Welcome to Mikey’s Journal!
One Family's Story
Introduction
Mikey’s Journal is our family’s story told through the framework of our son Michael’s journals. Michael is a lovable guy with a charming smile who has autism and intellectual challenges. It is my hope that we will build a community of families here at Mikey’s Journal and it will be a place you can come for a dose of positivity, joy and comfort. It may be particularly encouraging for those who are just beginning their journey as parents of kids with special needs because it shares one way that family life can work.
Our Purpose
When our first son, Will, was born, I followed What to Expect in the First Year, and then What to Expect in the Toddler Years. I checked milestones and made sure he was ‘on track.’ It was comforting and reassuring to see he was right where he should be in lots of areas and ahead of the game in others. These books about typical development let me know that Will was doing just fine and I could focus on enjoying this special time in his young life.
Then when Michael was born, he wasn’t meeting many of these developmental milestones. Did this mean that the ‘just enjoy’ would be replaced with constant worry and goal-setting and doctor’s appointments and therapies? It was an overwhelming time.
This eventually led to a diagnosis of Autism and Cognitive Delays and I needed to learn how to be a mom without a roadmap. I wouldn’t be able to chat with moms of kids his age and ask, ‘is this normal?’ or ‘where should he be right now?’.
As parents of kids with special needs, we don’t get a clear roadmap, but that doesn’t mean that we can’t have strategies that help our kids grow, learn and develop into strong people who contribute to their families and society as a whole. More importantly, it doesn’t mean we need to miss out on the joy of watching them grow and learn.
This blog shares our daily life. It lets you see one way things can work at home. If you are a family struggling with the overwhelming impact of a special needs diagnosis, you can come spend time here as a positive, uplifting moment in your day. I hope you’ll find some helpful perspectives, learn from our missteps and our victories and in the process, know that you are not alone in your unique journey raising your special needs child.
Our Personal Story
We’re a family of four. My husband Dave and I have two boys. Will is our neurotypical son. He is hilarious and caring and he advocates for Mikey instinctively. Michael has special needs and he is our reminder that knowing how to be happy is a a true gift. We love each other fiercely and we try to find joy in every day. There have been many challenges along the way. It hasn’t always been easy but we’re finding our way.
Parenting Philosophy
It should go without saying that our parenting philosophy applies to both of our kids. We certainly parent them as the individuals they are, but this is our overarching idea of how parenting should work.
One
By owning who we are, we find people who appreciate us as individuals. On the flip side, when we try to hide who we are, we are wasting energy. If we don’t dance to the beat of our own drum, how can we find our tribe?
Two
Each day is an opportunity to learn and grow for parents and for kids.
Three
Life is enrichment! Not all therapy happens in an office with a professional.*
Four
Parenting a special needs child means that our parenting job is a marathon, not a sprint. We must plan for Michael’s care after we are gone out of respect for both Michael and Will.
*I am not advocating for a lack of professional involvement. I think doctors and trained speech therapists, occupational therapists, behavior therapists, BCBA’s and special ed teachers can all be vital parts of raising a child with special needs (which ones depend on your child’s needs). This blog is about the time in our family that happens outside of therapy. Even if you have the resources to fill most of your child’s day with therapy, there will still be time when you are together as a family. We are sharing our family time with you – we think you’ll find comfort in the fact that our days, and years, have been filled with love and fun.
Blog Content
We begin the blog one decade after Mikey’s first journal entry. We took pictures and pasted them into composition notebooks. Michael could choose what he wanted to write about. He usually wrote one or two sentences each day. I share each journal entry and then I share a bit about our family that relates to that topic. The blog covers lots of typical family life: our stories, strategies that worked, epic fails, and my reflections on parenting our unique family. On days he chose not to write a journal entry, I’ll share other topics of interest.
As a former elementary school teacher, I’ve organized these into cute categories based on the day of the week:
Sunday Scaffolding
I take a specific skill, like showering independently, and show how we helped Michael to become independent at that task each time we do this, we’ll share a different life skill and different strategy to help teach the skill.
Manic Monday
These blog posts acknowledge the parts of parenting that can be overwhelming and how we handle the chaos.
Tuesday’s Timely Tip
These posts help parents step out of the day-to-day to look ahead to what might be coming up… preparing for back to school, getting used to wearing a Halloween costume slowly, preparing for the craziness of the holiday season or a summer vacation. They are things best done ahead of time to make the actual ‘day of’ easier. This is one of the few times on the blog where I give advice. It’s really just a way to make things easier by doing a little bit of prep work and planning ahead. As always, you’re the expert on your child…if it doesn’t work for you, don’t do it.
Wednesday Wisdom
These feature a relevant quote over a photo I have taken of the world in general or of Michael’s artwork. The blog post discusses the quote. These give me a chance to reflect on my own parenting and sometimes broader topics.
Thursday Thoughts
These blog posts focus on thoughts I have had about parenting in general. They might be helpful in thinking about your own family and generating your own solutions because they provide a framework.
Flash Forward Friday
In these posts, we let parents sneak a peak at a journal entry Michael wrote later in his development…it’s sort of a way to satisfy the curiosity we have as parents about how everything will turn out. Since you can’t peek ahead for your own child, we can at least show you how some things are going for Mikey a decade after his journal began.
Saturday Suggestions
These blog posts cover common things that pop up and suggestions for possible ways to handle them (birthday parties, play dates, fears, etc.). Over time, these may be suggestions from readers on topics of interest. As questions come in, I can address them.
Community Building
We have one experience raising one child with special needs and one typical kiddo. We’re not experts on anything except them. We hope Mikey’s Journal will be a place where we can build a community of parents who can help and support each other. We hope adults with special needs will read and comment and provide insight. We hope members of the community can help each other feel connected and less alone. Most of all, we hope to keep this an overall positive experience. Our daily lives are filled with struggles and Mikey’s Journal can be a place to go for reassurance and positivity. We hope you’ll follow us on social media and subscribe to our monthly newsletter. We want to hear from you in the comments section to make our community active and vibrant.
Connect With Us
Reach out with questions or topics of interest.
About the Author
Erica Mauro is a mom to two teenage boys, Will who is neurotypical and Michael with Autism and cognitive delays. She holds a BA in Psychology from Colgate University and a Masters of Psychology in Education from Columbia Teacher’s College. Before staying home with her children, she worked as an elementary school teacher. For five years, she served on the Board of Directors of the Molly Ann Tango Memorial Foundation, a charity dedicated to enriching the lives of children with special needs. In partnership with her husband Dave, she aspires to parent by using daily life as an opportunity for therapeutic intervention, seizing on real experiences as opportunities to build skills and strategies for Michael in a joyful, loving home environment. On the tougher early days, she just tried to get everyone safely to bedtime and start fresh in the morning. *wink* 