Mean Girls, Cliques, and the Beauty of having a Child who Doesn’t Really Get it…

I HATE mean girls. Unfortunately, I can recall at least a few times in my youth when I think I acted like one. Not because I truly was a mean girl, but because I wanted to fit in with those girls and be accepted. Gah, what was I thinking? If I only I could go back and have a re-do. I think having a daughter is a way to show us women the errors of our younger days and make us question everything we did growing up. It’s like a constant flashback into our past.

My 11-year-old daughter, E, is sweet and usually just wants to fit in. Basically me as I was at 11 years old, except she has Celiac Disease, Alopecia and some intellectual disabilities added in. Mean girls just gravitate towards her like a heat-seeking missile. But mean girls have gotten smarter since my day – now they are not quite so obvious. They’re little master manipulators who, when you speak about them to teachers and parents, the adults think and say, “she’s so sweet and such a good behaving girl.” Right – she’s the one spreading rumors about other girls and dropping F-bombs at recess. And I won’t even touch on how these “sweet/mean girls” treat kids like mine who don’t go to the same church on Sunday. Sometimes being left out of everything at that age can be just as bad as if these girls were just outright nasty. It’s madness and it’s heartbreaking from a parent’s perspective.

But I guess I’m kind of lucky: my sweet, quirky, awesome daughter lives in her own world and is basically oblivious to much of the meanness. It’s me who is bothered the most by it. She has “friends” who don’t invite her over to play, who only come over to ask her to play as a last resort, and who never ask her to do anything. And E typically doesn’t think twice about it. Only yesterday did she FINALLY tell a mean girl in our neighborhood, “no” when she came and asked her to play, after she asked a neighbor kid right in front of E. But the satisfaction I felt was short-lived when I realized that E’s feelings were actually a little hurt.

So now the challenge is trying to raise E to have confidence and at the same time not be arrogant, to have empathy for others and yet not get taken advantage of, and to take the time to listen to others and not lose herself in the process. Most of all, I just want her to be “nice.”  I’m not trying to change the world or anything, but if more of us parents could strive to raise our children this way, maybe at least a few good human beings would come out of it.

-J

Why Can’t My Kids Just Get Along???

So there I was, in a hospital bed, holding my brand-new baby girl, when hubbs brought our then 3-year-old son (N) in to meet his sister.  N walked right over to us and said, “where’s my sister” and was less than impressed when he realized that his baby sister (E) really was a baby and wouldn’t be up running around with him anytime soon.  I think that moment has pretty much defined the rest of their relationship…

They are now 13 and 10 and just cannot stop bickering. They don’t physically fight thank God, because E can hold her own and would probably beat the crap out of N, no matter how big he is getting. Spending time with either of them individually is great – they typically act the way they have been raised to behave. But put those two together and it’s like like Rocky and Apollo Creed, like Donald and Hillary, like Tupac and Biggie – it’s maddening. And I don’t know how to fix it.

  • I’ve tried spending more one-on-one time with each of them and having their dad do the same.
  • I try to make consequences for their actions as fair as can be (I try to keep my end goal – raise them to be good, well-rounded adults, as well as my more immediate goal – try not to breed resentment against their sibling in mind).
  • I reward N for his good grades, helping around the house, etc. (he is more on track and cleans up after himself), but I refrain from comparing them to each other.
  • I remind N (in private) that E has some diagnosed difficulties and although she can be challenging to be around sometimes, it shows what a great person he is when he accepts that and treats her right.
  • I remind E all the time about all the things that make her wonderful and why I am so lucky to be her mom. I truly do try to tell her these things all the time but especially when I can see her getting frustrated.
  • And I ALWAYS tell them when they are mad at me “I love you, even when I’m mad or you are mad at me,” because you just never know what the next moment is going to bring.

Here is an actual example of bickering from last night, while the three of us were playing Skipbo. There were 4 piles of cards lying in front of us, 3 of them had 8’s showing –

N: Wow, there’s triple 8’s

Me: Yep

E: Double 8’s

N: Triple

E: I call it double

N: It’s triple, E! Mom, tell E its triple!

Me: Does it really matter? Somebody put down a 9

E: Double 8’s

N: (throws down cards) I’m not playing anymore if E’s going to mess around

Me: (looking at N) You are not quitting. Yes it is triple. E, it is triple, you know it’s triple and are just trying to annoy your brother. Knock it off.

E: Why can’t I call it double?

And then it was my turn and I had two 9’s so we no longer had a triple (thank God). But that is just a small taste of the constant, unnecessary bickering.

Will these kids ever grow out of it or am I destined to have two bickering adult-children?

-j.

 

The Countdown is On

The last few weeks have been CRAZY, and I haven’t taken the time to update my blog. I realized this morning that this is my outlet, my me-thing, so I need to take at least a few minutes every week or so to write down what’s going on. Who knows, maybe somebody out there in cyber space is going thru the same crazy things as me and needs to read my thoughts as much as I need to put them in writing…

It’s tough being a military family. For those who aren’t in the military, I think it’s easy to forget about the sacrifices that the youngest members of the military family (our kids) make. I often hear that “kids are resilient, they bounce back quick”  when we talk about how moving affects military kids, and I’m sure my kids will be OK. In fact, I’ll be all up in their business this summer making sure that they are indeed, OK. But the fact remains that in a little over 2 weeks (holy cow, only 2 weeks) my son and daughter will be forced again to leave their friends, their home, their schools, their sports teams, and their familiar surroundings, to move YET AGAIN for the military. We are actually pretty lucky, my kids have only had to move three times, and we are hoping this is our last move. But I do worry about them.

E, my 10-year-old daughter, is typically my handful. She has Celiac Disease, alopecia, hashimoto’s thyroiditis and eye problems. She has also been diagnosed with a mild conduct disorder, anxiety, and learning disabilities (as well as a below-average IQ, but we aren’t sure just how accurate that was).  With all that, she is still the sweetest girl and would do anything for anybody and on the days I can get her to focus and listen to me, I enjoy her immensely.  It has taken a couple of years to get her the help she needs at school and I wonder if I will be starting over once we move? She thinks she has several friends but I see the way they treat her and know they get annoyed with her, so I worry about her making new friends too.

N, my 13-year-old, has Type 1 Diabetes. He also currently has a broken tendon in his finger (mallet finger) that may require surgery.  Because we are so close to moving, we can’t do anything here (see, craziness). He’s like a clumsy baby deer on his long legs. He’s a good kid, but a typical boy who loves to irritate his sister. His personality is almost a perfect mix of my hubbs’ and mine – he is sometimes outgoing (like hubbs) and sometimes introverted (like me). My concern for him is that, like me, he appreciates being alone and I don’t want him to isolate himself once we move.  An acquaintance of his committed suicide earlier this year and it was a wake-up call for us. I’ve already got him signed up for golf and we are planning fishing trips for after we move, so hopefully that helps.

It’s much easier for me to leave, although I am starting to feel a little bit sad. I’m sad not because we are leaving Oklahoma, but because this assignment turned out completely different than we thought it would. Hubbs thought it would greatly impact his career, and that he might even retire here – it didn’t and he can’t get out of here fast enough. I thought I was going to have a great civil service job and that we would settle here until the kids finished school – I had a so-so job that I left right after N’s diabetes diagnosis because I felt that my supervision wanted me to choose between my family and my job.

And now I am leaving behind the only “career” I have ever known and trying something else that allows for more flexibility for my family, since E will most likely be diagnosed with Type 1 diabetes in the next few years.  I am leaving behind the basketball moms that I have come to love and will miss them, and I have one friend here that I already miss because she too is moving and her life is just as crazy as mine (another military family).

Here’s what my former “homey” house looks like now:

Living Room.jpgN Room.jpg

Did I mention that this house has been on the market over 100 days, has dropped $20K, has only had 5 showings, and has had NO OFFERS!

Like I said, military life is tough – for all of us, not just the active duty member.

-j.

5 Reasons Why I Will Never Win “Mother of the Year”

For every good deed I do as a parent, it seems there is an equal inadequacy that makes me feel like a failure (similar to Newton’s 3rd Law).  It’s so easy to get caught up comparing ourselves to other parents, that it sometimes feels only natural to question your own parenting skills and wonder how it can look so easy for others. In that spirit, I’ve been thinking lately about why I am not “Mother of the Year” material, and not likely to ever be…

1- I can’t stand stinky, sweaty boys lying around on my furniture. N will come in with neighborhood kids who have all been outside playing basketball or fishing for hours and they will sprawl out on my couch.  Perhaps it’s like OCD kicking in but I immediately want to sweep them off my furniture and hit it with the Febreeze. Does this not bother other parents???

2-  I love kids, I truly do, but I love them more in moderation. Kids (who are not my own) who are here so often they feel comfortable walking in my bedroom to ask me questions, who know what snacks we keep stocked in our pantry, or the ones who think my living room is a gym, are probably here too much. I’ve found myself wanting to make a STOP/GO sign to affix to the front door to let kids know if my kids can play, and whether or not it’s okay to knock and ask.  I’ll sit and play games with them, make them all lunch/snacks, and even watch movies with them – in MODERATION.

3- I don’t like meeting other parents that I have nothing in common with. I know, that’s a kind of dumb statement because how do I know I have nothing in common with them if I’ve never met them? Well, take this for example – E met a girl at school last year who was mean to her half the year, friends with her the rest. E begged me and begged me to meet her mom so she could have a play-date with her. Throughout the school year she told me how this girl’s mom got the crap beat out of her by her boyfriend and went thru rehab (which I then had to explain to my then 9-year-old what rehab is).  We’re a military family subject to a different set of rules, so to speak. Not to mention, I don’t want or need anybody’s relationship drama. I did meet this lady at the end-of-the-school-year party and while we were both nice enough to each other, most of our time spent next to each other was in silence (because we have nothing in common). My kids really want me to be “best friends” with their friends’ parents, but they don’t realize that it doesn’t always work that way.

4- I don’t support the PTA/PTO or any Fundraisers. Not because I am against raising money for my kids’ schools but in the case of the PTA/PTO, I tried one year and the women were mean and very cliquey. It was not at all like the friendly atmosphere I had envisioned. Where we live now I don’t typically support the fundraisers for 2 reasons

  • We aren’t from here so our “circle” is just us. We don’t really know anybody (unless it is parents whose kids are also selling the same stuff) so I think it’s crappy that these fundraisers have special prizes for the kids who sell XX items. Yeah, that’s great – explain that to my kid who can only sell like 9 when everybody else is selling over 100.
  • Secondly, I don’t agree with what the fundraisers are for. You want to raise money to buy microwaves so kids like my daughter, who can’t eat the lunch at school because it has gluten, can warm up her lunch, I’m in. But if you want to raise money so a teacher can get an iPad for her classroom, I’m out. I don’t think that is a necessity, especially in a state (Oklahoma) where the budget is so lacking that they are cutting some schools down to 4 day weeks, getting rid of teachers, and talking about closing some schools.

5- I treat my kids differently. Try as I might, my kids are so very different and I have to tailor my parenting to each. I’m no expert (clearly), but I think this is frowned upon. N is like me – introverted, sensitive, a little more quiet (unless his sugar is high), and appreciates being by himself. E is literally the exactly opposite – she has to go, go, go, is somewhat outgoing, usually can’t stop talking, and is incapable of being alone. When I’m mad at N for something, I know I don’t need to harp on him and beat the issue to death. He’s sensitive and will see that I am disappointed and he will feel bad. E, on the other hand – I’ll get mad at her and she couldn’t care less. But if I put her in timeout by herself somewhere, she will feel the repercussions because she hates to be alone.  Some in my circle think I favor N and am easier on him. Not true, I think it’s just easier for me to discipline him because he’s so much like me.

But the biggest reason I am not winning “Mother of the Year” anytime soon is….I FORGOT EASTER!

6- We are not a religious family. N and I are baptized Catholic, Hubbs and E are not. For many reasons I don’t really follow my Catholic faith anymore and prior to moving to Oklahoma we attended a non-denominational church in Utah that we really liked (that we will hopefully go back to). Anyway, the reason this is important is because as my family was reminding me that I suck because I forgot Easter, I asked them why do they think we even celebrate Easter, and only N really had a close answer. E wants to know, and it is my fault for not continuing with our reading of the Bible that we were doing, or taking her to kids church (another reason I suck), but she was just irritated that I forgot Easter because she was looking forward to a new toy. This is kinda how the conversation went (on Saturday, the day prior to Easter) while we were en route to a friend’s house for dinner:

*Note that expletives will be denoted with ________

Hubbs, speaking quietly: “So, did you get some candy for Easter?”

Me: “Why, when’s Easter? Oh ________, is it this weekend?”

Hubbs: “Are you ________ me? It’s tomorrow!”

Me: “Seriously? __________. You didn’t pick up any candy?”

Hubbs: “You’re the CEO, I thought you were getting the candy?”

Me: “Why would I get the candy? I ________ forgot it was Easter this weekend.”

N (from the backseat): “Mom, did you seriously forget Easter?”

E to N: “Mom didn’t forget Easter, she’s getting me a toy from the Easter Bunny!”

And so it went… we did rush to Target and got some last-minute Easter candy and a kit to color eggs, which ended up being fun because we hadn’t colored eggs in forever. And I planned a last-minute Easter egg hunt with some coins, nails (to confuse them), and pieces of paper with things like “vacuum out mom’s car,” and “go to the driving range with dad” printed on them inside. It actually ended up being a great day. The Easter Bunny can suck it.

So there you have it, the top 5 (with a bonus #6) reasons why I will probably never win “Mother of the Year.”  Anybody else just skating by?

The Road to Celiac Diagnosis – E’s Story

When I tell people that my 10-year-old daughter has celiac disease, inevitably they will ask me how we found out.  I think to many people, celiac is a middle-aged woman’s disease and it seems almost inconceivable that a little girl could truly be afflicted.  But as much as I wish it weren’t true, E does in fact have celiac, and it was a long road to diagnosis.

We always knew something was a little off with her. She was the BEST baby – she rarely cried and she slept, which was wonderful. She was much better behaved than her colicky older brother was when he was a baby. But when she was only a couple of weeks old, she would put her legs straight in the air and cry (a lot) when trying to poop. She’d stop crying as soon as she went and go back to being the best baby ever. We mentioned this at one of her well-baby checkups and the doctor said we could try changing her formula – so we did. The brand change didn’t help, so another doctor (by this time we had moved) told us to try soy formula – so we did. The soy formula didn’t seem to make much difference so the doctor told us to give her a few ounces of apple juice, a couple of times of day. That finally seemed to help a little so we stuck with that.  By this time she was about 6 months old.

Around this time she developed other problems, and her tummy issues took a backseat: the pediatrician noticed a lazy eye, that turned out to not only be “lazy” but also had compromised vision. So for a period we spent much of our energy on that. By the way, trying to get a 6-month-old to wear an eye patch and glasses is no fun.

Fast forward about 3 years and I noticed small bald spots on the back of E’s head. Her doctor told me that she had Alopecia Areata, an autoimmune condition where the immune system attacks hair follicles.  Wonderful. Luckily, my stepmom did some research and read somewhere (thank God for Google) that Alopecia in kids can sometimes indicate other autoimmune conditions such Hashimoto’s Thyroiditis (which I have) so I talked to her pediatrician about it and sure enough, E’s TSH levels were high and she had the antibodies indicative of Hashitmoto’s.

So why am I mentioning Alopecia and Hashimoto’s in a post about Celiac Disease, you may ask. Because one thing they all have in common is they are all autoimmune conditions, and as my endocrinologist once told me, “where there is one, there are usually three.” How true that is, I don’t know.  But read on…

After her Hashimoto’s diagnosis we again approached the doctor about our concerns with E’s constipation, bloated stomach, terrible gas, and to be blunt: huge poop.  At least two more doctors told us that it was just normal childhood constipation and we were given prescriptions for polyethylene glycol (Miralax), that she was to take daily.  When she was about 6, I even asked about celiac and was told by one doctor that E didn’t exhibit the signs of celiac because she doesn’t have diarrhea that has her racing to the toilet.

Fast forward again and E is 9-years-old and we have moved again, this time to Oklahoma City where we are seeing an off-base doctor. Does it matter that all the doctors before were military doctors? I don’t know. But our doctor here finally listened to me when I asked him this question,”exactly how long is my daughter supposed to take Miralax before we investigate what is causing her symptoms?”  He referred us to a Gastroenterologist who told me that he really didn’t think it was celiac but was going to run the celiac panel anyway to rule it out. It came back positive and a couple of weeks later that was confirmed with a biopsy.

I can’t be certain that E had celiac all along, especially since I’m not sure how prevalent it is in infants. Perhaps she only developed it in the last couple of years?  I do wish that more had been done to investigate her symptoms when she was younger though, and that is my fault as her advocate for not pushing harder. I guess there is a fine line between trying to be a good parent and not overstepping your boundaries at the doctor’s office.

When I found out E has celiac and that my other child has diabetes, one of the first things I did was turn to the internet to read other stories to see if anyone had similar experiences, if what we were going through was normal, etc. So I am sharing E’s story in case some other parent is on the fence and not sure whether to push their doctor a little harder to get the answers they need.  My suggestion is do it.

-J

 

 

A Dysfunctional Vacation: Graceland, The Dixie Stampede, High Blood Sugar, Snow, and…Marky Mark???

Sometimes I find myself so frustrated with my new life (stay-at-home mom with a Type 1 diabetic child and a celiac child) that I want to cry. Realizing that many, many people have challenges more difficult than what I face, I still can’t help but miss the days BDC (before diabetes and celiac).  This is probably never more true than while on vacation. We are moving soon and decided that before we head back west, we should take a trip to see two places I have wanted to see since back when I was a youngster in the Air Force: Graceland (I was in tech school right outside of Memphis) and Branson, Missouri (my first assignment was Whiteman AFB, MO). So my hubbs, bless his heart, planned a trip to take me.

So off we go – me, hubbs, my two ducklings, and our dog.

  • Side note: traveling with a dog sucks. Daisy is a 7 pound malti-poo who hates the car and whines until the 2nd day of the trip, when she finally realizes she is not going to the vet. To add insult to injury, the pet fees at hotels can be ridiculous. Really, Hilton and Marriott should think about charging based on the size of the dog because my 7 pound dog sleeps and likes to hang out in her kennel. The $100 fee in Branson was crazy. But that is a whole different rant for another day.

 

Daisy.jpg

Our first stop was Memphis, where we went to “The Pyramid,” the giant Bass Pro Shop that inspired me to get a crossbow to take fishing.  Then we hit up what E and I really wanted to see…GRACELAND!  It was awesome and we loved it. Even 13-year-old crabby N appreciated it. E and I have been singing Suspicious Minds ever since. Unfortunately the restaurant inside the Graceland complex did not cater to the gluten-free crowd and we were starving, so we did race through part of it. But I would definitely go back. We love Elvis!

 

Lisa Marie

It was in Memphis that two things happened: I think E got glutened and N started to have some high blood sugar issues. Thinking back, I’ve noticed that E got really restless and irritable in the past, on the nights we believe that she got glutened. That’s what happened in Memphis. She was hot (nobody else was), her tummy hurt, and she couldn’t fall asleep. She was restless and went from her bed in the hotel to mine, messed with pillows, went to the bathroom, etc. for hours. Finally it dawned on me that she probably had gluten while we were traveling that day and I was able to pat her back and help her get to sleep.

N’s issue, on the other hand, was not so easy to remedy. We recently started him on the pump and are still kind of new to the ways of the pump so we weren’t sure what to do. We examined the pump and it seemed to be working but it didn’t seem like anything was in the tube running to his infusion site. So we changed out his infusion site (thank God we brought extras) and off we went to Branson. We were extra vigilant about carb counting and still his blood sugar was running high (like 230-300). By the next day in Branson I called his endocrinologist’s office and talked to them about raising his basal rate and checking for ketones (negative), which we did and then things seemed to smooth out after another day or two. He’s still in honeymoon and we thought he was coming out of it but nope – we are still playing that game.

In Branson the one thing I really wanted to do was go to the Dixie Stampede, which we did and it was AWESOME. We all loved it. And kudos to them for having a gluten-free dinner available, including a cookie for dessert so E didn’t feel left out. While at the Dixie Stampede the photographer mentioned to us that he heard Mark Wahlberg was in town.  E and I listen to a lot of 90’s on 9 (XM radio) so she is well versed in 90’s music and knew darn well who Mark Wahlberg was. She couldn’t stop looking for “Marky Mark” after that and was planning on what she was going to say to him, and wishing she brought her Thunder hat (I know…makes no sense but it’s her favorite hat) for him to sign, etc. Unfortunately Marky Mark did not show up at our Dixie Stampede. But we did stalk him on Twitter for a few days and saw a picture of him golfing in Branson (where it was snowing and freezing).

Mark Wahlberg

 

Here’s how some of us may remember Marky Mark:

Marky Mark

Overall a great vacation, even if we did decide to come home a couple days early because it was warmer in Oklahoma. We ate at this amazing Taco place in Arkansas called Tacos 4 Life which completely catered to E’s gluten-free needs. I’ll have to review it, but in the meantime, if you are in Arkansas, I’d highly recommend it.

-J

Sometimes We Just Need That One Friend…

It was the day before I was scheduled to have my hysterectomy and I was FREAKING out already when I got the email: my ex-BFF asked if it would be alright if she came to see me while I was in the hospital. I didn’t know how to respond. I didn’t want to be rude and tell her to piss off, but at the same time the end of our friendship literally drove me into therapy. Actual, pay somebody to listen to me talk, therapy. To complicate matters further, my husband works with her – like sits right next to her and has to interact with her daily. So, I didn’t want to make things any messier for him than they already were. Unfortunately for me, in the time we had been in Oklahoma, she had become my one and only friend (I put all my eggs in one basket). I later learned that manipulators like her can spot people like me a mile away and smoothly ease into the folds of our lives, which she did. But that’s a whole different blog post for another day.

So anyway, I didn’t know how to respond to her email and feeling quite alone, I started day-drinking some wine (which is NEVER a good idea for me because not only am I a light-weight, but alcohol frequently gives me hives), sucked up my pride and went over to a fellow military wife’s house to ask for advice. At this time she was just an acquaintance – someone whose kids played with my kids. Who I knew I had a few things in common with, but who I also had never had a real, “deep” conversation with. But I was desperate, so off I went…

I sat there and told her the long, sometimes embarrassing story of the beginning and ending of my friendship with my “friend,” the almost ending of my marriage, and how it was bothering me to be losing my chance to be a mother again (although I knew we weren’t have more children – strange, I know). Through it all, she just listened – offered supportive words here and there, but mostly just listened. And it was while sitting at this woman’s kitchen bar that I realized how nice it was to have someone to just talk to (that wasn’t obligated to listen) and how much I missed having a friend. She has since become my closest confidant in Oklahoma, a real friend that I know I can call upon if needed. I hope that in the time since that November day, I have reciprocated that feeling of friendship for her.

Doubt

A Reprieve From Real Life? Nope.

Prior to diabetes and celiac, we would frequently eat out – probably too frequently. This was a habit we picked up since moving to Oklahoma. In fact, since moving to Oklahoma, I have gained roughly 15 pounds. I’m sure some of those pounds are due to the convenience of delicious, yet unhealthily prepared, restaurant food.

After my son’s diabetes diagnosis we cut down on eating out. Not necessarily to be healthier, but because counting carbs to determine his insulin dosage is such a pain in the butt. Seriously. The aggravation of a restaurant not publishing their nutrition information cannot be fully understood until you have a diabetic in the family. But like many other dedicated dining-out families, we figured out a way to guesstimate carb counting and pushed through; thus continuing on our unhealthy journey.

Enter my daughter’s celiac diagnosis. Although Type 1 diabetes and celiac often go hand-in-hand, celiac disease and its required gluten-free lifestyle are a completely different ballgame than diabetes and carb-counting.  If diabetes were baseball, celiac would be ballet. If diabetes was an apple, celiac would be a Snickers. You get the point. Anyway, because finding restaurants that consistently offer reliable, REAL gluten-free entrees (like for real gluten-free; not just a menu that says “gluten-free”) is so difficult, we rarely eat out. So when we do eat out I savor every moment – because it is a real treat for me, as the family chef, to get to go out to eat and not have to cook and then clean the kitchen.

Begin rant…

My daughter’s favorite restaurant since her celiac diagnosis is Santa Fe Steakhouse. The first time we went there post-diagnosis we met with the manager (who is a fellow Celiac), she went over their GF menu with us, and ensured everything was prepared separately for E and it was a great experience. We’ve been back several times and never had any issues…until this past weekend.

The restaurant was super busy, which looking back, should have been a red flag for us. That tells me that the line cooks probably won’t have time to worry about keeping E’s food separate. But E had her heart set on Santa Fe, so we waited about 15 minutes to be seated and then I asked for their GF Menu (which they didn’t have printed). So after waiting about 20 minutes for the GF Menu, I went and asked for it at the front again (our server was running around – not great service) . The GF Menu never did come so we ordered what we knew to be gluten-free (which is risky and never a good idea), a plain hot dog and baked potato, which we explained cannot have a bun and cannot touch a bun.

So then we wait. And we wait some more. Probably 20 minutes or so later our server brings our food out and goes to set E’s plate in front of her and says, “I don’t know why they put a bun on this when I told them not to.” Now, why would he even bring the plate out like that? So my husband, who doesn’t like confrontation (bless his heart) says, “Um, she can’t have anything on that plate because it’s all been contaminated by the bun. So it will all have to go back.” So off our server goes with E’s plate. Her salad shows up with a side of ranch that I can neither confirm nor deny is gluten-free because I still haven’t received the @^% Gluten-Free Menu that I asked for 3 times already so I ask the server (again) for the menu so I can verify the dressing is GF. FINALLY some manager brings out the menu but drops it on the table and dashes away real quick (not giving me a chance to voice my concerns darnit) and I verify that the ranch dressing is in fact, NOT GLUTEN FREE.

Here’s a pic of E before we figured out that the ranch has gluten (pre-meltdown)…

E Pic.jpg

By now E is in tears, starving and just wants to leave. I’m tearing up because I’m mad. Hubbs is irritated but because he doesn’t like confrontation, he acts like everything is fine. Brother N has scarfed all his food down so he’s happy as a clam. Finally (hallelujah) E’s plate arrives and she and I get to eat. I’ve mostly lost my appetite so my shrimp goes to waste and my potatoes are cold (serves me right I guess).

I realize that having food allergies or a special request can be trying for a restaurant kitchen, and I truly appreciate when they accommodate my daughter’s needs. I recognize that working in food service can be a thankless job so I am sure to always be kind to my server and have even left notes for waiters/waitresses who I’ve felt have gone above and beyond what they had to.  But what really irked me was that after all was said and done, crappy service, messed up my daughter’s food, and the issues with the menu – when the waiter dropped of the ticket it was full price. I can think of several restaurants where I’ve had fewer issues but they’ve still comp’d something in order to make up for whatever it was that went wrong. They could have at least given E a free drink. Really, she is the one who sat there and ate peanuts forever….

So very long story short, just when I thought I’d get a reprieve from real life and enjoy pretending that we are “normal” again (our normal anyway) – NOPE. Thanks, Santa Fe. Your fan-base just decreased by 4.

End Rant.

 

Gluten – Come out, Come out, Wherever You Are!

It’s not often that I watch daytime television. Truth be told, most weekdays you will find me listening to an audio-book while I do something around my house. Side note –  I firmly believe audio-books and their accessibility for free through the library are one of the greatest inventions of late. However yesterday was a Federal holiday and my hubbs was home, so we sat like zombies channel surfing for a couple of hours. We stumbled across the show, “The Doctors,” which I have seen once or twice before. I’m not confirming nor denying that I’ve stopped and watched that show before solely because Travis Stork is easy on the eyes. Anyway, yesterday Dr. Hottie just so happened to say the words, “gluten-free” so of course my husband stopped channel surfing, we watched it, and I learned something besides the fact Dr. Hottie has a cute smile.

A producer on the show took a nifty, yet expensive, little device to several restaurants that offer gluten-free meals and tested them to determine if their claims of being “gluten-free” were valid.  Here’s a link to the actual article/clip: The Doctors Link. Of the many meals tested at 10 different restaurants, all tested positive for gluten except one. I can’t swear to it but I think there was a blurb at the bottom of the screen that said Pizza Hut was the exception.  It’s important to note that in order to be certified “gluten-free” an item doesn’t have to contain zero amounts of gluten (it is allowed up to 20 ppm), so we can’t really say that all of these restaurants “failed” this test. However, for someone like my daughter who has Celiac, it is concerning. When we take her out to our go-to places that offer gluten-free menus, we make it a point to tell our server that she has Celiac and can’t have ANY gluten or anything that has touched gluten, and we hope that the restaurant is honoring our request. But my daughter, like many other Celiacs, doesn’t always show symptoms when she’s been “glutened,” even though the gluten is damaging her insides – making this even more of a conundrum for us.

Another concern of mine is whether some in food service are even aware of what gluten is and where it hides. Not that I expect any of them to be an expert but here is an example of a recent conversation I had during a birthday celebration for my daughter’s teammate. It’s a huge place that offers food, bowling, an arcade, laser tag, etc. Obviously lots of kids (and parents) so I would think a lot of different food preferences and probably allergies:

Me: “Excuse me, my daughter can’t have the ice cream that all the kids at the party are having (cookie dough) because she has Celiac Disease. Do you know if you have any that are gluten-free?”

Employee: “I have no idea”

Me: “Um, if you’re not sure, I don’t mind looking at the ice cream containers myself to see if any of them don’t contain gluten.”

Employee: “Well…they’re all made from milk (because I wouldn’t know that ice cream is made from milk), so I’m sure they all have gluten.”

Me: Rolls eyes and bites the side of my cheek, “You know what, never mind, we’ll just run by Coldstone on our way home and get her something.”

Hideout

Translating – Not Just for Other Languages.

“E is not progressing in speech therapy, and if she doesn’t start making some progress, I’ll have no choice but to recommend she be dismissed from Speech.”

These are the words that I heard from my daughter’s speech therapist during our IEP (Individualized Education Program) meeting this week.  The meeting was actually being held to discuss adding other “conditions” to her existing Speech IEP – Celiac Disease, anxiety, generalized conduct disorder, and 2 specific learning disabilities – and we didn’t even discuss Speech really at all, except for my questioning whether E’s new schedule would interfere with Speech Therapy. The therapist probably wouldn’t have even said anything if I hadn’t seen the comment written on my daughter’s IEP and asked what it meant. To paraphrase, she basically said that E is not putting forth much effort and her deficient sounds (S, SH, and Z) are still where they were when she started therapy years ago.

E is now 10-years-old and has been difficult to understand since she started talking. I’ve found myself “translating” for her really since she started talking, and was so looking forward to the day when I could not only be a true bystander during her conversations, but also see her self-confidence blossom. I know she feels somewhat self-conscious because of her speech issues and I can just see the frustration on her face when someone doesn’t understand what she is trying to tell them. With all the other issues she faces,  this is just one other thing that I wish my daughter didn’t have to deal with.

So what can I do? Well, I can continue to be her fiercest advocate and make sure that she gets the speech therapy she needs – whether it be through the school system or our medical insurance. I also have to put some of the responsibility on her; she has to work hard for this, even though it can be frustrating at times. But this is just one thing in a long list that  I will help my daughter with – because she’s a challenge, she’s unique, and mom’s always got her back.

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