There and Back Again...

I don't make these things up. Elisabeth comes up with stuff like this on her own.  After reading over the symptoms of mastoiditis and looking at the picture, I realized we had something more than a bump on her head. It was a bump behind her ear I  found on a visit to Portland Maine over Thankgiving break.  I saw it while washing  her hair and asked if anyone had bumped her head enough to cause a bump this size.

Well, we are all guilty because she's not the easiest 18 year old  to get in and out of an airport taxi stand where security is yelling "move, move move!"  Okay, buddy, cut her some slack for not being able to get out of the car on her own! Nor is it convenient for her to get on and off an airplane because sometimes she's so spastic that she  cannot be carried down the aisle without bumping something! The restrooms were not up to her standards, either, so we had  major mobility issues there, too!    (We did run into Senator Lieberman ... )

When we got home from our trip, the bump started  looking like a cyst or boil so visited our primary doctor who thought it could be several things given her history of cholesteatoma.  The primary care  prescribed a broad spectrum antibiotic and "wait and see" diagnosis from our ENT this Thursday.

The challenge for me is managing this bump turned  "boil" oozing out from the back of her ear in two places. Peroxide, neosporin ointment, q-tips, and TLC.   She's not even phased by all this, but she can't go to school in this condition so we are at home waiting on a primary  care doctor to call about managing  this yucky ooze coming out of her head. 

This was suppose to be a fun week for Elisabeth.  Swimming on Tuesday and a  trip to the museum on Friday.  It was a great year for Elisabeth health wise overall.  No infections or anything to worry about in 2012 except that her ENT wanted to explore the ear area for cholesteatoma re-occurrence which was 40%. I guess now he has a good reason to proceed. Unfortunately, it requires a very invasive surgery complicated now by an infected mastoid. Exploring her ear for the culprit-- most likely a skin cyst or cholesteatoma -- that manifested itself in Elisabeth's series of unfortunate medical events.

Last hospital stay, Elisabeth was treated to a reading of  Jane Austen.  This time, I see a Tolkien fantasy about hobbits, elves, and dwarves in her near future.

Sensory Processing Disorder Information

What Is Sensory Processing Disorder?




COMMUNITY SERVICE EVENT

Wednesday September 19, 2012

6:00 – 7:30 P.M.

Springfield Township Senior Center

9158 Winton Road



Dr. Laurie Jahnke will be presenting a FREE lecture on brain and nervous system function and their critical roles for social, motor and academic learning.



...If your child has been diagnosed with ADD/ADHD, Autism Spectrum Disorder, Sensory Processing Disorder or other learning disorders, you will not want to miss this presentation!



Learn of drug-free treatment options that can help “turn on the lights” to your child’s nervous system and allow them to reach their full learning potential!



Great for parents and teachers!



PLEASE PHONE 513-931-4300 TO RESERVE YOUR SEAT Space is limited- the first 50 people to register will be entered to win various raffle prizes that evening!

What To Expect Neo Natal Diagnosis of Agenesis of the Corpus Callosum

If you've had your prenatal ultrasounds and they're seeing dilated ventricles, cysts, and shadows around the brain stem, it can be a bad ultrasound.  On the other hand, if you are told that your ultrasound indicate a red flag -- shadows around the brains stem, cysts, dilated ventricles --  be prepared. 

It's possible that many of the complications in global delays we experienced after our daughter's birth began in utero.  Our baby, for example, didn't do what other babies do preparing for the journey through the birth canal. She was very subdued.  Not active.   She wasn't going to come out.   In fact,  I was on my maternity leave for 3 weeks and still didn't have the baby.   Why did I wait?

Looking back, I wish that I would have taken the advice of the neonatal specialist at the Seton Center at Good Sam and had the baby around my due date.   Instead, I opted to follow the advice of my Ob/Gyn who thought the placenta looked fine and suggested to wait it out.  Of course, she didn't know anything about Agenesis of the Corpus Callosum then.  Nobody knew anything about  complications or delays so I waited and waited.  

My Ob/Gyn ordered daily ultra sounds after I was  1 week  overdue to check the placenta and organs. I probably should have followed my instincts because years later I learned that "cortical visual impairment and macula atrophy" which is written on her birth record generally results from oxygen deprivation at birth.   So if you're concerned about your baby's ACC diagnosis, contact me at elisabethssite@yahoo.com.


If  you're pregnant and concerned, write me at Elisabethssite@yahoo.com.

Navigating ADA in 2011

What's new with ADA? Most of the changes are about navigation challenges that people using wheelchairs face everyday of their life.

Thank You President Obama & First Lady Michelle Obama

I want to be the first to congratulate you on a job well done. First, thank you for signing the Healthcare law so that my daughter will no longer be discriminated against because of her disability label. I also want to thank you for making it harder for insurance companies to discriminate against families by charging higher premiums due to pre-existing conditions or medical histories.

Secondly, as for responding to the challenges we face as a nation regarding energy consumption and responsible environmental stewardship, I would like to thank you personally for living up to your campaign promise.  I also understand the challenges of economic sustainability so I applaud your efforts here as well.

Third, I would like to say thank you to our First Lady Michelle Obama for taking an interest in our children by educating families about childhood diseases resulting from obesity.  We have so much to teach them about the impact of a healthy diet on their overall development.   I'm also very happy about the little garden you planned for the White House, too. It inspired our family to add  a few more planting beds in our own  back yard so we have more control over what we feed our children.

I am sorry that more people haven't showed gratitude and appreciation for what you've done so far. I can't imagine a single American who will not benefit from the Healthcare law.   I'm hoping that during your second term, we'll see even more improvements in the quality life for all Americans.

 Thank you, again,  for reaching out into the margins and acting on behalf of all people while also keeping focus on the big picture.



Kind regards,
Elisabeth's Mom

Thank You

I've received many e-mails over the years thanking me for writing about my experiences. Unfortunately I have to turn off the "comments" due to the spam I receive so I do appreciate the emails.  I'll turn it on again.

Aloha!

Found Summer Harrison's blog that focuses on disability rights issues. Looks like they're  having issues in Hawaii.

Matthew's Mom ACC All-Inclusive Site

A website start here from a different perspective living with an individual affected by Agenesis of the Corpus Callosum. The experience for each family is so unique and equally different is the "caretaking" aspect of these young children impacted by ACC.

Waivers, Levies, and Universal Design, Oh My!

One thing I truly value about Hamilton County Developmental Disabilities (HC/dd) formally known as MR/dd is the (tremendous) availability of knowledgeable healthcare professionals, therapists, and special ed. teachers who help parents make those necessary connections to becoming their child's best advocate. And mostly, I appreciate the support and encouragement I receive from teachers and therapists because when I feel like I'm riding a runaway train, they slow you down to get you back on the track.

Just yesterday, I received a home visit from the OT/PT team through Bobbie B. Fairfax School to get information about adapting our bathroom to accomodate Elisabeth's growing needs. Later on one of the OT's sent home with Elisabeth a DVD about universal design ideas for our home. (For more information visit: http://hec.osu.edu/ud/ ) It's the first major step we've taken to actually change our homecare to benefit Elisabeth and the rest of the family.

Another program I learned about through MRDD was the "waiver" program offered through the County Board of HC/dd or the County Job and Family Services. The waiver is a way that Medicaid can pay for services to keep your child at home instead of a long-term facility or nursing home. (For more information, visit http://mrdd.ohio.gov/ )

Having a child like Elisabeth comes with so many more responsibilities than with a typical developing child. As her parents and caretakers, my husband and I take full responsibilities financially, emotionally, and physically meeting all her needs. Never once have we ever thought about long-term care for her because we thought we could manage her needs. Never once have we thought about Medicaid.

As Elisabeth is approaching her 15th birthday, my husband are experiencing the limits of caring for her. She is becoming harder to manage carrying her or walking her through the house. Even a lightweight at 60 pounds she requires the help of a strong adult to assist her in every aspect of living.

Emotionally, she is going through changes most kids go through her age, but it's more wearing on me because while I'm trying to comfort her, I can't figure out half the time what's wrong or why she's in distress. Sometimes, she can be up until 2 or 3 a.m. in discomfort or pain..

I know parenting is "exhausting" in general. But I'm not talking about "exhausting" as in the hectic lifestyles we lead naturally carpooling here and there, dealing with last minute changes in scheduling, or other surprises we find ourselves in.

I'm talking about real physical, emotional, and financially draining lifestyles of caring for a child with special needs 24/7. The wheelchairs in and out of the car. The transferring. The rocking. The lifting. The dressing. The bathing. The drying off. The waiting. The feeding. The carrying here and there. The lifting and pulling and pushing. Going to Walgreens to get a prescription filled. Getting the wheelchair in and out of car for the 50 millionth time in and out of the store, and back home.

It's amazing we haven't all left for crazyville.

Even though Elisabeths' IEP is geared at developing skill and ability working toward independence, she'll always have to rely on somebody else to do everday occupational things. Children like Elisabeth are exhausting because they need physical assistance for every aspect of their life from getting out of bed to the school bus to the school and back home again.

It can be financially draining on many families, too, because most of the stuff we need for simple, basic living is very expensive. Prices for adapted dinnerware, seating, beds, bathrooms, showers, bicycles, walkers, wheelchairs, braces, and basic age-appropriate toys are in the thousands. A simple wheelchair converted manual ramped van is the price of a Mercedes Benz. A simple battery operated communication device, again, in the thousands. Adaptions to the home is an ongoing, ever changing challenge, that requires special products that are outrageously prices. A special adapted toilet paper roll for $80.00?

That's why we need to keep Hamilton County Developmental Disabilities and programs, schools, and outreach in our community. We need to keep it fully functional and not let it go like I'm seeing with Job and Family Services. (I just heard about big layoffs there and it scares me that nobody in government sees any value of having outreach coordinators or interventionists or case workers helping families in need.)

We need to keep HC/dd (MR/dd) services, schools, and programs functioning because there's nothing out there for parents and caretakers to help educate us about the expectations of parenting a child with special needs.

And they understand the challenges we face every day. They can point out the horizon line for us when everything looks a little fuzzy...

Ranting ...

Sixteen years and three doctor's office visits later after completing the necessary medical forms for her school, we find out from a new doctor that one of  Elisabeth's diagnosis (cortical visual impairment) resulted from oxygen deprivation at birth.

What Not To Say....

I'm sure people have the best intentions, but it's really bothering me how people respond to the death of a child with severe disability labels.

I realize people say things out of nervousness. Lord knows I've been known to say the dumbest things. But when it comes to the death of any child, regardless of the circumstances or disability, the sorrow and pain is the same for any parent and sibling. Sometimes hugging the parent and saying "I will miss her, too" is just enough. Take over a meal or cookies for the siblings, but please, please, please, don't try to minimize or maximize the significance of someone's life due to their disability.  People are not their disability labels.  Regardless of how difficult disability might look to someone from the non-disability community, that person  will be missed all the same with or without their disability.

Just be there to comfort and listen.

Condolences & Sympathy

Elisabeth's young friend, Kayla, passed away last week.   Kayla was just 12 years old.   Elisabeth and  her family sends their deepest condolences and sympathy to Kayla's family and  friends.

Attention High School Students with IEPs & 504 Plans

Don't want to miss any of the four sessions designed  for parents who have students transitioning -- when high school ends and the bus stops coming!

Dates:  February 7, February 21, March 6, and March 20th

Time: 6:30 to -9 pm

No fee! No cost!

Where: 5th Floor Conference Room in Children's DDBP Building, 3430 Burnett Avenue, 45229

For more information or to register by phone, contact Barbara at 513-221-4606

Register here pressing "buy tickets" (no charge)

Play ball!