And a happy New Year

Based on 2009 data , Autism is estimated to affect 1 in 88 kids. My Ethan is a 1 in 88 kid. Autism has taken over our house , It makes every family decision from what to eat , where we go, how long we can stay, where we live and believe it or not but which Santa Claus and light displays we see during the holidays . It may be a huge part of our family but we won't let it disable us. Ethan turned 6 years old this month and looking back on the year thanks to all our friends , family , therapist , teachers and church we have a lot to celebrate!

Here is a list of can'ts turned into cans made possible by all of you for 2012. (Based on Firefly data)

Expressive Communication Goals

1. When two objects are held in view for Ethan , he will chose one by pointing proximally to the desired object paired with eye contact 2x in a 10-15 minute activity , across at least 3 different people over 3 consecutive days .  (Mastered date:First quarter 2012)

2.When preferred food item is available but out of reach (across table or with a teacher, Ethan will take icon off the from of his PECS (Picture Exchange Communication System) book and drop in adults hand 6-8x during snack with at least 3 different teachers across 4 consecutive days. ( Mastered date: First quarter 2012)

3.When desired objects are offered to Ethan , he will combine intentional vocalization and or eye contact , 6x8 a day , across at least 3 different  adults and over 3 consecutive days.(Mastered: First quarter 2012)

 

4.Ethan has mastered Phase I and Phase II of PECS with 90% accuracy across 5-6 preferred objects and 2 or more caregivers and is currently working on Phase III. ( Mastered: 3rd quarter 2012)

Receptive Communication

1. When a familiar adult says "Ethan look, and is not in his line of sight within 5 ft, Ethan will orient and look at object 2x within a 10-15 minute period across 3 different people. ( Mastered 2nd quarter 2012)

2. When retrieving a toy or needing to place objects in containers , puzzles ore specified places Ethan will follow a proximal or distal point 2-3x within a 10-15 minute activity with 3 different adults over 3 consecutive days . ( Mastered 3rd quarter 2012)

3. When an adult gives a verbal instruction " Give me (item) paired with their out stretched hand he will give the object 80% of opportunities across 3 different adults and over 3 consecutive days . ( Mastered : 3rd quarter 2012)

Imitation

1. With toys that involve one motor action (roll car, stack blocks, throw ball, etc) Ethan will independently perform the action 3-5x in a 10-15 minute play interval across 3 different adults  over 3 consecutive days . ( Mastered: First quarter 2012)

2. During songs with an adult, Ethan will independently imitate 1-2 motor actions with in 3 seconds of adults model for 2 different actions across two teachers for 3 consecutive days . ( Mastered 3rd quarter 2012)

Adaptive Skills

1. Ethan has mastered bathroom dressing routines with minimal assistance. (Mastered 2nd quarter 2012)

2. Ethan is 97% pee potty trained this year and can stay dry for up to 1 hour and 40 minutes .

3. During meal time , when eating preferred spoon foods, Ethan will use a spoon , bring to his mouth and repeat for most of his meal at least 2 meals of the day for 3 consecutive days . ( Mastered 2nd quarter 2012)

4. When it is time to transition from one activity to another and this is indicated with a verbal direction and a object, Ethan will begin the transition without protest by either moving his body toward designated place, 8-12x a day across 3 teachers for 5 consecutive days .  ( Mastered 2nd quarter 2012)

Ethan may struggle daily with autistic behaviors but he easily slips into the hearts of anyone who will let him in . Most of his teachers now know the song " God is watching over you and God is wild about us " by heart now. Firefly autism gave us the best gift! The gift of hope . That there is nothing Ethan can't do with a little help. As Ethan ages into elementary school age he will start 1st grade this year but will continue to have our amazing Firefly Outreach team come to the house 3x a week and participate in Speech and Occupational therapy 2x a week as well. I know for many of you this is a hard financial time of year as it is for us , but we ask that you prayerfully consider donating to Team Ethan . The funds will cover his firefly therapy costs for 2013. With your financial gifts, prayers and the ultimate therapist "God" , Who knows what goals Ethan will accomplish next year . The sky is the limit! 

Merry Christmas and Happy New Year!

Lawmakers Look into Federal Response to Rising Rates of Autism | C-SPAN

Lawmakers Look into Federal Response to Rising Rates of Autism | C-SPAN

Hi there ! You may think you know me as the 47 % of Americans who rely on the government to sustain my life. Who uses food stamps and medicaid on a daily basis. Some may even judge me as while I use such services , I drive a Toyota Prius and have a I phone  You see from outside sources It looks like I am playing the system . But I am here to set the record straight! I know these people that you think I am . I watched as a mom bragged to me that she didn't have a job and that food stamps covered her Kerig coffee cups and that she didn't want to make an appointment until after noon cause they don't  get up until then. However I am not that girl. I am in no way a saint, but I worked hard , graduated at the top of my class , chose a career and up until 8 months ago made a humble but sustainable living at a job I truly loved! But at the end of the week you worked 50 hours and after paying for your special needs sons medical bills and childcare for which is only used 4 hours a day but you have to pay for full day and you have absolutely nothing to show for your paycheck it can become very daunting  You see while solely running the whole business end of a dental practice and having my phone beside me making sure my son received all his medicines , ate the correct diet, got taken to the bathroom every 30 min, got to his 2 therapies on time , called insurances companies , made endless doctors appointments there was no sanity , no Jenny and most of all no paycheck . I couldn't handle it anymore ! So I quit my job that I loved to care for my son which is even more of a full time job than running the practice. I already purchased my car and my husband works at sprint and got a deal on my phone so that's where that comes from . So please stop and think before you get offended at me . Walk in my shoes for a day ! I Listened to the governments hearing on the epidemic of autism. 1 in 88 kids are now diagnosed with ASD disorders. My son is 1 in 88! Treatments that are not a cure but can help ease the symptoms that Ethan faces daily cost $64000 a year ! Our insurance covers $34000 a year . This is the cost for only one of Ethan's therapies  and my salary for a year . My now stay at home mom career which is a silly term considering I am never at home is a 24 hour job. Ethan participates in 2-3 therapies a day I drive 80 miles a day to get him to and from his therapies, I change up to 7 dirty pants a day , up until this week cooked a gfcf diet for him , I keep running records of his therapies to turn into state agencies and insurance companies and on top of that am making regular appointments for the whole family. I can now see why I have been so very stressed and run down. As my job in the dental field , I can see fruits of my labor. As our practice grew and patients came in and out happy ,I received praise for my job from my boss, I received a paycheck in all these ways I was rewarded and felt valued. Well what if in your job you worked 24/7, you didn't  receive a paycheck and you put your heart and soul into making your job grow and prosper and you were actually losing money, your boss never thanked you and you saw your efforts failing daily. That is how I feel . Lets say your job was to potty train a child and it was a year later and you are still changing 7 poopy pants a day would you feel valued ? If you paid all this money and time and efforts for your child and after a 3 years your child can't say your name , melts down at the drop of a hat , can't be left alone for a second .I think it is harder now that my 3 year old can do so many things her brother can't . It was one thing when she was a baby and Ethan was ahead of her , but when she can sing songs, and feed herself and tell me her needs and wants and make friends and use the bathroom independently it can be easy to give myself a pitty party. My job as Ethan's mom no doubt has meaning and purpose but can sometimes be extremely overwhelming. We did not asked to be a 1 in 88 parent. We don't  know the cause of this condition or how to fix it . We are a family who does there best with the gifts God gives us . We love help when it comes our way but don't expect or rely on it. My husband works and goes to school full time to give our family the hope of a better future. Number one reason to go to school and get a college education.... you never know if you will be a parent of a child with ASD. No one owes us anything not even the government but if there are services which can help families in need I will consider myself lucky to receive them and be blessed by the programs as long as they are offered. But please don't assume we live high off the hog as Medicaid while they covered Ethan's speech and Ot and his dental surgery doesn't cover his behavior therapy which is the $64000 said earlier, and since Ethan is now deemed disabled we no longer qualify for food stamps so we can chose between food for the family or Ethan's therapy bills. Yes these therapies are expensive but you can't put a price tag on your son starting to communicate using a picture system, or looking you in the eye , or peeing on the toilet the first time . Government doesn't  owe us anything, and as much as I would love to think so , God doesn't owe me anything either. So in this life I hope that as a human race we can find the source of this awful disease and help our precious kids to live to a great potential , I hope we can learn to love each other and care for each other cause if earth was heaven we wouldn't need God . God has set the bar on how to love one another and help us through our lives cause each of us have our own autism our own hurt . So please think before you judge lest you be judged and let us pray that God shows truth and light on the autism community whether it be through us individually or through our government.

Identity and Worth

I realized today how sheltered Ethan is and I like that way. This world is full of cruel people who don't understand things. Like going to the dentist today and Ethan was jumping and flapping in the waiting room and people were staring and I"m sure they weren't happy that Ethan was screaming at the top of his lungs while there child was getting there teeth clean. Ethan goes to school , and therapy and church and he fits in. Its the rest of the world who doesn't fit in . I would like to move to autism Island . I/'m going to go into a sermon from last week at church .It was about works of the law vs. faith. Until last Sunday i totally thought I understood that concept that Christ died for our sins and nothing we can do on this planet can "earn " our way to heaven it is only through faith. I get that . But what I didn't realize is that I was doing that very same thing all along . I have been searching for the "reason" why Ethan is autistic. His autism consumes me . I feel it is this overwhelming burden , a punishment . that until I "get it" (whatever God is trying to teach me from this) That Ethan won't be healed , cured or whatever you want to call it .  Then I get mad at God for using my precious boy as a learning tool for whatever his plan is and I make my relationship with God conditional. That's where I am relying on "the law". I think if I were just good enough or kind enough or patient enough or loving to others enough ( you fill in the blank) that  God would fix Ethan which is ultimately "my heaven".  I have read the story so many times of the woman who had so much faith that she crawled through the mob of people just to touch the robe of Jesus and I wish that he were this present being that I could crawl and drag Ethan to so that he could touch his robe and be healed. Then I start playing another game that I must not have enough faith or Ethan would be one of the few miraculous healed children of autism. I have made my worth and my identity on this planet wrapped and intertwined with the hope that something I did must have caused this so it is up to me to fix it  and If i don't then what is the point of anything? Pastor asked us after the Aurora movie theater massacre to not search for an easy answer to a tragedy cause an Easy answer is like a band aid it will help you sleep at night but it doesn't fix the heart of the problem and when something comes up in the future all that damage that was there before and was never really healed will come back to the surface and will only add to your heartache . He suggested that sometimes the answer is to wait , listen and pray and sometimes there is no answer vs. making a false one to help you heal short term. Its so hard ! I look for purpose in this life to know that there is one. So i make a quick answer that God does have a purpose for Ethan but I worry that at the end of my life will I say that all "my hard work" was worth it . That right there brings me full circle that I am trying to earn through works my spot in heaven.Did you hear what I said ? "That all MY hard work" was worth it. I guess the hidden blessings in autism book was right . That even if on Ethan's last day on this earth that his medical record chart still contains the word "Autism " that I know in my heart that in Gods presence he will be perfect and autism is not in his heavenly chart for all eternity. And in that statement I will have my faith as this world is only temporary. I hope I can live up to that . 

Losing yourself in autism

Is Autism a disease or a disorder? Is it contagious? Absolutely! I realized today that I have let my son's diagnosis get inside me and consume me to a place where there is no longer Jenny. I have often mourned Ethan's diagnosis but have never realized that what i was really doing was also mourning the loss of me. As my 8th wedding anniversary approaches this month i have reflected a lot on how different I am from Tommy's bride all those years ago. I am not saying people don't change because i know they do . But I often think how did I become this ? How did I become so angry and bitter  and hateful and selfish ? So hardened to joy and compassion and to only see the band in every situation.  The Jenny Lee that my dad loves so much , the girl who is quiet and shy and sweet and fun and lovable . That girl is suffering from autism too and my cloak of autism is the me I am now. I have let autism contaminate me . No wonder, this disorder stole my little boy away from me and is stealing myself . To where I spend my every waking moment surrounded by this disease. I cook special meals , I change on average 7 poop diapers a day ,  I am a glorified remote in my son's eyes and rice cake fetcher and taxi cab, appointment setter, advocate, mother  and when Ethan is asleep I am scouring the internet for this miracle cure  or magic pill that will rid our family of this disease.  Yesterday I told my husband this , I told him that i was sad because I do all these things and all I want is something in return from Ethan a hug a smile something that lets me know that my little boy is still in there and that he loves me . Today i see that in the midst of the poop and tireless schedule I run I let autism cripple my eyes to stop looking for Ethan  inside his eyes. I prayed a fervent prayer for me to always see Ethan behind the autism and today I can barely get this blog typed as Ethan has come in several times to see me and I have tried everything that usually works: potty break, rice cakes, drinks, favorite shows and none have worked because he wants to jump with his mom and have me tickle him and wants me to watch his show with him . He wants me ! So now that I understand that Autism is such a thick blanket around Ethan that I can easily not see him and he's easy to miss  but with a little effort and a deeper look he is inside that head and he is inside my heart  and not in any audible words but in the most powerful way he tells me he loves me. In the same way to stop autism from consuming me I need to take off my autism cloak and remember the girl I am . The girl who Tommy fell in love with , the girl my dad  thinks I am , the girl who plays volleyball, and the flute and sings in the car but only when no one else is looking. The girl who prayed for almost a year and a half to have her prefect son come into this world . Ethan is perfect in God's eyes  and if not on this earth than in God's presence he will be healed. I need to stop letting autism destroy my happiness. When my husband and I first met he told me that I smiled a lot and I did my face hurt as I was so in love and happy that I couldn't help it . Now Tommy begs me to smile and will tickle me or honk the horn ( not as good or bravely as dad would have:)) until  I smile but it is a fake smile not brought on by my own happiness. I need to remember me . Stop letting autism consume me and stop scouring the internet for this magic pill that cures autism . I assure you if and when there is a cure for autism it will be headline news no deep searching will be necessary. God chose me to be Ethan's mom cause for some strange reason he thought i could handle it. I don't think I have handled it so well  as he may had hoped. But the old Jenny is the one he chose not this mom I have morphed into. So instead of sulking or feeling like a victim to this world I should pray that I help lift Ethan up to the destiny God has for him and pray God's work be done in him and have faith that he knows what he is doing for the plan in our lives. Because God is God and I am not.  I'm sorry Tommy, Ethan , Hailey, Mom and Dad. I love you . Thanks for still loving me.

Unconditional / Conditional Love

Unconditional love, I understand fully how to accept it, but giving it is a completely different story .  I have been surrounded by it my whole life. No matter how grumpy , selfish, hateful , rude , or unloving I am; I am shown this unconditional love from: God , my parents , my husband and my kids. Growing up when life was simple and carefree and easy I thought being a christian was so easy. I mean it makes total sense right ? How can people not get it ?God is well God. He created the universe in 7 days he wants you to be good not bad , he has 10 simple rules and oh yeah Jesus died on the cross to save our sins. Got it! I mean why is that so hard for people to understand ? What I didn't know at this point was how life can be so much harder than my own little bubble I was raised in , and things aren't always black and white. In my world it was pretty squeaky clean . I didn't worry about money there was never a lot but all our needs were met, there was no hurt or disease no broken relationships between my parents . We had a nice quiet family full of love and happiness . I mean sure there were some rough times but like i said Jesus died for our sins , God is good  problem solved.  What I am trying to say is it is so easy to be a christian until life isn't so easy . What happens when you feel entitled to something? I put conditions on my love all the time because i feel entitled to certain things. When i don't get my basic needs or lets face it above and beyond my basic needs I find it hard to give unconditional love back. When my parents can't jump in and make everything okay like they used to do. When my husband can't fix our autism or our finances , or when my kids don't behave the way i expected them too , when God asks of me more than I was planning on giving. I start putting conditions on my love for them . How horrible is that ? Like lets say for instance if you do everything right or what you feel is right and life somehow turns out wrong.  Ethan's autism has completely changed my world . It determines every single decision that i make in a single day. From what time I get up in the morning , to what food has to be prepared and on what time schedule, where we live , how much money we make , what church service to attend, what restaurants we eat at to what shows we watch , what friends we can have ?etc, etc, etc....I know in my heart of hearts that Ethan is a powerful tool in God's toolbox. He has a master plan for this little boy .  In a way I am prideful in the fact that God wants to use our family in some special way but in a complete other I have so much anger inside of me . Have you ever asked God " How dare you ....."? A sermon was preached on it at my church not to long ago. I had plenty of answers how to fill in that blank . How dare you give me a special needs child ? How dare you ask me to be a good enough mom to him ? How dare you use my son in this manner for your will ? How dare you not provide all the resources I demand to provide for him? I have made a conditional love with the Lord . So now being christian isn't as straight forward easy to understand. I mean he died on the cross to save me from my sins yet if he doesn't play the game of life the way I want then the cross wasn't enough. That seems harsh but basically that what my attitude is saying. There are days when I can stand and sing where pride and joy are overflowing from my heart and i raise my hands to the sky ( no i don't cause dad would call me a solar collector) and there are days I want to sulk in the pew and point out all my battles with God or I don't  pray cause I'm angry and i don't feel like God is for me that he is against me. Thank goodness for that unconditional love he gives as even though I say these horrible things against him he still loves me . I know these things aren't true , they are just human emotions crowding my truth that . God is indeed good, and all powerful .  He weeps at the pain I am in , he holds out his hand to me even when I am not willing to take it. God is God and I am not and I will trust that everything that comes to pass is in his hands and his promises remain true even when life seems broken. I need to find a way to remove these feelings of anger so that I can love God and love others the way they have loved me . To be a servant to my family as God came to serve us on this earth not be served. Because when I look into Ethan's face , even though he can't say a word I can see the love and innocence and the beauty inside him . Truth be told, Ethan and Hailey are not my MINE, they are on loan to me for a short amount of time . They are God's children that he has placed for me to care while they follow God's path. God dare me to be the mom my kids think I am.

Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reservedI 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.

Have you ever in your life been forced against your will to attend a continuing education class? You know the ones where you go and keep looking at your clock thinking "  I have so much more better things to be doing with my time than this ." The first time I heard this poem I was in said class. I was just out of high school and working at a day care center while attending dental school. As our daycare had a special needs child , we were forced to attend a special education class. I thought , "why do i have to take this class on my Friday night? " The kid isn't even  in my room and I don't plan on having any special needs kids. Here is where God's sense of humor came in as I myself am a mother to a very special little guy. This class wasn't boring to me , I remember to this day this poem and thought what a wonderful way to put it . Reading it now as a mother of a special needs kid I think of how amazingly accurate it is. I felt almost entitled to have have this perfectly amazingly "normal " child. I mean I'm a good girl , never got into any trouble as a kid , I mean execpt the one night of wine coolers which my parents still won't let me live it down. :) . I finished high school at the top of my class , chose a career , fell in love with a amazing man , got married , bought a house and now since I did all these things and in  societies perfect order I am ready to receive my prize. We tried for a baby for to me what seemed like a eternity . Everyone kept saying, "God is making the perfect baby for you ". I finally got pregnant and I read all the books , changed my diet , exercised , read all the books and it was finally my turn!  Ethan was special from the day he was born . This little monster came into this world a week late at 10.2lbs . He was a nursery celebrity. Everyone had to come see this humongous baby. To me and Tommy he was simply our little guy but it was hard to argue that he did look huge next to the 6 pounder next to us.  But he was gorgeous in every way . We would attract so much attention everywhere we went , waitresses would even uncomfortably oogle over him for ever , But i didn't care as he was mine! He met all of his milestones even if it was the last day it was considered in normal range . But something to me didn't seem right , he didn't make eye contact even as a baby , he would throw a full on meltdown if we would change the routine or go somewhere new.  He became a very particular child. But as we were new parents and had no other child to compare we thought "He'll grow out of it".  We took Ethan to his 18month well check and voiced our concerns that he wasn't yet talking even a little . They did a questionnaire on him and found out that he had a lot of red flags for autism.  When i heard the word Autism my heart melted as I remembered working with a girl who had a autistic son and seeing his behavior and at that point I took the doctors suggestion and left it at the door. Ethan's not autistic . How could this doctor tell anyway. Ethan is 18months old a little young if you ask me. Even though I saw all the signs and knew in my heart it was true I didn't want to believe it . I mean this kind of thing doesn't happen to me . I am not the right mom for this and no I don't want to . God made a perfect baby for me and I am not perfect for that role so no no no no and no , not happenning.  Once we accepted it and came to terms with it I decided to move to autism island. How if the statistics say that 1 in 88 kids will be diagnosed with autism  do I feel like the only mother on the planet with a child with autism.  I have worked really hard my whole life to fit in with the crowd and not stand out but another one of God's humors, Ethan stands out wherever we go. Its hard not to notice a 5 year old boy that looks like a 7 year old riding in a grocery cart making all kinds of interesting sounds while his 2 year old sister is walking the whole time next to the cart . Or how we can't just go to any restaraunt to eat , it has to have a GFCF menu or we have to bring a special meal for him, or if we go anywhere new we have to have backyardigans available to watch so he can retreat on his own.  Autism Island is a place for all of the autistic children to go where its okay to be loud , and has all pefect menu's at all the restaraunts and is full of trampoline's and pools and swings and all sensory things. Where all the parents can sympothize with you as they too go through it and can give you actual advice on potty training, food, temper tantrums because they know what works for these kids. Yes this is where i want to live . I am not all about inclusion , I saw what some of the so called cool kids from my highs chool did to a special needs kid and as difficult as it is to say I laughed about it. Now putting my own self into that mom's shoes and how she must have felt my heart breaks. So I am happy to live in Holland its all the Italian visitors who can make it tough. Cause for me its okay if Ethan doesn't make eye contact as Grandpa wouldn't have it any other way and its okay if he  wants to dance on stage at church to praise God, and its okay if he doesn't get potty trained til he's six not three and its okay if he gets loud when he's excited because I will take whatever smile I can get out of him and cherish it forever.

All about Ethan!

Okay am I crazy ? because that is what I am thinking right now. As it is now 10:32 p.m and I am starting a blog for Ethan . First of all  I am not completely sure i even know what a blog is ? Second,  I could talk and talk and talk about Ethan all day long why start this now ?  and Lastly : I like my sleep so the thought of starting this blog now seems a little ridiculous as I could easily see this taking some time . Now,  yes If i lay down now will my mind race as it comes up with the words for my first blog post ? Absolutely ! So I might as well get this out of my head and onto the screen as one way or the other 6 a.m will roll around all  too soon and a whole new day of life's  interesting paths will unfold.  After moments of thinking about it I have changed my mind, as literally a Summary of Ethan's background is too much for tonight . I will however say that this blog if for no other reason  than  to be my "journal" . I will not apologize for spelling or grammar as I was never good about that . It is a way for me to release my many feelings and tons of emotions about my son and his autism journey . So if you follow me great , if you hate it and wish I would stop that's fine too. But for now my body says "Jen , find your off switch!" So as impossible as that sounds I'm going to try to find it .  Til tomorrow.