We’ve noticed some behaviors our Brave Hero is sporting lately that are a bit concerning.
Little things, that are at the same time big things.
Like Parker’s car seat. Parker LOVES to go for rides in the car. I used to feel guilty seeing how excited he was to get into his car seat, with what I knew were thoughts of a grand adventure in mind, even though I also knew that he was heading to a surgery. Or a blood draw. Or anything that wasn’t fun. It didn’t matter though. A car ride was worth it all.
Now Parker holds on to me for dear life each time I try to put him in his car seat. It’s taking one person to position Parker and another to peel him off my neck to get him into his car seat.
So very different from his usual. And, well, concerning.
The next example is Parker’s play set. The one that he has spent every minute he possibly could climbing up the stairs of in order to slide back down.
Now? He doesn’t want to climb up. When he does make the climb, he’s terrified of sliding down.
Many times when I try to encourage him to climb up the stairs he’ll head back inside instead. Just today I had to carry him down off the slide platform because I couldn’t bear to see the scared in his eyes when I was trying to entice him to slide down.
Nothing bad that I know of has happened. But that is the guilty part. The part that I don’t know of. We’ve had a herd of new nurses tromping through our lives lately. Nurses that while willing to sit at the top of the play set and hang out on Facebook via their phone, weren’t willing to actually interact with Parker outside.
But that wouldn’t explain the fear of getting into his car seat.
Wet and cold weather may be great for peas, but not so much for little boys.
I had hoped to spend this Spring Break taking Parker on trips where only fun was involved, in hopes of calling a truce with his car seat. Unfortunately I missed the memo that the weather at the end of this break would make going outside not the best of ideas.
Then there has been the more than usual time spent on the computer researching insurance appeals and trying to find ways to provide Parker with a Sleep Safer High Bed, and registering our upcoming yard sale with the Utah Division of Consumer Protection…….just in case my local Troll decides to try to stir her usual pot of bitterness.
Good times, eh?
I’ve spent so much time trying to break Parker of his habit of chewing on his oxygen tubing. Imagine my surprise when his feeding therapist told me how great it was for him to take that tubing and chew on it with his back molars. I’ll be making him an oxygen tubing ‘necklace’ just for this very thing.
I’ve made the decision that if this appeal is denied, then I’m going to have to find an alternate route to provide Parker with the safe sort of bed he needs. I think insurance companies know that Mama’s of medically fragile children sometimes don’t have the tenacity needed to keep fighting their denials, because their children’s needs are so all encompassing. So they deny. Again. Again. And again.
My kid just seems different lately. Not as happy. Not as outgoing. Not as willing to take his usual chances that make my hairs grow gray.
And it’s making my heart hurt. A lot.
It could be something as simple as the damn sinus infection he’s been battling for over a month now. The one we’ve been given two refills of clindamycin to make sure we finally knock this sucker out.
But maybe it’s something deeper. Something I can’t know of because Parker lacks the ability to tell me.
One of the sweetest things I find Parker doing is walking around the house with his hands clapsed firmly behind him like a tiny Professor. Oh, how I wish I knew what he was thinking.
If that makes my heart feel as though it’s been ripped out, stomped on, and left to wither, I can’t imagine what it makes Parker’s heart feel like.
I’m signing off for the weekend. A long weekend. I need to spend some time with my Bravest of Heroes trying to convince him that all is good in the world….including the world of slides and car seats and his Mama’s love.
I‘ll let God worry about safe beds, bitter hearts and other things I can’t control.
Have any of you ever noticed changes in your child’s behavior like the one’s we have noticed with Parker? What did you do about it?
No answers, but wanted to tell you that I’m praying for you and Parker. Sending hugs too!
I have noticed the same issues in my kids. I started taking them to therapy, we are using trauma therapy called EMDR…it is great for non-verbal kids too and can even be used in infants. It is brain retraining. I have seen huge strides in my kids….medical trauma though needed in our kids is still trauma. Our insurance pays for it too….for both my kids.
Christine,
What does EMDR stand for? Thanks!
Eye movement desensitization and reprocessing (EMDR) is a form of psychotherapy that was developed by Francine Shapiro[1][2][non-primary source needed] to resolve the development of trauma-related disorders caused by exposure to distressing events such as rape or military combat. According to Shapiro’s theory,[1][non-primary source needed] when a traumatic or distressing experience occurs, it may overwhelm usual cognitive and neurological coping mechanisms. The memory and associated stimuli of the event are inadequately processed, and are dysfunctionally stored in an isolated memory network. The goal of EMDR therapy is to process these distressing memories, reducing their lingering influence and allowing clients to develop more adaptive coping mechanisms.
Twitter: trishdoerrler
Apr 13, 12
When you mentioned the sinus issues, I started wondering about his feeling off-balance or dizzy – that could explain both of the problems you are seeing. I have seen those with kids that have sensory processing issues related to gravitational insecurity, and the congestion could be causing the same sort of symptoms in Parker.
Not sure the best way to combat it until the infection clears up – maybe help him keep his head upright or leaned forward a bit when putting him in the car seat rather than leaning his head backwards and see if that helps.
There’s always something new to figure out, huh? Keep hanging in there – you are doing a great job!
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I was also going to mention the sinus infection. Two things that might make it worse. Going down a slide and driving in a car. My sinuses have been really bad lately and I get such a headache. It would be nice to see what happens when his sinuses are better!
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Twitter: livingingrace
Apr 14, 12
I have no answers, either, but you know you are in my prayers.
Why do you have to register a yard sale? Can anyone in Utah not just hold a yard sale and make money for any old thing? Seriously? That is crazy. I mean, your stuff, your money. Who cares how you spend it.
Love you.
Oh, Tammy, I know that little professor walk!!!! When Noah does it, he has this smile on his face that says, “I am so proud of myself.” But we can’t quite figure out what brings it on. What is it about our special little guys that they do so many of the same things? I just can’t wrap my mind around it. There is so much more to Down syndrome than an extra chromosome.
Blessings to you and sweet Parker. Hope he gets through this quickly. Is he maybe just becoming more aware of movement and being out of control for those brief moments on the slide and movement in the car? Although I like the fact that Noah and I can communicate without words, this nonverbal stuff is for the birds at times like these. Keep us updated, and I’ll let you know if I think of anything. Noah and Parker are birds of a feather when it comes to this kind of stuff, that’s for sure.
Alyson
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