My daughter, Amaya, is 9 and a half years old (the half is very important). She is bright, brilliant and beautiful. She loves girly things such as sparkles and unicorns. But she also is a talented Tae Kwon Do student, loves to play Minecraft and is on a math competition team at school. Did I mention that she had straight A’s the entire school year last year? As you can surely tell, I am enamored. My amazing daughter rocks my world.
But there is something else that makes Amaya incredibly special and different from her peers. Amaya is big sister to a brother with special needs.
I doubt that Amaya remembers a time when Kai wasn’t in her life. They are only two years and eleven days apart in age. And we discovered Kai’s first diagnosis (he has about 8) when he was 18 months old. So Amaya was 3 1/2 at that time. And that means, her memory of her entire life has always included a younger brother with a “special brain.”
We first told Amaya that Kai had a special brain when she started asking questions like, “Why isn’t Kai walking yet? Why isn’t he talking yet? How come my friend’s little brother or sister is doing FILL IN THE BLANK HERE but Kai isn’t?”
We simply said that Kai was born with a brain that is special and different than other people. And so he may or may not be able to do these things. And that this was OK. And that we loved him just the way he was. And little Amaya just went with our flow. “OK!” she said. And it was no big thing.
As time went on, the differences became more obvious. Kai was stimming. He was choking at mealtimes. He still wasn’t walking. Or talking. Amaya would explain to anyone who looked at Kai (and people were starting to, because he was starting to look very different) that Kai had a special brain and that he just did things a bit differently. Her friends were usually very accepting once the brain situation was explained. Their parents, well, they had a harder time with it. But most of them came around.
We (Mom and Dad) got shirts that said #TEAMKAI on them. Amaya wanted to know where the #TEAMAMAYA shirts were. We tried to explain but that one was a little tougher. As she matured, the question changed to, where was Amaya’s #TEAMKAI shirt? She was starting to understand.
Eventually, she got a little jealous. He was getting a LOT of attention and even though we always made time for her, sometimes it was hard. We were often focused on Kai, his rotation of EIGHT different therapists that traipsed through the house on a weekly basis and his tiniest achievements created an uproar of celebration. Why was his brain SPECIAL? Wasn’t Amaya’s brain SPECIAL too?
In a moment of deep sadness and at a loss for a better explanation, I had to explain that while we used the term special, we could also use the term broken (I was trying to SIMPLIFY to a level that young Amaya could understand and I hated saying it that way but she needed to understand). Kai’s brain was broken. It didn’t work like our brains worked (to this day, that statement makes me ITCH but I did the best I could. After all, what one person says is broken, another person could say is fabulously different). Amaya seemed to really grasp the situation after this explanation.
As time has progressed, Amaya has become an incredible support for Kai. Kai is a side by side player, which suits Amaya just fine. They do their separate things in the same room and they coexist happily. Amaya is a caregiver for Kai. She takes his tablet away at bedtime and tells him, “Tablets all done,” in a sing-song voice. Kai sees this as a sign that it is time for bed. She guides him to the places we need him to go, runs to grab things from him that he shouldn’t have, steers him out of the bathroom where he likes to play and make a mess and she does it all with kindness and a sense of humor.
Amaya often has to give up a lot because of Kai. Even though she is 9 1/2 and Kai is 7 1/2, we cannot go to a movie because Kai is developmentally about 18 months to two years old and cannot sit through one. Amaya needs to either not have small toys or hide them because Kai could choke on them. Sometimes we don’t go to events because Kai wouldn’t do well at them. Or we go but leave early. Kai will steal cookies off of her plate. Amaya stays calm because the house rule is that if Kai steals food off of your plate, you get replacement food, no questions asked. She runs for bags for dirty, poopy diapers and takes the full ones to the trash. She tolerates the spectacle that Kai makes when we bring him to the Dojo for her karate class and he is loud or lays on the floor. And she knows that this is part of living the special needs life.
Even though Amaya is so young, we had to have a really hard conversation. Because eventually, her Daddy and I will die. This is life. And we need her to care for Kai. She does have three adult siblings (I married a man with three kids and he had custody of them) and the oldest is the first caregiver assigned. But eventually, in her twenties, Amaya will take on a stronger role. When asked, she agreed to this immediately and sometimes questions how she will handle this. I have told her that I will make sure she has enough money and lots of instructions and that her siblings will support her. But it’s a lot to ask. She didn’t commit to having this responsibility when her father and I decided to have a baby, we did. But, we have no choice. We won’t live forever and we expect Kai to outlive us. It weighs heavily on my heart. But there it is.
Today, Amaya had no school. Kai did. They are on different schedules because Kai goes to a completely special needs campus (no inclusion for my low-functioning angel and that is the right placement for him). On days such as this, where Kai is otherwise occupied, we try to do things together that we can’t do with Kai. We went to the Halloween store and picked out the accessories for Amaya’s Halloween costume. We went to a movie, played games in an arcade and went out to lunch. Just Daddy, Mommy and Amaya. It is a glimpse of what it would have been like had we never started living the special needs life. Just doing normal fun things without having to worry how Kai will handle them. How we will adapt our day for him. If we would have to leave early. And, of course, the usual stares in public are gone during this time. We just blend in.
If I sound sad about my life, I would like to let you in on a little secret. I am not. I missed Kai the entire day. I love our special needs life. But, while Amaya doesn’t know any different, I do. And, sometimes, we need to carve out special time and treat this amazing daughter, with the huge heart, incredible brain and talented, creative soul, to a day where it’s all about her. She deserves it.
My daughter is an incredible Special Needs sibling. I am so honored and awed that I have been given such an amazing girl.
Do you have a someone in your life that is an incredible Special Needs sibling? Please share in the comments below.
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