Most days when I go to see Josiah he is sleeping. This is how I found him yesterday afternoon. It doesn’t seem to matter when I get there. I’ve tried different times of the day, hoping to catch him wakeful and excited to see me. I haven’t had much luck.
For the past 3 days he has pushed me away and seems irritated when I try to get close. He signs ‘finished’ and if I don’t immediately retreat from his personal space, he hits himself repeatedly in the head.
I tried keeping my distance for a while until he woke up a bit. It was 1;30 in the afternoon when I got there. I timed it so he would have had his lunch and a nap. I was hoping he would be happy and interactive. Wrong. He just wanted to sit on his bed and be left alone.
He pushed away his light up ball. He pushed away his ipad. He pushed away his beads. His BEADS!! He even resisted the nurse’s attempts to get him into the bathroom. She said she’s never seen him like that before.
When I tried to put his sandals on to take him for a walk, he ripped them off. He jumped up and tried to put them in his snack drawer. I helped him put them in the closet instead. He quickly closed the door, signed ‘finished’ and got right back in bed. This visit was not going as I had intended. Clearly it was not going as Josiah had intended either because he was obviously annoyed by my presence.
Is this a reaction to the medication changes? Is he depressed? Is he angry and frustrated? I think the answer is probably yes to each of those questions. I think he’s trying to maintain some control over a situation in which he has no control. Unfortunately that means his world is shrinking. The few things that used to make him smile no longer do. The people he used to love being with he no longer has any interest in. How long will this go on?
I sure hope this is temporary and just one short stop on his road to recovery. We certainly don’t want Josiah camping out here; losing interest in everything and shunning everyone. It’s difficult visiting with him when it seems my mere presence is a source of agitation for him. But it won’t stop me. I’ll keep trying. I noticed yesterday the balloon I brought last week was gone. And he doesn’t have a string toy at the hospital, Our supply of string toys is severely depleted. I haven’t seen one around here for a while, but I will do my best to look for one. If I bring some of his tried and true favorites maybe it will make today a bit brighter for Josiah.
Now, if I could only sneak her in to see him, I think he might just crack a smile.
Sandy, in my devotion this morning I read Hebrews 10:23 ” Let us hold unswervingly to the hope we profess, for he who promised is faithful”. Thought it seems appropriate for you and all of us with you on this journey. Continued prayers for Josiah and you …….
Thanks Heidi for sharing that. It’s so important to keep scripture running through my head when it gets tough like this. Hanging on those promises! <3
Just a quick perspective. ….by pushing things away and indicating to you that he is not interested….shows…he is STILL communicating with you…….though painful. ..it is still communication. ….
ABSOLUTELY!! He is communicating quite clearly…it just hurts a bit! : o (
What is a string toy. ..I will look for some, also.
A string toy is a plastic textured bead we attach to a piece of ribbon. It started with a balloon string being tied to a weighted plastic bead years ago. Josiah pulled the balloon off and released it. He kept the string with the weight on the end and played with it for hours. So I found a bag full of small, plastic, textured beads at a second hand shop one day and we’ve made ‘string’ toys for him every since. Only problem is now we are down to the very last one. I’ve searched on line and cannot find these ‘beads’ anywhere. I may be able to substitute some other type of bead for these, but the texture is really nice and something Josiah enjoys. Right now it doesn’t really matter. He had no interest in his beloved string toy today!!
Sandy, I was so happy to talk to you yesterday. You are and incredibly strong woman, and I admire you and your determination. I am confident this is just a phase, and when they get things figured out, you will have your happy boy back. It’s just a long, painful process getting everything tweaked. I am praying for all of you. Josiah is a strong boy, of course, look at his parents.
Laura, you have always been my go-to for wisdom about this roller coaster world of autism! I so admire YOUR strength and determination in all you have done and continue to do for Morgan. From the moment I met you I knew you were amazing! So happy to have you as a lifelong friend. Thank you so much for your prayers. We’ll chat soon.
I am a nurse and I would say put the dog in a duffle bag and take him in! Rules are meant to be broken and parents have to be advocates for their children. Plan your visit when you know a “kinder” nurse is working, one that is less likely to be upset if the dog is discovered. Plan a short visit. Forgiveness is easier to ask for than permission. I hope you take my advice to heart and do what is best for your child rather than follow a specific rule. The only reason I would say don’t take the dog is if your child is there because he’s immunocompromised for some reason. From one parent to another, I wish you the best of luck (particularly getting the dog in). We took a dog in the heart hospital to see my father when he was there, it was the best thing we could have ever done for my dad AND the dog, they both loved and needed to see each other.
Love this Jennifer! Maybe if we got Josiah out on the playground and had the dog meet us through the fence. I can’t imagine her fitting in or staying in a duffle bag and me getting her down the long hallway, right past the nurses station (with 3 nurses stationed there) without being noticed! Would be such fun to try though! Haha!! I could just imagine the ruckus we would make with all the other kids racing out to see her. Josiah loves Mocha but the last few days he was home he was aggressive with her too. I’m not sure how he would react to her being there. I’m not sure how he’s going to react to me being there anymore!! : o (
Hope poochie can get in!!!
Ha Ha! Not sure Josiah would actually enjoy her at this point!!