Support Josiah

"It's An Extraordinary Situation."

I texted Jeremy my apologies. Punching a hole in the wall seemed like the thing for me to do at the time. Now we just have another hole to patch, and it did nothing to alleviate the anger, heartache, and concern I felt so covered over by in the moment. His response was kind and full of grace: "No apologies necessary. It's an extraordinary situation. I'm happy to give you as much latitude as you need. You've certainly done that for me." 

It is an extraordinary situation. I started this website in an endeavor to advocate for Josiah's needs. He needs this therapy room and pool so badly. And the only way to get this accomplished for him is to ask for help. And the only way I feel comfortable asking for help is by sharing our story. The hope is that you will see the need, and perhaps feel compelled to help our boy. 

But advocating wasn't the sole reason for this website. It's about educating as well. We are not the only family with children this severely on the spectrum. And severe autism is rarely FULLY shared about. I don't "tell it all here" mostly because Jeremy and I want to protect our children. We want to protect their dignity, and we want to make sure that my "sharing" won't put them in any danger or cause them pain. Knowing how much to share is a struggle. 

I have mentioned Josiah's self-injury a lot. It is the main driving force behind the need for this fundraiser. There are so many reasons why Josiah hurts himself. But there is another side to the self-injury that I have only very briefly talked about. It is the aggression. Kids like Josiah who are non-verbal and very severely on the spectrum often engage in aggression. In Josiah's case, I believe his aggression is communication. He pinches, scrapes, smacks, and pulls hair when he is trying to to tell you he is hurting. He also does this at times of extreme excitement and extreme upset. He is most often aggressive when he is trying to keep us from restraining him during episodes of self-injury. He hurts himself. We restrain. He hurts us. We stop his aggression. He hurts himself. This cycle typically happens several times until we are able to get him in a position that keeps us both safe. 

Why am I telling you this? I know of families hurting like us. We feel that sharing about the aggression will somehow make you think less of our children. In most cases, they are not meaning to hurt us. We wonder if you can really grasp the fact that there isn't a "Just" that will fix this. "Just try a new communication system." "Just don't let him grab you." "Just ignore it." "Just be careful not to reinforce the behavior by reacting."  

Will you think worse of me knowing that in anger, concern, and hurt I punched my fist through a wall? Jeremy and I are often painted as pictures of patience. Our family could tell you that is just plain hogwash. Jalen had a seizure yesterday afternoon. Josiah had a major meltdown right on the heels of that. He hurt himself badly, and he hurt me too. And I punched a wall. I punched it out of anger for not being able to protect my child. I punched it out of anger for not being able to protect myself. I punched it over the concern that grips my heart about what the future may hold. I punched it because this is an extraordinary situation that causes extraordinary heartache. 

I mentioned above that I'm sharing on this website to advocate for Josiah and to educate others. But I'm also sharing here for the purpose of telling about the hope we have in Jesus. Every painful detail I share is true, but it is also true that, no matter how I choose to respond, God is in control. None of this surprises Him. He has a purpose for the extraordinary situations He chooses to bring into all of our lives. And He is not surprised by our extraordinary and even wrong responses at times. 

To the parents hiding their injuries associated with caring for their severely special needs children, we understand. I pray God makes Himself known to you. I pray He gives you comfort and strength to face all that loving and caring for your child entails. And, if you punch a wall, we understand that too.  

Thank you to everyone helping us reach our goal for Josiah. This therapy room and therapy pool will go such a long way towards helping calm his senses and upset, and this will help tremendously in avoiding self-injury and aggression.  

Because of His grace,

Christy 

Please continue to pray for wisdom as we try and
figure out why Jalen is having seizures.