Community in the Midst of Special Needs

This is day 24 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, Shelly Richardson is going to be posting her thoughts about community and how she has seen it played out in her life. 

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Being the parent of a special needs child is not for the faint of heart. So what if you have two? As I sit and write we are in the wait. The wait for a diagnosis that we already know in our hearts to be true, but still we try to deny it. Because, really – what are the chances? Two children with autism? One biological. One adopted.

We have walked this road before, the first time around we were newbies to the world of autism. Our first diagnosis came with the prevalence of children on the autism spectrum at 1 in 110. Now it’s 1 in 68. Add to that the incidence of being born with cocaine in your system, the fact that we have a sovereign God who leaves nothing to chance and guess what? Our chances are pretty high.

As we started down this road, meeting with therapists, doing the research, watching developmental patterns, everything was all too familiar. The signs were all there. We started dissecting her behaviors, started putting labels on her and then, in a second, we are back in denial. Because it is hard to accept. To know that everything in your child’s world is nothing but an irritant to her system and at just 3 years old she is searching for ways to cope. Because you know that she is being judged with each ear piercing scream, the biting of her arms, the hand thrown in frustration, the food slung across the table. It’s all being judged. And so are we.

As I said earlier, being a parent of a special needs child is not for the faint of heart, neither is being an aunt, uncle, or grandparent. Neither is being a friend. Community is hard in the special needs world. Everyone wants to empathize with you, they think they understand. But this? This is something you cannot fully understand – the physical, emotional and spiritual exhaustion that comes from being on alert 24 hours a day – not unless you live right in the center of it. Not unless you are the one that does not have the option to walk away when the waters begin to swirl, the winds rise and you see the storm approaching on the horizon. When you have not lived it, truly lived it, it would be like telling someone you understand how they feel when they lose everything in a storm, their home, their belongings, their loved ones. You tell them you understand because once a storm came and blew over a tree that just happened to hit the side of your house and damaged the roof. The rain fell through and ruined the carpet and a chair. The dog? He ran off and you could not find him for two whole days. It was horrible.

Do you notice the difference here?

These families know you want to understand, but really you cannot and they don’t expect it. Because until you have lived it… until we lived it… we did not understand.

There is no understanding without fulling living it. Because this is where the task at hand gets rough. When every single day you are dealing with meltdowns, food allergies, sensory issues and sleep issues; simple family gatherings, birthday parties, play dates become nightmares. Endless reconnaissance missions scouting out all the minute details… Will there be food? What will be served? Will the weather be hot or cold? Will it be too bright? Too dark? Too loud? Too crowded?

You laboriously layout plans with backup plan upon backup plan. You pack as if heading for vacation, or even worse, moving to another country for the day. Carrying food, changes of clothes for each and every season, toys, books, movies, more clothes, because you just never know what is going to happen. And with all that planning, and replanning? You will without a doubt forget the one detail that will bring the whole day to a halt, and it spirals downward as you head for home defeated.

Trust me, there are just so many of these missions that you complete before you are ready to throw in the towel. And if you feel like giving up? How could you not expect everyone around you to feel the same way? And that’s when it hits you. They did. They. Gave. Up.

You really don’t know when it happened, but suddenly you realize that one by one each friend had fallen by the wayside. Invitations became fewer and fewer. They had their excuses for not inviting you… “I understand your situation and I don’t want to add any pressure. Or it will probably to loud, too bright, too dark, too fast, etc. so you probably don’t want to come.” It’s all for your benefit.

Then eventually the invitations stopped.

Who can blame them? This life is not easy. There are days you want to climb in bed and scream into your pillow, or maybe you even want to run away from home. It doesn’t matter where, a ticket to anywhere but here will suffice. But you don’t because these are your children. You love them. You fight for them. You protect them.

So you begin building walls to guard their hearts. You make excuses to them as to why they don’t see their friends, or even their own family. You make them believe they would not enjoy the things others are doing. You do everything in your power to make them feel special in their own little world, safe inside the walls you have constructed.

This place. This is the place lonely and dark. It’s a lonely that cuts deep. You think there is no one that gets it. You think no one really wants to know how you are doing, because they know once they ask, your mouth is going to pour out words and they just might not ever stop. Who wants to listen to that?

What you wouldn’t give to for the opportunity for your child to have a friend. For you to have an actual adult conversation. To have someone simply ask how are you really? These things rarely happen.

Or so it seems…

What if in building your walls of protection and barricading hearts you shut out the ones who just might actually want to stay? Community is a two way street. If you don’t let them in, you will never know the ones who truly love well.

So, what if you let down that wall and just let them in?

Let them in. The ones that are willing. Let. Them. In. Let them see the chaos. The meltdowns. The panic attacks. Just let them in. Let them decide whether to run or stick. You might just be surprised. They might just stick.

Community might just look like the friend carrying your purse through a bookstore as your child runs wild chasing the next bright and glittery thing she sees, and it all just comes natural to her. She follows you without a bat of an eye. No questions asked. The entire day goes pretty much like this. It’s blurry and out of focus. But it works. And she sticks. She always sticks.

Community might just look like the playdate that has been planned for weeks, but it seems like a tornado hit your home with dishes in the sink, toys scattered everywhere – but you let them come anyway. You let them into your dark and when you do it is sheer chaos. Your oldest is in a panic attack, and when the panic comes it takes up residence, and it’s hours before it subsides. But your friend handles it with grace, she remains calm as you flitter between them and your daughter, wanting to do the right thing, but not sure what it is… do you send them home? Let your daughter think she ruined the day? Or have them try and wait for the calm? And it’s grace. She is filled with it. She finds the perfect reason to leave with promise of another get together soon. And once they leave she spends hours texting with you as you try to calm the panic in your daughter’s heart. She sticks. She always sticks.

Community might look like the friend sitting on the floor playing with your child that is in full on meltdown, and you want to crawl under the nearest rock. She sits and plays anyway. She is confident and sure of herself. She handles it all in stride. Even though we haven’t seen each other and we have so much to say, she knows what is important. And she smiles. And she sticks.

Community might look like a phone call, a text message, an email saying, “I prayed for you today.” Someone you just met that is truly asking, “How are you doing?” Wanting to know what it’ is like, what she can do to help. Babysit. Go for coffee. go to the thrift store. Pray.

Community in the life of the family of special needs is difficult. Treacherous at times. But I promise you it is well worth the fight. If you stick, really stick you can see the beauty right there in the mess. Because in all the chaos and meltdowns, there is God right there in the middle.

If you are a parent of a special needs child I encourage you to let them in, let them see the chaos. The good, the bad and the downright ugly. They might just surprise you. Because they just might stick with you. Through every good day and bad day, through all the crazy ideas that run through your head. They just might stick. Because they know how to love well.

And if you are an aunt, uncle, grandparent, friend… I can assure you that the person in your life with a special needs child – they need you to reach out to them. They need you to let them know you will stick. They need to know that no matter what happens you are there, there is no judgment, there is only love. They need you. Go love them well.

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Shelly Richardson is a stay at home mom and is married to her best friend who loves like her like Jesus. Together they have four beautiful daughters. One biological, one adopted and two by way of marriage. Their 12 year old daughter was diagnosed with Aspergers syndrome when she was 6 years old and their youngest was diagnosed with autism at 3 years old. Shelly has dealt with chronic illness most of her life and at times has been debilitating. It is through this illness and the needs of her children that drew and her husband closer to God.

Shelly writes at Beyondborders.me. A place where she writes out her story of living beyond her borders. It is a place to share of God’s love and grace, His mercy and sovereignty, and what that looks like in her own little world of chronic illness and autism. A place where courage and faith intersect. Her hope in her writing is that you find something that inspires you. Encourages you. Makes you smile.