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This is Advocacy
I have been thinking a lot about advocacy. What does it truly mean to fill your life with advocacy? As parents of autistic children, we spend hours upon hours advocating for our children. I often think of it as two sides of a brick wall. On one side, you have all the people you sit across from in different settings. On the other side, you are standing, holding the hand of your child. In this brick wall, one brick is missing. Through the hole, you try to use your words to explain a mountain of concepts you wish others innately understood. As you whisper through the missing brick, the wall…
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No matter how you are managing today, it’s ok
What I have learned
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Saying Goodbye is hard but sometimes necessary
Relationships are complicated to say the least. Sometimes we are drawn to them by history, titles given, or common ground during a major life change. They can be filled with laughs, tears, with warm hugs and soft careful words. They can also be filled with hurt feelings, imbalanced caring, and a mountain of history you can’t run from. I have had to say goodbye to people in my life as time has gone on. I have walked away with my head down and a broken heart. Knowing it was the best choice for me but longing for a world where things could be different. Sometimes the relationship has slowly turned…
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Five Types of Mom Friends You Need in Your Life, While Parenting an Autistic Child
Making friends as you get older seems more complex and more challenging, which seems funny since we learn so much about who we are as the years go on. When you have child with a disability, it feels like a complete mystery if you will ever find the mom friends that hear you and understand your life. Look for these ladies if possible. The been there done that, mom.She has walked through this life, and her children are older. She tells you that all your feelings are valid and gives you light that comes with time and experience. She also doesn’t judge the hard that you live each day. She…
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Living in a world of opposites
Living in the polar opposites, quiet and loud, lonely and grateful, small and large, present and searching. Today we celebrated Easter, it was a nice day. The kids explored their Easter baskets we took photos and watched each minute of excitement. I thought of my family and how many holidays have passed since we have been together. I thought of the massive amounts of growth both our children have had over the last year. As I watched my daughter wiggle out of her clothes for the 100th time, I thought about how spectacular her motor skills are. As Nixon named off the items in his basket, I thought about how…
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Heartbroken at the airport, medical exemptions are they still a thing?
On St.Partick’s Day, I got up at 3:00 a.m. had our bags packed the night before, ready for a trip with my baby girl to visit family in Montana. I filled a carry-on bag with new toys, snacks, hand sanitizer, charged headphones, and of course, our masks. That morning I woke up our two-year-old Nora, she meet me with a doe eyed look but was in good spirits. I changed her into a cute black shirt with toile on the bottom and slipped on a black hoodie paired with my favorite black chucks. We made the hour drive to the Mesa Gateway Airport. I unbuckled her car seat, slipped it…
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The way to find hope is to connect
I often think about what impact others have on my well-being and state of mind. I struggle with the open sharing of our life with others around us at times for fear of judgment. I have found comfort in the fact that others have shared their story with me and a deep connection out of small understandings of what others go through each day. I want our children to have empathy for others and an open mind to learn as much as possible about different viewpoints. Not to agree with what is pushed on them about the world, but when we have compassion for others, we can live a deeper,…
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Five things every special needs parent should hear
Are you walking into a new world of special needs parenting for the first time? Are you a few years in and finding things hard to manage right now? Or are you the parent who has walked this path and is now looking ahead at what services are there for your child’s future? Here are some gems of advice that I have received from others who have walked this path alongside me, before me, and some of my own. Advocacy can come in many forms. If you are the loud and proud mama or papa bear walking into an IEP meeting or evaluation asking all the questions and expecting answers…
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Love comes in many forms, her choice to love me
What is love, “a profoundly tender, passionate affection for another person.” Love comes in many forms. As a child, we think of the soft, tender love that sits amongst family. As an adolescent, we think of our rich friendships that are filled with late-night talks. As adults, we think of our romantic relationships that form foundations of growth, beauty, and struggle. The choice to love not found in common ties of biology is where I often land when thinking about love. I found pieces of myself in each person who has shown me love and understanding. The person that I think of most often holds the title Mom, Ann, also…
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Quiet pings of exclusion linger in the air
As special needs parents, we often feel shifts in our presence of quiet pings of exclusion. These pings happen before we have a diagnosis, and daycare providers or teachers start talking to us about our child’s development. They look down or away as they explain how your child doesn’t fit in or ask questions about any new changes at home causing behavioral disruption. They comb over all the differences in daily comments on sheets sent home or group photos taken of the children at circle time with views of our children playing off to the side by themselves. They say things like, “the other children are being patient with our…
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It’s ok if your wait is a little louder than ours.
Our son has been asking every couple of days to go to our local train park. We venture out rarely these days due to the risk in our state. This weekend the weather was beautiful, and we decided to take both kids. We went to the ticket counter in the gift shop and bought our tickets. Nixon watched as another boy, around two, touched the trains in the package. Nixon carefully picked a couple up and lined them back up in their place. I was holding Nora in my arms, and she was watching the couple in front of us. Nick bought our tickets, and we headed out the double…
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To the special needs parents who came before us.
When we roll into a new year in January or minds can drift to looking back at our choices over the last year and our goals for change in the new year. There is no doubt that 2020 will forever be one of the years we all can reflect on. In 2020 we became special needs parents and discovered both our children carried the medical diagnosis, autism spectrum disorder. When our children are diagnosed, we often hear that the words in no way changed who they are. The words on the paper provided a road to services and support they need. The words are only one small part of who…
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Autism Spectrum Disorder lives close to the spark.
When a person walks through a hard experience filled with overflowing emotions we often turn to the philosophies of the world. What are we doing here? What is the meaning of all of this? And sometimes crawling into the dark pit of why me? We sat down to watch the new Pixar movie “Soul” this weekend. The characters in the movie discussed the very complex concept of how do you find your spark in this world. I thought as we watch the character catch a tiny leaf falling off of a tree how I have watched my son have that exact moment over and over. And how often the beauty…
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Our shining star baby girl, would we be special needs parents for a second time?
Tuesday night, December 15, I sat with our beautiful daughter and read her a book before bed. As I started to read, the tears hit my cheek. I snuggled our last baby, our little girl, a little closer. I choked through each word of the book. Her in her two piece pajamas, listening to the children’s story, soaking up the tears falling from my check. She snuggled in, not noticing the tears or my shaky voice. I knew what we were facing the next day, looming in the air a second diagnosis day. This tiny baby had already given me so much. Nora was born into a mountain of worry.…
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Autism Evaluation Day
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I have learned to appreciate, in our unique parenting journey, to soak in the rare and swift moments when things feel the way I imagined parenting would
Earlier this week, Nixon woke up around 5:00 a.m. crying. As I picked him up out of his bed, his long legs were freezing. The temperature in Phoenix has dropped, and he loves to sleep with just an overnight pull-up. He has four blankets on his bed but usually ends up sleeping on top of them. I carried him into our room, and he snuggled under the covers. This has happened a handful of times since he was a baby. Once he is awake, he does not go back to sleep. But this morning, he snuggled in, put his head in my arms, and went back to sleep. I felt…
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It felt cloudy at times under our autism umbrella
Thinking back on the last year, I have been reflecting on how hard it was to fill out so many development boxes with no, how I felt defeated as a Mother and lingered in feelings that I somehow had failed my firstborn, beautiful baby boy. That under this new autism umbrella, we would be lost in the heavy rain of the neurotypical world’s expectations. I was ashamed of all the things I didn’t know. Missing all the tools, I would later gain that we’re not given to me early on. I did not understand that our son was trying to communicate how his system processed input from the outside world…
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What does intimacy mean, the changing intimacy seasons
What does intimacy mean? The definition of intimacy, closeness, a cozy private atmosphere. I have often been thinking about intimacy. How, over time, intimacy changes. Like small seasons of closeness. It changes in romantic relationships, it changes in friendship, and it changes with our children. When I think of my relationships with my husband, Nick, our intimacy has never been the flashy weekend getaways with thousands of Instagram worthy pictures. It hasn’t been an intimacy found over date night monthly box subscriptions sent to our house, although I would be open to trying it. At the beginning of our relationship, my husband drove a Chevy Blazer. He loved that car.…
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He felt safe behind the closed door of the night to open up his heart.
After a long day of parenting, some of my favorite moments come on the slow walk to bed. The soft, quiet moments are shared when the world is shut out with closed doors. Bedtime routines have changed over time as the children have grown. Starting with small baby cuddles swaddled in new parent unconditional love. Then to bedtime stories and soft lullabies in the dark. When our children are still small enough to hold, in footy pajamas, tiny heads snuggled into the crook of my neck. I still have a little time left here with my daughter Nora who has let me know she no longer wants me to sing…
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This year, the pandemic year.
Since March, I can remember very few times we have been out as a family of four. This weekend we went to the train park. Before we went, I had a fleeting thought that I didn’t know if Nora had ever been on a slide. She has been home most of the time since March. This thought hit me with a little ping. I have had many fleeting moments over the past year of sadness for all the lost firsts. I find it is more of the simple things that hit me than the big ones. I have mentioned to my husband in passing that it makes me feel extremely…
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Tommorow will be a new day
Every couple of months I wake up wondering if I can navigate through my day. I wake up tired, not the no sleep tired, or the tried where you know you did too much activity, but a tired that is deep to my core. I felt deep tiredness in my early 20’s from staying up late, filling my soul with live music over drinks. I felt a deep tiredness in my late 20’s of 14 hour study sessions for months at a time to take the bar exam. I felt a deep tiredness in my early 30’s of late night feedings, pumping sessions, and comforting tiny babies. This tiredness is…
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This week he made a friend
As a child, I often felt lonely. Strange since I grew up in a household of people. Not lonely in the way that I wished others where around, in a way where I wished there wasn’t so much underlying explanation needed about my life. I kept the door to those questions closed as much as possible. Still, when I break down my connections to the people closest to me often, people require a chart of some kind. I learned to use terms where people won’t ask too many questions and only open up my history when I become close to someone. I have had many meaningful and life long friendships.…
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Five Things I Wish I Knew Before an Autism Diagnosis
If you are new to this autism journey and are wondering how to process all the information out there. Here are some things I wish I had known while going through the process. All autism characteristics do not all fit into a checklist. Many of the early signs of autism we recognized later in our son as he got older did not fit into the standard website search. Our son, at an early age, loved anything round. He carried around balls, round fruit, played with practically anything in the form of a circle. We did not recognize this as fixed interest. When you think of an interest in something like…
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An Old Friend, the Water
Since Nixon was a tiny baby, he has been drawn to the water. We would put him in the tub, and he would kick his legs as fast as he could. We were surprised by his ability to move so quickly at such a young age. When his language began to develop, we got the most words out of him when he was in the bath, pool, or water activity. If he is having a tough week, a swim in our favorite creek has a magical ability to reset him. You can see the physical change in his body, his stress fades and words start to form again. His love…
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Arizona Long Term Care (ALTCS)
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