Autism Awareness~30 Days of Snapshots 2012: Day 14

Author Note: This should have been published yesterday, but I had to finish the Photos before I could post it

My Facebook Status after Baseball Today: “Home from Dak’s Miracle League Baseball Game. LOVE Saturdays for SO many reasons! I Get to watch My boy play Baseball, I get to spend time with other Parents who Understand the roller Coaster that is raising a Special Needs Child, AND I get to watch my Girls interact with thier Friends who understand thier Roles as Siblings….Miracle League is Truly one of the Biggest Blessings in my Life.”

Miracle League Baseball because “Every Child Deserves A Chance to Play Baseball.”

As a Mom of Special needs children, This truly is one of the Biggest Blessings in My Life.

It has become more than just watching my son get a chance to play baseball…

 it has become something more….

a chance for me to talk to other moms who know what it is like to love a child with special needs….

 it has become a way for my husband to connect with his son…

 to watch them do something we thought they may never get to do together….

It has become a way for my “NT” child to connect with other “NT” siblings who understand what she faces with special needs siblings….

It has become more than just a game, it’s a community, a family, and I am blessed to be a part of it….

♥

♥I will leave you with this Photo…

one of my favorite moments…

Dakota steals home so He can go sit down in the dug out and get a drink

( He used to just walk off the feild, so This is progress  :P) ♥

♥ and In Closing…The Miracle League Song…

I simply do not have the words to Thank all of the people who work so hard every year to make this happen…

The Buddies who volunteer to help the kids who need help…

the coaches…

The Businesses and churches who sponsor teams….

The amazing woman who handles all the coordinating, organizing…

Thank you each and every one for giving parents like me one of the greatest Gifts in the world…

Churches and Autism: It just needed to be said

I have been thinking about this topic for a while.  I had a Phone conversation with a friend and fellow Autism mom the other day that I can’t get out of my head. You see, her daughter was told AT CHURCH! that her parents are going to hell because they don’t come to church. Forget that the church KNOWS they have a child with Autism who keeps them at home. Forget the damage done to this child, and to her relationship with her brother because she has been told her parents are going to hell because they don’t go to church because they stay home to take care of her brother.

Church is SUPPOSED to be a place where we love even the least of these, where unconditional love and Christ’s example are shown. Families are getting shunned from churches because their child is “Too disruptive” , “too un-manageable” , because their child doesn’t fit in with his/her “age appropriate group” and needs special attention. This is UNCALLED for!

Matthew 19:13-14

¹³ Then people brought little children to Jesus for him to place his hands on them and pray for them.

But the disciples rebuked them.

¹⁴ Jesus said, “Let the little children come to me, and do not hinder them,

for the kingdom of heaven belongs to such as these.”

I have been blessed to have found a church family who loves and accepts ALL three of my children, but it was not an easy task. We visited many churches, before giving up completely. If it was not for the persistence of a neighbor and friend, we never would have found the church we now call home.

I have been following the blog “The Inclusive church” and they have GREAT Info and resources for helping churches reach out to the growing Autism community. Earlier this month they did a series of blog posts entitled “5 Things to Know about the Mother of a Child with Autism” links to wich can be found below:

Part 1:

She may feel relief upon the receipt of an autism spectrum disorder (ASD) diagnosis for her child.

YES!!! It was such a relief to KNOW why my son had stopped talking, had pulled away from all displays of affection, to know that I was NOT doing anything wrong.

Part 2

She may experience the conflicting emotions of grief and hope.

And I do, it is a rollercoaster of emotions. There are days when I grieve for all the things my son may never do. It has taken me 10 years to come to the point where I LOOK for the blessings and find the humor and cling to hope, but I still grieve, I still hurt, I still cry.

Part 3

She fears exclusion.

Not only for my son but for my “Typical” children as well. His behavior can be embarrasing to my girls, and I fear that others may laugh and point, that He may never make friends

( Though if you read back through some of my recent posts, you will see he IS!!)

Part 4

She needs your respect, not your opinion or advice.

*or your pity*

Part 5

She values action over empathy.

want to help? then HELP! Reach out , offer to take him for a walk when He is getting restless. run laps racing him in the gym or in the yard ( this wears HIM out, keeps Him occupied, and makes HIM happy as well as gives me a break) reach out to HIM and HE will reciprocate, though it will take patience on your part, but he will let you into your world once he realizes you genuinely care.

I encourage anyone who is interested in reaching out more to the Autism community to check out the Inclusive church blog, and especially the posts linked above.

Matthew 25:35-40

³⁵ For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, ³⁶ I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

³⁷ “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? ³⁸ When did we see you a stranger and invite you in, or needing clothes and clothe you? ³⁹ When did we see you sick or in prison and go to visit you?’

⁴⁰ “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

 

Autism Awareness~30 Days of snapshots: Day 8

to watch a Miracle League Game is TRULY a Blessing…

a lesson in Love….

determination….

Awareness…

Baseball….

for the love of the game in it’s PUREST Form….

*I get to play BASEBALL!*

*Joy*

*Time with Daddy*

*Forming Friendships*

*Dreams do come true!*

*Baseball friendships*

*Big sister and Baseball Buddy*

*”BASEBALL!!!!!*

To all the people who make this possible…

THANK YOU!

Siblings and Autism:’unsung heros of autism.’

This is something that eats at me almost daily. a subject near and dear to my heart. I have THREE kids. one happens to have autism. It breaks my heart when my husband and i have to take turns at the girls ballgames because one of us has to stay home with their brother…..or when we have to leave a friend’s party early because he is falling apart on sensory overload.

I worry that they will grow up and resent Him. I fight to make sure they get quality time with me and Daddy. I do everything I can to make sure they get to go to youth group and AWANA, to sleep-overs at friends houses, to try and make sure they have lives outside of Autism.

I fear that I am not doing enough, and I pray daily that God will Guide my steps as I try to raise the three precious gifts He gave me.

Please Click on this link and watch the Video ( don’t know any other way to do this) Siblings and Autism:’unsung heros of autism.’ and Thank you, Jim Watkins PIX for helping shine the light on this!

*Follow up to this:(April 10,2011) Jim Watkins posted a Follow up on His Blog

This is My Autism (via Light the White House Blue for Autism)

My friend Jess over at Diary of a mom wrote the following Letter to President Obama. I couldn’t have said it better myself. For my son, for her Daughter, for all the Families living with Autism, I encourage you to read this letter, and to Light it up Blue on April 2nd

Dear Mr. President, I need your help. Last year, on April 2, 2010, you issued a statement expressing your support of World Autism Awareness Day. I appreciate the fact that you did that. Your support is vital to our community. But I’ll be honest with you, Mr. President. I didn’t even see your statement until I really started digging around on the Internet last night. With all due respect, Sir, if I didn’t see it, I’m guessing almost no one saw it. … Read More

via Light the White House Blue for Autism

Counting my Blessings

Ok, I know I know…It has been a while since I have written anything! I didn’t even manage to get around to writing my “look back at 2010” I started to…I just kept getting interrupted.The all too familiar “Mooom!!!!” or a blood curdling scream from my autistic son…or the sound of my daughters fighting…*sigh* . Thankfully, life goes on even when I can’t find time to write, though I must admit, writing my thoughts down provides a much needed outlet. Anyway…..

My thoughts today are on blessings, a Very specific blessings actually, my friends, my children, and my Husband. The past few weeks have been more overwhelming than usual, and I have found myself reduced to tears repeatedly. Feelings of helplessness, loneliness and isolation have swarmed in to attack me in the midst of problems my son is having at school, Cursive and division disasters with my youngest daughter, and preparing for high school with my socially challenged teenager. It never fails that when we are feeling our most vulnerable, we find ourselves under a barrage of emotional attacks until we feel we need to dive for cover. God is faithful though, when the cover we dive for is His word, He pulls us through, and I have found that prayer through tears this past few weeks has once again, been my rock.

Last week, when I thought I could not handle anymore, when i needed a friend, a break, something….God used what was a hard, bad situation, to bring me one. Our dog ran away ( don’t worry, he is home safe and sound now 🙂 ) and the kids didn’t sleep, nobody did that night. Friends came out of the woodwork to help search for our beloved critter, and it was the reminder I needed that I am , in fact, not alone. It is easy for me to forget that sometimes.

the past two weekends, I have had surprise visits from friends, a front yard FULL of children playing and laughing, ALL three of my children included. The sound of their laughter is the most beautiful sound in the world to me, it is good for my heart, and it was , again, the reminder I needed of why , even on the hardest days, I keep pushing forward, keep pressing on, fighting the good fight.

 

A Place in this world

My Mind is a whirlwind of thoughts this morning.  I got up early and sent my teenage daughter off to her youth Group Pancake Fundraiser for Haiti , and never got to go back to bed because my son doesn’t get the whole “sleep in on Saturday” concept. It messes up his routine….and we can’t have that! Just one of the many ways I have learned to keep the peace with a child who happens to be autistic in the house. I peeked in on my youngest at about 8:15, and she was still sleeping peacefully in spite of her brother’s loud repeated announcements that the sun is awake, and its time to wake UP! As I watched my 8 year old sleeping peacefully, I was taken to a quieter place, and I couldn’t help but smile.

The next place my mind traveled was to the wide rang of things my son occupies his day with. If you walk into His room, you will find that it is, yes, a disaster area ( he is a pre-teen boy afterall) you will also find Thomas the tank engine, Buzz Lightyear, Duplo Legos, Hotwheels, and a few super hero toys ( Batman, Iron man , superman and the like) Oh and I must not forget the collection of Star wars things and the mountain of stuffed animals that hides his bed from view.  I never know from one minute to the next if it is going to be a “super hero” or a Thomas the Tank engine kind of day. I get glimpses of pretend play, like the other day when His younger sister came flying out of his room screaming “Don’t Hit me, I am NOT evil!!!” and He was RIGHT behind her, lightsaber in hand ” I Dak-man, I Battle Evil”  I had to fight back the smile as I informed Him his sister is in fact, NOT evil, but the delight that he was actually Participating in pretend play.

I am suddenly overwhelmed with the reminder that my children are 13, 11, and 8…we are approaching teen years at a break-neck speed, well ok, so we are there with one….but you get my point. I find myself wondering just how do I guide them through their teen years, How do I survive teenage boy years with an autistic son who still can’t tie his own shoes…and I gotta explain PUBERTY????  As my mind races all over like a the small metal ball in a ping pong game, a song comes to mind, and things start to calm down….some. It is a song that has helped me many times as I find myself wondering , facing crossroads in life….

The wind is moving

But I am standing still

A life of pages

Waiting to be filled

A heart that’s hopeful

A head that’s full of dreams

But this becoming Is harder than it seems….

As I start to focus on the song, I see images of my children at their different stages flash before me.

My Oldest, one year away from High school,active in youth group, knowing since she was five that she wants to be a vet……

My son, teetering on the edge of teen years, peering over the brink, and yet, still very much the mindset of a small child,   all my unanswered questions…..

My youngest, the social butterfly. This child makes friends easily, she knows EVERYONE! and gives the Most AMAZING Hugs EVER!

Feels like I’m

Looking for a reason

Roamin’ through the night to find

My place in this world

My place in this world

Not a lot to lean on

I need your light to help me find

My place in this world

My place in this world…..

How can I help them, each unique and special in their own way, find their place in this world? Am I doing the best that I can to prepare them for life?  I have so many worries, so many questions. So much is unknown. All that is left for me to do is cry out and pray…Pray that as my Son enters Jr. High, that God will protect him from bullies that lurk everywhere. There has been an outbreak lately of special needs kids getting harassed at schools…it scares me. Pray that as my oldest enters High school that her choices will not take her down the paths I found myself on, that she will be wiser than I was. Pray that my youngest will not lose her loving spirit as she grows up, that her heart for helping others will not get squashed by the cruel world we live in. Am I doing a good enough job of teaching them “No Compromise?” of teaching them to stand up for what they believe in, that courage sometimes means standing alone?

And so, here I am, a Grown woman, Mother of three, and still I find myself searching for my Place in this world……

Balloons, Bubbles, and Tears

Phew…I am Exhausted! But it’s in a Good way! Today was my son’s Birthday Party. I Had fretted and thought and worked over every last detail since he told me last month that he WANTED a Party this year.  We have never really done a Party for him in the past….sure we have always celebrated His special Day, the Day we were blessed with Him as a precious addition to our family…but a Party? no, He couldn’t handle it…..too many people = instant Meltdown…..too much noise = Instant meltdown….messing up his routine= instant meltdown….so we always just found small special ways to celebrate Him as a Family unit.  So, yeah, when he announced he WANTED a Party, my heart jumped.

I asked Him for a Guest list, not quite sure what the answer would be. He responded with a short list of names, and I cried….not sad tears, but tears of joy! My sweet boy was making connections!!! was making FRIENDS!

so we started Planning….Guests were notified. I decided to make a Fire engine Cake. and the Party was set in motion. Last night, my two daughters and I stayed up well past when I normally send them to bed, baking, frosting, totally destroying the kitchen I had JUST cleaned……

I fussed over every detail….wanted everything “Just right”. It became quickly apparent about 11pm, that we needed to stop for the night and think about getting some sleep, so we put the cake, and icing in the fridge, and headed for bed, after all, it would be a busy Saturday.

I got up early this morning, and after 2 cups of coffee , it was back to working on the cake….

The Finished Cake….

with the Cake done, it was time to focus on the other details. In the back of my mind, thoughts fought for attention with my “to do list”…..”Would he have a meltdown?” ” What if Dak decided He was not in the mood to be Social today?” As I Busied myself with making sure the Bubble toys were filled…and water Balloons, and Pizza was ordered….Barking orders at my girls and my husband, I tried to shut out all the things that COULD go wrong.

Finally Party time arrived, and guests began to show up. Dak was Excited as each car pulled up ” My Friends!! My Friends!!” He yelled as he ran to greet each car that pulled up. Again, tears welled up in my eyes, tears of joy. I thought back to when He was always off to himself, seemingly locked in his own world, and as I watched my 11 year old son running around the yard interacting with a precious chosen few I felt my heart dance. Suddenly all my worries and fears about the day faded away, and I watched, and smiled and captured every moment I could with my Camera…..

As a Mom, I have always enjoyed throwing a Party for my children’s Birthdays…but this one, for me, was different…This Party…was a Milestone. We made it through the day with NO Meltdowns from Dak…..as the Party wound down, and we said goodbye to friends, gave hugs, and Thank you’s, I started to relax, and sat down at my computer to Unload the Memory Card FULL of Photos I had taken onto my computer…and that’s when I unraveled. I realized that when the Memory Card had beeped at me that it was full, and I had went to delete a Few Photos to clear up some space, I had managed to delete ALL the Photos because I was not focusing on WHAT I was doing…just on trying to rush through it and not miss a moment. It was an INSTANT Meltdown.

My wonderful Husband looked at me like I had lost my mind…He asked me if Dak had enjoyed HIS day? and I nodded, wiping tears away. The Man I have been married to for almost 15 years, then told me to breathe….that the fact that DAK had enjoyed the day was what mattered…and sure, it would be NICE to have the Photos…but not the end of the world. I took a deep breath…He was right, but that really didn’t make ME feel any better! Then he suggested I go ask Google if there was any way to recover deleted Photos….long story short, with the help of Google, a Data recovery Program and my neighbor’s computer…I was able to rescue my precious Photos.

As I was going through the process of recovering from my mistake, I stopped and asked myself WHY I had a meltdown over PHOTOS? I mean Really? The Answer Hit me as I was back at home editing the Photos I had worked so hard to recover……The priceless looks of joy and happiness on Dak’s Face….Dak INTERACTING with Friends…..I may never get an hour long conversation about a Field trip….or know how much fun His Party was…..but I Have the Photos to look at…and a Picture is worth a Thousand words…especially to me…a Parent of a barely Verbal child.

ACT today (via a diary of a mom)

One out of every 88 military children has a diagnosis on the autism spectrum. This is a message that needs to get heard! Thank you Jess for this Blog post.

Photo from Rome News Tribune ** I’ve been holding onto the following post for far too long. I’ve stared at it on the screen, been ready to hit publish, then stopped short time and again. I’m just not convinced that it makes the point strongly enough. I don’t think that the words adequately convey the intensity, the exigency of the situation. I’m afraid that the post loses something because it focuses on such a miniscule slice of the overwhelming … Read More

via a diary of a mom

Epilepsy and Autism: Does the study of one help us understand the other? (via Autism Speaks Official Blog)

I am actually glad to see this article….strange as that may sound. My son has had several EEG’s since His Diagnosis with Autism 7 years ago…although Due to whatever reasons…I have been unable to get a Referral for another one for 3 years…forget the Family History of Epilepsy…or that He is one of THREE Cousins on my side of the family who is on the spectrum….or that His EEG’s in the past have all come back abnormal….some even showing seizure activity…so why is it so hard for me to find a Dr who will LISTEN to me as the parent….who will HELP me make sure my child is healthy….Autism does NOT mean He is broke…just wired differently, I have said that for years now…BUT That being said….His seizures are just ONE of the aspects that NEED attention…He cant enjoy summertime…because the extreme southern heat often bring on a seizure….

Staff Blogger, Leanne Chukoskie, Ph.D., Asst. Dir. Science Communication and Special Projects Epilepsy is a common comorbidity in autism, occurring in as many as 30% of all cases.  In overnight or 24 hour EEG studies, atypical brain activity known as spikes or epileptiform activity—that looks somewhat like brain activity during seizure but does not occur with a seizure—has been measured in as many as 60% of autism cases.  What can this atypical b … Read More

via Autism Speaks Official Blog