I married a man who had custody of his three kids. I went from no kids to three kids, full time. When I showed up they were 12, 10 and 6. Now they are 25, 23 and 19.
We then had two more. My nine year-old girl is neurotypical. My seven year-old son, Kai, is special needs.
When I was pregnant with Kai, my oldest daughter, Autum, and I were pregnant at the same time.
This was great fun (and caused my husband to joke about feeling like Father of the Bride). I had a pregnancy partner. We talked about what worked for nausea and what didn’t. We shopped for maternity clothes and swapped them. We were both pregnant with boys. And then, Autum left the pregnancy club and had my grandson, Jacob. About ten weeks later, Jacob’s uncle, Kai, was born. Both of these births were seemingly normal and uneventful from a medical perspective. We had two beautiful boys. I remember one time when we were all on the front porch of our house and someone asked us if the boys were twins. We had so much fun explaining that they were, in fact, uncle and nephew.
Jacob starting doing things. He sat up. He moved on from a bottle to soft foods to table foods. He started walking.
Kai didn’t.
Over time, as Kai began to fail his milestone checkups, the gap began to widen. They started to look remarkably different in age even though they were just ten weeks apart. Because Kai still seemed like a baby. And Jacob was evolving into a little boy.
Fast forward to now. The boys are seven. Over the years, Jacob has pursued Kai relentlessly to be friends and play together. Kai, more often than not, brushes him off. Not because he doesn’t love Jacob. Kai loves Jacob and feels very comfortable with him. It’s just that Kai is still developmentally in the 12-36 months range and so is still a side-by-side kind of guy. He likes having people nearby but doesn’t necessarily want to interact.
Over time, Jacob has figured Kai out. Because both of Jacob’s parents work, he takes the bus to our house after school, where he hangs out with us until Mom or Dad comes to pick him up. Jacob and my daughter get off their school bus together. I help Kai get off of his bus, which is different because he attends an all special needs campus in another town (no inclusion for him and this is the correct placement). When Kai walks up the path to our front door, Jacob often holds open the door for him and says, “Welcome back, Kai, I am so glad that you are here.” Kai smiles and walks through the doorway. Sometimes Jacob will share a banana with Kai, holding it so that Kai can lean over to take a bite. And Kai lets him do this. If Kai is doing something we consider to not be safe, Jacob will come tell me. He’s a good helper like that.
At the beginning this was really, really hard for me. As a former teacher, I am trained to see developmental and academic differences by comparing a certain student to the hundreds that I have seen over the years. The other students are called, “typical peers.” After a while in teaching, you get to know the wide range of what is considered normal or average behaviors and abilities. This skill highlights what are called, “red flags.” When you see a student who looks different, a red flag goes up in your mind. It is a caution to investigate further. To make sure that the student gets everything that they need to be successful. Maybe more support. Maybe special arrangements. Maybe testing, etc.
So, because I am trained to see it, after I became aware that Kai was struggling developmentally, for a while, it was all that I saw. And the comparisons with Jacob began in my mind.
When I would see Jacob playing with my daughter, I would think, that is how Kai should have been. When I saw Jacob starting school on a typical time frame with no intervention, I would be happy for him and sad for myself. Because Kai wasn’t. When Jacob was able to verbally request things, I was thrilled for him. And sad for Kai. And so it went.
But the thing that I came to realize after a while is that Kai is not bothered by this at all.
If there was ever a person who was completely himself, with solid likes and dislikes, preferences and a devilish sense of humor, it is Kai. Happy-go-lucky, happy to be here, not a care in the world other than having his basic needs met; Kai is totally himself.
Who am I to say that it should be different?
There is so much PRESSURE on special needs parents and caregivers. Some of it comes from our families, some from society, the school system and, ultimately, the vision that all children should follow a similar path. Developmental milestones that are checked off in the first year of life, potty training before starting school, pre-K at three or four years old, Kindergarten with its list of standards that must be taught in public school whether your child is really developmentally ready to learn them or not. The list just keeps going.
I fell into the trap, at least in my mind. It made me feel sad. Mournful. It made me feel like I produced a child that failed. Although I was wildly in love with Kai, it was always tinged with sadness.
What an absolute waste of time.
The second, and I mean THE SECOND that I figured out that all of this pressure was in my head and that I wasn’t required to feel this way, I was able to breathe. Because, guess what? IT IS ALL IN YOUR HEAD. Your child does not have to be typical. Your child does not have to progress at the same rate as other children.
Your child has the right to be exactly who they are.
Kai is exactly who he is supposed to be. Who I thought he would be is a fantasy. Comparing his development to Jacob’s is ridiculous. They are completely different people. Comparing real Kai to fantasy Kai is a recipe for disaster. And so not fair to real Kai.
Because fantasy Kai doesn’t exist. And, I have realized, I don’t want him to.
I am not saying I never feel a twinge anymore when I see Jacob do things that Kai is not developmentally ready to do and maybe never will be. But, I have to remind myself, that when I do I am not being fair to Jacob, Kai or myself. And I have learned to let it go and enjoy my son.
My real son.
By the way, Kai recently sat on the potty at the age of seven and peed on the floor for the first time. This event showed that he understood the concept of what he was supposed to do when sitting on the potty. This was a wildly exciting event in our family. And it makes me smile when I think about it for more than one reason. I smile because although it looks different when Kai does it than when Jacob does it, this is something that they sometimes have in common.
You know, it’s that seven year-old boy thing.
I think this and I smile. And then I laugh.
How have you overcome the fantasy of what your child may have been to enjoy who your child really is? Please share in the comments below.