Overwhelmed by Election 2008? How to help your kids get involved! by Jen Dillman

By Brenda Barton-LeMay

My daughter Sierra and I started a Mother-Daughter book club during the summer before she and her friends started 4^th grade.  This was the first time I felt the girls were mature enough to participate in a meaningful way, and I think this proved true for the girl members of our book club.

Here is the name of a great book to get you started: The Mother-Daughter Book Club:  How Ten Busy Mothers and Daughters Came Together to Talk, Laugh and Learn Through their Love of Reading by Shireen Dodson.  I've also attached copies of some of the materials I used in connection with our first organizational meeting, along with a copy of our bylaws, the books we've read and a list of books previewed that may be helpful.

Although the girls have always been responsible for picking the books, planning and leading the meetings, the moms initially played a more involved role in that process (particularly in facilitating the discussions).  Over time, the moms have backed off and allowed the girls more independence in handling these tasks.  Now, the moms play a much smaller role, even in the facilitating of the discussions, because the girls (now 7^th graders) have matured so much intellectually and emotionally.

In the beginning, the hope of the moms was that we would instill a love of reading and discussing books in our daughters, and that eventually we could use the book club as a vehicle for discussing issues with the girls in a comfortable, protected setting (e.g., peer pressure, boys, changing bodies, tolerance and diversity issues, etc.).  To our delight, that is exactly what has happened! 

Mother Daughter Book Club Resources

• Sample By-laws
• Sample Booklist
• Sample cover note to moms and meeting agenda

Editor’s note:  We encourage Springfield Moms readers to launch their own book clubs and tell us how it’s going! Any mother/son or father son or daughter book clubs out there?  Let us know!

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One Mom’s Autism Journey: I Never Thought It Could Happen To Us

by Joelle Hardman

Our family was perfect, a beautiful, healthy daughter and a healthy little blue eye blond-haired boy.  My husband and I felt so blessed to have one of each. We dreamed of our children growing up to have happy lives with families of their own. 

I wish that was the end of the story, but it’s just the beginning of a nightmare.  My son went everywhere with me.  He met all of his milestones on time, played with his sister, played with toys, learned to crawl and walk.  He could even say “Momma” and “Dada” at 14 months.  This child looked into my eyes and knew I was his Mommy until one day I noticed Daniel didn’t look at me like he did before. He stopped smiling and talking. He did not respond when I called his name.  I really started to worry when our relatives began noticing that he had changed too. He wouldn‘t play with his sister anymore and actually seemed as if he didn’t even notice her any longer. While at the playground, he walked the perimeter of the fence over and over again, as if he was a rodent in a maze. 

At 18 months, we took Daniel to see the doctor and he told us he was just delayed and this is typical when a child has an older sibling to talk for them. As I was listening to the doctor tell me not to worry, I noticed my son started flapping his hands and hopping across the room. I knew something was wrong. I did not accept the doctor’s “opinion,” so we immediately started Speech therapy and Developmental and Occupational therapy.  As he slipped further and further from us into a world of his own, his therapy became useless.

It took us a year to get into a neurologist and within 15 minutes with the doctor, he informed us that our son had Autism.  I couldn’t breathe. I was numb and became very angry. I had no idea how to deal with an autistic child.  No clue at all.  My husband struggled with accepting it. We both went through our own grief, which was very hard on our marriage. We knew something had happened to our son. This wasn’t the same kid that he was when he was 12-months-old.

 I refused to believe all the “specialists” that he was born this way, because he was fine until he turned 15-months-old. That’s when we learned about Mercury being in the vaccines we gave Daniel up until that point.  It was even in the vaccines I was given while I was pregnant. 

About a year later, we learned about biomedical treatment for children with Autism. I met a woman at a support group who was taking her son to a DAN! (Defeat Autism Now!)  doctor.  They tested for heavy metals, minerals and food intolerances. We took Daniel to see this doctor and he tested intolerable to wheat, dairy, and many other things which made up his diet.  As soon as we took these foods away from him, the fog began to lift. Then we added vitamins, which gave us even better results. I knew we were on to something when he began talking again.  One day when he was 5, he even went up and introduced himself to a complete stranger and asked what their name was.  He also started pretending for the first time, started using more eye contact, and playing with neighbor kids. 

Within the last year (and after much research), we began chelation therapy for Daniel. This is a medical process which helps remove metals from the body.  This is especially important in children who do not excrete metals normally, which is the case with Daniel.  Since implementing chelation, in addition to the biomedical protocol, we are now seeing even more improvements with our son.

 All I wanted when I gave birth was to be a mommy to my son.  I now have the title of advocate, teacher, nurse and therapist with the “Mommy” title.  It is a constant fight with the mainstream doctors, insurance companies and school systems to recognize what Daniel needs.  But I don’t mind, because I will not stop my pursuit to give my child the best chance at a normal life.  He has taught me patience, perseverance and unconditional love.  And most of all, he taught me about hope and faith, which are the two things that get me through each and every day.

MORE INFO: Joelle recommends the Biomedical Intervention for Autism Springfield Support Group, which meets on the 4^th Monday of each month.  Meetings take place from 7:00 p.m. to 9:00 p.m. on 1112 Rickard Road in Springfield.  Contact Lila White at 789-4759 for more information. 

Other suggestions can be found on the Internet.  Check out this link, http://www.americanbaby.com/ab/category.jhtml?categoryid=/templatedata/ab/category/data/AB36.xml&ordersrc=google4colic_cgy&cobrandId=ww5&s_kwcid=ContentNetwork|370860682, in particular, for concrete tactics you can try to improve the situation today.

Support is here!  If you'd be interested in joining a brand new support group for parents/caregivers of colicky babies in the Springfield area, contact amymcfadden@insightbb.com. 

Participants are encouraged to bring along their crybabies, and an evening meeting time is being considered to accommodate all families.

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Love and Skittles by Dusty Rhodes

When Evan’s birth mom came for the holidays

Reprinted with permission from the Illinois Times

Last Christmas, we had some relatives come visit. Stop the presses, right? It seemed pretty mundane to me, too, at the moment I so casually tossed out the invitation: “Hey, why don’t you and Derrion come to our house for the holidays?” It was only after I hung up the phone that the magnitude of what I had done began to sink in. Dang! I had just invited my son’s birth mom and half-brother to spend five whole days and nights in our home.

            What the heck was I thinking?

            Evan was adopted at birth. I was present in the delivery room. When he emerged, wet and wiggly, his birth mom, Samantha, told the doctor to have me cut the cord. She and I have been in pretty regular contact ever since.   I had no problem promising Sam that we would have an open adoption -- exchanging phone calls, letters, photographs, and, yes, maybe even visits. The pledge was easy for me to make, because I’m adopted and I’ve been in contact with my birth mother for 20 years.

            As everybody knows, though, promises are more easily made than kept -- especially a promise so vague, so general, so unregulated. The adoption agency that brought us together didn’t map out any plan; Sam and I were making this up as we went along. Because she lives in another state -- with her now-15-year-old son Derrion -- all our communication traveled by way of phone wires or stamps. A prolonged personal visit meant taking our relationship to a whole new level.

            I could tell I might have bitten off more than I could emotionally chew when I announced Sam’s upcoming visit during the “joys and concerns” segment at church (it was both a joy and a concern). The congregation emitted a small, polite gasp. I started to fret: Should I have consulted some kind of expert? A child psychologist, maybe? A therapist, perhaps?

            But at the same time I knew deep down inside that having Sam come visit Evan was quite simply the right and natural thing to do. She loves him. She’s a good person. He deserves to know her. She deserves to know him. Besides, he had just turned 6, and was doing so well in school, in sports, in life in general, that I couldn’t wait to show him off.

            OK, I’ll admit it. One corner of my heart fluttered at the thought that Sam might have second thoughts about Evan’s adoption. “You’re not going to stash him in your suitcase and carry him back home, are you?” I asked.

            She laughed: “No! Kids are a lot of trouble!”

            Of course, the larger fraction of my heart shuddered at the thought that Evan might decide that he loved his birth mother more than me. And Evan, who has always been wise way beyond his years, seemed to have the exact same fear. As soon as I told him that his birth mom was coming, he put on his most solemn face and did that heart-wrenching thing with his big brown eyes. “Don’t tell her,” he whispered, “but I love you more.”

            I’ve written here previously that parenting is all about pop quizzes, but this moment with Evan felt more like a pop final exam. I could not let this visit make him feel somehow torn between Samantha and me.

            Luckily, he had just eaten a bag of his favorite candy, those neon-colored fruity little discs called Skittles.

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One Mom’s Journey With Down Syndrome By Deb Gossrow

I played the violin starting at the young age of 8 and knew from then on that I wanted to perform for others, as I enjoyed touching people’s lives with the beautiful sounds of my violin.  That all changed one casual day while practicing my instrument in a room with windows, overlooking palm trees and a sunny blue sky at an Arizona university institution, half-way between accomplishing my degree.  I realized I needed to be out there in the sunshine mingling and socializing with people.  Since I had very little time left with tuition costs and limited funds, I quickly chose a major and ended up falling into social work.  I figured it was perfect for me since it included the phrase “social.”  My first job out of college ended up being focused on children and disabilities.  I had no experience in that field or any guidance to go in that direction … it just happened. 

Fast forward 14 years to when my husband and I were celebrating our 12^th anniversary in anticipation of the arrival of our first born child.  I was 36 years old.  This was a “surprise” pregnancy and not once did I consider myself an at-risk candidate for having a child with Down Syndrome, even though I was over the magical cut-off age of 35.  Yet, my ob/gyn continually reminded me of the possibility. 

I had been working with the state’s early intervention program for the past 8 years, a program for families with children under the age of 3 with developmental delays.  I’ve been a Service Coordinator, a Developmental Therapist, a Local Interagency Council Coordinator, and currently the central region’s child welfare early intervention Liaison.

The pregnancy was uneventful, and both the baby and I seemed to be moving right along without any complications.  I passed all the routine gestational tests and was not placed in any high monitoring categories.  Then, the smooth sailing was dashed within hours of his delivery.

Our son Joshua was born emergency c-section due to distress at exactly 40 weeks gestational age.  It became exceptionally quiet in the delivery room following his removal, but I was overjoyed when I heard his cry.  The medical staff showed me a glance of him and whisked him away to the NICU.  Within the next hour or so, medical staff ran in and out of my recovery room announcing tests they were running on Joshua due to his distressed birth.  I was too out of it to ask questions, as well as extremely frightened and confused.  Eventually, the Neonatologist came in to see us and explained the reason for the tests, relaying that Joshua had “markers” for Down Syndrome (see website listed below for Down Syndrome observable features).  I was completely shocked!  Shocked not that our child could possibly have Down Syndrome, but the irony that I had all these years of experience in the field of pediatric disabilities and now … one of my own.  It just happened.

Thankfully, with my professional experience, I knew exactly what to do, whom to contact, and I had somewhat of an idea of what to expect.   We have been showered with nothing but love and support from family members, friends, and community support services.  We are so blessed and fortunate to have such wonderful support and services offered right here in Springfield.

By the time this story is published, Joshua will be almost 1-years-old.  He is currently enrolled in the local early intervention program (Child & Family Connections-see info. below) receiving therapies that help him attain the most potential in his development.  He is also enrolled in a weekly baby swim class held at the Springfield YMCA and a weekly music class with The Music Factory (Musik Garten-see info. below).  We’re part of the Lincoln Land Down Syndrome Society group here in Springfield that meets monthly.  What’s great about this group is that instead of commiserating about having a child with special needs (although everyone there is a support to one another), the group connects with community resources that offer programs our children can participate in.

My husband and I are not sorry we have a child with Down Syndrome. We do not want anyone to feel sorry for us. We wouldn’t trade who he is for the world.  He is our special little guy. 

For additional information, see the following websites:

http://www.emedicinehealth.com/down_syndrome/article_em.htm (list of Down Syndrome features)

http://www.dhs.state.il.us/ei/ (Illinois’ Early Intervention Program)

http://www.lldss.org/aboutus.php (Lincoln Land Down Syndrome Society)

http://www.makingmusik.com/servlet/KM_DisplayMain?s=3110 (Music Factory)

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One Mom's Story: From toddler to Tween by Brenda Protz

Ahh, how cute my two-year-old is.  Uggh, to have a pre-teen “tween!” I am sitting at two completely different ends of the world here. My 2-year-old Jenna believes I walk on water. My 12-year-old daughter Brandy wants me to drown. Jenna loves to walk at my side holding my hand. Brandy loves to roll her eyes and stomp down the hall. “Be careful there Brandy, might break your feet if you stomp any harder,” I recently told her. Jenna loves to wear her cousin Makenna’s hand-me-downs. “This is ‘Kenna’s,” she smiles with satisfaction. Brandy expects Hollister and Abercrombie. “Hey, if you happen to need to get me any more Christmas presents, I’d love those boots at Limited Too,” she says. Jenna still loves me. But Brandy, another story.

What is a mother to do? I’ve given this some thought.

Get your pen and paper ready, Springfield Moms.

Lock all pre-teens in their rooms for 10 years.

Home school them. Never let them experience the pressures of girl cliques and having their hearts broken.

Don’t buy them a cell phone or expensive mall clothing.

Don’t let them use a computer to communicate through MSN and don’t allow other girls to come over and influence them.

Have you put your pens down?

I am sure you have.

I am living in a dream world here aren’t I?

Brandy has to experience life in order to make herself successful and have a view of the world. She has to learn to deal with other girls and their bad attitudes. She needs to know that not all guys will break her heart.

She needs to be told “No,” when she asks for that Hollister hoodie.

She needs to experience the loss of a cell phone (after it has dropped out of her pocket) to make her appreciate what she has.

She needs to use the computer to find a good job, while still learning that Dateline’s “To Catch A Predator,” is very real and that computers can be dangerous things.

Yes, this is all necessary to become a productive young woman in the world. I can’t shelter her; I can only teach her and love her and hope she makes the right decisions.

I have it figured out I think. But if I don’t – in about another 10 years I can go through it all again.

Jenna will hate me by then.

She will stomp her feet.

She will roll her eyes.

She’ll demand the latest fashions.

She’ll need a better computer and cell phone than me.

Pick your pens back up. Take down my name and number. In case I can’t be found, try Brenda Protz. P-R-O-T-Z. 555-gon-nuts.  Only a mom would understand.

Brenda Protz is a native of Jacksonville and currently lives in Vandalia. She is married to husband Randy and they have two daughters, Brandy, 12, and Jenna, 2. She is a professor of journalism and speech at Lincoln Land Community College where she also serves as advisor to the campus newspaper, The Lamp.

Vanessa, now age 3 ½, is snuggled in “the position,” the nook of my shoulder with her head resting on my chest.  She has spent extra time there this year.  Vanessa was diagnosed with and overcame a challenging chronic disease in 2007.  It was a new journey for us all, but one in which we learned a lot about resilience.

How do they do it, I thought?  The image of my child having to deal with a serious medical challenge was NOT something I wanted to think about.

Little did I know that just two months later, our family would be rushing into St. John’s Children’s Hospital because our 3 year-old, Vanessa, was suffering from bloody diarrhea that hadn’t stopped in about two weeks.  From the first time Vanessa was admitted, we were touched by the loving and attentive care we received at SJCH.  Dr. Chaudhary was diligent and ruled out any infectious disease, and we were then referred to the Pediatric GI Specialist, Dr. Sameer Ammar. 

After an endoscopy and colonoscopy a few days later, Dr. Ammar found what he had suspected.  Her entire colon was diseased and inflamed confirming the diagnosis of ulcerative colitis.  But why?  What caused this?  We cried and looked in disbelief at the photos of her colon that laid upon the table.   There is no concrete answer, and less than 1% of all ulcerative colitis patients are under age 5.  We have no family history of this condition.  Environmental triggers?  Perhaps.  We will never know.

Like all families dealing with these challenges, we found that our lives took on a new sense of what a “normal” day is like, and that you just move on.  While our daughter used to take a multivitamin everyday, now she began a series of medications that made our heads spin.  A week later she needed a blood transfusion; which reminded me WHY my father taught me the importance of being a regular donor.

The next several months were a rollercoaster.  Vanessa took high doses of steroids which made her very hungry, bloated and aggressive.  She couldn’t sleep well and was up late for months (falling asleep usually in my office at 11:30pm!). But the good news was the bleeding had stopped!  Weaning from the steroids caused some other problems, and we had a few panic calls to Dr. Ammar, who was always there to help. 

Throughout the year, she has had to go in multiple times to draw blood to check her levels.  She never once complained!  Vanessa is a trooper.  Once we got her used to the multiple medications everyday, she now swallows her pills whole and takes her liquid medicines that we have nicknamed to make the process a little more “fun.”  Kids are so amazingly resilient, and I found Vanessa giving me the strength to be a positive role model for her.    

We had a few months where she was doing better, and then out of nowhere in July, the bleeding came back.  Ulcerative colitis is fast and painful.  However, this time around, the steroids would not stop the bleeding and she got worse.  As any parent in our situation would do, I had spent hours reading reputable medical journals about the drug and surgical options for UC patients.  The Chrone’s & Colitis Foundation of America is an outstanding resource as well.  We had to switch gears.  In August, Dr. Ammar repeated the colonoscopy (yep another two days of starvation on a steroid-hungry child!) and found that things had gotten worse.

My husband and I were worried, and her first day of preschool was just a few weeks away.  Fortunately, Dr. Ammar recommended we try Remicade®, which has been on the market for a few years to treat adults with arthritis and Chrone’s Disease.  Recently, they have been using Remicade to treat colitis; not many young children have tried it, but we were ready!  It’s an IV delivered medicine, which means we spend the day back at the SJCH, but to Vanesssa it’s a safe place. 

She loves the nurses and says, “there’s toys at the doctors!”  Amy Leverenz shares her Disney stories with Vanessa and always makes her smile and Connie, Dr. Ammar’s nurse, has been steadfast in making sure we have everything we need.  The Child Life Specialists, Jen and Susan, always make sure Vanessa is comforted and kept busy with childhood fun!  The families we meet in the playrooms during our stays are all going through challenging times and our sympathetic glances between each other help to soften the moment. 

But most of all, Dr. Ammar is truly special and a great role model for the level of care you get at SJCH.  He is knowledgeable, capable and caring.  His top priority is getting Vanessa well.  He always connects with her first…makes her laugh and smile. Vanessa looks forward to seeing him!  

It’s now two months later, and Vanessa is doing so much better!  Remicade has worked well for her, and we are so grateful.  She will go in every 8 weeks for her IV treatments, and I am so relieved to say that we are off the steroid medicines and she is now just back to traditional toddler bedtime stalling routines!   

Vanessa is a social butterfly in her preschool and is always there to help her friends.  If you ask her what she wants to be when she grows up she’ll say:  a cowgirl, a firefighter AND a doctor…all very BRAVE jobs indeed! 

Thank you SJCH and CMN for providing the STAFF, the CARE and the TOOLS for the healing of our child and our family.

Sincerely,

Kim, Mike, Vanessa and big sis Amanda Little