Happily Ever After

The toy market really knows what they are doing . As a mother of a 4 year old little girl, we are surrounded by Disney Princess'. Toy isles are as pink as can be, filled with all things girl and my daughter eats it up ! A trip to target is not complete without a trip the the toy isle . What is the one theme in all princess movies ? Getting your Happy Ever After! It was no different for me as a child. I had very few ambitions growing up . I wanted to meet the man of my dreams get married and thought that was the whole battle and once that happened life was smooth sailing !

Soon after high school my prince charming a.k.a Tommy showed up in my life and my fairy tale began. We fell in love and a few years later became man and wife. So in my mind , battle was won and here came happy every after. I still didn't realize what that meant . Life was great for a few years , We moved up in careers , bought our first home, and had our first baby. Happily ever after was pretty good so far! The problem is we don't see the second half of these princess' life . They ride off into the sunset and live in what we can only imagine as a life of eternal bliss. We don't see them struggling to pay bills, loss of jobs, and unexpected diagnosis'. We aren't prepared for "real life" or at least I wasn't . I have come to learn that my biggest fear of finding the right husband would be the least of all life's challenges. That part came quite easy its the rest of life that has been hard. I just want to see the future , to know it all ends up alright. I want the good seasons of life to stay until my day on this earth is done. Are you picking up that I don't like change ! We need to prepare ourselves and our children for the different seasons of life, that there will be ups and downs , good times and bad , sickness and health, richer and poorer. This is why these are marriage vows because life is messy and hard and God will be with us through all of these times and if we are lucky so will our Prince charming! We didn't see autism coming and in hind sight I am glad we didn't , we weren't ready for it. We needed it in small doses. Had I known I would have a child on the spectrum , would I have wanted a baby at all ? Maybe that is why it took us a while to get pregnant so that I would appreciate that I was lucky to have a baby at all, and had I known immediately the struggles he would go through at his birth I would have missed out on so much bonding time with my newborn because I would have been worrying about what all this would mean for him. God's plans are better than mine and I am lucky my prince reminds me of this when I forget or don't want to see it . I love you Tommy! I am so glad we are going this road together!

Can I get an Amen with a nonverbal child ? You betcha !

Your life will Change

Ethan doesn't have much to say most of the time . Well actually all the the time . Ethan is nonverbal. He has said maybe 5 audible words in his whole life. The times he did speak it was so clear as day and it was this magical moment that in a perfect world we would have our cameras ready to record these precious moments. But they come out of nowhere and are gone before we can even fully comprehend the moment . We talk a lot to Ethan and around Ethan but aren't quite sure what he understands and what he doesn't. I have often thought and prayed on "If Ethan can't talk and his receptive language is so poor , How is he to learn about God ?" After long contemplation on the subject this is what I have come up with .  There are a lot of things in this world that he can't do , in fact the list of his can'ts are far longer than his list of cans. But Ethan is a special guy. There are a lot of things Ethan can do that even I can't . For instance, Ethan has the ability to not care what people think, he loves everyone despite their faults , he has amazing ability to forgive an forget , all these things I struggle with daily and he does it effortlessly. From my observations of Ethan his ability to communicate doesn't stop him from having a relationship with God either. Ethan's favorite songs are "God is watching over you" , "No greater gift than God's great love" , "Oh how your life will change" Vast Voyage" "God is wild about us" and many more from bible schools . He can listen to them over and over and over and..... over again. He likes to play them loud and proud , he doesn't worry about offending anyone . I think sometimes God uses this about Ethan to help spread his word, cause Ethan has played these songs  on trains , in cars, at school, at the grocery stores, doctors offices basically everywhere. He plays them with such joy that he can't contain himself, he is jumping and dancing  and most of all laughing . There is no greater sound than that of Ethan laughing . A new joy that Ethan has put in my life is bedtime .... for more reason than one :), but a boy who doesn't like to read books or listen to books in normal settings will lay in his bed while I read to his younger sister before bed, he may not be engaged in the book but he is laying nicely in bed and is hearing the words read over him, the last few nights I looked out of the corner of my eye and caught him just staring at me , taking in everything I said and he reached out and requested (in his own way) for me to rub his arms and legs while I read. Every night , I sing " May the lord bless and keep you , may his face shine upon you and be gracious and give you peace" which is the verse we read over him at his baby dedication . When I start singing it he gets so giggly and give so much eye contact . If I stop mid song he will vocalize to keep going . Following this song we say prayers that usually read something like this:
     
         " Dear Jesus , thank you for today , thank you for all your many blessing , please help Ethan and Hailey to sleep well so they can grow big and strong and smart , help Ethan to talk soon and go pee pee and poo poo on the toilet and help him to be a good big brother to Hailey, help them to have sweet dreams.In your name we pray ....
Amen

Ethan loves the routine of this , he even religiously says this "yeah , yeah" after each part almost like an Amen! It has become my favorite part of the day !   I can see that Ethan has his own special relationship with God . I may not get to discuss the deep intricacy of the bible with Ethan but it's the "having faith like a child" part that Ethan has down pat  and can teach me about . I can only do my best to set a good example and point my kids to God , the rest is their own special relationship.

Getting stuck in Doubt

What do we do when God doesn't show up like we want. What happens when we pray and pray for something only to feel that our prayers have fell on deaf ears? I can say that doubt was never an issue for me until Autism showed up in our family. I can say , I had faith like a child . What happens when life gets ugly and we get thrown the hard questions ? Where is God in Autism? Hard questions give birth to doubt, cause when we doubt we give ourselves an answer to questions that we may not otherwise get . It may not be an answer we like but at least it is an answer.  Doubt comes when whats "right now " doesn't feel right ! Doubt comes when our time tables don't line up with God's .  In John 20:19-29 , After Jesus had died on the cross , the disciples were scared and confused and in hiding. In their hour of need Jesus shows up and says "Peace be with you ". The disciples were overjoyed and ran to find their friend Thomas to tell him the good news that Jesus was alive, yet Thomas was in a dark place and didn't believe. As a mom with a child with autism ,Autism can be a hard place, I can find it easier to stay home with curtains closed  away from the world of judgmental stares and comments, but just like the disciples , God has work for us to do in this world and hiding from the world is not the answer. He says "Peace be with you , As the father has sent me , I am sending you ."  Thomas was just like you and me , He had heard the word and seen the great works of the lord but his present circumstances were holding him in doubt. It is easy to want to give up , however when you wake up the next morning, I assure you, your problems are still going to be there to face you except you won't have Jesus to help you through. It is okay to have doubt , as long as you don't get stuck. Allow yourself to be open and honest  about your doubt . Share your fears with your family. Some may feel if you vocalize that doubt out loud that God will strike you down . He won't ! When you talk about your feelings and share your concerns it allows people to come along side of you and speak Gods truth into your life , as you may be in such a dark place that you can't see it for yourself . When you get stuck in doubt you start to cut out the people who can help you the most. I know I have . When I get down and lose faith , I find it hard to go to groups, or church as I am just to down to hear God's truth when in reality that is what I need the most. You want to surround yourself with people who will tell you what you want to hear not what you need to hear. When you get stuck don't isolate yourselves , cling to the people who can help bring you out of it and point you to God. Thomas was not only hiding , from the Jewish leaders , he isolated himself from his fellow believers . Thomas was not their the day Jesus first showed himself to the disciples, and even in his doubt he persisted toward God and rejoined his friends and God came to them again and reveled himself to Thomas.  Thomas had to see to believe. Jesus says “Because you have seen me, you have believed; blessed are those who have not seen and yet have believed.” The problem with Autism is that the "right now" in our lives may be ongoing for the rest of our earthly lives, we may never have the answers we seek. We may not know why our child who was developing normally until 18 months stopped , We may not hear our child say " I love you ", We may not know "Why me".  Our right now may be longer than others . Don't get stuck in the right now , their are seasons of life some harder than others, we may not see them coming , like a diagnosis of Autism. When we reach past our doubt , we can get to work on what God has in store for us . "For I know the plans I have for you, says the Lord, they are plans for good, not for disaster, to give you a future and a hope." Jeremiah 29:11 (nlt) I can assure you God has a plan for you and your child , don't take your eyes off him! And we know God causes everything to work together for the good of those who love God and are called according to His purpose for them." Romans 8:28 (nlt) If you feel like you are always chasing a cure , stop running and face the darkness , God is right there with you he wants to show you something special , something you may have missed."The Lord is close to the brokenhearted. He rescues those whose spirits are crushed." Psalm 34:18 (nlt) Be reminded of his faithfulness in the past and remember he always shows up in your hour of need! 

*This was written from my notes on the sermon of Thomas by Steve Garcia.

Holistic Moms

I am a small town girl. I love watching “The Walking Dead “ and “Glee” , scrapbooking, playing volleyball ,cooking , playing silly things with my daughter, going on walks with my dad, singing in the car, shopping, and going on Date nights with my husband.  I am about as normal as someone can get right? (I am sure that is up for some debate) I hold and embrace many titles:  Daughter, Mrs. Haggerty, MOM.  As a special needs mother I have come to gain a few more important titles such as  , advocate, therapist, taxi driver, insurance coordinator, scheduler, personal assistant, nurse, cook , nutritionist.  Recently I have gained a new tittle that I wasn’t so proud of …….. Holistic mom.

Holistic mom! Come on! Holistic moms are …… WEIRD! We have had many different opportunities to meet other parents of children with autism and my husband and I concluded that autistic parents are weird and to be avoided at all costs. Most of them fell under the “holistic treatment “umbrella.  So being called a holistic mom was not a compliment or a title I wanted.  I’m not like those other autistic parents. Be careful about holistic nature because it will sneak up on you and before you know it you too will be labeled the dreaded “Holistic Mom”. Except this time like me ……. You will learn to LOVE it.

I sometimes think looking back I wish I had all the knowledge I have now when Ethan was first diagnosed with autism.  I thought I wish I had a mom who had been down that road guiding me to make better choices right off the bat. However after giving it much thought, if I today was talking to me 5 years ago, I am pretty sure the past Jenny would have ran into oncoming traffic on purpose.  It would have been way too much information to process, information that I wasn’t ready to hear. We are all on our own journey.  We don’t get to the finish line by jumping over the obstacle course. Those things are truly put in our way to help us grow.  God allowed me to know what I needed to know when I needed to know it.  It may have seemed like a lot at the time but had he indulged everything I know now back then I wouldn’t have been able to handle it. When we were exploring this word Autism and what it meant and what it would mean for Ethan, such names as Jenny McCarthy were popping up and not in a good way. I am ashamed to say that back then I thought she was crazy for thinking metal fillings in the mother may play a part in the onset of autism. We were still relying on doctors to tell us what we needed. We thought they knew what they were doing.  Over the years we have been let down greatly by modern medicine.  Our first detour off the modern medicine train came from another mom giving us Jenny McCarthy’s book Louder than words. I will say, I didn’t want to read it. My husband read it and suggested I do the same. I told him “Jenny McCarthy is weird; her son is not like our son”. But Tommy insisted I read it and I am so glad I did. When reading her book, I got to listen to her defend her reasons for saying the things she did.  It was no longer the media silencing her and making her out to be this crazy person. What she said really made sense.  So at age 3 we put Ethan on a Gluten free Casein free diet. Our friend did a lot of GFCF cooking research and came over and spent the whole day cooking and stocking our freezer of food that Ethan could eat. I remember the first time we bought rice milk and watching him drink it thinking “okay he is going to start talking now “. Sadly that is not how it happened. Ethan to this day is still nonverbal at age 6 but the diet did help in subtle ways like less eczema, more concentration and more eye contact.  After reading that book we went on to her next book, which led to internet research like no ones business. We started trying all the supplements that all the other parents tried and eventually made an appointment with a MAPS doctor.  Our pediatrician was no longer able to help us as every answer to our questions was “he’s autistic, it’s part of the deal”.  Our MAPS doctor knew all about autism, all about Ethan’s symptoms before we did. The red cheeks and ears, the bumps behind his arms, his posture, his pain tolerance, his inability to distinguish between hot and cold.  So if you have a child with a disease that no one knows the cause or the cure who are you going to trust? The pediatrician who has no answers and no hope or the doctor who knows all about your son and wants to look outside the textbook box for answers? I had asked a lot of questions when Ethan was born about vaccine safety to his Pediatrician but did no research of my own. As parents who don’t vaccinate their children were usually homeschool freaks so the pediatricians wouldn’t steer me wrong, I mean they are doctors right? I lost all faith when Ethan was accidently given an extra shot at his 9 month well check that he was not due for. So much for the safety of the vaccines. So for years I would always said “I don’t know what causes autism, but I will always wonder if that shot had anything to do with it “I thought that would give my conjecture but also put it as if not set in stone so no one could argue with me for my own beliefs that I wasn’t pushing on anyone. I no longer feel the need to silence what I feel caused Ethan’s autism. I have done some research on it and my belief is that some children are genetically predisposed to having autism and get pushed over the edge with the environmental toxins that this society has made, such as too many vaccines, the pesticides we eat, the mercury in our mouths … so on and so forth.  In ten year’s time autism went from 1 in 10,000 to 1 in 88 and 1 in 50 for school age kids.  We have done this to our society and  to our community.  

Ethan suffers greatly for several years now with GI issues despite the gluten free casein free diet. I thought to myself this isn’t working, we aren’t going to do this anymore and within a week off the diet we can see his body revolt against him. So why wasn’t it helping the GI issues? We did some allergy testing and found out Ethan has a potato allergy. I thought at first, “great no French fries”, only to find out there was a lot more to it than that. Like every gluten free product and four we were using contained potato starch. Well no wonder it wasn’t helping his GI issues! After we removed potato from his diet as well as the gluten, casein and soy low and behold Ethan (the pickiest eater on the planet) was willing to eat vegetables, rice, beans, and noodles. He has such a healthy diet now. I had heard this from other parents that when their diet gets in check they won’t crave the carbs so much and eat healthier ( another crazy thing holistic moms said), I mean they didn’t know my stubborn son there is no way he will ever eat (  fill in the blank). But he did!  We have started buying more organic, and altered our children’s vaccine schedule.  I make a lot of my own cleaning products, I don’t buy food from the box and if I had a yard I would have my own garden. At a recent first appointment with a GI doctor I was ridiculed and made to feel like a holistic weirdo because we take supplements, do GFCF and saw a MAPS doctor. I left crying and upset.  This doctor was a real piece of work! How dare he assume I am a crazy holistic mom just because I do ……. Wait a minute is that a bad thing after all?  My kids eat food not genetically modified and covered in pesticides, they aren’t filled with live virus’ that kill their stomach bacteria, and we aren’t exposing our kids to more toxins than necessary.  So yes, drum roll please…………. I AM a crazy holistic mom! And darn proud of it. I will no longer take anyone’s word as GOD.  I will listen and do my research and find out for myself! I will not take no for an answer and I will not let someone tell me what’s best for my child.  Don’t be afraid to go against the grain… Literally! J  So holistic yes, crazy not at all. We don’t rub crystals on our kids, or chant over them, or take them across the world to see horse Indians. Which is all fine if that is what works for your child. But in our own way who am I to criticize those parents , I put Epsom salts in Ethan’s bath ( crystals) , I pray over him  ( chants) and I drive him across the state to see the best doctors I can find.  So new frame of thinking, hey whatever works for you! You can be weird, you can be holistic but you are not weird because you’re holistic. Embrace it!

Temptations

"Blessed is the one who perseveres under trial because , having stood the test, that person will receive the crown of life that the lord has promised to those who love him." James 1:12 

Oh , God's Great mercies! When James wrote this , I can't imagine that he ever thought of our Family and the trials of Autism! 

Autism itself is so HARD! I want to very clearly point out that I do not and have not ever felt that it is a burden. I do struggle with knowing its cause , it's reason, it's purpose . How can you fight an enemy you know nothing about ? It's like being attacked in the night and you didn't see or hear it coming , you don't know the damage it has provoked or how to stop it or prevent it from happening again! 
"Consider it pure joy, my brothers and sisters , whenever you face trials of many kinds  because you know that testing of your faith produces perseverance  Let perseverance finish it's works so that you may be mature and complete, not lacking of anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you . But when you ask , you must believe and not doubt because the one who doubts is like a wave of the sea, blown and tossed by the wind .  That person should not expect to receive anything from the Lord." James 1:2-7 This world may not have the answers I need regarding Autism but the God who created the heavens and the Earth does and he says specifically that he will give you the wisdom you want , you need only ask!

With this kind of monster it can be hard to fight and easy to give up . You may be tempted to feel angry and bitter . You may feel that God is tempting and testing you.  Rest assured this is not the case. For the Bible says" When tempted , no one should say , "God is tempting me. " For God cannot be tempted by evil , nor does he tempt anyone; but each person is tempted when they are dragged away by their own evil desire and enticed. Then , after desire has conceived, it gives birth to sin, and sin, when it is full grown, gives birth to death. James 1:13-15 This being said , You should not point blame, look internally first ! We are more to blame than we want to believe. Don't let yourself be a victim! I'm talking to myself most of all here ! For the last month or so  I have had  this overwhelming sense of peace  and  really pure joy on our lives circumstances . I was able to see that the journey God has taken us down , the good and the bad have really brought us to this beautiful family we have. I was accepting of Ethan and who he is and had no expectations but hope for a better future for him . But a simple mistake of taking a bath with an iPod made that all melt away in a second . I immediately let my monster out ! All those feelings of Joy and contentment were gone and anger and bitterness filled me . I let myself become the victim again. Why is God doing this to me ?  Such as in the bible it says desire (aka my desire to have a typical child (whatever that means) gives birth to sin and when it is full grown gives birth to death. So when my desires don't pan out , I sin ( become bitter and angry) which then turns to death ( death of Hope) Hope that God has a plan for this . Death of hope can start you down a road of depression that can be hard to bounce back from . James 1:19-21 says Everyone should be quick to listen , slow to speak and slow to become angry, because human anger does not produce the righteousness that God desires. Therefore  get rid of all moral filth and the evil that is so prevalent and humbly accept the work planted in you which can save you ! I can feel God working in me to achieve this , as trust me I have headed down dark paths that I couldn't even see God I could barely hear his whisper to guide me back , it would take days to weeks to put myself back together and be the Mom God chose me to be ! This time I believe God allowed me to see that monster in me to remind me not to ignore him cause if I do he will ambush me when I'm not looking . A day of self pity and tears on my dad's shoulder AKA the phone helped me remember that this path is a dead end ! Nothing is accomplished on this road except death . James 1:27 "Religion that God our Father accepts as pure and faultless is this : to look after orphans and widows in their distress and to keep oneself from being Polluted By the World!   The world has painted a picture of Autism as an undesirable and there are many aspects of Autism that I can do without but Ethan is not one of them . He is beautiful.

I will leave you with these words of encouragement. And the God of all grace , who called you to his eternal glory in Christ, after you have suffered a little while , will himself restore you and make you strong, firm and steadfast. To him be the power for ever  and ever . Amen. 1 Peter 5:10-11

Please visit Ethan's page to support him and his class at the Denver Walk Now for Autism Speaks! at :
http://www.walknowforautismspeaks.org/colorado/ethan2006

It's that time again....... Haircutting !

Today was haircut day for the family. Haircuts have morphed over the years, however I will say that we have always cut Ethan's hair on our own. I feel we know him best and can understand and anticipate his needs more efficiently. Haircuts used to be torture, and at times we would all leave sweaty and tear covered but I have always felt that Haircuts are a part of life , you will need one several times a year for the rest of your life so Ethan you better get used to it. I would say the iPhone has been our saving grace for Ethan's last few haircuts. It is the number one desirable for Ethan and he seems to do well getting his hair cut when he uses it . So I would say for us buying a $30 pair of buzzers and doing it ourselves works best , since no one is around to watch should he tantrum, they pay for themselves in one cut and you can make it as comfortable as possible, its really easy and you can learn how each time what they tolerate and what they won't . We went from having me and my husband double teaming him with movies and fruit snacks to only me and an iPod. I learned that he doesn't like to be spray'd with water so today i wetted my hands and then rubbed his head wet , He also doesn't like the buzzer around his ears so I will usually use the scissors but he is becoming more tolerant . Like I said you learn and each time gets easier and cheaper ;)! However if you want to take them to a place to get their hair cut I took Hailey for her first haircut at Pigtails and Crewcuts . They have a special needs experience and this place would be my second choice! Here is their link:http://www.pigtailsandcrewcuts.com/westminster/special-2/

So on a very personal note......

I have been really emotional today , it all started last night when Ethan decided it was a good idea to get in the bath tub with his clothes on and ...... take his iPod with him. Makes sense right ? I mean Ethan thinks " I love water and I love my phone having them both would be awesome". At the time I thought my iPod was toast and was upset at the prospect of spending another couple hundred dollars for a new one. Come to find out this morning after drying out and resetting it , it works good as new. So why am I still sad ?Because yeah I didn't want to spend $ on another but the root sadness is that I am frustrated that my six year old thinks its a good idea to do this , that its still okay to poop/ pee his pants, that its okay to wander off from your mom at Kohls. I am upset that he makes bad choices and if it were Hailey I could punish her and get the point across. So today i have been having a huge pitty party and the best part of my day started at the lunch table... I made the kids their lunch and I sat down to well cry some more and Hailey says " Mom, why are you crying "
Me: "I'm sad".
Hailey: "Why"
Me: Because Ethan can't talk
Hailey : Don't cry , Ethan will talk soon.
Me: You think so ?
Hailey : Yeah , you just have to be patient ..... He's eating

LOL !!!!!!!!!!!!!!!!!! Love that girl ! She knows how to cheer me up . Such a great big sister.