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!  

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.

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?  

Milestones

Image by digitalart

This morning I came to a sad realization.  My daughter, just shy of four years old, reached a crucial childhood milestone this morning, one that every parent longs for.  In doing so, she flew right past her big brother, who is nearly twelve, and who has not yet mastered that particular skill.  I'm worried as to whether he will ever master it.

While I'm immensely proud of her, I feel guilty telling her so, especially within earshot of her brother.  I tell her good job, and that she's a big girl, and I see him wilt.  The implication, of course, being that if she is a big girl for mastering this skill, he must not be a big boy.  But I can't not praise her, because that isn't fair to her, either.

This must be a crossroads that affects every parent who has an alphabet soup child and one who is not.  The other child masters skills and asserts themselves in ways that the ABC child can't.  It's painful to think of the other milestones that will come and go with my daughter that are unlikely to happen in my son.

In another year, she will start kindergarten.  Knowing her now, she will absolutely flourish.  She has learned the letters and sounds of the alphabet and it's only a matter of time before she makes that one last connection and sees how the letters fit together to make words (I can feel it, it's so close).  Once she gets that, there will be no stopping her.  She loves being read to and I know that once she can read for herself, I won't be able to pull her nose out of a book.  Teachers are going to adore her, and she has the ability to stop and calm down when she needs to.

I see her getting good grades and being recognized with honors, something that never materialized for her brother.  She is highly social and calls everyone, even kids she just met, "friends."  She has no problem going up to other kids and asking them if they want to play.  Her big brother still has difficulties with that.  If they don't, she shrugs and walks away.  If her brother is dismissed, he melts down and cries, not understanding why.

Someday, she will learn how to drive.  Given her brother's tendency to distraction and poor judgment, I doubt he ever will.  The New York Times recently published an article discussing the special problem of learning to drive with a condition like AS or ADHD.   Some of the problems that make this especially challenging are the inflexibility and following rules to a fault that tend to occur with people on the spectrum.  E. is no different.

Someday, my daughter will likely move out and go to college.  I don't see college in E.'s future at all.  Maybe a technical school, but I'm unsure about that. I can't even imagine him at a job.  What if his boss told him no?  Would he melt down and throw a chair?  I just don't know.

This milestone is the first of many in which my daughter will soar past her older brother. I wish I could take away the pain and hurt that I see on his face when he realizes that she has passed him in some crucial way.  That's the worst of it: He knows that he is being passed but doesn't know how to change it.  I don't either.  I don't know if it even can be.

I'm Tired and I Want to Lie Down

Image by Danilo Rizzuti

Soup of the Day:  PTSD

And not my child's.  Could I be diagnosed with PTSD?

According to this article about the stress levels of mothers of kids with autism, it's highly likely.

When I read the article, I guffawed at first.  Then I thought about it some more.  I thought about the incident that took place on Monday, when I found myself calling 911 because E. was so frighteningly out of control.  He was threatening to kill himself and was fighting tooth and nail to get past me to get into the kitchen and get a knife. I have bruises covering my arm.

I stayed calm throughout the majority of the ordeal (well, as calm as possible).  Once the police arrived and took hold of the situation, I sank onto the couch.  I felt my chest began to contract, I started breathing in gasps, and my hands were shaking uncontrollably as the adrenaline that had been flooding my body took hold.  I felt sick, like I was going to throw up.  Later that night, I was hit with major digestive issues.  According to a quick web search, my tummy troubles were the result of the major adrenaline dump that had occurred earlier in the day.

This is what severe stress looks like.  While not every day is that bad, every day is a struggle.  Every day has some kind of stress attached to it.  From little things like arguing over whether E. had cleaned himself properly to bigger issues like today's, when I was visited by maintenance.  It turns out that E. had been dumping the garbage out by the side of the building instead of in the dumpster.  Why?  It's actually a farther walk to the location where the dumping was happening than it is to the dumpster.  And of course the mess was spreading as birds and scavengers went through our garbage bags.  The guy who visited me was clearly pissed about it. I'm pissed too.  There goes my stress level.

Now I'm trying to work out an appropriate consequence (I'm thinking garbage pick-up this weekend).  I know that there's going to be a fight tonight when we confront him, and I feel sick -- preemptively.

The other part of the article that spoke to me was that mothers of children with autism are interrupted at least one day out of every four, compared to other moms, who are interrupted less than one day out of ten.  It's why I left my full-time job.  How can you keep up a job when you are constantly fielding phone calls from the school or child care?  I'll tell you -- you can't.  At least today I could just stop what I was doing and answer the door.  But trying to juggle constant messages from human resources, write-ups for missed work, the dread of knowing that you have to go speak to your manager because you have to leave for the second time that week...  Constant stress.

I have no solutions.  I try to take care of myself, but some days it has to take a backseat to dealing with all of E.'s crises.  Today is one of those days.  I feel like a mess, but I have too much work to do.  Writing in the blog is my self-care for the day.  I'm hoping to meet up with a friend later, but I may have to cancel, depending on how E. handles the revelation that he's been caught red-handed.

This is my life.  And then people wonder why I'm cranky.

On Intuition

The What Ifs can be scary sometimes.
Image by digitalart

Last week my daughter spiked a fever of 105.  I knew she was running a fever, but I didn't realize how high it was.  Every time I approached her with the thermometer, she would fight me like a little wildcat.  By early afternoon, however, she was complaining that her ears were hurting.  She's always been prone to ear infections, and, in fact, had tubes placed when she was just a year old.

I called the pediatrician, but they were unable to see us right away.  My husband and I debated whether we should take her to the Urgent Care to get her checked out.  In the meantime, she went into her room and covered herself in her heavy comforter and fell asleep.  We stood looking at her, trying to decide what to do.  "Take her in," the little voice in my heart said.  "She's been acting listless all day, and she probably has an ear infection.  Take her in now, and you won't have to deal with the ER later."  Alright, alright, I said.

I felt terribly guilty as I extricated her from the blankets, and I couldn't help noticing again how very warm she was.  We got to the Urgent Care and had to wait a bit.  The place was packed.  She leaned against her daddy and looked up at me with bleary eyes.  She looked incredibly pale and fragile.

When we were seen, the nurse performed all the usual checks: height, weight (she's getting so big!), blood pressure.  Then she ran the thermometer over her forehead.  I caught a glimpse of the number on it as she pulled it away.  I did a double take and my jaw dropped.  105.1!  "Oh my god," I said.  "Is that thing accurate?"  The nurse tried it again and got the same result.

The fever finally came down with a good dose of  ibupofen and acetaminophen and a little time.  But my mind keeps going back to that moment where she had been lying in her bed, wrapped up in that heavy comforter. That awful question of what if? dangles.  What if I had just let her lie there?  How high would her fever have gone without intervention?  What effect would the comforter have had?

I brought up the question to some friends the other night.  "Her fever would have broke and she would be fine," my friend said.  "Yeah, but what if it didn't?" I asked.  "But it doesn't matter," she replied.  "You followed your intuition."

That same intuition was what drove me for so many years, trying to figure out what was going on with my son.  I tell the full story here of our attempts to get E. properly diagnosed.  Doctor after doctor, therapist after therapist. Even once we had our diagnosis, we continued working until we felt like we had the best team possible.  Why?

Intuition told me to.  "Something is wrong," the little voice said.  "This isn't typical."  So I continued to search for answers to the questions.  And I always will.

It's Here! It's Here!

Today I was thrilled to receive a package in the mail containing my contributor copies of Autism Asperger's Digest.  As a writer, this is one of those major moments:  my first print story.

The article is "Scouting with Asperger's."  It tells the story of how E. got involved with Scouts and what a major confidence builder it has been for him.  If your child is interested, consider Scouting.  The article details why Scouting is such an ideal activity for kids on the spectrum.  For more details... you'll have to buy the magazine!

I have to tell you though.  Opening the magazine, seeing my name, reading through my words... this is a huge moment.  I never dreamed I would find myself writing in the niche, for a number of reasons.

My life often feels like it revolves around Asperger's.  I remember reading the book House Rules by Jodi Picoult.  The character of the mother stated that she felt like she herself sometimes had Asperger's because of how quickly it becomes all you can see and talk about.  I know that feeling... well.  Since Asperger's was the reason that I quit the "9-5 real job," I felt some resentment toward it.  I also doubted that I had much to contribute to the conversation that had started long before I arrived on the scene.

Turns out that I do have something to contribute after all.  Yesterday I received one of the most valuable compliments ever when the editor of the magazine, a woman who has read pretty much everything that's ever been written about Asperger's, emailed me to tell me that the article I had just submitted (a piece on advocacy that will run in the November issue) had actually helped her to have the best IEP meeting she had ever had.

This is exactly what every writer hope for when we apply fingers to keyboard.  That our words will somehow make a difference in the lives of those who read them.  That my words could make a difference in this woman's life is a profound moment.  I can't wait for them to be read by others across the nation.  That is why I am here.

Although when I began to write I had envisioned topics that were the equivalent of a slinky black cocktail dress, I find that this niche is really the comfy sweats that I'd much rather be wearing.  The cocktail dress wouldn't have fit right, and frankly, I probably would have looked pretty silly and out of place in the dress.  The sweats rock and always fit right, no matter how frazzled I feel.