One of the things that always amazes me about this blog is how much great advice I get, on everything from therapies for Max to how to get rid of groundhogs. I think there's lots more we can learn each other—like, how to get rid of squirrels and maybe just maybe info about stuff that will help our kids and us, too. So I'm going to throw out questions once in a while. While I cannot provide cookies or couches to lie down on, I hope we can all benefit from the group therapy (because, you know, backyard groundhogs can really wreak havoc on your soul).
What's on my mind lately is carving out time for Max's appointments. The serial casting threw us for a loop; we've needed to take Max out of school and get him to the hospital once a week, which is a challenge with two working parents. I'm using the royal "we" because this one's fallen on Dave, who has more flexibility with work. The night cast has to be done during a week when we're away at the beach, though, and so I'll be driving Max back to the hospital from vacay.
Dave and I are good about co-juggling Max's appointments. We always do the biggies together, like Max's annual visit to the neurologist. When he was younger, we went together to every single doctor's appointment, mostly because we were both so terrified of what was happening and needed each other for support. But now, if one of us takes him alone—say, to the pediatric ophthalmologist (Max had vision problems when he was a baby, and seems to be OK now)—that's cool.
Therapies are a whole other circus act. Every September, I type out the schedule and hang on the bulletin board in our kitchen. I've worked hard to find therapists who'd come to our house, which was especially critical when I had a full-time job. The occupational therapist comes Monday and Wednesday. Tuesday is music therapy. Thursdays, two awesome teen boys from a program come to hang out with Max. Friday and Saturday morning, speech therapy. Sunday is our only free day, though I'm not sure Max cares about having a day off. He doesn't yet think of therapy as "work"—I've always told the therapists never to say "Let's do some work" but, rather, "Let's go play" or "DUDE!!! Let's chill!" (OK, not that.) Max has had therapy since he was a month old. It's a natural part of his life.
A lot of our life revolves around Max's therapies, and that's fine with me. He is still young, and we are determined to get him as much help as we can. "Therapy up the wazoo" is our philosophy. Also, "Chocolate ice-cream up the wazoo."
What about you: How do you juggle all the doctor and therapist appointments?
I like the term "therapeutic lifestyle". See if that fits for you, Ellen (and others). Mostly, I use the term to mean - forming habits that eventually contribute a child's development. Like, wearing a brace everyday - as part of a lifestyle not a grudging-chore. Like, giving a child more time to dress herself everyday - only to find she eventually does it in the same time as her same age peers.
ReplyDeleteI sincerely believe in the effectiveness of a therapeutic lifestyle for some skills over the 2x/week 'teaching' (play) with therapists. Barbara
As usual, another highly relevant post. I like TheExtra's notion of 'therapeutic lifestyle' a lot because it is our norm, and Hallie's as well. She is very aware of it not being 'play.' We'll say to her: "do you want to go play with x?" and she'll retort: "Let's go to therapy, mama!" It is a lot to juggle though: she sees OT and (usually) Speech (right now we're on a break) privately, on top of the OT and speech she gets at preschool. And she has hippotherapy once a week and Floortime/DIR twice a week. Then there are the four school-based therapies. And the doctors' appointments (now done to once a month on average, but with high seasons being summer and December/January). We split up the privates amongst ourselves and our part time nanny and juggle the medical and surgical visits as they come. There's never enough time and we're raising Hallie's little sister in a series of waiting rooms, but we're hoping that paying it forward will let us cut down on this some by the time we get to elementary school. We may, however, be delusional on this one.
ReplyDeleteI was fortunate enough to be able to work from home, so I handle Mack's therapy and doctor appointments mostly alone at first. I'd also do my own therapy with him.
ReplyDeleteAfter I got laid off, I started freelancing. As time went on, I got a part-time job. When Mack's in school I work, when he's out, I'm home. And I still freelance.
My husband's a cop, so he never had a lot of flexibility in his schedule, so it fell to me. As a writer I've been a able to find a decent balance.
Over time, it all settled down and seems that the appointments are getting less frequent as Mack gets older, which is a blessing as school gets more challenging.
My husband travels for work most weeks, so the therapy and doctor visits are my job.
ReplyDeleteIn the case of my three year old twins, we're lucky that they both get inn-home OT and PT, because we can schedule both therapists at the same time and they work with both kids together and we can knock out two therapy appointments in one afternoon.
I save all their check-appointments with neuro, pulmo, GI, pediatrician, and the wheelchair clinic for non-flu season months, which means summer is super busy with appointments. I had a really hard time keeping track of everything until I upgraded my plain old cellphone to a smartphone on which I can access my Gmail calendar. It's nice to be able to schedule an appointment while still at the Dr's office and be able to check my calendar to know that the time works.
Keeping up with everything is no doubt a full time job. The only think that might make it easier is if we lived next door to the hospital! Time with these specialists is so hard to come by that when I forget and we miss the appointment which was scheduled for months, I feel sick. Thank goodness for my calendar on my smart phone, and for email alert reminders of appointments.
Good post. Lots of relevant comments too.
ReplyDeleteThe way we think of it is that we are the professionals when it comes to our kids and time management is important. Our kids cannot be messed about by the medicos and we cannot allow them to become overtired with multiple appointments each week. Keeping a calendar is obvious but managing it effectively is vital for everyone's sanity.
Also we review the effectiveness of his therapy and have even requested (and got)changes to personnel (one speech therapist comes to mind).
We can't pretend to be as knowledgeable or skilful as the medical folk but we are advocates for our children and we know what's best for them.
I live by my icalendar. We're still negotiating our new IFSP but previously, Mondays were autism school and then behavior therapy, Tuesdays were speech, Wednesdays school, Thursdays OT, Fridays school and speech. We may have to cut out M's naps now that we're re-working behavior therapy and adding more hours. In addition, we have the doctors' appointments for our other son and he is now being evaluated for early start too, for physical therapy. I don't know how we'll fit in therapy for him with all of M's stuff.
ReplyDeleteMy husband has some flexibility with work, so he was able to attend our IFSP meeting and he can take M to school while I am at a sleep study with J, for example, but otherwise all the appointments fall on me.
Well, you're going to think I am horrible and neglectful, but my mother does most of the front line "medical management" nowadays! I just can't get off of work lots of times, so she is my savior. She insists that she not only doesn't mind, but enjoys the opportunities for one-on-one, so I am going to take her at her word.
ReplyDeleteMy daughter is only 2, so we don't have as much as you guys. We have OT 2x a week, PT 1x a week and the chiropractor 1x a week. The PT & OT come to our house, and that was one of my main criteria when searching; my other daughter is 2, and she doesn't always sit still anymore during therapy, so now I can let her run around the house without having to watch her nearly as closely as I would have had to at an outside appointment.
ReplyDeleteI do all the therapy and doctor's appointments myself. Like you, in the beginning my husband would come, and he still takes off for the big ones. And he is off every other Monday, so he gets to participate in OT more than he did in the beginning.
It is just part of your life, which doesn't mean you don't ever get annoyed that some cool event pops up that you have to miss b/c of therapy, bit it's mostly normal. All of the moms in my moms group know too that, unless the event is on a Tuesday (our only free day), we're not going to be there until 11.
I have three special needs kids so I try to do as many appt.'s at the same time or back to back as I can. Most are willing to acommodate. We regularly have speech, OT, Attachment Therapy, Psychiatry, and Case Mgt. As a home schooler I also have special ed help. Then tack on your regular health stuff.
ReplyDeleteI also try to designate one day of the week only for appt.'s. For the summer it is Wednesday. It's not really possible to have everything on one day, but it does leave more free time the rest of the week when you block off one day for most.
I never leave home with out my diary and I transfer all appointments onto a family planner at home and vice versa. I started this 15yrs ago when there wasn't technology to keep track of everything and now I am accustomed to my diary and calendar method.
ReplyDeleteWe had therapy and medical appointments 6 days a week in the early years. I refused to do anything on a Sunday - that was our family day when we weren't in hospital, plus we needed one day that we could see our family and friends and sleep in.
My husband didn't and still doesn't have the flexibility with his work to help with the therapy and appointments so I've done it on my own. I just have to be organized and flexible. I've learnt not to stress and call everything a challenge because you can overcome challenges.
"Therapeutic lifestyle" is a good phrase, Barbara. If stuff becomes the norm, it doesn't feel like a chore. We are not fully there yet!
ReplyDeleteAbby: "Paying it forward" is it, exactly. The early years are so critical. All the sacrifices and effort we make now will surely pay off.
Megan: Yes, appointments are not as numerous as they were when Max was a baby. It was most intense back then, even though we also had a lot of in-home therapy. I also freelance, so although I am in an office several days a week, I can work at home one day a week and also have off one day a week, which has made a big difference.
StickyMommy: Such a great idea to try and get all the appointments into one day, though sometimes hard to arrange. I have tried! If you can plan months enough in advance, I've found it's possible.
Jane: Calling things a "challenge" instead of a "problem" is a good idea. You are a wise woman.
Cass/Maya: I really should put things on the Gmail calendar or in Outlook. One of these days, I'll convert from my beloved paper planner. :)
DDerby: SO true! In addition to all our other roles, yes, we are time management professionals! Adding that to the resume. !!!
Felicia: You are the opposite of horrible/neglectful. You are very lucky to have a mom who can pitch in like that.
We are getting ready to transition to full time kindergarten for our son and I know it is going to get much trickier to figure out how to schedule private therapies and medical appointments. Right now, it's tricky to figure out how much private therapy to pursue. The more we do, the less opportunities I take to make our home life more of a therapeutic lifestyle. I find myself doing many things for my son instead of taking the time to teach him independent skills just so that we can get out the door in time to get to our next appointment. I also struggle to keep up with the stretching, exercises and aug comm work that we should be doing in between therapies. I appreciated your untended garden blog in the midst of a weekend of feeling like I'm never doing enough.
ReplyDeleteThis is such a great post! E has, on average, 4 therapies a week an a minimum of 3 "therapy-types" of semi-structured play (swim, park, bike, etc) per week. I have a flexible work schedule, so the burden (honor? whatever) falls on me. I use google calendar (lots more colors than ical) and sync it with my husband and my phone. I also have a wipe-board calendar (5 weeks at a time) that I write almost everything on so our Fantastic Nanny Annette can be in the loop (and another visual reminder for my husband to keep him informed of what is going on, since he doesn't always read the online calendar). I feel like it's a pretty extreme juggle, between therapies/activities/doctor's appointments and the rest of typical life (school, family, birthdays, etc), but that's just the way it is.
ReplyDeletesigh. today is a rough day, and this question hit home for me. Unfortunately, I'm a single parent. Which means ALL of it falls on me. Everything. From the autism to the hearing loss to the regular yearly checkups and everything in between.
ReplyDeleteI'm an employers worst nightmare all wrapped up in one short package. At the beginning, they are always accommodating and kind. But they don't realize what it actually means: at least one day a week I'm out for things. Some weeks it's 3 days a week. Sometimes I can come in late, or leave early or work around things, but a lot of the appointments are long (sitting in waiting rooms long) and I can't get there.
Eventually it causes a lot of stress, and becomes quite difficult to be in that work environment. Bosses feel like they are being taken advantage of, co-workers start to think I'm out having the time of my life when I'm not in the office. It's draining when you are fighting this battle for your children. It's even more draining when you are fighting a battle at work too.
So the short answer is: I just make them happen. The long answer is: It's at a fairly big risk to my employment, and the stress takes a huge toll on me.
Not all parents are as capable as the readers here, dderbydave. The responsibility for deciding on treatment is the parents', indeed.
ReplyDelete