Health Concerns for Me (And Being More Proactive)

I saw my primary care doctor recently for an infection I had.  I have a tendency to get this type of infection. She looked at my lab work and we talked for a bit.  I've previously been anemic (usually during a pregnancy), I've had thinning hair since my last baby was born, an my cheeks are redder than usual (I had an aesthetician tell me she thought it looked like early rosacea, though it admittedly looks a bit butterfly shaped).  There are 11 diagnosis criteria for Lupus, and you must have four of them to be considered as having Lupus.  These things plus my reoccurring infections and family history, she decided to check my ANA levels.

This week I got a phone message asking me to call back at my earliest convenience and the hours they are in the office.  This had me worried.  I've given them permission to leave messages on my home phone.  Usually when my blood work turns out okay, I get a message to that effect.  I got the message after the office had closed, so I had several hours to ponder the "call us back at your earliest convenience."

The tone of the nurses voice, and the request to call back instead of leaving a "everything is fine" message had my husband and I checking out the Internet for things I might do with my diet and activities to support a healthy lifestyle with Lupus.

It turns out my tests were in the normal range.

I'm immensely relieved at this point.  My family history is not the greatest, and I realize that even without a diagnosis, I need to take better care of myself, so I can take care of my family.  I'm glad my doctor is thorough and careful and wants to make sure she knows exactly how my health is. 

So today I will encourage all who come across this blog to take a look at your own health.  Do you have baseline levels for cholesterol, triglycerides and blood pressure?  If you are a woman do you do your breast self-exam each month?  Do you get your yearly mammogram?  Are you getting regular exercise?  (I've recently let my exercise regimen slip and I'm feeling it).  Do you eat healthy (and preferably non-starchy) vegetables?  Do you get adequate sleep? 

I admittedly fall short in some of these areas, but I do already have my mammogram scheduled in the coming months.  Let's start our New Year's Resolution now and try and be a bit healthier through the holidays. 

Take care.

Song of My Heart

Okay, this may sound strange, but I was in the car the other day and listening to mp3's.  (That by itself is not really strange).  I have a love of big orchestral scores and in particular soundtracks.  I was listening to Steve Jablonsky's "Arrival to Earth" from the first Transformers movie.  What was strange was that I realized in a way it reflected my feelings about our family's autism journey.

The music starts off low and quiet and a bit dark.  Like something is creeping up on you and you're not quite sure what is going on.  With Firstborn things crept up on us.  We knew he had some sensitivities, but being first-time parents, we didn't realize they were red flags.  We didn't know enough to start early interventions.  We knew Whirlwind had a short fuse and seemed a bit behind his peers emotionally, but we had no answers. 

The strings begin repeating their theme a bit frenetically.  We start learning about Firstborn's diagnosis and putting all the pieces in place.  It was a massive learning curve and really intimidating.  We hid his diagnosis from many people--including him for a long time.  Whirlwind and Lawboy were diagnosed with ADHD and we were trying to figure out the best ways to help them.   We finally find something that works for impulse control only to find that Whirlwind, and later Lawboy, are also on the spectrum and it was hidden by his ADHD.  Acroboy shows signs of being on the spectrum and we finally get evaluations and answers.

The strings change into the main theme and the main work begins.  We are working in earnest on social stories, conversations, food therapies, counseling, support groups and we no longer hide.

The music builds and voices join in.  We find we have many people on our team, though we are not opposition free.

The music continues to swell and rise.  I have hope my children, despite their disabilities, will thrive and succeed.  I have seen so much growth in them.  I am so blessed they do as well as they do.  I recently met my friend's sister, who has a 17 year-old non-verbal son.  I am lucky and I know it.

The music goes quiet with voices singing in a Gregorian-like harmony--a moment of stillness and reflection.  Then come the drums--almost like a warcall.  I will fight for my kids.  I will keep fighting battles and equipping them the best I can to fight their own as well.

The music swells and presses forward.  We will press forward and we will not give up.  Autism may be in my family, but it is not all that my family is.  My kids, my husband and my faith are my greatest blessings from God.  They each have the potential to great things in their own way and I will do everything in my power to help them achieve their goals. 

UPDATED: Review of DAS at Walt Disney World

It's November 2015, and a few changes have been made to the DAS system.  As most people know, Disney World has been moving over to a system using Magic Bands.  At the time I wrote this in November 2013, there were still FastPass kiosks where paper FastPasses were handed out.  Now a large portion what you do in the parks (from tickets, to dining, to paying for merchandise, room keys, and FastPass+ admission) is done with Magic Bands.  (I'm not going to post a how to on Magic Bands at this time).  Now even the DAS is controlled via Magic Band.  I'll explain how this works. The old post is in black.  Outdated information has been crossed out in PURPLE, new information has been added in RED. 

We just made our most Knowing we were heading to Disney, I have to admit I was very nervous when I heard about changes being made to the Guest Assistance Card.  I understand why they felt compelled to make said changes (I'm sad that so many people ruined a great thing for my kids who don't get many breaks), but understanding why did little to relieve the anxiety I had for how this would affect my kids.

I confess I made more than a few phone calls to Disney to get as much information as possible about the new DAS system which replaced the old GAC on October 9, 2013. The cast members were courteous and as helpful as they could be though I couldn't get definitive answers about how they would handle my unusual situation with four children being on the spectrum and there being a total of eight of us . I was directed to pretty comprehensive information on their website.   I'm posting links, but in case you can't get to them I'll tell you how to navigate there.  Go to DisneyWorld.com.  In the right hand corner you'll see a HELP drop down menu.  While holding down your left mouse button, select the "Guests with Disabilities." This will bring up a new page.  On the disability page, select, "Guests with Cognitive Disabilities."  There are helpful suggestions there regarding stroller rentals, rider switch, and break areas.  There is a pdf guide you can download with information specific to each park.  There is also a link to a page dedicated to the Disability Access Service card. 

How it works:

You go to Guest Relations in any park and talk to a cast member.  Your whole party must be with you.  Based upon your needs, you will be issued a DAS on your Magic Band.  They will take a picture of the child who needs the DAS, They will then scan his/her band as the primary DAS party.  Each person in the party will then have his/her Magic Band scanned as well and attached to the DAS.  We had no issues with all eight of us being attached to one band.    

issue it for the number of people in your party and you will sign the back saying you understand the rules and will not abuse it.  It's good for up to 14 days depending on your tickets.  (Multi-day tickets are valid up to 14 days after the first day is used, so this makes sense). 

You can see our Photoshopped DAS to the right.  

Autism Parenting is Lonely

There is just no other way to say it.

Parenting (in general) can be hard enough.  Parenting special needs children can present a whole new slew of challenges.  You have to be creative in a million different ways, develop and use more patience than you ever thought you were capable of, become an expert in therapies you never really heard of before diagnosis and face challenges and scrutiny when you go out.  We prepare the kids every time before we go out to a restaurant with the rules of conduct. The older ones mostly get it, but Acroboy still needs to be coached EVERY SINGLE TIME.  And I'm lucky because I can take them to restaurants and public places, because others I know are not so lucky.  I'll stop there for now.

It's difficult for friends of neurotypical kids to understand all this.  After years of working with my family (and tremendous growth on my kids' part) my childhood family are beginning to really see the awesomeness of my kids, and understand the challenges of how we've gotten to where we are.  

As a mom to special needs children, it hurts when your child(ren) don't get invited to parties because of their mannerisms and quirks.  It also hurts when YOU don't get invited to things because of your children and/or the schedule you have for your child(ren)'s sake.

Letter to My Nieces and Nephews on Autism

This summer we were getting ready for a family reunion.  It had been ten years since the entire family was all together at once.  It was three years since my kids had seen all of their cousins. The last time we had an unfortunate incident with an unfiltered comment, a hug that lasted a second or two too long and an attempt to break into a conversation by hovering and following cousins around.  That story will be found in another post.

We all wanted this family reunion to be great.  It was to celebrate my parents' 50th wedding anniversary and I in particular was nervous about how my kids would be perceived.  I thought about discussing things with my sisters to pass on to my nieces and nephews, but then I though something might be lost in the translation.  I decided to write the following letter and prepare a questionnaire to get them thinking about some possible talking points.

The letter:

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Dear nieces and nephews,

I wanted to write a letter to you before we all gather for our family reunion.  We are looking forward to seeing each of you in just a couple of weeks.  I realize because we’ve lived away for so much of your lives, you don’t know your Munchkin cousins as well.  I hope the questionnaires I prepared will give you a jumping off point for conversations with each other.  Two of your cousins attend a magnet school for the arts in our county.  Another attends the STEM (science, technology, engineering and math) school.  He currently wants to be a bio-engineer.  They have played in county orchestras, participated in Math Counts, and robotics clubs.  (It’s up to you to figure out which is which).  

The older boys are involved in scouting.  Firstborn has his Eagle Scout rank and one bronze palm.  Whirlwind needs two more merit badges and his project to become an Eagle Scout.  Lawboy needs one more (at this time) merit badge for Life Rank and needs a project.  Princess Ballerina loves dance.  She has been in the Nutcracker as well as the spring ballet, though this year she chose to not participate as the rehearsal schedule interfered with church.  Acroboy has just started Cub Scouts and often forgets to put on his glasses.  BabyGirl is our youngest and a bit mischievous, and Firstborn, Whirlwind, Lawboy and Acroboy are all extremely high-functioning on the autism spectrum.  

We’ve tried very hard to not let this define them.  There are certain things that come with being on the autism spectrum though that are noticeable.  I am hoping by writing you this letter, it will increase your understanding of your cousins and encourage you to learn and do more in regards to autism.  

Sometimes the filter that stops us from talking at inappropriate times, or saying something that might seem rude doesn’t work.  My boys have worked really hard to learn the social rules that seem intuitive to most people, though sometimes they might blurt out or say something rude or unsuitable for the situation.  Most of the time you should know that they are trying and ignore it if it happens.  If it really bothers you, you can talk to them directly, or if you are uncomfortable doing that, to me.  

Finding good ways to enter a conversation is trickier for someone on the autism spectrum.  If you see them hover near you, or thinking they are eavesdropping chances are one of two things is happening.  1) They are trying to work up the courage to talk to you.  Conversations with people they don’t know as well can be a bit intimidating.  It takes more courage for them than the average person.  2) They are hoping to hear something you say they can pick up on and enter the conversation with.  For instance you might start talking about the latest summer movie blockbuster and they can give their opinion on it if they’ve seen it.  If you see them hovering near you, do your best to draw them into the conversation.  They would like to know you and you can help by trying to get to know them.  

Once they are in a conversation with you, they might start bringing that conversation back to a favorite topic of theirs.  Minecraft, Roblox, Mario Brothers, are just a couple of possibilities.  Going back to a favorite topic is a method they use to safely navigate conversations.  If it is familiar, there is less chance they’ll have their “filters” fail and have awkward moments in their conversation.  You can find ways to help them branch into other areas.  An example might be Acroboy talking about Roblox.  You can go from Roblox to other games on the computer to other games in general, and then games in gym, and finally what types of things does he do for physical activity?  

Sometimes when you are in conversation with the boys, you may notice them standing a bit closer than other people do.  The filters that tell most of us appropriate distances to stand from someone can misfire in those with autism spectrum.  Paradoxically, they might notice you are in “their” space while they don’t notice themselves infringing upon yours.  We have a code phrase, “watch your bubble”, to remind the boys that they need to watch their spacing from others.  

Lastly, sometimes they might not pick up on facial expressions or subtle body language.  If there is an issue, let’s address it directly and succinctly.  Using the above example, you might say, “Lawboy, your bubble is invading mine.”  Making faces or using body language in hopes they will get the hint doesn’t work nearly as well as addressing things head on.  If Whirlwind says something a bit odd, ask him, “What did you mean by that?” or “Is that the phrasing you really wanted to use?”  Or simply, “Could you not say things like that?”  We all appreciate directness and patience.  

These boys are awesome kids.  I couldn’t be more proud to be their mother.  They have such huge hearts and generous, courageous spirits.  I have learned so much from them.  I hope you will too.

Lastly, they’d really like to know more about you too , so please take time to look at the questionnaire I sent your moms.  Feel free to add whatever information you'd like others to know.  I love you all and can't wait to see you again.

Love, 

Aunt "Mom to My Group of Munchkins"

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The Questionnaire:

Family Reunion Questions for Teens:

Something you might not know about me:

__________________________________________________________________________________

My favorite book is ____________________________________________

And here’s why:_______________________________________________________________________

The last movie I saw was: ____________________________________________ I thought it was_____________________________________

My favorite subject in school is:_____________________________________________________

My best subject in school is:_____________________________________________________

My favorite Disney character is:__________________________________________________________

My favorite food is:____________________________________________________________________

Finish these sentences:

My thoughts on Harry Potter are:_________________________________________________________

Chocolate is___________________________________________________________________________

The best kind of music in the world is:____________________________________________________

The best band/singer is:________________________________________________________________

If I could pick from flying or invisibility as a super power, I would pick ___________________ because:

____________________________________________________________________________________

I’m really good at:___________________________________________________________________

I have to work at:____________________________________________________________________

My extracurricular activities at school and home include:______________________________________

____________________________________________________________________________________

____________________________________________________________________________________

I have/do not have an after school job.  It is at_______________________________________________

My dream job would be:_________________________________________________________________

I plan on studying to be (career) :__________________________________________________________

Misunderstandings

It's taken me a long while to write about this because of how sensitive the feelings of those involved are.

Let's first visit the day we found out that not only was Acroboy on the Autism spectrum, but that he has ADHD as well.  I really wasn't surprised by the dual-diagnosis, but it still hit me hard.  I knew with the diagnosis just how hard life could be for Acroboy.  Add to that pregnancy hormones, and it was a pretty emotional day.  Even though I expected the diagnosis, it feels like a mourning for the child that will never be.

I was driving home from our favorite Autism center, and I got a phone call from my sister (J).  She told me that I should not have my mother come out to help with the new baby because, "to be blunt, your kids overwhelm her."

Wow.

Ouch.

Now, my mom has had lots of health problems and I was already trying to figure out an alternative.  (She had called me up an announced she was coming out to help a week or so prior).  I have steep stairs in my house and my mom has knee problems as well as Lupus, and stress makes her Lupus flare up.  I didn't think this was necessarily a good combination.

Camp Half Blood Here We Come (Well, the Grand Canyon and Hoover Dam at Least)

So one of the many preparations we took for our family vacation and reunion for my parent's 50th anniversary was to make more family shirts.  The older boys are HUGE Percy Jackson fans--and two of them have ADHD, so they like to joke they are just like Percy in some ways.  (If you haven't checked out any of Rick Riordan's books, I highly recommend you do).

In any case, Whirlwind suggested that since our itinerary included seeing both the Grand Canyon and Hoover Dam (sites where a couple of events in the books take place), we make Camp Half Blood t-shirts.  Camp Half Blood is where Percy Jackson and all the other demi-gods go each summer to escape the monsters from mythology.  They learn to fight, use their talents and, more often than not, go on quests.  Their t-shirts are orange with a Pegasus and the name Camp Half Blood on them.

I found the graphic online and converted it into an SVG file so I could cut it using my Silhouette Cameo.  I used the freezer paper technique to create the stencil.  I used Safety Orange shirts--which had the added benefit of making my family really easy to spot anyplace we were at.  Having had a child wander off before, I also know it's really easy to say to employees, "My child is wearing a shirt exactly like mine," and then everyone knows what to look for. 

Then I used a combination of black Sharpie and black paint to fill in the blank parts of the stencil.  You must make sure you have something between layers of shirt to protect the backside from getting colored/painted on.

Finished product (against record low levels of the Hoover Dam).  

Music Man

Lawboy has applied to the performing arts high school Firstborn attends, AND BEEN ACCEPTED!  The competition was tough.  Several violinists auditioned and only four were accepted.  I am bursting at the seems with pride in his accomplishments.  I was hoping he would get in--my dad (who plays six instruments and sings really well) says he thinks Lawboy has a lot of natural musical talent.  I think this will be an excellent place for him to hone his talent and find more discipline in it. 

He loves robotics and seriously considered applying to Whirlwind's STEM high school.  He weighed this decision heavily for weeks, and prayed about his course of action.

In the end, he applied to the arts school first and decided to put his efforts into his audition pieces.

I think this will be a good move for him on multiple fronts.  It's a smaller school with lots of quirky, but friendly kids.  I think he and his sense of humor will fit right in.  There is an additional benefit that this year I have seen a pronounced decrease in the amount of fighting between all of my boys, and between Whirlwind and Acroboy in particular.  With Whirlwind having a "school of his own",  it seems to give him a sense of ownership, uniqueness (from his brothers) and it promotes his love of math and science.  With Lawboy going to a different high school I have high hopes their relationship will continue to improve because they won't be figuratively stepping on each others toes. 

I have high hope for my boys and their futures.  

Practice Pays Off

I am proud of my boys.  We have a county wide youth orchestra once a year.  Everyone auditions with the same selected pieces and then they are placed in chairs. Firstborn auditioned and for the first time in several years, he is first chair! I am so happy for him.  Whirlwind really doesn't like to practice, but wanted to continue orchestra this year.  We had him audition as well, and though he felt some of the pieces were above his skill level, he  was placed above his expectations.  I am waiting to hear how Lawboy's audition went.  He hasn't really been focussing on preparing his All-County pieces as much as his audition pieces for the same school Firstborn goes to.

Update:  Lawboy got third chair (first violin) for the Middle School Orchestra!  I am so proud of my boys! 

Tracking Paperwork for Special Needs Kids--My Autism Binder

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• Hello!
• With six children, four of whom are on the autism spectrum and my toddler receiving services for speech and sensory issues, I need to be an organized mom.  Admittedly, some areas of my life are better organized than others.  Today I want to address something I've never really seen talked about--the sheer amounts of paperwork that comes with a special needs child and how to organize it.
• Whether you are like me with one or more kids with special needs and you've been doing this for a while, or a mother with a newly diagnosed child, you need a way to keep track of the appointments, progress reports, evaluations and 504, IEP and IFSP paperwork.  If you have a newly diagnosed child, I want to especially welcome you.  Take a deep breath and know that it will be okay because YOU ARE NOT ALONE.  You need to know this because I made so many missteps when we were first dealing with a new diagnosis.  The biggest one was not reaching out and sharing with others.