This is a featured article from our 2nd edition of the LIFTS Magazine.
Finding Our Footing
By Anna Semple
My son “Alex” (an alternate name for privacy reasons) just turned three. I can’t decide if his birth seems like yesterday or a lifetime ago, or maybe both. They say that your brain goes through as many changes when becoming a mother as it does during the teen years. I’ve long known this because of my job in early childhood, but didn’t really take the time to think about what this actually meant until after I became a mother myself. Comparing my childhood self with my young adult self, I see the same person in so many ways, but with different priorities, ways of thinking about the world, and levels of confidence and skill in navigating life on my own. Parenting has brought on the same sensation of feeling different, but also just the same.
Alex has Down syndrome. When I was pregnant, I shared this information quickly as a way to bridge a connection and set the tone of the conversation. I didn’t want people avoiding real conversation because they didn’t know what was okay to talk about. My partner and I were lucky to have incredibly supportive friends, with the wisdom to ask how we felt about the diagnosis instead of jumping to the conclusion that it was a tragedy. Even awkward comments felt supportive, as long as people were open to hearing how we were feeling at that moment. I knew that a month earlier in my life I would have been unsure of what to say as well, and I was okay with imperfect expressions of support.
My feelings were complex during pregnancy, and talking them through with my partner and friends was incredibly important. I often worried that I wouldn’t know how to connect with my son. I leaned into the words I read from other parents, that “once your baby is born it will be fine, he will just be your baby.” Before becoming a mother, I didn’t know that love for your children grows out of thousands of tiny moments of nurturing, not because your baby shows up in a certain way. And when Alex was born, I could see the depth in his sparkly little eyes and knew I didn’t need to worry about connecting. I’m saddened now that I didn’t understand this before. People with Down syndrome are just people, and being able to connect really isn’t surprising.
Now that Alex is older, I am slower to bring up this diagnosis with people who haven’t met him. Mostly because there are so many other things to talk about, but also because some people’s default is to focus on the differences. I need to start with the foundation that Alex is in many ways the same as any other kid. I want to share conversations about bedtime routines, picky eating, and hilarious toddler antics. I want people to know that Alex is a little charmer who loves to play games, whether he is catching my eye with a sly smile before tickling me, or giggling as he hurries down a path to kick pinecones in the park. Only after we connect as fellow parents do I mention the extra chromosome, or tell them that I’m sometimes overwhelmed with the added layer of thought that goes into every parenting decision, with juggling all the appointments, and facing the scary unknown of the long-term future.
These friends and acquaintances are an important support system, but I am also thankful our family has had outside help with navigating the extra considerations. Young children with delays and disabilities often qualify for early intervention services, which provide free parenting support and specialized services (like physical, speech and occupational therapies) until children turn three. We enrolled when Alex was two weeks old after one doctor gave us a laundry list of things that we couldn’t do, including being worn in a baby carrier. After filling out a short form, we were able to get in quickly to see a physical therapist who determined that he could in fact be safely worn in some specific carriers. Walking in the woods is a big part of our family identity, and it was an enormous relief to learn ways to safely do this with our son. We worked with this same physical therapist until recently when Alex turned three and aged out of the program.
Our whole early intervention team supported us in setting goals for our son and our family. They worked with us all to help achieve those goals through therapy exercises and connection to resources in the community. Our family support specialist knew what paperwork or appointment needed to happen at different phases. They encouraged us to apply for and enroll in Early Head Start. Most of our experiences with doctors have been positive, but we occasionally received conflicting or confusing information at appointments. We knew our early intervention team couldn’t give medical advice, but they did help us generate questions and research options if we wanted a second opinion.
When looking into preschools, we were referred to someone at our local Child Care Resource and Referral office who equipped us with information on reasonable accommodations and a list of questions to ask when we visited different programs. This helped us self-advocate and, ultimately, we chose a program that was open to adaptations and that valued my family as collaborators in Alex’s education.
Each person we’ve worked with throughout these three years has been a such a cheerleader for Alex. He warmed right up to each of them, and adored being the center of attention during appointments.
Like any new parent, I can’t imagine how overwhelming these first years would have been for us without people to turn to for help. Friends who knitted blankets, left Tupperwares of food and stopped by to check in on us. Professionals who supported us in becoming advocates, and who began teaching Alex the skills that help him gain independence. Both helped us find our footing as we underwent the huge shift in perspective and lifestyle of becoming a family. We are forever grateful for the help we had welcoming our beautiful son into a whole community of people who care for him.
Resources: Use the LIFTS Online Resource Guide to search for “Child Development Information and Support” and find organizations that assist families in screening children and making appropriate referrals.
The LIFTS Online Resource Guide features a wide range of services and service providers across the state of Montana that are relevant to parents and caregivers of young children. As we are in the dog days of summer, we wanted to highlight two areas that we hope are particularly helpful for parents and caregivers caring for young children this summer: play spaces and public libraries.
Montana has a great network of public libraries that offer a broad range of services for families and young children. From “Books and Babies” to engaging summer reading programs, libraries can be a staple of the summer. As a bonus, most public libraries offer air conditioning and can provide a safe and comfortable environment to beat the heat in while you share an engaging reading experience with your little one.
Plastic bag painting
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