Autism
About 6 weeks ago we heard the term ASD (autism spectrum disorder) used in relation to our Mareto. Then it was a strong suspicion by a highly trained speech therapist. Today it was a diagnosis. A confirmation from a doctor who specializes in children with autism.
The last 6 weeks have been hard. A lot of changes have entered into our daily lives. Mareto is in therapy regularly and his little world is being rocked. This is a hard season – the initial part where everything in his system gets turned upside down so we can learn how he works and how to make life better for him. This is the part where everything is a battle and he doesn’t understand why.
Right now my days are spent in ways I never imagined. I sit on the floor in Barnes&Nobles in front of a bookshelf labeled “Special Needs Children” with a pile of 20 different books laying next to me. Books about autism, developmental delays, and sensory integration disorders. I’m trying to learn this new medical language that now suddenly applies to my son. I stay up until 1am reading about how I can best help him grow at home. I reorganize our living space and start labeling plastic bins ”sensory toys” and “motor development toys.” I swing him in the rocker for 10 minutes before every meal and pray that he’ll swallow his oatmeal. That whole “if they get hungry enough they’ll eat” opinion? Yea, doesn’t apply to children with autism. They won’t until you fix the main issue which for Mareto is his sensory system. Today’s appointment showed that he has lost some weight… not a lot, but he’s dropped nearly 20% on the growth chart for weight. We roll a medicine ball over his body and give him “squishes” before bed… praying it will calm him enough to give him the rest he needs. “They’ll sleep if they’re tired enough…” again, doesn’t apply to children with autism. If we don’t make it all okay in his little body – make him feel comfortable, safe, and secure – it doesn’t matter how long he’s been awake… he will not sleep.
So we read books, pray like crazy, ask lots of questions, and try new things… anything that will help. I try not to worry about how this will look 10 years down the road. I try my hardest to focus on the good no matter how rough our day has been. I am learning that it’s okay to give myself a break. I realize all of a sudden this means that I’m not a terrible mom… that no amount of discipline will change his quirky behaviors (in fact it could make it much worse). So maybe I’m doing an okay job after all. I’m realizing it’s okay if we need to leave church early or stay home from events. I take a nap a little more often… even if it means I have to sleep curled up in the crib next to my sweet boy so he feels secure enough to nap.
And I cry. A lot. These days my emotions are just ready to spill over at any given moment. It’s a lot for my heart to take in. I miss my daughter and that alone is enough to make a mama raw. But now I ache for my boy too. I wish things weren’t so hard for him. I wish the world made sense to him and that he didn’t get so overwhelmed, confused, and frustrated. I wish I could magically make it so that everyone in the world was educated about autism… so that we would never get judgmental glances and so that others wouldn’t automatically assume the worst of him. I can’t change these things though – but I can fight my hardest to get him the help he needs. I can work everyday at home to learn how he operates. And while crying doesn’t change anything … it sure does make me feel better sometimes.
At the end of the day he is still just Mareto… my sweet boy. The same sweet boy who stole my heart the moment I saw his picture for the first time. The same little boy who made us a family the moment I scooped him into my arms in Ethiopia. The same sweet boy who does things that make me laugh in delight and who hugs me tight every day. He is still my boy – my wonderful, sweet, smart, delightful little boy. I can’t wait to see what God is going to do in his life — because he is amazing. And at the end of the day… that’s all that really matters.
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(therapy in the “cuddle swing”)
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(throwing balls against the wall)
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(mama got to get in on the therapy this time!)
(ball pit therapy – waking up his sensory system)
(feeding therapy — lots of tears for this)
(newly organized toy area: motor development toys, sensory toys, music toys, cars, balls, pretend play toys)
(only being allowed to have one bin of toys open at a time makes for a much happier boy and more productive play time!)
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Christy - Oh sweet Lauren! Praying for you and the platform the Lord continues to give you. I know you are the perfect mom for him and will lead his little life to do great things!
Rebekah - Lauren- I’m so glad you finally have an answer! I’m sure that it was extremely difficult to hear. What a blessing that God chose YOU to be Mareto’s mama because it is clear that you love him and are working to make his home environment exactly what he needs to thrive. Praying for you!
Ginger Wade - Lauren,
I cannot begin to understand all that you’ve experienced, but I especially appreciate your heart and willingness to share with us. Thank you for equipping us to better pray as you live out His love through your testimony.
We are here learning and leaning with you.
Ginger
Amber - Oh Lauren! You all will be in my prayers! I’m sure it’s soo relieving to have answers, even if the answers seem too overwhelming to handle right now! What an amazing thing that we have so many more resources in our day and age. I have several friends that have children on the ASD. It’s been amazing to watch their journey from the sidelines and see their children thrive as they receive the help they need! ((hugs)) for you today!!
Angela - Praise God that you sought out help so early in your baby boy’s life. We have a nephew with Autism & early detection makes a world of difference. You are a terrific mom & God truly chose you because of your loving, giving heart
Kait - I don’t know that I’ve ever commented but I just wanted to come out of lurking today to tell you that as hard as this must be, I’m so glad you’ve been given a roadmap to helping your sweet boy.
Kelly - Oh Lauren,
I am so sorry you are going through this. I know how hard it is on a mama’s heart when your child is suffering. I am praying for you all as you go through all these changes! May God be the strength of your heart and soul.
Hugs!
Julie - Hi Lauren,
I’m also wanted to come out of lurking today to encourage you and let you know I’ll be praying.
I can relate in many ways to your post. My son came home at 9 months from Guatemala and is now 10 years old. He has PDD-NOS, ADHD and Sensory Processing issues. I didn’t get help as early as you did and can relate to feeling like you are doing everything wrong. We didn’t really get any good help until he was 5. There are still many days when I don’t think we are getting the help we need but I can see God at work.
God does have a plan and He is Faithful all the time!
Megan - Lauren, I am so burdened for you as you process all of this. I will be praying for you! I worked as an ABA therapist in a school for kids with Autism for a while before I had my son and I still do respite care for a family who has a son with ASD. The great thing is, you’re getting early intervention and you’re committed to helping Mareto. So many parents are in denial for a long time. Props to you for being so proactive and willing to dive into this world of special needs! Please feel free to ask me any questions..I am NO expert but have had some training in the field.
Jess - I have to admit, my heart sank for you when I read this. But then I started thinking of the goodness to be found here. First, this sweet boy has been chosen for you – to bring him out of an orphanage and to a place where he is loved and cared for and has access to some of the best medical care in the world. Second, as others have said, the early detection is so so so important. Those therapies and routines you are learning are going to make his growing up so much easier. Third, your acceptance of this. As a teacher, I see many parents taking the “bury head in sand” approach and while I understand it, your boy is going to get his needs met so much better because you guys are accepting this diagnosis and advocating for him. And last is prayer. This boy and your sweet Arsema and you and John and being prayed for by many of us who you’ve never even met! Those times when you’re at your wits end? Somewhere, someone is praying you through. Hang tight to that and hang tight to God!
Kristen - Lauren, You guys have been on my heart for a while now & I’ve been praying. Now more specifically.
Kristen - … and that published before I was done.
Praying for peace, the resources you need, and for the Lord to envelope you in his arms throughout all of this. ♥
*Ashley Lou* - My heart aches with yours but I know that you are dependent on God to give you the tools and your sweet boy will be EVERYTHING God has ordained him to be!
I’m linking a friend’s blog…many of these resources are not new to you (being that hard places and special needs often have the same experts) but it might be comforting (the same way it is in adoption) to find your support system of mommas who know EXACTLY how you feel.
http://tobringthemhome.wordpress.com/resources-for-special-needs-children/
Many prayers and much love as you walk this new journey.
*Ashley Lou*
Julia Haney - Sweet Lauren, This is not the end but more a beginning to understanding your little boy. With therapy and love it will be ok. My nephew is autistic and he has been in therapy. With therapy comes great things and great developments. I can already see you helping him so much.
Amy - Lauren,
I am thankful that you have an answer and that God has led you to a great team to work with Mareto. I can in no way comprehend what your heart is experiencing, but I know that you were meant to be Mareto’s Mommy. He is so blessed to have such a wonderful woman of God as his precious Mommy. Our family will be praying for your family. We love you all.
Love,
Amy
Christy - Oh Lauren…what a journey this has been… and continues to be. I am so thankful you now have some answers and that sweet Mareto is getting what he needs…I hope that you too get what you need. I am praying for resources, for the right people to come alongside you and John and Mareto, for things to come together for your sweet baby girl to come home, for peace and comfort as your process this with your raw heart.
You are strong. You are brave, you are one awesome Mom and your family is going to do amazing things. I cannot help but find it so fitting that you used that photo of Mareto with that shirt… He is going to change this world of that I have no doubt. <3
Shelly Moorhouse - It sounds like you are doing an awesome job! I know how it feels to feel like at any given moment the tears will spill over. Hang in there! I will keep your family in my prayers as you care for Mareto and long for Arsema.
Dave Klinetop - I don’t know what level he is but I have coached a little girl on one of my soccer teams that had autism and you will be amazed at what they can do. I know I was. I know with you all as parents he will be the best that he can possibly be. I know God will use you through this. I just wanted to offer encouragement to you all as you tackle this new challenge. May God bless you.
Dave
Recovering Lutheran - My wife and I have a son who has been diagnosed with autism. Up until the time he was three years old he rarely if ever spoke, and when he did it was pure gibberish. He had unusual sensory likes and dislikes – he hated (and still does) for anyone to touch his head or to hug him. He would spend many hours line up his toy trains in a perfectly straight line, and then just run back and forth looking at them (he seemed to get some sort of visual stimulation out of it). In preschool he would never interact with other children (and I do mean *never*), seemingly locked into his own universe.
It was still hard to hear the words when we were told he had autism. But it was something we knew in our hearts.
The local school district has an outstanding Special Education program, perhaps the best in our home state of Texas. From a almost speechless preschooler unable to do a lot of simple tasks other children his age could do, his teachers and therapists have helped him grow into talkative first grader (as I type this he is telling me with breathless excitement all about Thomas the Tank Engine and his various adventures in our home today). Our son has friends and spends most of his time in a regular classroom. He still dislikes being hugged, but that is probably just being a regular boy.
Having a child with autism is like being on a roller coaster ride you did not want to go on, but have no choice except to endure. There are times when we are almost giddy with delight at his progress, while at other times it is like staring into the very pits of hell (in my case, I am haunted by what will happen to him when we are gone and he must go through life without us). One thing I have found is that I do not have the time to affix blame for what happened – it is a luxury I cannot afford, and it is also gets me worked up over absolutely nothing. God has chosen what He has chosen, and I do not have the wisdom to second-guess Him.
We will pray for you and your son tonight.
David Fleeger
Amber - Lauren,
I am so glad you are finally getting some answers for your sweet boy. I have seen many children with ASD make amazing strides with good sensory integration therapy from the pediatric OT at the clinic where I work. I know God has amazing plans for Mareto’s life, and He chose the perfect parents to journey with him. Your family will be in our prayers!
Courtney - Oh Lauren, what eloquent, genuine words from a hurting mother’s heart. Praying for peace as you guys continue to trust in the Lord. Is. 26:3
Caitlin E - Lauren,
My mom is a pediatric speech therapist, and she loves her little guys with autism. Thank God for good therapists!
That picture of you getting in on therapy means there’s great hope for his diagnosis. Mom has always said, the kids that do the best are the ones whose parents are involved and willing to learn.
You are a great mom. And even with these changes, you will continue to be a great mom! Many prayers and blessings headed your way. Especially in this time of transition and waiting!
Sarah-Anne K. - Dear sweet beloved friend,
Thank you for sharing your heart with us. I ache with you, and yet I am so thankful we better know how to pray for–and with–you. Mareto is precious.
“Fear not, O Lauren and John; let not your hands grow weak. The Lord your God is in your midst, a mighty one who will save; he will rejoice over you [and Mareto] with gladness; he will quiet you [and Mareto] by his love; he will exult over you with loud singing.” Zephaniah 3: 16-17
Much love, dear one.
Sarah-Anne
Amy Pigg - Lauren, I served as an Autism Specialist in Madison,Alabama for a number of years. I recently retired and may have some resources that would be helpful for you to read and/or use with sweet Mareto.Also, the book and FB group Food Chaining may be useful for you with feeding issues.Please email me if you are interested!I would love to share them with someone in need of them!
Robin - Lauren- My heart just ached as I read your post. We have had those words said to us so I know how difficult it is to go to the appointments and then hear the news. We had the same philosophy as you. Our son was the same love of our life before the diagnosis and after the diagnosis. Please know if you have any questions I would be happy to tell you what worked for us. Praying for you all during this challenging time.