Upset by OT group therarpy and parent child separation

[Clover Honey]

Hi,

I just got home from a disturbing OT therapy appointment through the EI program here.  We've been going to PT for about 6 months, what DS really needs is OT but is still on the waiting list for the initial evaluation.  Anyway, because there are kids waiting for an eval for over 9 mos to a year, they decided to create a group therapy to do a general eval and give us some things to work on at home etc.  It's run by the head of OT, and a few other OTs, and edus.  Anyway, after going for a few weeks, we arrived at the room today and it was the first day of "separation".  DS is 18 months old, just beginning to talk, not walking and with some kind of sensory issues but not fitting in with autism criteria.

I was shocked that they wanted the parents in a separate room - I wasn't expecting this and I just don't see how my DS was going to learn from new experiences while he might be upset that I was no where to be seen and I was taken into a room with the other moms and the head of OT (who I would have thought would be interested in working directly with the kids or observing) who gave us handout and described some therapies we would be trying at home.  I thought we were going to be taught - either directly or by observation, not with handouts sitting around a table.  When we returned to the therapy room at the end of the session, there was my DS all puffy eyed, red faced and wimpering, watching the door, sitting on an OTs lap during the goodbye song, which he always used to participate in happily. I don't hover or smother, but am usually around for him to glance at when he is unsure.  Today I was just flat out gone.

Anyway, my question is:  is there a reason for separation during OT for sensory issues (at 18 mos, and dev delayed at that)?  I just feel totally uncomfortable with this and am not seeing the benefit of it, for anyone.  At this point, I can't return to the sessions because I don't want to leave him alone.  I am also disappointed because today we were supposed to be taught the brushing protocol, and instead they tried it on him while he was alone - and we still have no brush or instructions.  Should I find another program?  There is a shortage of OTs here, and I'm not sure if there is anything else available. So frustrated!!

[Roar]

I can't say I have any answers, but I didn't want to read this and not post. Your little guy is certainly not the only one who is not ready to separate like that with a stranger at 18 months. I can see why you are upset. 

[stik]

Not to be excessively off-topic, but with a wait list like that, how is your EI program in compliance with federal law?  Children are only eligible for EI services until age three.  A waiting list like that means a lot of kids who need services will never qualify because they aren't evaluated in a timely fashion, increasing the burden on schools to address problems that could have been dealt with much more easily with appropriate and timely early intervention services .  Were you provided with any information about your legal rights?  You should have been given information about the timelines that are federally mandated for evaluation and services when you were first referred to EI.  Your "group therapy" for kids who have been waiting 9 months or more for evaluation sounds like a class action lawsuit waiting to happen.

And, I think it's highly inappropriate to separate young children from caregivers for therapy.  Intervention is dramatically more effective when parents are involved/observing and can see therapists use methods that help their child, because then parents can much more easily apply those methods in the child's day-to-day activities.  

[KCMichigan]

I would call and talk about the purpose of the seperation.

There is no reason that they could not 'teach' and model w/ the parents and kids at the same time (that is how we learned brushing/joint compressions, etc).

Our office had a policy of parent/child under 3 and then at age 3- gradual separation per individual case. One of my DD was noncompliant for feeding therapy when I was present and my other DD needed me in in eyesight for OT or could not focus. Under 3- they never split parents/caregivers from the child unless parent requested for the most part. I learned as much as DDs from watching and practicing.

[Momsteader]

I would have been upset as well! 18 mos with a child with special needs is far too young to drop off and mom just go! My ds was 3 when he started ST/PT and I was with him for all of the session for the first few months. I wasn't always physically involved, but I was at least in the room observing. Then, when he was comfortable with the therapists, I might step out and let them work, and come back near the end for him to 'show and tell me' what he 'learned' which was an important part of expanding his expressive language for ST. By the time he started OT at 3.5, he was familiar with therapy (we went to all therapies at the same clinic) and he was ready to go 'play' with her alone after the first session and practically threw me out as he had work to do! ;)  But, we continued the show up at the end and get the information/techniques to use at home and my ds telling/showing me what he learned and what he was to practice at home.

Definitely call and talk to them. I'd be calm and let them know that your ds was visibly upset, and you would rather stay in the room and observe until he was comfortable with the therapy. My guess is that if you stayed for a few sessions, he would rapidly get used to the therapists and be okay if you stepped out to listen in with the parent group if you felt you needed to or if they want you to hear that information as well.

[Clover Honey]

Thank you for the replies - I wasn't sure if I was being over-bearing or if my instincts were right on.  I don't know why I doubt them sometimes, they haven't let me down yet.  I allowed the trial of separation to see how he would do, and how long I would leave him before I went running back to the room and it seems like we both have about the same threshold.  So frustrating about the wait list; and there is no recourse at this point other than trying to force the state to pay for private therapy, which they can't do because there is no money left in either the state or fed budgets.  Bit of an update though - 

I received a call at home after returning from the group therapy session that DS's OT eval will be scheduled for next week.  He has been bumped way up the list because at his 18 month well visit last week, he had fallen far off of his growth curve in both height and weight so apparently this accelerates EI.  It's a good thing I mentioned his Drs visit to his PT, otherwise he'd still be waiting.  His eating issues will be addressed, finally, as this has been going on since he was 3 months old!  As an infant, the only medical intervention available to us was a g-tube if/when it became necessary (rant)!  My heart goes out the the other children on the list that have now been bumped down.

So, I no longer have a need to attend the absurd group sessions, and he will begin therapy soon.  I will be sure to tell my service coordinator why we are leaving the group, and why I think they are doing a disservice to the other children attending.  I think their OT department lacks experience, and I think their educators had better step in and re-vamp the group program.  As I said to my DH - even if some of the 18-24 month olds had no separation anxiety, why should they have to be stressed by the other poor babies in the room crying out of fear?  This is not an environment conducive to learning.

[insidevoice]

I have a toddler in various therapies. Right now, I am seeking a new provider for those services because they absolutely swear up and down that I need to leave the room for him to do the things he needs to do. We had been making great progress with me in the room with him, but I did put up a clear line that when he began to become truly distressed we needed to take a different approach.  After being reassured that he had done fine the first time we did this, I pointed out that I'd heard him screaming through the walls and out into a different corridor.  They explained that it was normal for a child to cry and scream in therapy because it is hard for them and because my son is lazy, and does not want to do the work, he was crying to get out of it. 

My anger at this approach and at trying to force children who already struggle to suffer to succeed is boundless.  It needs to be a team approach, and it is possible to engage the child and the parent in a way that is best for everyone.  At this point, I simply refuse not to be present with any child who is largely nonverbal.

[Momsteader]

Awwwh insidevoice that is so sad :( He isn't lazy! and it is hard! Of course it is :( I'm so sad to hear about therapists who think the kids can't advance with the parents present!  I know it was very comforting for my ds to have me nearby and knowing that I was okay with what he was doing.  I'm sure that once that trust is established between child/therapist that a child might work more diligently on task if mom is there and they are wanting you to see everything. I think my son did. BUT, he was very much comfy with his therapists and ready for me to not be there.  Do none of these providers have two-way mirror rooms?  Most everyone we worked with had this option! When I got back, the parent waiting area you could look in the door and see, but they couldn't see out. I could 'see' that ds was fine and sit and wait, or go in.

[Green mama]

My son was in outpatient OT from 12-18 mo.  Their philosophy was they gain more from the child if the parent was present, rather than spend the first 1/2 hour trying to calm the child's distress from separation.  

I agree with you completely, the current set up for your son is not a one-size-fits-all.  

[CarrieK]

It's a red flag when a therapist, any therapist, does not allow the parent or caregiver to observe.  You should not be feeling uncomfortable waiting for your child, wondering if he is ok.  Therapists should be educated and experienced enough to deal with parent(s) in the same room.  At the very least, if your son is not up to participating, the therapist could always act as "consultant" - giving you tips and tricks to try at home.  Therapy doesn't just end with the session - I usually think of it as a continuation of skill building in the home. 

I had a similar experience when my son was just 2 years old.  The whole "therapy thing" was new to me, and I did not feel comfortable with one particular OT.  DS cried with her and I felt she was really forcing him to do things he did not want to do - instead of gently guiding or trying different techniques (she kinda had a one size fits all therapy session).  After a couple weeks, I trusted my instinct and ended therapy sessions with her although it was very difficult for me to stand my ground.  In my personal situation, it was the right thing to do and we were on to the next OT.  I'm happy to say that over the years we have had some wonderful awesome OTs! 

[LynnS6]

I agree that it's simply not developmentally appropriate to expect most 18 month olds to function well without their parents. It is the peak age for separation anxiety. If this was a one-off where they were trying to get the parents information while working with the kids, OK. If it's their model for treating the kids, nope, it's not OK.

I will say that when our DS started OT, he did do better without me. But he was FIVE when he started.

[marilyna]

Good for you for listening to your instincts. 

My son is now 6 1/2 and has been in therapies for 5 years.  One thing that I decided after various therapists separated us or did things that made him cry is that I am the boss and my son will not be tortured or separated from me.  Period.   Any therapy that makes him cry is not going to be effective in helping him.  And if they don't want me to see what they're doing, I probably wouldn't be happy with what they're doing.

Not too long ago, we had an OT who insisted on taking my son into his room and shutting the door.  One day I kept hearing my son scream and say "I don't want to!".  When I went in there she had her legs over his holding him down.  I was very angry and fired her.