Wordless Wednesday- Last Day of 2014

Sharing a discount this cold and flu season!

     Enjoy $1.50 off Kleenex Lotion or Anti-Viral Tissues.  

Remember, if you're sick, stay home!

"Parenting a Child With a Disability Through the Holidays Stress Free"

     The Alabama Parent Education Center (APEC) has some tips on avoiding additional stress during the holidays.

While most children live for the holiday season, it can be an extremely stressful time of year for children with disabilities and their families. The disruption to their routine, unfamiliar sights and smells, the house full of noise and people - it can all prove to be too much. Holidays are all about the family, but it can be hard keeping everyone happy.  While the words "stress-free" and the "holidays" don't often go together, at the Alabama Parent Education Center we want all children to enjoy this special time of year.

Tips To Prepare

To help you prepare for surviving the holiday season, we have compiled the following tips to help you, your family, and your child with a disability have a much happier, reduced stress holiday.  Good preparation is the key so here are a few tips to help you prepare yourself, your child, and your family.

Reduce The Stress.  Try to find ways to reduce the stress - both on your child and you. Schedule in quiet times and create chill-out zones in your home. Remember, your child will pick up on your stress levels, so try not to over-stretch yourself.

Ask For Help.  Friends and family may not know how they can help unless you tell them. Give them a list of things they can do to support you - from looking after your child while you spend quality time with your other children - to helping you finish the holiday meal.

Wrap Up Familiar Toys.  If your child is not keen on opening presents because they're new and unfamiliar, try wrapping up some favorite toys. Sometimes unwrapping something familiar is very reassuring.

Give Your Child A Job And A Schedule.  Always give your child a job to do at family gatherings.  Giving them something to do reduces their stress of having people in the house. I also give them an itinerary so they understand, for example, that people stand around and chat a lot, and that is part of the occasion.

Manage New Smells.  Add cinnamon to your child's play-dough to gradually introduce new smells. One thing that people with autism complain about during the holidays is the many different perfume smells coming from visiting adults. Ask your family and friends to hold off on the perfume.

Work On Gift Giving.  Help and encourage the person you are caring for to give gifts. This provides an excellent opportunity to work on social skills, like thinking of other people's needs and interests, and being kind and helpful. Support your child in making gifts for their family and friends and assisting them in giving out the presents as well.

Reserve Some Special Time For Your Child.  It's easy to get overloaded with festive preparations at this time of year, so plan daily activities to make some special time for your kids - ie. 5 to 10 mins of undivided attention. Let your child take the lead, tune into their world and see it through their eyes.

Create A Weekly Calendar.  Print off a week-to-view calendar page from your PC or the internet and add a picture of your planned activities during the holidays (divide into morning, lunch afternoon etc) and this will help put your child at ease about the week ahead.

Prepare Your Family.  Talk to family members ahead of time. Discuss your child's specific needs, and gently but firmly tell them what your plans are. Be sure to let them know that this will make the whole experience better for everyone. Ask for their support.

Prepare A Bag Of Activities.  When you are visiting friends or relatives, fill a backpack with things your child finds comforting or enjoys playing with - toy cars, a stuffed animal, a CD and CD player, ipads, or a few books. If your child gets over stimulated, find a quiet corner or a back room and pull out the backpack.

Easy To Open Presents.  If your child has trouble with fine motor skills doctor their cards and presents to allow them to open easily. Makes for a much happier time for all and gives your child a sense of satisfaction that they can complete tasks.

Have a Code Word.  Have a code word your child can use if he or she feels overwhelmed and needs a break. Assure your child if he or she uses the code word, you will respond right away. Again, giving children some control during activities that may be over stimulating for them will reduce anxiety.

Prepare Before an Event.  Before you leave for holiday parties, parades, or other fun events, have a quick family meeting so your whole family knows how long you plan to stay and how you expect them to behave. This will benefit neuro-typical children as well, since any child can get overwhelmed with the excitement of the holidays. Continue to make your child's sleep schedule a priority, even in the midst of so many special events.

Prepare for Food Allergies.  If your children have food sensitivities or allergies that prevent them from eating holiday treats, plan ahead to offer alternatives like all-natural candy or a gluten-free treat from home. Children with neuro-behavioral disorders like ADHD or Autism often already feel different, so be sure to include them in as many holiday festivities as possible.

  

 Limit Holiday Decorations.  If your child is easily over-stimulated, limit holiday decorations in your home. Too many twinkling lights combined with smells from the kitchen and other holiday distractions, while enjoyable to most, can be too much for children with autism, ADHD, or sensory disorders. Let special needs children help you decorate for the holidays so they are involved in the changes that take place in their comforting environment.

APEC is here to help

APEC provides free training, information, and consultation to families.  Visit our training calendar for more information about learning opportunities at www.alabamaparentcenter.com  or call our center.

The contents of this publication were developed in part under a grant from the Alabama Department of Child Abuse and Neglect Prevention.   To help support the ADCANP mission visitwww.ctf.alabama.gov.  Parenting  V.2

To view our updated list of all training events visit our online calendar at:

http://alabamaparentcenter.com/events/calendar.php  

December 17, 2001

     Kerstin was on her way to change my life in more ways than I could ever imagine. I don't know what I can say that hasn't already been said about my love for this little girl that has done amazing things in her now, 13 years of life!  Kerstin has and continues to touch so many hearts with that big, bright smile of hers.  I've told my family on several occasions that Kerstin has this ability to make people love and want to be around her,

     Last year, I wrote the post "We Met!" I was excited to meet this person that was growing and moving inside me.  I was  happy to see the person that I would be "mom' to.  December 17 is a day that this momma cannot forget.  I couldn't believe that I was to be someone's mom and now, I cannot believe that she is a teenager!!! 

     Kerstin knows that she is loved and cared for by so many people.  She has a big day coming up!  Glad she is feeling better, we are skipping school and going out, then she has to go to her cousins school for their Christmas program.  Friday, she is going to see "Annie" on it's opening day.  Saturday; a big day is planned...an awareness party, celebrating KERSTIN!   Pictures will come later. 

   So, to Miss Kerstin, just an ever so gentle reminder, using the words of Bruno Mars:  "When I see your face, there's not a thing that I would change, cause you're amazing just the way you are..."
You are amazing girl...this is your day.  Happy Birthday, I love you so much my princess. 

Happy Birthday Kerstin!

Happy Thanksgiving!

Enjoy you family and friends!

Wordless Wednesday 11/26/2014

Wordless Wednesday-11/12/2014

Happy Veteran's Day

     To all the men and women that are serving, have served and the deceased, Thank you for your service!  If you have served, and suffered or are suffering from post traumatic stress disorder, hopefully you are getting the help you need and have a great support system!  

Not Our Friend!

   

     First, the story behind the Wordless Wednesday 11/05/2014 picture.  When we are home I usually sit on a stability ball to give Kerstin her boluses.  This smile happened when I was about to sit, the ball started to roll and I made a sound that apparently had her "tickled pink"!  What a smile?!?

      Now, I can think of a few people and things that fit the category; "Not Our Friend!"  When raising a child with "special needs" you encounter things along the way that just are not friendly or ideal.  When these happen, we push forward.  I am especially amazed by my daughter's strength and courage.  I often say that I wish I had just an ounce of it.  

     It was this time last November that we found out that Kerstin would not be going home after her spinal fusion as originally thought.  She hadn't been able to take a small amount of her bolus without abdominal distention, not just a little bit either. So, for that unexpected illness, Pancreatitis comes to mind a year later.  Definitely not our friend!  She was diagnosed until a few days and many tests later but, she had it.  My child had been diagnosed with something the doctors and nurses said is rarely seen in children.  

Spinal Fusion had gone well.  She was dealing with something else.  Receiving TPN and Lipids for almost 3 weeks because of Pancreatitis.  It didn't steal her smile.

     Epilepsy/Seizures, I don't think I really need to explain why they are not our friend.  For me, as Kerstin's mom, they seem to come without warning.  I am very thankful for the Facebook pages that I have found.  They are filled with links and information on how seizures come on and what the person feels before, during and after and episode.  I've never had a seizure but, Kerstin has had quite a few.  They are hard to watch.  As a parent seeing your child seemingly looking at you but her eyes are so void it's like she is looking through you!  Not even a gentle rub can stop them.  They don't leave until they are ready or Diastat is administered.  Even then, as we saw earlier this year, did not immediately work.  Seizures can be vicious!

     Spasms and spasticity are not out friend either!  We have muscles all over our bodies, that means that spasms can happen anywhere.  Kerstin usually has spasms in her legs that causes her to at times violently kick.  At times, gently rubbing them can sooth her and others required a pain med to cease.  Spastic Quadriparesis is the medical terminology or diagnosis given as types of Cerebral Palsy. 

     Sleepless nights, are not our friend.  Kerstin goes through these phases of having very sleepless nights.  Some nights, she will wake up at midnight and not fall asleep until the next morning...6 a.m.  That isn't good for anyone. 

     Medicines that do not work and cause other issues, not our friend.  That recently happened with the scopolamine patch.  The first patch, used to help with drooling, was used September 6.  A few weeks in, I knew it didn't seem to be helping, I decided to give it until November 6.  Had to discontinue them as of November 3, causing a rash behind both her ears.        

Right ear

Left ear..upside down

     I could go on and on about the things that are "Not Our Friend", on this journey, I can only imagine there are plenty of things that aren't friendly, that require more energy than others.  As the saying goes, we have to "role with the punches".

More to come...Neurology appointment today.  Hopefully we will have an update on the recent seizure activity. 

Wordless Wednesday-11/05/2014

An Unforgettable Day: A Look Back

     Monday, November 4, 2014.  A chilly morning in downtown Birmingham, Alabama. We around the night(11/3/13) before so we wouldn't have to make to two hour journey at 3 a.m.  We got to the hospital at 5:30 a.m. to make sure Kerstin was checked in, all forms filled out.  We met team after team, nurse after nurse.  It seemed like an overload but it was reassuring that my little angel was in good hands.

     Around 7:30 a.m. the nurses came in to take her back so that the could begin the anesthesia and all that came with spinal fusion prep.  We were told that someone would periodically come out to inform of what was going on and that I needed to leave cell numbers so that they could contact if we left the waiting room.  Yes, they suggested, getting a change of scenery, it would be a long surgery.  About two hours later, I got a call to say that Dr. Killian had started the incision.  It took a lot to not cry.

     It would be hours before another report would come and even longer before I would see my love.  The entire process was pretty much all day.  It was around 4 p.m. before she was out and in recovery and it wasn't until around 5 p.m. before I saw Kerstin.  It was a bit of a shock when I did.  I had been warned that she would be getting a lot of fluids while she was having the surgery and that with her lying face down, it would settle to her face and arms, causing significant puffiness.  Understood, but actually seeing the difference was shocking.  Surgery went well.  Dr. Killian showed me her after x-ray picture and it was a huge difference.  My sweet pea's spine was straight!

    Kerstin would be on the 7th floor in PICU for the next 24 hours, then onto the 10th for what we thought would be for the next week. I never knew that ICU was such a busy place!  Not as quiet as I thought either.  This would be a long 24 hour stay.  Over in the night Kerstin started having some complications with oxygen and her blood pressure dropping.  She needed more blood.  She actually needed the 4 units we were told to have on hand.  We had to use the blood bank because the four units from her family had clotted or congealed.  She needed that pain pump overnight as well.

     Just being in somewhat of an upright position overnight, the puffiness and swelling was already going down.  It wouldn't be until late the following evening that she could leave PICU, she was headed up to 1046H.  That's where we would live until Thanksgiving Day 2013!

Looking back...it's been a journey!

More to come...

Wordless Wednesday--10/29/2014

Scars of Strength

     As November approaches, I can't help but think of the year that was 2013!  This was a year filled with what seemed like surgery after surgery, hospital stay after hospital stay; three in one year.  No matter how hard it seemed to me and for us, I am aware of the families we came across that were dealing with a little more than we were.  However, Kerstin was dealing with a great deal.  At times, I felt like she was dealing with more than any little girl should have to deal with.

     I've said it before, Kerstin's will and strength gives me the strength to go forth each day.  There are times that I have had absolutely no idea where the strength has come from to continue doing the things I do for her each day.  I know that if my sweet pea can smile through the things she's endured in her 12 years, I can keep fighting!  

     "Scars of Strength", came to mind when giving Kerstin a massage after a bath one day.  I was looking at the scars on both her feet, so long and almost around the entire foot, looking as if it was sown back on, with pins/screws to boot.   The bilateral triple arthodesis, was done because her feet had started to turn in  at the ankles and had gotten to the point that she could no longer wear her AFO's and the bone was starting to cause callouses on her feet.  We were even told that if her ankles continued turning, she would not be able to wear shoes.   Now, she is able to wear her AFO's and shoes, comfortably. 

Day of surgery 02/28/2013

     Then, there's the g-tube, an everyday reminder that there is an unnatural hole in her stomach.  Yet, this "scar" is there because she was no longer able to eat the way she had been most of her life.  It was unhealthy not to mention unsafe.  She aspirated, silently, during a swallow study at Children's Hospital.  

Kerstin's new belly button...

     Kerstin's biggest "scar" is over 17 inches long and directly down the middle of her back.  She endured over 7 hours of surgery to have a spinal fusion.  The incision is a few inches from her neck down to her tailbone.  Underneath the scar, rods and more screws to correct a 50 degree curve that had started to cause problems with her lower right lung. 

One month after spinal fusion. 

Before and after spinal fusion

Continuing to heal...

     Kerstin even has scars from central and PICC lines that had to be placed during her spinal fusion.  Still visible are scars on her neck and her left bicep area. 

PICC line scar

Central line scar...and scopolamine patch

     So, Kerstin's "Scars of Strength" are just that, signs that she is a tough little girl.  She has more strength than many.  I've looked at her, watching her in hospital beds, at times with so many tubes, lines, and wraps covering her little body and have wondered; "How much of this can one child endure?"  "How does she manage to smile when in so much pain?"  Faith!  Strength!  No one in her life telling her to give up!  No one with negative vibes surrounding her!  
     Her scars, are reminders for me.  Don't give up fighting.  Be strong and have strength...



More to come...

Wordless Wednesday--October 15, 2014

About yesterday...

     Since yesterday was World Cerebral Palsy Awareness Day I had to make a post, it couldn't be the usual "Wordless Wednesday" post.  So this one will be a "Throwback Thursday" combined with a "Wordless Wednesday"!  Enjoy!

Cousins--best friends.  October 2013

Kerstin on World CP Day October 1, 2014.

More to come...

Cerebral Palsy Awareness Day...not just a day!

     I hope you have on GREEN!  Today is World Cerebral Palsy Awareness Day!  What does that mean?   Awareness to those that don't fully understand Cerebral Palsy.  Awareness to let the world know that more and more people are both with Cerebral Palsy and countless others are diagnosed with it every day.  What do you know about Cerebral Palsy?  

     Don't worry, Cerebral Palsy is not contagious!  Cerebral is of or pertaining to the cerebrum of the brain.  Palsy or palsies are muscular conditions that are defined by tremors of the body parts.  There are three types of cerebral palsy:  spastic, which causes muscle stiffness and difficulty with movements;  athethoid, causes involuntary movements and ataxic causes problems with depth perception and balance.  So, there is no catching any of those. 

Cerebral Palsy info

      For so many families, mine included, Cerebral Palsy is not just a term, awareness day is not just like any another day, it's life.  We live and battle each day.  These battles include those stiff muscles, seizures, wheelchairs, countless doctors, therapists, specialists, medicines, hospital stays, surgeries and many sleepless nights.  I haven't met a parent of a child with special needs that don't understand what I am dealing with and they have faced some of the same battles or they are about to.  Connections are so important. 

     Along with the struggles and the battles, there are immeasurable joys that come along with raising a child with special needs.  I know that raising Kerstin has changed my life in ways I will never be able to fully explain.  I am more patient, having to speak up for her has bought out the advocate in my...that voice that will speak for those that cannot do it for themselves.  I will type/write too!!  I am not only Kerstin's mom, I'm her advocate too!  She has forced me to grow and become a better person. 

My reason!

     So, as the world is made aware of Cerebral Palsy, I encourage you to follow some of the links in this blog post.  Read up on Cerebral Palsy and gain a better understanding of our loved ones living with it each day! 

Cerebral Palsy: Kids Health

World Cerebral Palsy Awareness

My first blog post:  Life!

More to come...

Her Wheels...My Shoes...

     

   There's a saying that goes something like you don't know about a person's life until you've had the opportunity to walk a mile in their shoes.  Basically, until you have had to go through what the next person has gone through, you don't have a complete understanding of what they deal with each day.  This is especially true  when it comes to understanding what a family is dealing with when they are raising a child with special needs.  Oftentimes, when raising a child with a disability, things don't happen as easily or as quickly as they usually would.  Nor do they happen as others traditionally think that they should happen.

     I've seen post after post on blogs and articles where parents of children with disabilities wanting people to understand them.  Just because they have a child with special needs doesn't mean that they want a life where they don't have the constant worry about their child(ren).  This life, of raising a child with special needs does require dedication and a tough skin.  There is also a facade that shows extreme strength.  Underneath it all, we need someone to listen to us, to be there and just to understand.

     Her wheels...my shoes...you can't understand what we have to go through unless you've done it.  I can guarantee you that most families raising children with special needs don't want others to sympathize or feel sorry for them.  We truly want understanding, and a little compassion!  




     When we're a little behind for an appointment, school or other things, know that it is not intentional!  Think about our situation.  It is not one of those that I can say to Kerstin, go get your shoes, your clothes, or get dressed, eat your food, brush your teach...take your meds.  I have to do all of that for her!  Then, I have to do them for myself.  Let's also add in the factor of a sometimes spastic child. Dressing is little more difficult.  

     When the journey is understood, it means more than you even realize.  Take a stroll in her tracks and a walk in my shoes!  Tell us about your journey...

More to come...