There were also two others, criminals, led with Him to be put to death. And when they had come to the place called Calvary, there they crucified Him, and the criminals, one on the right hand and the other on the left. Then Jesus said, “Father, forgive them, for they do not know what they do.”
And they divided His garments and cast lots. And the people stood looking on. But even the rulers with them sneered, saying, “He saved others; let Him save Himself if He is the Christ, the chosen of God.”
Lately, as I've been sitting in church and listening to sermons, or taking a walk and listening to a podcast, I have been bombarded by messages that make me question my purpose as an advocate for my daughter who has special needs.
I've received the message that God wants us to put others before ourselves.
I've received the message that God wants us to LOVE His people (which includes everyone...even those I may not necessarily "like".)
I've received the message that, when I make the world about ME, I am taking my eyes off God.
Logically I started to question my motives in EVERYTHING.
Is this about me?
Is this just about my kid?
Am I advocating out of FEAR or am I actually making the difference that GOD wants me to make?
Ladies and gentlemen, welcome to The Ring! Tonight we will see the anticipated match-up of Hefty verses Braille. This highly anticipated fight is brought to you after years of training, and lots of education, sweat and tears. The opponents are in their corners and reading to come out swinging; so get ready for an exciting battle.
Bong! Round 1:
I heard it first at the Parents of Visually Impaired Pre-Schoolers conference, "Start Braille early." It will be a challenge, but we need Braille in our arsenal of weapons as our child is at risk of losing her vision.
Jab, jab...
No problem. We have a great system and are already learning tactile discrimination in our home visits from the Vision Specialist.
Thwack...
Easy peasy.
Floored.
Better get some water...I'm already sweating. Bong! Round 2:
Oh, yeah. We are rocking you, Braille! I'm even using sidewalk chalk to make Braille cells in our driveway and having our daughter jump to different letters to show-off her awesome memorization of the Braille code!
Jab, upper-cut...
Another new TVI this year? Hmmm...it's tough to learn when the teacher isn't the same each year...
Wait! It's October now and our daughter hasn't had any Braille services yet this school year?
Ooof! Stars burst in front of my eyes. I shake the cobwebs from my head.
It's okay. It's okay. Just got a phone call and the district finally found a teacher. Her services will start soon again and we'll be caught up.
Saved by the bell.
I need to towel off...the sweat is running into my eyes and I can hardly see straight. That punch landed right where it hurt!
Bong! Round 3:
So, 90 minutes of Braille instruction a week...and it's hard to spread them out because the teachers are pulled to so many schools and over-worked and hard to find, so we're doing ALL 90 minutes at once. How many 6 year olds can stay focused for 90 minutes on BRAILLE?
Ouch! It feels like my nose just exploded. How did I not see that coming?
BUT at least we're getting services, right? I should be happy about that. Grateful.
End of the school year...saved by the bell again.
I stumble to my corner and sit wearily on my stool. This Braille is a tough opponent. I need to build my strategy better. Bong! Round 4:
Yeah...that's right. I'm coming for you Braille. I'm taking a class on-line so I can learn all about you and THEN we'll see who will knock out WHOM!
Got my own slate and stylus. Look at me! I know my stuff! I'm at the head of the class. Now I can help my daughter with her homework and we will be FINE!
Jab, cross, upper-cut.
Boom. Floored ya, Braille.
How you like momma now?
I strut over to my corner; don't even need to sit down, I'm on FIRE!!! Bong! Round 5:
There's my girl...she's getting 30 minutes A DAY of Braille. She still can't read it with her fingers very well, but she's learning the code like a champ! We're Brailling her class Valentines and she's loving it.
Speed Bag...look at us now!
Jab, jab....Jib-Jab!
Hmmm...you're surprisingly strong, my opponent...and we're caught in a CLINCH.
The ref calls it, and we hear the bell.
Bong! Round 6:
New state, new rules. They "suggest" a school for our daughter that has more students who are learning Braille. I say, "No. She's already made friends here, she's already bonded to her teachers. We just moved her half way across the country. No way. That's not inclusion."
Okay then...30 minutes of Braille a week. Wait, a WEEK? Well, ummmm...okay....I guess we'll just work harder at home.
Jab.
Would that type of instruction be acceptable for learning to read print?
Bam!
Would that amount of time be okay regarding any other GENERAL education requirement?
Thwack, wam!
Now we've moved it to 60 minutes every OTHER week?
SLAM!!!!
"She's behind. She's not learning it. She's not practicing."
I'm dizzy. I'm stumbling. I can't form the words that I need to express how I'm feeling.
Saved (?) by the bell....
I crawl to my corner. I'm on the floor with my arm draped on the ropes. My coach is pouring water into my mouth and it runs down my chin and bleeds onto my top.
I should have fought harder. I should not have caved so quickly three years ago. But now it's been three years, and the pattern has been established. NOW, she's having to do so much to stay on top of her other classwork that I don't blame her for not wanting to work on this. Why WOULD she prioritize learning something for a teacher she only sees two times a month at most?
I should have trained harder. I know how to advocate. But, when I'm fighting SO many battles for things like medicaid and good doctors, then some of the battles get written off as "the least of my concerns for now."
A parent responds to my call for help from an on-line support group, "Of course they moved her to 30 minutes a week because no one can learn anything in that time, and eventually you'll stop trying, and THEY can stop teaching it." Another parent says their child had 60 minutes a day at my daughter's age...another says 90 minutes a day. A DAY! "Don't give up on Braille...you can't use technology when the power goes out."
Yes, yes...all so true. And all adding to the cacophony in my brain.
How many times did I get hit? Can I stand up again? I really just want to close my eyes and go to sleep. Bong! Round 7 is about to begin...and I'm spent.
God has been working on me and my patience as I've gotten older. He continues to show me more and more of how foolish I appear when I am angry. A recent sermon that I heard at our church was on the topic of anger and how to rid your life of anger. It was tremendous because the most important thing I gleaned from that sermon was the fact that my ANGER is ALWAYS the band-aid on top of a different emotion.
Take for example my experience recently in trying to start a dialogue with a number of different people in our state assembly or even those in my own city regarding Rare Disease Day. I had sent in my proclamation request to the state in the month of November and had e-mailed a number of different people in the middle of January trying to drum up enthusiasm for the event. However, I found that I wasn't getting responses from anyone!
I was so ANGRY. I had that feeling of, "Of course, here we go...no one cares."
because of the
surpassing worth of knowing Christ Jesus my Lord, for whose sake I have lost
all things.
I consider them garbage,
that I may gain Christ and be found in him, not having a righteousness of my
own that comes from the law,
but that which is through faith in Christ-the
righteousness that comes from God on the basis of faith.
Phil 3: 8-9 NIV
I'm not sure if you've ever watched the movie Monty Python and the Holy Grail,
but one of my favorite parts is when they are trying to cross a bridge
and there is a man drilling them with questions before they are allowed
to pass. The man standing guard always asks the person who is
attempting to cross the bridge, "What is your quest?"
As parents of children with special needs, we may find
ourselves engaged in a daily battle to determine our QUEST, or our PURPOSE in life.I know that I do!
I look at ALL there is to do around me…all of the “causes”
for which I need to fight; the IEP meetings to attend, the support groups to
connect with, the doctors appointments to schedule AND keep, the family and friends who need me and I them!
For many people, school choice is a wonderful thing. It's a good way to drive schools to be "better", to be more competitive, to reach for higher heights.
But for this mommy of a daughter with special needs, and an Individual Education Plan (IEP); school choice sounds like a fancy way of saying, "We can take your kid, and the money that comes with her, but provide her with little that she actually needs."
In the state of Wisconsin, a battle has been going on FOR YEARS over the continued attempts to create a Special Needs Voucher bill (possibly with wording has changed and the "name" of it from time to time, but still contains many of the same ideas.) I kid you not, this thing NEVER DIES...I've written letters to leaders, editorials in papers, and sat in on committee hearings...the bill will whither and fade away because of the persistence and passion of hundreds of parents and advocates, but it JUST.KEEPS.COMING.BACK...
Can you say Freddie Krueger?
Don't believe me? You can follow some of it's history at the official blog page for the grassroots group Stop Special Needs Voucher! It's a great account of what's been going on over the past three years, at least.
So, why, you may be asking, does this idea scare the living daylights out of me? (It has nothing to do with me imagining it as Freddie Krueger). It frightens me because I know that the IEP we have for my daughter, the IEPs that many of my friends have for their kids, the IEPs that are protecting them, advocating for them, ensuring them the best education possible, are completely at risk once they leave the public schools. Check out this informative site: Understanding Special Education It says here that the district will still evaluate the child and make recommendations, but that doesn't mean the private school has to follow any of it.
So, with a Special Needs Voucher; as they continue to propose here in Wisconsin, the money for a child with special needs would get sucked out of the public school and given to the private school, but that private school wouldn't even have to get the student the therapies or accommodations she or he needs.
Do you know what that would look like in OUR life? My daughter receives vision services, orientation and mobility services, additional help for math, reading, music, science, social studies...she has a speech therapist, and an occupational therapist on consult...are you going to tell me that a private school is going to hire all of those people for little old her if they aren't REQUIRED to?
"Tammie, have a little faith..."
Oh, I have faith...don't worry, I have faith. I also am realistic and wise enough to know how the world works, how our flesh works, how greed works, and how "a little shave here and a little shave there" becomes a whole shaved head eventually.
"So, Tammie, no one says YOU have to enroll your daughter in a private school..."
No, you're right, I don't have to, and I don't want to. But I also know that there are a lot of parents out there who might not realize the full implications of what rights they would be abandoning at the door if their child with special needs got in on a Special Needs Voucher program to a private school.
As I said, this sounds very attractive, but I believe it's a wolf in sheep's clothing.
My daughter would be a cute bubbly nine year old with a white cane and a dollar sign on her head. That "choice" sounds like a dangerous chance to take.
As a family of a child with WAGR Syndrome, we seriously have the COOLEST toys for playing pretend doctor at our house. Why are they so cool? Because some of the equipment is actually real!
We have two blood pressure monitors. The first is the kind you see in hospital rooms; big...really big. That one stopped working about 6 months ago and we replaced it with a much more portable smaller machine. We regularly are taking Evie's blood pressure and e-mailing the numbers to the nephrology (kidney) department at the Children's Hospital.
We have been dealing with Evie's high blood pressure since she was an infant. She had part of her kidney removed when she was about 17 months old because of Wilms Tumor, which about 50% of the kids with WAGR will develop. Whether it was the chemotherapy, the partial nephrectomy, or "just one of those things", we really don't know; but Evie's blood pressure sky-rocketed.
At that point, we had never met with nephrology; only oncology (cancer department) and urology. However,one of the doctors who was supposed to sedate Evie for an MRI saw that her blood pressure was averaging around 140/120 and he refused to sedate her until someone from nephrology came to consult with us. Especially considering that infants blood pressure should be lower than adults, and this isn't the blood pressure you want to see in an adult, we were pretty fortunate that the sedation doctor put his foot down.
Since then, I have had to kind of "put my cranky pants on" a couple of times with nephrology. They have never really treated Evie's high blood pressure with the aggressiveness that I'd like to see. People with WAGR have an increased risk for kidney failure down the road. The higher a person's blood pressure, the greater strain is put on the kidneys. It only seems logical to me that we would want to keep Evie's blood pressure at a controlled, and healthy range. We've been through lots of medications, and seen or experienced a lot of side effects. The four types of medications used to lower high blood pressure are:
Calcium blockers
Beta blockers
ACE inhibitors
ARBs
The most visible side effect Evie had was to a calcium-blocker she was on as an infant. The two side effects she experienced were her gum tissue growing over her teeth (you could barely see them coming in when she cut her baby teeth), and dry mouth. If you've ever experienced dry mouth, you know it is intensely uncomfortable. Dry mouth also can cause or make one susceptible to sores and ulcers in the mouth. Evie's "skin" in her mouth would be so dry that she'd often have bleeding gums. After several weeks of this (we didn't notice it right away because she was such a young baby) I asked to have Evie taken off of the calcium blocker.
The "non" visible side effects include a raised creatinine level, too much protein in the blood, too much potassium in the blood (hyperkalemia), and too much calcium (hypercaldemia) in the blood. At one point in time or another, we have seen these effects in Evie and have had to switch medications in order to eliminate the problem. Evie's also been on beta-blockers, ACE inhibitors and ARBs. Actually, I think with the addition of her most recent medication, she's on all three of those right now. (Grrrr...wish we didn't have to keep adding to her medication regimen.)
Blood pressure is such a frustration for me. A year ago, the nephrologist had Evie wear a 24 hour monitoring cuff to see if we could identify any root-cause of the high blood pressure, but the results didn't yield any great "aha" information.
We've added medication, taken away medications and switched medications; we've tried music therapy (which seemed to help for a while)...but we just can't get her blood pressure as low as we would hope to keep it in order to place as little strain on her kidneys as we can.
Low sodium diet? Oh, don't worry...we are on that day and night. We took her off school lunches and pack her lunch every day. I don't bother buying many things that say, "just add water" because "just add water" usually means "here's your entire day's worth of sodium."
A recommended sodium amount for an adult who needs to reduce his or her intake is 2 grams...an example of what that equates to would be two bowls of chicken noodle soup. Here are some other things we've done to try to limit Evie's sodium intake:
I have begun to shop for foods that have fewer than 100 mg. of sodium per serving.
I never add salt to anything, even if a recipe calls for it.
I buy many things organic, like peanut butter, because I've found that much of the organic foods have lower sodium.
I don't let labels fool me! A label may say, "Low Sodium" or "Half the Sodium," but I still want to check the amount of sodium because I don't know to what they are "comparing" their measurement.
Just last night I was looking at Evie's blood pressure readings. We had added a medication back in December because her blood pressure had crept back up, and the frustrating thing is that we are seeing the systolic number (the number on top) has only changed a little.
Evie's blood pressure is a daily reminder to me that I am not in control, and that medicine can only do so much. I try to remember to give it to the Lord who already knows the plans for Evie's life.
In the meantime, we'll continue to monitor, add whatever we need to in attempts to keep her blood pressure lower, and, of course, enjoy having some of the coolest "doctor" equipment right here in the comfort of our own home.
I have so many passions, and so little time.I’ve always been this way.I recall my mom joking that when I was
younger I wanted to be a Geologist-Astronomer-Choreographer.That, for the most part, sums up my
ambitiousness still today!So, if money
were no object; if I didn’t have to work, what would I do with my time?That’s easy.
