When Noah was a baby he cried for 18 hours out of 24. He was so distraught as a baby. I'd bounce with him on an exercise ball to offer him vestibular input, listen to the radio in a desperate attempt to soothe, walk with him, hold him, rock him in my arms, lay him in a bouncy. I'd do anything and everything and yet he still cried. The first year was hard. Until one day he discovered the world of Elmo and Sesame Street and just like that a light bulb went off for him and we found something that offered him comfort. The TV. I thought I was going to lose my mind. You could so much as smile at me that first year and I would have broken down into hysterical tears. I was overtired, feeling like I was failing, trying to navigate a world of therapies that I was unfamiliar with, a new mom to a child with special needs and dealing with the most distraught baby that you could ever imagine.
is ten. He still cries. Not the same kind of cry as a baby. But
still cries and frequently. As a non-verbal child, it's often his only
way of communicating distress, pain, disagreement, agitation, or when
he's ready to leave somewhere, or even when he's ready to go and I'm not
moving fast enough for him. There are lots of reason he cries. Most
of which I know, and some that I'm still learning. I've never been a
cry it out method mom. Even for my typical child, Luke. To me when a
child cries, that means that they need you in some way. And comfort has
always been what my instinct has told me I need to do. It's still
like that if either of my children cries.
is cognitively very aware. He understands everything although he's
trapped in a body that is physically limited and challenging in every
single way possible. Yet, he still is learning to navigate an AAC
device, but even with a device - he's always going to have to rely on
communicating with us through facial expressions, through vocalization
tone and sounds, and through moods and emotions (example, being happy,
sad or angry). Non-verbal children just communicate very differently.
will frequently have meltdowns or get angry and cry if something is
wrong - like his movie ended and I need to restart it, or if he's out of
coloring book pages to shred, or if his brother took a toy away from
him, if he needs to be changed, or if he's pissed off that his therapist
was scheduled to be here and she is sick or can't come for whatever
reason, or he doesn't get Chick-Fil-A on Thursdays.
by meltdown it's the most heartbreaking cry you can imagine. The kind
that penetrates your soul where you just ache to make it all better.
Crying it out or punishing Noah for trying to be self-expressive to me
has always felt like a cruel approach. Not to mention that if I don't
find a way to soothe Noah or make whatever it is that is troubling him
better, he could frenzy himself so bad into vomiting, chocking and
aspirating because he gets so worked up. Being upset to Noah poses a
safety risk to himself.
also can't negotiate with a child like Noah like I can with his little
brother Luke. I can't make deals, or bribe with treats or toys - it's
an entirely different ball game. A lot of parents take the approach
disabled or not that kids are kids and both deserve to have the same set
of punishments or rewards. But raising two very differently-abled
children I can tell you that rewards and punishments are not even close
to being the same between a disabled child and a typical child. Noah is
by definition severely disabled. He can't walk, talk, crawl, sit or
self-feed. I can't say to him you deserve to sit in a corner, or be
banished to your room until you chill out, calm down or quit crying.
Likewise, there isn't anything Noah has done wrong other than try to
communicate to me that something is wrong and he's trying to tell me
what it is. That's not a crime, never will be. Nor do I view it as any
form of manipulation on his part. He relies on all of us - the entire
family unit to assist him with his needs, his wants, and to help him be
comfortable, healthy and happy.
punish Noah for trying to vocalize a problem he is having would be a
tremendous disservice to encouraging him to find ways to communicate
with us - even if it's in the form of crying or screaming he needs to
find ways to get our attention. As Noah grew older, and the crying
continued way past that of a normal age of a baby and toddler, I would
stop and think about how I'd feel if it were me. And I were trapped in
this body, fully aware and completely unable to tell someone that I
needed something or that I was upset. And I would look at him with such
admiration for not screaming every single second of the day because
damn it's got to be hard to be him. And he's really a joyful kid for
the majority of the day. He has learned the art of using the crying and
screaming when he needs to use it. It's not his state of perpetual
sometimes Noah is like the rest of us - where he just needs to be held,
reassured and loved on and consoled through a rough emotional moment. I
never want to find ways to discourage him from using any form of
communication he needs - even if that is crying and screaming. I don't
see Noah as being spoiled, I don't see myself as encouraging bad
behavior from him, and I don't see myself as a parent who is failing him
because I'm teaching him that he can't always get his way. Sometimes a
child like Noah simply does need to get their way. And that's okay.
There's nothing at all wrong with that. He's always going to be fully
dependent on someone his entire life. Promoting all forms of
communication in our house has always been our goal. And when Noah
cries, it's our job to figure out why (because there is always a reason
behind it), and help him through the moment.
might look to an outsider like we're not disciplining our child, or
that we are promoting them acting out. Know that crying and screaming
for many non-verbal children is just another way of communicating. Trust
that we know what we're doing a special needs parents.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.