Wednesday, November 20, 2013

'TIS THE SEASON FOR DYSFUNTION: The Kid Edition

A prudent man foresees the difficulties ahead and prepares for them; the simpleton goes blindly on and suffers the consequences.
~ Proverbs 22:3, TLB ~

It was 3 AM that year.  Unable to sleep from sheer excitement, our young son felt obligated to wake the family to tell them that a certain obese individual, known to wear red and travel by sleigh, had been at our home in the few hours previous to this rude awakening.  We tried to settle him back down to sleep, but by 5 AM, his older sister had joined him too.  It was full blown chaos.

Another year, our celebration with friends ended early as our toddler puked on the floor right next to our Christmas tree.  She was having yet another allergic reaction to a new class of antibiotics, which sent us once again to the emergency room.

Then there was the year where one of our kids had a complete anxiety meltdown, storming away from the table, refusing to eat any of the Thanksgiving dinner.  Even the long-awaited, whipped-cream-adorned pumpkin pie would not deescalate this episode, which no one understood.

These are just a few of the joys of parenting children with special needs during the holiday season.  While we fantasize about it being a magical time, creating sweet memories for kids, there can be a whole cocktail of complications that plays into the big picture of the holidays.  Our kids often experience some of the same unbridled joy of other children (as in the 3 AM story), while having their diagnosis factor in at the same time.

Just like the predictable conflicts in our marriages this time of year, our children can and do face challenges in November and December that we can anticipate.  Seeing those difficulties ahead, God tells us we are wise to prepare for them.  If you have not already begun preparing for the holidays, now is the time to start.  

 

Make Dietary Preparations

Food is a huge issue on so many different levels.  Here are some top tips:
  • Make your hostess aware of any allergies at least a week prior to any holiday gathering, to afford them ample time if they would like to make adjustments to the menu or even have certain items out of the way (such as peanuts for the severely allergic).  You can also make certain the hostess understands if you have to bring special dietary items, such as gluten-free foods, to assemble an individual plate for your child.
  • Have your child sample some of the foods associated with a holiday that might challenge them.  Food textures can be a contentious trigger for those with sensory issues.  Desensitizing ahead of time can offer some relief and lessen anxiety.
  • Institute the "no thank you bite" rule where your child learns the courtesy of taking a small sample of a food they dislike on their plate.  If this is too much to overcome, try to teach your child to at least say "no thank you", if they are verbally capable.

Make Activity Preparations

The expectations many adults have for children never ceases to amaze me.  Since kids will be kids, make the holidays special for them by preparing in advance cognitively and physically appropriate activities that they can enjoy for the entire holiday experience:
  • Walk yourself through the entire holiday, including travel to your destination.  (We have many good articles on traveling with children who have special needs on our Pinterest board.)  Soothing items, ear plugs for the sound-sensitive, fidgets for the sensory or energetic child, and a favorite quiet time toy or activity are a must for the holidays.  We have been known to pack our own sensory bag that I discreetly tuck in my purse.
  • Speak with your hostess ahead of time, and be prepared to speak with your fellow guests about your child's use of an iPad or tablet device at your gathering.  People who don't live the same lifestyle and circumstances we do likely have no knowledge of how this tool is used for kids with challenges.  A simple preemptive explanation can prevent the impression that your child is rude or addicted to electronics.
  • This time of year is perfect for teaching your child applicable life skills.  Because kids are eager to be a part of all involved with the holiday preparations, start now with age appropriate tasks like table setting, dish washing, simple food preparation, and even gift wrapping.  If you are hosting the gathering, let your child's new skills shine in front of guests.  If the party is away, teach your child the etiquette of asking if they can help the hostess.

Be Vigilant About Rhythms

  • The value of sleep cannot be overstated.  Despite some late nights, jealously guard your family schedule by getting your child to sleep as close as you can to their regular time.  When sleeping out of town, follow the same bedtime rituals such as book reading, bringing along the child's pillow, using their own weighted blanket or favorite snuggle.
  • Parents need to also be mindful of regular mealtimes for their children.  While we can find ourselves distracted by all of the activity, our kids thrive on structure.  When their blood sugar gets out of whack, so does behavior.  Setting an alarm on a cell phone can make for a much happier outcome for the entire family.
  • Maintain a rhythm of switching off child responsibilities with your spouse.  If you were in charge of making sure the kids were fed at his family gathering, perhaps your spouse can take charge of it at your family gathering, and so forth.  This will keep your child grounded in the care of their own parent while also keeping each of you from feeling overloaded.

Have an Alternate "Plan B"

Raising children with special needs is a lesson in expecting the unexpected.  Medical crises know no holidays.  The wise parent will make certain that they have "prepared for the worst and hope for the best."
  • If you are traveling out of town, make certain you know where the nearest competent medical facility is located.  You may have your child's specialist identify and/or communicate with treatment centers near your destination.  This gives you a layer of protection if your child winds up inpatient while you are visiting away from home.
  • Do not fly without checking in on the TSA web page for "Travelers with Disabilities and Medical Conditions".  Following their prescribed guidelines and rules will make travel much smoother.  Additionally, a travel letter from your child's specialist will help with smooth passage, not only through the TSA checkpoint, but also with medical staff at your destination, should you need them.
  • Have your guests phone numbers saved in your cell phone if you are hosting the celebration.  This way, if you need to contact your guests on the chance that your child's health issues flare up, you will not have the added stress of tracking down their contact information during an emergency.
  • Talk to family about how everyone would like to treat the Thanksgiving meal or Christmas gift opening if you are hosting, but have to head to the hospital.  Creating a plan as a family team helps diffuse some of your stress along with creating some wider family understanding for what you live with every day.
  • Don't be afraid to exit a gathering early if you see that your child is nearing overload.  Making your immediate family a priority is always more important than pleasing relatives and friends.
  • Don't be afraid to bring the holiday to the hospital.  Small scale methods of making the holiday special for your child, such as favorite music or DVDs, small gifts or decorations can help if they have to be inpatient.  Child life specialists at medical facilities are just a start of the excellent resources available to your child to help with the difficulty of inpatient and outpatient care in any season.
  • Be prepared if boundaries must be set with exposure to germs.  While the holidays typically mean family, work through talks with the support of your spouse (See yesterday's post.), and develop your speech if you have to assert yourself for the well-being of your child.  Smaller gatherings staggered throughout the holidays or having to completely opt-out one year are not the end of the world.


Get Control on the Influx of Toys

Toys and gifts can be such an area of challenge for families facing special needs.  Relatives or friends can end up either giving gifts that are not suited to our child's ability level, or they avoid giving a gift because they are unsure of our child's ability level.  Spelling things out clearly for others can offer the best outcome.
  • Once again, I recommend that you check on our Pinterest boards for "Kid Stuff", "Products I Love", "Sensory Issues", or "Technology for Special Needs" to get some wonderful gift ideas for children with various challenges.
  • Places like Toys-R-Us offer you the ability to create a Wish List Registry for your child.  You can do the same through Amazon.com.  The nice part of creating such a list is that you can have photographs of the desired items available to those wishing to get your child that much-wanted gift.
  • Two key points to remember in toy-buying for children over the holidays, 1) DO NOT overbuy for a child.  Because people sometimes want to overcompensate for a child's special needs, they overdo it in the toy department.  This can create the opposite effect making your child either overwhelmed or overstimulated; 2) Durability matters.  Whether it is gross motor difficulties or executive functioning challenges, our kids are naturally harder on toys.  Always go for the best durability your money can buy when purchasing toys.

Remember that no one knows your child better than you do.  Go forward into the holidays with the unique wisdom God has equipped you with as their parent.  But exercise that wisdom by planning now, before the holidays.  Once you find yourself in the thick of it, you have lost a great deal of control to shape a positive outcome.

PRAY:  Father, You have entrusted me with such responsibility as a parent.  Keep me calm and clearheaded as I prepare for my child's needs over the holidays.  Increase my self-confidence in the decisions I make on behalf of my child.  Send me the support I need and make our family unified during this special time of the year.

~Barb Dittrich
Photo Image Courtesy of: FreeDigitalPhotos.net

2 comments:

  1. My child with special needs is now an adult with special needs and still living with me. I learned years ago to "scale it back"...way back, in order to maintain some of the joy of the season.
    We no longer travel over the holidays to visit family, where her differences are not accepted. Hard, but true. I had to learn that even my closest family, at the end of the day, truly doesn't get one thing about our lives. Or why I haven't "just put her in a group home", as if I was boarding my dog at a kennel. Their perceptions hurt. And one of the hardest realities for me of the holidays, is understanding that my kid is viewed by others as the "wild card"...that variable that could upset someone ELSE'S view of perfection.... and NOT as an opportunity to experience the actual grace and acceptance and spiritual growth intended by God for each of us this season.
    Has this realization of how my family views my daughter hurt me? Incredibly. Especially since her behavior is neither outlandish nor intolerable...only "different". I am hurt to the core.
    Yet my realization of how my family feels about my child is exactly why I must use my own very precious and limited time for reflection at the holidays to concentrate on one thing. FORGIVENESS. Forgiving like Christ forgave, when the betrayal is so deep it brings tears to my eyes just to acknowledge it. But FORGIVENESS, after all, was the intent and purpose of the original message...
    And so I must forgive if I am to find MY joy, this Christmas.

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    1. Thank God you know Jesus! Keep on keeping on, following his humble, forgiving example. Know that you are not alone in this alienation. You are wise to set boundaries and focus on the gift God gave you in your child. Tomorrow's post will focus on the dysfunction involving family and friends. You will surely find much to relate to there.

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