Shea’s Story {on being a single special needs mom}

This is day 20 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, one of my local friends, Shea, is talking about her unique situation as a single special needs mom.

I am blessed to be a single mom to a three year old son and a two year old daughter. My son was diagnosed with autism when he was 2 years, 2 months old and my daughter was 7 months old. Their father and I separated less than two weeks later and are now divorced. Many people ask if the diagnosis was the catalyst for our split, but it wasn’t. I knew Holden had autism many months before he was diagnosed; obtaining the formal diagnosis was simply the next step to help him get the Early Intervention therapies that he needed. I share this background to explain that being a single mom to two young children, one of whom has special needs, doesn’t make me a super mom. It’s simply all I’ve ever known, and I’m just a mom doing what it takes to be the best mom I can be to both of my children.

My son’s name is Holden, and he is an active, adorable, three-year-old. Holden loves to run, climb, and play outside and in water. He is currently non-verbal and experiences a great deal of frustration stemming from his inability to communicate his wants and needs. He loves to explore new places, loves live music and marching bands, and enjoys outdoor festivals, but has to be closely monitored in social settings as his frustration can sometimes lead him to act out aggressively. My daughter’s name is Harper, and she is an adorable, wise-beyond-her-years, precocious two-year-old, who is the BEST little sister you could ever imagine. Even though Holden often takes out his frustration on Harper, she is his best friend, his biggest fan, and his most loyal advocate. Harper doesn’t take a sip of drink, or a bite of food without asking “and Holden?”. She understands that “Holden not talk,” but also that she is his best friend and “I help Holden talk.” Their love and their bond is an amazing thing to witness.

As you can see, our family of three is beyond blessed! But we do have struggles that are unique to our situation. The major one that pops into mind is simply not having enough hands. I’m fairly petite and my kids are getting bigger by the day. We don’t let our limitations keep us from fun. My kids love to go! And see! And do! So, that’s what we do! We still use a double stroller (or an Ergo) for some outings, but for the most part, we now venture out without one. And having just transitioned into this milestone quite recently, there is so much freedom there! But… there are also some challenging moments. My daughter weighs around 28 lbs and my son around 50. Carrying one of them at a time, isn’t a problem. But when simultaneous meltdowns occur, it is literally all I can physically do to carry both kids back to the car… and Heaven forbid, the car is very far away!

That is a struggle that most moms can relate to – single or married. But what most people don’t realize is that when a child with autism has a meltdown, it is very different. A phrase I often hear in the autism community is, “My child isn’t giving me a hard time, my child is HAVING a hard time.” And that is SO TRUE. When children with autism have meltdowns – despite how it may appear to the untrained eye – they aren’t simply misbehaving. They are truly overwhelmed, overloaded and coping the best way they can.

I have always prided myself in being self-sufficient, but one thing I have learned is to take help when it is offered, even when it is offered by a complete stranger! As a single mom, with a 2 year old and a 3 year old with special needs, I have learned that there are so many truly KIND people in the world. When my son does have a meltdown, it isn’t uncommon for him to scratch, bite, pinch, pull my hair, etc. I’m grateful for fellow autism moms that I can laugh about this with. We often laugh with each other about how this must look to outsiders… here my child is scratching me/biting me/pinching me/pulling my hair, and I’m trying to comfort him and tell him that it is okay! To look at my son you might not know that he has autism, so I can only imagine the thoughts that must be going through strangers’ minds. But that is just an excellent example of why we should all be available to help others, whether we understand what is going on or not. We simply can’t begin to imagine another person’s circumstances. But if we have the hands and the heart to help them, what bad could possibly come of that?

I also struggle with the fact that Holden requires so much of my time. He isn’t verbal, and I am the only person he comes to when he needs things. So I struggle with being available for him 24-7 and yet still being fully available to Harper, at the same time. But surprisingly, Holden makes it easier for me. He is an amazing child. He will WAIT until I sit down, and the second I sit down, he comes and grabs my hand. I used to joke that he doesn’t like to let me relax, but that isn’t it at all! Can you imagine all of the things that you ask for, or want or need in any given day? Imagine not being able to verbalize those wants and needs. So instead of asking me for those things when I am busy doing other things, he PATIENTLY waits until he sees me sit down, and THEN he comes to me to ask me to help him. Talk about a change in mindset. When I didn’t understand autism, that would frustrate me. I was exhausted, and I would think, “Why does he not want me to sit down… ever?!?!?!” But once I began to see things through his eyes, I thought, “What an amazing and patient child… he has so many wants and needs all day long, but yet, he knows that I have so many things to do, that he waits until I’m not doing anything, and THEN he tells me all the things that he needs. Now if that isn’t an amazing, intuitive, caring child, I don’t know what is!”

So, yes, there are some unique challenges that we face, but I really love to focus on all of the positives. I love the opportunity to wake up every day and be responsible for creating our own happiness for the day. I love that my children have the opportunity to grow up in a happy home, free of anger and fighting. I love that I can take my kids anywhere and everywhere we want to go, without anyone telling me it isn’t a good idea, or that is going to be too hard, or it would be easier to do something else. The only limitations or arguments we face are the ones we choose to allow, and we don’t allow any!

While I would prefer to have my children with me all of the time, they do spend every third weekend with their father. Which lends itself to another inner struggle for me – if you do any research on children with autism, you will learn that they have a propensity to wander, they gravitate towards water and they have no sense of danger. As a mom, it is VERY SCARY to let go and put my children’s safety 100% in someone else, but I have no choice. So rather than losing myself in worry, I am learning to use my precious little free time to do what is important to me.

In the 19 months that I have been a single mom, I have become very involved in autism advocacy. I have met so many incredible families and learned so much from autism organizations, from providers and from other families. I have made more time to spend with family and dear friends. I have reached out and formed new friendships for myself and my family with new friends. I have discovered a new hobby in walking gourmet food tours, I have joined a gym, I have gotten involved with a health and wellness company, first taking the products for myself, then for my son and now working as a consultant for the company. I pray that this is my opportunity to be able to provide for my family while also being able to stay at home with my kids, take Holden to an incredible school for children with autism (in a different city!) everyday, to various therapies outside of school.

God wants each and every one of us to to live our BEST life story, to live that beautiful, edited, anointed life. But you know what? (God knows!), this life on Earth is a beautiful mess.

Thank you for blessing me with this beautiful mess, Lord, and please bless the mess I make of it!

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Shea currently blogs at Tickle Fights & Tummy Aches.