Delayed. You have heard me use this word many many times so far to describe Grayson. This is one of the most common words you hear when practitioners are describing your child with down syndrome. Not always in a negative manner, but more in a matter of fact way. Oh, how I used to hate hearing that word. To me, it felt like a judgment or prediction about his future. A future that would be filled with delays, setbacks, “not quite there”, and not enough. (That was before my mental transition of thinking I needed to have to have “perfect” children. )However, as I’m learning and trying to grow as a person, I am beginning the process of replacing the word “delayed”, with “slow down”, (not to be mistaken for “slowed down”). I kind of like it…..”slow down”. It’s “my new fing” (as my AJ would say before he could pronounce his “th” sound). I’m trying to embrace a slower pace for as long as I possibly can.
Life feels like a rat race when you run a business and have children, and I just refuse to run any faster. Having a child with down syndrome, or any special need, causes you to slow down the tempo you set for your household and cut WAY back on the extracurricular activities. Have you ever taken a walk through the mall, or park with a two-year-old? They walk so slow it feels like you are walking backward! Having a child with special needs sometimes feels the same way. I am a go-go-go snap my fingers lets “get her done” kind of person with my kids life and our schedule. So going sloooooow feels like torture to me, but its something I need at this stage of my life. Loosing my youngest brother has triggered some anxiety in me, and trying to do life at a fast past just doesn’t work. I get dizzy, clammy and really hostile, and my kids mostly suffer from having a parent in crazy mode. I can only handle one activity a day with my schedule. “First come, first serve” is my new silent motto (well I guess it’s not so silent now that I put it out there). Along with my body always trying to go fast, I realize my mind is also at the same speed. While I am still doing an activity with my children, I am already prepping them for what time we are going to be finished the current activity, and what we will be doing next. Its like I can’t let them enjoy being in the moment, I have to make sure they are ready for the next moment, so when that happens, we are ready for that next moment. That’s how my mind works, and I am desperately trying to change it.
His delay in certain areas has caused me to slow down even when I didn’t want to. He had therapy every other day until he was 3, which kept me from putting the kids in a ton of activities. If Grayson were walking and running by now I ‘m sure they would have all been in soccer, ballet, basketball, art, music, and Spanish tutoring already before the age of 6 (because it’s never too early to put your child on track for Ivy League college). There just simply wasn’t time for that lifestyle, so we never jumped in. My kids never asked for it either, so it’s not like I have to neglect them to care for Grayson. Right now their after school activities are once a week, and Grayson twice a month. Even now with Grayson’s easier schedule and therapy all being during school hours, I haven’t changed the pace.
Grayson not being able to talk yet at age 3, tho, makes it feel like a huge #momfail and it also makes me feel like I am not prepared for what’s coming next. It feels like instead of strolling through the neighborhood, I’m fast walking on a treadmill…going nowhere. It causes me to worry about him in school and the onslaught of questions my mind conjures up hammer away at me, like “how will he be able to keep up with his peers if he is so delayed?” I feel like if I could just wait to start him in Kindergarten, not when he is 5, but when he is ready, I would worry less. But I can’t change the school system, unless I home school, and that “gift” was on my mother, but skipped right over me!
There is safety for me in knowing what to expect next, and not just knowing, but preparing for it. I have a lot of trouble just sitting, and being with my kids. Its something I am desperately trying to work on, but haven’t figured out how to yet. Maybe I have undiagnosed ADHD, and I can’t sit still long enough, or maybe I’m so self-absorbed with what I have going on, that I can’t get out of my head, and into my kid’s world of play and what’s important to them. My mom was never like that. She would sit and color with us, play games, or just watch tv with us all the time. Yet she was always doing dishes, always cooking us homemade meals, always cleaning and doing laundry. She raised 4 kids, never had a babysitter or house cleaner to help her, and it’s not like she had more hours gifted to her then I did. I can’t use the excuse that I don’t have the time or have too much to do…not with having the example of my mom before me. So it must be more than that? Why do I have trouble being present in the moment without worrying about the milestones he should be achieving now, without worrying about the schedule, or letting the kids finish a project or activity and not let them fully finish before I am telling them what we have to do next? Why do I keep forgetting all the things Grayson couldn’t do, that he now can do? I remember the time when he couldn’t even hold his head up because his neck muscles were so weak. I couldn’t carry him on my hip until he was at least 8 months, and even then he felt like jello in my arms. Now he is so strong I have to grip him super tight because when he is ready to get down, he will push on me so strong that I almost drop him.
It seems like I need to set milestones for myself! My next goal for myself would be simple, yet VERY hard. SLOW DOWN! Enjoy Grayson where he is and fight the urge to “wish for” or “plan for” where he needs to be. Because every time he hits a milestone, there will be another one to achieve.
Right now Grayson can walk really well, and I’m sure he will be running a little by the summer time. This past weekend he hopped on a scooter and rode it. That was a huge success for me. He is just starting to walk up the steps and into the bus on his own, and his balance is getting better, which will be great for springtime because my kids LOVE going to the park. (If going to the park where a sport, I would get full rides for college for all three of them!) I have to remember to focus on all that he can do, PAUSE (all caps because I need to keep being reminded), and enjoy where he is now. Writing this blog also helps me to do that. The number one complaint I hear from moms ALL the time about their children is that they grow up too fast. I can say, that hasn’t been the case for Grayson, I feel like I was able to take in his baby years, and now his toddler years. I am going to make the best of it and relish in how long I have a young baby/toddler for as long as I can! And when I can figure out how to stop worrying about his future, I will write a book and it WILL make the New York Times bestsellers list!
I wanted to close with a few pictures of the milestones he needed to do at age three.
Matching the pictures (and placing them down Riding his scooter
correctly using his thumb and first finger )
“Pretend “play with dolls, feeding, changing their diaper etc (my sons will all know how to feed a baby and change a diaper..ladies can I get an AMEN). This really helps their motor skills, social skills, and to develop their imagination.
No Down Side 