Just living my life, and making it work!

Archive for May, 2012

Goodbye Private School

Last Friday was my oldest daughter’s last day of Kindergarden. It was also her last day attending a small Christian school that she has spent the last three years attending. ( she did Pre-K twice because she has a very late birthday.) We loved her school, and planned on her going there all the way through eighth grade. I thought she’d be fine without a low vision program. Sure there would be some accommodations that she’d need, but I thought her dad and i could fill in the gaps. After all, we were both blind students, and my husband has a vocational rehab degree.

When she started school at age 4 she was “dually enrolled” in both private, and public school. That meant she would attend Strickland Christian school, and would have a low vision teacher from AISD working with her. However, at five she could no longer receive services from AISD, because the dual enrollment program is only for 3 and 4 year olds.Since she seemed to be doing OK, we thought things would work out at Strickland. Kindergarden was a little rough in the beginning. There was more being taught on the chalk board, and there were lots of small print wall charts to follow. By the end of the year she was rocking it out, but we could tell it was taking her longer to understand the content that was visually presented. She would probably fall behind in first grade if things stayed the same. especially given the fast pace of a private prep school.

I remembered when she turned five an AISD employee told me there was a program that provided some special education services to private and homeschool kids call Proportionate Share. I called the woman in charge of that program, but never received the application she was supposed to mail me. I requested it three times directly from the woman in charge. She told me over the phone that AISD could provide a low vision teacher for my daughter, BUT THAT TEACHER COULDN’T MEET WITH MY DAUGHTER AT HER PRIVATE SCHOOL OR DURING SCHOOL HOURS. What good would that be?!?!?! Soooo I just decided it is more trouble than it was worth as they wouldn’t really be helping my child, and I let it go.

However, I decided to try the program again once I realized she needed a low vision teacher. I found out that the original person I spoke to was retired, and someone more competent was running the program. For half a second I felt encouraged that I might be able to keep my daughter in Strickland. Then I received a letter in the mail stating that all the funds for this program had been expended for the year, and I would be put on a waiting list for next year. What?!?! If I had moved into the district the school wouldn’t be able to say ” sorry, we’re out of money this year. Your kid is SOL” They would have to get it together, and find her a low vision teacher. I pay my school taxes just like everyone else. I am not expecting them to pay for low vision aids, glasses, or anything. I just need a low vision teacher once a month to evaluate the classroom, and make recommendations. Ugggh !!!

Like i said, I pay my taxes, so the State & Feds should be able to trickle that money down to AISD as needed. After all, they do provide the extra money for supports for public school kids. I looked online, and the government funds the Proportionate Share program through an impossible to understand equation that provides far less money than is needed. Why can’t they provide these support services to everyone if they HAVE TO for the 3 and 4 year olds? This is nothing more than a thinly veiled attempt for the TEA to appear to be serving all special needs children without coughing up the real dollar amount to do so. This policy has essentially taken away my choice as a parent to provide a Christian education for my children.

All of this left me with two choices. I could stay at Strickland, fight it out with the government, and hope I can get a VI teacher. All the while my child falls further and further behind. Or, I could send my kid to public school. While I am not one to back down from a fight, and you better believe there will be a letter sent to several people, I can’t let my kid fall behind. I am loath to send her to public school, but I have faith that God will work it all out.


A Mother’s Legacy

Mother’s Day is the most difficult day of the year for me. Yes I have three beautiful children that I love so much. However, all the Hallmark commercials and gift displays are a constant reminder that my own mother isn’t here. In Jan of 2010 she died of complications due to pancreatic cancer. I miss her every day, but God’s grace and the promis of salvation fills the gaping hole in my life.

My mother was a remarkable person, and there are many wonderful things I could say about who she was. One of the things I loved about her, and enjoined most as a kid was she was always crafting. She and her friends would get together, and make the cutest stuff. Sometimes she would let me help, and sometimes we would just sit and talk while I watched her work. She was very creative, and dabbled in everything from ceramics painting to sewing to holiday decoration making. As you can imagine my mom had a ton off supplies and tools laying around.

In an effort to organize her craft stash she bought an old card catalogue. I was with my parents when they happened upon it in the corner of a dusty antique shop. It was one of those times when you don’t know you need something, but once you see it you have to have it. I loved it too. My mom and I also shared a love of organization, and anything you can put other stuff in. This would be the perfect addition to her craft room.

When she died it was one of three things I wanted from her house. You can imagine my heartbreak when I found it in a hundred pieces in a box in the garage. I brought it home on the off chance that I could find someone to restore it. Well long story short it took two years, a couple of awesome friends, many hours, and some cursing, but….. It was finally finished today…..on Mother’s Day. I cannot wait to fill it with my craft stash. Not only because it is really cool, but mostly because it is a symbol of all the wonderful times I spent crafting with my mom. In fact the last time we were together before she got very sick from chemo we spent crafting. We made some adorable spiders for some Halloween gift bags.

I come from a long line of very talented and creative women on both sides. Now it is my turn to be the mom, and I look forward to many years of crafting for and with my kids.

Looking Through The Right Side

Yesterday was one of THOSE days. What for most people would have been a simple trip to the doctor’s turned into a seven hour fiasco. My son had a low vision evaluation at a doctor’s office that according to my Map App was 16 miles away. It would have taken a driver about 35 minutes to drive from my house. It took me 2 hours 20 minutes on the bus. It would have taken me twenty minutes less, but I had never been there before. It took me an extra 20 minutes to find the place, because I cannot see the store signs from the street, and there were several small office buildings in the area. I had to walk up to each one before happening on the right place.

Once I realized I was going to be a little late I called the office. The receptionist told me it was ok, but when I finally found the place the first thing she said was I’d have to reschedule. After threatening not to come back, begging, and admittedly a few tears she worked us in. The low vision evaluation went perfectly. The doctor recommended glasses, a magnifier, and a monocular. A monocular is just like a set of binoculars except you only look through it with one eye, and the magnification is less. It will let him see things in the near distance like the chalkboard.

After a quick trip to the cookie store next door we were headed home. I let my son walk the half mile back to the bus stop as he was about to sit on the bus for nearly two hours. There was one bus transfer, and the timing looked like it was about perfect. We passed the 15 minute wait by eating some snacks, and singing silly songs. When it came closer to the time that the bus should get there I folded the stroller up, and got everything ready. The bus was a few minutes late, and I was starting to worry that I might not make the connection. Suddenly the bus came around the corner, and blew right passed us!!! The next bus wouldn’t be there for another 50 minutes!!! I cannot wait that long because I have to be home when my daughter’s teacher drops her off. I normally would have just put her into aftercare, but it was threatening storms that day. I would have had to possibly walk nearly a mile in the rain home. Uuummmm NO.

Sooo I decided to call a cab. I didn’t have an address so they wouldn’t send a cab. I walked my happy butt down the street until I found an address on a mail box. 45 minutes later the cab calls me to say he cannot find my exact location, and asked for directions. Mind you this is a strange neighborhood that I know nothing about. In fact I’ve been waiting in front of a stranger’s house for almost an hour now! Cute, I know. Sooo I give the driver the intersection where I was waiting for the bus. Thankfully he knows where that is, and I walk my even happier butt back up to where I was ORIGINALLY.

I load us up, and $50 later we are home. Right about now you’re probably thinking it was a really sucky day, and for sure it was very frustrating. However, if you change your perspective it was a pretty good day. First, I spent several hours of travel time giving my undivided attention to my children. We played with flash cards, read books, and played his new LeapPad together. Plus, the clouds above kept us cool without raining. I could have been walking all over creation, and waiting in front of a strange house in the rain. Lastly, for a lot of people I know the $50 cab fair would have come out of the week’s grocery money, or maybe the electric bill. I don’t want to do it anymore than I have to, but we will still have everything we need this month. Oh, and I almost forgot I got a great cookie of it.

The point is life is not always fair, and there are many things that are beyond my control. Often it is all how you look at it. Today when my son looked through the correct end of the monocular things looked bigger, and more clear. If he looked through the wrong end everything looked tiny, and far away. It is the same with our attitude. Sometimes it is easy to see things in a great and clear way. But, sometimes, we just have to be determined to see the good in a situation. The fallowing Bible verse really helps me on days like this one.

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. (1 Thessalonians 5:16-18 NIV)

Just Start a Family Over Again

My birthday is coming up in a couple of days. I’ve been thinking about what it must have been like for my parents when I was born. My mother noticed that I rarely opened my eyes, and she couldn’t tell what color my eyes were. My pediatrition chalked it up to a neurotic first time mom, and she was told not to worry. She went about raising me like any other baby.

For some reason my mom took me to a different doctor when I was about six or seven months old. My father didn’t go with her, because it was supposed to be a routine doctor visit. That morning my mon had no idea that her life would be turned upside down. The doctor came into the examination room, looked at me and said ” Have her eyes always looked like that?”. My mom was relieved that someone else finally noticed, but she wasn’t prepared for what would come next. The doctor left the room without another word. When he returned he matter of factly told my mom that I had Aniridia. He told her that I would be blind, have tumors on my kidneys, be mentally retarded, and have strange kind of growth syndrome. Furthermore he said that I would probably not live to see my fifth birthday. His advice to her was to drop me off at the local state institution, and start a family over again. I was born in the late 1970s, and although some families were starting to keep disabled children at home, many were still being institutionalized.

Can you imagine what my mom must have felt? Here she was thinking that she had the sweetest most perfect baby, and not only was I completely imperfect, but I was likely to die. Of course she called my dad who rushed to pick her up. I can only imagine the conversation my parents had during this day. That night they came to two conclusions. First, God had given me to them. He trusted them to love me, and care for me no matter the circumstance. Second, that I was fearfully and wonderfully made with a purpose. How ever God made me to be my parents knew that He had a plan. They simply decided to trust in the Lord, and take things one day, one milestone at a time.

My mom was a stay at home mom, and spent as much time as she could researching Aniridia. She once showed me stacks of notebooks that were filled with notes. They took me to a specialist that was nearly two hours from our house. They also enrolled me in a baby/ toddler program for kids with developmental disabilities. A precursor to ECI. it became pretty clear that although I had some gross motor issues I was a pretty typical kid. I cannot help but wonder sometimes what if… What if I had had different parents? What if my parents hadn’t trusted and loved God? What if I had been raised in an institution? This always reminds me of Jeremiah 26:11. For I Know the plans I have for you declares the Lord. Plans to prosper you, and not harm you. Plans to give you hope, and a future.