word counts. She asked me about his behaviors and if he grew frustrated when we could not understand him. She told me things about her own child’s speech. About how not everything always happens exactly on cue. She told me that every child is different and that Grayson was lucky to have such patient parents. And then she told me that she thought it couldn’t hurt to talk about the speech delay at Grayson’s 2 year well baby check in a few weeks. She suggested that we track the words he was using. She also asked me to pay more attention to his non-verbal communication and make notes of things that stood out. She said that it sounded like Grayson was struggling to communicate with us and we might be able to see a big improvement if we were able to utilize speech therapy. She made a point to tell me SO many times that James and I were great parents. She was gentle and kind and she understood that what she was saying was hard to hear.

You see, I already knew that Grayson’s speech was delayed. But somehow hearing her say it out loud kicked my momma butt into gear. Somehow knowing that other people recognized his delay made it different. Speech would have come up at his 2 year checkup regardless of this conversation. Our pediatrician would have recognized the delay and she still would have referred us to birth to 3. The real difference after my friend was brave enough to “go there”, was that all of the sudden I had an ally! There was someone outside of the walls of our everyday life that knew our struggle. Someone who could relate and understand what we were going through. James and I were no longer going through it blindly alone. We had support. Someone knew our struggle and I actually felt better for having it out there.

I interject this story in between the 2 A-word blogs because this person continues to be my ally throughout our journey. In fact, she sat next to me as we received Grayson’s official diagnosis. So, telling our story without acknowledging her substantial role, from beginning to end, just does not seem right. And just to be clear, the point of this story is not to have all of your run out into the world to start diagnosing your friend’s children. Actually, please, DO NOT DO THAT! The point of this story is simple; sometimes people need things from you that they do not know how to ask for. Sometimes people need things from you that they do not even know they need. And when you see a friend in need; help in any way that you can. And, if you need to help them through something difficult; do it with grace and kindness. Do it with only good intentions. Do it delicately. Do it in a way that is free of judgment. Free of comparison. Free of hopelessness. Be what your friend needs of you. Do not take lightly the act of stepping into someone’s personal space. Understand that they may not want you there. Understand that they may ask you to leave. And if they do, respect their request.

I learned that sometimes your friends are the mirrors you need to see. They allow you to look into them to see something that has been inside of you the whole time. The help you take down the walls you’ve built. They love you without condition and without judgement. They only want the best for you. And sometimes, even if you do not like what they have to say, you need to hear it. You need to see it.

I am thankful to my friend every day. I thank God for her. I wonder how I will ever be able to repay her for her help on this journey, for setting me free, for holding me up. For giving speech to my speechlessness. For giving hope to my hopelessness. For all of these things and so many more. I am thankful to my friend every day. I think back to that day, that phone call, often. I wonder how different our journey may have been without her by our side. And I realize just how thankful I am that she was brave enough to help us. It is so much easier going through life with friends who are willing to be there for you; no matter what. And so with my husband and my friend by my side; we pushed forward. We went on to face a day that would change our lives forever.

JS

I remember the first time that someone used the word “autism” in reference to Grayson. I remember it so clearly because it felt like I took a bullet to the heart. It was months before our actual diagnosis. Months before we knew just how long and crazy and complicated and ever-changing our journey would be. It was said so casually. So easy. Like “hmm, may it is autism.” Or a common cold, or allergies or maybe he was just 2. It was said in one instant and then it was quiet. Everything was quiet. Except, the people in the room around me were still talking. I just could not hear their words. My head was swirling with a million thoughts. Thoughts about life, thoughts about the future. Thoughts about the life I imagined for Grayson. For me. And the longer my head swirled the longer I existed in the silence. Watching the mouths of the people around me move. Knowing that there words were important. Knowing that they were probably explaining away their use of the word. Worst case. Not even something that should be on our radar. Except, it was. In that moment autism was not only on my radar… it was the only thing I could think about. It felt impossible; and completely possible all at the same time. It felt like it did not fit at all; and like it fit perfectly, too perfectly. It felt like an out-of-body experience. Except it was me, in my body, hearing words that you never imagine hearing as a mother. In that moment the parenting gig took a hard turn towards reality. Life was about to be real in way that I had not prepared myself for.

It was a pretty normal day. I was working from home so that I could meet with Grayson’s team. Back then our team was pretty different than it is today. By age 2 we noticed that Grayson’s speech was pretty significantly behind the speech of his same-aged peers. We had heard everything from “he will grow out of it”, “everyone hits milestones differently”, “maybe he just is not a talker” (this one really made me laugh. I mean after all….he was my child. This was most certainly not the case.) And so I gave our pediatrician a heads up that I wanted to talk about some delays at Grayson next well-baby check. Just a month later at Grayson’s 2^nd year appointment our pediatrician agreed that there may be more to the speech delay. She made a referral for us to our county’s Birth to 3 program. For those of you who are not familiar; Birth to 3 is a program provided by the county to help families gain access to early detection and in-turn to early intervention. The program requires a referral from a pediatrician and then a home visit for evaluation. And so we were referred and evaluated; the first of many evaluations that we would meet along our journey. And, it was determined that Grayson would receive weekly support for speech and behavioral development.

Each week the therapists came to the house and provided 45 minutes of service. Speech and behavior therapy with a two-year-old is actually pretty fascinating to watch. Because two-year-olds really do not do anything for any substantial amount of time. Back then life was moving from one 20 second activity to another. So the therapists would come in and follow him around 20 second stint at a time. They worked on speech. They introduced sign language. They tried little and big strategies to kick start Grayson’s speech. We recognized the effect of Grayson’s speech delay on his behaviors. We knew that if the speech did not come together soon that the behaviors would only continue to get worse. So, we invited these almost-strangers into our house to spend 45 minutes a week with our two-year-old. And, once a month we met as a team to discuss his progress. It was during one of these monthly meetings that it happened. The day the “a-word” was first dropped into our lives.

I was sitting on the floor interacting with Grayson (and holding my 4 month old baby). We were casually talking about our strategies. Casually talking about Grayson’s changes and progressions. Causally talking about all of the things that could be “primary”. See, when your two year old has a significant speech delay it is important to determine if the speech delay is primary or secondary. If it is primary then you hope that with time, and socialization, that speech will gradually get on track. If the speech delay is secondary to something else; then you will never truly understand the speech delay until you find the primary cause. This was a pretty typical topic of conversation during the meetings. We talked about his obsessive tendencies and said “maybe it is some early version of OCD”. We talked about his sensitivity to sound and touch and wondered if maybe it was some sensory issue. And then on this day, for the first time, our therapist very casually added “you know, I just cannot decide if I think it is autism or not.”

Autism? As in Austim Autism? Like, Autism?

And so I was silent, for much longer than was socially acceptable. As my head filled with questions and thoughts and fears my eyes raced between our two therapists. And then from somewhere inside I found the words…”I’m sorry, did you say Autism?” She realized in that instant she was telling me something I did not know. I think when someone says the thing that other people have been thinking all along there is a shared understanding. Kind of an unspoken “ok good, so we finally said it out loud.” Except this time, that was not the case. This time, she was saying something that I was not prepared to hear. She said something that I had never even imagined being a part of what we were going through. And yet, she had said it.

She recovered quickly; although I cannot say that there was anything gracious about it. Because, how can you graciously tell parents that you think their child might be on the autism spectrum? She told me that the team often pondered about autism symptoms, but that they had a lot of reasons to believe that it was not autism. Grayson is incredibly affectionate; he always has been. He makes deep connections with people; even people who he has not known for a long time. He craves social interactions. He is silly and funny and sarcastic. For all of these reasons and more; they were very hesitant to use the word. And so, we casually ended the conversation.

I spent the next few weeks trying to learn as much as I could about autism. And the topic continued to come up with our team. James and I decided that for our own peace of mind it would be best to make an appointment for an evaluation at a diagnostic facility. And so the process began. We were going to know in no uncertain terms whether or not Grayson was on the autism spectrum. It does not get more real than that. And so we were referred to the Waisman Center in Madison. In order to be referred Grayson had to have 2 hearing evaluations as well as another check-up and referral from the pediatrician. He thought the hearing test was silly; he had no idea just how un-funny it was. There were no problems with his hearing; confirming that hearing was not the primary concern. Our road to the test was a little complicated. We spent 2 months on the wait list for the Waisman Center; the waiting list to get put on the waiting list. They were under-staffed due to turnover and there was no end in sight. As each day passed Grayson came closer to age 3. And, at age 3 he would no longer be eligible for services through birth to 3. And so as each day passed we felt more unsettled. In many moments of desperation I reached out to a lifelong friend who had been such an amazing comfort during our journey. It is amazing to have friends that hold you up and push you forward. It is even MORE amazing when these people have awesome connections. This particular friends was a very well-known and respected SLP (Speech and Language Pathologist). And, within hours we were scheduled for an appointment in 3 weeks in Iowa.

I called this post “part one” because as you can tell our diagnosis journey was not short. I think the events of the day that we spent at the diagnostic center are important. They are a huge part of our story. And so, I will finish the story in another post. The story to this point captures a few things that are so important to mention:

1. Early Detection….it is honestly the thing that I thank God for every night. I am thankful that even as first time parents we listened to our instincts. I am thankful that we had people in our lives who helped us see the things that were difficult to see.
2. Early Intervention….we know so much about Autism today; and we know that when introduced correctly and early interventions help people living on the spectrum to live fully integrated, happy lives.
3. When the right thing isn’t the easy thing….there are a million moments I would have loved to turn a blind eye and pretend not to see the things right in front of me. But I could not pretend this away. I could not derail this journey we were on. This is our journey because it was meant to be. And so we had to see what was in front of us; even though it was not easy to do.

Today I will take Rowan for his 2^nd year check-up. And, I cannot help but reflect on how different I feel today than I did just 2 years ago with Grayson. I went to Grayson’s appointment filled with fear and questions and worry. I went to Grayson’s appointment feeling like we were getting it all wrong. I went to that appointment knowing that there was something in front of me that I just couldn’t see. Something that my son was trying to tell me. Something that seems so clear to me now. Rowan is a very typical 2 year old. In our house, the word typical has a big meaning. You see, typical does not just mean that he is walking and talking and hitting all of those normal milestones. In our house typical means that he is not showing signs and symptoms of autism. Did you know that the chances of parents having a subsequent child with autism are as high as 18%? You see, I was pregnant with Rowan by the time we began to see Grayson’s struggles. And Rowan was nearly 1 year old at the time we received Grayson’s official diagnosis. Can you imagine as a parent just how much that 18% scared the crap out of me? And so, when I say that Rowan is typical I mean a lot of things. I mean that he is walking and running and jumping and climbing. I mean that he is talking up a storm. He is talking and signing and telling stories and always telling us “thanks much.” I mean that he is tuned into the emotions of other people. He understands happy and sad and angry. He understands how to make someone feel better when they are crying. He says I love you. He throws epic tantrums. He changes his mind on a dime, because he can. He is 2. He is 2 in every sense of the word. And he is typical; in every sense of the word.

And so today we will go to his 2 year appointment. We will talk about his milestones. We will talk about his gentle and sweet demeanor. We will talk about all of the things that are relevant for typical 2 year olds. He is typical. And Grayson is not. And today that becomes truer than before. Because today is the first milestone that Rowan will pass on track that Grayson did not.

JS

People always ask us just how we do it. How do we get through moments that scare the crap of us? How do we take steps forward when we really want to run away? How do we face things head on when we want to duck for cover? How we push forward? How we have faith? How we keep going? Keep living? The answer is hope; and a heck of a lot of support. Sometimes I take deep breathes to clear my mind. Sometimes I cry. Sometimes I work out. Sometimes I completely fall apart. Sometimes I rise above. But all of the time; it is the love and support of other people that push me through.

Too many times to count I find myself in the kitchen after the kids are in bed sighing a big sigh of relief. Relief that we survived another day. Relief that they are in bed. Relief that I get 2 hours of adult time. Relief that we overcame the obstacles of the day. Just two weeks ago I found myself in this exact scenario and my husband walked into the room. I asked him “do you ever find yourself sighing the biggest sigh at this time of day?” He answered in his cool, calm way “every single day.”

Look, I know we are not alone. I know that parents all around the world have this same feeling when the kids go down. When they have survived the day. As parents so few of the moments in a day are their own. So few of the moments are filled with the things that are just for us. We live our lives for our children. We cook for them and clean for them and work to provide a home for them. We worry about them, we console and guide them. We prepare them for the world ahead. We put our needs on hold to provide for our kids. And because of all of this, sometimes we sigh in relief when they are in bed for the night. We sigh. We linger for maybe just 1 moment and relish in the survival. And then we start the preparation to do it all again the next day. We make lunches, we clean the house, we make schedules, we fold laundry. We do these things because they are a part of our schedule. They are the routine we have adopted. And we do them because they need to be done. And so, we do all of these things. And sometimes we are tired. And sometimes we wonder where we will find the strength to push on. And sometimes we cry. And sometimes we hold it all in. And sometimes we just cannot hold it in any longer. And in those moments we reach for our touchstones. You know, the people in our lives who help us through. The people who give us strength. The people who do not judge us or question our feelings. The people who understand our struggle; understand our survival. The people who forgive us for being less than perfect.

I did not understand just how much truth was behind the saying “it takes a village to raise a child” until recently. Dude, it takes a VILLAGE to raise a child. Like, a whole, fully populated village. As a parent you learn just how true this is. And depending on your parenting journey; some may realize this sooner than others. And so, you build your village. You fill it with your touchstones. You fill it with the people who are on your team. You remove the people who are clearly “not” on your team. You build your safe place in the middle of this village. And you stay inside. You become a part of the village And, it becomes a part of you. You do this because you have too. You do this because without it; it would be too much to handle bear.

We built a village. We filled it with our touchstones. We built a team. We removed the people who were not on our team. We built a village because we had to. The thing about being in the village; is that is happens very naturally. It happens because it was meant to happen. When your life gets off course you realize that there are 3 types of people (1) people who will ride the storm no matter what (the touchstones), (2) the people who will always have the best intentions and will do their best when they can (your team) and (3) the people who just do not get it. There is only room in the village for the first two types. And believe me, I wish that I had time in my day to sit down and talk to all of the number 3’s. To explain to them exactly what I am going through. To give them the tools and the strength to “get it”.

These 3 types of people present themselves very quickly once a storm hits. Things that were a certain way…seem different after the storm. And all at once the people in your life are sitting in front of you in 3 very specific; very different categories. And so, you build your village. You grab on to your 1’s and 2’s. You praise and thank them for coming with you. And you say goodbye to the number 3’s. Sometimes you say this without words. Sometimes that is just easier. They know…and you know. So you move forward. Safe in your village. Thankful to the people who have made the journey with you. Thankful in ways they may not know. Thankful in words you may not always speak as clearly as intended.

And so now, today, this is what I say to my village….

Thank you. Thank you for coming on this journey with me. Thank you for forgiving my imperfections as I navigate something I am struggling with. Thank you for allowing me to struggle. Thank you for holding me up when I cannot stand. Thank you showing me kindness. Thank you for loving me. For loving my family. Thank you for seeing past labels. Thank you for validating my fears. Thank you for what you say. Thank you for what you do not say. You are in my village because without you I could not bear this journey I am on. Because I felt your love and support so completely; that I knew your place was with me. Because I need you. Because in some way I know you need me too; you want to learn from me and this journey I am on. Because I want to share our journey with you. Because I can see that you want to share it too. For all of these reasons and a million more…thank you.

We all build our own village over time. It is a survival tactic. Ours went up fast and furious. There was a time that I felt trapped by our life; by our diagnosis. A time when we hibernated because it was easier. A time when I did not know how to feel safe out in the world. I do not feel like this anymore. Today, I know that the support we have built goes everywhere we go. It is all around me.  I know that in a moment of weakness you will grab my hand under the table and squeeze it when someone says something ignorant. I know that you will help me escape when I need an out. I know that you will divert attention away from the things I cannot let other people see. I know that you will keep me safe. Will keep us safe. I built a village because I learned that everyone does it; for a million different reason in a million different ways. I built a village because I am stronger now. Strong enough to say that I cannot do it on my own. And thankful every single day that I do not have to.

JS

It is ok if you do not know what to say to someone going through something that you cannot relate to. It is normal for you to feel unsure or uneasy about coming up with the right words. So many times I can see that people are struggling to understand how to talk to me about our life. I can see it in their nervousness as we talk. I can see it in the way the conversations seem to go on but really never go anywhere. I can see it in the conversations that are not happening anymore. I get it. You don’t know what to say. You are worried about saying the right thing and even more worried that you may say the wrong thing. But, to be honest, I don’t need you to say the right thing. I just want you to say something real. Talk to me in a real way. Because what I am going through is very real. The last thing I want is for every conversation I have to be about the things in my life that are hard. But, I need for it to be something that we acknowledge. I spent almost a year “in the closet” and now that I am out I am ready to talk to you about all the pieces of my life; even the messy ones.

Don’t worry, I’m not going to dump my life in your lap. I’m not going to overshare and give you the gory details. Our gory details circle is a pretty small and tight group. The people who are going to get those details know who they are. They know that with no notice I might fall apart. They know that sometimes I cry when I’m happy and sometimes I laugh when I am sad. They know that I am taking life one day at a time. And no matter how comfortable (or uncomfortable) it may make them they would never make me feel that way. So you do not have to worry about the yucky stuff.

Let’s talk about life. Let’s talk about treatments and prognosis. I’ll tell you how incredibly far my amazing son has come. I’ll tell you that I have more days that are filled with hope than sadness. I’ll tell you that we are doing our best. I’ll tell you that we hope to put gray in traditional 4K but we have some hurdles to cross this summer for that to be a real option. I’ll tell you that this year has changed me. Changed me in ways I struggle to explain.

Sometimes it is the relationships that are the strongest that suffer the most when something, or someone, changes so abruptly.  Because I’ve changed, and because we’ve changed; maybe our conversations are different now. I don’t blame you. I’m not mad at you. I don’t feel resentful towards you. I am not jealous of you. I get it. You see, some people are really great at growing together and other people struggle with it. Maybe you don’t know how to talk to me. Or maybe my life, in all of its scattered pieced glory, is just too much for you. I get it. It’s too much for me too sometimes. I have room in my heart to understand that people grow and people change; and I have room in my heart to believe that one day our conversations may be back.

Then there are the casual simple conversations with almost-strangers that fill me with so much joy. Just last weekend we ran into the parents of friends from high school. We had such a lovely conversation about life. A real conversation about my life and the things I am facing. And a real conversation about things that they are facing in their live too. And then we gave hugs and said our goodbyes. I left that brief conversation feeling so much joy. So much happiness that it was so easy for them to talk to us about things that are hard. It made me wish that all conversations were that easy. It made me feel like autism maybe wasn’t quite so scary.

I know it’s hard. I know you may not say the perfect thing. And I forgive you in advance for being nervous or hesitant. But the next time you see me or someone else living on the spectrum; promise me that you will have a real conversation with them. Because if we all stop being so afraid and so nervous to talk about autism then we can take the power away. We put the power back in our hands. I learned this year that things are only as big and scary as you let them be. Sure, there are days when all that we face scares the heck out of me. But those days are getting easier to handle. Why? Because I took back the power. I’m talking about it, learning from it, and now I’m putting it out there in a very real way for other people to think about.

I know you are worried about saying the wrong thing. Sometimes I don’t know that something will offend me until I hear it out loud. And this, like autism, is so specific to each person going through it. As part of my mission to put our message out there; I will share a few thoughts with you on the “what not to say list.” But please remember, this is just us. Someone else might feel completely different:

4 things I prefer not to hear…

1. The word autistic. I hate it. We choose to see autism as one part of gray. I prefer not to call him autistic because I refuse to let autism define him. He is Grayson; Grayson has autism.
2. “That’s not autism it’s just ________” (three, boy, a phase, etc.) Look, I get it. Sometimes Grayson’s behaviors look like every other three year old boy. But sometimes they do not. James and I have seen all of it. We live through the ups and downs every day. Try to remember that life is so much more than the one moment of time that you are seeing.
3. “He will grow out of it.” Actually, he won’t. Autism is a lifetime diagnosis. While early intervention and intensive therapy are the most proven treatments to minimize symptoms as Grayson moves through his life; he will always have autism. He will learn to cope. He will learn to replace his instinctual behaviors with more socially appropriate behaviors. He will learn to have appropriate emotional responses. But he will always have autism.
4. Any time someone tries to draw comparisons to Grayson from someone else they know with autism. Stop! They are not the same. Every child with autism is unique and different. And every parent NEEDS to see their child this way. It is part of the process…part of the survival. Sure, the social markers and many symptoms are similar. And you may know that gray’s limited eye contact is a symptom because so-in-so’s child who has autism also has poor eye contact. Instead say this “I notice gray makes eye contact occasionally, that’s great.” This conveys to me that you know something about autism, it acknowledges something real about Gray, and it is positive.

Let’s talk about things that are real; even if they are difficult. Let’s show people in our lives that even though we cannot relate; we are trying. Let’s talk to our children. Let’s teach our children acceptance (by talking about it) and tolerance (in the way that we talk about it). My biggest hope is that Grayson provides an opportunity for people in our life to talk to their kids about difference and inclusion. Because if I have learned anything over the past year it is that the actions of other people impact this journey we are on.

Just remember, you don’t have to be perfect. You can slip up and say the wrong thing. If you say the word “autistic” I may gently guide you to different wording, or I may not say anything at all. Every day, every conversation, is different. Let’s all be real. Let’s all be compassionate. Let’s all be better.

In honor of April 2nd – National Autism Awareness Day. In honor of Grayson.

JS