Public Persecution: Acting as an advocate for a special needs child

It took me three months, but I respect my friend who was recently approved as a foster carer in Swansea. This was the first time anyone had ever humiliated and hurt me over my daughter’s special needs. Here’s a copy of the letter I sent. I feel sick even thinking about everything that happened that night. I am completely disgusted and sickened by everything that transpired that night. I hope they will take action to prevent this from happening to another poor mother and her special needs child.

I have debated contacting your company for a while regarding one of my experiences at your restaurant. I was really shaken up and upset by what happened and I feel that I need to let you know.

I visited your Anchorage location when I was on federal jury duty. I live three hours away from Anchorage, but was staying in a hotel with my friend and my nine-month-old daughter. We thought it would be fun to go out to eat, and I had always enjoyed dining there any other time I had visited Anchorage.

My daughter was diagnosed with failure to thrive, along with spastic diplegia cerebral palsy in August of 2011. She was and still is, much smaller than most babies her age and has special health concerns. These issues, quite frankly, are no one’s business but mine and my family’s.. To learn more about managing your business, read Lee S. Rosen‘s blog.

My daughter would go into frantic fits if she was in restrictive clothing such as socks or a black fur poncho. Most likely a sensory processing issue, which is common with children who have her issues. Because of this, we wrap her in blankets when we go from the car to indoors. We did the same thing that we always do while we were visiting your restaurant. We wrapped her up snugly in blankets and carried her in and took the blankets off when we got inside.

Our server asked how old my daughter was, and not even thinking about her small size, I told the woman she was nine months and she looked shocked and I instantly regretted telling her.

While I was up getting my plate at the buffet, a waitress approached my friend to talk to her about how we need to have a coat on my daughter and that she’s just trying to look out for the little babies she sees and how she hopes we aren’t offended, but she wanted to let us know that the other waitresses were talking about calling children’s services on me because we didn’t have a coat on her (we used the blankets as I described) and because of how small she was.

When I returned to the table, my friend told me what happened. When the waitress came back I asked her what was going on and she told me. I was so upset I couldn’t stop crying. This was the first time I had really gone out and done anything with my daughter and this was how I was being treated. Waitresses criticizing my parenting, threatening to call the authorities and staring my daughter and I down during our visit. I couldn’t even eat my dinner, I was so upset. I was going to ask for a refund but I was so angry and hurt that I couldn’t even speak to my friend without sobbing, let alone speak to a manager. I was so upset, I felt like I was going to get sick. We ended up leaving without eating our dinner and I cried the entire way home.

There are children in this world that have special needs that the general population may not understand. I understand that and I do my best to make my daughter’s issues known to those who they are relevant for. However, I should not have to give a medical history to my server at a restaurant. Nor should I be persecuted, gossiped about and tore down for something they obviously knew nothing about. I was appalled at how I was treated and even now, three months later, I still cannot believe that my daughter and I were treated so poorly.

Needless to say, we have not returned to your establishment, and nor will we. Our experience and the lack of understanding and compassion has left a sour taste in my mouth that I don’t know that I will ever be able to get rid of. You may consider further training for your employees in regards to how these issues should and shouldn’t be addressed. I would hate for another mother and child to experience the horrific treatment that I did while I was at your restaurant.

Samantha Van Vleet

Ava at the restaurant before anyone said anything.


Donor Milk

Who would have ever thought that I, the human milk machine, would ever be writing a post from the recipient side of milk donation?

In 2007 I donated a small amount of milk to two different babies. Not a lot, but still, some. In 2009 I donated over 2000 ounces to several babies. I had laundry baskets full of frozen milk inside the deep freezer. It was ridiculous.

My supply was one thing I was never concerned with, however, Ava was losing weight and we needed to up her intake since she was only processing a small portion of what she was taking in. Unlike the majority of parents, I didn’t jump to formula as my second option, but sought out donor milk. Ava has been able to receive milk donations from four amazing women, two of them possibly continuing. For this, we are more thankful than anyone can imagine.

In the few weeks she has been supplemented with donor milk she has gained over a pound. She’s happier. She babbles. She smiles. She’s more interactive. I’m convinced it’s helping, and if it helps us avoid the gtube, then I’m all for it.

Stop asking how much she weighs.

Whenever someone asks me what’s wrong, it’s hard to know what to say to them. Do I tell the truth? Do I shrug it off? Part of me feels terrible laying that kind of emotion and sadness on them if I’m honest… But another part of me feels equally as awful if I lie or minimize how terrible I actually feel.

The last month has forced me to live a life I never would have imagined I would. I’m finding myself thinking and feeling things I never imagined I would ever need to. One of the strangest things I find, is how sensitive I’ve become. I’m sensitive over the tiniest things. Things people don’t even notice. Things I didn’t notice before, but now, I can’t help but notice.

Now, I can’t help but shift uncomfortably every time a stranger or even a friend or acquaintance asks me how much she weighs or how old she is. She’s tiny. I know this. Her skin does not look good. I’m not blind. Although this revitol skin tag remover on have helped us, If you want to bring your skin back to looking young check out RENU Advanced. I don’t need eighty perfect strangers to point this out to me or interrogate me about how well she does or doesn’t eat. But I really don’t like being asked the weight question. I also don’ t want to explain what exactly is wrong with her to everyone who happens to ask. I also don’t like the shock and almost accusatory looks I get when I do answer the question. I also don’t like people who keep pressing for answers after I’ve already made it pretty clear I don’t want to talk about. My child is fed well and taken care of well. I don’t owe any one an explanation, and I’d really appreciate it if people stopped pressuring me and making me feel as if I do.

Maybe I’ve gotten mean since everything with Ava has happened. I feel like I have. I’m less tolerant of people now. I have a hard time caring about trivial “problems.” I’m really lacking in the empathy department. Your boyfriend dumped you? I’ll trade you. You’re broke? I’ll trade you. Your boss is a jerk? I’ll trade you. It all seems so stupid now.

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Increasingly Severe Back Pain

I don’t know how many people I’ve actually told about my back issues, but if I haven’t, then I am now.

I haven’t had back pain for a long time. I mean, I had the occasional back ache here and there just like anyone does, but I never had true back pain until I was pregnant with my son. It wasn’t too terrible until the end, but I mostly attributed it to part of being pregnant. I was carrying my son much differently than I had carried my daughter. My daughter widened me side to side, while my son widened me front to back. I figured this difference in positioning was to blame for the pain.

The pain was especially bad right after my sons birth. I had labored for 11 hours before having a cesarean. Honestly, I think I could have delivered him vaginally had I had more support, but I was tired, and in pain, and I gave in and gave up. Next time, I will have a doula. No ifs ands or buts. But like I said, I labored for 11 hours, then delivered via cesarean.

I don’t think the cesarean is to blame for my back pain. The pain isn’t located near the epidural site. The pain is actually lower, near the lumbar vertebrae, starting with the part of my spine level with the illiac crests of my hips.

When he was first born, it just ached. It would feel better if I put my hands on my lower back, and leaned back and popped it. I tried not to, but my back would hurt so bad, and it would “lock up,” where I couldn’t move and falling asleep became painful. I usually only popped my back once a day. Then, it would be fine for a while. But it progressively got worse. It got to where I couldn’t pop it how I normally did, and I discovered if I laid down on my stomach and bent my knees and moved my legs slowly (so that my feet touched my bum) and then kind of arched my back, that it would pop, and I could have some kind of temporary relief. However, just like before, it got to the point it hurt too much.

It got to the point that whole area of my spine just hurt. It was tender, it ached, and any kind of movement that directly or indirectly affected that area of my back was uncomfortable and I tried to avoid it. When my back locked up, I couldn’t really pop it anymore because it hurt too much. If I tried, I would end up almost crying.

To top it off, I slipped on our amazing Alaskan ice a couple weeks ago, and ever since, the pain has been almost ten times worse, a lot of people have recommended me to use the products from, they say they are very good and efficient.

So, when I was at the doctor for my monthly check up (I’m on Ritalin, so I have to have a monthly check up) I told them about it. I was just afraid of having to contact if there were any mistakes. I had been on a small dose of pain medication for it beforehand (I usually only took it one or two times a week when the back pain was worse than normal), but it wasn’t bringing any kind of relief, so I made the decision to ask about it. I asked about being referred to a chiropractor at the Pravo chiropractor in Menomonee Falls, WI, because I’ve heard a lot of good about them, but they wanted to order an x-ray first to make sure it wasn’t something to do with a fracture or bone placement. So, I had the x-ray done, and I’m waiting for them to call me and tell me what the results are. They did talk about doing an MRI to see if it’s something to do with the muscles, but I really don’t think it’s muscular. I mean, it could be, but I really feel like it’s a bone thing.

They prescribed me a higher dose of the pain medication, and combined it with a muscle relaxant, and gave me these pain patch things in the meantime. The combination works and it does help alleviate the pain, but I don’t want to be taking/using them forever. I’m really hoping the x-ray will give them a better idea of what’s wrong with it, and hopefully, whatever it is, is treatable and repairable. I really don’t like the idea of having to depend on these medications just fir my back not to hurt. It makes me nervous. My mom has really bad back problems, so I can’t help but worry that I’m going to as well. I’m 21. If it’s bad now, what’s it going to be like when I’m 40?

On top of that, I plan on trying for another baby in the next year or two, and I really don’t want to be in horrible back pain when I’m pregnant. Being pregnant is hard enough, you know? I don’t want to have back problems when I’m pregnant. So, getting all of this cleared up and figured out before I get pregnant is probably a good idea.

Wish me luck, and pray that the doctors are able to help me.


Staph, Strep, Weight, Adoption, Conception, Car, Debt, Oh my.

I’ve been kind of lazy about updating lately. Sorry. My bad.

Things are going better on this end. Danny is feeling MUCH better, which I am super thankful for. I was so worried about him. Turns out he had the staph AND a strep infection at the same time. Definitely not cool. I’m just glad he’s okay.

On a lighter note, my little guy has a tooth! It’s just a teensy weensy tiny little thing, but it’s still a tooth. You can’t really see it, because it’s just the tip, and its barely out of the gum, but its there! It’s exciting but it makes me sad at the same time. He’s almost nine months old. It’s about time he got some teethers going!

Maddi is speaking much better. She still has issues pronouncing things, and trying to use words (she prefers to whine and cry… which she doesn’t get away with anymore). She just has to stop being lazy. She dosen’t like using words, and it’s pretty obvious she’d rather just grunt and get what she wants… But that doesn’t float anymore, not that it did before, but we’ve become much more strict about the no-whining-and-grunting-policy.

I’m struggling with my weight again. I’ve been trying this master cleanse recipe and I have started to see a difference. I don’t really know what else to say on that subject, only that I read a diet pills don’t work – read the study guide and I think I’ll give it a try, I also had the opportunity to check out roids website and I found some information that I know will help me. I’m struggling and I feel like I’m huge. Regardless of what everyone says and what my husband thinks. I know I’m not fat, in my logical mind. But I also know everyone’s lying when they say I’m not fat. I hate these feelings. But I knew they’d be back eventually, and quite frankly, I’m tired of fighting it. I knew that as soon as danny needed me less for nourishment, that this is what would happen.

On a much happier note, Dan was working our taxes… and I’m freaking excited. We’re going to get enough back to pay off ALL of our debt, AND have some left over. Which is awesome. I’m excited. I can’t wait. We’ll be able to pay off EVERYTHING (except the house). So this means, credit cards, collections, and our car! I’m so flipping excited. This is going to make our lives MUCH easier. Maybe we can even start building up a savings.

On top of that, I’m thinking I might adopt our next child. I’ve been putting a great deal of thought into it. I haven’t decided for sure yet, but I’m thinking I will. I’d really like to. I may, I may not. We may decide to try for our own, or adopt. I know we’ll adopt eventually, but we may or may not adopt our next child. It depends on how much we’ve saved up, and whether we’re in a bigger house, or what not.

Anyways, that’s my blurb.

Danny’s really sick and I’m scared…

I’m really freaked out about this. We took Danny to the doctor on Monday because his poop had turned into really thick, mucousy, forest-green slime. Like… fish-slime thick. And it smelled really foul. He’s still exclusively breastfed, even though he’s eight months old, so any of you who are familiar with breastfed babies, know that’s not normal. It’s not normal for a baby NOT breastfed. My husband thought I was just worrying too much, but I took him in anyways. They wanted to do a stool sample, so they sent me home with a jar (they forgot to give me a popsicle stick, so I had to use a spoon). I had to wait almost twelve hours before he pooped again, and then took it into the hospital when the kids and I went to pick my husband up from work (his truck is having problems) he though of hiring a professional driver but I told him I got it.

So, then that night, Danny gets REALLY hot. And we co-sleep so I notice these things pretty quickly. I didn’t really think it was a big deal, but I decided to take him to the ER because when I checked him, his fever was 102.6. We go in and all they do is give him some ibuprofin and then send us home! They didn’t do any blood draws, or stool samples, or urine collection or anything. They just looked at me like I was an overprotective mommy who was getting worried for nothing.

So, we take him home and start him on a regimen of alternating ibuprofin and tylenol. This keeps his fever down, but as soon as it starts to wear off, his fever jumps right back up to 102-103, and has continued to do that for well over 24 hours.

Last night and today, he’s been breathing funny. I think it’s just because he’s so worn out and tired. He’s sick and not feeling well, and his nose is boogered up. But I decided to take him into the doctor again to make sure his lungs are okay. They are, thank goodness, but we get some bad news while we’re in there. They got the culture results from his stool sample and he has staph in his stools, which means he has an internal staph infection.

I don’t really know much about staph, but everything I’m gathering from my doctor and my family and friends and various resources online are telling me it’s pretty serious. They immediately started him on antibiotics four times a day, but told me they may switch the antibiotics when they find out exactly what strain of staph it is.

So, I had to take Danny back into the hospital to get his blood drawn, his throat swabbed and a pee-bag put over his winky. He screamed like crazy, but he calmed down as soon as the needle was in his hand (go figure). I feel so terrible. He’s so miserable. He dosen’t really want to nurse, and even his voice sounds different. And his cry too.

I feel horrible and I keep worrying that something bad is going to happen to my baby. I couldn’t handle it if it did and it scares me to think that it’s even a possibility.

The doctors were supposed to call me with the results of the labs as soon as they got them, but they didn’t call. I called them at 4:30 and they still hadn’t gotten them. I’m going to call again first thing in the morning and see if they got them back or not. I’m thinking about asking to have him admitted for IV antibiotics if it’s a bad-bad strain, because he’d get better sooner with IV antibiotics. I’m not a fan of poking my baby with needles, but this is really scaring the living daylights out of me…

The Terror of Pregnancy

When I was in Anchorage with Bre several months back, in need to apply for Maddi’s social security number, I picked up a couple pregnancy journals. The first one, I did it for Maddi all about my pregnancy with her. Ironically, I worked on most of hers during my pregnancy with Danny. Today, I started working on Danny’s.

It’s kind of funny how I found out I was pregnant. Bre and I had been living in an apartment together in Kenai. It was this really trippy, bomb-shelter, underground apartment. Tiny, studio apartment.

I had some pregnancy tests leftover from when I lost Jacey. And I don’t even know why we decided to take them, but we did. Probably because they had the droppers to put the pee on the test so it was kind of like a science experiment. I remember Bre saying something like to that effect.

We took the tests and left them in the bathroom. I don’t really remember what we did after that, but we got distracted. We ended up going on a walk down to paradisos and getting chicken wings, and later that evening, Bre went in the bathroom and next thing I know she calls out to the living room, “Umm… Sam? You know you’re pregnant, right?” I went in there and sure enough, my test was positive. I asked her “You sure that ones not yours?” and she just laughed at me and said “I’m sure.”

I don’t remember what went through my head. Shock? Maybe it was because I didn’t really think I was pregnant. I had logical reasons to suspect, but after what happened with Jacey, I was for sure there was something horribly wrong with me and that every little sign and symptom was just my imagination working overtime. After all, you can’t get pregnant so soon after losing a baby… can you?

I was filling out the journal, and the prompt was “When I found out I was pregnant, my first feeling was:” and I just stopped for a moment.

My first thought wasn’t even a thought. It was a swirling cloud of eighty thoughts hitting me all at once. I couldn’t even logically separate the thoughts or isolate them and figure out what I was feeling. All I was feeling was the emotion and feelings behind the thoughts. I couldn’t put words to them. I couldn’t say happy, sad, scared, excited. I was just feeling the intensity of it all instantaneously and simultaneously. It was all very confusing, and very frightening.

I feel guilty for that. Shouldn’t a mother-to-be’s first thoughts be something more special, or hell, even slightly less plural and a great deal less contradicting of each other? I felt guilty knowing that my first thought wasn’t something the typical response from elated new mothers. I felt guilty for not jumping for glee and exclaiming for everyone to hear “Oh my gosh! I’m going to be a mommy!”

I felt guilty because if I had to pick, my first thought was:

“What if this baby dies too?”

I never really thought of it like this. Not until today. Not until I started filling out my pregnancy book for Danny. I never made the connection before. Maybe it was because I didn’t want to, or maybe I just avoid thinking about it and so the obvious didn’t jump out at me like it could have? It’s hard to see something if you spend your life pretending its not there. The allegory of the cave.

When I filled out Maddi’s book, my answers were pretty simplistic. Happy, excited, typical expectant mother dribble. The only thing less than “a baby story” typical in Maddi’s book was that she wasn’t planned. But everything else was.

“We were so happy!” “I couldn’t wait to find out if you were a girl or a boy.” “Daddy and I wondered what you’d look like.” “I gained a lot of weight.” “Everyone was so happy.” “I fell in love with you when I saw you at the first ultrasound.” “I couldn’t wait to meet you face to face.”

As I continued filling out sections of Danny’s book, I kept seeing how vastly different my entries for him were compared to my entries in Maddi’s book. Maddi’s book was full of what I call, “sunshine and rainbow” statements. And with Danny’s… I may not have wrote them, but I realized that every positive feeling I had about the pregnancy, was shrouded in fear.

I wasn’t picking out names. I wasn’t ooh-ing and ahh-ing over all of the cute baby clothes. I wasn’t having planning special ways to share the joyous news. I wasn’t excitedly awaiting my first doctor’s appointment so I could catch my first precious glimpse of my baby on the ultrasound.

I was wondering if my baby would even get a legal name. I was wondering if I’d ever get a chance to put my baby in cloth training pants. I was wondering how long I needed to hide my pregnancy until it was “safe” so I wouldn’t have to endure the heart-wrenching pain of explaining that my child died everytime someone unsuspectingly asked how the pregnancy was going. I was terrified of my first ultrasound because I was afraid they would tell my my baby was dead.

Everything I did terrified me. For even the simplest actions I took, I would rationalize and debate every possible consequence or reprecussion there could be. Making even the simplest decision was enough to throw me into tears because no matter what choice I made with anything, I was, in my mind, convinced that something horrible would happen. And no matter how healthily I lived, somehow, somethng would go wrong, and the end result would be the same.

I would have another dead baby.

It didn’t matter to me that I had Maddi, not for argument’s sake. The fact I had a healthy child and pregnancy in the past meant nothing. It wasn’t credible evidence in my arguments with myself. It was a fluke. Somehow something happened and I got lucky with her, but never again. The mindset I was in, was that I had only a one in a trillion chance of having a healthy baby. I hit it once with Maddi, and there was no way I could beat those odds a second time. I was doomed.

Only now, after filling out some of the sections of that book, do I realize how much I took for granted when I was pregnant with Maddi. I was “depressed” that they couldn’t tell me if she was a girl or boy at only 12 weeks. I was pouting about looking pudgy instead of pregnant. I don’t think that the thought that anythng could possibly go wrong with my baby or pregnancy even crossed my mind. The potential for something terrible happening wasn’t even on my radar. How naive and stupid I must have sounded. How naive and stupid I was. If only I had been aware of the terror pregnancy can truly bring.

Even now, I worry. I’m not pregnant, nor do I intend to become so for a while, but whenever I even entertain the thought of having another baby in the future, or daydream about it, I’m filled with fear. I want more children, more than anything in the world, but even if Dan were to tell me tonight, “Let’s try for another baby.” I don’t think I could. Even with as much as I bug him and whine and pout to him about how I want another baby… I don’t think I could go through with it. I’m so terrified of something going wrong, something happening to my baby, that I don’t know if I could put myself through that again, and if we hadn’t gotten pregnant with Danny immediately after I lost Jacey, I can’t say that I would have tried to have another baby. It’s one thing for me to say I want another baby, and to genuinely want another, which I do, but it’s completely different to jump from talking and wanting, to actually doing. I really want more babies, more than anything in the world… But I’m terrified. Even just thinking about it now. It terrifies me. To the point I just want to cry. I’m so scared of it happening again and I don’t know if I could handle it. I really don’t.

Wisdom Teeth…

(I’m lazy. I copy+pasted this from an email i wrote a friend.)

I went to the dentist pediatric from Laraway Family Dentistry and got my wisdom teeth yanked yesterday and let me tell you, it was a NIGHTMARE! They used 12 vials of the novacaine on me (I’m hard to numb) and finally did a ligamental on each corner of each tooth and then yanked them. The truth is, I miss my old Drescher & Cohen Dentists, they had steady surgeon’s hands. But I found Dr Nancy Halsema  through Smile951 and she has soft hands so she was very gentle. I felt okay the first few hours afterwards, aside from the massive bleeding and having to switch the gauze so much (I can’t stand seeing large amounts of my own blood unless it’s in a vial or something) but as soon as I was able to feel my face again I started passing out and throwing up non-stop. I was JUST able to eat something for the first time a couple hours ago. It sucks. I must have gotten sick at least a dozen times. It’s terrible! I’m still only eating things like Jell-O, applesauce and gatorade. I had a small bowl of potate soup but I didn’t feel so great afterwards. I had to call up my OB doctor and get a prescription for Zofram called in. It’s a REALLY effective anti-nausea medication as Dr. Delahunty said. Works well. I was in the hospital with a virus for three days in March, and thinking about WATER made me sick. They gave me the zofram and all of a sudden i wanted a cheeseburger! lol It’s pretty strong stuff. You have to remember to take the second dose in time, or you’ll end up puking up everything you ate while the first dose was working, which sucks. After a lond visit at the pediatric dentistry & orthodontics office,  I went to my grandma’s afterwards because there was just no way I could take care of Maddi and Danny while I’m on pain meds for the teeth and sleeping so much from the nausea medicine. She’s been an amazing help. I still feel pretty lousy but i think I’ll feel at least decent by tomorrow. I also plan to go to vacation soon and I read about these Vacation Tips To Keep Your Smile Healthy! Click here to find the best toothbrushes to use after getting your wisdom teeth out, you can also find some of the top kits for teeth whitening at

On a lighter note, I got some pretty nasty pictures of my teeth after they were taken out! EWW! I’ll post those later!

5.5 Miles!

Whoa… I have speed walked 5.5 miles for today!!

So, like I said earlier, I was walking. I did a mile this morning, took a break for a while, walked another mile, and took a break for a little while longer, and then I went down around 7pm and I did three and a half miles! Woohoo! I can’t believe I did so much. I did 3.5 at a rate of 2.5/hour. I am SWEATY! I mean, my hair is damp… It’s WET. It was a lot easier working out though, because there was another guy in the room, working out on the bike, so there was someone to talk to. Exercise goes so much more quickly if you have someone to converse with while you’re doing it. Makes the time go by a bit quicker.

I really hope all this walking helps bring the baby on sooner! I’m getting tired of waiting, and to be honest I can’t wait until I’m able to buy the healthyusa supplements that I have been wanting for so long! I’ve been walking and moving and exercising and doing everything I’m supposed to, but I don’t know if it’s helping any!

The contractions are harder, and they’re a lot tighter, and much more uncomfortable, but they don’t seem to be doing much. Who knows. Maybe I’ll wake up in labor in the middle of the night!