Scout Mom

I plan on posting soon about the reasons I think Scouting is a great thing for boys--especially those on the autism spectrum.  For right now I will say this has been the scouting month. 

• We had our Pinewood Derby
• We had our District dinner, which we attended because Firstborn was presented with an award.  
• We were going to go to another large scouting function recently but it was postponed because of weather.  We spent the day working on scouts instead.  We caught Acroboy up in his Wolf book.  Lawboy and Whirlwind worked on merit badges as did Firstborn to a degree (though he is an Eagle Scout, so I don't ask him to do as much as his brothers).  
• I attended a council trainer meeting and now I'm an official trainer with the council
• We had another Eagle Board recently--I was in charge of staffing it
• Blue and Gold Banquet is tonight
• Troop Fundraiser is coming up right away as well.
• I'm coaching another scout on getting his Eagle application in right away.  
• I've been recruited to train Cubmasters at a not-too-distant function
• I'm now co-chairing a merit badge day fair.  

I wouldn't be doing any of this if I wasn't passionate about scouting.  Scouting has done more for my family than I can possibly say, and it has literally meant the difference between life and death.  I'm a bit behind in laundry, but it is worth it to make sure these kids have great opportunities. 

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.

Umm, What Was That Again?

Warning--this post contains information of emergency urological kind.  If you are squeamish, stop reading and enjoy this picture of lovely flowers.  If you dare read on...

We Have An Eagle Scout!!!

Firstborn passed his Eagle Board of Review tonight!  I am so excited.  This has been such a long road for us.  It was actually his first (and very astute) Cub Scout Den Leader who noticed what a hard time Firstborn had in socializing with the other boys.  She started us on our path of discovery and understanding about autism.  

Firstborn took on a project beyond his skill set (not the least of which was making himself feel comfortable talking to adults about his project--a challenge for any kid--let alone one with Aspergers).  My Dad helped him with gain the skill set to put these chairs together for the park service.


Dear Hubby's parents are visiting, so we all celebrated with a delicious chocolate cake.  Now I just have to plan the Eagle Court of Honor....

Hope you have happy news in your day!

Torn

Torn

That's how I feel.  Torn. 

Baby Girl was evaluated in speech, gross motor and fine motor skills and in sensory/tactile sensitivities.  She qualifies for services.

She had her first evaluation with the case manager a couple of weeks ago.  We schedule another evaluation and she offered to have all them come at once.  My first reaction was, "That will overwhelm her."   I wanted to protect my baby from that.  I quickly realized that Baby Girl being overwhelmed would probably actually be a good thing for them to see.  We scheduled the evaluation.

She was, as I predicted, overwhelmed.  She shut down and turned into herself.  She closed her eyes against them several times over a short period of time.  She wouldn't complete tasks.  It was only when she had the safety net of her blanket over her head that she began to cooperate with them. 

She has a 25% speech delay.  Most of that is in receptive speech skills.  She came out as having the skills of a 12 month old.  IE--she hasn't made any progress despite our efforts. 

The occupational therapist saw a lot of the same behaviors I'm concerned with and is anxious to start working with her to see if we can help her learn to cope and deal with things in a productive manner. 

I'm relieved, happy, sad and so many emotions all at the same time.  I'm sad that my fears have been confirmed, but I am happy we've caught these things early and she can get the help she needs.  I'm relieved I will be getting support.  I've been fighting for my kids for so long I feel like I'm in a raging war and I've just received a battalion of fresh reinforcements.  I honestly get teary just thinking about it.  I'm grateful for those reinforcements. 

I am anguished for my little girl and what this might mean for her future.  It won't change who she is, but it means things will be that much tougher for her.  I have to prepare her to face the world.

I'm torn.

Response to Canadian Neighbors

You may have heard about the mom of an ASD boy, Max, who about a month ago received an anonymous and extremely hateful letter.

I was pretty shocked when I first read about it.  I was also upset, a bit angry and dismayed that someone could write something so cruel.  It also reminded me of how far we have to go in creating awareness and understanding. 

As I thought about this, my anger turned to pity.  Don't get me wrong, I don't condone the letter writer's actions, but I feel pity for her that her ignorance and fear is standing in the way of her getting to know and learn from some amazing people.  I feel sorry for her children who, if they are indeed terrified of Max, learned this attitude from their mother.  I'm sorry that their mother is teaching hate and fear instead of patience and kindness.

I am also sorry to say that while I haven't received a nasty letter telling me to euthanize my children, we have had a few run ins of our own with ignorance. 

My kids are a HUGE blessing to me.  We definitely have our struggles.  (Motivation and controlling  impulses are just two).  My kids have taught me to look below the surface though, because they are so much more than their impulsive behaviors, stimming, and inabilities to pick up on social situations.  They are more than their social gaffes.  My kids have big hearts.  They want to do good things.  They have goals and dreams and they have triumphs and disappointments and tender feelings.

My kids have suffered the indignity of getting so excited some neighborhood boys were inviting them to play basketball, only to get there and have the boys mock and tease them for their inability to catch a basketball pass.  The neighbor boys repeatedly threw the ball at my boys and laughed as it hit them and as my boys got more and more upset.  This happened repeatedly until I realized what was going on and I stepped in.

My boys have been excited to have cousins come to our side of the country, only to be told they wouldn't actually see their cousins that much.  I didn't have the heart to tell them that their female cousins don't feel comfortable around them due to a misunderstanding from the prior year.  (The boys hugged their cousins a few seconds longer than the cousins were comfortable with and the boys didn't pick up on it.  Even though it was a somewhat innocent, the "damage" was done).  We've made huge strides with my family since then, but the "non-visit" proves we still have a long way to go.

We've also recently have had family friends stop talking to us after they were in town and we met up for a day outing.  Acroboy and Whirlwind were having particularly hard time of it, and while I haven't be defriended on Facebook, they haven't responded to any messages from me, and their travel photo album left out all traces of our outing.

I've had stares at restaurants and in lines and glares.  I've had people tell me I need to control my screaming five year old better while I'm trying juggle an also screaming newborn.  I smile politely and explain we are an Autism family, and inside I'm thinking, "Thanks for your concern and for your non-existent offer to help the newborn while I deal with the five-year-old."  At the one place we caught a break, Disney World, we got glares from neurotypical families because we used a pass that allowed my children to wait in a shorter line.  Would they have really rather witnessed a complete sensory meltdown?  Even that small advantage to my kids is going away.

*******

Families like mine and Max's do not think we deserve special treatment.  We are asking for courtesy and kindness and an opportunity for our kids to grow and soar.  We hope our kids will become independent with jobs and that they marry and have the joy of a family.  We hope if there is a problem with something our child(ren), that someone will let us know and we can address it.  I can't fix the problem if I don't know there is a problem.

*******
I've since read Max's mother's response here.  Despite the hurtful letter, she has pretty much expressed the same sentiments as mine (only more eloquently).  She is polite and civil and reminds us all that we ought to be helping one another.

I hope they find the woman who wrote the letter.  I don't hope this so she has to face criminal charges of any kind. I hope this so that she can sit down face to face with Karla or other moms of ASD kids and she can learn to be unafraid.  I want her to have the opportunity to ask questions, to learn of her misconceptions and to get a glimpse into the very unique world of a child with Autism.  I want her to learn of the trials and the joys we face and how she might make things better for all of us all around. 

Honestly, when I think about it--I hope that is something that every neurotypical family does. The world would be a better place.

Am I dreaming too much? 

How Do You Guide Your Child Who Sabotaged His Brother's Scout Efforts?

Remember last week when I posted that Whirlwind was complaining about going on the scout camp out?  And that I mentioned it was an important camp out for both boys? 

Whirlwind sabotaged his brother.  I just don't know if it was intentional or not.

One of the final requirements for Lawboy to receive his Second Class rank was to go on a five mile hike using his compass and map along the way.  The troop got about a mile and a half into the hike when Whirlwind refused to go any further.  Another boy started complaining too and in the end they turned around.  (The troop did not have four leaders so two leaders could return the boys to safety and the other two keep the rest of the troop going).  The troop only hiked three of the five miles. 

When I talked to him about it, Whirlwind kept telling me he'd already passed off that requirement. 

I'm having a hard time discerning whether or not he was really that focused on his own scout goals and not anyone else's, or if it was intentional sabotage of his brother and he's taking a tact he thinks will spare him consequences.  (I don't think he likes the idea of his brother being closer to First Class than he is). 

I think that is one of the hardest parts of being a mom to an ASD kid (at least one of my ASD kids).  There are somethings I know he (Whirlwind) genuinely doesn't get.  Other times (because of things he's shown me he can accomplish) I think I'm getting played.  Usually I can tell the difference, but when we have somewhat unusual or new situations it is harder to figure out. 

I pray a lot for guidance as a mother.  I don't know how I could do it if the Lord didn't grant me inspiration from time to time.  I pray for wisdom and patience.  I know the Lord knows my children even better than I do, and He knows how I can best help them. 

I know the Lord answers my prayers.  On more than one occasion I've relayed a strategy or analogy I was inspired to try with one of my kids--only to have a counselor/therapist/professional tell me I was using a known technique to professionals without my knowing it was an "approved" technique.  I'm not saying this to toot my own horn about my instincts, but to give credit to my Father in Heaven who has helped me do these good things for my children.  By myself I wouldn't know how to do what I do.  With the Lord's help I can do anything.

So now my kids are home and I am lacking Solomon's wisdom.  I am going to be praying about how to handle this situation, because on my own I think I might just screw it up.

Trust in the Lord my friends, Trust in the Lord.

Counting our Blessings

I was talking with my friend, Michele, on the phone earlier today.  We were talking about Pinterest and how I had found a mega-board with over 2,000 Autsm pins.  Granted, some of the pins are duplicates, but it was full of wonderful ideas I hadn't necessarily encountered before like this "Transition Box". 

It has play-doh, a sensory toy, pictures, and a treat for the boy that needs it. It might be just what I need for Whirlwind to transition to scout night and for Acroboy to transition to school in the mornings.

There are brushing techniques, weighted pillows, even shoes with GPS tracking for kids who wander off.  Sensory rooms, sensory bins and recommendation upon recommendation for books to read. 

It's a little overwhelming, but mostly I feel gratitude.  I am grateful that there is an increased awareness about Autism Spectrum Disorder.  I am grateful for the technology that exists to create virtual communities of support and a place to share ideas, techniques and products (homemade or store bought) that can make parenting a child on the spectrum easier.  I am grateful to know I am not alone in this journey.  There are other moms--just like me who are trying to do right in challenging circumstances.  

My Old Nemesis Anxiety is Back

Much as was hoping to avoid anxiety it's here.

I tried to prepare for and anticipate any triggers.  I brought earplugs and an eye mask to the hospital so I could drown out extra noise.  The earplugs were just enough so I couldn't hear the baby down the hall crying, but I could still hear our bundle of joy in our room.  My sweet husband spent the first night with us and held our daughter so I could sleep.  I was able to get some sleep.

The next night I had sent my exhausted husband home to sleep in our bed.  I tried to get some sleep, but was having a very difficult time.  It was the second night "wakefulness" night.  Baby Girl just pretty much wanted to party.  Two other new moms were also having trouble sleeping.  The hospital beds were not conducive at all for "sleeping in", and they had no nursery.  Our fantastic nurses came up with a plan though.  They put all three babies in an unused room with one of them on watch at all times.  They rotated rounds, medication stops and everything and allowed us to sleep.  I got four and a half hours and I was thrilled!

The third day we came home from the hospital and it all fell apart.  I have a nursing pillow I use to position the baby as I nurse--the problem was the night time feedings.  I would get sleepy nursing the baby, but then I would "jerk" awake because I didn't want to put the baby in a dangerous position.  I kept doing this.  I would try and lay her down, but she wouldn't sleep for long before waking and wanting to nurse again. 

I also found myself drifting off to sleep in my bed, then "jerking" awake again even though I didn't have her in my arms.

The end result was I slept about an hour.

The next day was not much better.  I got an hour nap and 2 two hour stretches of sleep.  I began to have anxiety that I would never have a decent night's sleep again--even though I have faith that I would get through this like I did last time.  I had forgotten how to fall asleep.  I worried about what kind of mother I would be for my other children and how I would function when my in-laws and husband were gone. This only added to my stress level. 

I talked with my mother-in-law and she reminded me of talk I had recently heard from a modern-day apostle of Jesus Christ.  The apostle had taught us from the New Testament and pointed out that even when Jesus was at his lowest point having fasted for forty days and then having been tempted by the devil, the Savior did not turn inward, but ministered to John the Baptist by sending angels to him.  He served others even when he must have been weary and beaten down.

I realized I was wrapped in my own drama of "will I have a normal sleep schedule again?"  I realized I needed to get outside of myself and serve others.  I could serve my family--especially our new little daughter who is wholly dependent upon me, but I can also do little things to help others.  I can send a note to a sick friend, or call someone on the phone to let them know I am thinking of them.  I can make a few phone calls for another busy mom who is trying to pull together a big activity.  I can help others in small, but meaningful ways.

I also have come to the realization that this is likely NOT the last time I'll ever face anxiety--and that's okay.  Heavenly Father has helped me get through my bouts of anxiety in the past, and I know He will help me get through them now, and when I face them again in the future.  This knowledge helps me because I know I am not alone.  I can also use the experience as an opportunity to draw ever closer to my Father in Heaven and His son, Jesus Christ.  

And that my friends, is a very good thing.

Getaway with the Hubby

A few weeks ago I mentioned I might be able to go with my husband to a conference in Orlando.  We were able to work it out with someone to watch the children and we went away for a few days.  I was able to visit with a good friend and her family during the day when my husband was involved in his conference.  

My friend's husband works at Disney and so we made a visit there as well.  I finally got to see the Beauty and the Beast show and I loved it.  I also finally saw the Indiana Jones Stunt Spectacular as well and I can't wait to get my family back to see it.  I think the boys in particular will enjoy it.  

I didn't ride much while I was there since I'm pretty pregnant, but I did ride Snow White's adventure before it closes down for good, and I rode Peter Pan's Flight.

I admit to falling  asleep during Impressions de France.  I blame being pregnant.

It was some nice getaway time with DH (Dear Husband) which we haven't for eight years.  Far too long since we'd been able to go somewhere together sans children.  It was also good to visit with a good friend and visit WDW with the only child being the one in my belly.  

The kids were good for the sitter and her husband, and she gave us a new idea for handling our schedules after school.  

It was definitely a win all the way around.