So far my walk through this special needs parent life has been encouraging, apart from the doctors during my pregnancy. I have been introduced to wonderful mommas and dads who too share the bond of parenting a special needs child. The strength and support that comes from these wonderful parents is unlike anything I’ve ever seen. We are all complete strangers but we will go to bat for each other and our kids. We have a place to vent when family, friends and strangers have offended us with their loving but uneducated comments. For those that have offended, you most likely don’t even know you have, which is okay. We aren’t upset at you, at least I’m not. I’m aware this situation is something you’ve never experienced before and aren’t sure how to say things. It took me lots of tears and silent nights, and research to know how to handle this new life. And I’m still learning. I’ve struggled with writing this blog because I hate offending people or making them feel bad. But I was quickly reminded that I am my child’s advocate and defender first and foremost. So that means I might offend you too, but I do it out of love for my child so please don’t be angry with me. I know you love me and my child.
As all new mothers have experienced the fragile yet life changing moments your child gives you, the feelings of being an inadequate mom sometimes outweigh the joy they give you. At least it does for me. When my baby cries, I stress out like she’s telling me I’m doing something wrong. (I know all babies cry, but I’m telling you mine doesn’t unless she’s very angry and ive done something wrong.) My heart instantly breaks, my eyes fight to hold back the tears, and my mind goes a million miles an hour trying to figure out how to be a better mom.
Here is the first thing you should never say to any mom when their baby is crying: “What are you doing to that baby?” I know you don’t mean to make us feel bad with that question, but in a moment of already high stress and emotions you’re reminding us of how bad of a mom we already feel. Our child is telling us already, we don’t need you to too. Maybe instead ask us how you can help, or just let us deal with it on our own. We would never purposely harm our child or make them cry. And I know you already know that. Just sometimes there isn’t a place for jokes.
When our baby is fussy or upset do not say “ohh, the baby just needs his/her grandpa/grandma/aunty/insert name.” We know you don’t mean to make us feel like we are failing at our jobs, but as a mom I am supposed to be the one who calms her fears or dries her tears. Instead those comments can make us feel like you think you could do a better job than us. Which maybe you could because you’ve been a parent before, but now it’s our turn. But instead, maybe ask if you could hold him/her so we can relax. Chances are I will be more incline to let you have her if I’m not feeling like a bad mom.
“Oh let me do it”. Just like us as new parents shouldn’t help them roll over because they need to learn on their own, we too need to learn how to properly change a diaper, give a bath, feed them, dress them. Teaching is always a better alternative.
This one is too wide of a topic to address each scenario, but just because you did something different when raising us does not mean how we do things is wrong. Each baby and parent is different and we will find what works for us.
When speaking to a parent of a special needs child:
Depending on what diagnosis you are dealing with the questions will be different. Some questions I’ve received regarding Down syndrome have seemed so outrageous to me I’ve realized how uneducated people are, so I can’t get mad. I simply smile and bite my tongue (most of the time).
1. I didn’t know black/Asian/Mexican people could have Down syndrome babies?
• well, surprise they can. It is not an ethnic created “disorder”. It is simply just how the genes mutated during conception. Down Syndrome babies can be white,black,brown, have green eyes or brown eyes, red hair or black hair. They are not limited in their appearance. Society already limits their ability, let’s not limit their traits either.
2. Why doesn’t she look like she has Down syndrome?
• my daughter is 2 months old. She is a new born. She is not a DS new born. She is just a new born. Yes we are lucky enough to not have tons of health problems and spend most of our time in the hospital, but there are “normal” new borns who also spend a lot of time in the hospital. Not all Down syndrome children are the same. Just like not all “normal” people are the same. (And can we find a better common term to describe most of the population? Who determines what’s “normal” anyways. )
3. “She/He looks so downs/autistic/enter diagnosis when she does that ”
• well, no she doesn’t. She looks just like her self. Down syndrome is not who she is or what she looks like. And I personally don’t ever want my daughter hearing that she looks like a certain label. She can look like any one of her family members or her doppelgänger, but that’s it.
4. Her diagnosis does not and should not be all you talk about with her or me or your friends. If she was “normal” you wouldn’t say “my normal child is _______”. She is not and will never be my “Down syndrome child”. She is simply my child. Just like she is simply your granddaughter or niece or friend. Her diagnosis is not a talking point or selling point. We don’t need to warn others she has Down syndrome, it is not a disease or something to caution people on. Heck if they are strangers they don’t even need to know. Again, you wouldn’t tell the store clerk “my normal child is turning 3 months tomorrow”.
If you have said any of these things please do not feel bad. I believe it is my purpose and Gods plan for me to be an educator and advocate for not just my child but all special babies and their parents. Being a mom is already hard work, so let’s make it easier on us parents of a special needs kid and educate our selves and think before we ask absurd questions. I’m also part of this. Down syndrome is not the only genetic disorder. It’s just the only one I’m educated on. I too would ask silly questions regarding things I don’t know if I had never gone through this journey.
I know this is just the beginning of being offended and I will have to get tougher so I don’t break down every time these things happen. But it’s my job to address them and also make it easier for you readers to have a glimpse of what it’s like to be in our shoes.
On a brighter note, If you are apart of Adaline’s army you are part of something bigger than you know. She has the most loving family and support system. Her grandparents are absolutely in love with her and so are her aunts and uncles. And well, her parents love her the most. And all of you are a huge part of her life even though she won’t meet all of you I wish she could. I know she will always feel loved and beautiful because of you. You have made me one happy and thankful momma.