Living with Cerebral Palsy in Chicago

      A friend of mine forwarded this short video to me about a young man whose parents were told that he would never walk.  The child found an interest in the sport golf and as a young man completed a goal of his and touched many lives.  Watch this short video - it is truly inspirational!

                http://vodpod.com/watch/1165857-walk-on-espn-video

     In the recent months, we have had many changes here, resulting in my small hiatus from writing on my blog.  Jacob has transitioned from our cozy home in the Early Intervention Program to The Chicago Public School system.  We have also gotten a new therapy team at the Rehabilitation Institute of Chicago.   But I have truly began to realize that I have to provide my child with as many experiences as I can.  I have to give him the chance to try new things, whether he succeeds or fails.

   I think we can all agree that sometimes it is easier to just do things for our children.  Sometimes we just don’t have the extra 20 minutes to climb up the stairs when I can get us up in 1 minute.  Sometimes, we just dont have the extra time to clean up after lunch, so it is easier to feed him the messy foods. But at some point, we have to make them accountable for themselves.  I am so excited for the lazy days of summer! There is no rush to get us up the stairs- it can take us all afternoon.

      We have permanently removed the word “Can’t” from our vocabulary.  I don’t care if he is not walking independently… yet.  I don’t care that he cannot run… yet.  I don’t care that he is not saying many complete sentences…yet.  Because we will practice everyday.  And we will not give up… until one day he  is able to, walk and run.  And I don’t care if he doesn’t look like everyone else doing it either.  The young man in the golf video had his own style and used assistance to golf… but he did it!

     Think about your typical day with your children.  There are so many opportunities to hold our children accountable for their own needs.  Whether it is brushing their own teeth sufficiently, or walking themselves into the store or park.  Help your child make those steps into greater independence.  Who knows what they will be able to accomplish????

This is a story I appreciate. I hope you will, too.

A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil without saying a word.

After about twenty minutes, she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl.

Then she ladled the coffee out and placed it in a bowl. Turning to her daughter, she said, “Tell me what you see.”

“Carrots, eggs, and coffee,” her daughter replied.

Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg.

Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted inhaled its rich aroma and tasted its full flavor. The daughter then asked, “What does it mean, Mother?”

Her mother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently.

The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak.

The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened.

The ground coffee beans were unique, however. While in the boiling water, they had changed the water.

“Which are you?” she asked her daughter. “When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg, or a coffee bean?

The happiest of people don’t necessarily have the best of everything; they just make the most of everything that comes along their way.

May we all be coffee

This Saturday, March 28, billions of people around the world will be turning off their lights for 60 minutes to draw attention to our climate change and mark the need for global action.  Beginning in Australia in 2007, this sponsored event by WWF, World Wildlife Fund, is expanding to many more countries. This year, it should be even bigger, with 2,400 cities and 82 countries prepared to go dark.  WWF is hoping that 1 billion people participate this year.  Wherever you are in the world, at 8:30 p.m., turn off your lights and conserve energy for 1 hour.

  Who is participating??

Some of the world’s most famous landmarks, including the Eiffel Tower, Christ the Redeemer statue in Rio de Janeiro, Sydney Opera House, and Table Mountain in Cape Town, will unite with icons such as the Merlion in Singapore, Niagara Falls, Hong Kong’s Symphony of Lights and the Shanghai Hong Kong New World Tower – all going dark for one hour, at 8.30pm on 28 March. The London Eye, too, will be dimmed for the hour.

    What will you do for an hour in the dark??????

•  Light Candles and eat by candle light.
•  Pop some popcorn and pretend you are in a movie theater.
•  Use this time to talk with your children about the Earth, different types of pollution, and climate change.  Discuss the significance of what 1 billion people can do!
• Go for a walk outside and see what your town looks like in the dark. Take pictures! Didn’t see many people participating in YOUR town this year????  Then you can educate them for next year.  To quote Ghandi- “Be the change you want to see in the world.”
• Have an Earth Hour party with friends and neighbors and enjoy their company! Who knows? Maybe you will have so much fun, that as families, you will do this more than once a year?  

I will be posting pictures from Chicago Earth Hour 2009.

If you would like more information about Earth Hour, visit the World WildlifeFund website.

http://earthhour.wwf.org.uk/

On December 3rd, our family went to a Christmas Party at The Elmhurst Art Museum. This Special Kids day was a volunteered event for kids and families with special needs.  There were a lot of families coming and going- it got pretty loud in there with all the children laughing and playing. 

    When we arrived, we walked around a bit to see what activities there were to do.  The line for Santa seemed to be the longest- so we got in at the end.  It was so heartwarming to see so many children and their families enjoying a party that was just for them!  I almost thought about scrapping the idea of going since the weather was supposed to be so bad- I am so glad that we went. 

     In line for Santa, volunteers of the event came around to talk to families.  Cookies were offered and Ronald McDonald was walking around getting hugs.  We noticed tht there was also a face painting and balloon animal station as well.

 Since setting up our house decorations, I have been working with Jacob on “Who is Santa.” He now is aware of who his is… but does not know what he does. Maybe next year I will be able to use the threat of calling Santa on the phone to tell him that Jacob is misbehaving… 

When it was our turn to see Santa, Jacob walked up to him and wouldn’t stop looking at him.  Trying to out him, Jacob tried to pull his beard off.   Even though this year, he couldn’t verbally tell Santa what he wanted- I think Santa knows which toys to bring him.

    When we finished with Santa, Jacob received a goody bag from Santa’s Elf.  It was filled with great goodies.  Before leaving, we waited in line for a balloon animal. He enjoyed his balloon duck, more than I thought he would. There was also an opportunity to make Christmas crafts- but it was almost dinner time. I think he will be up for that activity next year.

I’d like to thank Special Kids Day and their sponsers for the great evening.  Here is a link to their website. It’s great to see that more events are being planned for 2009.

http://www.specialkidsday.org/index.htm

    Jacob is on a medicine called Keppra, used to stop his myoclonic epilepsy.  Most medicines for seizures are a trial and error in kinds and amount.  We were lucky that this first one that we tried worked very well for him. However, the side effects make it questionable if the good outweighs the bad.  It makes some children irritable.  I kept telling myself that he was going through the “terrible twos”. But he was just so sensitive with what would set him off.  Asking him to do many tasks would send us into a crying fit. This was not my good little boy from before.  My neurologist suggested that vitamin B6 helps equalize the effects of the Keppra.  In online forums, this is often refferred to as Kapprage.

  He has been taking the B6 for about a month now…and I am so amazed with the results.  It’s amazing that we get through all of his therapy sessions without meltdowns.  Hopefully this helps someone else in the community. It is amazing what some of the side effects of medication can be!

 How Mothers of Handicapped Children are Chosen

  
Erma Bombeck, 1980
 
This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.
“Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter?”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”
God smiles, “No matter. I can fix that. This one is perfect.
She has just enough selfishness.”
The angel gasps, “Selfishness?
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word. She will never consider a ’step’ ordinary. When her child says ‘Mama’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life.”

“And what about her patron saint?” asks the angel.
God smiles. “A mirror will suffice.”

Autumn is here! Some our favorite fall activities include apple and pumpkin picking. Spending a brisk fall day outdoors can be great fun for the whole family.  These pumpkin farms have a wide variety of activities for everyone in  the family.  Some have petting zoos, corn mazes, pony rides, little stores, restaurants, warm cider, and goodies to bring home.  Check their websites to see if there are any coupons before you go!

                                                                Didier Farms
16678 W. Aptakisic Rd.
Prairie View, IL 60069
Phone: 847-634-3291 

http://www.didierfarms.com/

                                                             Ziegler’s Orchard
32363 N. Bacon Rd.
Grayslake, IL 60030
(Lake County)
847-546-1228

                                                            Johansen Farms

710 W. Boughton Road
Bolingbrook, IL 60440
630-759-8711

http://www.johansenfarms.com/

                                        Goebbert’s Farm and Garden Center

40 W Higgins

Road South Barrington, Illinois 60010  847 428 6727

http://www.pumpkinfarms.com/splash.html

      The trees are changing to such beautiful yellow, orange, and red shades now… if you blink… you may miss them! There is an endless list of places in Chicagoland, suburbs AND city that are fun, earthy, and educational!  Here’s a list of our favorites.

                                                   Morton Arboretum

They have so many activities for all ages. Check out their website for a full list of activities and times. They explore bat, gourds, gnomes and more.  The Morton Arboretum has 10 different gardens. Visit The Fregrance Garden, Container Garden, and Maze Garden to name a few.  Check out their website for hours and admission.

http://www.mortonarb.org/

                                                                            The Grove

	1421 Milwaukee Ave Glenview, IL 60025 (847) 299-6096		Hours:		Mon.-Fri. 8 am-4:30 pm Sat.-Sun.: 9 am-5 pm (Closed New Year’s Day, July 4, Christmas)
Phone:

This is a historic place with buildings that date back to 1856.  There are 9 buildings at The Grove to walk through.  The Kennicott House, The Native American Longhouse, and The Interpretive Center are just a few.  The Interpretive Center houses fish, snakes, turtles, and a sea turtle that have visited often since I was a child! Wild birds roam the trails outside all year.  On Weekends in October, November and December, there are craft shows in all of the buildings. You can stroll through the nature trails, buy some snacks and coffee, check out the crafts, and even run into Santa! 

    Just a word to warn you…. some of these buildings are not handicapped accessible. You may want to call before you go. The trails and interpretive center may be, however, the smaller houses are not.  I carried my little man through the tight quarters and just wound up with a backache.  But there are so many activities this fall that whole families can do.  Bundle Up and Have fun!

 

 

 

      This weekend we went to Didier Farm to visit their pumpkin patch.  We all had a great time.  It was great to give him that experience, since we never made it last year due to his surgery.  I was surprised at how observant he can be.  There are many activities and plenty too see. There was a pig pen, a petting zoo, and carnival rides. He is too little for some of these activities, but they also had a mini corn maze and spook house.  We didn’t even have time to do everything that was there. 

     We did make it to the hayride.  Since he has never been on a tractor or hay ride… this was very exciting.  He just kept giggling while we bounced up and down.  There was a boy sitting next to him that offered some straw from the hay, but Jacob kept putting it in his mouth… The farm has little radio flyer wagons to help everyone bring the pumpkins back to their cars.  Some parents chose to pull their children in them.  When we were in line for the hay ride.. Jacob kept yelling “Truck.. Truck!”, referring to a wagon that was left.  I swear, he forgets that he can’t walk. When he really wants something, he jumps right out of my arms to run to it!

         Jacob has never been on a horse before.  Since I am very interested in hippotherapy for next summer, I wanted to see how he would respond to being on a real pony.  He giggled at first, but after the pony started to go… he wanted to get off.  I literally had to hold Jacob up, since he was not holding onto the saddle.  Wow they walked fast… I got a mini workout! 

       Before we left, we took some time to pick our pumpkins. Mert picked the big one and Jacob and I picked two smaller ones.  We sat him on a huge pumpkin for some pictures and he kept calling it a ball. It was a great day to get out…. but it’s just not the same going pumpkin picking in 80 degree weather!

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Today we had a meeting between Jacob’s 2 physical therapists and a wheelchair vendor.  It was quite eye opening, as I expected this to be a quick and easy choice.  However… there are so many factors to think about.  The choice is either between a “stroller wheelchair”  or a “typical pediatric wheelchair”.

We wil need to purchase one of them, since Jacob is outgrowing his umbrella type stroller and his feet are touching the ground already.  Jacob is aging out of early intervention  in 4 1/2 months and will be starting preschool in the Chicago Public Schools. ( We are starting the initial evaluation process next week. ) More than likely, my little baby boy will be bussed to school. I’m not sure who isn’t ready for this yet, me or him?? But whichever type of device we pick will have to be bus compatable- (both are).  To be bus compatable, they must have foot restraints and locks, a headrest to prevent whip lash, a 5 point harness, and be crash tested.

     Jacob is right between the two chairs, even his therapists were at a loss with which one to pick.  The HUGE problem is that insurance companies will only pay for a wheelchair every five years.  So whichever chair we pick must grow with us until he is 8 years old!  Can you imagine the changes that he will go through by then?  Physically and mobility-wise?

Jacob and "The Green Machine"

    Right now, Jacob has just been walking with the use of a posterior walker. He is doing pretty well after the botox shots.  Now his feet don’t cross over- he used half of his energy to untangle his feet! It is a hard decision to make because who knows how ambulatory Jacob will be in 6 months… let alone 5 more years? 

    There have been many responses from parents in the CP community. Some tell me that they never use their wheelchair, except for school. They are bulky, heavy. I already know it will not fit into my little Saturn. However, some parents point out that their child’s self esteem is better in a wheelchair. The children often get hurt feelings when “completely random people, who should mind their own business” come up to them and say “Why do you make your mommy push you around..?  Get out of that stroller.”  I’m not sure who in their right mind would say that to a child, but more than one parent told me this.  We were at the circus this weekend and a little boy and his dad were standing by us.  Jacob fell asleep in his stroller and the boy pointed Jacob out and the dad said “Yeah, look, that baby is sleeping.”  They were roughly the same age??? And Jacob looked to even be taller than him. 

*Side note*

    My all time favorite comment by a stranger would have to be by the woman who was selling us his new shoes. She could obviously see that he had AFO’s on and asked why he was wearing them.  Her response was “He was perfect when God had him.”  My best friend, who was with me at the time, looked a little scared that I might sock her in the jaw! Candy gave me a look, as if to say…. “She means well”.  At least we can giggle about it now.

Hello…. I haven’t written in a while- a trip to the neurologist has sent me over the edge, mentally. To give a brief history… a year ago…we saw almost every doctor that there was to see… a physiatrist told us that he had CP. Then our neurologist had Jacob take so many blood tests and they came back normal.
Last week, our visit completely devastated me. The neuro kept asking questions about his birth and pregnancy, etc. He tells me NOW, that with his weight and apgar scores being so good, and since there really was no “qualifying event” ….  he could not have CP. He then tells me that he is setting up more  tests for Jacob to see if it is genetic. I thought we took all of the blood tests that there are to take?  I’m so confused by this…. I feel lost.. devastated… and with the amount of time that doctors spend on us patients… I have so many questions that need answers. Why did we not explore this avenue when he first saw him? Did he not pay attention to his weight and apgar scores? Is there something else that I should know or look for? I’d be happy to do research… if I knew what I was dealing with.
I spent a few evenings looking at possibilities and that just depressed me more.  After dropping this bomb on us, we haven’t heard from the doctor in 5 days to set up these blood tests. Sigh…….
If it is not CP and it happens to be genetic… then we have to see a geneticist to evaluate what our chances are for the next baby.  I guess there is no reason to get so upset just yet…… I’ll keep posted.