Saturday, April 21, 2012

Something's gotta give

The past month or so has been really, really hard. Some might say that it's hard enough having a three year-old and a one year-old (I wouldn't say that - from my perspective, having healthy kids seems to me like it would be very easy). Life does get pretty difficult though when you start adding in 4+ therapy visits a week. The difficulty increases when you have to jungle ten different doctors. If you have to apply for Medicaid on top of all that - well that's a bit of a nightmare of paperwork. And if your husband is in class three nights a week, and if he spends almost every free moment at home working on his school projects.... well, need I really say more? Wait! I didn't even say anything about Juliana's dietary requirements...

I'm a little slow sometimes so it has taken me awhile to admit that this just can't go on much longer. I am burnt out, particularly when it comes to David's schedule which forces me in to single parenthood for half of each week. My emotions roller coaster depending on the day of the week (i.e. depending on whether or not he is home). This schedule has really been affecting my psyche but I've wanted to just keep pushing through it. I would have done so except for Calvin; he has been in such a funk the past few weeks and I am beginning to think that the stress has caught up to him, too.

A few days ago I met with our coordinator for the Babies Can't Wait (Early Intervention) program. I asked him if there would be any ramifications if we were to take a break from therapy visits for awhile. He asked about what we were doing the rest of the week. After I told him about our typical week he said "you are going to head south, fast. You need to find normalcy and something that works for the whole family." After some discussion he said that instead of seeing an OT we could begin to see a music therapist. This therapist would work on whatever goals we have but it would all be done through music. Additionally Calvin could actually be a part of this therapy. I love this idea! There would be a small cost involved... approximately $4 a visit! Not bad considering I spend more than that in gas money most every other day. This seems like a win-win; it will keep us in the Early Intervention system while giving a new opportunity to both my kids.

However it doesn't solve the problem of still having too many visits during the rest of the week. We're still looking at visits with a new OT who specializes in sensory integration (more on that later), visits with the PT and visits with the Speech/feeding therapist. There is a lot of value that comes from these therapies, however as we go along I am learning more and more what things I can do at home without the help of a therapist. (Hello! I have taught her to eat and I've done it almost entirely on my own! In my good moments, I do feel as though I can tackle anything). As I learn more and more about a neurodevelopmental approach (more on that later, too) I am becoming somewhat optimistic that we could have less need for some of these other therapies. Though I really shouldn't jump the gun on that considering that we haven't even officially begun our neurodevelopmental program yet.

I want to do everything that I can for Juliana and that means that I don't turn down any opportunities unless I judge them as being totally without merit. But something has to give. I've allowed myself to give; my sanity, my time, my money, etc. But I have to draw the line somewhere and I won't allow the sacrifice of Calvin's childhood. I won't allow the relationships between the four of us to suffer. I won't allow Calvin (or Juliana) to feel the stress.

I am realizing that I must have a higher standard when it comes to the way we spend our time; only the absolute best therapies and only as frequently as think that they need to happen. This will take some major consideration. I am praying for clarity as we embark on our very own neurodevelopmental plan in the coming week.

2 comments:

  1. Hi Liz - I may have mentioned this before sorry if I have - there is a great book by Kathy (Cathy?) Snow called "Disability is Natural". It helped me to get some clarity when I was struggling with the same decisions about therapy. We only take Sophie to OT and speech now (as well as her 15 doctors - but visits with them are much less frequent now that Sophie is two and a half). It does get easier. And I'm glad you've figured out early that you need to look after yourself and your whole family. I've just spent 5 months off work after a having a bit of a breakdown from stress and sleep deprivation. So yes - something has to give!

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    1. Thanks Kathy! I always appreciate book recommendations. :) I just ordered it!

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