Wow, you’re really not even going to consider making accommodations for my children?

I haven’t felt compelled to write a blog entry in a while. I wasn’t even going to write about this; however, the more I thought about it, I knew I had to put the words down somewhere. Maybe if just one person shows some empathy, I might feel a little better.

The best way for me to begin is to simply copy and paste an email I sent out earlier this week. I sent it to a semi-local drive in movie theater. After that, I will paste the response. Finally, why I think the response is wrong.

Hi there,

I just wanted to thank you for having such a wonderful place where families can go for a fun evening. Unfortunately, though, we will probably not be able to return. I would have sworn I had read all of your policies so closely…

We had been planning our trip for over a week. We live almost an hour away, so to really make it a special trip, we decided to spend the whole evening at the drive-in: dinner, lots of playground time for the kids, snacks, and the movies. We packed diapers for the littlest family member and pajamas for both kids. We arrived right after 6pm and the evening was fun; we even ran into some old friends. Everything was wonderful until right before the movie started. A staff member knocked on my window to let us know that you do not allow idling. Oh, no. I did not remember reading that, but I now know it’s on your website.

We didn’t last long after that point. Both of our children have medical conditions that make heat completely intolerable to them. It was “only” 80 degrees that night, but that was too much, even with the windows open. Before we even got halfway through the first movie, my 3-year-old daughter (who has Down syndrome) was drenched, crying, and scared. My 4-year-old son, who has terrible allergies and skin issues, was very uncomfortable and crying because he wanted to go home and crying because he wanted to stay. Sadly, we left; pajamas never unpacked.

Just wanted to let you know. I’m really disappointed because this is such a great place you have and everyone was extremely friendly.

Regards,

Well, I was going to paste the reply here, but evidently I was upset and deleted it. It basically said that yes, like all drive in movie theaters, they do not allow idling due to noise and exhaust and they wish me the best. That was it. I’m not exaggerating.

What? Okay, maybe you can’t offer me an air conditioned sky box for my children, but did the answer have to be so black and white? What about parking behind everyone in the very, very back so that the “noise and exhaust” won’t bother anyone? Okay, maybe you don’t have a solution, but at the absolute very least, some empathy would have been appropriate. Because not only will I not be coming back, but I am now telling all of my friends that you could not even offer an, “I’m sorry that you could not enjoy the evening you had been planning for a week. I hope your children recovered quickly, but I am sorry we cannot accommodate people with special temperature needs. But, thank you for driving an hour to spend $45.00 just to eat some soggy hot dogs.”

I don’t even like hot dogs. Now, I’m not too fond of Goochland, Virginia either.

less than 3 years old = 2 1/2 hour IEP meeting

My lovely daughter’s second IEP (Individualized Education Program.. not plan, as many people, including educators, mistakenly call it) meeting finished about 30 minutes ago. Problem was that it lasted 2 1/2 hours when it could have lasted less than 30 minutes. (For anyone who does not know, my daughter has Down syndrome and is in public special education preschool.)

As a special educator who has been to meetings lasting up to 5 hours, I really feel apprehension going into these meetings. Okay, I probably have a touch of Post Traumatic Stress Disorder from them and feel a little like I would right before the dentist wants to use a drill in my mouth. Everyone has an agenda but no one is sharing anything more than they must. That is why I take an advocate with me. Although I am very familiar with special education laws, the advocates will bring the law books with them, and years of knowledge and experience that go a long way. 

Parents: Please never, ever, ever assume that the people who are representing the public school systems completely know what they are talking about.  Before the meeting, I showed the advocates the progress notes that were given to me late last week. Many of the goals showed SP for sufficient progress but gave details that told me that they were emerging. SP should only be used if the goal is expected to be reached by the end of the IEP. Well, the end was today. Someone representing the school system’s special education department did not understand that and still does not. Even as a special educator who has written and worked with many IEPs, she wouldn’t listen to me; it took advocates to quote law to get them to change the progress and I still think she doesn’t get it but did it only so we could move on with the meeting.

I am not going to go into any detail about all of her goals and objectives. I still don’t understand why everything has to be reviewed verbally when everyone has had much time to read it beforehand. The main things I wanted from this meeting were increased speech therapy services and extended school year approval. The speech therapist was very quick to increase the time. The ESY took a lot longer to get, but we did. I’m happy now. I pick my battles because I’m not one of those parents who wants to complain about every little thing. She’s not even 3; if you want to have a goal to increase her scribbling, that’s just fine with me.

Here is how an IEP meeting should go:

1. We’ve all met before, so let’s skip the introductions.
2. We’ve all had time to read her present level of performance. Any questions?
3. Her progress notes were sent home ___ days/weeks ago. Any questions or concerns?
4. Do you agree with the new goals?
5. Does she need any special accommodations that we have not discussed?
6. Are you in agreement with the types of services and number of hours of each?
7. Of course, she’s not even THREE so we can just skip the pages about transitioning and SOLs or alternative testing.
8. Anything else?
9. Sign here, initial here and here. Let us know if you have any concerns and we will see you next time!

I would be wrong not to mention that my daughter’s advocate is her “adopted” grandmother/godmother and that she makes most school systems in Virginia shudder when they hear her name. Bringing “granddaddy”, a retired CEO who is also a strong life-long advocate for children, certainly helps. If you live in Virginia and need any advice, support, advocacy, or testing, let me know and I will share contact information.

Next time, in hopes to speed things up a little, I’m going to take my daughter with me…. with an empty stomach.

five medications and one plastic bubble later…

Yeah, I’m old enough to remember when John Travolta starred in “The Boy in the Plastic Bubble.” I think I even saw it in the movie theatre and I definitely remember seeing it on TV since then. I can’t get that image out of my head after taking my son to the allergy doctor today. My image is a little different, though; I don’t see him stuck in his room surrounded by plastic, but more like in a hard plastic hamster ball running through the yard.

We found out very early that he is allergic to peanuts, cashews, cats, and dogs. The constant, neverending eczema made me suspicious of possible allergens, such as pollen. Pollen wasn’t found as a problem back then; however, after his eyes were red and almost swollen shut a few weeks ago with little yellow, pollen-filled droplets running down his face, I thought maybe it was time to check again. Who knows, maybe this time they would find out that the peanut thing was a fluke and I could realize my dream of giving him endless lunches of peanut butter and jelly. No such luck.

After hearing about my son’s past issues and diagnoses and his current symptoms, the doctor decided what exactly to check for this time: anything found as an allergen to him in the past and all common allergens found inside or outside. I must stop to comment that the way they perform allergy testing has changed so much just in the past two years. Instead of using little needles, everything is plastic and does not even break the skin. Wow.. one crisis averted! Anyway, my son laughed all through the little ”pokes” because it tickled. Before the nurse was finished, though, he was already trying to get his hand back there to scratch. “Mommy, let go of my haaaaaaands!” My heart was breaking a little. The nurse left and I had the job of keeping him distracted so that he did not scratch. When the doctor came in a few minutes later, he said, “You still have 8 minutes left, but he doesn’t need them.” My son was covered in welts because he was allergic to every single thing that they checked, except for one secondary mold category. ”This big one here is because he still has the peanut allergy.”

And not just that, but more nuts were added to the list. Every tree and grass pollen, ragweed (2 kinds!), major molds, dust mites (2 kinds),  cats, and dogs. They even tested for cockroaches! “This doesn’t mean you have them, but they are related to the dust mite allergies.” Well, thank you for telling me I don’t have them because I have not seen one yet and would like to know if we should call an exterminator! Does his back tell you how overdue my cable bill is? Maybe not, but they told me he is allergic to spring AND autumn. Also, just being in the warm weather in any season is going to make the eczema worse.

My sweet little boy is four-years-old. He has been on allergy medicines before but will now have a cabinet dedicated to him. If anyone is interested, his daily medications will be Singulair, Zyrtec, and Nasonex (that one will be especially fun!). He has Desonide for the eczema, which we have been using for too many years already. He also has an eye drop to use daily as needed. Of course, there’s the Epi-pen Jr. for emergencies. His future is full of blood tests to see if he may outgrow some allergies and also the possiblity of regular allergy shots after he turns five. This is all a little overwhelming.

As we left the office, he asked me why we went to the allergy doctor. I answered, “So he could find out what you are allergic to.”  (yeah, I ended that with a preposition..whatever.)

He very defensively responded, “I’m not allergic to nothing!” Less than a minute later he asked, “Mommy, I’m allergic to carrots, right?” Clever.

My sweet boy.

crying on my way home from work (AKA mesothelioma is a cruel b*tch)

First of all, if you are a member of my family, please close this now. The title itself should have caused you to know better than to click and read this entry. Just go now.

Okay, for me and anyone who is still reading, I just want to say I hate that train that drives my thoughts from one to the next. What started out as a very happy thought went to a bad place very quickly. If nothing else, my train moves fast. Anyway, anyone who knows me or pays attention to whatever I post on fb knows that I watch way too much television. Right now, Tuesday is one of the best nights because Glee is back and Lost is finishing its series forever. Looking forward to some quiet time after a day with a bunch of kids (students and my own kids) was nice… until I kept thinking.

I remembered how my step-dad liked to watch Lost but no one, even my mother, really knew it. He had casually mentioned it to me one time. He watched the last season of Lost last year. He even saved a couple of episodes on his TiVo. Not long after that season ended, though, he had a pain in his back that ended up being mesothelioma (basically cancer in the lining of the organs). Unfortunately, he had a high pain tolerance and had no idea anything was wrong. He had a surgery and went through chemotherapy but it did not help. He passed away in December and my husband, children, and I went to Florida to spend some time with my mother and sister. Everyone knows how hard it is to lose a loved one. This man was the best thing that ever happened to my mother. He was kind and strong and understanding. He had a huge heart. As a young boy, he faced nazis in Holland when they came to take away his teacher. He had countless stories from his life, all of which were interesting. If anyone had told me even back in March of last year that he would not be with us on Christmas, I would not have believed it. I still struggle with it and I know my family does, too.

And then there was the TiVo with the Lost episodes.. and he had a “season pass” to a show about fixing boats. Of course he fixed boats.. he could have built a boat if he had all of the parts and probably did at some point, along with cars and computers and many other things. Anyway, I had to delete the shows from the TiVo and the season pass. My mother probably still doesn’t know how to use it, but I didn’t want her to see those shows, especially the ones that would have continued taping with the season pass. I deleted them. It did not feel good.

So, he never got to see the final season of Lost. He left us way too soon and some days it just hits me. Today it hit me so suddenly and so hard that I had to sit in my car for a while before I could go into the store. As much as it all hurt, I know it’s a good thing. I have to stop sometimes and remember that I am human.. I really am.

a message to all mothers, fathers, grandparents, or relatives of children with Down syndrome

As I was just posting a message to someone on Facebook commenting on how beautiful her daughter is, I wondered to myself if I sounded like a lunatic. Although this woman does not know me, she is listed on my friend list. She is one of about 100 people I have added simply because we both have a child with Down syndrome. I started off with two friends and the network has multiplied and hopefully will continue to grow. Although I named this group “mommies,” it includes dads, grandparents, and even some adults with Down syndrome. I wish I could get to know each and every family and have our children meet for “play dates.” I’m lucky, though, to find a few minutes to enjoy seeing pictures of these very special famillies with their beautiful children and reading about their challenges and successes.

I answered my own question about sounding like a lunatic with a “no.” Evidently I have a sense of entitlement. In my mind, I guess, all of these people are like extended family members. We are like one big safe network of families and I feel like I can give compliments, comments, and the occasional well-meaning advice. Would I feel comfortable doing this with other people I don’t really know? Ummm, no!

Now, the day I walked up to a woman with a young girl with Down syndrome in the store.. that was not as comfortable at first but I really wanted to meet them! What we have in common is so rare and so special. I was so glad I did, too.

What I am wondering is if other parents share my feeling of community and “entitlement.” I refuse to believe I am a lunatic.. at least about this!

Thank you for reading and for being on my friend list! And a special thank you to JE for introducing me to all of these wonderful families.

and so it begins…

It took me quite a while to decide which blog site to use and I am still not 100% sure this is the one. But it doesn’t matter. I like the themes, I like that it links easily to fb. I’m not sure if I like, or even understand, the security.

I don’t have any expectations about many people reading this regularly. I don’t expect the world to care what I have to say, but I am going to say it anyway. I’m a woman, a mother, a teacher, a tv “addict” and, unfortunately, a cynic. Bad grammar and punctuation drives me crazy in my professional world but not on social networks or blogs. Typos are understandable; not correcting someone who misspells the same word over and over again is very hard for me, but I guess that’s my personal problem.

I’m not always a nice person. You know the person who says everything that others are thinking? Well, I’m usually the one thinking it and have to hold myself back sometimes. I probably won’t be doing that so much here.

My blogs will probably be about things that are on my mind, every day life situations that are meaningful or just not what was expected, things that are bothering me, my husband and children, and television. I reserve the right to change these topics at anytime. I probably will, too, depending on what’s going on and what time of day it happens to be when I’m typing. If I can ever figure out the security of it all, that will definitely help, too. I just want to know who is reading.

Thanks for reading my introduction.

life without peanut butter and jelly

So my son is allergic to peanuts and cashews. This is one of the deadliest allergies out there. We found this out after testing a couple of years ago. Ever since then, we have had to be ridiculously crazy about checking the ingredients in everything. Other than the products that blatantly contain nuts, there are also those that “may” contain nuts and those that “may have been” or “have been” processed on equipment that also processed items with nuts.

This makes gatherings especially fun. I once said, “He can’t have that ice cream because it has nuts in it.” The response was, “No, it just has peanut butter.” Easter is also a lot harder. Almost everything for Easter is life-threatening at my house. My solution? Just a little bit of candy, a couple of movies, and a few toys in the basket. Thank goodness for Hershey products because, so far, they have been the safest. Plain Hershey chocolate, including Kisses, seem to be processed completely away from their products with nuts. Plain M & Ms have worked, too.

My daughter has not been tested yet but we treat her as if she has the allergy in the meantime. Last week, I sent a note to her preschool classroom reminding them to please not send home anything with nuts, made near nuts, or that even possibly looked at a nut. (I must mention that her teacher and the school staff are excellent with her and have helped her progress so much..) The result? A basketful of candy and toys, including Butterfinger eggs and a chocolate bunny that may contain nuts. Nice. Of course, since I do not have my new bifocals yet.. bifocals.. I had a hard time seeing the small print on the Butterfinger foil wrappers. The next result? My son simply put his hand in the basket and had a very bad breakout on his forehead that was really scary, especially since his eyes were red and swollen from all of the lovely pollen that waited for my spring break to begin. The doctor wanted him on steroids, but he proceeded to vomit on the kitchen floor four times after only tasting the medication.

Two new medications later, he is having repeat allergy testing in a couple of weeks (anyone want to take him to this?) My daughter will be next. My dream is for everything to be negative so they can enjoy a life of peanut butter and jelly. But they both have to be negative to even have it in the house.

The message in all of this? Butterfinger candies contain peanut butter. Please know this, especially if I have entrusted you with my children’s lives for part of the day.