Monday, June 29, 2009
Bill of Rights for Parents of Kids With Special Needs
This is great! I stole this off Bethany's Blog. I am in good company as I believe there has been a lot of blog-post-thievery surrounding this post. I found myself shouting out a few AMENS and a few THAT'S RIGHT SISTA as I read through this post and I knew that it must carry on. Enjoy!
We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the butt.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
The Mommy Special
Well... yesterday was haircut day. AKA... the day that I pull out the clippers and just do the best that I can with time that I get. There is not telling on any given day how long one of my boys will sit still (with some restraint of course). Sometimes it is painfully obvious that they did not get their current haircut at the local barber shop or even at a super cuts... no... there are times that their new look screams "Mommy Special" and everyone just gives you that nod... you know... that nod that says "yea... I tried to cut my kid's hair too... thank goodness it is not picture day..."
Well thankfully yesterday was pretty uneventful as far as a haircut day goes. I was really worried about cutting Sean's curly blonde locks but he did pretty good. All in all I think their hair looks pretty good... Mommy Special or not they are acceptable for public appearances. Below are a few before and after pics...
FYI... Andrew got his hair cut "professionally" about a week ago and was spared the Mommy Special haircut this time around.
BEFORE
Wednesday, June 17, 2009
Tuesday, June 16, 2009
Thank God for insurance!
Last night I drove through the pharmacy to pick up Sam's latest prescription... TOBI. The pharmacist chatted with me for awhile and then he said "Thank goodness you have good insurance coverage on this...... your insurance saved you $4335.39!" OMG!!! At $4000.00 + per month this stuff had better work. Besides our regular co-pay we had to get a special nebulizer attachment (not covered by insurance) but all considering insurance saved us a bundle!!! seriously!
TOBI... short for Tobramycin (TOE-bra-MYE-sin). TOBI is an inhaled antibiotic used to treat certain infections caused by Pseudomonas bacteria. Typically this medication is used by Cystic Fibrosis patients. Sam does not have CF, however like many CF patients he seems to be plagued by Pseudomonas infections. TOBI is administered via a special nebulizer, 2 times a day for 28 days on... then 28 days off.... then 28 days on (you get the picture). Each treatment takes about 15 minutes and Sam, no stranger to nebulizer treatments, seems to tolerate them pretty good so far.
After one oral (g-tube actually) antibiotic after another with so-so luck at keeping infections at bay, his pulmonologist thought TOBI might do the trick. I have high hopes that since this medication is inhaled, rather than ingested, it might not have the same negative effect that other antibiotics have on his bottom. Sam still has horrible diaper rashes due to Hirschsprung's disease and having basically no large intestine so maybe since TOBI does not go through his system the same way maybe his sore bum will be spared.
Sunday, June 14, 2009
ISCU Reunion
Today we went to the annual ISCU Reunion (Infant Special Care Unit). It is hard to believe that Sam was once so tiny and fragile. He was born weighing 2 lb 5 oz and 14 inches long.... below is a pic of Sam being held by his nurse Diane when he was about 1 month old. You can see that he had not yet graduated to an open crib and for a size reference... the probe that is wrapped around his foot (pulse-ox monitor) now fits on his big toe. You've come a long way baby!
Here is Sam, once again being lovingly held by his nurse Diane. She cared for Sam for his first 3 months while he learned to grow, eat and breath in the ISCU. Diane is amazing and we owe her so much for all the love and care she gave to our family. 6 years later Sam is now 50 pounds and 45 inches tall.
Another familiar face. Dr. Juda Jona operated on Sam when he was just 11 days old and weighed less than 2 pounds. Dr. Jona's skilled hands have operated on Sam many times. Dr. Jona told us today that he is moving to Michigan... we are sad to see him go but we are ever thankful for all that he has done for Sam.
Saturday, June 13, 2009
a mini-makeover for the "old wall"
So now that the bathroom is done I felt a few other places (actually quite a few other places) around the house could use some sprucing up. This wall separates the great room from the kitchen and does not go all the way up to the ceiling. I have always wanted to paint it a different color than the rest of the room. Originally I wanted it red but the painter we hired when we first moved in (super high ceilings that we couldn't reach so we hired a painter to put a fresh coat on everything) strongly suggested against it. So after all this time I settled on latte... yes leftover paint from my mini bathroom remodel (see a few posts down). I also just added some accents from uppercase living (of course) ... FAMILY MEMORIES and some swirlies in a nice chocolate brown. I think it looks nice on what I call my "old wall". It it far from being finished but on this wall hangs old family photos and heirlooms. The spoons were passed down to me from my Great-Great Grandmother in Sweden. I have several other old photos waiting for a proper framing job that will someday hang on this wall as well.
Friday, June 12, 2009
Torch Run for Special Olympics
Last weekend our family participated in the Wilmette leg of the Illinois Law Enforcement Torch Run. It has become a tradition and the last several years we have involved the boys in the run too. Sam even ran the last few yards this year! I was thankful the rain held out but I think the boys were more excited about the police escort through town.
Law Enforcement Torch Run
WHAT IS THE LAW ENFORCEMENT TORCH RUN?
The Law Enforcement Torch Run is the single largest year-round fundraising event benefiting Special Olympics Illinois. The annual intrastate relay and its various fundraising projects have two goals: to raise money and to gain awareness for the athletes who participate in Special Olympics Illinois. The Law Enforcement Torch Run has raised more than $16.825 million over 23 years while increasing awareness of Special Olympics Illinois athletes and their accomplishments.
Approximately 3,000 officers representing every branch of law enforcement across the state from local police officers to FBI agents will carry the Flame of Hope nearly 1,500 miles, running through thousands of Illinois communities via 23 different legs (routes) to its final destination – the Opening Ceremonies of the Special Olympics Illinois Summer Games in June in Normal.
HISTORY OF ILLINOIS LAW ENFORCEMENT TORCH RUN
The Law Enforcement Torch Run began in Illinois in 1986. That first year, fewer than 100 runners carried the torch along five legs: North (starting in South Beloit), South (starting in Cairo), West (starting in Quincy), East (starting in Danville) and the city of Chicago.
Illinois’ first Torch Run raised just $14,039.93, but the seed was planted for future growth. The Torch Run raised $500,000 in Illinois in 1997. Illinois easily surpassed the $1 million mark in 2002 and first raised more than $2 million in 2006, making it the third highest grossing Torch Run program in the world.
Tuesday, June 9, 2009
Put me in coach... I'm ready to play
Tonight the Challengers had a night game under the lights... with an announcer an everything. Please excuse the quality of the photos but most of them were taken from the edge of the parking lot since Sean fell asleep in the car... so all considering not too bad.
At first glance you might look at this touching picture of a father and his son contemplating the purpose of second base... to stand on it or not. However upon closer look... SAM IS STANDING!!! Yes, he is just standing. Standing - without moving, legs still- standing like a big boy on second base. This picture might not seem that important but to me it tells me that he is getting stronger, his balance is getting better and that he is now very capable of standing still without dropping to his knees.
Slammin' Sammy Collins is getting ready for his second at bat. It is hard to see but he has a big grin on his face. The other team is not even all on the field yet but Sam is ready to go. He was so impatient that he took the ball off the tee and threw it onto the field and took off toward 1st base. One of the coaches retrieved the ball (to Sam's great delight) and he is now waiting for everyone to get ready and for someone to bring him a bat.
Another father and son moment on second base.
runnin' bases
I love Sam's expression in the picture... it about says it all. He might not have the best form but he knows how to get the job done.
Here is Sam sitting in right field cheering on the other team. Every time they hit the ball Sam had no interest in chasing it down... he just wanted to show some good sportsmanship. Sam would clap and yell "yeeeeaaaaa" after every hit ball.
***health update.... today was Sam's last day of this last round of antibiotics and he hasn't needed any oxygen in nearly a week. He has been on antibiotics, sometimes 2 at once, since March. Obviously, he is feeling better and I think the sinus infection and bronchitis are under control at this time. He has been home from school for 2 weeks now and sadly missed his last day, aside from a brief visit today to say a quick good-bye to his friends and teacher. Summer school starts next week and I think he will be excited to go back. It was good to see him running all over the place tonight.
Monday, June 8, 2009
If Sean ran the world
Dear Mom and Dad
Below are my list of demands. I am glad that we were able to come to an agreement. Please sign and date below.
Your loving son, Sean.
1. I will rise but I will not shine. (at least not right away)
2. Once I wake up I will want to be held for an undetermined amount of time. I will let you know when it is ok to put me down. You will drop all that you are doing and just hold me. Putting me down before I say when will result in tears.
3. I have decided that I don't want to eat breakfast in my high chair anymore. I will be allowed to wander the entire house and will deposit breakfast food items in undisclosed locations that I may consume at a later time. If it can crumble... I will crumble it. It I can smear it... I will. Any attempts to thwart my efforts will only cause me to work faster. Just let me get my business done and no body will get hurt.
a. If forced to eat breakfast in my high chair I WILL throw all items placed in front of me as far as I can. Rest assured I will located all said items and try to feed them to the cat or hide them.
4. I want to eat whatever my brother is eating. I will get my way. However, I reserve the right to change my mind at a moments notice and will throw all unwanted items as far as I can. You must then read my mind and promptly place the food item of my desire in front of me. Failure to do so will result in loud shrieks until you get it right.
5. I will let the cat escape every morning while you take my brothers out to the bus. The cat and I have come to a mutual agreement. We will continue with our plans of total domination until you send me to pre-school or the cat dies.
6. I might take a nap and I might not. I will not give you any hints of my master plan... you can't make me.
a. If I do decide to nap I will lie where I fall. Any attempts to move me to a bed/crib will result in tears and then I promise you I will stay awake until well past your bed time.
b. In the event of a nap see #1 and #2
7. I will eat a nutritious lunch for you. However I reserve the right to throw all my food on the floor and request for more. You will comply.
a. a short time later I will empty the pantry in attempts to locate something to nibble on. You will leave the food where I put it. Attempts to put it away will result in tears and only make me work faster.
8. I like yogurt, applesauce and ketchup. However, after eating my fill I will rub the rest in my hair, on my clothes an all over my tray. I may even use my spoon to fling some by anyone brave enough to dine near me.
a. You will then be required to bath me and change my clothes.
9. I like a clean diaper, just like the next guy, but I like being naked even better. So change my diaper quickly (I haven't got all day you know) and put pants on my right away. Failure to do so will result in me taking off my diaper an putting it in an undisclosed location.
a. I may at this time pee on the floor. You will not get angry at this. It is a natural bodily function... everybody does it.
10. Don't put pants on me that have snappy crotches anymore. Who thought it was a good idea to put 8 snaps on these things??? I only have the patience for for 6. And did you know that I can undo all the snaps and pull my diaper off??? If you are really nice to me I will tell you where I hid it.
11. If I didn't have a nap in the morning I just might take one in the afternoon. Don't try to figure out when or where... just let me be and stop trying to act like you know what's best for me. I am a big boy and I can do what I want.
12. I will, no doubt, have emptied the toy box several times by now for no apparent reason. No, I was not looking for anything in particular... I just think it is funny to watch you try to pick things up faster than I can toss them about.
13. I will touch all things perviously told to me to be off limits while you go to the bathroom. Upon your return I will tell you that my brother did it and claim no responsibility.
a. I will move furniture in order to touch said things and I will not take personal safety in to consideration.
b. NOTHING is beyond my reach.
14. My brothers have the coolest toys. So just buy 2 or 3 of everything and nobody will get hurt.
a. Failure to comply with this simple request will result in a quick snatch and grab and when I am a safe distance away I will break it (whatever it is) so no one else can play with it.
15. I am cute and I know it. Just keeping it real.
16. I will eat anything you put in front of me for dinner, within reason. However I will consume all that I am willing to eat before you even sit down to the table at which time I will throw my plate onto the floor, remove the tray and drop it down and make an honorable escape attempt.
a. I may use fake tears. I know it is not fair but we both know it works.
b. Pour yourself another glass of wine.
17. I am the baby and demand to be treated as such.
a. I can take toys away from anyone but no one can take them away from me.
b. I am above the law and will employ every trick in the book to make you smile when you try to discipline me.
c. FYI ... I like the naughty spot. (seriously... this sort of punishment is for amateurs)
18. I will find a writing utensil and I will write on something important. If there is no paper or permission slip or bill, or other important document available I will write on myself. It is called self expression MOM.
19. I have lots of energy and I will fight sleep at all cost.
a. I like to cuddle on my own terms. And although we both know that sitting quietly is the best way to get me ready to go down for the night, know that I will test your very limits as a parent. I do this because I love you. What doesn't kill you makes you stronger.
b. Forget the fact that I am too old... I'm not gonna lie to you... I like the "mommy milk" so why do you keep holding out on me? Seriously, I would go right to sleep if you would just whip out the "good stuff". You give me what I want and I will give you what you want... cross me and there will be hell to pay.
20. I love you with all my being. However I will only submit to a limited amount of kisses and hugs each day. I will slap you in the face, I will blow my nose on your shirt and I bite... but it is all because I love you.
(parents of Sean E. Collins)
I _____________________________, herby agree to these terms and accept you and promise to love you unconditionally for the rest of my life.
Tuesday, June 2, 2009
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