Stigma Be Gone

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On my birthday this week I was visiting someone dear to me in a psychiatric ward. Visits there are challenging and exhausting, sometimes there may be glimpses of hope, but generally visits are difficult at best. Our family is known for coping by using humor, sometimes inappropriate humor. I told my husband and a close friend I could now check “visiting a psych ward on my birthday” off my bucket list. Yup, inappropriate for sure.

While visiting I heard a code blue called for the pediatric hospital unit. I have been in a pediatric hospital room during a code blue. I know what that looks like and what it’s like to experience from a parent’s point of view. It was early on in our daughter Shannon’s medical journey and I remember huddling in a corner unable to escape as the code team flooded in to the room. Once it was over I feel in to a puddle of emotions.

Towards the end of the visit I waited in the hall and couldn’t help but listen to a woman deeply, deeply sobbing while a psych aide sat outside her darkened room likely on suicide watch. Part of me wanted to escape and part of me wanted to let her know that although I didn’t know her or her story, I’d heard her pain, I felt her misery. I wanted her to know she mattered and was worthy. At that moment, the abysmal pain of that space was overwhelming.

 

Yet in the midst of that sorrow there are men and women working there who put themselves in to that place of sorrow to help those fighting their way up from deep depressions or out of psychosis causing delusions and paranoia which has, hopefully temporarily, stolen their personalities. These are ordinary people doing extraordinary things.

I admit I haven’t always understood mental illness. I struggle with wanting to quote Cher in “Moonstruck” and say – Snap out of it!, but I have learned and continue to learn and understand. I’ve been stretched in ways I didn’t know I could be and hopefully have become more compassionate in the process.

I do know how we view mental illness vs. physical illness doesn’t make it any easier for anyone who is recovering or struggling. Recovery from illness of any kind should be cheered on and applauded, but the stigma attached to mental illness often doesn’t allow that and that should stop.

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Prayer – An Instrument of Peace or a Weapon

Yesterday in a store parking lot I was chased down by a woman who asked to pray for my son. I had Chad with me and my grandson who is 8 mos. I knew she meant Chad and assumed, perhaps, she had a soft spot for people who have Down Syndrome.

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She proceeded to tell me there was a website that tells of people being “healed” down to the cellular level with Down Syndrome. She touched him, said a one sentence prayer and quickly went on her way. I was so stunned I didn’t say anything. Here’s what I wish I’d have said.

1. You addressed me and talked over my son and by doing that you immediately                 demonstrated that you did not consider him a fully human person who should be spoken to directly as any adult should.

2. By telling me you wanted to change him to his cellular level you told me he was a mistake. From the moment of conception you think God created a mistake.

3. You never asked me if I thought Chad needed to be “fixed”. By the way, I do not. He          is happy, healthy and his family loves him exactly as he is. We would miss much of                what makes Chad, well, Chad if you had your way.

4. We know many other people do not find him worthy just as he is and show it in many        of the same ways you did, but you thought you were being kind and helpful and                        Christlike which, to me, makes it even worse. You used prayer as a weapon to inflict              emotional pain rather than an instrument of peace.

5. If you were bound and determined to “hunt” down someone whose child had DS, I’m       so  grateful you chose me. How devastating it would be for young parents learning and         coping with an unexpected diagnosis to have you approach them and tell them if                     they just prayed they could change it all. I know a little something about people                       implying if only  you prayed harder, or the right way, your child would get better. You           create more pain than you  will likely ever know.

6. If I would have had to explain to Chad what our encounter was about it would have              broken my heart. How do you tell someone that this stranger thinks you are imperfect          and need to be fixed. On the other hand, had he understood, I suspect my words would          have come to me quite quickly to immediately counteract her hurtful words.

It frustrates me to think she is likely excitedly telling her friends about our encounter without realizing the consequences of her actions, but maybe this will stop someone else from making the same mistake.

Now, excuse me while I go enjoy a superhero movie with my Chad. You haven’t lived until you see the joy he takes in his superheroes. Perfection.

I’m Back

Seven months ago I removed my blog Serial Adopter. Much of it was due to the unauthorized use of a photo of our daughter Shannon, a story I will share for sure, but I won’t share as many private family photos as I once did.  I have often shared too much and so am rebooting. I’ve missed writing and have stuff I wanna say and perhaps some people wanna hear and we’ll see where that leads.

I also changed the name of my blog to I’m the Mom rather than Serial Adopter. My thoughts and feelings about adoption have also evolved and my kids, both adult and minor, can share what they want about that. I do have a couple kids who due to their special needs can not share their stories and sometimes I will share their life experiences in the hope that it is an encouragement to others who are parenting special needs kiddos. I also hope that it will help those who are not familiar with those in the special needs community to raise their awareness and overall make the world a little more accommodating and welcoming to them.

When I speak of the special needs community I use that term because it encompasses a general population vs. a specific title such as autism/intellectual disability/Down Syndrome etc. I ask you to remember that most of what the SN community asks for in life are things we all expect will be available to us – education, family, home, transportation, employment – so their needs aren’t particularly “special” even if sometimes we have to think outside the box to achieve those things.

Lastly the title I’m the Mom comes from a couple of experiences that I’ve had as a mom to children who don’t look like me. One in particular comes to mind. When shopping for a wedding dress with my daughter we sat down at the desk to fill out our information. The salesperson wrote down all the pertinent info. – bride’s name, wedding date etc. She then turned to me and said “and you are…..”. I blinked a couple times thinking, well who do you think I am, and then replied “I’m the Mom”. I forget that at first glance when the race doesn’t match other people don’t connect the dots. It’s just the norm for us.

Being The Mom is a privilege 11 wonderful people have given to me and although I have often failed at that title, I try to remember what an honor it truly is to simply be The Mom.

Dear Typical Mom

Dear Typical Mom,

I’m sorry.

I’m sorry that when we lined up for seats on the Extreme Swings at the amusement park today your tween-age daughter got the seat next to my teenage daughter.

Sorry that your girl was too uncomfortable to sit next to my girl. That she was so uncomfortable that she traded seats with you, and very sorry that you let her.

Sorry you missed an amazing teachable moment with your girl.

You have no idea of the opportunity you missed.

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You missed teaching your girl that she should show respect to those who need a little extra loving care. Even if she was too freaked out to sit by my girl you could have, at the very least, modeled it for your girl. You could have talked with Callie, introduced yourself and your daughter – anything to show your girl that you valued my girl.

You missed knowing a girl, if even for a few minutes, that rode the Extreme Swings and then went to the children’s area to ride the children’s swing ride with just as much unabashed enthusiasm.

You missed spending just a few moments with a girl who demonstrates Satchel Paige’s “Dance like nobody’s watching” quote better than anyone. She jammed to a tune while she waited to ride on the Enterprise, a spinning ride that is vomit-worthy, while others backed away from her. I don’t know if it was because they didn’t want to be near her or because she is a brazen, audacious dancer and she never, ever gives the gawkers around her a second thought. She dances without regard to the stares because, well, because it truly is nobody’s business and unlike most of us, she embraces that. I absolutely adore that about her.

I’d say it’s your loss, but it’s my girl’s loss too. Every time she is ignored it is a missed opportunity to practice her social skills.

So, truly, I am so sorry. Sorry that you missed an opportunity to meet a person so uniquely made, a mold breaker to be sure. I know I’m biased, but I’m pretty sure you missed a one in a million opportunity.

Sincerely,

Mom who is proud of her atypical girl

 

Shannon is 17 today and today truly was mostly about her. Not in a normal 17 yr. old spa, pedi/mani out to lunch kind of way though. Shannon had an appt. for a wound check on her surgical incisions which turned in to a major event. Not the actual appt., but getting everyone on the same page about what this appt. was about. Her surgeon was unavailable and we were told her pediatrician could just check it and then we’d see the surgeon in another 3 weeks for X-rays and such. Well, nothing is that easy. Today between the two of us we made or answered no less than 14 phone calls. It was ridiculous. The pediatric office was freaked out about checking on a hip replacement wound, apparently they don’t see those like ever, but a surgical wound should be a surgical wound I would think.

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Happy Birthday to Shannon!

She has two incisions. One for the hip and the one inside her leg right at the top for her adductor tenotomy. That one has given us concern as it lost it’s steri strips, which hold it together, only about a week after surgery. We’ve watched it closely and called and described it. Today the pediatrician took a sample to check for potential infection. The last two phone calls of the day came simultaneously with Mark on one phone and myself on the other about the exact same appointment which we will have tomorrow AM with one of the surgeons associates. Everyone is now sufficiently freaked out about follow-up that we have to drive quite a distance to double-check on everything.

Part of the craziness this morning was the constant back and forth between the pediatrics office trying to decide if they could handle it or not. The last call was only 45 min. before her appt. and Mark informed them that we can’t just run out the door with her, it’s quite the process.

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First this vest has to go on and it zips in the back. This is to attach her to the chair itself as it only has a seatbelt. Her usual wheelchair has all the straps for traveling that are constantly in place.
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There are then two straps that go between her legs and anchor her to her chair.
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Next the wheelchair and bed are placed side to side and the bed is lowered so she can slide from the bed to her chair.
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Next the transfer board is slid partially under her body.
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Then she slides right over on to her chair. The set up is a bear, but the actual move is simple.

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On Sunday we will have a little open house to celebrate with friends and family another year with our girl. We have great hopes for this next year. A new wheelchair will be coming this summer and this new hip will be tried out. So, happy birthday sweet girl. You inspire us every day to keep life in perspective and never, never take life’s little pleasures for granted. Every day is a gift.

Play Date at the Mall

It’s happened. My 11 yr. old – I don’t like the term tween, because she’s still a kid, maybe when she turns 12 she can be a tween – had a “play date” at the mall with a couple friends.  This is surprising for one very specific reason.  My daughter HATES to shop.  Apparently, spending time with friends trumps her great distaste for all things shopping.  She had earned $15 by doing chores and they were going to have lunch together.  

We had worked it out that we would meet every hour or so and check in.  My kid doesn’t have a phone – not in the family budget – but both the friends had a phone with them.  Two times I ran into my girl she was sitting at a table watching the friends’ bags and purses while they shopped.  She was completely content just hanging out. When Ella left the mall, she had no bags, just an empty wallet in her pocket.  The other girls both had a couple items they had purchased.

When I queried Ella on where her $15 went she said lunch and the arcade.  That seemed about right.  It does, however, blow my mind that she spent $15 with absolutely nothing specifically to show for it.  Her older siblings will, no doubt, once again rail about how much more privilege these younger kids have than they did.  They would be right.  Our pennies couldn’t possibly be pinched any tighter when they were growing up.  We didn’t have a cent to spare just to feed and secondhand clothe those kids.

Walking around the mall for 4 hours – not ready just yet to drop 11 and 12 yr. olds off at a mall by themselves – I had plenty of time to shop.  I went into many stores and even picked up some items, but then put them back realizing I really didn’t need them.  I did end up buying a few $2 and $3 shirts and some Easter clothes, but the best thing I bought was  lunch – for myself – by myself.  It was a lovely hour long lunch with just me and my computer and I thoroughly enjoyed myself.  

What I said about my girl having absolutely nothing to show for her $15 was incorrect – she got a fun afternoon filled with memories of hanging with friends.  All too soon having so much free time that you can just hang around a mall for four hours with friends and no time frame will come to an end.  So, yes she got plenty for $15 and it was definitely worth it.

French Fries With a Side of Flirtation

Today’s after church lunch at Culver’s, a fairly regular event, was quite amusing – to us and those observing us.  For some reason Shannie often cries when we arrive somewhere other than home until she settles in and decides to stop – generally 5 – 10 min. tops.  Today she was pushing 10 minutes, but finally settled.  That wasn’t the amusing part.

First Ella, Jacob, Christian, Callie and Jacob thought they’d sit at one of the high tables.  So, we grabbed two of them next to each other.  All this time Shannie is crying and people are staring.  Then Callie decided she didn’t want a high table and I convinced her to wait to move after her dad returned from the rest room.  Then we moved and Ella, Jacob and Christian stayed put.  Thankfully before our food arrived Shannie settled in and stopped crying and the staring became less obvious and more furtive, my preferred type of observation.

When the food came everyone settled in some and all was calm.  Pretty soon I noticed Christian was grinning ear to ear and glancing over to the counter gesturing and nodding his head.  Pretty soon he was leaning back with his hands behind his head and adjusting his shirt.  Jacob comes over giggling about how he’s trying to impress some girl.  Christian kept saying, “What? What?”  like – it’s all good, nothing going on here.  We all got the giggles and Ella was rolling her eyes and moving away from him.  It just became hilarious.  I don’t know if the girl said “hi” – she certainly didn’t approach him in any way.

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I teased him a bit about it in the van and when he got home he told Jacob she was his girlfriend.  I’m pretty sure that’d be news to her and he didn’t seem to know her name, so that makes it kinda tricky I’m thinking.  It was so funny to watch him attempt to impress her with his somewhat limited flirting skills.  Gotta admit – Christian had more game than a lot of 14 yr. old boys who’d never have the confidence to even look in a pretty girl’s direction.  She may not have given him the time of day, but he still enjoyed every second of the experience.

Medically Fragile Kids are Students First in School

Yesterday was Shannie’s IEP.  Mark went as we had some concerns and I knew he would make the case in a non-emotional, calm, cool and collected way. He is just so much better at getting the same result with less emotion involved in the process then I am.  I’m always so grateful to have a partner in these situations.

Shannie is in a classroom geared for kids who are classified as medically fragile.  She definitely qualifies, but only in the technical sense as far as I’m concerned.  She hasn’t been in the hospital for illness, always pneumonia, in over 10 years.  All other times were scheduled orthopedic surgeries.  Compared to many kids in this classification she’s on the milder end – no trach or ventilator – for which we are super grateful for sure.

Our main concern was that Shannie be treated as a student at school, not a patient, and sometimes it seemed as if that line was blurring.  Often her notebook came home with oxygen stats or temperatures on days when she was not the least bit sick.  In fact she’s maybe missed 3 days of school this year due to illness, general illness,  not life-threatening illness.

I tend to prepare myself for a possible fight in these situations, but more often than not, when we lay out the issues and clarify our expectations all is well.  In this case, Mark shared with her staff the anxiety Shannie feels surrounding medical situations and whether her anxiety was playing in to what they perceived as illness at school.  Everyone seemed surprised that she responded with anxiety – to the point that versed, an anti-anxiety med which also produces amnesia, – is given to her as soon as she enters the hospital for the injections she receives four times a year under anesthesia.  She has been known to raise her temp. several degrees when she is anxious.  This is why I was so concerned that the hyper-vigilance over her medical issues be dialed back.  She has enough real issues that have to be dealt with, let’s not pay attention to anything that’s not a real issue.

Shannie often freaks out people who are not familiar with her frequent coughing, rattling in her upper chest and occasional gagging.  We, who are familiar with her, know for Shannie, this is normal.  It is always upper, as in back of her throat, respiratory stuff.  It is very rarely actually in her lungs.  Her “normal” takes some getting used to and absolutely requires some relaxation on the part of her caregivers.  You can not get worked up over every funny sounding breathe or muscle cramp/jerk, seizure etc. or you’ll make yourself sick with worry.

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Yesterday was a great example of the purpose of an IEP, in my opinion.  It helps clear the air and get everyone on the same page.  Ultimately, with Shannon, we are the ones who will pay the price long term for whatever decisions are made regarding her health.  Our goal has always been for her to be comfortable and experience as much in the school setting as possible.  When she is a student first and a student with some medical issues second that goal is a lot more likely to be achieved.

Chocolate Pudding? Depends.

Yesterday as I picked Jacob up from school and we were rushing out the door two younger boys said, “Hi, Chocolate”  then a minute later added “pudding”.  I wasn’t able to process what they’d said quickly enough to have a talk with them, but I also know that would have made Jacob very uncomfortable.

I asked him if he knew the boys and he basically said they were just annoying 2nd graders.  We talked about it a bit and I told Jacob and his sister that, just like their older siblings, if they were friends or family and they called each other chocolate and vanilla or Asian and Mexican, as his siblings do, that’d be different.  If they aren’t really friends and these boys just decided that was okay to call him – it’s not.

I’ve sent an e-mail to inform the teachers and let them know I realize these boys likely meant nothing racist by it and wasn’t sure there was much they could do about it, but that I wanted them aware in case they overheard it sometime.  I also let them know that, different place, different person and the response might be much less pleasant than Jacob’s rushed “hi” back to them.

The acceptance of a nickname indicating anything to do with race has everything to do with the relationship between those people.  Those of us with young men of color whose core group of friends are a racial blend know that using names that might be slurs in another setting – just to be clear, not the “N” word, that’s never ok with me – is part of how they show their affection for each other.  Much like young men may slug each other or wrestle each other – it’s just what they do.

They tease each other with racial stereotypes – because they know it’s safe between them to do that and they’ve all had those stereotypes used against them.  Many black men use the “N” word basically in place of the word “brother”.  As an older white woman who grew up during the civil rights era – it just makes me really uncomfortable.

Just another reminder to talk to your kids about race.  It’s so often a subject white people don’t discuss, but when you don’t your kids assume there’s something bad or wrong about people whose race differs from their own.  This article Even Babies Discriminate shows that  kids do think about it and if we’re not talking about it, then they think it must be bad. Another great resource I just read is Five Myths of Talking About Race With Your Child.

One of These Things is Just Like the other

Several times this week I’ve been looking at the Disney/princes/Barbie aisles in Target looking for something for Callie’s Easter basket and today looking with her for a new doll. It’s been very disappointing to see the lack in diversity – not surprising – but disappointing.

In the Easter basket aisle I saw this.  My first thought was, “One of these things is not likeImage

the other” – oh wait, no – all the same.  Since our country is now comprised of about 36%  people of color then Disney should have had at least one of these three some shade of brown and no, brown hair and green eyes don’t count.

Today Callie wanted to replace the only boy doll she had but lost, so back to Target we went.  The only boy “Barbie” dolls they had were blue eyed blondes – seriously.  She found a wedding set with Barbie, Ken, a ringbearer and a flower girl – every last one blue-eyed blondes.  That was out both because of the complete lack of diversity along with the price tag, not to mention the wedding obsession she does not need fanned.

She finally settled on a set of princesses.  More than I wanted to spend, but it’s a rare occasion that she gets to pick out a toy.  This was also a disconcerting purchase.Image

Seven princesses – seven – and only Tiana is “of color”.  Where are Mulan or Pocahantas?  I can not be the only mother, no matter what my ethnicity, who wants their child to have toys that reflect the beauty of the entire world we live in, not just a portion of it.  It’d be like playing with one color of legos – how boring would that be.

Come on Disney – get with it.  It’s hard enough that I have a daughter who in interested in something like princesses, don’t make it even harder for me by only promoting the submissive pure white ones.