Some Much Needed Support!

     I cannot believe I am doing this...
I have SO MUCH still to do for Jay's 13th birthday party tomorrow, but I also really need to write a quick post! :)
     As I have said before, I know one of the reasons I am doing a blog is because God wants me to be REAL. To tell the whole story. I can't put a mask on and act like everything is always perfect and that I never struggle.
     Lately we are dealing with new challenges with our kids that are directly associated with HORMONES! I know everyone gets tried during the tween/teen years, but as I have said to my friends, "Autism complicates puberty and puberty complicates autism." I really cannot go into detail today, but let's just say that things that have been a challenge in the past that we had basically conquered, have tried to re emerge, and seem to be a bit nastier in some respects. 
     I KNOW that God will get us through. I trust Him and He has helped us to get this far. He will not abandon us! However, even though I don't doubt that, I had gotten "bone weary." I mean, I have been fighting hard, praying hard, and believing hard. I needed some serious support!
     So, this past Wednesday night at church, after a LOOOOONG day and right after Lucy had a MAJOR meltdown and Michael had to take her home, I asked for prayer. I cried and tried to express my heart. I told everyone to not mistake my tears as hopelessness or giving up. I just needed the Body of Christ's prayers for us!
     After I shared, the Pastors called me up and had everyone gather around me. Then the tears REALLY started to flow! I had hands on my back, hands holding up my arms, and someone was even on their knees with their hand on one of my feet. Boy, oh boy, did I feel LOVED and COMFORTED, and SUPPORTED!!! I felt stress just roll off of me and an even deeper peace washed over me. Prayers just flowed out all around me for all of us - me, Michael, Jay and Lucy Kate.
     Afterwards a dear brother asked everyone to picture themselves holding up our arms just like Aaron and Hur held up Moses' arms when they were fighting a battle. When they let them down, they were losing. When they held them up, they won! (Exodus 17:12-13)
     My prayer today, as I feel the prayers and the support of my Church still, is that I will also be able to support others. I got to announce the first meeting* of our support group, Gateway Autism and Other Needs Outreach on Facebook today! We are SO excited about what God is going to do. I mean, SO EXCITED!!! If all we ever do is come together once or twice a month and express our doubts, fears, and questions and then receive LOVE, SUPPORT, and a KNOWING that we are NOT ALONE, then I say MISSION ACCOMPLISHED!!!  

 

*check my facebook page for details!

 

SUPERHEROS

     I know it has been forever, but I just haven't honestly had the desire to write until now... 
     We have been in school for 30 days and things are going better then ever. One of the big pluses has been Jay's ability to focus, communicate, and stay on task. Our OT and ST expressed concern in the summer about his attention and we began to look into the ways we could help him. For those who do not know me, I have never wanted to put Jay on medicine. Not because I have a problem with it, but because I have never thought he needed it. Some of my close friends have had to, and I say "bravo!" Thank God He has helped scientists to discover ways to help kids who need a little help! 
     With all that being said, I have become very careful about what I give my kids medicine and food wise. I try to only offer organic, natural food to my family. I am so grateful that the nurse practitioner that we have been seeing suggested that we try the natural route of giving Jay herbs to see if that would help with his attention problems. We agreed readily, knowing it may not work and we may still need to turn to medicine. 
     He has been taking rhodiola and bacopa for about 3 weeks and I am amazed! I could tell a difference the first day! He was looking me in the eyes and answering questions the FIRST time I asked him. He was able to focus more on his school work and get more done. AND, his creativity has exploded!!! Jay has always been very creative with making up story lines for movies and drawing storyboards. However, those abilities seemed to soar!
     The thing I liked most was that JAY IS STILL JAY. I was afraid of medicine changing Jay's personality. No way! He is still quirky and funny and so so happy. I love him just the way he is! He has just emerged out of his shell even more! 
     Also, THIS IS NOT A CURE! I think too many people want to cure autism. NO, Jay would not be Jay without it. More than ever I am convinced that autism is not only a difficult journey for our family, but a BLESSING!
     I felt so inspired to write this morning when we started studying about felines in our science book. The text was describing all of the amazing gifts, instincts, and talents of cats. One of the things they have is a very heightened sense of hearing. They can hear the tiniest mouse squeak and the footsteps of tiny rodents underground! I had the thought, "WOW! That is like having a SUPERPOWER!" The next thought to hit me was, "Lucy Kate also has VERY sensitive hearing! Her ears are the very reason I have to spend every praise and worship service at church in the back nursery. Her hearing is the reason I can't just go into Walmart whenever I want. Her heightened sense of hearing is the reason we have had to leave fun and exciting events earlier than expected. But, SHE HAS A SUPERPOWER!" 
     God began to talk to me about seeing this as a blessing instead of a curse. It is something that I have to lean on Him for the strength to deal with. Something that has caused me to have more patience, contentment, and compassion in my life. 
     God doesn't make mistakes. I will never forget one morning after home school with Lucy when this house was still Mom's and Dad's. I came upstairs to have coffee and a chat with Dad, something that had become our daily ritual. I am SOOOO grateful for that time! We were talking about Lucy Kate's sensitive ears, and he began to apologize to me. "She got it from me! I am so sorry. I have very senstive ears! I can stand outside, hear the birds singing in our yard and identify them. Some sounds really bother me." I told Dad to not apologize!!! I wish I could tell him that he passed down so MANY wonderful things to us... even SUPERPOWERS! Thank You God, for choosing us to walk this path of righteousness for your namesake. And thank you Dad... for everything.

Facing the truth...

There is a fact of life that is finally dawning on me and becoming more real everyday... Jay is about to be a teenager!!!
     I have seen the signs for awhile now... acne... the need for deodorant... getting taller and leaner... caring about girls... his long gangly body barely fitting the length of a couch or his twin bed and he is getting facial hair!!! AHHHH!!!!!!! In my mind, because of dealing with pervasive  developmental delay, I have tricked myself into thinking there was more time.
     Does this sneak up on everyone??? I am blessed to be able to spend all day everyday with my kids and really enjoy every moment. I have always been able to console myself with the thought that "This is how God made life to be - we all grow up and mature and time moves on. I will NOT despair over my babies growing up!" However, this new milestone has been the hardest by far.
     I am sure if your kids are grown you totally get this! I think I have been told hundreds of times by other parents, "Savor each moment! They don't stay little for very long!" That is easier to do when all of the milestones seem to slow down and you get to recognize and truly celebrate each one as you do with a kid with special needs. When they were smaller and we went through a particularly challenging phase, I would have to choose to not think "I can't wait for them to grow up and get past this!" (Well, maybe potty training... I was ready for that to be over!) Usually I just knew in my heart that "this too shall pass" and I just waited and prayed for that time to come. One thing I have learned to be true on this journey is it usually gets worse before it gets better! If its really hard right now, maybe that means "And suddenly" is coming and there will be a breakthrough!!!  Talking, potty training, saying "I love you Mommy", writing, reading, being strong enough to be able to sit still in a chair for a prolonged time... these and countless others have been celebrated! 
     I guess God knew I wouldn't mind because I never wanted to grow up myself. I was never "chomping at the bit" so to speak. I was content to not drive until I was almost 18. I was happy to have younger siblings to give me a good excuse to watch cartoons, play with barbies, and read picture books even into my teens! I have ALWAYS loved being around children, just singing, laughing, learning, and playing. I was content with having more time to do that with my own kids. 
     Even now, they still play with toys and pretend like their younger peers... they still enjoy cartoons and look forward to Saturday morning when they can sit and watch all day! They want to go back to Disney World asap and Michael and I do too! They still find pleasure in simple things and it means the world to me that because they are home schooled, they have not had the pressure from peers to hurry though their childhood.
     NEVERTHELESS, here we are... I can't stop this from happening... JAY IS GROWING UP! He is not that sweet baby boy anymore that always ran away from me as fast as he could go! He walks beside me now, almost looking me straight in the eye. He doesn't need me as much. I can't hold him in my lap. He doesn't want me to grab him and kiss him in public anymore (and I will try not to embarrass him, but I will ALWAYS kiss him!) 
   Speaking of "running away from me"... We were in the waiting room at therapy the other day and there was a sweet grandmother there with her 4 year old grandson. He was excited about going back to see the therapist and he was a slick little booger. He DID NOT want to sit down and wait and he even slipped back into the gym and she had to chase him down. He was strong and she was trying her best to hold him down on her lap. I remember those days VIVIDLY! With Jay and Lucy both, I have spent many an hour just trying to keep them from running away and possibly getting hurt. I have worn myself out making them SIT STILL and OBEY... I knew this sweet lady was tired. My heart went out to her and I said a silent prayer on her behalf.
     The deal is, I need to make peace with this- I can't hold them down in my lap anymore! I know I may secretly mourn the passing of the simpler, easier times of their childhood, but I have got to be able to let them "get up" and grow up into the man and woman of God they are destined to be! I need to continue to guide them with a steady hand. I have to keep my feet on the "Rock" and help them traverse this crazy path of adolescence. Jay himself has been reluctant to grow up. He struggles with wanting to do his "own thing", but he also gets upset when we tell him he is getting tall! He sorta slumps and crouches down when we measure him. When he began home school, he asked me with tears if "9 year olds still play with toys?" I told him that "all men play with toys - the toys just get more and more expensive!" He also did not want to celebrate his birthday that year... he wanted us to sing "A Very Merry Un-birthday " to him when he blew out the candles!
     It is important that I help him understand that God knew what He was doing when He created us to grow and mature and leave the childish things behind... there is a time and season for everything! We have to choose to celebrate and recognize God's hand in it all. God will use me to help calm his fears about all the changes taking place and we will both bravely step into this next season together!
     AND SO, HERE'S TO PUBERTY!!! AND to the grace and strength from God to make it through with JOY and the ability to be more and more independent so they can make their own marks on the world! (pray for me... :)

The Battle belongs to the Lord!

I honestly thought when I started this blog that I would only write about my kids and our journey with autism. Now I feel led to write about my own personal struggle with weight. I guess God wants me to "bare all"... eek!
     This is important because what happened with me affected my children, Michael, my whole life! Right in the middle of discovering what was going on with my kids, I FINALLY started to do what I needed to do to deal with my own problems. I had struggled with my weight since I was very young, but it had gotten to a desperate point. If I was going to be able to be there for my family, to fulfill this calling of caring for my very special kids, and be healthy and strong, something had to give!

 This is me holding Lucy, May 2003.

This is me and Lucy Kate, April 2003

     Weight loss or gain is not just a physical thing! It is spiritual, emotional, psychological. NOBODY likes to talk about "why" they are overweight, BUT EVERYONE likes to talk about what to do about it. Diets, pills, exercise, surgery, etc... are some of the most popular topics to discuss and it has become its own multi-billion $ industry! I tried all kinds of things before. But, I never really gave it my all. I "tried". I would always give up and give in to my cravings or my need to comfort myself with food. God had been dealing with my heart for a long time, and basically what happened is I finally decided to give in and cooperate with Him. As soon as I had Lucy Kate (2003), I began to ask GOD what to do and what to change instead of listening to what everyone else was telling me. I was desperate! I figured He made this body and He knew what would work.
     God is SO gracious and kind. He took me by the hand and we began to address just one thing at a time. The very first thing He told me to do was to change all "white bleached flour" products to whole wheat and whole grain. That's all. Then after I got that, He had me start exercising everyday. After a couple of weeks, I cut sugar intake to one small dessert a day.  As I began to learn how to hear His voice and obey in each little thing, I could tell a change was happening... not on the outside, but on the inside! I had not lost one pound by the end of the first month, and I began to feel discouraged. My brother Enoch was attending Morehead State University at the time and he was studying physical education. I told him that I was not losing and he encouraged me. He said, "Marty, your body is fighting you! You have scared it by making these changes, and it is doing everything it can to hold on to the weight! Don't give up! Keep on! It will give up eventually and you will start losing!" Not a week after our talk, Dad went into the hospital with his heart problems! Boy, was that a KICK IN THE BUTT! I knew that I could not give up. I was 100 lbs. overweight, and there were heart problems, diabetes, cancer, strokes, and all kinds of junk on both sides of my family. I wanted to be there for my kids!!!
     I don't want to focus TOO much on the physical part of my story... I want to make sure that you know that the most IMPORTANT THING was God was doing a work on my insides - my heart! My part in all this really was to let Him in to do the work. I had put up "walls" all my life around hurts and idols and pain and sin and abuse and I had dealt with it by shoving it down and anesthetizing myself with FOOD. It was easier to run from the pain and ignore it. In order to really change, I had to be willing to go under the "knife"-  the Sword of the Spirit of God's Word and let Him do surgery. I had to be willing to go back and walk through some awful things with Him holding my hand. The Holy Spirit is such a Gentleman! Yes, it hurt to remember the pain, the shame... but He was right there the whole time, HEALING ME and setting me FREE!
     My heart began to turn towards Him... I began to truly fall in love with my Savior! I realized that all the I had ever needed was in Him! When I was hurt, I needed HIM! When I sinned and I felt condemned, I needed HIM, not chocolate to drown my sorrows in or to dull the pain. HE HAD THE ANSWERS to ALL the questions! I began to fall in love with the truths in God's Word. The Truth was setting me free from a prison of fat. Seriously!
     All of this was important because not only did I need to be thinner and healthier so I could chase my kids around and hold them when they were having a fit or work with them in all the physical ways I needed to, I needed to be sensitive with my ears unclogged so I could hear the Spirit direct me in HOW TO HELP THEM.
      You see, everyone seemed to have an opinion on what would be best for my kids (just like everyone has an opinion on how we should lose weight). The internet, the television, doctors, therapists, family, friends... they all wanted to help and so they gave advice on what we should do. "Change their diet..." "Go to such-n-such doctor or therapist or hospital..." "Buy this..." "Put them on medication..." "Give them this supplement..." etc., etc., etc.... I needed to be able to know what GOD was saying. I need His Wisdom because not every child is the same. He created my kids and no One knows them better. What worked for some will not work for all. I have appreciated that others care enough to share the information they could find.
      The other reason my weight and our journey with autism is connected is the fact that God was teaching me that I COULD NOT DO ANYTHING WITHOUT HIM! He wanted me to stop trying in my own strength and to learn that the battle is the Lord's! Just like in the story of Gideon, it was good that it seemed impossible for 300 Israelites to win against thousands of enemy soldiers. Just like many other families, we were not given much hope from the world of our kids succeeding at anything. AND, we knew NOTHING! I mean, nothing about autism or what to do. God even warned me about doing too much research... He wanted to receive ALL THE GLORY for the victories He would give us! He wanted me to just obey Him and do what He said whether it made sense or not. For example, He told me to NOT EXERCISE while I lost weight. I stopped after the first two months and as I obeyed, 100 lbs. came off! (It took 2 1/2 years, but it came off.) He has asked me to do some unconventional things with my kids too, and we continue to see victory after victory that can only be attributed to HIM and HIS WORK!

     I have been asked so many times "How did you lose the weight?" I even taught a couple of classes trying to share what I had learned (I don't know if I actually helped anyone or not!) My short answer has been, "Bible study and prayer." That is true. But, I really think the best answer is, "I listened when GOD told me what to do. By His strength and grace, I obeyed, and He changed me from the inside out. He may lead you in a totally different way. The most important thing is that you let Him guide you and let Him deal with the real reasons for your weight gain."

Almost to my goal - 2005

This is me in 2008 holding my niece Kayleigh Anne Short.

     The weight issue is a continuing journey. It is definitely the "thorn in my side". And, it's okay. I have gained little bits back and lost them too. I have had to continually yield myself and choose to turn from my "old ways". But, I can honestly say, only with the grace of GOD am I forever changed and I will NEVER go back. I have listened to God's directions and I have tried it my own way too. BUT, I know I am FREE and I will never be the same again. It has been almost 10 years since Lucy Kate was born and hitting 40 has brought all kinds of new challenges in my weight and health. I can't do what God led me to do before and still be successful (I am sure those of you who are 40+ can understand!) I exercised regularly for two years and then realized I was depending too much on that and I was eating whatever I wanted, so I have stopped until I can get my food intake to be what God wants it to be. I am once again listening for that still small voice as He leads me in paths of righteousness for His sake and His glory! This is a LIFELONG JOURNEY and God is NOT finished with me or my kids yet! Can I get a hallelujah!

Last weekend...me and my honey <3

Which Voice Will I Listen to?

Sometimes I let fear in...
     Like the fear of a fit or an episode with one of my children. Or, the fear of my child never learning what is the right or appropriate thing to do socially. Or the fear that something else will happen to put them in extreme danger like one of them wandering off. There is also a lingering fear that I am not going to do whatever they need to succeed (it will be my fault).Or maybe I am babying them too much. Will they ever grow up to lead independent happy lives? Will they get married? Will I ever have grandkids? Or maybe just the fear of the WHOLE DANG THING...

     Before we knew anything about autism and before Lucy Kate was even born, Jay had his first "fit". We were with our playgroup from our church at the apple orchard. We had scheduled a hayride and a tour, and we were waiting for our turn. We had been there for awhile and all the other kids (mostly girls) were toddling around, pointing at things, and jabbering. Jay was not really paying attention to them. He was exploring, but on his own and I was chasing him around. I was in my first trimester of pregnancy with Lucy Kate. I honestly thought his behavior was a "boy thing", although we had two other boys with us and they seemed to want to be with the other children. 
     Out of nowhere, Jay gets upset. I mean UPSET! Crying, mad, fighting me as I was trying to pick him up, and there was no way to console him. The only thing I could think of to do was take him out to our car and separate him from everyone. This was more out of embarrassment than anything else. I didn't know it at the time, but it was the right thing to do. I didn't have any idea what set him off, but because I got him away from the situation, he was able to calm down. I watched from the car for signs that it was our turn to take the hayride, and thankfully we were able to join our group for the rest of the day. He was almost two when this first episode occurred.
     The next time, we were at Kingdom Karnival, a celebration we have at our church as a substitute for Trick or Treat. He had just turned two September 29. In those days we had this party in the basement of our church and there was barely enough room to turn around! The place was packed with people, decorations, games, sound, and FUN. To Jay, it was too much! At first he seemed okay. Then suddenly he broke down again. I took him to the nursery and he slowly calmed and began to play happily with the toys. Michael followed me, and I told him that this was similar to what he did at the orchard, and the only thing I could think of was that he was "overstimulated". 
     It was about this time that I began to get concerned. I could not explain my feelings. Please remember this important fact - this was 10 years ago. Autism was NOT widely talked about and NO ONE seemed to know the first signs! His vocabulary was mysteriously disappearing when the other children seemed to be talking more and more. I told myself once again that this was a "boy thing" and that I should not worry about it. His doctor supported my theory and that helped. I kept my concerns for the most part to myself. I didn't want other people to think I was a worrier. Jay in general was such a HAPPY baby! He smiled ALL the time and rarely cried. He was SO content to play by himself and was easily amused by me and Michael. He slept well at night and took good naps during the day. He was easy to take care of. We went everywhere with him from day one and never had a worry about him being good and happy. Until...
     I had Lucy Kate in March of 2003. It was becoming evident to me that something might be wrong. My sweet husband bought me "What to Expect From the Toddler Years" and I sat with a newborn in the bassinet beside me in the hospital, extremely hormonal, reading about how my sweet boy did not "meet certain developmental standards." YUCK! I felt my worst fear was being confirmed. I voiced my concerns to Michael, but then shoved them aside. 
     Life became complicated... Dad had his heart issues and spent time in the hospital having heart surgery... I began my weight loss journey... we bought a mobile home and began getting everything ready at the site for it... I was raising a brand new baby and was trying not to worry about Jay who seemed happy to play by himself in his room or to watch tv... we painted and installed new flooring in our new home and after Christmas 2003, we moved (which was no small feat I must add)! I didn't know it at the time, but a dear friend who was an occupational therapist was watching Jay closely, and was starting to talk to my Mom about her observations. 
     Mom broke the news to me slowly and said that our friend wanted to come out to the house and just spend some time one on one with Jay. After her visit, she talked to us about sensory issues (what?), modulation, and developmental delay. She recommended that we get him enrolled into the Public Preschool after Christmas. UGH. "I am a TEACHER!" I thought. "I did not want my baby in school until Kindergarten! I am a stay at home mom! Public???"
I was so upset and torn up. I had NO idea what those words meant that she used to describe Jay. She did not use the word autism. I knew this was serious, but I had no idea what was coming. 
    Then, as I was on the edge of DESPAIR for my sweet boy and his future, my Pastor's wife followed me and Mom out her door after the annual Christmas tea she gives for all the women in our church. She had words of encouragement that changed everything! God was already speaking to me about faith and I was drawing closer to Him everyday in Bible study, but I NEEDED this personal word!!! She told me about her own struggles when she was young and how her mother would take her face in her hands and tell her that "this too shall pass!" They had been told she may never graduate and here she was a retired teacher! She got real close to me, looked me straight in the eye and said, "NOTHING IS TOO BIG FOR GOD! This just happens to be the struggle he will face. Everyone has SOMETHING. Some parents have to deal with their kids taking drugs, drinking alcohol, sleeping around, being rebellious... you won't have to. THIS is the struggle. And God has GOOD things for him. Take him to the public preschool. I worked there for years and they will know how to help him!" 
     So, there it was... which "Voice" was I going to listen to? The voice of fear? The voice of the giant named "Disability" or "Autism"? OR would I listen to the "Voice of Truth"? This song by Casting Crowns became the theme song for that time in my life.
     

 

 

 

God was trying to reassure me... He knew I did not understand. He knew this was the hardest thing I had ever faced. He was cheering me on, and letting me know that He would use this for His glory! He is in control and NOTHING is impossible for Him. I would have to choose every day to listen to Him and not give in to Fear. He has NEVER let me down yet!