We are a week into November, but I’m reminiscing about October because it was such a great month for us. Luke is hitting milestones left and right, which reminds me that I better stop and appreciate how far we’ve come.

This time last year, we were sitting in our living room meeting with the Tennessee Early Intervention Service coordinator to come up with goals that we would like to see Luke achieve during his therapy. He would need speech, physical, and occupational therapy. Therapy sessions began when he was three months old and each therapist was scheduled to come to our home for an hour every week. It’s been this way for a year now. I am grateful for these people who have become more than just therapists but like family. They love on Luke, cheer for him and encourage us. Every couple of months, we are able to check off goals from the list. Lifts head up. Check! Holds bottle. Check! Responds to name. Check! I often wonder if parents of typically developing children sit back and watch their babies achieve these goals with ease. I am certain there is a pause for celebration when their little one starts to crawl or say their first word. But as a parent of a child with special needs, I have become overly familiarized with the many milestones babies are expected to accomplish. Making lists and working continuously on them can feel a bit overwhelming — especially when the estimated time of mastery is unclear. We throw out the rule book and shelve “What to Expect the First Year.” Our journey is spontaneously planned by our tour guide!

In addition to the therapy that TEIS provides, we have chosen to incorporate National Association of Child Development (NACD) intervention services to assist Luke in reaching his developmental goals. NACD creates an individualized program based on a neurodevelopmental assessment for each child in need of services. Their clients come from all walks of life and range from children with autism to adults with dyslexia. For example, one specific goal from the very beginning was teaching Luke to crawl in a cross pattern. Why cross-crawl pattern? According to NACD, “The cross pattern movement is the beginning of that very fundamental movement of a right arm and left leg, left arm and right leg– the movement we use to walk and run, climb stairs and climb hills. When the child learns this by working on the belly crawl, they get all of that helpful tactile information through the limbs and through the torso, laying a strong foundation for more advanced forms of mobility. They also develop a very critical physical piece through crawling– muscle balance.”

So, for the first year of Luke’s life, we have been working on crawling (commando style tummy crawl) with the goal of eventually getting him to creep (tummy off the floor and move around on hands and knees in a cross-crawl pattern). I make no exaggeration about the time and effort Luke and I have given to crawling. I invested in knee pads, shed many tears and we would both get frustrated. I can’t tell you how many afternoons I spent on the hardwood floor, asking God why this wasn’t coming easier for him and when would it ever? Was I doing something wrong? Was I not working with him enough? I was often afraid he would come to resent me for how much I was making him work. The never-ending layers of Mom guilt!

Another aspect of the crawling goal was that he had to master cross-crawl pattern before he could sit independently. This method goes against the traditional order of mobility. Most babies are taught to sit first and then crawl. This explains why most of the time he posed for pictures on his belly. Yes, he sat in a high chair to eat, but it wasn’t the same as sitting on the floor to play. Our therapists agreed, and although they supported us implementing the NACD approach, I know they questioned if we were further delaying the typical developmental milestones. I kept him in his car seat when we went to the grocery store and restaurants. This, along with the work we were putting in at home, was painstaking. I wanted him to sit up, socialize, and greet strangers with his smile. I felt others thought I was hiding him or even thinking, “I guess that baby can’t sit because he has Down syndrome.” It was probably all in my head, but it was certainly not what I envisioned for the both of us when I imagined our outings to Target. I knew he wasn’t stable enough to sit on his own yet. As much as I believed NACD and understood their rationale, it was hard for me. But, I also believed that he would get there in due time.

At about 7 months he was scooting around and by 9 months he was crawling. It wasn’t a “perfect” crawl, (by the way, I have come to find there is no such perfect anything!) but he was mobile. Not long after, he sat on his own, just as NACD predicted. He was getting much stronger the more he crawled. He was moving on his own and it was fast. He would kick his legs like a frog, which made us realize we would have to work more intently on the cross pattern. He also wouldn’t stabilize his left arm. Instead, he kept it bent under his chest. More work and more tears, but I felt like we were getting closer. At times, he would avoid working altogether by sitting up and smiling back at me. He was on to me and made a game out of it! Finally, at 13 months he did it! He is now crawling and creeping in the cross-crawl pattern he has been striving to master all his life. He is so proud of himself. Now when he does stop for a break, he sits and looks back at me as if to say, “Do you see me, Mom?” Always flashing that mischievous grin.

Before Luke was born, I would often dream of things we would do together. I thought of places we would go and traditions we would share. When I was faced with the realization that our mornings or afternoons would be spent in therapy or program rather than a typical mother’s leisurely trips to the store or to lunch, I felt disappointed. But, I have come to find that that isn’t what will bring either of us joy. Seeing the smile on Luke’s face when he can get from one place to the next on his own is better than anything typical.

I have spent much of this last year figuring out how to be a good mother, which is a task in and of itself. Being a mother of a child with special needs requires a lot more patience and good note-taking skills. October was National Down Syndrome Awareness Month and it was the first time I felt confident about sharing what I learned. Posting facts and educating others was therapeutic and reminded me that I am not just Luke’s Mom, OT, PT or Speech therapist, but I am his voice. In many ways, Luke and I are growing together. It can be uncomfortable and painful, but the time and dedication we are giving to the process will prove to be worth it with each milestone reached.

As October came to a close, I knew I wanted to celebrate big. I wanted to break my buddy out of his car seat and do the things I always imagined we would do together. I thought what better way to celebrate than to take my sweet boy out on Halloween in his Superman costume, sit him in a high chair and enjoy some pancakes together. Needless to say, he enjoyed every minute of the attention he was paid by strangers and the sweet goodness of his special treat. We also took a little field trip to the pumpkin patch to stick our feet in the corn kernels. Not a bad way to end a great month!

“I can do all things through Him who strengthens me” ~ Philippians 4:13