As a mother of an autistic boy, I feel so blessed to have the inside look at such a brilliant mind. If you have not had the privilege of being close to or around someone with autism, you are truly missing out. If an individual is willing to step out of his/her comfort zone and just quietly observe/love/get to know an autistic young lady or gentleman, he/she would find that they truly have so much to teach us.
With help from Jagger’s various therapies and many many books on autism, I have begun to have a clearer understanding on how Jagger is experiencing the world and what life might be like for him. Lately there are many days where it feels like raising an autistic boy is no more challenging than raising my 2.5-year-old little girl in our home. They definitely both have their unique struggles and both require a lot of my energy for different things but Jagger has his routine and as long as we stick to it, most days are pretty smooth. The hard part for me seems to be connected to everyone and everything outside of our home. It comes with all of the factors and situations I cannot control. It comes when the rest of the world, the school system, neighbors, or friends do not care to look beyond the surface of “strange” behaviors and expressions to really see the special human being standing in front of them. I am constantly stressed and paranoid about how Jagger is being treated by teachers, therapists and peers when I am not around.
I am always praying that they can see with their hearts instead of their eyes, and treat Jagger like the royalty he truly is.
Today I was especially curious about how my little boy was doing at his preschool. It’s been 3 weeks since we moved from California, and this is the first time Jagger is in a school without an aide helping to keep him on task. I have been a nervous wreck, daily! We had a really rough night of sleep, and an even rougher morning trying to get out the door, so after I dropped Jagger off I stayed to observe just a little bit. He seemed to do okay in his little class. I am grateful that the teacher is a sweetheart who truly loves him. When she would ask questions though, Jagger would just look down, or would be staring off into the distance, and it made my heart hurt. He is so smart, it hurts to see him disengaged or overlooked sometimes. Next he was off to recess. I quickly got Jovi in the car and we slowly drove around the corner so that I could just watch him from a distance, like the creeper mother I truly am. The scene I saw just shredded my heart. Jagger played next to many of the kids for a while, but never quite got in the circle with everyone. They seemed to all click so naturally and move so quickly, it left my little boy awkwardly standing and watching from the outside. After a while of just watching the other kids play and following behind, Jagger eventually grabbed a ball and started shooting it in the basketball hoop by himself. He stayed alone in the corner of the park until recess was over.
This was WAY too much for my mommy heart to bear and I began to sob.
I was crying so hard I couldn’t see and my sweet little girl was sitting in the back seat saying, “Don’t be sad mama. Don’t be sad!” I had to stop myself from jumping out of my car, hopping the fence, and swooping him up in my arms to make him laugh. I wanted to rally those little kids together and play monster, a game Jagger excels at so that they could catch a glimpse of the fun-loving, good-natured, sweet boy I know so well at home. I had to drive away because two little girls walked up to the fence closest to me and started pointing at me. I knew they were alarmed by my ugly cry and swollen face; I knew I looked like Sloth. I only made it a short distance though before I pulled over again and ugly cried a little bit more.
Oh how I ached for Jagger! It pained me so that I cannot take this burden from him or walk alongside him in these solitary situations. I have never experienced the kind of pain that starts in my heart but spreads all the way down to my toes, and I realized that this is the kind of aching that only mothers feel for their children. I couldn’t do anything for my son, and I all I kept thinking was,
“Is this what the rest of Jagger’s life is going to look like? Is this what the rest of MY life is going to look like? Am I always just going to be this mom who creeps around, hovers, and cries so hard that I scare little girls??”
I began to panic, and started to become completely overwhelmed by the thought of this. I quickly began to fall into a dark hopeless place. I felt like there was nothing to alleviate the pain I felt. I even began to feel physical discomfort from this hurt inside me that had nowhere to go. It just sat in the middle of my chest, weighing me and my faith down.
Shortly after this I began to utter an angry prayer.
Why
was I given this torturous trial of just having to watch my little boy struggle day in and day out? Why give me a trial that ultimately I have no control over or power to cure? The thought of feeling this way for the rest of Jagger’s life just seemed absolutely unbearable to me, and I thought, “Lord I can’t do this. I can’t sit by and watch him be misunderstood, mistreated, and lonely for the rest of his life.
WHY WOULD YOU GIVE ME A CHALLENGE I CANNOT FIX?”
As the day wore on I had a lot more time to think, and an old story came to my mind that I hadn’t heard or told since I served a mission for my church in Russia years ago.
This was a story we used to tell people when teaching them about trials. Though it’s been years since I was in the snowy cold tundra of Siberia teaching curious Russians about Jesus Christ, the imagery of this short story has always stuck with me, and it seemed to come to my remembrance at the perfect moment. The short story is this:
There once was a man who was asleep one night in his cabin when suddenly his room filled with light and the Savior appeared to him.
The Lord told him He had a work for him to do, and showed him a large rock explaining that he was to push against the rock with all his might. This the man did, and for many days he toiled from sunup to sundown; his shoulder set squarely against the cold massive surface of the rock, pushing with all his might. Each night the man returned to his cabin sore and worn out, feeling his whole day had been spent in vain.
Seeing that the man showed signs of discouragement, Satan decided to enter the picture – placing thoughts in the man’s mind, such as “Why kill yourself over this? You’re never going to move it!” or “Boy, you’ve been at it a long time and you haven’t even scratched the surface!” etc. giving the man the impression the task was impossible and the man was an unworthy servant because he wasn’t moving the massive stone.
These thoughts discouraged and disheartened the man and he started to ease up in his efforts. “Why kill myself?” he thought. “I’ll just put in my time putting forth just the minimum of effort and that will be good enough.” And this he did or at least planned on doing until, one day, he decided to take his troubles to the Lord.
“Lord,” he said, “I have labored hard and long in Your service, putting forth all my strength to do that which You have asked of me. Yet after all this time, I have not even budged that rock even half a millimeter. What is wrong? Why am I failing?”
To this the Lord responded compassionately, “My friend, when long ago I asked you to serve Me and you accepted, I told you to push against the rock with all your strength and that you have done.
But never once did I mention to you that I expected you to move it.
At least not by yourself. Your task was to push. And now you come to Me, your strength spent, thinking that you have failed, ready to quit. But is this really so? Look at yourself. Your arms are strong and muscled; your back sinewed and brown. Your hands are calloused from constant pressure and your legs have become massive and hard. Through opposition you have grown much and your ability now far surpasses that which you used to have. Yet still, you haven’t succeeded in moving the rock; and you come to Me now with a heavy heart and your strength spent. I, my friend will move the rock. Your calling was to be obedient and push, and to exercise your faith and trust in My wisdom, and this you have done.”
After reading this story again, I remembered some truths that I had allowed doubt to silence. The Lord doesn’t ever give me more than I can handle, though it doesn’t seem so at the time. I know that there is a purpose behind each and every suffering I endure in this lifetime. I was reminded in this story that though I don’t understand Heavenly Father’s ways, and why I am afflicted with certain problems that are out of my control, He knows the best obstacle to give me to make me stronger and learn. It may not be revealed to me until after this life what part of me has been strengthened, fortified and refined, but I can have the faith and confidence in the present moment that this is all part of a spiritual boot camp educating and sculpting my soul.
As for my sweet son Jagger, I was pouring my heart out to my husband about this whole experience. We were laying side by side about to go to sleep, and I felt grateful to be able to share my burden with my best friend, the only mortal person who could feel exactly as I feel for Jagger. Zach paused after listening to me cry and started to say something. I only caught the first part of his sentence, but it was enough to fill my whole body with light and hope. He said, “When the Savior puts His hands on Jagger’s head and heals him…” I immediately had the most beautiful picture of this in my mind. What a glorious time that will be! It was like my newly enlightened mind suddenly remembered that this mortal hardship we are experiencing right now will truly only be for a moment until the Savior will make it all right. I felt all of that pain and burden that had lingered all day suddenly disappear and leave my body. The rest of our lives didn’t seem so long or bleak anymore. Jagger will be healed one day, that is a fact, and on that day I bet we will look back on this time with appreciation for all it taught us. I have a feeling that after the Savior heals the children, He will take time to heal the mothers too.
This renewed my energy to greet the upcoming days with gratitude, perseverance, and a steadfast determination to kick this monstrous, painful, awful tribulation in the head.
I resolved to NEVER let the bad days rob me of my eternal perspective again.
If you are feeling overwhelmed by your problem or challenge right now, hang in there. This life is nothing compared to the eternity that awaits you. You got this.
“…Peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;
And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all…” Doctrine and Covenants 121:7-8
Emilee Floyd
September 14, 2017I don’t know you very well. We met briefly in Middleton. This is the first post I’ve read and I loved it. My heart hurt with you but it also felt joy in the light that you experienced. I have a son who has some struggles and this gave me insight in how to better cope and be more gentle with him. Thank you…
alyssaleolani1@gmail.com
September 18, 2017Emilee thank you for writing this sweet response! I really appreciated it. My heart goes out to you and your daily struggles with your child as well. It is so nice to know there are more moms struggling with the same thing so we can draw strength from each other and not only survive our days, but figure out how to enjoy them more and help our kids. I hope to hear more about your child, come back again please!
Iris Zamora
September 14, 2017My dear Alissa Leolani, thank you for sharing with the rest of the world your experience and your feelings, I remember you as a little girl, you have grown to be a wonderful and merciful daughter and mother. Your experience will help so many, I know someone and have the privilege of helping a prince grow to his potential. May your life continue to be blessed and hope that when you receive your reward I too can witness that. Bless you for you have voiced what many mothers with prince and princesses like your Jagger, have every day. Remember that short story my husband told me in Regi Park
alyssaleolani1@gmail.com
September 18, 2017Wow I am so grateful for modern technology and social media so that we can stay connected even though I haven’t seen you since I was a little girl. Thank you so much for the love and support. I like how you called these precious children princes and princesses, you are spot on! I’m so glad you stopped in with these kind words of encouragement and love. I hope you and your family are doing well, and I hope to hear from you again!
Nayomee
September 14, 2017Our Sunday school teacher says that “god wont give you more then you can handle” is NOT true. People should say “God won’t give you more then you can handle without his help!” We must rely on him to help us through. We can’t do it alone. I loved this post girl. You are so strong and amazing! I know that Jaggar chose you for that reason. 😘
alyssaleolani1@gmail.com
September 18, 2017Nayomee I love your added insight! As soon as I read it I thought, “yes that is so true!” When I am not relying on Heavenly Father, I feel like I am going to break and that it IS too much for me to handle. I just can’t do it on my own. Thanks so much for stopping in and reading this and giving me this profound insight. And thank you so much for the kind encouragement, I love you! I hope to run into you one of these days since we are back!!!
Katt
September 14, 2017After reading this I know exactly why Heavenly Father sent Jagger down to you. You truly are the best, most thoughtful and loving mom. God knew you’d love and care for Jagger as much as he loves and cares for him. I’m also willing to bet that he feels the same about you as you do for Jagger. Watching YOU suffer from a distance can’t be easy for Him. I know he’ll help you get through this. Just keep pushing on that rock. <3
alyssaleolani1@gmail.com
September 18, 2017Oh my dear friend I just miss you! Reading your response made me feel like we were back at Panera Bread or Costco talking about life. It’s always a real and warm conversation whenever we get together. Thank you for your love and encouragement ALWAYS! You keep pushing that rock too!
Belinda
September 16, 2017Hello Alyssa.
Thank you for sharing.
Hugs from Belinda
[Eddie’s mum😉]
alyssaleolani1@gmail.com
September 18, 2017Hi Belinda!! Thank you for reading this article and stopping in to say hi. We love our home ward family always. I hope that you and your family are doing well!! We miss seeing you guys around!
Rebecca Ng
September 17, 2017Hey Alyssa,
It’s so creepy to write a comment on someone’s wall you don’t know– but I honestly have faith I’ll meet you in person some day & we’ll be instant best friends. Coincidentally- my husband, Tim, served a mission in Hong Kong with one of your sisters (Victoria, I think?) and I have the same job as your other sister Lauren in the Bay Area– thank goodness for her posting a FB link to your blog! After meeting so many ASD parents, I’m learning it’s hard to find someone like your child on the spectrum–and Jagger sounds a TON like my 2-year old Hugh who was recently diagnosed with Autism. We’re a bit behind you in terms of figuring things out & getting a therapy system in order, but just know that I’m reading your posts & will probably continue to comment if you’re okay with it =). Both of your posts have made me bawl; mainly because I feel like someone finally understands (and seems to view/cope with situations the same as I do)& also because I feel incredibly blessed you’re finding time to post & that I found this blog at the beginning of this Autism battle. One quick question: the last 2 books I’ve ordered to try & start to understand Hugh’s world have been a big as some of my college textbooks, and I’m feeling daunted in applying myself to them since I don’t know how helpful they’ll actually turn out to be. Do you have some you would highly recommend to get me started? That’s it for now– but I’m sure you haven’t heard the last from me 😉
alyssaleolani1@gmail.com
September 18, 2017Rebecca! I am so glad you found me and that my posts comforted you! I specifically started this blog thinking about moms who felt as overwhelmed and scared as I did when I realized something was developmentally wrong with my child. I scoured the internet for days and didn’t seem to ever find anything comforting so I wanted to be a voice of comfort and strength to other moms. Holy cow small world, we totally were meant to be connected! I can’t believe you guys know my sisters!!!! So yes we probably will meet one day I am sure of it! Ok I am your girl and since I just moved from California, I feel like I have more insight on services in California. I am going to give you my brief version of what we did and what you could do, and give you some amazing book suggestions. Have you heard of the regional centers? These are centers set up all throughout California where you can go walk in and say hey, there is something going on with my child. You don’t need any kind of referral from a doctor. Contact the one in your area and let them know what is going on. They will conduct all kinds of evaluations for your child in all developmental areas, then they provide some great starter therapies for your child for free. We started there and Jagger was eligible for speech 2x a week and an early intervention class 3x a week. It was really helpful to get the ball rolling. Then after 3 years old, if your child has the ASD diagnosis he remains a client with them until he is 18 I believe, maybe even for the rest of his life. That’s a great starting point! Message me after you do this, and I’ll help you with the next steps of what we did that completely altered Jagger’s development and path. I would be more than happy to help you!! Okay great books to start with: Autistic Logistics by Kate Wilde, 10 Things Every Child with Autism Wishes You Knew by Ellen Notbohm, The Reason I Jump and Fall Down 7 Times Get Up 8 by Naoki Higashida- these 2 were written by a severely autistic nonverbal brilliant autistic boy and his insight is incredible. Start with these books and I’ll dig up some more. These ones really helped me understand Jagger and look differently at his behaviors. Okay get my number from my sister Lauren and call me or text me! I want to tell you the therapies you want to get your child in right away! I am sorry if this is overload but I get really excited and anxious to help moms starting out on their journey!! And just so you know, it gets better. There is hope, our kids are brilliant they just need the proper teaching and therapies appropriate for their learning style and capabilities. You got this, deep breaths, take it day by day. You’re amazing! Call me!
Theresa Drake
April 25, 2018Alyssa, I knew your parents from CC2. My son Thomas is on the spectrum. He is 17 now and am utterly exhausted overwhelmed, etc… But this analogy is one I have been teaching my son and reminding myself of. As I struggle to make it through one more day, wondering if I am doing more harm than good. Thomas has Aspergers, Preston (15) is anorexic and just got out of his second stint of impatient, and a month ago we found out my daughter (14) was cutting. Oh and we have a 4 year old :).
You do write Beautifully. It is quite engaging. But what is really hard is getting people to understand kids with what I call invisible disabilites. There has been so much news of the Down Syndrome child being included in prom, a video or even made king/queen of the prom court. Which in of itself, is just fine. Progress is being made. But, since it is a disability one can see , they react differently.
When the disability affects their world view, a child who thinks outside of the box and asks different questions, reacts awkwardly, those are the ones left behind. Left out of group work, time and time again.
My friend believe his son (also autistic) chose this disability so he/we can become who we need to be. That is was a sacrifice they made before this existence. I am not sure how I feel about that. But it is quite humbling,
Thanks for putting yourself out there. God Bless