In which I ask for your advice

You are all really cool people and I could really use some advice on a number of things:

So I am really struggling with Belle. She wakes up every 2 hours at night. During the day, unless she is being held, she will only sleep for 20 minutes. She doesn’t like playing by herself and someone has to be there with her for her to relax and play. She doesn’t like being changed or diapered or buckled into her car seat and screams bloody murder every time we try to do any of these things. I know I should’ve figured this out by now but in a way I am a first-time mom as we are facing so many things with Belle that we never faced with Nathan! Would LOVE any help/feedback/advice you could offer a newbie mommy! I am at my wits end and don’t even know where to go for help!

Nathan is really struggling with his new AFO’s. They make him tighten up and he has a hard time bending his knees. He can walk in the Pony by using a motion of the feet, but with the AFO’s, he actually has to improve his gait pattern and he cant’ seem to figure it out. He tries so hard! Today he was able to move his right leg forward, but the left leg doesn’t move at all. Any ideas? I feel so bad for him, gaining mobility and then losing it and having to work so hard to regain it 🙁

And since I seem to be on the topic of struggling, I am struggling to find a routine/rhythm to my life. Every single day seems to be different from the next. And every day seems to be SO BUSY that I find myself pulled away often from the kids to take care of stuff. Both Belle and I need a routine so we don’t feel like every single day is an unknown with a bag of surprises. How do you manage to keep a routine given that every day seems to have a lot of things to do/appointments/novelties?

I am also trying to find the right balance for Nathan between stability, sustainability, and intensives. I want to do a 2 week medek intensive in New York, another 40 HBOT dives, and another feldenkrais intensive. But for each one of these intensives we would take Nathan away from his daily routine, daily therapies, and continuity at school. But at the same time I think these intensives would also have benefit. Oh what to do what to do, when and how often? How do you balance sustainability with bursts of intensive therapy?

And how do you give you typical child balance and stability when your non-typical child’s life requires SO MUCH WORK?

And does anyone know anything about photography that they can donate a few phone minutes of your time? I am trying to understand what aperture, shutter speed, exposure, ISO are, and the interplay between them. Would love some help, sometimes what someone can explain in 10 minutes can take one 10 hours to figure out on their own. Thanks!



  1. Marcela,
    It has been by experience that balance,or the feing opposite of feeling like the ground is constantly shaking beneath your feet, takes time. And for us it’s been like years. Literally. It’s just now in the last few months that I’ve actually not felt like I’m panting all the time.

    And as for figuring out what to do abd what not to do, that comes with time too. I’ve had to just weigh out my priorities and let go of the inner rhetoric that says I’m not a good mother unless I get Everything done. I had to start looking at my motives for doing what I was doing and be honest about whether it was worth the time, energy, and effort. If not, why was I still–making it or forcing it–to happen? Again, time takes time and most of what we learn comes from our own experiences of what works and what doesn’t. Maybe you decide that y’all only leave twice a month rather than every week. Could Belle’s insecurity be from leaving all the time?

    Kids thrive and flourish on routine because it gives them security and helps them feel safe. I may be way off, but I know my kids are a whole lot less clingy and just overall happier when our lives are predictable (as predictable as can be under the circumstances). If staying put more often is not a possibility then maybe try comforting her where she’s at. My middle daughter, even at 8, will throw a major fit complete with the screaming and throwing things just when what she really wants is closeness. And when I don’t react to the fit, but instead realize that she just wants some of my time, the situation immediately dissapates. I pull her in to my lap, screaming and all, and just hug her. She melts. Now, the selfish being that I am, it takes a while and a measure of humility to surrender to what she needs. It’s much easier to just send her to her room and be done with it, but I’ve realized it’s not really done.

    I hope this helps. And I hope you find some answers. Time takes time.


  2. I do photography and know a little I guess. I am not an expert by all means. I would be happy to help with what I can. Send me an email and I will be happy to set something up!

  3. Dannette Funk says

    For Belle – have you had her evaluated by the Infant Program in your town? She sounds a lot like our son who ended up dx’d with sensory processing disorder. When he was a baby his sleep was odd and he reacted badly to stroller rides and transitions like to the car seat. The good news is it is quite treatable, but also the earlier the better in helping the kiddo learn to cope with what his/her brain is telling the body. Good luck.

  4. Don’t ask me about photography! I try figuring that stuff out and just end up keeping the thing on auto!

    Routine is hard–especially if you’re not the kind of person who likes routine. I don’t care for it myself, so I struggled as a teacher to keep my kids on a schedule when I wanted to throw the whole thing out the window.

    We’ve had a similar experience with Charlie–he does great with a routine, but we want to go to parties and visit with friends and eat out and that stuff just doesn’t always go together. We have finally gotten better at saying no although with the holidays approaching I know we’ll fall off the wagon a bit.

    As far as intensives go, I would try to schedule shorter intensives for times when Nathan isn’t in school. Look at the calendar and see when he’ll be out. Charlie managed to go to ABR and didn’t miss one day of school because of how the schedule fell. I think we may try to do some HBOT dives this summer. It’s hard, but I do think kids thrive on routine.

  5. I agree with routine! With both boys, routine is so important. If we get out of our dailey routines, things get out of wack quickly! It is hard when traveling. Like Katy said, try to do the intensives when Nathan is on vacation. I have been told over and over, that kids thrive on routine! When they get older it is not a problem.

Speak Your Mind