My Fears Found in the "Basement"

EDITOR'S NOTE: This post originally appeared on Our Unexpected Journey on September 26, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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On Saturday Mike was organizing our basement and he came across this book that I had partially filled out before I even had kids, on December 12, 1999 to be exact. He started flipping through the pages and then he came to this page and read it out loud to me (this is just too crazy people):

It says: Your greatest fear about having children...

WOW. Did I actually write that? When I heard him read it I said "What!" "I really wrote that?" "I can't believe I wrote that!" I think at first when I heard the word "retarded" I was floored but we'll get to that in a minute.

So the fear about a child being sick-hmmm...for those of you that don't know, Ainsley was very sick when she was born. I wrote about it in my very first post but she had something called Nonimmune hydrops fetalis and the doctors told us that 70% of babies with hydrops do not make it out of the O.R.- meaning they don't survive birth. If you go on the internet (which of course I did while Ainsley was in the NICU-bad, bad, bad) the mortality rate for hydrops is in the high 90's, percentage wise. So there's one of my fears that came true (not to say of course that one of them won't get sick like that again-but Lord willing they won't).

Now onto that other one. The fear that my child would be retarded. {Taking a deep breath in}There's two parts to this that get to me. 1) This word I used bothers me. It bothers me because I don't know why I actually wrote retarded. I hate that word and I hate when people say that word and I hate to think about Bennett in that way but was I writing it in the terms that the medical community uses it as in "mentally retarded" or did I just used to throw that word around like it was nothing? I really don't think it was in my common vocabulary, I just really don't and I'm ashamed if it was. And 2) Once again a fear I had, a fear that I actually wrote down... (I realize the fact that having the fear that your child will have a mental disability or any disability is not uncommon, but to write it down and then to have it happen-WOW) ...happened. In the "basement" of my heart I had these real fears and totally forgot about them until Mike found this book. So what's going on here?

Recently I remember reading the status of a friend on facebook: "If you want to hear God laugh, tell him your plans" (thanks Susan)- I laughed when I read that. Now, this can seem a little harsh but I don't think it's meant to be and I don't see God up there laughing at us and our little plans in life and destroying them (or so we think) or laughing at our fears and then throwing them right in our face. The way I look at it is simple: He has his plans, sometimes they go right in line with ours and sometimes they don't and sometimes we just have to face our fears head on to realize that with Him we don't have to be so afraid. The above saying is kind of like the one about "Don't ask God for patience or he'll give you something to be patient about" and I'm not saying "You better not write down or voice your fears because watch out, God will allow them to happen". God isn't like this. But I do think that sometimes what we think we fear most, God has a way of showing us that maybe it's not so much to fear and I guess in my case it just so happens that he wanted to show me them directly.:)

And I do believe "God doesn't give us more than we can handle" but sometimes I think he does give us more than we think we can handle. Like God didn't give me a baby Bennett, a 5 year old Bennett, a 15 year old Bennett and a 30 year old Bennett- now that would be too much to handle. But we've all had times where we think "this is enough, I can't take any more". So by giving us more than we think we can handle, he's not punishing us but maybe it's so we will come to Him because if every thing were just bearable, just enough where we felt we could handle it, we'd never look to Him and we'd never be able to experience Him handling our fears or trials with us-head on.

I'm still sitting here amazed that I actually wrote down those two fears and they actually happened, they literally happened just as I had feared (and yes I cringe at the thought of Bennett being retarded because this word to me is very hurtful and I will NEVER refer to him in that way). Am I angry that these fears happened? No. Are there times and will there be times (specifically with Bennett) that I wish they didn't happen-yeah, I think so. But you know, those aren't my fears any more. And frankly I don't know what my fears would be now. I'm just living and trying not to live in fear and I think that's what God wants.

What Do You Say?

EDITOR'S NOTE: This post originally appeared on Days With Dylan on April 19, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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So...

A couple of weeks ago I took Dylan to the pediatrician for a rash concern. This is our new pediatrician's office - you know - the one who specializes in kiddos with developmental delays? Well, I had kind of an awkward experience. The nurse who saw us is not Dylan's primary care physician, but rather was the only one available on such short notice. Anyway....throughout the entire visit, I was really just not getting great vibes from her. She was a know-it-all type and honestly, I could have done without her "extra jokey" personality. Yeah, so I wasn't exactly in the best mood as we had already had a long medical kind of day, but still. I was looking for a bit more professionalism, I suppose.

The nurse basically blew me off about the rash and told me to stop feeding Dylan peaches, change my detergent and change D's bath soap. Thank you very much.

Then, she looked up at me and said, "Hey. He doesn't have those simian creases.". I said, "Yes, I know. I don't know why. He just...yeah. I don't know.". She then proceeded to point out all of Dylan's "Down syndrome characteristics". "See his eyes? The shape? Then look how they are spaced far apart. Also, his ears are low. His arms are short and his hands are small and pudgy. Also the tone. Look...see?". She then picked up his arm and let it flop to the side and said, "Actually, his isn't bad at all. Usually Down syndrome kids (UGH!!) have much lower tone than that.".

I was standing there. So still. Looking at her. Probably with my mouth open, just....absolutely speechless.

But here is a censored version about what I was thinking: Honestly? How RUDE can you be? To stand there and pick apart my baby like that! This is my baby. My son.

Ugh. I am tearing up just thinking about it.

Then, she gave me a slip of paper to bring to the receptionist to check out. I looked at it and here is what it said:

Problem: Contact Dermatitis

Additional Problems: Down's

Down's. Down's? Are you kidding me? Down's? A. of all - it's not freaking Down's (it's Down, lady!!). And B. - we were not there because of Down syndrome. We were there because of a rash. And what does "Down's" have to do with that?! Sheesh.

Ok...whew. Anywhoo...

Fast forward to Friday.

I was on a walk with Cass and Dylan. We approached a woman who we see all of the time walking with her little dog. We stopped to chat for a bit. It was getting close to 11:30 so I told her that we had to get going as it was almost time for Dylan's PT lesson. She got a worried look on her face and said, "Oh no! Why? What happened?". I responded very casually (even though I was actually quite nervous as I still feel...what's the word...awkward, I guess, telling people that Dylan has Down syndrome) "Oh, nothing is wrong. I'm not sure if I've mentioned this to you before (I knew I hadn't), but Dylan has Down syndrome and...". I stopped for she was no longer listening. She had taken off her sunglasses, leaned in really close to Dylan's face, studied him for a few seconds and turned to me and said, "Huh. He doesn't look like a Down's child.".

Um.

So, what is the point of all of this rambling?

What I am wondering from all of you lovely ladies who are traveling this same path, is, what do you do or say when people blurt out...um...how shall I put this? Rude, ignorant and well...not so empathetic things? Do you just get used to it after a while? I know that I am overly sensitive as it is. And, I mean, I know that these people are not intentionally trying to hurt my (and Dylan's!) feelings. I do know that. And I also realize that part of the problem is that people simply do not know what to say. I try to think about what I would have said if someone told me that their baby had Down syndrome. I don't know what I would have said before having Dylan in my life. I really don't. But jeez, I would like to think that it would have been something a bit more...compassionate....than some of the things that I get now.

So, what do you say when you get the random, ignorant comment?

And...do you mind if I steal it for the next time?! : )

Apparently, I'm a Pollyanna

EDITOR'S NOTE: This post originally appeared on Simeon's Trail on November 3, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Last week in the UK, news broke that women were experiencing more Down syndrome pregnancies, but fewer births. The increase in pregnancies were related to more women delaying childbearing. The decrease in births were related to "better" screening procedures with more terminations. In reading the articles related to these findings, I found myself reading the comments sections...again (when will I get a clue?).

Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.

There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)

I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.

Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?

Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!

Not My Proudest Moment

EDITOR'S NOTE: This post originally appeared on Genetically Enhanced on August 20, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Let me first set the stage for this incident...

• It was Sheridan's first birthday.
  
• Also, on that day, I found out that Sheridan's early start services will (potentially) no longer be covered by the State of California due to a change in the Lanterman Act that now requires ALL persons receiving assistance related to a disability to first use up whatever your insurance will pay for. And I found out that even if those services are not the same quality, or have a longer wait list, etc. etc. we still cannot get the services he is entitled to - needs! - with the same therapists who have expertise in birth to three (I'm oversimplifying here, and every person's experience will be different depending on their insurance coverage).
• So I found out that I will have to fight both our early start regional center AND the insurance company at the same time to ensure Sheridan retains his services (doesn't everybody know fighting a war on two fronts is disasterous?).
  
• AND I found out that the speech therapist who told me Sheridan was ready for weekly ST did not request that in her report. Because "he's so young, we've never requested it for anybody his age before, he'd be the first." So, they are letting his chronological age determine his services rather than his developmental readiness? So, I had a rather, um, assertive conversation with her.
• And the shot in my rear end the doctor gave me to help with my severe back pain was wearing off as I was caring my 19 pound son on my hip.

So, with all that in one day, I'm at a local store and...

A man likely in his mid-twenties was behind me in the checkout line. He commented on how striking Sheridan looked.

++++++++++

He's really cute. And there's something really different about his look. He looks exotic.

Oh, thank you!
His eyes are really interesting. His features are really neat. Is he exotic?

[Okay, not sure exactly what he meant by all this exotic talk, but whatever.]
Well, he has Down syndrome and maybe you're noticing some of his unique features?

Oh, wow. So is he retarded or what? You know, how they are all retards?

No more f***ing retarded than you.

++++++++++

Sigh.

I told you it was not my proudest moment.

No matter how exhausted, no matter how frustrated, no matter how difficult being an advocate is at any given moment... it's the life we all live, breathe, sleep, eat, and LOVE.

And I feel like I let Sheridan down. I feel like I let people with special needs down. I know I let myself down... I really struggle sometimes with giving myself permission to not fight every fight.

But I feel it is my duty, my right, my heart's desire, my son's need that I fight. So I'm really regretting that I let my gaurd down and got so defensive on this one. This man's comments came from a place of ignorance, and I have the ability to at least try to fix that.

I still don't know exactly why I had the response that I did (although I do have a sarcastic streak). Maybe I was being the quintessential Mama Bear protecting her cub. Maybe I was just angry that somebody called my son a retard on his first birthday. To his face. Maybe I felt ganged up on after all the other stuff that day. But we all face "stuff" everyday, and will face plenty more and bigger "stuff" in the future.

I just feel the need to apologize. So, I'm sorry for letting my community down. And I'm sorry for letting Sheridan down.

I know I have a lot of fight in me. I know I'm a strong advocate for both my son and other people with special needs. I guess I just need to work on allowing myself to not feel that every fight is my responsibility.

Connections and Retraining the Inner Snark

EDITOR'S NOTE: This post originally appeared on Only Who I Am on July 31, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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I recently had someone at school look at E and say “is he down?”.
A lot of things ran through my head. Hm, is he down? Well, he was down for a nap, but now he woke up because two kids skipped by, talking excitedly. Is he down? No, he’s feeling rather chipper today, thank you. But I knew what she wanted to know – does he have Down syndrome? Do I just repeat the question for her using appropriate language, or just answer it?
In this case I said “Does he have Down syndrome? Yes, he does.” It was someone who works at the school and there was no reason I needed to burn a bridge there, or cause anyone embarrassment. She was asking because her brother had Down syndrome and she clearly recognized it on E’s face. We talked a little bit about her brother – he has already passed away, and it quite obviously still pained her, so we didn’t dwell on that. To me, in hindsight, it was grand to make a connection with someone associated with the school and have her know what a wonder people with Down syndrome are, because in my world, that’s one more solid brick in the foundation that is going to support my case for E attending the same school as his brother.
And just this week a young person looked at E and quietly said “My cousin had Down syndrome.” I didn’t know what to say, because I heard her hushed tone and the use of the past tense. Had he died? Why had he died? When did he die? And do I really want to get into this with a young person who seems very saddened by the subject? I honestly had no clue where to go with her comment. I smiled at her, because I did appreciate her comment, but I was at a loss, and did not take the conversation any further.
Since E was born, I’ve been busy stocking my arsenal of witty and snarky responses to comments I am expecting to get. Like the above comments to correct someone’s use of inappropriate language to describe his syndrome. Like when he does something clever: “He’s retarded, not stupid.” If he has trouble communicating or is not acting “age-appropriate” when he’s older: “He has Down syndrome, what’s your excuse?” – or my favorite, which is on a t-shirt that made me hoot with laughter the first time I saw it: “It’s called Down syndrome, you f*ing retard!”. (I am crossing my fingers that I will someday be lucky enough to receive sentiment this as a sweet, adorable subversive cross stitch, replete with hearts and yellow-and-blue DS ribbons as a border, from a friend of mine. Since she already knows about it, it’s not a secret wish, right? Nor am I fishing by posting it here, right? Cheryl? Right?)
Truth be told, I would probably hang it in my closet, which is my own little private sanctuary (no comments about being in the closet please. Ha ha, you’re all hilarious). It still makes me giggle, but it’s a bit too brash for me to display for all to see… plus I have come to realize that at this point in E’s life, most everyone who comes in contact with him just thinks he’s a darn adorable kid. Which he is. There are people who feel very sorry for him – most notably my mother-in-law (grr)* – but the majority of them don’t bring it up or even talk to us. Maybe they see him and think “oh, that poor mother and her retarded son”. If they do, they don’t say it to me, and that’s just fine. I think that the rude comments must come years down the road, when children learn to be cruel to one another and to make themselves feel bigger by belittling others. By that time, you’re not standing by your child all the time and mostly won’t have the opportunity to spout venomous witticisms at the offenders. (Besides: the comments are being made out of ignorance and low self-esteem… so what good is a venomous witticism, anyway?)
So I am working really hard to silence that inner snark, that nasty little defensive creature within me who wants to say something biting and sarcastic, because, well, that snark’s not getting a lot of business. Everyone who actually says something about E’s extra chromosome is usually doing so because they have a child with DS, a relative with DS, or a friend or co-worker with DS and they have something positive to say to me. That, my friends, does not deserve snark – it doesn’t even deserve the defensive posture I always pull myself into when someone mentions his syndrome. It’s a lot of work to permit myself to be open to others who have something to say about who he is. Slowly I am realizing, though, that all they are trying to do is create a connection with me, to say “hey, I’m familiar with this and I want you to know that”. Usually it’s because the person who creates that strand between them and me was or is a special person to them. This is why I’m working hard to be open to what they’re saying and the connection they’re trying to create, because those connections – those strands – are lifelines. They’re love. They are what is going to pull me through the times when I’m saying why me? why my kid? why my family? .
Or, they may be the start of a glorious new friendship:
Setting: Target. Scene: check-out. Cast: E, on Jo’s arm, peering out over her shoulder. T holding my hand. Large Black Man (LBM) flirting with E from behind Jo.
(I only mention the color of the skin of the stranger in this setting to paint a more detailed picture – and because it is awfully rare for us to be approached as a family in a Target by a tall, burly Black man.)
LBM: “Aw, how old is he?”
Jo: “6 months.” (smiles)
LBM: “How’s he doin’?”
Jo: “Fine?” (slightly confused quizzical look)
LBM: “Oh, I’m sorry, I’m just asking because I have a son with Down syndrome who’s 18 months old.”
Jo: “OH!” – proceeds to have a very nice conversation with him and pass along information about our parent group we go to -
We regret not giving him our home phone number. In hindsight, we aren’t sure why we didn’t – perhaps because we’re midwestern and we don’t think of just handing out our contact information to complete strangers?
Yes. Connections. Hush, snark. I will work to beat down the defensiveness and open myself to the connections, even if it means that I am opening myself to the potential of being hurt at some point. It will not be the overwhelming response to my (wicked cute) son.

* my mother-in-law, after visiting and spending maybe 3 minutes all told holding her grandson, went home and told Jo’s aunt that every time she looked at him she got “so sad thinking about how hard his life is going to be”. I can’t wait until he proves her wrong. CAN. NOT. WAIT. OK OK I know she’s of a different era, one in which people with Down syndrome were institutionalized, had life expectancies in the 20s or 30s and often spent their days engaged in mind-numbing activities in a sheltered workshop because that was the option available to them. She is an intelligent woman, though, and she does not take the time to educate herself on how people with Down syndrome live today, and chooses instead to just feel pity for her grandkid. Needless to say, we send the grandparents information to Jo’s aunt instead of to her mother.