Wednesday, May 21, 2008

Advice Please

I was wondering if I could get some advice from you lovely people out there who have walked this road before me. In a couple of weeks we are having our Review with the school district on where Ian is at in terms of his progress in therapy. The main goal of this meeting is to determine what his therapy should consist of in terms of frequency etc. Ian's physical therapist has recommended that we switch from an every other week meeting to once a month. She said that Ian is doing so well in terms of strength and flexibility. My thoughts on this are that yes, he is doing well with his strength level but his two cousins who are ten and twelve days younger than Ian are sitting up on their own, Ian is not. Ian also still prefers to keep/turn his head to the right due to torticolis (spelling?) Ian also tested two months behind on the Hawaii Standards Test in the area of fine motor skills (by the way I don't like this test. It compares Ian with typical kids. Well, he's NOT a typical kid. Why should he be compared to one!?! Anyway, you can tell I'm passionate about that!)

To be honest part of me would welcome a once a month visit from Ian's team of therapists. They come on Monday mornings, ugh! Mondays are not good for me. I'd rather stay in my pj's all morning than clean the house for a therapy session! Also, one of the therapists isn't that great with Silvi. Silvi has said numerous times, "I don't like her!", when I mention that she is coming over. The lady is also very long winded!

The main point is that I want to do what is best for Ian. I'm just not sure what that is at this point. Any advice you could give me would be most welcome. Thanks!

13 comments:

Tricia said...

How old is Ian again? I don't remember, but I can go back in one of the blogs and figure it out. I am mostly just wondering! :)

First I wanted to mentioned that 10-12 days is not very long in the terms of babies and development--especially when you are comparing apples and oranges (typical v. DS). Just like you don't like the tests to compare don't bother comparing Ian to his cousins you'll just drive yourself nuts! :) (I mean that in the nicest way possible and ONLY because I do it all the time! Easier said than done!) Georgia's got a couple friends who were born within a couple weeks of her who are MILES past her in development. And I hate to say that as time goes on they go THAT MUCH FARTHER past her. But she's getting there.

Hmmm...in terms of PT. Can you change therapists to one who is less long-winded and better with Silvi? Silvi IS a part of this whole thing even if she is not the kid getting services. I dunno what to say, I used to think we needed all the therapy we could get (which meant 3x a week with different kinds of therapists) but now that I have had a couple weeks "off" I am realizing that maybe once a month (for each kind) is enough. I don't know that they taught me much week to week, but it's still nice to have someone to check in with.

It's really a personal preference/belief. And I suppose if they make a rec. for something other than what you want you'll have to deal with that.

I don't think you will be "a bad mom" if you go with less therapy. Even if it's in part because it's too much for your family right now. (Or on a bad day.)

Does that make ANY sense. Sorry for the book-length comment! Good luck!

T

Leah said...

When Angela was born, we had weekly EVERYTHING, speech, OT, PT, Special Ed, and deaf/hard of hearing was once a month. (This was before most districts had gone to a consultative model.) I had 5 kids in the house and I'm the worst house cleaner in the world. I literally had a path cleaned from the door to the living room. Had to keep the dishes clean though because they had to go through the kitchen. UGH!!! They were the bane of my existence. That said, I still loved having weekly sessions. It kept ME on track with stuff to work on with Angela. Comparing your child with typical kids is a catch 22. You need to know where other kids are in order to know if your child is behind. They have to be tested according to the "norms" or how would we know they're behind or not? But it's all very painful! It's like a verbal slap in the face when you're given the numbers. I've gotten very good and tucking those papers away so I don't have to look at them. ;-) It sounds like your GUT is telling you once a month is not enough, but your stress level is saying weekly is too much. Why not compromise and go to twice a month instead? Also, while you *can* ask for a different service provider, it's usually very difficult to actually GET one. Most providers cover a certain area in their district. But, we lived way out in the country and we had a summer staff person covering deaf/hard of hearing services. Brilliant woman was WHISPERING to the kid with a hearing loss. Yeah..got rid of her and got a new person to come in! Many therapists are very good about figuring out how to include siblings into the visit. Weather by bringing things for them to play with, or by having them "help" their sibling with things.

Leah said...

Oopps...forgot something. I know you or Tom have probably already written this before, but has Ian been seen by a ped opthalmologist? Torticolis is OFTEN misdiagnosed in kids with DS, when really the head tilt/turn is from an eye issue.

Chris said...

Annie, I am not that much farther down this road than you, but I'll put my two cents in anyway.

It sounds like you want Ian to be further along with his gross motor skills. You feel like you want to continue having PT once a week because you feel Ian needs it. My advice to you is to go with your maternal instinct and keep the PT at twice a month.

In my experience with John, when he is ready to reach the next milestone, he reaches it, and often it happens very quickly without much rhyme or reason. One day, Ian may surprise you. You may put him down to sit and he'll stay sitting--just like that. At that moment, you'll be so thrilled, and you'll start looking to the next milestone. One goal accomplished--time to move onto the next. At that moment, you will want the advice of the PT to help you to help Ian move forward. Think how you will feel if the PT isn't due to come for another 3 weeks?

From what I have heard, it is often hard to get services so I would be very hesitant to get rid of services that you already have--especially if you feel he needs them.

That said, I understand the stress of getting the house in order for the therapists visit and your concerns about Silvi. John had PT weekly from the time he was 6 months old. There were months when I felt like it was overkill; sometimes even a waste of time, but then John would have a spurt of development, and I appreciated the fact that we had therapists coming on a weekly basis.

Is it possible that maybe you could have Ian's PT sessions on different day? Is there a day when you are home with just Ian?

I know you will make the right choice for you and for Ian.

Chris said...

Hi again, just thought I would share this with you. As I was sitting here in my bathrobe typing my earlier responses, guess who shows up at the door? The speech therapist. We get speech once a month, but the ST was filling in for PT. PT always comes on Wednesdays at 2:15 so in my mind, that was when ST would be here today. I totally forgot that I had scheduled her for 9:30am.

Not only am I in my bathrobe and John in his PJs. I did not pick up the house nor was I home last night. While my DH did get the kids to bed, he did not feel the need to clean the kitchen (nor did I when I got home late last night.) I did managed to get the dishes in the dishwasher this morning, but the dirty pots were on the stove, my husbands beer bottle on the counter, and the breakfast dishes still on the table when the ST entered my house this morning. Who knows what she thought, but you know what, who really cares? She is here for John, not to judge the cleanliness of my house, and John had a great session with her.

OK, enough time on the computer I have dishes to do!

Elbog said...

These great Moms have covered it all. I just want to reinforce that:
You're the Mom - you're the one that knows Ian better than anyone - trust your instincts.
Family issues are important, too. You're wise to include them. We hit a point at about 24 mos. when 4 therapies a week were too much, too often. Ian's going to establish his own timeline - doing what's best for him means adapting to his abilities and willingness to move forward. Read the previous posts, there's a lot of great advice there for figuring out what works for the four o' youse.

Kim Ayres said...

Without a doubt, what's best for Ian is a mother who's taking care and looking after him.

First and foremost, you're a mother and, if Silvi is much to judge by, a very good one. Therefore, in times of uncertainty, trust your instincts. They will be far more accurate than a bunch of people who don't know Ian.

Ian will move at his own pace to a large extent. Meg was 12 months old before she sat up unaided, and 2 years before she walked. But as the average first steps for children with DS is anywhere between 18 months to 4 years, you can't judge by the standard of other, non-DS children, who are Ian's age.

There is also the whole family dynamic. As you know, life is not just Ian - there are 3 other people in your house who also need their needs met. And that includes you, Anne. And there's nothing wrong in that. We are all brought up in a particular environment to which we adapt and Ian needs to learn that too.

So Silvi is important, Tom is important and you are important as well as Ian.

Don't underestimate Ian's resiliance. For the most part, any child his age primarily needs love and attention, which you're all giving him.

Therapists can be very useful and you want to make the most of them, but they do have to fit into your family dynnamics too.

Another thing worth knowing, if you haven't picked it up already, is that rather than slow and gradual advancement, a lot of children with DS appear to plateau for quite a while and then suddenly leap forward. It's like there may not appear to be much change on the surface, but it's working it's way in the background and will suddenly manifest itself when it reaches a critical mass.

But ultimately it is about regaining your confidence as a mother, to know what is right. The DS part of Ian's life can seem dominating when you're unsure about everything, but don't forget 99% of parenting Ian is exactly the same as parenting any child. Don't be intimidated by the professionals.

Donna said...

Hey there! This may come after your meeting, but this issue is something that I am fairly passionate about. The first thing to remember is that no one is as invested in Ian as you and Tom are. People that come into his life generally have a perscription to follow that works for most kids. It may or may not work for your family. If it doesn't work for you, you need to be an advocate. As scary as it is, in 20 years, you will be the one to deal with what has happened.

With that said, if you think Ian needs PT every other week, keep it that way. You are the CEO of his IFSP. The therapists and members of the school district are your consultants and coworkers. There is another way to go about it though. Nick is now 4 and when he was young, we had a conversation about how Nick was moving. He seemed to move in the typical fashion. For example, he did not flop his legs out when he was laying down, he did not try to sit with his legs strattled. At that point, we just had PT once a month. We talked to the PT about Nick's goal, for example sitting. As soon as I felt comfortable with him sitting, I emailed or called the PT to find out what was next. She wrote "goal met" on the IFSP and we had a quick phone discussion on what was next. When she came next time, she showed me some techniques on how to do the next goal. I also used some books and the internet to get ideas for myself.

As far as the situation with Silvi, it is not a problem to ask the therapists to include her. IFSP stands for individual FAMILY service plan. The idea of them comming to your house is to involve the family. It is totally appropriate to tactfully as the PT to have Silvi sit behind Ian and help him roll a ball back and forth- if your goal is sitting. Nick's OT would bring extra pasting stuff to have Christine do the activities as well. One thing about kids with DS is that they are typically very visual, so copying their older siblings is a great way for them to learn. Your team should have a leader to it and that may be a great person to talk to about your concerns.

I totally get the comparison thing. It is really hard. Nick is 4 and I still think about it sometimes. There are charts for kids specifically with DS. When I really want to do a comparison or check where Nick is at, I have resigned myself to those. I also try to remind myself that even with typically developing children, there is a really wide range. In Christine's kindergarten class, there are kids who still can't write their names and they don't have any title after their names. We have to celebrate the sucesses and work on the challanges. Ian is an amazing kid - if you have not figured it out, I know him :) He is already super happy and developing his own little personality. With you and Tom guiding him, he will reach his full potential and isn't that what we really want for all of our kids? What I mean is to do THEIR best. Title or no title, each kids realm of their best is different and that is what makes life so wonderful!

Just to comment on an earlier entry about kids and behavior. My mom always tells me... guide them, give them incentives and punishments, love them and always remember, they will grow out of it. I love my mom!

Stay well!
Donna

Annie's Porch said...

Tricia- Thank you very much for giving me your insights. (Ian is 8 mos. old)

Leah- I appreciate your advice and validation. Ian is due for an eye exam in Aug. I'll ask about that. Thanks.

Chris- Yeah, I tried switching from Mondays but that was the only day they had available. I guess other moms didn't want Mondays either! Thanks for the cautionary tip on reducing therapy.

Annie's Porch said...

Chris- You have your priorities straight and you're right it's good to focus on our kids needs and not the cleanliness (or lack thereof) the house!

elbog- I really appreciate the validation and recommendation to trust my instincts. Thanks a lot for that!:0)

Kim- Wow, thanks for saying I'm a good mom. I really needed to hear that. Good point about Ian needing to learn that he is a part of the family and we all need to look out for and make room for each other. Good to know about the developmental plateaus. Thank you so much for your kind words and advice, Kim.

Annie's Porch said...

Donna- Hey there! I'm so glad you "stopped by". I was just thinking about you the other day and feeling so grateful to have you as my friend (and adviser! ;0) Great idea about using the phone/e-mail instead of a visit from the therapist. Good to know that kids with DS are often visual learners. Thank you so much for your validating words. I needed to hear those especially today. I hope we'll see you soon!

Steve said...

i would say to push for as much PT, or any therapy as you can get, even if that means cleaning the house each week before their visit. Also, I wouldn't give into the idea that they can only come on Mondays. Finally, I think you can always request for another therapit if you don't like the one you have. Remember, they are going to tell you certain things because it is some how best for them, not lways for you, your family, or your child.

Annie's Porch said...

Steve- Thank you for stopping by. I really appreciate the things you said. It is good to remember that the therapists may be looking out for themselves a little more than us. Also, unfortunately Mondays are the only time they have available in their schedule. C'est la vie!