"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  

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...

What's in an introduction?

   

  Hi, My name is Mattisa.  This is my daughter, Kerstin.  How much more do you just willingly give when you first meet a person or a group?  When you meet new people do you tell them your name, your medical diagnoses?  Not many of us do!  Then why do some feel the need to just volunteer information on their child with special needs?  "Hi, I'm "Sue", this is my son, "John", he has Cerebral Palsy, he can't walk, or talk, etc..."  Would you tell another person things about your "typical" or so called "normal" child, especially when it's personal and medical?

     I've sat in meetings and conferences and other gatherings when parents have introduced their children and they have pretty much told all in the matter of seconds.  I can't help but think and wonder, would the child want you to do that?  It's doubtful, especially if they are preteens or teens!  I can't help but think that the child(ren) would be like "Really, mom, you're giving all of my personal information out!"  

     What's in an introduction?  A greeting?  Your name?  Your age? Your medical history? These things are appropriate in the right settings.  Medical history, I feel should only be given when you're meeting new doctors with/for your child.  Think about your child, as the person first...would you really tell all at the first meet?  

     Yes, this blog is dedicated to Kerstin and our journey!  Yes, I've included medical things here about her and I've done so without giving too many intimate details.  Cerebral Palsy is an umbrella with many details underneath and so is Epilepsy, there are many types of seizures.  

Judging and Assuming!

     Judge, not the noun, the verb, means to infer or form an opinion of something or someone. Also, to assume is to take for granted or without proof.  Who wants judgement passed on them?  Who wants others to assume the things that are less positive about them?  It is doubtful that there are many among us that would want that kind of unwarranted attention.  

     However, many people living with disabilities, whether they are physical, mental or emotional, are judged and people assume that they are unaware.  People with disabilities are often looked down upon in our society.  They are oftentimes neglected and abused.  How do we go through life without passing judgment onto others or assuming something that may or may not be?  It is not easy but, it is something we need to practice.

     I cannot help thinking back to a previous post I made on speaking to people with disabilities.  It may seem as if the person in front of you with a visible/ physical disAbility cannot understand.  Or because of one's lack of education, knowledge and understanding, assumptions and judgments take precedent.  "I won't bother speaking, they can't talk" or "they may not understand what I'm saying".  Not once asking the caregiver, if the person understands or can communicate!  

     Last Thursday (8/28), Kerstin went to a new doctor at United Cerebral Palsy-Birmingham, the Life Without Limits clinic.  The atmosphere in the office was so welcoming!  Dr. Law came in and introduced himself, we did the same.  It always makes me smile when I see Kerstin smiling at a new introduction.  Dr. Law did what I'm sure most of us want our children to witness on new encounters, the person talking directly to them.  After all, we are there because it is her appointment.  He turned to me and asked, how does she communicate, I explained and talked about her Dynavox.  

     What happened next was poignant.  Dr. Law said that he asked about her communication because one of his greatest fears is that he would meet someone and they had no way of communicating, or no one understood their communication.  He went on to say that so many times there is something there and people just need a way to get it out!  How true!  He even made a movie suggestion, one I had never heard of, My Left Foot.  The story of Christy Brown born with Cerebral Palsy and he could only control his left foot.  Brown went on to become an artist and author.  The movie stars Daniel Day-Lewis and is a must order for us! 

     Don't assume and please don't judge!  Ask questions.  It is okay to communicate...you never know what can be offered!  

Princess Smiles-a-lot!

2nd Annual Alabama Angels Pageant

     The 2nd Annual Alabama Angels Pageant has come and gone!  I am sure that there were many participants that did not or could not participate in last years festivities, Kerstin included.  This year was different.  I mentioned on the Alabama Angels Pageant Facebook page months ago that Kerstin would not miss the event this year.  There would be no more hospital stays that would keep her from Hunter Hills Church! 

     You see, at the time of the pageant in 2013 Kerstin was just coming off of her 2 hospitals stay after two separate surgeries one month apart. The first being a bi-lateral triple arthodesis on both feet and the second was to have her g-tube placed.  However, pageant directors came to our home to present Kerstin with her crown, sash and goody bag!  Her day was beautiful all the same just not the full experience with all the bells and whistles. 

     The Friday before the pageant was a day of prepping and pampering for Kerstin.  Hair, nails...somewhat of an in home spa day for Princess Smiles-a-lot!  The excitement was brewing in Kerstin, I could see it all over her face.  She was so excited that she woke up Saturday morning around 4:45 a.m.  YES!  I went ahead and checked all of bags to make sure we had everything.  

     Upon arriving, the carriage rides were in full effect.  The decorations were so beautiful.  Volunteers were on hand to greet everyone, opening doors, just so much kindness.  There were booths set up to provide valuable information to the families as well.  We checked in and was assigned Kerstin's Guardian Angel.  I will tell you, I know we had the best one in the building!  

     The angels were so beautiful!  This day was a day they had the opportunity to shine and were included.  They sang, danced and told jokes...like my little lady did with her Dynavox.  

Here's how the day went...

Dressed, belly full, now it's time to prep!

Actually smiling while I'm doing her hair!

Director, Renee Lantz

Pageant Team Leaders/Coordinators

Getting ready to go on stage...her cousins at her side.

Look mommy..I have on a little lipstick!

Her name in lights!

Little jokester is coming on stage...

Kerstin with her Guardian Angel, Carol and emcee, Chris Britton

Telling her jokes with assistance!

Angels and military excorts!

Crowns and sashes..

Crowned!

A goody bag too...

The day is done...dreaming about the next one!

Access for everyone!

     While working on a class assignment, I came across somewhat of a challenge for everyone.  I will include it later in the post.  This challenge made me think about what I have experienced in the past week.  After Kerstin's therapy appointment last week, I had to go to the Sears Repair store to pick up some things for the lawn mower.  This was my first time going to this location.  I must say it was an eye opening experience.

     The experience was so touching, I had to tweet Sears about it and I've sent an email to Americans with Disabilities Act (ADA) about this and the need for better changing tables/stations in public family restrooms.  We, my daughter, my 10 year old and 4 year old nieces pull into the parking lot.  There are faint lines for accessible parking, Great.  No one was unnecessarily parked there, even better!  The store has steps/stairs to the entrance door and NO ramped access!  NOT GOOD at all!  I had to leave my daughter and nieces in the vehicle, running so that they could have air.  I had to ask the 10 year to lock all the doors until I returned.

Access for everyone!

     A few days later, I mentioned the experience to my sister.  She said something so critical yet, something I know many people do each and everyday.  When you have the ability and use of all limbs and can climb stairs without incident you don't think of those among us who cannot do the same.  

     So, I will challenge you to try this.  I think it's worth it. I even posted it to Facebook/Growing With Kerstin. 

Worth the experiment! Please take notes and share if you don't mind.

Many of us take for granted our ability to come and go as we please. With the exception of a few buildings, which are off-limits to the general public, we are free to enter any building we wish, whenever
we wish. During the next week, keep track of the buildings you enter, the streets you cross, and the activities in which you participate.

* How accessible are these to persons who are in wheelchairs, blind, or hearing impaired?
* Are the room numbers in your building labeled in Braille?
* Are the steps ramped or is there an accessible lift or an elevator?
* What areas have not been made accessible to these individuals?
* How does accessibility limit their participation in the activities in which you regularly participate?
* How could these areas be made more accessible to individuals with disabilities?

No Parking!!!

     How many times have you gone to Walmart, the mall, the movies or even your child's school and someone was parked in accessible parking and you felt they shouldn't park there?  It has been too many times to count for us!  Feelings and counts aside...they have no tag or placard acknowledging the need to use accessible parking.  Let's keep in mind, not all disabilities are visible!  The person may have asthma or COPD, Epilepsy or some other type of medical need that causes them to need to park close to where they are going. 

     We also need to "keep it real" and be honest!  People are abusing the tags, the placards and overly abusing accessible parking.  It is NOT convenience parking!  That parking is there, close to the buildings and spacious enough for individuals and families that really need them.  We have people and wheelchairs to unload and it CANNOT be done so easy in the usual aisle parking. 

     I know that every single time I have gone to Walmart, I am guaranteed to see people pulling up withe placards swinging from the rear-view mirror, when they clearly state to remove before driving. 











 The part that really bugs me is when there is a vehicle parked on the striped lines in accessible! 

That is very inconsiderate when, like I stated earlier, families are unloading people and wheelchairs.  People are parking in ramp vans which need the extra space, 8 feet is printed on most vehicles with ramps! 

     Vistaprint just might be getting business!  Whenever I see a vehicle parked on the lines, they will come out and see something similar to one of the pictures and a little message saying "Think before you park!"

Be mindful, the spaces are not a luxury!  They are a necessity!  
     

Easter Seals Walk With Me 2013-Montgomery, AL

In the midst of all the chaos; the quick approaching surgery (29 days until November 4, 2013) and the appointments before and after, the unnecessary struggles surrounding Kerstin going to school.  I completely forget to talk about the Easter Seals Walk With Me, that Kerstin has been participating in for the past 5 years.

Well, the walk was held on Saturday, September 14, 2013, her team "Faithful Friends" did not raise as much money as we have in the past but, I let the coordinator know that we would attend and had collected some donations before we found out about the surgery.  Friends and family had started planning fundraisers to help Kerstin and I out with finances after I found out about the surgery.  Needless to say, she was very understanding and offered any assistance, just to let them know.

The walk was beautiful as usual, we had very nice weather that Saturday.  Afterwards, Kerstin even had the chance to spend an hour in Target...she was thrilled =))

The day of the walk, locally, Easter Seals had raised over $20,000.00.

Kerstin with her former PE teacher, a lady I'm happy to call a friend.  Along with a new pal "Mr. Briggs" and his owner.

Kerstin with her cousin, a therapy pal "Jackson", and his owner.

Kerstin (a bit hidden) with cousin again, and "Roxie" sitting on her lap.

Kerstin and her therapy friend "Mollie".

Kerstin, her former PE teacher, and mommy. (dark, sorry).

Kerstin and my nieces.  Lots of love! (dark-shaded area)