why do some therapist know so little about obpi

[carron]

I go to O.T. once a week with Thomas. We drive 2 hours to get there. I saw a doctor the other day and he suggested a P.T. that is closer to were I live. Thomas is developmentaly delayed by 5 months as far as motor skills. So We go today and I was shocked to find out I new more about obpi than she did. I know she works with the whole body and not the arm. She was so hard on him and wanted me to wait outside and said they would do more without the mother in the room! NOT THIS MOM!!! He is only 9 months old he is my baby and I know more about this than you! We talked for a while about things to do to help him sit. But I relized she did not have a clue about obpi she has seen only 2 kids with it and they were not baby's one was 2 and the other 4. She ask me for more information on it and how I found TCH. This scared me...... How do we get this out there for therapist and doctors this is not just some thing that is going away this is there for the rest of there life......Thanks for listening

[francine]

It makes me cringe when I read that therapists want to kick parents out of the room. One of the most important things that therapy did for us was that I learned what I can do at home for Maia...I watched what the therapists did and followed suit at home. I bought all the toys, the tools, etc. You only have therapy one or two hours a week - but what about all the other hours possible for playtime during the week. Just about any toy can become a therapy toy - but you have to learn what type of play generates what type of movement, etc.

The other reason I don't like leaving the room is because we have experienced some therapists lazying out with communication, with the therapy itself and even in how they treat your child. We actually fired one for mistreatment - I went down the hall to get a drink of water and came back to find the therapist picking Maia up by her affected arm while she was tantrumming. For any therapists reading - I know that like any other profession there are good therapists and bad therapists...but how is a mom to know if their therapist is good or bad? Our kids were already abused by a medical practitioner... it's not so easy to trust after something like that happens.

Another reason is that the therapist needs input from mom - what is baby doing now? what is baby having difficulty in doing? How is she/he going to get that information unless you are involved.

One thing this injury teaches us is to be major advocates for our children.

Stand your ground Carron!

About the lack of bpi knowledge...

Carron - there was just a therapist's conference at TCH - maybe they taped it and will have tapes for other therapists to get?

Also - you can print all the stuff from awareness (or use a copy of the Outreach Special Awareness Issue)... good sheets would be the Margaret Storment Therapy Protocol page.

-francine

[Jallie]

There are also workshops and clinics that can up on BP for OT's & PT's. My daughter's OT just flew to Houston with us to attend a weekend workshop (I was able to attend Sat.), she also stayed for her eval. on Monday, was able to observe surgies and follow the team for clinic. You could call some of the BP Specialty Clinics and ask if any workshops are up-coming. There is also a ton of literature on the Awareness sections on this site. I would also insist on staying through the session. If the PT is not familiar with BPIs, then you need to make sure nothing is done to cause further harm. And as Francine stated, that's were you will be learning, so you can continue therapy throughout the day and rest of the week. Best of luck.

Julie Wolfgram

[Bridget]

We have moved around a bit since my son was born eight years ago and have met many many therapists. It has been very very rare to find one that knows more than just a little bit about bpi. However, it is the attitude of the therapist that makes the most difference, rather than their knowledge base to begin with. Some of the best therapists we have worked with knew little about bpi to begin with, but were open and excited about learning more.

I'm always so happy to see therapists contacting UBPN to learn more because they have a patient with bpi that they want to do the best possible things for...that kind of attitude, of "If I don't know, I will find out" really impresses me.

Here in Phoenix we are lucky to have several therapists that are very caring and interested in learning about bpi. In fact, their dedication and interest has resulted in the annual AZ PT Association meeting being focused on bpi! Think of all the therapists that will be learning about bpi! I am very excited for our state. Perhaps if you contact your state professional therapy organization you might be able to work with them in a similar way? I will be glad to put you in touch with the therapists here who organized the Arizona meeting.

Take care,
Bridget

[Joy in FL]

Good job on holding your ground Carron! There is no reason for you not to be in that room with Thomas.

I agree with the statement that the "attitude" of the PT is important. Even though BP is our lives because of children or our own injury, it is rarely the PT's, Dr.'s, or hospitals. If she is willing to learn more in order to treat Thomas properly, then great. However, I know I would be concerned if she was/is hard on him perhaps she is not the PT you need.

After my accident I had therapy that I believe made my injury worse. It is important to be educated and it is equally important to be comfortable with whoever you decided to go to for PT.

Good Luck
Joy

[TNT1999]

Hi, Carron. I think it'll be much easier on you if you are successfully able to eliminate that 4-hour roundtrip commute, so I hope you can get a successful relationship established. I agree with Bridget's post about attitude. I think that says a lot that the PT asked you for info. It shows that she respects you and the fact that the parents are usually the most knowledgeable BP experts involved in the care of their specific child. It also shows her humility, not being afraid to ask for info. and willingness to learn. I once talked to TCH about the importance of BP experience with therapists. They said that from a therapy standpoint, a BPI is pretty straightforward. However, what they said is important (and I agree) is experience with babies / children. It's usually pretty easy to tell how experienced health care professionals are in that area. I'm not sure what you mean by her being hard on him as he is only 9 months old. That sounds a little frightening. I think that's great that you stood your ground about staying in the room. I think that's the way it s/b, esp. at that young age. As Fran pointed out, it's important for you to learn what to do at home. I think it's also so important to look at the entire well-being of the baby/child, and not just the arm. I think that therapy for many children would likely be more productive/effective w/o the parent in the room, but at what cost? Perhaps they will do what the therapist says b/c they're afraid to do otherwise. I have always been with Nicole during all of her therapy sessions and would'nt have it any other way. Sometimes I leave the room momentarily, but that's it. Now that Nicole is older, I have even recently taken the liberty to give her a few brief time-outs during the home therapy. At that point, she'd been acting up so much that she wasn't doing any productive therapy anyway, plus she needed to know that it wasn't a time when she could just act out for an hour. I even know of Moms who have briefly nursed during therapy. Just follow your heart and you will know what to do. I would prob. give this PT another chance (as long as she's not being so hard on him that you're uncomfortable with going there). She knows where you stand now and she's willing to learn more about BPIs, which is great. I usually give a BP info. packet to all of Nicole's new therapists. I hope this helps. See you tonight? -Tina

[carron]

Thanks to all of you. I have a handful of stuff to give her next week and a long talk so I will keep you updated on how it goes thanks for the support!!
carron

[Sarah]

A friend with a disabled child of her own recommended that I contact the early intervention program in my county. They have PTs and OTs who work with children under the age of 3. The program is state-funded and care/treatment is free. The therapists even come to your home. My daughter (7 weeks old) has been working with them for about 5 weeks, and I'm really pleased with the work they do and their knowledge.

In Ohio, the program is called "Help Me Grow" -- I'm not sure if it's the same in every state, but I think there should be an equivalent. Try calling the Health Department in your city or county. They should be able to point you in the right direction. It's a great resource.

Good luck!

[claudia]

I want to respond to the therapist wanting you to leave the room...I have always stayed with Juliana during her therapies. She had some separation issues and I didn't think that therapy was the time to address them. However, some kids perform better if the mom is not in the room. Although I can be around when our OT is working with her, Juliana misbehaves when the PT comes. Our OT has been with us since Juliana was 2 months old (she is now 27months old). We have done therapy at facilities and at home. The PT is new and is the latest in a string of PTs who either left EI or were poor therapists. This PT is wonderful. However, Juliana is trying every trick in the Mommy book to get out of doing the difficult balance work she doesn't want to do. I have started leaving the room and doing the laundry...I can walk by and see what is going on and we take a few minutes at the end of the session for her to tell me what she did and how I can work on it with Juliana. I wouldn't have left Juliana at 9 months, because she needed me so much. But I know people who do. If you decide that you want to give it a try, ask them if there is a viewing window, that way you can watch. Also, find out if there is an Early Intervention or Birth-3 program where they come to you. That way you can do laundry and do therapy!! BTW, we can educate the therapists. One of the best therapists Juliana had, knew very little about bpi, but she learned, and we do miss her. Hope it helps, Claudia