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.