Yesterday I had an absolutely lovely afternoon with Apollo. Enoch was working, so it was just the two of us all day long. I have never had this particular parenting pleasure…a four-year-old to myself all day. We ate lunch in the sunshine, checked the mail and took a walk. I loved it all. I bought him a ball at Walmart for $2.50 and help enjoyed it all afternoon. When he saw it he said, “You just wanted to surprise me with something, didn’t you Mom?”
See the second photo? That’s the look Apollo gives me when he realizes he’s been “caught” picking at his g-tube.
What this wonderful afternoon doesn’t show is Apollo’s extreme anxiety. Since having the kids at school all day I have discovered that he is terrified of our floor. The minute the kids leave for school and the house is quiet, Apollo is suddenly afraid to sit or stand on the floor by himself. If I “force” him, he will hold onto my pants for dear life. It makes doing anything (other than sitting on the couch with him on top of me) difficult. This all started when he had a “creepy dream” that must have somehow involved the floor…
I have worried about the effect of chronic sickness on Apollo since he was a baby. If you know anything about child development you’ve heard of the healthy attachment cycle: baby has a need-baby cries-adult meets need-baby develops trust. Except in Apollo’s case, he was hungry and in pain, we tried to meet his needs, but he didn’t feel better; he was still hungry and still in pain. Most adults he met as an infant hurt him (doctors and nurses).
He isn’t the kid you see in memes and inspiring new articles “Childs Always Smiles, Even Through Heart Surgery”. Nope, he’s pretty miserable in the hospital and not chronically happy or cheerful. In fact, he has “unhappy child” written in his medical records to warn doctors and nurses just how difficult he is after surgeries.
His medical needs have most definitely affected him. I try to remind myself, it is all part of his story…he is taking small steps. He now stays in his class at Momspot and Sunday School and enjoys both. Yesterday I dropped him off, for the first time ever, at his grandparent’s house, alone.
Baby steps. Small signs of progress. I keep track of them all.
This too is part of his story.
Renee… I so admire your parenting with Apollo and his special challenges.
I feel like I am starting to see your other sons’ faces in Apollo’s more and more!
If it’s any comfort, when one of mine had eye surgery to correct a cross-eye, despite my having “prepared” him in every way I could, including reading Curious George Goes to the Hospital, he kicked the doctor in the face as he was coming out of surgery, and when they wheeled him back to the recovery room, I was asked to sit on the bed and hold him down so that he wouldn’t either injure himself or kick the doc again!
Praying for you all Renee. The more I know about early childhood development the scarier raising children seems. I enjoy following your blog. Keep up the good work!
I thought that was Tucker sitting on the ball in those two pictures–Apollo is looking more and more like his big brothers! I have my own chronic health issues and grow weary of the “you should try” comments people make to me. So I’ll make this quick 🙂 I have a good friend whose son had 2 open heart surgeries while he was a baby/toddler, definitely pre-verbal. She’s done a lot of research on bodily trauma that occurs in a pre-verbal state, and has tried lots of things. She has found some success using some very specific essential oil blends, targeting trauma and anxiety.. It seems everyone these days knows an essential oils distributor, so I’m sure you know someone! Just a thought, always praying.
Right there with you. <3
Love your blog and have read it for years now. I’d like to give a subtle suggestion as someone who works with children with intense anxiety. A lot of the kids I work with have been through similarly hectic medical journeys in their young lives. So first of all: Hats off to you, Mama. You do an amazing job with your kiddos and have helped Apollo through so much!
A lot of anxiety in kids is super specific in certain areas, such as Apollo being scared of the floor. We can do things to help alleviate those anxieties even though it doesn’t fix the anxiety as a whole it does really help us as parents or educators deal with the child. It also helps the child to stop focusing on that one ‘trigger’.
I obviously don’t know the whole story regarding the floor fear or the dream that led to it but some subtle and some obvious things can be done with him to reduce it until it goes away. Here’s a couple examples of some things maybe you could try:
1. Get a spray bottle and fill it with ‘magic’ liquid (water, you can present this any extremely fantastical way or subtle way but it helps if he thinks it’s more than just water) and use it to spray the floor so whatever he associates with it doesn’t come. (if it’s monsters or demons or ‘evil steam’ as one child I worked with put it) You can do this every morning or evening or multiple times a day and scale it back.
Consistency is important with any of these suggestions. It’s important to keep in mind that using fantasy or your imagination is helpful to children that believe something sinister is out to get them.
2. ‘special’ placements or rugs in areas on the floor as ‘safe zones’. Demonstrate that nothing will happen to him on the red circle (or whatever you are using, it’s super great to get your other kids involved to show him this). You can start out with 1 safe zone or special spot or any other words you come up with to describe it and then add a couple more. You could also start with more and then minimize them. Once again take a decent amount of time with this. Maybe 1 week before changing it again then another and so on. Show multiple times a day, especially when he seems upset that those areas are safe. After a good amount of time and he shows mastery of the concept show him that stepping out of the safe zone is fine. Test him with this, get in the circle and then step out and say, “Can you come out too? Look how good it is out here!” Reward progress at this stage. (Staying out of the circle for x amount of time and x amount of distance away gets a m&m and a lot of praise or whatever works for him)
3. An object for him to carry to protect him [Safety blankets used as a cloak (have had particular success with this), a special jacket, a stuffed animal or knight toy to ‘protect’ him (knights, policemen, firemen toys have all worked well in the past), a hat or headband that blocks the scary thing from getting to him, etc] the key in using something like this and really using any of these suggestions is making it seem very real to him. Kids are very imaginative and often mix fantasy and reality and sometimes parents feel foolish catering to this. I say fight fire with fire, if he’s scared of something that isn’t there give him something that isn’t ‘real’ to help him against it. I’ve even used this method with a toy sword, he was deathly afraid of the upstairs in his home saying there was ‘evil’ on it. The sword was magic and he used it to get rid of all the evil.
I can help with more ideas if you want to shoot me an email. I know it’s strange taking advice from strangers off the internet but I’ve worked with some pretty scared kiddos and what Apollo is going through isn’t so uncommon especially considering his circumstances. Fear manifests in strange ways!
Always enjoy your blog! Especially your ‘anonymous’ stories. Those get me giggling every time! Blessings be to you and yours!
Try to remind him about all the scary things he has faced in the past and beaten. The scary hospital, tests, surgery etc. Tell him how strong he his and that nothing can defeat him. The ‘magic water’ bottle, security blanket etc suggested above can also be very effective. The key though is to build his self confidence. If he feels he can face and overcome anything, he’ll be fine.
Maddy has some good ideas. I was also thinking that placing small rugs around the room, as ‘safe’ spots would help. I was also wondering if you gave him a box of chalk and let him draw pictures, dragons, horses, flowers, whatever he wants on the floor might help. And chalk does sweep off so it doesn’t leave a permanent mark.
Hugs. You know how amazing I think you are.
hi,I just wanted to share my story in hopes it could help educate about your son and what he could be going through. Im 18 years old and was born a preemie i spent 77 days in the nicu between life and death. Like your son i was in constant pain and lad lies from my heart through my head to just about everywhere. My only semi positive human contact occurred when i came home at four months. My mom called me a “sure footed child” I was always scared of everything. Well at 16 some traumatic events happened to me, and within the first therapist visit she diagnosed me with PTSD. Me and my parents did some research and with her guidance we established that it is preexisting PTSD and although i do not remember my hospital days my “trauma brain” does. Anyways I know it can seem like hurdles and impossible but he will get better, every positive experience he has will help him gain trust in the world. I personally wish we had known about my issues earlier on so i could have got help earlier on. Don’t worry he will with your help find strength and overcome anxiety. Two years later my life has changed, and i hope for your little man that we will fully recover and soon 🙂 -L from California
Thank you so much for sharing this! I think it is very likely he suffered/suffers from PTSD. His reaction was so extreme after his first heart surgery we (and a couple of close friends) wondered if it was possible that he woke up during the surgery…I am so glad to hear your story.