Early Intervention: Parent-centered team

Even though we are just outside of the Early Intervention system, since Braska turned 3 in November, I still get a lot of contacts and questions about the differences in EI services in different states and even other counties in Missouri.  Ria has been communicating with someone about this and posted their conversation on her blog today.  It sounds like this mom that Ria has been talking to has been put into the new model for EI that some places are transitioning to. She asked for some input into our experiences.

In St. Louis County, next door to ours, the First Steps Program has been trying out a new parent-centered team approach with new parents and transferring families.  From what I learned via word of mouth from a few in the administrative side of the system, St. Louis County agreed to be part of a testing or trial program with this new approach.  So far, I’ve not heard many families who are pleased with it, unfortunately.

To contrast the two, let me first summarize our experience: Braska had in-home therapies with First Steps from the time we moved to Missouri when she was 18 months old.   She had weekly speech therapy (ST), occupational/feeding therapy (OT), physical therapy (PT), and she also was seen by a nutritionist/feeding specialist due to her G-tube and difficulty gaining weight.  We made some adjustments to these over the past couple years and changed OT to every other week for a while, slowed ST to every other week for her last 6 months in EI since she was so self-motivated and ahead of the curve in her speech skills, we had PT at Braska’s school for a while, and we changed the schedule for the nutritionist as well.  But even in all this, we still had each provider of their particular specialty coming to treat Braska hands-on. 

When Braska turned 2, she went to what I called “pre-preschool” for two hours each Monday.  The teacher was a developmental therapist (DT) and it was a great experience.  Braska loved it, she learned a lot, and I firmly believe it helped her with the transition to preschool when she turned 3.  This was an added benefit to the home-based therapies, but I wouldn’t want to have it be the only thing.  I wouldn’t have wanted a group setting with one therapist to be her only treatment each week.  In some cases, I’m told that’s happening.

The guru for what is called the “team approach” around here is Robin McWilliam, Ph.D. (He has a blog here if you’re interested.)  He’s widely known in the field of EI for promoting what he calls a PSP or primary service provider model.  My paraphrase of the model, combining what I’ve read and what I’ve heard from parents who have been in it, goes like this… There is a team of providers—PT, OT, DT, ST, etc.—who meet regularly to discuss little Suzy.  They are all involved in working on her IFSP goals and they are all familiar with her.  BUT not all of them have met her, and in many cases they may not.

The feature of this model, also called the transdisciplinary model, is that there is one person identified as the “primary service provider (PSP)” and that person is who sees Suzy in the home regularly.  That person conveys all the instructions and thoughts or concerns from the team.  The PSP is usually the therapist who deals with the child’s most delayed area, as far as I can tell.  For instance, if Suzy is 2 and she walks well and eats well and can scribble, but she doesn’t use words yet, she will probably have the ST be her PSP.  What that means is that the ST will come to the house weekly or biweekly and work with Suzy, but she will not only do ST but will also address concerns in PT or OT areas also.  The PSP will research and discuss with the other team members issues that come up and she will then report back to the parent.  But all concerns about any modality will go through the PSP—the ST in this scenario.

To me, it’s clear why this approach is frustrating for a parent.  What if my child has two areas that are in great need of work?  What kind of delay in answers must come when a parent must ask an ST about the inversion of her child’s ankles and wait for the ST to talk to the PT and then get back to the parent?  Wouldn’t it always be wiser for the provider who is offering the advice to be the one actually seeing and working with the child?  From what I’ve been told, parents receive a lot of handouts and information for where to research and find their own answers for issues that might come up.  This is better than nothing, maybe, but it still pales in comparison to the idea of a person, trained in THAT field, observing the child and discussing the plan with you.

I’m told by those who know these things that being in this trial group is not mandatory in St. Louis County, though they don’t tell you that, and that you can opt out of this team approach.  But last I heard, they were putting 1 out of 4 new families, either by birth or by transfer, into the new model.  And there have been quite a few unhappy families.

We’re just one county over, and we did not participate in this model. I’m thankful for that, though I’m told that all of Missouri may end up going this route soon if some people in high places have their way.  We’ll have to see.  I hope that’s not the case.

I can’t imagine having to deal with one person about all our issues…G-tube, no/limited oral feeding, not walking, and very delayed fine motor.  I can’t imagine the strain on any therapist who would have been put in the position of our PSP.  I can tell you that I wouldn’t have been fun to be around much after about a week in that system.  It just doesn’t seem like the best interest of the child is in the forefront in this system.  Maybe some like it, maybe some have had success, but for a child with multiple delays and challenges, it just doesn’t seem to make sense.

Have you had experience with this new approach?  Thoughts?

More visits with friends

A few weeks ago, we went to see my friends Connor and Lucas.  They used to live in the town where I lived when I was a tiny baby.  Now they live in a different place, just like us.  But a different different place.

So we went to see them and play for a couple days.  They have the BEST playroom and SO many toys!  And they also have the best mommy and daddy for reading books!  Mr. Matt and Miss Nico read lots of books to me and KiKi, and I love books, so that was my favorite part.

They also have a chair I call the thinking chair.  Like Steve has on Blues Clues, you know.  This is me showing Mommy how I smile.  She says I need to practice a little.


Here’s KiKi playing in the playroom.  She had a lot of fun in there.


And before we left, all us kids got on the couch for a picture.  Mommy and Miss Nico took a bunch because we were being a little silly and not listening all the time.


Then Connor took a turn.  He’s pretty good!  

And Miss Nico helped Lucas take one, too. 

We had fun, guys!! Thanks for letting us play and feeding us lots of yummy food!  We can’t wait til we can play with your new little sister! (That’s what I hope it is…the new baby.  They need a little girl like me!)

Chicken broth rocks!

I got my Wii Fit in today--a little yoga (warrior, sun salutation, etc) and some strength (lunges, etc), and some step. The step was a bit more challenging than normal because I was holding a very feisty and unhappy-when-not-attached-to-Mommy 11-month-old. It made it just that much more effective, right?!?

Another day down with no cheating...I'm not even licking my fingers when giving the girls meals, even tearing up pizza for KiKi. That's something. Because I'm horrible about nibbling while I'm feeding them. But nope, I'm all in. Well, I don't know if you can say that just 2 days in, but still. I'm impressed with myself.

I got very hungry today, but I made it. We were very busy with all the aforementioned running around, but tonight I needed something. So--with the docs approval, never fear--I had a cup of hot chicken broth tonight, and it hit the spot. A little something to do with my hands and nice and warm to boot.

It would have been nice if it were crunchy or meaty or sweet or anything really, but it was successful in keeping me from looking for something else. So it did it's job.

Oh, and Cate--Great ideas, the schedule is pretty fixed. Lunch time is not flexible, some days M stays at work, but we try not to do that more than we have to. I have wondered about doing a 1230 lunch, which would be great, but it hasn't been possible yet, and probably won't be. The girls are asleep til we get them up to put them in the car to take M to work, and I can't hardly stand to get them up earlier. They won't eat for a while after they get up anyway. So we'll have to deal for now and figure it out as we go.

And no, this won't be my only blog topic, but it's new and I'm trying to stick with it... so bear with me. I'll probably be doing little updates on Twitter (which is now in the right margin) and spare all you blog readers from the boring blather.

Last notes on Day 1. Welcome Day 2

For Maggie M--Those cattle ranchers should be so darn proud of you!!! :o) Since I'm following the docs orders at this stage, he said no red meat. None. And he encouraged me to make that just part of the new norm as well. We'll see about that. I love a good steak or vegetable beef soup with nice big chunks. (A certain mother-in-law makes a very nice version.) And a big juicy burger with all the fixin's. Yum! But for now, it'll be no beef. I even gave away all the frozen beef that I had so others could enjoy it.

For Mom--No, there will be no deer. Period. Not now, not ever.

As for day 1--I made it. I got it all in. Mostly. The chicken and broccoli were good, some of the best chicken I've made, thankfully.

With a little assistance, I cleared out the pantry and fridge/freezer of everything that is not something we can eat (I kept a little good stuff for M...he's not really 100%, and he doesn't have to be) and not something Kinlee can eat. Otherwise, it's gone. I ended the day not feeling well, though I don't think it was food related. But it was no fun, so I went to bed early.

Mornings are hard, as we get up, get girls up and changed, load everyone in the van and take M to work. Then we come home, unload girls, feed them, get them dressed if we didn't get to do it before the work drop-off, load them up again, and leave (all in less than 30 minutes) to take Braska to school. So by the time I get home after that, it's almost 930 and I haven't eaten yet. I'm not overly hungry, but it throws the whole schedule of the snack in the morning and a decent lunch time.

As a point of reference, work is 12-15 minutes each way (only 3 miles) and school is 9-12 minutes each way (only 2 miles--gotta love the city).

Of course, lunch is another issue. I pick Braska up at noon, then we sometimes come home (having only about 20 minutes before leaving again) or we spend that 20 minutes finding something to do in the car until we have to head over to pick up M for lunch at 1. Then it's home, feed girls if they haven't eaten yet and get Kinlee to nap (if I'm sending the van back with M). Or the girls and M get lunch while I do the feeding for the little ones. Then it's time to load up again and take him back by 2. Then it's home, unload girls, get girls to nap, and then I can eat. Again, not ideal timing.

But it's easy to see there why our eating habits are bad, and they have been forever. We eat on the run ALL the time. We never sit at the table, the girls are in their chairs and I'm feeding them while M is in the living room or downstairs or doing whatever. I eat a bite here and there, or I eat in the car. If I do eat at home, it's standing at the counter or in between feeding one girl or the other.

I realize some of you have conquered these issues of juggling kids and husbands and families and food and even work. My hat's off to you. We've got a long way to go.

For now, it's time to get my oatmeal and egg whites (which I am now eating from boiled eggs...can't do the scrambled). Maybe I'll get time for a shower before I need to go pick up Braska. A girl can dream.

BrocChick-O-Licious

To answer a few questions…

It’s not just for 7 days, but I’m following it exactly as prescribed for 7 days and then we might alter a veggie or two, add a healthy something here or there. But overall, the goal is to make something very close to this my new norm…for quite a while.  It’s going to be a long road.

The important parts according to my doc, who is a fitness/health nut, are to drink the water right before the meal, like all at once.  Then for lunch and dinner to eat the veggies next, then the meat.  The high-fiber broccoli helps me to feel full.  And though I like broccoli, 2 cups is a lot of broccoli!

We’re still doing Wii Fit Plus, but I’ve had a few days off.  Lots of evening activities and by the time I get home and put the kids to bed, I’m in no mood for listening to the little voices talk to me on the Wii.  I’d like to be able to do it in the morning, but scheduling is difficult with work and school drop-offs, etc., and tiny hands interfering.

We’ll see how it goes.  I just baked a bunch of chicken so I’m good for a few days of meals.  I like that part, not much cooking!!  I divided it up in 4 oz pieces and it’s ready to go, about 4 days worth for me and M.  I plan to get some salmon fillets too, they are yummy and come in 4 oz fillets, nice and handy.

This morning I learned I don’t care for egg whites scrambled.  We might do some boiling and I can eat them that way, sans yolks.  I didn’t quite get all the oatmeal down, but without the butter and brown sugar, it sure lacks something!  A little Splenda and cinnamon and it was almost ok.

It’s 2:30p and I just finished my lunch, it’s been one of those days.  Running and picking up, dropping off, feeding kids, etc.  But the 2 cups of broccoli wasn’t bad at all.  And I even ate it straight steamed, no seasoning and no fats added, and it wasn’t bad.  Who knew under all that cheese sauce broccoli was good on its own??  (I kid, I like broccoli almost any way it’s presented.)

I’ve been texting Melanie and Julie much of the day… we’re a good team so far.  Melanie is our champion, having been on this path for 3 years and having some stunning new skin to show for it!  She’s really doing this for the moral support, and because it is not far from her “new norm.”  She’s pushing me and I’m glad for it.  Who would have known after 18 years this is where we’d be, Mel??

So feel free to join in if you’re game.  I’m only 2/3 of a day in, but I’m feeling pretty positive at this point!

9 months

These photo sessions are getting a bit more difficult. Before I could get the first shot, she had a letter in hand. (Don’t mind the diaper that’s a little too big… ran out of our normal kind.)


Then Mommy took it away in an attempt to get a pretty shot. Yeah, that worked well.


So I gave up and let her go at them.


Highlights this month: She’s finally cruising.  It seems she took a little break in her speedy development between pulling to stand and cruising.  That’s ok with me, but now she’s on the move again.  Several people are betting she’ll walk in the next 6 weeks… I’m not sure, but it wouldn’t surprise me.  She loves to walk with two hands held, but she’s hesitant with just one.

She’s enjoying feeding herself, prefers it BY FAR to being fed with a spoon.  She likes all kinds of veggies, bananas and apples, multigrain fruit bars, all kinds of crackers, breads, puffs and cereals.  But as for *real* food, we’re struggling because we’re real-food challenged around here.  We need to fix food she can eat, but that’s going to be a big change.  It’s a process to eat less processed foods.

She’s working on teeth 5 and 6 right now, on either side of her lower front two.  Here’s a peek at 5 of them. 

The uppers are through, one more than the other, and the 6th tooth is just finishing cutting through.  How painful must teething be?!?

In the last couple days she’s decided she wants to clap, so that’s fun.  At first I thought she was trying to sign more, but it’s evolved into a flat-handed clap, so we just chime in with “YAY!” whenever she starts a’clappin’. Here’s a few seconds of her showing her new skill, though a little dark.

8 Months

Once again, we're here to mark another month. This will be quick since I'm borrowing M's computer again, and I don't have the same little gadgets I usually do. (Blogger is hard sometimes! Relatively, of course.)

Before baths this morning, we snapped a few pics. These little shoots are getting tougher as we go. Lie still?? Yeah right.


And Braska wanted in on the action, so in she went. Hugs and kisses are always first on the docket for her.


Then KiKi returned the favor, as she usually does, by pulling hair. Hard.


Then they were both up in about 10 seconds, ready to go. So to the bath we went.


Highlights this month: I can't even keep up. I really need to document better. She's eating pretty well again, after her little phase. She much prefers to feed herself, and gets frustrated when she can't do it all herself. But really, pureed foods, at this stage and self-feeding?? I don't think so. We're doing alot of little "meltables" and such, and she's quite good at it.

Today, she did her first cruising down the side of the couch. She loves to pull up on anything at all, and she really likes the walking toy also, and spends alot of time going around with it. Crazy girl, I just can't get used to this kind of skill with motor. It's so amazing to me. She is mimicking a little with sounds, mostly da da da when we are changing her diaper. She loves to babble with Braska. They seem to have some inside jokes, and they get tickled by something and just sit there and giggle. Too cute.

Here we come, month 9. Ready for what's next. Maybe.