"Because I have been blessed by thy great love, dear Lord, I'll share thy love again according to thy word."
I started journaling my thoughts and experiences when our second son, Logan, was diagnosed with Autism. It's been two years since his diagnosis, and I am grateful that I recorded my thoughts, my memories, and the lessons I've learned. I know that as more trials come our way, I can look back and remember the blessings we have recieved along the way. That I can look back and see when Heavenly Father was with my family, and with me. This journal has become more than just sharing our experience, it is also advice I would pass to a mother going through what we've been through with Logan. Along with my thoughts and memories, I included some scriptures and hymns that brought me comfort along the way. I've decided there was no better time to post this than on Autism Awareness Day. My hope is that by sharing Logan's story, I can help and encourage others.
I remember holding my new little baby boy in my arms. I looked down at him, looked at his sweet little nose, the curves of his cheeks, the soft texture of his face. And when I looked into his eyes, tears began to fall down my face. My baby was beautiful; he was perfect. I began quietly crying in graditude to Heavenly Father for allowing me to have this beautiful child. I remember feeling so honored that He trusted me enough to raise one of His children. Looking down at my Aiden, I was surprised that I even though I had never seen his face before, I had the feeling I had know him my whole life. He felt so familiar. I knew that he was mine; that he was a blessing. I knew that he was entrusted to me from Heavenly Father. That moment, so pure and rare, was one of the most beautiful moments in my life.
I thought that given the opportunity to experience those precious moments again would make us overjoyed. That finding out we were expecting again would be a cause for celebration. But when we found out just 6 months later that we were pregnant, and I feared for this baby. My whole world now revolved around my new little toddler, my sweet Aiden. How could I possibly love another? I truly believed that I couldn't. That I wouldn't be able love any other child the way I loved Aiden. So, along with other fears I had, I spent the majority of the pregnancy feeling heavily burdened with fear and concern. Near the end of the pregnancy, due to high amounts of amniotic fluid and little movement, I was monitored twice a week. During one of the visits to the OB, I felt a prompting to pray about the concerns I had been having. I knew I needed the Lord's help, but I was ashamed at myself for the way that I had felt. As I began spilling my troubles to Him, I surprised myself at the additional words that began to flow from my mouth. I had so many burdens that I kept bottled up inside and forgotten. Immediatly after my prayer, I felt comfort. I know now that Heavenly Father must have been smiling and shaking his head. I had forgotten how He loves each and everyone of His children - all of us equally. And foolishly, I was worried about loving two! I wondered for a while why He had allowed me to believe I would actually struggle to love my unborn child. I know now that I was allowing myself to stay in my own misery. That it wasn't until I put my faith in Him, and prayed, that I found relief. I know now, that that small experience - like all our experiences in this life- was necessary to prepare me for the patience and understanding I would gain from this child. For the very special love I would have for my Logan.
"If ye will have faith in me ye shall have power to do whatsoever thing is expedient in me." (Moroni 7:33)
We always knew, in the back of our minds, that Logan was different. And I say "in the back of our minds," because it was. The "red flags" were more like little pink streamers. There was a list in my mind of about 20 or so justifications for why Logan was the way he was. "Yes, Logan is still not sitting up.... or crawling.... or walking....or talking.... but he's so well behaved. He never crys; he's such a happy baby." Daniel and I would take our boys to a resturant, and Aiden (only 15 months older) would not sit still no matter what we tried, but Logan could play peacefully with a spoon or a straw for hours! (And still does.) As the boys got a little older, I would constantly watch little Aiden come over to where Logan was playing and snatch his toy away from him. Now, of course, at this age Aiden did not realize what he did was mean. But Logan would just sit there, not bothered, not really knowing that his toy was gone.
After two years of Logan falling far below "average" in his development, we were slowly waking up. We saw that Logan would still get excited about watching his Baby Einsein DVD's over and over again, which are designed for 6-9 month olds. My mother-in-law, Julie, began searching the Internet for answers. As I think back to when she showed me her list (of possible disorders Logan could have) there was one that stuck out to me immediatly. It was Autism, but let me explain.
It didn't stick out to me because I thought that's what Logan had. It stuck out because it didn't fit at all, "like a sore thumb." Logan didn't have any of the symptoms. With the very little I knew about Autism, I'd thought autistic children couldn't talk at all. I thought "autism" meant a child sitting in a corner, banging their head against the wall. That "autism" was something that "happened" to a child. Logan was verbal, and he was active. He loved running around and spinning. And Logan could look us in the eye- though we had to work for it. So I ruled out Autism as a possibility.
But we knew we needed to find out what he could have. We took Julie's list to our pediatrition. We had always seen the nurse practitioners for all our boys' "well check-up's" and still do. But this time we made an appointment to see the pediatrition himself, Dr. Norman Saba. We showed our concerns about Logan falling below developement, he started asking questions and examining Logan. He decided to refer us to "The Melmed Center," in Scottsdale. Assuming this was the best solution (and really our only option) we scheduled with the Melmed Center. After several "hefty" (out of pocket) expenses for evaluations by different therapists and pychologists, we finally received their reports and Logan's diagnosis. Their reports said things like, "Logan falls far below... is severely delayed...." and the diagnosis was: Autism.
"I need thee every hour, stay thou close by..."
We were devastated. It felt like a ton of bricks. I was angry, confused, and fearful. The more I thought about it, the more I started to panic. I felt Heavenly Father had seriously overestimated my ability to be a mother. How could He think I could handle this? After filling my mind with fear for our future, I began to pray. I was again praying to Heavenly Father about the concerns I was having. I needed His help, His comfort. I knew with this diagnosis, we could begin to seek help for Logan. But it was devastating and heartbreaking to learn that our son would have to struggle with this burden. To know that this trial would be with our baby for his entire life.
"Fear not, I am with thee; oh, be not dismayed, for I am thy God and will still give thee aid. I'll strengthen thee, help thee, and cause thee to stand, Up held by my righteous omnipotent hand."
After praying for a long time, I found relief about our situation. And after praying, and felt impressed to read in the Proclamation To The World. I found that " All human beings- male and female- are created in the image of God. Each is a beloved spirit son or daughter of heavenly parents, and as such, each has a divine nature and destiny. That "spirit sons and daughters accepted His plan by which His children could obtain a physical body and gain earthly experience to progress toward perfection and ultimately realize his or her divine destiny..." That "Children are an heritage of the Lord. Parents have a sacred duty to rear their children in love and righteousness, to provide for their physical and spiritually needs... In 1 Nephi 3:7, Nephi said unto his father, "I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them." Nephi was faithful because he knew that the Lord would not give him a commandment without a way for him to accomplish it. I knew that we were commanded to care and raise our children in righteousness. And I knew that we were commanded to provide for Logan, for his needs. But I was reminded that through the struggles we will face, Heavenly Father with be with us- with Logan. That through our diligence in providing for our children, we will be blessed. After prayer, searching the scriptures, and words from the prophet and his apostles, we found comfort and peace.
So, then what is Autism? I remember briefly stumbling upon a quote from Dr. Jerry J. Kartzinel, MD,FAAP where he said, "Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life's marrow out of the family members, one by one. It relegates every other "normal" thing to utter insignificance. Inevitably, the question bubbles up through the muck: "What do I do with my anger, my pain, my frustration, and my grief?" I was floored. Logan wasn't "sucking life's marrow out of our family." He wasn't affecting our ability to function as a family. It was right then and there that I decided how my additude would be going into this. That when Autism brings challenges to our home and family, we will not allow it to rule our ability to parent, to think, to live, or to love.
"Come, little child and together we'll learn of His commandments, that we may return home to His presence to live in His sight."
I learned that the "spectrum" of severity with Autism is very broad. That there are those who are severly afflicted, and need institutional care. And there are also those who are only mildly touched with the disorder- like our Logan. Autism is a disorder that affects one in one hundred and fifty children. These children have problems with language development and usage. The have repetitive behaviors, and have problems understanding how to interact socially. Children with Autism don't make eye contact in the same way normally developed children do. They won't always smile when they're supposed to, or cry. They can be hypersensitive to lights, sounds, or touch. They will spin, flap their arms and legs, and "toe-walk." They have very little "original speech."
We found it fascinating that Logan could recite whole episodes from his favorite shows (now he can recite whole movies like"Shrek" and "Kung Fu Panda") but he could not say a complete sentence of his own. Many would think a three-year-old could easily say, "Please," but he couldn't. I remember the first time Daniel and I started "making Logan work" to tell us what he wanted, or to start saying, "Please." We knew exactly what Logan wanted, and we were no longer going to give into him. We went to fill his juice cup and instead of giving it back, we bent down to his level, and asked him, "Please?"
"Say please, Logan." He looked up at us and started screaming. A few minutes in, he started throwing a fit like no-other. It was hard to see his frustration- I wanted to give in! But Daniel reminded me that we were pulling him out of his comfort zone, and He just DID NOT like it. We had been keeping his world just the way he liked it; we had done everything for him. I finally understood. "Please. Say Please." Finally forty-five minutes later, our poor Logan choked out a quiet, "Peese?" It may not have sounded like "please" to anyone else, but we knew it did to him.
Sometimes you can't help but lose your patience. Every mom can lose her temper when her child starts to irritate her, but when you have an autistic child, sometimes you need dig even deeper to find the patience and keep you sanity. Especially when you're listening to the "repetition." Logan would quote phrases from different books and shows and repeat them over and over again. His first was the chant the fish do in, "Finding Nemo." He would repeat "Ah oo wa ee ah oh oh oh, " and keep repeating it until we said the exact sentence back to him. I would have to say, "Ah oo wa ee ah oh oh oh, " and then he would stop. If I responded with, "Yes, Logan, I heard you," he would keep saying, "Ah oo wa ee ah oh oh oh, " until I said it, too.
"And he took their little children, one by one, and blessed them, and prayed unto the Father for them." (3 Nephi 17:21)
One thing Autism has taught me is that you should never try to compare your children to each other. I used to find myself thinking back to when Aiden had hit each milestone, what age he was at each time, and then comparing Logan to it. I was disappointed that Logan could not say my name. He was two and a half, and had not said "Mommy" yet. And the more I would think about it- the more frustrated I became. I am grateful to tell you, prayer has softened my heart. And it was so worth the wait. In August of 2010, Logan had woken up from his nap. I opened his door, walked over to his bed for our "snuggle-time." Logan looked up at me and simply said, "Momma." I couldn't believe it! I bent down to Logan's level, and he said it again. "Momma." I grabbed my baby and held him in my arms. In that moment, the Lord had sent me His warm, peaceful Spirit. I felt His love. I realized that Logan's autism was not a burden. This was not a trial, it was a blessing. I began to understand how much faith Heavenly Father had in me as a mother. He had trusted me with this special spirit- our son. His son. I knew from this experience, that Logan would humble me, help me to learn compassion, and help us become more like our Heavenly Father. When I see my children as the Savior does, He opens my eyes to a clearer vision of how precious they are, how truly lovable they are. So, what an honor it is, for Daniel and I to be blessed with one of His choice spirits.
I was reading a book about how mothers can use spiritual power to raise their children, when she spoke about Ether:
"What will ye that I should do that ye may have light in your vessels?" (Ether 2:23)
My answer to the Lord's questions would be, "Please bless my children throughout their whole lives. Help them have good examples to teach them, good teachers, good Primary teachers, and good friends. Help them be safe, and to be away from danger. Bless them that they are healthy and strong and happy. I realized that these are all things I have little control over. But I remember what the brother of Jared said when asking for light and safe passage. "Suffer not that they shall go forth across this raging deep in darkness." (Ether 3:3) He prayed for light. When I thought about light, I remembered the scripture. "Let your light so shine before men, that they may see your good works, and glorify your Father which is in Heaven." (Matthew 5:16) So, if I ask the Lord for His help, and ask that He make me a light to my children, then they will be blessed just as I asked. I can light my childrens way through this raging and sometimes very dark world. That is a very real comfort to me.
"When the days are gloomy, sing some happy song; meet the world's repining with a courage strong. Go with faith undaunted through the ill's of life; scatter smiles and sunshine over it's toil and strife."
When we recieved Logan's diagnosis, and I was glued to the phone with coordinators, pychologists, therapists, different agencies, I was immediatly burdened with guilt from my new unbalanced life. Trying to give Logan everything he needed while staying consistant to Aiden's needs. There have been hard days, and really hard days. But I can say, that it does eventually get easier. Logan may still have autism, there may still be challenges- some short-lived, and some for the remainder of our lives. There may still be people, so... many... people, who feel the need to share their opinion on how THEY think we're doing. But it does get easier. We know we are so blessed, and we are truly happy. I know I am unlikely to experience never-ending joy in my mothering life, but I can embrace the happiness that comes our way. This life is a test and Heavenly Father wants to help my family; to bless us. I understand His promises more clearly now, more than ever before in my life. And what better way to thank Heavenly Father than to strive to do my best. Strive to create the most meaningful, joyful life I can as I raise my children.
Motherhood may be the most challenging thing I will ever do in my life. And I am forever grateful for the knowledge I have been blessed with, for the opportunities I have been given to gain experience and perspective. "...I give unto men weakness that they may be humble... for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them." I am grateful to know I am blessed, that Heavenly Father knows me, and He loves me more than I can comprehend. I am grateful to know He has planted me right where I need to be to grow. It has brought me comfort as my struggles and trials have come and go. I am grateful that as Daniel and I raise our children in righteousness, we have seen, and will continue to see the fruits of our labors. We have seen our children grow, and learn how blessed and loved they are. I am grateful to know that Heavenly Father answers my prayers on His time. Like I'm a squirrel, but instead of storing nuts for the winter, I've stored "blessings" for the "future," when I REALLY need them.
"Adam fell that men might be; and men are, that they might have joy." (2 Nephi 2:25)
I am so grateful for my husband, Daniel, and honored to be his wife. He loves me, really, truly loves me, and has brought more love and more happiness to my life than I could ever have imagined. He has shown me what pure joy really is. I am blessed everyday for Daniel in my life. I am so grateful for the honor of being a mother in this life, and grateful for the sweet lessons my children teach me each day. They remind both of us of the true reason we have come to earth. Our children are a blessing from Heavenly Father. I know looking to the Savior for strength has made all the difference in my daily life. So yes, raising a child with special needs takes faith and patience. Raising any child will try our patience and faith. But my children give me back more love than I could ever ask for.
"Yea, they had been taught by their mothers." (Alma 56:47)
