Rachel Alayon

Let’s Talk About Accommodations for School

Ladies and Gentlemen,

Please excuse me…I have to get this off my chest. It is eating me up inside. So, if it sounds like I am yelling, I am on the inside, I probably should be on the outside.

I got a call today from a counselor. Lovely lady whom I have had the pleasure to work with at another school. She called to tell me (a day after open house) that the parent of soandso was in her office and that the teachers are not giving her daughter the 504 accommodations from the memo I sent out two weeks ago. I asked the counselor to please ask the parent if the student has spoken to the teacher (this is self advocacy) about the issue? Has mom spoken or emailed the teacher? The answer was no.

Now the next part I am going to type is what when through my mind in a flash. This child is not diabetic, nor does she suffer from seizures. She has ADD or some form of it. She is to get extended time on assignments, frequent breaks and extended time on tests. I did the memo, I made sure each teacher, testing chair, counselor and administrators got a copy. I deal with students who can’t even say their name or feed themselves and this child is whining about a break? I have a break for her. Additionally, in the real world, no one cares!!! It is not my job to make the teacher read the memo, nor to check the classroom to see if the teacher is following the suggested accommodations. A 504 case is not worth my effort. I just spent 6 years getting disability on my husband and in the process working so hard that I am now so ill I will probably die before I can enjoy any of his money. And this girl who can walk, talk, eat, drink and go to the bathroom with a normal IQ is worried about her accommodations!! Give me a break. I am not paid enough for that.

I calmly told the counselor that there was a hierarchy of contact that needed to be made. The child must first advocate for herself. Then, when that fails, mom needs to speak to the teacher. When that fails, mom can speak to the counselor or get an administrator involved. This office only provides the 504 and memos.

The counselor said thank you.

I just put my head in my hands and thought, are we raising a bunch of victims? Has the food become so poisoned that everyone is handicapped in some way?

I just spent a year going through the process of trying to find out what is wrong with me(still don’t know completely). I had to apply for a disabled parking pass, buss pass and working accommodations. I had to jump through hoops to get those. Then there are the loops and hoops and red tape I jumped through to help my husband and daughter and still jumping.

I so wanted to stomp over to the office and tell the girl to put her big panties on and stop whining, and give her a tour of my most special students who REALLY NEED ACCOMMODATIONS. I restrained myself. Also, if the parent was so concerned, why didn’t she ask to speak to the teacher last night at open house.

Parents – teach your children how to talk to teachers nicely. Teach them that the real world is mean and most people don’t care you have a problem. They look on the outside and see a perfectly healthy person. You either accept that or not.

I know I am not doing well

Due to last weeks adventures with the doctors, this is what I just posted to my school professors….Understand that my heart is tender at this point. I was hoping to be almost back to normal. I am not.

Dear Professor,

As you know I have a condition that has caused me to get accommodations through Kaplan’s disability. This means lots of doctor appointments, medication and therapies.

In a recent visit, it has been determined that my drug therapy has slowed my degradation, but not to where I can remain totally functional. The doctors have decided until I get some tests done before determining which drugs to try next. These will be scattered over the next couple of months.

The reality is that I am not getting better. I am finding it harder and harder to concentrate and the pain and exhaustion is unrelenting sometimes. I am determined to finish school. I have only one more class after this term. The capstone.

I will do my best to meet all your deadlines and provide professional work. In the event I am late, please allow me the standard allowance. I am determined not to turn in anything late anymore. I will strive towards that goal.

Everyone asks me if I will leave my job when I finish school. At this point, I think I will be happy to finish school, celebrate, and be happy I have a job that I can do with my condition as it is now. I had high dreams when I started this journey with Kaplan University. I have had wonderful teachers every single class. Including you. The reality is that I really don’t know how much longer I will be able to work.

I have remained in contact with my education advisor. She is aware that I am contacting you regarding my illness.

Thank you so much for your valuable time.

May you have a wonderful day.

Let’s Talk BBQ

As I ponder these last two days with opening of schools, I could sit here and rant about the overprotective extremely dramatic parents of the students I serve. I could even go on about the shortage of teachers and bus drivers. Not tonight.

I am enjoying the fruits of my Sunday labors. I have plate of bbq ribs, mashed potatoes made with real cream and a glass of club soda. These are all things that were given to me from the food bank I volunteer at. I am so grateful that I am able to participate still.

Getting back to the Q in the barbe. It just never ceases to amaze me how good food tastes on grill. Especially wood grills. Yum. I am no expert. But, I really like it. From chicken to fish and ribs and beef and grilled veggies.

I want to thank God for creating that for us. If He hadn’t requested burnt offerings on His altars, we would have never probably done it for ourselves. I can only imagine the aromas of cooking meat coming from traveling temple’s courtyard when livestock was offered. Only the best, of course.

Growing up I could never understand why Dad was so excited for summer. Living in a colder climate, bbq is only during those few short months. Yes, there was the broiler, but it just wasn’t the same. Now, they have all those fancy gadgets that you can grill inside. I tell you, it still isn’t the same. I know mom hated it because that meant she had to clean out the ashes afterwards. Either way, most of us looked forward to grilled chicken drumsticks, hamburgers and hot dogs from the grill. I personally preferred the toasting marshmallows afterwards.

Living in South Florida, we can grill all year around. Also, with the portable propane tanks, grilling can go anywhere. When my children were little and we owned a home with a small back yard. I grilled a lot. I usually grilled a week’s worth of meat. I had chicken on area, sausages in another and maybe steak or hamburgers in another section. I even grilled a whole turkey one year. That was a fail. We even got the rotisserie that attached to the grill. The best roast or chicken ever!!!

My dad used to be a meat inspector. He did complain about ribs. Said they were too much work for so little meat. So, we really never had any except from the Chinese place. You know, those little two inch things in some red sticky sauce. I was introduced to real ribs here in Florida. The softest, most tender meat is between the ribs. I understand why people like them so much. They are even easy to cook if you don’t have bbq. I find I just throw them in a crock pot on low with all the seasonings and sauce I like. Come home from work and dinner is ready!

Crock pot cooking……conversation for another day.

I just wanted to tell you to go to Aldi’s (or any other grocery store) and get a nice section of ribs. Rub your favorite seasonings on them or not. I use the disposable liners for my crock pot or you can use spray oil to make clean up a little easier. Place the rib rack on its ends and curl around. If separate ribs, lay in tic tac toe design. Pour your favorite BBQ sauce over it. Set it on low and forget it for 6-8 hours. I have also used my dutch oven on 250 with the ribs in an oven for those who don’t have the luxury of a crock pot. Keep the lid on and only cook for 4 hours.

Either way you like your ribs. Enjoy, smile and understand God knew what He was asking for with the burnt offerings.

Going SWOT (Strengths, Weaknesses, Opportunities and Threats)

I am feeling a little depressed tonight. I just finished a personal SWOT analysis for one of my management classes to finish my degree. This is a higher level class and part of it will be doing an objective/goal resume that is only one page. Part of this process includes doing this analysis.

I find that through the last several months, as I have done this process several times, is the uncertainty of my health. My health progression has slowed down, but not stopped. So, why bother doing this analysis if I may be on disability in the next year? I keep asking myself that. I guess I am an extreme optimist or self punisher. Mostly, I think it is hope. I don’t want to get my bachelor’s that I have worked my ass off for to have it just sit on the wall and not get used.

Another problem is my lack of spanish. I don’t know about you. Last time I looked, Florida was part of the US and English is the primary language. Who do these immigrants think they are fooling by not learning English? Don’t they realize that they can’t really go anywhere outside of Dade and Broward county if they don’t learn English. Even in Texas and Southern California where more Mexican style of spanish is spoken, the majority of the immigrants speak enough English to communicate their needs. Not here….Most of them assume I speak spanish and that I am from Cuba. I am so Rocky Mountain, you can’t get much more Heinze 57 mix American than me. I don’t even look hispanic. Yet, everyone wonders if I came from Venezuela. Really? Just how much lead did you get as a child? I have learned some key phrases and numbers as needed for my job. But, you came here to have a better life. Learning a new language is part of that change. My phone message isn’t even in spanish.

I personally think that the main office loves it when I cover for the receptionist just so they can hear me tell almost 90% of the phone callers I don’t speak spanish.

Getting back to the point of this post, I find a lot of my goals and objectives revolving around me finishing school. It is done in December. But, some days it seems like an eternity when looking for prospective jobs. Other days, it seems just around the corner and I am excited.

My health is holding me back this very week from applying for a couple of jobs. I don’t know if a new employer would be willing to put up with all my doctor appointments. I know that they have to put up with my disability accommodations, they aren’t extravagant. I can still sit at a desk, type my heart out, organize meetings, arrange calendars and answer the phones while pouring coffee and assisting a customer.

Then there is Daisy. My munchkin. Would a new employer be willling to allow me to bring her to work as an ESA? I know I would just have to ask. But, I get to do that now.

What about the money? I really could use the money. But, would making more really make me happier? Will my husband’s disabilty check make it feasable for me to stay at my current position?

These are all things God and I are going to have work out. Actually, that I am going to have to take His guidance on. May my ears and mind be open to His shepherding.

Time Management Tips

As I was reviewing my grades for this last term of classes (99.5% and a 98.9%), I imagined myself talking to others who plan to go back to school or start college. I have spent the last two years juggling 4-5 jobs (one full time), my husband’s care, my daughter’s care and my health crisis. I have been able to go to the doctors, go on dinners with friends, fit in a few massages and even watch movies during this time. I was able to get my work in on time and with good grades. Admittedly, some classes were easier than others. But, committing to taking classes online is a bigger endeavor than people think.

Commit yourself to doing it.
Follow the class syllabus.
Look ahead through the course and see the assignments and the lengths.
1. Playing off of that, schedule your doctor appointments around class breaks or lighter weeks
Set a schedule for when things should be done during the week. Example; Classes are Wednesday through Tuesdays for me. All reading is to be done by Thursday and first Discussion Boards posts done. Friday, reply to other posts on Discussion Board(DB). Saturday, second reply to DBs. Saturday, work on one paper, research another. Sunday, breathe and rest (I also work that day). Monday is for reviewing and submitting one assigment/exam, then research and type up another. Tuesday, submit all assignments after reviewing. Start Reading next week’s text.
Try to always stick to that schedule. It is strict, but it works. Since I work a normal M-F week and then church and volunteer job on Sundays. My Saturdays end up being my homework heavy day.
Communicate to family and friends that this schedule is not flexible and that this is a goal. There will be time off in between courses and sessions that they can have your undivided time. I let my friends and family know two weeks out when I have a break so that we can set dates to play, eat and hang out.
Remind your family and friends of this committment each term. This is temporary. There is an end in sight and there is a reward at the end.
Time mangement, time management, time management. If you are unable to finish the reading for a class, skim it and take notes. Go back later in the week and read it thoroughly if possible. I will be honest, there was some reading I just never made it to.
Take care of your health. Getting sick makes focusing hard and doing assignments unbearable. Get the flu shot, take your vitamins and get sleep at night.
If you are the primary care taker of the house, invest in a crock pot. It has become my favorite appliance. I plop everything I need for dinner in it in the morning, put it on low, and return home to meal ready to serve. Buy sandwich materials and cold cereals for those days you don’t have time to cook. Macaroni and cheese or any pasta dish is easy to make. Again, crock pot your own homemade sauce if you have allergies that need to be worked around.
Remind your friends and family of your committment to this endeavor. Enlist cheerleaders to help you through those rough weeks.
Turn your cell phone off during exams and webinars. Texting and phone calls need to be avoided during these concentration times. If they are interested, they will leave a message and wait for you to get back to them.

I know I keep putting in about reminding family and friends. I can not express it enough. People forget.

Most of all, put each day before God. Ask Him to help you through your assignments, exams and reading. Sometimes it is the only way. He always has time for you.

Sicker than I feel

Alright, I did this aerial yoga class. I thought that would be a great idea. I wouldn’t have to worry about getting up and off the floor. Everything would be done in a silk hammock swing thing.

Boy was I wrong. It was the hardest exercise I have ever tried. I was soaked through within 5 minutes. The poor instructor had to stop every few minutes to help me, and sometimes even she gave up on me.

I was so proud of my self this summer. I could do 10 push ups, 40 squats, 65 leg lifts and walk up to 7 blocks. I really thought I was pushing myself. After taking this class, I see that I am not where I think I am.

I should be better. Yet, the reality is that the medicine has slowed my decline, but has not arrested it. Nor has it made it better like predicted.

Of course, the instructor stated after the class and I was about ready to cry, that I would probably like a different class that was more relaxing and less difficult. I wanted to strangle her at that point. I had told her during my reservation that I was not well and was looking to the yoga to help me. I have taken regular yoga in the past and wanted to try something new. I asked her why she had recommended the class that she had, she just said that all first timers are recommended to go to that class.

Well, I might be back. I like the studio, the smell and the attention of the instructor. I did tell her that it probably wouldn’t be until January after I finish my classes. (Christmas EVE everyone!!!) I was told to take the radio frequency class. It uses the sling, but lower to the floor and more floor exercises. I have a break again at the beginning of October. I might pay for that class then. It will give more time to hunt down other yoga classes.

In the mean time, I am fighting depression again. I just want to stay in bed and let the world pass by. But, Daisy has to go out. She loves me and even makes me smile when all I want to do is scream at the world.

I am glad that I did try it though. It was a good reality check. The reality is that I might not get stronger, might not get better, today may be as good as it gets and the first diagnosis of dying in 5-8 years may be the real outcome of this adventure. Either way, I will do my best and be grateful for each day God grants me and try to find a silver lining in everything. Also, I slept really well last night after the yoga. I forgot how nice it made me feel.

I might have to rig something up in the bedroom so that I can do my Rodney Yee discs I bought about 10 years ago. At least it will keep me limber and help me sleep when it eludes me.

Some Relationships Last

I have been reminded lately that some relationships last beyond a piece of paper or what others think.

A friend of mine, her ex-husband died yesterday. She was at his side throughout this last month every day. She was there when he finally passed. Did she harbor animosity towards him? I think not. She took vacations with him with the grandchildren. Her son and daughter still had a good relationship with him. I don’t know the story behind the divorce. Nor does it really matter.

It matters that she cared enough to be there in the end for him.

In discussing this with my son, he asked my why I had not left Dad. He said that many other women would have left a lot sooner. I explained that I had visited an attorney in the beginning when he first became mentally ill. I was informed that leaving him would not look good in courts due to his disability and judgement would be for me to pay alimony. Additionally, when we got married, we promised to never get divorced. That promise was between us and God. Have we threatened to get divorced from each other? Yes. As I tried to explain to my son, which I know he does not understand because it is a relational issue that has to be experienced. It just didn’t make financial sense at the time. God has in the mean time tempered my heart to be more understanding and deal with his idiosyncracies.

It is through this process that I have understood that getting a divorce would not have made anything better. The years have made me stronger. This is a hard concept to convey without the other person having gone through it themselves.

So, if you hear of a friend being cordial to their ex, be a little understanding. There is a relational bond there that you and I may not understand.

Reality Check!

So, today being the first day of summer break, I started it off with pulmonary labs at the UM. I guess maybe I should have given myself a day off before doing that.

I was at the UM as requested and processed through admissions. I was then instructed on how to get to the 4th floor for testing. The normal spirometry was done.

Then the 6 minute walking test. Now, understand I have had these before. One last fall, where in 4 minutes I was below 90%. Another this last spring where I did not go below 93% oxygen. So, to my surprise, after 6 minutes of walking I was at 80% and my fingertips were blue again. At least now I know what blue fingertips mean….I need oxygen. As soon as they put me on the oxygen I went up 100% immediately within a minute. So, I was instructed to do the test again with oxygen. I immediately dropped to 89% and stayed there the whole time even dragging an oxygen tank behind me. The technician said I was at the border of 90%. The doctor will have to decide about any further action.

Here I was thinking I have been on meds for a while now, feeling good, looking good. I should be able to breeze through this. WRONG!

I know I am not a doctor. But, this is bad. I am worse than when I took this test last September. I am suppose to be getting better. I feel better.

Next round is blood work on Friday. Then the following week has me seeing a sleep study expert to see if my oxygen problem is sleep apnea related or just scar tissue related. (I think I already know the answer to this one. But the sleep apnea machine is cheaper in the long run.) Then it is back to the main doc the very next day for consultation.

It looks like I might need to order a tank for hurricane season to have in the event we lose power this summer. So far, I only use the oxygen at night. It looks like I really need it when I am walking. How depressing.

I was looking forward to walking in a 5 K this fall. I guess I set my hopes to high.

The Date Is Here!

I have mentioned before that I have been struggling while waiting on the court date for my husband for disability. Well, it is here (about two weeks out). We, and I say we, have spent the last two weeks running to the VA to get paperwork filled out. Now we will spend the next two weeks doing it again, because the physicians don’t want to fill it out without him present. I understand that part. But, do they understand that I have to be dragged along each time? I am sure they don’t. I did tell the attorney that though.

This has caused my condition to flare up. I have been exhausted no matter how much I sleep and my back arthritis has returned. The timing of the court date was perfect and not so perfect. I am out for summer, so this works to my advantage. The not so perfect part is that I have had to pack up my office for construction while worrying about my doctor appointments and finding time to run him to the VA for everything.

My hopes are that the judge will give him the full amount. At this point, I would be happy with almost anything, as long as it makes it easier to pay the bills.

I will be done with school by December 24th. At that point, I will be open to new opportunities with the educational system or somewhere else. I will let God guide me to where I need to be.

I will let God be the final say about my husband’s disability. I will have to be content with whatever is decided.

I have Survived-Graciousness

Okay, I have been thinking about this past year. It has been an interesting one to say the least…

In the last twelve months…

I have had a forever cold which wasn’t a cold.

I have survived several sets of unknown fevers only to find out the fevers were scar tissue expanding in my lungs.

I was told I might have 5 years to live.

I finished another year of school.

I have been told I have Lupus.

I have been told I have Sjogren’s Syndrome.

I had my fingers and lips turn blue every day for over a month.

I prepared for my death and what I would be leaving behind.

I was denied an advancement in my job.

I have been told I can’t leave my job.

Trying on clothes is exhausting, so I can no longer shop in the malls.

Walking more than 5 blocks seems impossible.

I had to beg my husband to cash in his retirement to ease my comfort driving.

But, through all this….I have had never ending prayers from church friends, leadership, work friends and family. I am sure even a few strangers have prayed for me.

I have believed that God has a plan for me. I have seen provisions when I thought I was at the end of my rope. Groceries have been provided when the refrigerator was empty. Friends have taken me out when I was at my lowest emotionally. Miracles surprise me each and every day. Even if it is just the sound of bird song at 5:30 am while I am walking Daisy.

There are some hurdles still. In fact, I don’t expect the list of hurdles to get smaller. God likes me in prayer mode. So, having struggles keeps me on my knees.

Upcoming hurdles that I am struggling with prayer wise-

Court date for disability for my husband. I know what I want. I just don’t know what God wants for our family. I have to believe God will continue to provide for our family.

I need to expand my exercise routine while avoiding sun exposure (due to medication). Have you seen where I live? I live in Florida!!! Sunshine state!! Looks like the 6:30 am walks will be in order for this summer. I have to believe that God will give me the strength to do this.

College ends Christmas eve. What a nice Christmas present! A Bachelor’s degree! But, then what? Should I look for a different job? Should I stay? Does this all depend upon what happens with my husband? What doors will God open up for me with this degree? I have to believe that God has something incredible for me this upcoming year after I finish school.

My sister is ill. I want to go spend time with her. Yet, due to my medication, travelling is another hurdle. I have to believe I will get to a place in my treatment plan that I can go see her with the least amount of complications. Only God can make that happen at this point.

Ultimately…I have to Believe God will see me through Everything.