Advice on PT and/or EI please

[andrewsmom]

Hi everyone. I'm looking for some advice concerning Andrew's PT.
Andrew has had PT once a week for quite a while now. She has been out for 6 weeks because of an operation. EI didn't have a replacement therapist so I have been doing all Andrew's PT myself since the summer. (I don't have a clue what I'm actually doing).
Andrew is doing well. He is pulling up to stand on anything and everything he can. He has also started crawling on hands and knees(about 4 weeks now...Yea!!!) He will walk pushing something in front of him (his walker is what he pushes most but won't get in it himself... go figure)
His PT was supposed to start again today but called me last night (Sunday) to cancel and to tell me she didn't know if she was going to come back. She went on to say Andrew was doing so well she didn't think he really needed a PT more then once a month or just a consult every once in awhile anyway because he is "on his way".

Here's my problem... I think (and correct me if I'm wrong) NOW is the time he needs PT the most. He is soo close to walking but I haven't got a clue how to push him to do it, what muscles are his weakest, what exercises to do with him, or even if he is doing it "correctly". I had a consult with another PT awhile ago and she said he may need inserts for his shoes when he started walking because he leans on his ankles alot. Like I said, I haven't got a clue!
I'm just really upset because I feel like he's being pushed aside.

I called my insurance co today to see if they would cover PT for him somewhere else and they said no they would not cover PT until he turns 3.
I honestly don't know what to do or where to go. I really feel he needs help NOW.

Did any of your PT's stop coming once your child began to walk? It seems rediculous to me that someone that has low tone would not have PT, walking or not. I mean maybe I'm wrong or just not realistic but I would like him to have some type of PT or exercise program the rest of his life. Is it just me?? Am I just unrealistic?
I don't know... any help or advice would REALLY be appeciated. I don't know if this is how it is ... once they get so far, their job is done?

I think I'll go look up CC's post with her scream on it and add a bit to mine.
Thanks for any advice!
-Trisha

[marisa]

While it does sound like Andrew is doing well, I would think he still needs PT more often than once a month. Is he getting any OT? If my memory is right, I think Andrew is around the same age as Laura. She receives OT twice a week, PT once a week, ST once a month and is going to start Horse riding this week at once a week. Laura is not pulling to stand yet or crawling, but she rolls everywhere so she can get around well.

I would call you case manager and discuss it with her/him. I assume you have an IFSP in place, so you can use that to fall back on. I would not offer up the info that the PT said he is "on his way". What is up with that?? I also agree with you not knowing if you are doing things correctly. Several times I thought Laura was doing something great, just to find out she was doing it the wrong way and had to teach her the correct way. I would never have known this info if not for therapist telling/showing me.

Don't let him be pushed aside!! Make the calls and keep calling. I would not be pushy or nasty, just let them know you know what your son needs. I believe it is true with our kids and has been said time and time again ... the squeaky wheel gets the grease.

Marisa

[gloriaelias]

It is so true, squeaky wheel does get the grease. If you feel your son needs PT, keep calling until someone listens. I wish I had done that with Jacob, he might have been walking by now. Don't let their reasoning steer you away and don't let them talk you into doing what they want. You know your son and you know your gut feeling.

Good Luck!!!!

GE

[Debi]

Hmm if PT services are in Andrew's IFSP than having this PT call and say he is "close enough" just won't cut it.
I too would be calling my service coordinator ASAP on this.. not just for right now but for all the PT Andrew has missed.. and I would be asking for compensatory PT as well.
Gabe did not get PT services after he started walking at 3 and I really regret I did not push harder for this (Didn't have Uno Masers around to tell me any different!!). It's not just walking.. there are things like balance, climbing etc etc. all of which are valid PT goals and which Gabe NEEDED help with.
None of your concerns are wrong or unrealistic. However I think your PT calling and saying she can cancel or just put Andrew on a "consult " basis IS wrong . These are contracted services and if he has them in his IFSP they need to make sure they are provided.
Good luck.. keep us posted!!!

[CC]

Just my thoughts but YES PT is very very important at these young years. Geez Chris who actually shines in this area is 12 and still gets it one time a week for 30mins. Till last year he had it twice a week, 30min. each and I never ever had to ask for it.

Walking is not the end all, there is good quality walking, KWIM, skipping, running and YES I bet your son will do all that without PT BUT the quality of it will suffer, now that is just my opinion If you truly disagree with what they are offering, you are entitled to ask for an independent evaluation and see what they say.

And not for nothing BUT by law they are entitled to make up the times they missed Andrew's PT sessions even if that means you go to a private PT and they pay for it, its the law and I know it to be true cause I have had it done here for my guy.

BEST of LUCK and I will SCREAM with you

CC ~

[meghans_mom]

I agree...push for the PT. It is ridiculous to say he is doing so well or on his way that he needs it so seldom,
like the others said there is so much more. you want him helped so he can walk w/ the correct gait. get into position properly (our kids "cheat" when doing certain things). Then there are stairs, negotiating curbs, kicking, bending, jumping, climbing onto & off chairs/etc.
Playground stuff...climbing the ladder to the slide.
Trunk strength (my PTs made/make MM do sit ups, trunk exercises on those big exercise balls), balance and righting reactions when the fall *** this is ESPECIALLY important once they start to stand/walk -
Even throwing & catching are PT stuff. My PTs do wheelbarrow walking & other things to strengthen the arms;hands, upper body.
There is soooooo much to work on!
All of this stuff ties into getting around in the everyday world and will impact OT skills as well (arm/hand strength) for holding a crayon/pencil.
PTs can also work with or without the speech therapist to make sure the child is properly positioned in a high chair for feeding/eating...this can help improve w/ speech and feeding.
At the very least you should receive PT a few times a month so YOU can learn what to do with him.

Please don't think I'm preaching....I am trying to give you ammo so you can go to the PT & EI coordinator with all the things Andrew still needs help with. Don't let them get away with this.

Also, see if there are other childhood centers that offer PT thru EI. Call your EI coordinator and see if she has a list of PTs. Our county contracts out with school district PTs who work on the side to off therapy.

I don't recall Andrew's age but Meghan from 1-3 received 2 hour sessions of PT a week. She was walking at 18-20 months. Pulled to stand at 1 yr. Now even at 4 1/2 she gets 1/2 hour a week but her teacher does alot of PT stuff with the kids in class and she goes to a dance/movement class w/ a therapist once a week as well.

Best of luck and let us know how you make out.
hugs, laurie

[carolyn]

I am going to chime in on the other side. John strength has always been motor skills. He walked by 14 months, and he always been well coordinated. His PT was dropped when he was around a year as there where just other areas which needed more time and attention. I have never wanted to spend more time than necessary in "Therapy" and so I was fine with dropping the more formal PT sessions and just included PT in with the teachers home visits. For me it is about balance - Once he started preschool he got his PT/OT at school, and now in Kindy he gets it there.
Hope this is helpful.

Carolyn

[andrewsmom]

Thanks so much for all your good advice. I never even thought about climbing, jumping or getting on or off furniture etc. I called EI this morning and they said to give them until Friday and they would get back to me.
You know..... I read all your posts all the time on school issues (I don't reply often because I'm not there yet and have no "words of wisdom") And I see how hard some of you have to fight to get issues resolved. I have to be honest here and say I don't really know if I can do it. I was practically in tears on the phone this morning and this is a small problem compared with what some of you go through.
Where's the "opt-out" sheet? Can't we "opt-out" of some of these problems? I need a sheet! Where's the sheet!?!
-Trisha

[Cathy]

Trisha,

Katie's PT stopped coming after she started walking which I thought was a mistake. Katie was 25 months old when she stsarted walking ... The next fall when she was almost 3 the school would not give her PT services (They said she didn't need it to get an education, until she started falling...because she was flat footed and had no muscle tone in her ankles or trunk. After they finally allowed her to be evaluated (The following spring), everyone agreed.. she needed PT.

So I know I didn't answer your question...but I feel that PT never should have stopped after she was walking. Katie is almost 5 and still gets PT once a week... and has orthotics to help strengthen her ankles... they are working great.

Do not give in.. I would think that the people providing her PT (EI ) should have a back up PT.. I mean, Andrew cannot be the only child received PT??? Just sounds odd to me.

[meghans_mom]

Hey Cathy....Katie's almost FIVE....<big smile>
laurie

[Cathy]

LOL Laurie.. I was thinking she is 4 gonna be 5 and I typed in the 4... duhhhhh.. I have modified it.. now noone will know what the heck you were talking about.

Chalk it up to old age and stress....

LOL.. For the record.... KATIE WILL BE 5 iIN NOVEMBER!!!!


Cathy

[andrewsmom]

LOL Cathy... I have a hard time with ages myself!
Yes.... there is only 1 PT for EI in my area. I asked today if another PT could come from another area and she said something about this EI only covers a particular area. I live in a VERY small town and I know some people in the next town over that have a different EI team altogether, different therapists and coordinators. I'm not sure where the "line" is drawn, but I'm also having a hard time with this because I was under the impression EI was through the STATE not individual towns or areas. Andrew's ST is currently on maternity leave and another ST is covering for her and she is from almost an hour away. But that's another story, I'm just concerned with Andrew getting and keeping PT right now. I just think it's extremely important at this stage for him, and as some others have pointed out I don't want PT to stop when he walks because there is still so much to do.

I feel bad for your daughter that PT was not followed through. It's so hard to know the "right" thing to do for our kids. All we have to go on is what they tell us.
I don't know why, but I feel very strongly on this. I guess I don't want to look back and say "geez, if he had PT he would be doing this or that...KWIM? I'm not a fighter by nature but I can't just sit by and watch them push my son aside.

I guess I will wait until Friday and see what they come up with. There's nothing else I can do right now.
Thank you all for your support!
Trisha

[Debi]

Trisha~~this is why we have Uno Mas cause we parents NEED support!!!
Please do not feel inadequate to the task of advocating for Andrew.... like I say I wish I had known a LOT more when Gabe was in EI and I hope you will always ask for some support if you feel you need it. Doesn't matter if it seems like a big issue or a little one to you lol one of us will always be happy to chime in.
CC writes that "not for nothing it is the LAW for them to make up any and all PT Andrew might have missed and she is so right about that. I truly hope you can get them to fulfill their obligations. Availability of the PT or ST is THEIR problem ; not yours!!

[Jessie]

Trisha,

I'm a little late adding my two cents in on this one - and I pretty much just agree with everyone else.

There are quite a bit of things that did not get carried out with Jason, PT being one of them. We think of him as being strong as an ox with no PT issues, but then someone pointed out to us that he two-steps when he descends stairs. He will run up them, but he has to touch each step with both feet when coming down. OK, we felt extremely stupid when that was pointed out to us. So . . . I know exactly how you feel about not really knowing everything to look out for. He also does not hold a pencil/crayon correctly either which should have been corrected a long time ago with either PT or OT.

Keep pushing . . . and sorry there is no opt-out sheet! With the support of UNO people and just having to go through these types of things, you will start to feel more confident about your advocating role. I won't say it gets easier or anything silly like that, but the more you know, the more confident you will feel.

Let us know what they say on Friday!


Jessie