Tag Archives: disability

When My Daughter Asked, “Do You Hope This Baby is ‘Normal’?”

I have yet to share our exciting news on the blog, and if you’ve followed us on Facebook, you already know…Braxton is going to be a big brother!! We’re expecting a baby girl in January! ❤

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Several years ago, the thought of having another baby after all we’d been through with Braxton was simply out of the question. I was scared and nervous to even entertain the thought. As friends of ours who also have children with special needs began expecting a child, I started to think more about the possibility. I asked them questions about how they felt, if they were doing more in-depth genetic testing from the very beginning this time, and ultimately admired from afar. At that point in time, I had decided that *if* we did get pregnant again, that I wasn’t going to be blindsided this time. I was going to ask for more testing up front so we would know what to expect this time.  Going through an uneventful pregnancy and being told something is wrong with your baby moments after birth and then waiting nearly 2 years for answers is an experience I never wanted to go through again.

But, this summer, it happened. I found out I was pregnant. We had been talking about having another baby for quite some time and finally our prayer was answered.  At my first appointment, I was 8 weeks along, and the doctor explained she wanted to go through everything as if it were my first pregnancy to be sure she didn’t forget something or assume I knew something I didn’t.  She began explaining our options for the standard “First Trimester Screen.” She told us about the standard testing they have been doing for years and explained the test and it’s efficacy in determining if a child will be born with Down Syndrome. She went on to explain that there is a new test that can predict with approximately 96% accuracy and will also tell you the baby’s gender by 12 weeks. And there is another test that can check for a variety of other conditions as well. I looked over to my husband, and knew we were on the same page.

When we spoke after the appointment, my husband asked if I wanted to do the in-depth testing, and surprisingly, I said no. He then told me he felt the same way. We decided that knowing wouldn’t change anything. We’ve already been on the journey, we’ve already got the resources and the support. If, by chance, we found ourselves on the journey again, we wouldn’t be blindsided this time. This time, we were ready. And finding out wouldn’t change whether or not we would keep the baby or make us love her any less. I realized that we were in a very different place than we were several years ago, when we thought we’d ask for every test under the sun. I knew that with my husband the systems we had in place, there was nothing we couldn’t face.

However, it wasn’t until several weeks later that I realized that not everyone was on the same page. Disability affects the whole family. I know this. Disability is a part of many conversations in our household and my daughter is very attuned to the issues we face with Braxton and more recently, with her as well. She was diagnosed with ADHD in December of 2014, and while some people may not see that as a “special need” or a “disability,” there have been some aspects of the condition that have been truly debilitating for her and we have been working hard to get her the support she needs medically and in school. She is very aware of the difficulties she’s faced and often feels like an outsider, despite our best efforts to build her up and make sure she is included.

Some time after I told her she was going to be a big sister again, she came up to me while I was cooking and said, “Mom, do you think the baby is going to be born like Braxton or like me?”  At first I thought she was asking if the baby was a boy or a girl, or maybe if the baby would have her tanned skin or Braxton’s light skin. “What do you mean?” I asked. “Do you think the baby will have a disability like Braxton? Or do you think she will have ADHD like me?”  I was completely caught off guard and said something like “Oh, don’t you worry about that. Baby is going to be just fine.” She seemed content with that answer and scampered off to watch TV.

She’s asked me some variation of this question at least 4 more times and every time, I am without the right words to say. Last night, again “Mom, Do you hope this baby is normal when she’s born?” Again, I am less than eloquent. “Baby girl, we are all born with our own special gifts, talents, and difficulties. We don’t know what to expect when the baby is born, but I promise she’s going to be okay.”

I have struggled with the disability conversation with my daughter from the beginning. How do I tell her about her brother? How do I make sure she doesn’t feel left out? What do I do when she thinks all the attention is on him and not her? We have had some struggles but for the most part I seemed to have found the right words and she has been such a huge advocate for herself and for her brother. But, now, I am at a loss again. Do I reassure her that the baby will be fine? Or will that make her feel inferior because the baby is “normal” and she’s got a diagnosis?  I have tried to tell her that there is no such thing as “normal,” that we are all born with our own special quirks and that’s what makes us all so unique.

For now, she is appeased. She is excited to meet her sister. She kisses my belly every night and talks to her sister often. Hopefully I can find the right words to put my sweet girl at ease the next time she asks. Hopefully I can help her find her way to a place of acceptance and help her move past whatever mountain seems to be standing in her way.

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You Shouldn’t Wait for it to Offend You Before You Take a Stand

Today is the official day of awareness for the Spread the Word to End the Word campaign.

Per usual, I have been reading posts from various bloggers who I often read, and today a particular post struck a nerve with me – not in a bad way. The author wrote You’re not offended until it affects you as a response to someone who simply does not understand why the word “retard” can cause one to get so “worked up.”

I paused for a moment and let out a not-so-silent Amen! to myself. And then, I paused once more as I thought about my experience and how true that was for me personally. Which then led to me to think, “Wow, it’s such a shame that it took disability directly impacting my life before I changed my mindset.” Finally, I realized how true this is for MOST people.

So many people vehemently defend their “right” to say the r-word by citing their right to free speech among other erroneous excuses (see the article linked above), but what all those excuses boil down to is the fact that they likely have zero experience with people who have intellectual disabilities so they don’t understand the “big deal”.

They don’t know what it’s like to see a loved one struggle with the most basic of tasks, to wonder if their child will ever speak, to wonder if their child will ever walk without a limp, to wonder if their child will ever walk at all. They don’t know the fear in our hearts when we send our child to school for the first time and HOPE that he will be accepted by his peers. Will they tease him because he doesn’t walk fast enough? Or because her speech is slow and difficult to understand? Will they point and laugh because he rides the “short bus”? Will they simply call her a “retard” and walk away?

If these thoughts have never crossed your mind, you’ve probably never second-guessed your “right” to say the r-word either, but that still doesn’t make it okay for you to use the word. When we (parents of children with disabilities) correct you or bring it to your attention, it’s not to embarrass you or chastise you – it’s to educate you because we know you might not have had a clue how that word affects us and our children. We know because we’ve been you.

So many of us grew up using the r-word and never gave it a second thought. But then we grew up and had a child with a disability and “retarded” became part of our child’s diagnosis.  Suddenly, the word lost all of it’s hilarity. I was ashamed and embarrassed that I ever used that word so frivolously. Suddenly, the word had real meaning and it did NOT mean stupid, pathetic, loser, less than, ridiculous or any other word the r-word often replaces. With a single word, our dreams changed, our world turned upside down, and our instinct to protect our child from ever hearing the word kicked in. Suddenly, it became a very “big deal” and it was no longer “just a word.”

You’re not offended until it affects you.

Why should disability have to affect any of us at all before we are offended by the r-word?  I love my child unconditionally with no end, but I would not wish any of the struggles we have had on anyone, simply so that they understand the true significance of a word. Don’t wait until it is too late. 1 in 10 Americans are affected by a Rare Disease. 1 in 68 children have been diagnosed with Autism. The prevalence of other disabilities is just as great. Chances are, you DO know someone with a disability. They may not be YOUR child or YOUR family, but they are human and they have feelings and they deserve your respect. The r-word hurts an entire population of people, just as racial epithets do. It does not belong in our vocabulary and should no longer have a place in our culture. Find the compassion in your heart and hear my words. I don’t want you to know the hurt I have before this issue matters to you. Take a stand NOW. If one day, you learn your child has an intellectual disability you will be spared the shame and embarrassment I faced when that word became more than “just a word.”

 

Take the pledge now and Spread the Word to End the Word.

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The Moments When Disability Becomes ‘Real’

So I’m sitting here waiting for a representative from the DARS Division of Blind Services (DBS) to arrive for our scheduled assessment. I received the call a few weeks ago and the representative briefly told me about all of the wonderful services and programs the DBS offers. There were many that I thought would be very beneficial for our family. She performed a quick “screening” to see if we would be eligible for services, but it was a mere formality, “With that CVI diagnosis, you’re sure to qualify.” I was excited to schedule the appointment and couldn’t wait to learn more.

But after I hung up the phone, a strange feeling swept over me. On the one hand, I was excited about the additional services, but on the other I realized that my child was now classified as “so disabled” that he qualified for all of these extra services. “With that CVI diagnosis, you’re sure to qualify.”

Not too long before this call, I received a notice that Braxton had reached the top of waiting list for the Deafblind with Multiple Disabilities (DBMD) Medicaid Waiver. If eligible for this waiver, Braxton could qualify for Medicaid on his own without taking in to account his parent’s income, which could disqualify him from receiving services. Again, excitement for the new services and opportunities, but sadness because of the “classification.”

BraxtonWhen I look at Braxton, I don’t see “disabled.” And I’m sure it is the same for nearly all other parents of children with special needs.

I see a tenacious young boy learning to exercise his independence and autonomy. A little boy who defies me when I tell him not to chew on his sister’s shoe by clamping down tighter or throwing the shoe across the room. Or even more developmentally appropriate, when he refuses to put it down until I walk up to him and he sets it down and tries to act like he never had it in the first place.

I see wide eyes and a bright smile that fill my heart with so much joy I could burst.

I see a wobbly walking toddler through tears of joy because ‘they’ told me he might not ever walk.

I see a child full of love who walks as fast as he can just to get a hug. Little hands that pull me back and squeeze ever so tightly because you can’t just get one hug.

I see wonderful every time I look at him, but every once in a while, that ugly feeling washes over me when his disability becomes real and unavoidable due to our circumstances.

When I watch him wobble across the room while a friend’s 2-year-old is running around, jumping on furniture, “are you SURE you want a ‘normal’ 3-year-old?” runs through my head.

When I finally gave in and asked our pediatrician to fill out the forms for a handicap placard; And not the temporary red one, the permanent blue one.

All the way back to the NICU when the doctor told us he would need a feeding tube and he might not ever eat on his own. Agreeing to the tube meant he was going to be different for the rest of his life. The tube meant he would not ever be ‘normal.’ What would people say? Would he ever be able to do things like a ‘regular’ kid?

Answering developmental questionnaires and marking “no” for all the things he can’t do.

When sitting in his first school ARD and there was no “fight” for services, because there was no denying that he needed them. Only, I didn’t recognize there was no fight until my ‘typical’ daughter needed help and it didn’t go near as smoothly because her disability didn’t affect her enough.

The day I finally parked in a handicap accessible space only to fear that someone would question me and therefore make me tell them, show them, “Look, look how disabled he is! The placard is for him.”

Perhaps it’s not that his disability is any more real in these moments than it is at any given time, but more so the fact that I have to accept it and recognize the ways in which it permeates our lives that hurts me so.

In three years, I feel like we have all come so far and we are in a good place, a place of acceptance and adjusted to what is ‘normal’ for us, so when these feelings intrude, it always surprises me. But, I recognize that grief is cyclical in nature. We are constantly moving through the stages of grief, sometimes staying in one stage for very long periods of times, which lulls us into a false sense of security until something jolts us back in to active grief.

I also realize that we are still very early in our journey and this feeling is only going to continue as the years pass. With every birthday, every milestone, every IEP Meeting, as I watch him walk next to his peers, as I dream about hearing his voice and awake only to find that he still has no words for me.

But then, there is that smile; the smile that brings me up from the depths of my sadness and self-pity.

That sweet, charismatic, wonderful smile as he turns his head like a bird to make sure I’m looking right in his eyes as I lay in bed and then he comes in for a hug and lays his head so sweetly on my shoulder and squeezes me tight. It is in those moments that the labels and services and countless appointments no longer matter. When wonderful returns and if only for a moment, disability disappears.

 

And with that there is a knock at the door. I squeeze my boy one more time and take a deep breath.

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Spread The Word to End The Word

So today is “Spread the Word to End the Word” What word might that be? The “r-word,” you know, “retard.” Although this post doesn’t specifically deal with the “r-word,” it’s about how words can hurt and ultimately has the same underlying goal: RESPECT! People of ALL abilities deserve respect no matter what. I will probably write more on the “r-word” later, but for now re-read this post I wrote last year about respect and tolerance for children with disabilities.

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If there was ever a question I absolutely abhor hearing, that would be the one. [Notice, I used abhor, not hate, not dislike, but abhor – extreme repugnance or aversion; to detest utterly; loathe – get the idea?] This one simple question can cause so much damage and most don’t even know it.

Let me first make clear, I don’t care what other people think or have to say about my kid. It doesn’t make US treat him any differently, love him any less, or change his plan of care. Kids, however, are another story. Sure, he’s not old enough now to understand the inquisitive eyes, but one day he’ll see just how cruel the world is and wonder what’s really going on. We took Braxton out a few times over the weekend after his surgery, and you would NOT believe the ugly looks he got. While I may just…

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What’s WRONG with him?

If there was ever a question I absolutely abhor hearing, that would be the one. [Notice, I used abhor, not hate, not dislike, but abhor – extreme repugnance or aversion; to detest utterly; loathe – get the idea?] This one simple question can cause so much damage and most don’t even know it.

Let me first make clear, I don’t care what other people think or have to say about my kid. It doesn’t make US treat him any differently, love him any less, or change his plan of care. Kids, however, are another story. Sure, he’s not old enough now to understand the inquisitive eyes, but one day he’ll see just how cruel the world is and wonder what’s really going on. We took Braxton out a few times over the weekend after his surgery, and you would NOT believe the ugly looks he got. While I may just be mostly venting here, maybe you can take away a lesson in tact and teaching yourself or your children how to really be tolerant of people who are different. Be it a different race, different religion, or different abilities, everyone deserves to be treated equally.

At first glance, most wouldn’t know that Braxton has any kind of special needs. Add on a g-tube extension, some hearing aids and some bandages covering his hands up to his elbows and voila, Braxton is a freak of nature. At least that’s what so many make it seem like when we take Braxton out. The stares, the judgmental eyes, the gaping jaws, the whispering conversation that ceases the second inadvertent eye contact is made; they are all silently questioning “What’s wrong with that kid?” For the brave few who actually ask, my skin just crawls and I literally want to punch them in the face or at the very least give them the verbal lashing they deserve for asking such a loaded question. Sure, it seems innocent enough, but do you know what the question entails? “What’s WRONG with him?” There it is, that glaring, nasty word…WRONG. It has such a negative connotation and carries with it so much judgment.

Dictionary.com defines “Wrong:”

Wrong: adjective 1. not in accordance with what is morally right or good 2. deviating from truth or fact; erroneous 3. not correct in action, judgment, opinion, method, etc., as a person; 4. not proper or usual; not in accordance with requirements or recommended practice 5. out of order; awry; amiss — noun 8. that which is wrong, or not in accordance with morality, goodness, or truth; evil

Synonyms include: bad, evil, wicked, sinful, immoral, iniquitous, reprehensible, crooked, inaccurate, incorrect, false, untrue, mistaken. improper, unsuitable. misdoing, wickedness, sin, vice, maltreat, abuse, oppress, cheat, defraud, dishonor.

While some may have good intentions, there is nothing thoughtful about any part of that definition. Particularly, the parts about not being in accordance with what is morally right or good. So, to ask “What’s WRONG?” [whether aloud or with questioning eyes] implies that there is something NOT right about my son, something that defies morality and a particular way of life. Implies that there IS in fact a “right” way to be and my son isn’t it. WRONG: it’s such a harsh and judgmental word that has no business being used in the same sentence with my son, or with anyone who is “different” for that matter. Special needs children are NOT freaks of nature. There is no need to stare, point, snicker, whisper, or degrade them simply because they are not what you would consider “normal.” What’s “normal” anyway? It’s a preconceived notion that may differ for everyone based on life experience. Your “normal” is not at all my “normal” and NEITHER of them is more right than the other. We should all learn to be tolerant of one another. Just because you don’t understand another’s way of life or disability doesn’t mean you should belittle them or treat them with complete disrespect, they are PEOPLE. People with the exact same feelings and emotions that you have, and you probably wouldn’t like it very much if someone went around looking at you crazy or questioning whether or not your existence was in accordance with morality.

*steps off soapbox* Carry on.

Does it look like there is anything “Wrong” with him? Didn’t think so.

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