Autism, feeding disorder, Grief, Guest Blogger, Parenting, Special needs parenting

How I Learned to Embrace My Role as a Special Needs Mom

By: Stephanie Reitenour

Five years ago, I was a kindergarten teacher in Colorado enjoying mountain life with my husband, Nick. We were incredibly involved in our church, our community, and the schools. My life was busy and full, and I loved life. I had a job that I liked, and I felt confident that I was a great teacher. At the beginning of the year, I watched little 5-year-olds come into my classroom not knowing how to recognize their names, and by the end of the year, I graduated them as readers and writers ready for 1st grade. I loved going out with my friends and spent most weekends hiking and exploring the mountains. It was a good life in Colorado, but at the same time, it was hard living so far from our families in the Midwest.

When my son, Dexter, was born, we decided to move back to Minnesota to be closer to our family. At the same time, I decided that I wanted to leave my career and stay home with my son. While I wanted to stay home with my son, I still needed to find a way to help my family financially. I decided to open an in-home daycare with a built-in preschool curriculum. Since I had taught kindergarten, I knew the need to have children socially and academically ready for Kindergarten, and I knew I could help fill the gap with my daycare. I was initially very excited to start my new endeavor but quickly learned how isolating working from home could be. I had no idea that making this decision was going to alter my life more than I could have ever imagined.

A year after we moved my son Rowan was born. Rowan was born six weeks early and spent time in the NICU, and Dexter was only 14 months old at the time. It was challenging to balance the needs of both during this time. I knew that premature births could cause developmental delays, and I spent the early weeks concerned about Rowan’s future. When I came home from the hospital, I returned to a life of raising two babies under 15 months. I had no friends that had children at the time, and I began to feel isolated socially. I no longer went out with my friends, and I stopped serving in my church. I hardly went out anywhere because it was difficult to get the boys ready to leave. We often had to leave places early because Rowan would have meltdowns anytime we were out of the house. Running a daycare with six other tiny children was challenging as well because I felt guilty for not giving my boys the attention they deserved. I started to suspect Rowan had delays around his first birthday, but I dismissed it thinking I was just not doing a good job as a mom. Early on I felt like I could help him by loving him more and giving him more attention.

When Rowan was about 12-18 months old, I had to pull away from all social activities to keep up with the emotional toll I was holding inside. I went from this happy, carefree, giving person to a sorrowful, lonely and anxious mother. I could not seem to keep up with the demands of running a daycare, taking care of Dexter, and working through Rowan’s troubling behaviors and feeding difficulties. Rowan would only eat baby jar food until he was almost two years old. We tried feeding therapy, but the treatment did not seem to help him progress. Finally, I resigned myself to letting Rowan eat whatever would give him calories and nutrition. Gradually, he began to eat fruit and other carbohydrates such as bread or granola bars. Early on his preferences of foods changed weekly, and we wasted a lot of food. His fluctuating food preferences frustrated me cause I never knew what he would eat on each day. At this point, I had to swallow my pride and become flexible with meals. If Rowan only ate a banana and ice cream one day, that was ok with me because at least he had eaten. There were a few times he would go 2 or 3 days without eating anything even though I tried everything in my power for him to eat. His refusal to eat made me nervous, and multiple times I considered taking him to the hospital. However, every time I decided to leave, he would ask me for something to eat. Well-meaning people would make comments about his eating issues, and I felt myself further isolating myself from people around me. I didn’t know anyone else going through these challenges, and I didn’t know who to talk to about my frustrations.

When Rowan was 2 and Dex 3, we found out we were pregnant with Spencer. I was very excited to have all boys. We already had all the clothes and toys and had plenty of practice raising boys. We began praying that Spencer would arrive on his due date and be happy and healthy. God knew we needed a good natured, good sleeping baby because Spencer was easy from the beginning. Dexter was a great big brother, but it took Row some time adjust to the new addition to our family. Even though Spencer was my most relaxed boy by far, having a newborn was still challenging.

My rock bottom came when we decided to move from the city to a larger home with more yard and a better neighborhood. While our house was on the market, I didn’t sell the daycare or send the boys anywhere else. We had 15 showings in 14 days, and it broke me. I collapsed into my husband’s arms and cried. I cried right there in our pristine living room in front of all my daycare kids, and in front of my boys. I Sobbed. I decided things needed to change. I was tired of feeling alone, frustrated with Rowan’s quirks, embarrassed to go out in public or ashamed to think Rowan might have special needs. I went to talk to a wonderful counselor a couple of times and got started doing the work to turn the negative aspects of life into a positive experience.

After we moved, life did not get any more comfortable, and Rowan’s challenges only got harder. Once we got settled into our home, we decided to get Rowan tested by experts, and he was diagnosed with autism. I felt relief immediately after he was diagnosed. I was relieved to have someone tell me I was not a horrible mother and my child was not defiant. I felt guilty for feeling relieved that he was diagnosed, and I continue to struggle with these emotions.

Once Rowan was diagnosed with autism, we found out that the city we moved to had one of the top-rated early education autism programs in the state. Rowan will start his new preschool with built-in therapy by the end of this year. We also found a fantastic church that has a ministry to moms of kids with special needs. I started going out again with friends and sought out new relationships to connect with other moms. I chose to embrace my kids’ needs instead of being frustrated by them.

I finally realized why I made that huge decision to have my daycare. I am Rowan’s greatest advocate, and I understand his needs more deeply than anyone. I am so incredibly thankful I am the one who gets to teach Rowan how to handle his big emotions. I am the one who deals with his eating habits and strange choice in clothing or activities. I could not be the mom he needs if I worked outside the home. I feel as though I am called to stay home with him and my other two amazing boys to see them through their preschool years. I took off the coat of shame and embarrassment and put on a jacket covered in joy and pride over the growth of my boys. I have learned to look past Row’s quirks and see the areas which he excels. Rowan is brilliant at math and geometry. At just two he already knew he letters, numbers and sounds. Rowan also has incredible balance. He can climb to the top of any tree or rock and easily navigate the hardest ladders and play structures. He is also compassionate, funny and full of life. I think the best part of having Row is that my other two boys are naturally learning how to love and be patient with someone that may think and act a bit differently from them.

This experience taught me that I love teaching, and I want to return to education after my boys are older.  I am currently getting my masters in early childhood education. I hope to open my preschool facility with a significant emphasis on having programs for kids with autism like Rowan. Going through the last few years of challenges and ultimately a break down has given me incredible clarity as to what I want to do with my life. I would have never guessed five years ago I would be working in my home, getting my master’s degree and dreaming of the day in the not too distant future where I will have my preschool program geared towards kids like Row. It’s not the life I would have chosen back then, but it is the only life I want now. I don’t know what the future holds, so I decide to focus on my present and bask in the beautiful life my boys have given me.

My hope is sharing this that other moms that are new to the special needs world will see that anything is possible. Even with challenging circumstances, we can make changes for the best. We don’t have to be ashamed of our situation, and we can find ways to find our happiness amidst the messiness of raising a child with special needs. I am finally happy, and I know this happiness is possible for all mothers that are just like me.

Bio: Stephanie Reitenour lives in Monticello MN with her husband, Nick and 3 boys. She is an in-home daycare provider. She loves hosting dinner parties, playing at the park and dancing to music with her boys. She is obtaining her early education master’s degree from Capella University and hopes to go back to teaching in a couple of years.

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1 thought on “How I Learned to Embrace My Role as a Special Needs Mom

  1. Thank you so much for sharing your experiences. As a newby special needs mom, I constantly struggle with embracing my reality. But God is good, I know that he’s called to this so I know that’s He’s got me. I used to teach as well, and have been thinking of going back to school for a second masters degree, but I don’t think it’s the right time just yet. I was able to relate on so many things with you, thank you again so much for opening your heart.
    -Nelly

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