Wish our therapists would be more realistic

[Anonymous]

I realize it's their job to advocate/offer services but sometimes I feel really annoyed by the fact that they don't seem to realize our resources aren't infinite. Our OT/speech therapists are both young and I don't know if have children. We take DS for 2 hours of therapy plus 6 hours of ABA per week and spend time weekly coordinating with teachers and other service providers. Outside of therapy we try to do the "homework" and we've done some groups too although I haven't found them that helpful for DS. My frustration is this - every time a therapist adds on another task to the week or suggests some outside activity, they present it as if we absolutely NEED to do it if we really want to help DS. Of course we want to help him but we have other children, work and other life obligations. Not to mention the finances. This week our speech therapist was pushing another social skills group on us. It's almost $400, it's not covered by insurance and it's at a time when our other two kids are napping. Of course I say all these things and then I get the "yes, but I think it would be REALLY good for him." Maybe it will maybe it won't but I'm the parent and I have to balance a lot of competing obligations so when I say we can't why don't they just drop it? Are they going to fund it and come over and take him back and forth? I had a similar conversation the week before about a summer camp that's an hour travel both ways so I'd be spending 4 hours in the car per day (2 driving there and back in the am and 2 in the evening) with two other kids under 3. I'd love to send DS and I've tried to figure out another parent to drive with or some way to get him there but there isn't one and I can't pay a babysitter for 4+ hours a day split up between am/pm so I can drive him. Why does that answer not seem to be enough? Am I the one not being realistic here? - signed a frazzled and frustrated mom!

[Anonymous]

It's super frustrating. You really have to just take over and decide what you can reasonably do. And then not feel guilty about it. Sometimes its easier also to do one thing really well (with all the homework and practice) than to do many things on the surface, but you get to decide. Don't let them rule you

[Anonymous]

We did what we could, like you and depending on the therapist declined or were just very blunt it isn't realistic/in the budget. Our SPL and ABA worked on social skills.

[Anonymous]

Anonymous wrote:I realize it's their job to advocate/offer services but sometimes I feel really annoyed by the fact that they don't seem to realize our resources aren't infinite. Our OT/speech therapists are both young and I don't know if have children. We take DS for 2 hours of therapy plus 6 hours of ABA per week and spend time weekly coordinating with teachers and other service providers. Outside of therapy we try to do the "homework" and we've done some groups too although I haven't found them that helpful for DS. My frustration is this - every time a therapist adds on another task to the week or suggests some outside activity, they present it as if we absolutely NEED to do it if we really want to help DS. Of course we want to help him but we have other children, work and other life obligations. Not to mention the finances. This week our speech therapist was pushing another social skills group on us. It's almost $400, it's not covered by insurance and it's at a time when our other two kids are napping. Of course I say all these things and then I get the "yes, but I think it would be REALLY good for him." Maybe it will maybe it won't but I'm the parent and I have to balance a lot of competing obligations so when I say we can't why don't they just drop it? Are they going to fund it and come over and take him back and forth? I had a similar conversation the week before about a summer camp that's an hour travel both ways so I'd be spending 4 hours in the car per day (2 driving there and back in the am and 2 in the evening) with two other kids under 3. I'd love to send DS and I've tried to figure out another parent to drive with or some way to get him there but there isn't one and I can't pay a babysitter for 4+ hours a day split up between am/pm so I can drive him. Why does that answer not seem to be enough? Am I the one not being realistic here? - signed a frazzled and frustrated mom!

Is this TLC? Just say no, and tell them to stop suggesting anything that requires you to spend even more money.

[Anonymous]

Anonymous wrote:I realize it's their job to advocate/offer services but sometimes I feel really annoyed by the fact that they don't seem to realize our resources aren't infinite. Our OT/speech therapists are both young and I don't know if have children. We take DS for 2 hours of therapy plus 6 hours of ABA per week and spend time weekly coordinating with teachers and other service providers. Outside of therapy we try to do the "homework" and we've done some groups too although I haven't found them that helpful for DS. My frustration is this - every time a therapist adds on another task to the week or suggests some outside activity, they present it as if we absolutely NEED to do it if we really want to help DS. Of course we want to help him but we have other children, work and other life obligations. Not to mention the finances. This week our speech therapist was pushing another social skills group on us. It's almost $400, it's not covered by insurance and it's at a time when our other two kids are napping. Of course I say all these things and then I get the "yes, but I think it would be REALLY good for him." Maybe it will maybe it won't but I'm the parent and I have to balance a lot of competing obligations so when I say we can't why don't they just drop it? Are they going to fund it and come over and take him back and forth? I had a similar conversation the week before about a summer camp that's an hour travel both ways so I'd be spending 4 hours in the car per day (2 driving there and back in the am and 2 in the evening) with two other kids under 3. I'd love to send DS and I've tried to figure out another parent to drive with or some way to get him there but there isn't one and I can't pay a babysitter for 4+ hours a day split up between am/pm so I can drive him. Why does that answer not seem to be enough? Am I the one not being realistic here? - signed a frazzled and frustrated mom!

You are being realistic. And they probably are too.

It is their job to help your child - and they are right that all else being equal more therapy and practice will help him.

Hear them out, think about it, and then let go of any guilt if you can't make it work. We are all doing the best we can, including the service providers.

My DC is older now and we are off the therapy treadmill but we were very diligent about home practice - for both speech and OT - as we hoped it would lesson or reduce the number of years he'd need the help and we'd be shelling out money and copays.

[Anonymous]

Big hugs to you, frazzled mom, 'cause I totally hear you. I have found this through the years with all kinds of therapists, and after awhile I really began to chafe at the pushiness of some more than others. Our abilities and resources are finite, there is no doubt. In your mind, figure out what boundary you're willing to go to, stop there, and don't let people budge you. At one point, one of our kids was on the docket for surgery and we were waffling about one of the issues involved and I had a practitioner snap at me, "Well, don't you want the BEST for him?" At that point, I would have given my left arm to make him better. Everything always looks easier from their perspective because they aren't living your day to day life.

We have three children, not all with special needs, and it always cracks me up how much they think I can alter my other children's existence to make all of this work. I recently decided to pull my daughter out of a private preschool because, among other things, the commute was just causing all kinds of issues for my other two kids that they didn't deserve – it was just all too much. Don't let ANYone shame you into doing more than you are able to do – do what is best for you and your family as a whole, a picture the therapists cannot always clearly be privy to, because in the end the sanctity and happiness of your entire family is more important.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I realize it's their job to advocate/offer services but sometimes I feel really annoyed by the fact that they don't seem to realize our resources aren't infinite. Our OT/speech therapists are both young and I don't know if have children. We take DS for 2 hours of therapy plus 6 hours of ABA per week and spend time weekly coordinating with teachers and other service providers. Outside of therapy we try to do the "homework" and we've done some groups too although I haven't found them that helpful for DS. My frustration is this - every time a therapist adds on another task to the week or suggests some outside activity, they present it as if we absolutely NEED to do it if we really want to help DS. Of course we want to help him but we have other children, work and other life obligations. Not to mention the finances. This week our speech therapist was pushing another social skills group on us. It's almost $400, it's not covered by insurance and it's at a time when our other two kids are napping. Of course I say all these things and then I get the "yes, but I think it would be REALLY good for him." Maybe it will maybe it won't but I'm the parent and I have to balance a lot of competing obligations so when I say we can't why don't they just drop it? Are they going to fund it and come over and take him back and forth? I had a similar conversation the week before about a summer camp that's an hour travel both ways so I'd be spending 4 hours in the car per day (2 driving there and back in the am and 2 in the evening) with two other kids under 3. I'd love to send DS and I've tried to figure out another parent to drive with or some way to get him there but there isn't one and I can't pay a babysitter for 4+ hours a day split up between am/pm so I can drive him. Why does that answer not seem to be enough? Am I the one not being realistic here? - signed a frazzled and frustrated mom!

You are being realistic. And they probably are too.

It is their job to help your child - and they are right that all else being equal more therapy and practice will help him.

Hear them out, think about it, and then let go of any guilt if you can't make it work. We are all doing the best we can, including the service providers.

My DC is older now and we are off the therapy treadmill but we were very diligent about home practice - for both speech and OT - as we hoped it would lesson or reduce the number of years he'd need the help and we'd be shelling out money and copays.

Not necessarily. They are making money for themselves or their team. We, too, got sucked into the overtesting, more therapy, social group trap. And our psychologist was skimming off of it the entire time because of course she ran everything out of her office. She also "managed" the other professionals to make DD paranoid. I said we wanted blind testing - she told the tester in from of a very young DD that she "was looking for X". Great. Now DD thinks she has X even before testing has begun. Then she insisted on the social skills group. It became clear within just a few sessions that the other DDs in social groups had much more serious problems than DD. When DD came out of "group" screaming about suicide because she was so young she had never heard of it and one of the other girls in the group brought it up, I said ENOUGH. Fired everyone. Got a professional tester and a proper diagnosis. trust your gut OP. And if you can't afford it, you can't afford it.

[Anonymous]

Op here - thanks all! I do feel guilty because of course we want to do everything for him but there are 5 of us in the family and I already feel bad that sometimes my other kids get the short end of the stick b/c DS requires more time and attention. It just really irritates me when they imply (or outright say) that we're not doing every possible thing for him. With 8 hours/week outside of school and additional services in school through his IEP, I do feel like we're doing as much as possible right now. If they want to come watch my other two kids and grocery shop, and clean and do laundry and make dinner and do all the other stuff I have to do in a day, then sure I'd love to take him to another group or two.

[Anonymous]

I often feel this way and it's without other kids to juggle. No doubt some of it because I'm a single parent and I have only so many hands, and lots of other must dos. I've arrived at being very blunt about it, after taking a while to learn what was realistic for me to accomplish and not, and the fact that getting a list of things to do, even with a "try as much as you can" just made me feel like cr*p because it wasn't ever going to happen. I've settled for "Look, I'm a single parent with limited time and resources. I've learned we can manage, at best, to do ONE thing a week to support the session. Please tell me which ONE thing you'd like us to do as a priority right now. Also, this lovely little newsletter of ideas is great, but unless you hand me a prepackaged bag of supplies for XYZ activity, I can promise you it's never happening. That's just reality." We almost always get the one thing, versus a list, now. We've rarely gotten prepackaged bags of whatever, but I get that, their intention and job isn't really to purchase my art supplies. But it did stop the push back. And I've been blunt about finances and or work/scheduling things too. Yep it'd be nice, but your 6 week camp that runs from 9-12 - nope, can't afford it and not even remotely feasible with my work schedule. Please do let me know if you come across a camp with full time hours and a lower fee and/or when you start accepting insurance. I'm sure there are people for whom that doesn't work. But it has tended to stop more people than my prior approach (maybe because they've just written me off as a parent who just doesn't want the best for my child?).

[Anonymous]

I could have written your post years ago. Sometimes they do it to truly be helpful, but sometimes they are required to push certain services and sometimes they are just referring to friends who refer people to them. I know this from an OT we worked with who used to work at a major practice.

We once had a therapist who had 4 kids of her own and one had special needs. She was great-top notch services and she knew we did not have a money tree outside. She taught us how to make things that could help and gave us inexpensive and easy suggestions.