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!