Living with Cerebral Palsy in Chicago

 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!

null

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.

Yes, Botox. It’s not just for rich, older ladies anymore!  It has been used for a few decades on the muscles of patients who’s muscles are stiffened to help them relax. In Jacob’s case, he has high tone. Which means the nerve impulse fires rapidly between the muscles and the brain- and they are always ”on”.  Try to squeeze your fist tightly. It feels tight and not bendable, right?  This is what Jacob feels normally throughout the day.

He has had difficulty walking for a few reasons, one of them being that his adductors, (or inner thigh muscles), were really tight and this caused him to scissor step. When he walks, sometimes his ankles cross over the others. How far could you get walking this way? We have tried a few pieces of equipment that physically stop him from crossing over, but botox allows him to have more control over it. He also has issues with his hamstrings being tight, which causes him to sit on the floor with a rounded back.  Stretching is a daily activity to help him stay as limber as possibe.

On August 22, 2008, we went for our first botox injection. Botulinum toxin (Botox) , is a medicine that has been used for decades in the medical field to decrease tone and unwanted spasms in a specified group of muscles. Botox, is essentially the same toxin that is linked to botulism- which is a type of food poisoning. However, in small doses can be extremely benefitial to patients. The results typically can last from 3-6 months.

Researching on the internet made me so nervous. People in Web groups that I belong to have posted many negative effects from Botox. (There are some scary things on the internet if you go looking for them).  The worst effect being death.  We debated for months and even put it on our back burner for a bit while we learned more.  I spoke with our therapists and eventually felt more comfortable doing it.  Our doctor explained that they identify which muscles need the relaxation and they find the weight of the person. The problems occur when doctors exceed the dosage recommended for the patients weight.  They then distribute the correct amount of Botox into the of muscle.  For example, Jacob had 4 spots; left adductor, left hamstring, right adductor, and right hamstring.  They found his weight and figured the correct dosage for him.  They also believe that he could benefit from his calf muscles as well, but our doctor worried that it would not be enough botox to spread to 6 injection sites.  She also determined that his right side is tighter (all over his body) and gave a little more botox to his right side than his left.

Positive Effects - Wider range of motion, ability to stretch further, stronger gait when standing or walking, ability to crawl, walk, etc.  In the hands - turning doorknobs, holding pencils, etc.

Negative Effects - Some sites that I have been on have noted no negative side effects whatsoever. However, I have read on message boards that some have expeirenced difficulty swallowing, difficulty breathing, and even death.

Often, in conjunction with Botox, serial casting is used.  This is a process where a patient’s limb is immobilized into a cast.  The main objective is to broaden the range of motion in the specific area after the botox lessens the tightness.  The feet and legs are most often done. The patient is seen weekly, while re-assessing how much more range to set- and then recast.  This typically last from 4-6 weeks and results have been great.  Can you imagine how far you would be able to strecht your hamstrings after a month of this?

We are extremely pleased with the results on Jacob. It seriously has been a miracle what it has done for him and I see such a bright future for him!  If this is something that you are interested in… please talk to your therapists, doctors, or even specialists to see if this would be a route for you.

I cannot believe the results that we have seen in such a short time!  The first night after the shots, he was able to sit on the potty chair with his legs bent at a 90 degree angle..and not jetting out infront of him.  When we do stretches, I can definately see how much this is working!

 What has impacted Jacob the most is in his walking.  His adductors have loosened up so much that he walks perfectly straight without scissor stepping. I can see when he is getting fatigued because his steps revert back to the sloppy stepping from before.  We are so much more independant now and we just keep practicing everyday to go further and faster!

Welcome To Holland
by Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved. Article printed with permission of the author.

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

*     *     *

    I just love this poem and I think it so accurately portrays the feelings of my family and many others who have disabled children.

  I was just discussing with a friend of mine, the thought of having another child.  We (actually, I) have been delaying having another one until Jacob learns to walk on his own, or can manipulate his walker.  But, I am not getting any younger. 

 I struggle with three ideas-

1. Will I be doing an injustice to Jacob by having another child? Will I be able to spend enough time on BOTH children?

2. I struggle physically with Jacob- he is aleady 35 pounds and is 2 and 1/2.   Will I be able to carry the two children around?

3. How would we manage if our next child is also disabled?