I need help finding a balance (I think).

S-Tuna · October 2012

DS gets PT out of the home twice a week and in-home OT every 3-4 weeks. I know the goals of the therapies. I know DS is working hard during his therapies. But I feel like all the therapists want us to do is work work work. I feel like they expect DH and I to just spend all day working on checking off the goals in his IFSP. I know that they just want to see him continue to develop. But I just want him to play sometimes without having to work on anything. I don't like feeling like there constantly has to be a challenge in front of him.

I don't know if any of this makes sense. I have written this post a few times recently and deleted it because I don't want it to sound whiney, but I just need to get it out. I guess I am wondering if there is some secret balance that I need to find. How do you balance the work of therapy with everything else in everyday life? Is it really possible to make every single thing in life a PT or OT suggested activity? Am I just not creative enough? I feel like I'm failing my kid by not always engaging him in "work", but I also feel like I'm failing him by not giving him any down time to just play. Help!

realisticdreams · October 2012

S-Tuna:
DS gets PT out of the home twice a week and in-home OT every 3-4 weeks. I know the goals of the therapies. I know DS is working hard during his therapies. But I feel like all the therapists want us to do is work work work. I feel like they expect DH and I to just spend all day working on checking off the goals in his IFSP. I know that they just want to see him continue to develop. But I just want him to play sometimes without having to work on anything. I don't like feeling like there constantly has to be a challenge in front of him.
I don't know if any of this makes sense. I have written this post a few times recently and deleted it because I don't want it to sound whiney, but I just need to get it out. I guess I am wondering if there is some secret balance that I need to find. How do you balance the work of therapy with everything else in everyday life? Is it really possible to make every single thing in life a PT or OT suggested activity? Am I just not creative enough? I feel like I'm failing my kid by not always engaging him in "work", but I also feel like I'm failing him by not giving him any down time to just play. Help!

We did with Peyton. She started PT at 2 months old and I think I was working right around 30 hours then. Anytime we weren't at outpatient PT and I was home, she was working.

For us, it paid off. But that's what I felt I had to do when faced with the prospect of her never walking. They told us the muscles had to do a repeated movement for something like 1,000 times before they could learn it. So that we did.

After she started walking and before Morgan was born we were a little more lax about it and she soon started ST after that.

I'm VERY lax with M now and P just got discharged from outpatient PT also. I think it was easier for us because we were able to maneuver/control her more when she was little. I highly doubt we could do something as hardcore now when she has her own wants/desires.

It's very important to find a balance though, and the therapists should completely understand that. GL

Assembly_Reqd · October 2012

I struggle with this all the time. We have 4 different disciplines wanting us to work on stuff.

It is physically and mentally impossible. What I have started to do is prioritize what is important for now. Then, for the next 4-6 months, work on that particular subset of skills.

Last spring it was walking because I felt that the school system would not be as motivated for him to walk. He doesn't need to walk to be successful in school. Getting him strong and walking could free up a lot of energy for other things. Now we are focusing on speech. (So frustrating)

I just recently was looking at the ELAP and realized that this child has never touched a scissors, yet by his birthday he should be able to cut paper. WTF. He can barely load a spoon. I have to let this one go. Cutting with scissors is not a life skill, sorry. School is going to have to work on that with him. They also probably have a lot more experience with scissors therapy than I have anyway. This didn't stop me from purchasing a play-doh kit with scissors however. UGH! LOL.

ETA : I also tell the therapists that I have a lot on my plate. I also pick maybe one thing from each and make sure I do it once or twice before they show up so that I can give a positive report. You don't have to say how many times you worked on it. Also, I have a white board on my fridge that I will put up three activities per week that we as a family are working on. It is a good reminder to both of us what we should be doing every time we reload our glasses with ice....

you are not a failure. It is work and it sucks. I have lots of tips, sure, but the system breaks down here all the time too. It's much more fun to be a Mom than a TheraMom. And sometimes Mom is all your kid needs.

JoJoGee · October 2012

I struggle with this too. Mainly because I can get neurotic when working with Lily. And, that isn't good for me or for her. But, I can't ignore her therapy needs either. Just about 30 minutes ago, we were driving home from therapy, and DH and I were talking about how we need to do more at home. Sometimes I wonder "If I had worked with her more, would she be as delayed as she is?" But, then, if I think about it, and if I had committed myself to working with her whenever she was awake, then our whole family would have missed out on other great moments - moments I believe have benefitted Lily in other ways (cognitively, socially, emotionally, etc.).

I also tend to think it is not healthy for a child to spend all of their time doing therapy (I may be an outlier here). But, I think they need to be, and deserve to be, children. If therapy can be worked into Lily's play, then I will work it in. But, sometimes, she just needs to go exploring on her own (however she can).

Anyway, I just wanted to say I struggle with the same feelings.

S-Tuna · October 2012

It's good to know I'm not alone. I started to feel bad for not having this all figured out. I like the idea of writing a few things on the whiteboard to work on. We have a calendar by the fridge that I could use. Thanks for the suggestions.

bumpuser511563 · October 2012

I want to say I don't spend all my time doing therapy with DS. I work 40 hours a week and DS goes to a special needs preschool and daycare. We do go to our appointments with a therapist every week.and the other is every other week.

I just want to add that the equipment and supplies that the therapists use with our children get costly when you purchase them yourself after awhile. I am the breadwinner and the only income in our family of 3. I don't have money to be spending on equipment and supplies.

Justinlove · October 2012

To piggyback on auntie...our EI therapists were awesome. All of our therapy through EI was done in our home for the first 2 years (we transitioned to more done at daycare after age 2.5). The therapists used toys, furniture, etc we had in our home, or they lent us equipment. Since they utilized our home, replicating activities was really easy to do. As we played, I would just make sure that we were playing in a way that was fun while incorporating OT/PT/ST. Our therapists also coordinated with each other so that they created games/activities that covered multiple goals at one time.

the one thing that always stuck in my mind was something said at our first IFSP meeting. Basically the coordinator said that the therapists were there to guide and teach the parents so that we could be the teachers and therapists for our child. This is a different philosophy than clinical therapy which often does not actively include the parents.

lazysusan · October 2012

I'm an EI PT and a parent of a child who gets therapy. Very interesting balance! My oldest W-sits all the time

I correct when it makes sense, but I do my best to wear a mom hat with him instead of my therapy hat. You would be amazed how much play is therapeutic. Do your best to incorporate things into the daily routine. That's how carryover best happens because it's functional for the family and the child. Give yourself permission to have moments that are just about being a kid. What I do is tiring for kids, and I do my best to find what's motivating and most fun.

S-Tuna · October 2012

-auntie-:
It might help to reframe your thinking around the philosophy of EI. Your IFSP is in place to help you learn to help your child. The therapists play a role to be sure, but under this service model you the parent are meant to be an active participant in service delivery. It's not about the therapist coming a couple times a week, it's about you building therapy into your day, every day.

I know this is hard, and that it's easy to be resentful of others who can just be a fun mom. It's not fair.

It would be best, if you could adopt some of this as a life style. PT can usually be inserted into a play activity; ask her PTs specifically how you can make the work you have to do together seem more like play. Make them show you how to tweak play into therapy.

You are right. We do incorporate work into play quite a bit. I go back and forth between feeling resentful of "having" to work during play and feeling guilty when we take a break from the work to just let him play. I need to get better at accepting that this is where we are. This is the way our life is going to go.

Thanks, everyone. I really appreciate this board.

duchess0727 · October 2012

You do need to find some balance and it is hard. We have a lot of "homework" and always have and we do the best we can to incorporate it into our daily lives and honestly that is the best way to do it because of lot of the development really has to do with basic daily living activities (eating, drinking, dressing, brushing teeth, going up and down stairs, etc.). But as a previous poster said, sometimes you really just have to allow your kid to play and be a kid and be a part of the family or they will miss out on other experiences that will benefit them as well. I remind myself constantly that I can't do it all and all I can do is my best to give her that time. My daughter is in school from 9 - 3 and receives therapy during 7 sessions a week plus 2 outside of school. She doesn't even have a threshold to handle much more - it is exhausting. So what we do during family time is simple things that help her with things she needs to learn at home or basic muscle exercises we can incorporate into family fun times. Otherwise, we just spend time enjoying our family together. Good luck! It is hard to balance!

Mrs. Stew · October 2012

S-Tuna:

You are right. We do incorporate work into play quite a bit. I go back and forth between feeling resentful of "having" to work during play and feeling guilty when we take a break from the work to just let him play. I need to get better at accepting that this is where we are. This is the way our life is going to go.
Thanks, everyone. I really appreciate this board.

This x1000000 is where I am right now! I don't have advice but you're not alone Tuna...message me whenever you want!

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