A Plan Set in Motion – Sunday Stilwell {special needs}

{new here? this post is part of a series on special needs. read here for more info.}
Sunday blogs over at Adventures in Extreme Parenthood, but I really know her from Twitter.
Where her tweets are a mix of sarcastic humor and a constant advocacy for special needs and particularly, autism.
She’s a good mama.
You can tell.
Read more about her journey:

When I was 19 years old I cared for a young boy with profound autism.

I was in my first year of college and I wanted to be a social worker. I envisioned myself caring for widows and orphans, supporting teenage mothers, and giving hope to those suffering with alcohol and drug additions.

More than anything I just wanted to make a difference.

I remember the campus job clerk calling me and telling me about the babysitting job. She said that it had been around for quite some time and had been turned down by a number of students in the social work department. Apparently no one wanted to take on the responsibility of caring for a child with autism.

No one, that is, except me.

I met with Alex’s mother and spent some time with her son. Alex was 10 and non-verbal. He still wore diapers and I remember his mom being unsure of how to ask me how I felt about changing diapers on a 10 year old boy. I am sure she was scared I’d run out of there so fast her head would spin. But I told her I couldn’t imagine it was much different from changing a two year old’s diaper. I was both right and wrong.

Alex had a number of behavioral issues which were typical of his diagnosis. He was prone to self-injurious behavior. Particularly when he wanted or needed something but lacked the verbal ability to tell someone. He would bang his head on walls and furniture and made rapid movements with his arms. His only comforts seemed to be watching Blues Clues and eating popcorn. We did a lot of that in our afternoons together.

Alex taught me about patience and persistence. When our time together was over and his mother returned to working from home I remember telling her that I didn’t understand why no one else had taken this babysitting job. I told her that Alex was amazing and I thanked her for the opportunity to care for him.

Fast forward 10 years and I was most assuredly not working as a social worker. In fact, I only lasted two months in college before dropping out.  I moved around a lot after that and eventually made my way to the East coast, married, and in the winter of 2003 I had my first son, Samuel.

Sam was not an easy baby. Not by a long shot. From birth he seemed to struggle with most everything. He had an overactive gag reflex and an under-active suck reflex which made breastfeeding him very difficult. He almost never napped and most days I was awake with him for 15+ hours a day praying he would fall asleep easily that night. He didn’t like to make eye contact and would stare at the television for long moments in which he would stop responding to my voice and my attempts to gain his attention.

When he was 12 months old I asked his pediatrician if he might have autism. She assured me that while he was delayed in a number of areas he was probably just a little behind and would most likely catch up by his next checkup at 18 months. He didn’t.

When Sam was 16 months old I took him to a new pediatrician after a series of horrible ear infections. It was at that appointment that I brought up my concerns about his lack of developmental milestones. I remember telling her I feared he might be autistic. Instead of patting my hand and telling me not to worry she wrote down the name of our county Infant and Toddlers program and gave me the name of a Developmental Pediatrician.

Sam was 18 months old when he was diagnosed with severe autism. Cognitively he was operating at the range of a two month old. I asked the doctor if autism was genetic? Was this something that future siblings could also have? He said there was not enough information to say yes or no. There was still so much research that needed to be done.

I left the doctor’s office feeling sick. Sick over being told my beautiful boy was autistic and worried because just the week before I held a stick that told me I was pregnant.

It was at this exact moment that I remembered Alex. 

It had been years since I had thought about him. Remembering his squeals of excitement when Blues Clues came on the television, how he would jump up and down and flap his hands as the popcorn popper came alive, and how most days his own little world didn’t always seem like such a bad place to be.

I saw God’s plan come full circle.  Alex had been a stepping stone.  A divine appointment.  God brought a young boy with special needs into my life to lay the groundwork necessary to teach me firsthand what autism is and what it most certainly is not.

I can’t say that I would have weathered Sam’s diagnosis and those early months of therapy with as much grace as I did if it had not been for Alex and the lessons he taught me.  I threw myself into reading everything I could get my hands on about autism and possible therapies that would help Sam communicate his needs to us.  I started learning sign language.  I bought toys that were not just fun but held a deeper purpose of being therapeutic.  I learned to “brush” Sam to help alleviate some of his adverse reactions to touch & other physical stimuli.  More than anything I tried to take it a day at a time and to focus on the milestones he did reach without lamenting over those he didn’t.

When Sam was 26 months old I gave birth to his little brother, Noah.  Noah was the yin to Sam’s yang.  He was night and day different from his big brother.  He slept through the night at six weeks and would go down for his naps easily and without effort.  He met all of his developmental milestones right on time, if not early.  I commented often that it was such a relief to raise such an easy-going baby after the struggles we went through with Sam.  For almost two years Noah was my bright light.  When I walked into the room his eyes would light up and his smile would almost explode from his face.  He loved to play peek-a-boo and his calls for Mama would make my heart leap.

That is, until he stopped.

By his second birthday Noah had completely retreated into himself.  He no longer made eye contact, responded to his name being called, or wanted me to hold him.  Two months later he was diagnosed with severe autism too.

Noah’s diagnosis was much harder for me to accept.  On the outside I did all the same things I had done for Sam.  The same therapists who had come into our home to work with Sam were now ringing my doorbell to work with Noah.  I juggled their therapy schedules and doubled my efforts in learning sign language and using Picture Exchange Communication Symbols (PECS) throughout the house.  But inside I was crumbling.

I never thought this would be my life.  I had not visualized myself as a mother of two children with a severe developmental disorder.  I had dozens of questions I did not know the answer to and would most likely never know the answer to and that made me angry.  The problem was I didn’t know who to be angry with.  God?  Genetics?  In the end I was left feeling royally pissed off at life in general.  I didn’t want my sons to grow up “different”.  I didn’t want to have to stomach the stares, eye rolls, unsolicited parenting advice, and ignorant comments of family, friends, and the general public.

In the years since Noah’s diagnosis I have found peace in places I never would have imagined.  My marriage to Sam and Noah’s father ended in 2008.  Most would think that the difficulty of raising two children with special needs was the culprit but they would be wrong.  We both grew to be vastly different people with different lives.  Today I am pleased to call their dad my friend.  We have an amazing co-parenting relationship and we are both pleased to say that our divorce had not adversely affected the boys.  In the midst of our divorce they have flourished.

In 2008 while attending a divorce ministry at my local church I met a wonderful man named Mike.  We were married on September 9, 2009 and he has embraced life as a “bonus daddy” to my boys.  I, too, have been blessed with two more sons, David and Mikhail, from Mike’s previous marriage.  Our family is busy, sometimes chaotic, but always rooted in unity and love.

My faith in God in the midst of these struggles has not only persevered but flourished.  Everyday I thank God for the lessons He gave me and for the angels He brought into my life in the exact moments I needed them.  When I thank God for these angels I always have Alex at the top of that list.  He taught me more in two months than I could have ever learned sitting behind a desk and for that I am eternally grateful.

The greatest lesson autism has taught me is selflessness.  I have learned without a doubt that this world is not about me.  This world is about our children.  All children of all abilities.  It is about giving of yourself for others.  Both those that you know in your community and those you may never meet on this side of heaven.  Raising my sons is teaching me to be a better person.  To not take everything you see at face value.  Its about digging deep and finding peace in the midst of the chaos.  Life is about making a difference.

Which is why I support a number of ministries that help make a difference in the life of those with special needs.  One such organization is Free Wheelchair Mission.

Their mission is quite simple…to produce thousands of wheelchairs for the millions of people across the world who do not have one.  The most amazing part is they can create one wheelchair for only $63.94.  The fact is I spend that much (if not more!) on dinner for four at a local restaurant.  But for someone living in a third world country that money it is the difference between a life bedridden and one of endless possibilities.

I hope that you will prayerfully consider making a donation of any amount to Free Wheelchair Mission.  I know the stories and photos on their website have touched me and motivated me to help in any way I can.  I am sure you will feel the same way.

* * *

With each series, we also fundraise for a related charity.
While the pairing of Free Wheelchair Mission, may on the surface seem unrelated to a post about autism, the truth is that it’s about resources.
When Sunday described the therapy that showed up to her front door…it was just a given.
It was what was going to happen.
It was part of the new plan.
There was no question.
Because we are blessed with resources.
And there are millions who aren’t.
Providing a way to get those sweet faces up and off the floor…restore their dignity…give them a sense of value…I can’t think of a better pairing for a series on special needs.
Please consider helping.
I dare you to give $1.
Double dog.

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I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.

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  1. 1

    Sunday, thank you for writing your story out and posting it here. What a blessing it is that you met and cared for Alex, and what an important part of your story!

    I’ve never heard of the free wheelchair ministry, but I will go check it out. Now.
    Great post!

  2. 3

    I didn’t hesitate. I just donated $20. I wish I could do more, I wish I could do all. Your post has touched me deeply, thank you for sharing. God bless you and your amazing boys.

    • 4

      I feel the exact same way, Nellie. I have donated to the ministries here on LR before and I always wish there was so much more I could do. But truly ever bit counts! Thank you so much for reading, commenting, and giving!

  3. 5

    Sunday–Thank you so much for sharing your story. My oldest son (5 in a couple of weeks) is on the spectrum and for awhile we had concerns for our youngest (just turned 2–has developmental delays but not autism.) I can completely resonate with your experience. It’s hard, very hard, but worth it. I am so pleased to hear that you now have a new hubby and “bonus daddy” for your boys. God is good even when life doesn’t seem to be! Blessings to you and your sweet family!

  4. 6

    Sunday- this is a beautiful life story! Thank you for sharing!!! I feel similarly about my son (3 years old w/ autism); it’s not so much that I had previously had experience with autism to prepare me. More so about God’s plan, divine workings etc… While I was pregnant with Kekito I felt God telling me that he would have autism. I told my mom and husband I felt like God was preparing me for that. They thought I was paranoid. I tried to explain it wasn’t that I was WORRIED that he would be, but more so that I KNEW he would be. It helped because I was LOOKING for every sign from day one. I caught it EARLY and got help. Even so, I know that however much progress we’ve made was by the grace of God. I think though that God knew I needed the heads up. I’d have probably not noticed as soon and probably would have freaked out otherwise. Knowing more than a year ahead of my first concerns made a big difference in how I swallowed it. And dealt with it. Like you, it has only further solidified my faith in God. I have struggled with the why’s and guilt. But I see how God has used it to paint beautiy into my life. A friend asked if they “found a cure” would I “cure” him? I told her honestly, no. It’s a HUGE pain in the ass to deal with on some days. :) I feel guilty often. But it is WHO he is. It is a HUGE part of THE person I have grown deeper love for everyday. If they “found a cure” I’d let him decide on his own when he was older. Of course, as things are now, we do therapy stuff but, with the intention of helping him better enjoys his days here on earth. I will check out the wheelchair foundation! Thank you for the beautiful story!

  5. 7

    What a beautiful touching story about how God used Alex to prepare your heart to be an amazing momma to your two beautiful boys! Thank you for sharing your story here as a reminder to us all of the fact that God ALWAYS knows what he is doing. Even when we question that at the very core of our being.

  6. 8
    Mike Stilwell says:

    I can’t imagine my life without Sunday,Sam, and Noah… I just hope I can be the husband and stepdad y’all deserve! #teamxtreme