Thursday, May 31, 2012

Protecting our Alphabet Soup Kids

How prepared is your family for an emergency?
Image by digitalart

Last night I had the opportunity to attend a presentation given by SEPAC, a local group dedicated to educating the community and providing solutions for special needs families.  The presentation was on keeping our kids safe in a variety of situations.

One of the presenters was Shari Badger, the High Risk Population Coordinator for the Pierce County Department of Emergency Management.  Her primary job is to find solutions for people with special needs in times of crisis.

How prepared is your family in case of a disaster?

Emergency shelters often aren't well-equipped for people with special needs, whatever those needs may be.  A child with autism will not react well to the disruption in routine that evacuation to a shelter creates, and a child with a sensory processing disorder may not be able to handle the stress and noise.  Ideally, your family should be able to be prepared to go for at least three days without power and water.

Families of alphabet soup kids will need to take additional steps to prepare for emergencies.  Here in the Pacific Northwest, we aren't prone to tornadoes and hurricanes, but we still get major storms that can knock out power for days and even weeks.  We are also in prime earthquake territory, in the shadow of volcanoes, and many areas are prone to major flooding.  Think about what kind of emergencies are likely in your area and neighborhood when you are making your plans.

Some of the preparations you should be making:

  • Have a "go kit."  This kit should include at least three days worth of the medications your child needs as well as documents explaining his or her condition and needs.  
  • Create a small first-aid kit and keep it in a safe place; a fanny pack is perfect for this.  Try modelling these kits after the "10 Essentials" used by the Boy Scouts.
  • Print up the evacuation document provided by the National Fire Protection Association.  Fill it out and practice walking through an evacuation.  Practice over and over until your child feels comfortable with the scenario.
  • Make sure that your friends and neighbors are aware of your evacuation plans.  Also, you should make sure that your neighbors are also prepared for an emergency.  After all, you may be the first person they come to! 
  • Create a neighborhood emergency team.  Walk through the neighborhood together and make sure everyone knows where the gas lines, fire hydrants, and water shut-off valves are.  
  • Contact your child's school and find out what the emergency plan is. Keep your emergency contacts list up to date and create a "go kit" for your child to keep at school as well.  Restock it if your child's medications change or at least annually.
Creating a plan and rehearsing it with your child empowers him or her to become part of the solution in case of an emergency.  Keep your alphabet soup child from becoming a victim!  

Tuesday, May 29, 2012

Please Take Our Poll!

Image by Danilo Rizzuti

We are working hard behind the scenes to expand and increase the scope of Alphabet Soup Child. Your Alphabet Soup bloggers are Amelia and Julia. As we grow, we are hoping to hear from guest posters who would like to talk about their Alphabet Soup experiences. One way you can help is to answer the quick poll to the right.

Which alphabet soup diagnoses are affecting your family? You can answer with more than one, of course. If your answer is other, please leave us a message to tell us what you are coping with. You always have the option of answering anonymously.

One of our major goals is to make this a welcoming community where we can freely discuss what is happening in our lives, encourage, and support each other without the fear of judgment. We have a lot in common, and there is strength in numbers.

Please let us know if you are interested in guest posting, and feel free to ask questions at any time.

Wednesday, May 9, 2012

The Care of Alphabet Soup Parents

Don't give up on us, okay?
Image by tungphoto

One of the most difficult aspects of being the parent of an alphabet soup child is handling the inevitable isolation and the loss of those moments that define you as being something other than an alphabet soup parent.  Friends may recede as we no longer have the finances to support an active social life, let alone the time.  We may have to give up our jobs if we cannot find a way to work them around our schedule that has become filled with appointments and unscheduled interruptions.  It begins to feel like our lives are fully consumed by our kids and their needs.

Often, these changes can cause misunderstandings and hurt feelings among your friends and family.  Why do you no longer want to spend time together?  What's with all the sudden cancellations and dropped plans?  How come you aren't seen at family gatherings?

It can be difficult to explain, but I will try.

1.  Finding a babysitter has become nearly impossible.  We are trying to be polite and not impose.  We know that not every gathering is "family friendly," and we are attempting to respect that.
2.  Because one parent is no longer working, and thanks to mounting medical costs, our financial situation may no longer allow for "frivolous" activities.  We can't justify a dinner out when the power bill is due.
3.  Even family friendly events may pose a challenge.  Our children are often unpredictable.  We don't know when an outburst is coming, or whether it's going to be a shutdown or a meltdown.  Or we know perfectly well that an outing is likely to be overstimulating for our child and a meltdown is likely.  Rather than expose everyone to that situation, we simply stay at home.  
4.  We may simply be exhausted.  We are tired and stressed out and know that we are unlikely to be pleasant to be around.

You may feel angry about the situation or even slighted.  You might even think of your friend as rude or uncaring.  Please remember:  We have a lot on our plates.  We are trying to do the best thing for our family and for our child.

Here's how you can help:

  • Read up on the situation your friend is coping with.  Understanding what they're going through is the first step toward accepting.  One excellent selection is How Can I Help?  A Friend's and Relative's Guide to Supporting the Family with Autism by Ann Palmer.  
  • Check in with them once in a while.  Silence makes coping more difficult.  Your friend may feel abandoned and will be less likely to come out at all.
  • Talk openly about the situation. It's not a taboo topic, and your friend will feel better knowing there is someone who will listen without judgment.  
  • If you know the child and feel competent doing so, offer to help with respite care.  Don't be vague -- offer a specific time and date.  
  • Continue to extend invitations.  Even if your friend can't make it, the invitation is appreciated.  Be understanding of last minute cancellations.  Unpredictability is simply a part of life for alphabet soup parents.
Alphabet soup parents, what would you add to this list?  Friends and family of alphabet soup parents, what are your questions?