Don't give up!

Today marks the last official day of Autism Awareness Month, but in reality EVERY day is an Autism Awareness day for a family struggling with Autism.  We have had a crazy month for sure!  How fitting that our little Sassy would not only get her diagnosis during Autism Awareness Month but also that she would be diagnosed at 2 years 4 months, the exact age Peanut was when he was diagnosed!  This past week was a wonderful week for us.  Peanut's school was on April vacation so we were able to spend a good portion of our week acting like a "typical" family.  We enjoyed running errands, using our new sand and water table,and a fun playdate with some friends. It was nice to spend so much time togeather.  I miss Peanut when he is gone at school on his long days.  What will I do when Sassy turns three and will be at school too?!

Many of us did as much as we possibly could to spread awareness this month.  With awareness comes acceptance for our children and that acceptance means the world to them.  I wanted to end the month on an encouraging and positive note.  I think people are thinking I'm off my rocker.  I get a lot of sympathetic looks and get asked "How are you doing?"  But the thing is, we are all doing great! Yes, Sassy was diagnosed, but that doesn't mean it's the end of the world for us.  We remain positive in our attitude and strong in our determination to help our children maximize their potential in this world. We will continue to spread awareness and we will hold strong to our positive outlook.  As I've said previously, and I mean it....Autism is our Goliath, and our Giant WILL fall!  With God's help we can overcome this, I know we can! 

There is a song that has inspired me lately that I'd like to share with you all.  It's sung by Third Day.  It's called, 'Don't give up hope" and I think it's perfect.  So to all of you out there dealing with the emotional rollercoaster that is Autism, don't give up!!!!

God Bless all of you and thank-you for your continued support and love!

Mommy Provost

Resurrection Sunday

This morning Peanut was rummaging through his Easter bucket full of new little toys and out of no where he says, "It's Jesus!"  We asked, "Where is Jesus?"  and he looks at us and says, "On the cross!"  This Sunday, lets not forget what Easter is all about.  Happy Resurrection Sunday!

1 Peter 1:3
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead... (NIV)

My Goliath

Today was the day.  As I walked into the Autism Clinic with my little Sassy in tow, I knew we would be walking out with some kind of diagnosis.  We walked in and sat down.  Sassy immediately began to explore the new area she was to spend the next 3 hours and I sat at a table with 4 professionals (a child psychologist, a child psychiatrist, a Speech Therapist and a Behavioral Anaylist), and took a deep breath.  They began to ask me questions about her medical history and her behaviors.  As I began to answer, I could see a glimmer in my vision off in the distance.  "Oh no!" I thought, "Really? Why now?!" 

You see, I suffer from ocular migraines.  My migraines are triggered by stress, and they begin with me seeing silver stars in my vision, progress to complete loss of the right side of my field of vison and end with a searing pain deep within my skull that I wouldn't wish on my worst enemy.  Thankfully there are some migraine medications out there that help and I quickly excused myself so I could take a pill.  I bumbled my way through the questions they asked and then it was time for them to start the ADOS test.  I tried my best to watch and comment while they performed the test. (Let me say, this is not an easy feat when you are partially blind!)  They then ushered Sassy and I into another room to relax and play and munch on snacks while they sat together to discuss what each of them saw during her evaluation.  We were told it would take approximately 10 minutes.

As Sassy jumped around the room with her snack I began to feel a pain behind my left eye and I knew the pain was on the horizon.  I looked at my watch.  It had been 15 minutes and still no sign that they were ready for us.  I gave in and I took a second pill (which I never do!).  I sat in the small kiddie chair and closed my eyes and prayed.  "God I know your will, not mine will be done.  Please just let me get through this!" 

I soon became a bit annoyed.  We had been waiting for 45 minutes now in a small room.  Sassy was beginning to tire, and so was I.  60 minutes into waiting I realized my head didn't hurt, the little wonder pill had kicked in, and then I was thankful for being in that room still.  It gave time for the pill to work, so I could have a clear head.  Suddenly the door opened and they were ready for us.

The Behaviorist played with Sassy while the rest of them spoke with me.  They told me they thought Sassy should have blood work done (genetic testing, thyroid levels, B12 level...all the same stuff Peanut had when he was diagnosed).  Then they talked about a concern they had.  You see, 2 days ago Sassy began to sniff.  I know that sounds funny, but it literally is a constant sniffle, but without the stuffy nose.  My husband and I checked and her nostrils were clear as a whistle.  Apparently, this could a sign of Tourettes.  They said it could be a tic or it could be a way for her to stim.  Either way, we were referred to a Neurologist.  Finally, they got to the part I had been waiting for.  They said Sassy was tough to evaluate.  She has some great language and it could be quite deceiving.  The Psychiatrist looked at me and said, "We checked in the DSM IV, and she fits the description of Aspergers.  Your daughter has Aspergers Syndrome."  I sighed.  My baby angel, my Sassy, my little love bug, has Autism too. 

It was official, I was now the mother of not one, but two children with Autism.  They talked with me about supports and services and were very supportive and open with opinions.  They encouraged me, promised follow-up and then it was time to go.  I didn't want to get up.  Once I walked out that door it was final.  I forced myself to get up and off we went.  My deja vu began when we began to make the phone calls.  Just as with Peanut, we had to make the calls to family and friends.  I sat back and remembered when Peanut was diagnosed.  I remembered the feeling of fear, dread and uncertainty.  I didn't have that this time.  I knew what to do, and I knew what I was facing.  Autism is my Goliath, and I know we can conquer it.

Sure I cried, of course!  Any mother would.  But this time, I was ready, and I knew what to do and who to call.  I got home and began my emails to therapists and programs.  Everything Peanut was doing we wanted to do for Sassy.  My son's progress is miraculous and I will have nothing less for Sassy.  I know there will be good days, and there will be bad ones.  I know some days I'll feel stronger than others, but through all of it I know God is with us.  Nothing is to hard for him.  Autism is no match for God.  All we need to do is pray and keep pushing through.  I know prayer makes the impossible, possible.  Thank-you to everyone who has left comments of support and love.  We love and appreciate you ALL.  I leave you with this:

 ^"But now this is what the Lord says: `Do not weep any longer, for I will reward you,` says the Lord.`Your children will come back to you from the distant land of the enemy.  There is hope for your future,` says the Lord. `Your children will come again to their own land.` "

Jeremiah 31:16-17 (New Living Translation)

Mommy Provost

A Wake-Up Story

Welcome to Holland.

I originally came across this in "Mother Warriors" and feel it's very fitting for Autism Awareness month.  Enjoy!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thank-you God for small miracles

This afternoon was a long day for Peanut at the school.  When I went to pick him up his paraprofessional (he has a 1:1) was beaming and said, "We had a great day today!"  I got him in the car and began to drive home.  At the first red light I came to I opened up his communication notebook (like I always do) and read this entry from today:

"What a great day Peanut had!  He made great eye contact when he was talking.  At quiet time Peanut and Eddie sat on the floor and played with beads and macaroni.  They had a wonderful conversation.  It was very unscripted, meaningful back and forth for about 10 minutes.  They talked about the tools they were using, the Celtics, and the cloths they were wearing.  All the teachers just sat there and watched in awe."

The light turned green, I wiped the tears from my eyes and continued to drive home.  Peanut had a good afternoon, and as he got more and more tired, he got more and more crazy.  I was still reeling from his social interaction with Eddie at school and then another thing happened. I handed him his pants after taking his bath and he did the coolest thing.  He put them on!  Now this may sound funny to some people, but we have been working on getting dressed independently since his diagnosis in 2009 and he has NEVER done this without a lot of hand over hand assistance!!!!!  He put his pants on all by himself tonight!!!!!

We work hard all day, we research, we plan, we pray, we cry, we persevere, and we keep pushing through, and then one day, all of that hard work and determination pays off.  All I can say, is thank-you God for these small miracles...Thank-you God.

"God is our place of safety. He gives us strength. He is always there to help us in times of trouble. The earth may fall apart. The mountains may fall into the middle of the sea. But we will not be afraid. The waters of the sea may roar and foam. The mountains may shake when the waters rise.  But we will not be afraid."       Psalm 46: 1-3


Mommy Provost
                       

Our life with Autism.

April is Autism Awareness Month.  In order to make people aware we need to first educate.  Now, I could sit here and spout off statistics and information such as what to look for or symptoms of Autism, but you can find that everywhere right now.  I've decided tonight, after a long crazy day with my 2 little angels, I would write about what our life with Autism is like for us.

The day Peanut was diagnosed was the last day of life as we knew it.  Everything changed.  It was a slow change, but drastic none the less.  Every day I wake up at 6am so I can get a shower before both of my children wake up at 6:30am. I'm by far not a "morning person" and I can't even begin to describe how much I would LOVE to sleep in.  I can't shower while the kids are awake due to safety concerns.  One symptom of Autism is a lack of safety awareness.  Combine that with Pica, ataxic motor movements, clumsiness, and Sensory Processing Disorder and you have 2 energetic balls of injury.  My husband does what he can, but he currently works 2 jobs to support all of the expenses related to Autism, because you see, almost nothing related to Autism is covered by health insurance. (Even if you do not choose to use Biomedical treatments).

After the children wake up they settle themselves in front of Curious George (on TV) on the couch (Peanut usually curls up into a tiny little ball until he's ready to enter the world with the rest of us) and I get started with our day.  My husband jokes that I'm "the bartender".  I line their cups up on the stove with juice and then I get to work dividing out their morning supplements. Some are mixed into their juices and others are served up with a small bowl of cereal and neither child gets the same thing.  We then move on to diapers, breakfast, and getting dressed.  In the midst of all of this I manage to fit in a cup of coffee and maybe some food (if I'm lucky).  The rest of the day depends on our schedule but we are usually out the door by 9am.  Peanut has school (special ed preschool with ABA worked in) 16 hours a week at various times, he has private sensory integration therapy and music therapy and 4 hours a week of home ABA.  He also has appointments with his specialists.  Sassy also has many appointments for her tummy issues and sensory issues (including an appointment this month at a local Autism clinic to be evaluated for Autism).

I have a planner that I carry around with every appointment and phone number needed for our life.  I have post-it notes for my "to-do" lists plastering the pages of my planner. I spend a part of each day in food preparation because of their diet (Organic, GFCFSF).  I also spend time on data collection in regards to behavior as well as a food diary (to track down any culprits of belly issues.)  We have a white board in our kitchen to list what we are working on this week, to keep us all on the same page.  Every interaction is an attempt to be therapeutic.  An ABA principle, OT, PT or speech goal may be worked into everything we do.  Everything has a therapeutic purpose in our house (for the most part).  Some may read this and think it's taking things a bit too far, but it's the reason Peanut has made such a HUGE change in such a small span of time, and why Sassy's issues are harder to notice. 

As I said before, my husband works 2 jobs so there are many nights when I get the kids bathed and off to bed on my own because he is still at work.  Although it is hard for me to do this all on my own, it is even harder on him to be away from his children for so long.  After the kids get to bed I spend some time to pick up (sometimes, lol), and unwind.  You can usually find me on the couch with my laptop on my lap and the TV on.  Most of the time the TV is background noise and I'll have multiple browers open to the various thing (all related to Autism) that I am reasearching at the time.  Oh! Don't forget, I also need to work every day housework into my day/week too! 

Some days are good days and I actually can forget for a little while that we are ever effected by Autism, and then other days are rough...real rough.  We deal with various issues related to Autism ranging from behavior and communication issues to tantrums and head banging.  I have tried to describe what it's like to have a child "stimming" all day long.  For me, it's what it must be like to endure Chinese water torture.  You know, when they tie you down and slowly drip water on you in the same spot over and over and over again until you snap and go crazy?  It's like that.  At first it's no big deal but the more and more it happens over and over it starts to get to you.  Part of the reason for this is when Peanut stims, it's usually on me.  He bangs his head or body on me, he head butts, pinches, squeezes or hugs one of my an arms or legs (which makes it difficult to do pretty much anything).  This is the only thing I have encountered in life (so far) that has evoked such a strong reaction of anxiety in me.  Combine that will Sassy's tantrums and you've got an anxious, stressed out mommy.  By the end of the day I'll be ready to scream, I'll have little patience and I may even have the shakes.

Don't get me wrong, I love my kids and despite all we deal with on a daily basis, I would NEVER change who they are and where our family has been on this journey.  Call me crazy, but I have been able to find beauty in Autism as well.  Autism has brought me to find pure joy in the smallest things, like my child uttering what may seem to be the simplest word or watching them interacting with another child.  It has taught me to look at the world from a completely different view, and it has shown me inspirational strength.  So what if our house is packed full with every possible therapeutic toy known to man.  So what if our toys are all packed away in clear rubber containers and labeled with pictures (to encourage communication and force interaction to ask for help).  So what if I have picture strips all over the house to explain how to use the potty or wash your hands.  When my child turns to me and hugs me and says, "I love you."  I don't take it for granted.  I hug them and say it back and then I hide around the corner and cry my eyes out.  Those moments will never get old or taken for granted.  Those moments will always be treasured.

Autism is so much  more than is illustrated in the "What is Autism?" on an informational website. (Although these sites are very important).  I urge all of my fellow Autism families this month to share what Autism is like for them and what it means to them.  Feel free to share your story on my blog or facebook page.  Lets go beyond the definitions and share with others, so we can help them to understand more.  If people can begin to understand, then they can begin on their journey of acceptance and acceptance can go a long way for our children.

I again will quote Temple Grandin tonight, because it is simple, true and powerful.

“I am different, not less.”

              Temple Grandin

God Bless,

Mommy Provost