Sunday, October 23, 2011

Get In Line

I had to copy and share the article below.  It is how I feel now.  My main complaint, if I have a right to complain, is that I am so tired.  Last week I slept one day until 12:30 in the afternoon.  I caught up and felt great for a day or two and now....we are back to the 2 a.m. sit-athons.  Last night, or this morning depending on how you look at it, he woke me up to tell me that he wants it to be morning.  Sleep....blessed, sweet and glorious sleep.  I never thought I would appreciate it so much!!!!

He has also been back to his aggressive self, full of anxiety and demands.  He is doing great in school so I have to look to these small consolations and thank God for the steps we have made regardless of how small.  Our next big adventure is on the 30th.  We get to go spend the evening with the Husker athletes.  ALL OF THEM!  He does not know yet as he would drive me crazy about it.  I can't wait to see his excitement!  I also can't wait to hear him tell Bo Pellini how much he LOVES the LSU Tigers!!!! 

Now, being that I have no other words tonight I share with you how us autism moms REALLY feel.  I do not know who to credit with this but I did clean it up a little.  If anyone knows who wrote it please let me know so they can give the proper credit! 


Learn to fear us, because autism moms are not to be trifled with.

 Top Five Reasons You Should Never Piss Off an Autism Mom

Five.  We’re Already on the Defensive

What?  You think you’re the first person to think I’m a bad mother? Get in line.  People have been assuming I’m a bad mother for the last five years.  I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid?  No sh**, Sherlock – this panel of physicians and psychologists agrees with you.  Tell us something we don’t know.  Have something new and clever to add?  No?  NO?  I didn’t think so…
In other words, we have experience with people like you.

Four.  We Are Not Socially Well-Adjusted

We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society.  We have cut ties and discarded the family and friends who couldn’t handle our situation.  We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate.  We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words.  We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap?  Yes.  Good choice.

Three. We Know How to Fight

Autism moms know how to fight because we practice. We fight all day long.  We fight with doctors about treatment, and then we fight with insurance companies to get it paid for.  We fight with the state over services and we fight with schools about our IEPs.  We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing.  We fight with our children to make them keep their pants on in public.   Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?

Two.  We’re Already Angry

Autism moms carry huge amounts of unprocessed rage just below the surface.  We’re mad at God or the universe or fate or whatever it is out there that gave our children autism.  We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children.  We are angry about the loss of the child we were supposed to have, and we never truly stop mourning.  We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did.  We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place.  We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?

One. We’re Sleep Deprived

Some of us haven’t had a good night’s sleep in years.  Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted.  We’re muddled and short-tempered and irrational and crazy.  Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you.  Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom.

Sunday, October 9, 2011

A Walk For Joseph


Today was one of those days that I will always remember.  One of those days that marks the beginning of something new.  One of those days that defines what life is about and what family and friends truly mean.  First a few thanks.  I want to personally thank each and every person that came out to walk with us today.  Bishop Neumann TORCH group and St. John Bosco Youth Group, you were awesome!  The future of these children will be in your hands.  Your love and support mean more than you can imagine!  Mike, you led the team and held the sign....and I owe you a meal!  Rachel, you are always there.  What a true friend!!!! Thanks!  Eleni, I could not have survived the day without your watching over the kids and entertaining them.  You were GREAT!  And most importantly, my family.  All my children were there to support one of their own.  You kids are the greatest!  I felt the strength in our family and your devotion to your little brother.  I know that one day he will be in good hands.  I love you all so much!!!!!



Jeffrey took the juggling pins from the clown and started his own show. 

And also to our generous family and friends that donated to our team, you give us hope that we will find an answer.  Thank you!  You put our team in the Grand Club earning $1,400.00 by the end of today.  Your generosity has moved me to tears on several occasions during the fundraising.  You have restored in me a belief that there is still kindness in this world.  Please be assured of our prayers.
The Matrix meets Star Wars!  Go St. John Bosco youth group!  We love ya'll!!!

Joseph, the force is with you!

This was one of the biggest mascots.  Everyone wanted their picture with the Stormtroppers. 
Some of us should have just stayed out of the pictures!  Oh, well....I had fun!

The weather held out and it was a very nice day.  I don't know how many turned out but there were many.  One of the most amazing things to witness were the number of young people out there raising money, working stands, serving food, and playing with these kids. 
Playing baseball with the Husker baseball and softball teams.

Getting points from one of the coaches. 

I, along with two other ladies, got recognized for being in the Grand Club.  That was for individually raising over $1,000 in donations!  This is, again, thanks to all of you for answering my constant pleas!   And then Mattie sang her song that she wrote for Joseph.  It was beautiful!  It has been posted on youtube by one of her friends.  It was recorded on a cell phone so it's not the greatest sound, however, she was offered a recording session!  So we will get it recorded and offer it at different autism venues.  Here is the youtube clip:



My awesome, sweet, beautiful and talented daughter!!!




Leading Team Camo Angel is the Camo Angel himself!

No words can say enough about the Bishop Neumann TORCH group!
You are some amazing kids!!!!!!

I feel such a comfort tonight as I watch Joseph in sensory overload.  I am wondering how many parents there today with our special children are going through the same thing.  Just knowing that we are not alone is HUGE!  I feel such a strong friendship with all these parents!  It has been an incredible journey.  I look forward to next year. 

That said, I will end with the words of my daughter's song, "Mommy and daddy could never make you see what you mean to them, what you mean to me."  We love you, Joseph!!!!  And we loved the sign you made...."Autism Rocks!"  You rock, buddy!  You are a great kid with lots and lots of friends who love you so much.  You are a blessing to all of us!  

Thursday, October 6, 2011

T.O.R.C.H.


In order to understand what an amazing group of kids we spoke to last night I want to inform you what TORCH stands for.  It is Turning toward Others and Reaching out with Christian Help.  My high school junior has been a member of this group for the past few years.  They are known for their outstanding work with the Pro-Life movement. 

The guest speaker was Jessica, an 18 year old student at Villa Marie, the special education school that the Marian sisters run.  Jessica has autism and gives a power point talk on what it is like to have this disability.  She was amazing! 

Joseph, however, did what I thought he would do but surprised me at the same time.  By the time we got to the school he was very negative, demanding, loud and grumpy.  I knew he was simply overwhelmed with the unknown.  His main mission as soon as we arrived was eating.  He demanded to eat or he was leaving.  Sister hurried things along and Joseph was first in line.  He ate a lot and quickly.  I should have seen this as part of his sensory overload but did not catch it in time as I was working on my speech.  Soon he was sick with a tummy ache and decided he would just go to sleep.  And he did!  Knocked out cold!

Then Sister called his name and asked if he had anything to say.  To my shock and amazement he said yes!  He walked to the front, smiled for what seemed an eternity, waved to everyone and said "hi, my name is Joseph!"  That was it!  That was his big moment!!!!!!
Talking to the group with, of course, no eye contact.


My heart, of course, exploded with pride and joy!  Sister guided him along from that moment on with the help of Joe's big sister, Mattie.  She asked him how old he was on this night and he held up 10 fingers.  She asked him if he liked sports and he nodded his head.  I thought that was it and he would not talk again. But then she asked THE question!  "Joseph, what is your favorite movie?"  And he said, "TRANSFORMERS!" with a huge grin.  And one of the boys hollered "oh yea!"  When Sister asked if there were any questions for Joseph hands went up.  One boy asked what sports he liked he said football.  Another one asked where he went to school. 
A proud and loving sister....

Mattie was beside him the whole time.


And then.....they rolled out a cake and sang "Happy Birthday" to him and presented him with $10 to buy a Transformer toy!
His reaction to singing Happy Birthday to him!


Mattie sang her song "Camouflage Angel" that she wrote for Joseph and will be singing this Sunday at the walk.  There were many tears in the room.  After we all prayed together (and several of the prayers were regarding autistic children, their families and teachers, and for our family and Joseph) we prepared to leave.  I looked over and Joseph was surrounded my boys looking at his Transformer toys he had brought with him.  I'm sharing this story for two reasons.

First to show how far Joseph has come.  There was a day when he would talk to no one!  I could not even get him to be a sheep in the background of a Christmas play at church.  And here he was running to the front of this big group and saying hello!  Praise be to God!

Secondly, to praise an amazing group of young people that treated both Jessica and Joseph with respect.  How many high school kids do you find sitting in a school cafeteria listening to two autistic children talk about their world and then praying for and supporting them?  These kids are amazing!  They will be dressing in camo on Sunday and taking a bus down to the walk and walking in honor of our Joseph.  However, all those dealing with autism.....adults, children, families, teachers, schools.....have been assured of prayers from this outstanding group of youth!  Thank you Bishop Neumann High School TORCH group.  I am so proud to be a parent supporter!  God bless you all!!!

Wednesday, October 5, 2011

Happy Birthday!

I can't believe he is 10 years old today!  What a decade it has been!!!!  There are enough stories to write a mini-series on his short life.  I always find myself reflecting back on their birth on their birthdays!  I hesitate in doing so with Joseph.  Do I still have some hidden guilt on the way I handled his early birth and my bad health?  Do I still wish things had turned out different?  Or do I just wish I had known then how it would be today?  I don't know the answer but I find it hard nonetheless.



We celebrated his birthday a day early as I am giving a talk tonight regarding the walk this weekend.  He was invited by the T.O.R.C.H. group at Bishop Neumann to come with me so the kids could meet the little guy they are going to sponsor this weekend.  I heard from a little bird that attends school there (ahem....wonder who that is???) that they were giving him a surprise birthday party.  So we did our family thing last night with all the siblings.  He is big....REALLY BIG....into Transformers.  So that is what we focused on.  The big hit was a Wii game that Jeffrey gave him!

Birthday boy and oldest sister, Amy

With his shirt sister Mary Clare made him.

His reaction to the Transformer that mom and dad gave him.

I love seeing that smile!!!!!

So tonight he will go hang out with all the high school kids who dote over him.  He will be a super star.  He says he wants to "give a talk about autism".  I asked him what he would say.  He told me that he wanted to tell them what it was like to have autism.  There will be a senior girl from Villa Marie who has autism and she will give a speech on the same topic.  But we will see if he actually has the nerve to do it.  Usually he shuts down in these forums.


And so....

Happy Birthday, my little boy!  It has been a lesson in life that God knew I needed.  You have taught me patience and unconditional love.  You have taught me how important the message of life truly is, no matter the handicap, and that it goes far beyond the life of the child in the womb.  You have taught me that there is goodness in all of God's creatures.  You have taught me that I can go on very little sleep and just how much I truly NEED that sleep!  You have taught me to cry, to laugh, to sing, to pray and to live.  You have taught me detachment to material things as you have absolutely NO attachment to them!  You have taught me that a mother's love is the strongest emotion on earth.  I love you......"to the moon and back again.....around the earth and back again....I love you more!!!!"

Sunday, October 2, 2011

One Week - The Final Countdown

We are down to the final week before the big Autism Speaks walk!  It has been an amazing few weeks.  I can not believe the donations, prayers and words of encouragement!  Team Camo Angel is now in 3rd place in the whole state of Nebraska!  I am in 2nd place as a top individual.  This is amazing for our first year.

But, as you guessed, I still need your help.  We are not finished.  If you have not made a donation and was planning to do so then now is the time.  We will be walking Sunday afternoon.  And if you have donated, is there not one person you know that would help?  You can forward this email with the blue link below. 


http://blba.us/i.asp?id=474951-332910406-1



Again, thank you so much for all you have done!  It has been an exciting thing to watch as we moved up in donations!  I still say I have the greatest family and friends in the world!!!  God bless!