What Do You Want Your Child To Be?

I took Noah into the developmental daycare for an evaluation for his acceptance into their program. I think the daycare program would benefit Noah in a multitude of ways. He’s extremely social and being around a cohort of other kids with special needs would be of value. They wanted to do (another) evaluation on Noah. Ah, the life of a parent with a child with Special Health Care Needs. Speech appointment, evaluation, occupational therapy, physical therapy, ENT appointment, blood draw, evaluation, orthotic fitting….the list seems to go on and once it’s finished, it starts over again. We don’t even have it bad considering Noah has no heart or other major organ problems. The evaluations are always such a nice reminder of how much of a delay your child has. They kindly let you know a percentage of delay (i.e 51% delay) and what “age” they are developmentally (i.e your 3 year-old is function as a 18 month-old). Its so great. (sarcasm)

While he was playing and being evaluated by the therapists at the Developmental Daycare, they had me fill out a questionnaire regarding his development, habits, home life etc. Fine, fine, fine…all normal stuff. I got to one question and it asked, “what do you want your child to be when they are older.” Or something of that nature. The thought made me pause. The question seemed to be infinite and finite all at the same time. My head was spinning and I was looking into Noah’s future and back to his birth all at the same time. Like I have any say in what my child should choose to do when he/she gets older, let alone Noah.  What if I put astronaut?  We all know that isn’t going to happen due to his developmental delays and most likely future use of glasses.  It was a weird question to be deliberating.  I just wrote, “himself.”  The next question asked, “what level of schooling do you hope your child will achieve?”  There were boxes to be checked which included, “high school,” “GED,” college,” “doctorate,” etc.  The question made me annoyed.  Obviously I would wish for my child to complete the highest level of education.  Actually, I wish that my child had the option to choose.  In dream land Noah could go to a doctorate level but chooses not to.  But, in our real world that’s not realistic.  And if my child didn’t want to complete a certain level of higher education that should be their choice.  I was left reeling after answering the first question and didn’t even bother to answer the second.  

I’m left with the paradox of pushing your kids to achieve and allowing them to choose their own path.   How much is enough and how much is too much? When are we being helicopter parents vs. Laissez-faire parents? These days being a parent feels like so much more than just raising your kids. How many sports are they in? How many musical instruments do they play? What school are you going to send them to? What ranking is that school? What’s your parenting “style”? Are they skiing yet? Do they have exposure to classical music? What’s their GPA? What are they dressed in? I want so many things for my kids when they grow up. I want them to be adventurous and curious, kind and compassionate, strong-willed and understanding, educated and intelligent, happy and content, accepted for who they are. I would love to be completely unbiased, living in a vacuum, letting my children choose their own career paths. The reality is, there are so many outside pressures. So many people telling us who you should be and what your life should look like. It still happens to me as a 37 year old adult. My main goal is to expose them to as many unique experiences as possible. So long as they enjoy it. Of course we also are biased ourselves and want our kids to enjoy the things we enjoy doing - being outside, skiing, camping, etc. In reality, if they don’t like these things, we will still accept them and love them because of who they are, not what they like to do.

We are many moons away from tackling the question, “what do you want to be when you grow up?” I know it will come sooner than later and the conversation will be vastly different between Noah and Lou. I want them to find something that brings them fulfillment. True fulfillment. Not just in it for the money type of fulfillment because that can only get you so far. As for Noah, I don’t know what he is capable of doing. And that’s the cool thing about having him. He has shattered every idea and every notion that I ever thought about having kids. He has changed our perspective and, in the words of Heather Avis, “shifted our narrative.” I was raised in a very high achieving family. I was pushed. Hard. Pushed to be the best in every aspect of my life. My ableism was celebrated and revered in my family and among peers. So, in the past I definitely could have had a tendency to be a pusher as a parent - do better, score high, run faster, be the best, we love you for your achievements and your position in society. That’s not the case these days. It’s hard to say if having kids broke that or having a child with Down Syndrome broke that. Either way, it’s gone.

What I’ve realized is I want Lou and Noah to know they are loved for simply living. I want them to feel confident making choices and be satisfied being themselves. I don’t ever want to tell Noah he can’t, but the truth is, that may happen one day. It may also happen with Lou. That’s where the rub lies. Telling them their world is open-ended but then also having to tell them some things are not possible because of X,Y, Z. I want to celebrate Noah for living, for being, for doing what makes him smile. I realize that he alone is enough to be celebrated, not his achievements. I love being able to feel that I have no expectations for what either one of my kids wants to choose for a career. I say that in a healthy way, not a defeatist way. People are constantly shouting praise and value about what we can achieve. I wish that would change. You can’t know Noah’s value on paper or a resume. You have to meet him, engage with him, experience him in order to see his value and his purpose. Just because your value can’t be printed on a resume, doesn’t mean it doesn’t exist.

A sad realization I’ve come to is that he is only going to be able to go as far as his limitations will allow, which is a difficult place to sit. I wanted my kids lives to be limitless and feel like they can choose to do and go anywhere they want. That’s not the reality with Noah and that’s very hard to swallow. Because of his developmental delays and physical delays, there will be certain things that are out of his reach. I don’t see that as being negative but being realistic. I never want to limit him in my mind but I also don’t want him to have an unrealistic view of what he can do. It’s like a 4 foot person wanting to slam dunk a basketball. It’s an awesome idea but realistically not going to happen. I don’t know what those things are for Noah yet. I never want to fall prey to him feeling like we don’t think he can so he doesn’t try.

I will encourage him to try anything he wants. He will find and define his own limits, not me. It’s going to be gut wrenching and heart shattering watching him encounter things he can’t do like other kids. I’m trying to remain open minded about his potential and his abilities. There’s still a small chance he will be non-verbal. Not likely, due to the fact that his father can talk to dirt and Noah is non-stop chattering these days. The amazing thing about Noah breaking our celebration of ableism, is that Lou will now have the same benefits. We will celebrate her for trying, not for achieving. We will celebrate who she is instead of what she does. Of course we want them to be successful but I’m glad I have been able to let go of most of my tendencies to push and expect excellence. To get really philosophical, what is the definition of successful? It’s different for everyone and varies from culture to culture. If I were to say it was easy to get here, or it happened over night, I would be full of s**%. It’s been a really, really, extremely difficult process. Everyone wants their kids to “BE” something, but the truth is, Noah is Noah and that is enough.