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?

Braska: 31 for 21: PT Days

One day every week I get to go see Miss A, or she comes to see me, and we do some fun stuff. We call these PT days.  If she comes to my house, we go up and down the stairs, but she doesn’t carry me. She lets me climb up by myself, and then I go down, too, but I still have to have a little help sometimes.  I’m getting better though!

Last week, we went to school to see Miss A.  First I had to get some comfy clothes on.  We work hard, you know, so I have to be able to move alot.


Then KiKi wanted to get in on the pictures.  She thinks she has to do everything I do!

I sat down to wait for a few minutes before it was time to go.  But KiKi wanted up in the chair too! 

This week Miss A had some little thing that she put on me called Ther-a-togs. They are supposed to help me stand up better or something. We always do the letters on the wall.  It’s one of my favorite things. I can say most all of the letters when she gives them to me.


That one is H.  I like H.

We also do the tricycle and we climb steps and do the slide, and sometimes we do the swing.  And my favorite thing??  It’s the Space Maze!!!  It’s the best for sure!!!  Here’s a picture of me from a few weeks ago in the top part of the Space Maze. (There’s 3 parts.) I can go all the way up by myself now and I love it!

Mommy report: Update, part 2-gross motor

Again, to review, Braska is 34 months old, she rolled over at 8 months, she sat independently at 13 months, and she crawled consistently at about 25 months. Over the last year she’s slowly conquered pulling to a stand, cruising, and taking steps with two hands help.

Braska has PT every week.  She loves her Miss “An-juh-wa” very much, and she performs better for her than almost any of her other therapists.  She has really taken off over the past few months since we’ve been having some sessions in the motor therapy room at Braska’s school.  She LOVES that room and is totally energized when she’s in there. They swing (a favorite always) and climb and do little obstacle courses while crawling.  She especially loves the space maze, which she has finally been able to master—all three levels—all by herself.  I often say that if we ever were to win millions, one of the first things I’d do would be to build one of those rooms on our house and fill it with all that cool therapy stuff.

She slowly worked her way through pulling to a stand with help, doing it on a flat surface (like a wall, nothing to grip) and cruising down the couch and then a flat surface, like down the hallway.  In the last month or so, she has started to try to stand up on her own, and she can sometimes do it for a second or two, but usually only once, then her little legs don’t cooperate after that.  She likes to be upright, though, and she spends alot of her days standing at the toy chest, the couch, Kinlee’s ExerSaucer, or at the front door looking out.

A couple weeks ago, her PT told me that Braska’s teacher at her pre-preschool said she had taken a step at school.  I was surprised.  We tried to set her up for repeating it at home, but she just lunges once she’s standing, not moving her feet. 

Then last Friday she took a step going from a chair to the couch, and again I was surprise.  Sunday we went to M’s family’s house for football watching, and Braska blew us all away by standing up from her little wooden chair in the middle of the room and taking 2 steps to the coffee table.  This was the first time she had done that unprompted.  Everyone got all excited and then she did it a few more times between people on the floor with her.  We debated if we get to count that as her “first steps,” knowing that it will be a long time still til she is officially walking, but I think we’re going to give it to her.

Her biggest issues are that she is just plain one of the lowest tone kids that some of our therapists have seen.  We have had this comment shared with us on several occasions.  She just has to work SO hard to move herself at all.  It doesn’t help, I’m sure, that she’s so darn small and light. She doesn’t have much muscle mass at all.  She struggles a great deal with her core strength especially, and even with her SureSteps, she has a hard time keeping aligned right and balancing on her own.

One thing she has down pat is crawling…finally.  She is a speed crawler at this point!  Don’t turn your back because she will be gone!!  She has also mastered climbing the stairs by herself, and pretty quickly, and she is just now getting the hang of going down the stairs the proper way.  We don’t let her do it unsupervised yet, but she’s making great progress there.  She loves to climb up on the couch or into the recliner.  Any climbing she can do is fun for her.

Overall, she’s working hard and gaining strength, but it is just a VERY slow process with her.  I’m guessing at this point that Kinlee will walk before Braska does, which will be weird, but it’s fine.  In the end, it doesn’t really matter.  And I can catch them easier if they’re crawling anyway!!

Stay tuned. Update, part 3—speech will be next.

Trading a sure thing for a question mark

I have mentioned before that our service coordinator with EI is the best. And she is. Or she was. Today was her last day with First Steps, and I’m not anywhere near happy about it. Sure, I wish her well, she’ll be a great asset at her new place and she’ll do a wonderful job. The kids will be blessed to have her.

But we’re less than 3 months from transition from EI to school. It’s a BIG transition. I’ve done my homework and I’m continuing to learn, but I was SO counting on her to make sure we got through it safely. The timing is just so plain sad.

And, though I’m trying to be open-minded, our new coordinator is new to the First Steps system, and that is enough to make me not feel confident. He’s probably very nice, he’s probably really smart, and he’s probably good with kids, but will he be full of experience and knowledge when I need it most? We’ll see… I’ll hope so. I’ve just come to find out today that some that were in her caseload are going to a much more experienced person. Since we’re transitioning in less than 90 days, it would have been nice to be in that crowd.

Thankfully, I’ve recently gained another ally in the process who I’ll be leaning on even more now. I’m going to be setting up a meeting with her next week to touch base and get on the same page. She’ll be involved with us for the next 3+ years at Braska’s school, so I’m looking forward to that.

It’s not the worst thing ever, it’s probably a really great thing for her, but still, I’m bummed that it will mean a less-than-smooth transition. It’s selfish, I know.

We’ll sure miss her, no doubt!

Braska: Working hard with Miss A

Sometimes I get to go to my school to do PT with Miss A. I really love those days! It's so much fun to play in the big room there. There's lots of climbing things, and I just love to climb. But I always start by banging on this part and getting all ready to go.

Then I like to swing. Sometimes the swing is like my swing at home, sometimes it's a big hard board that I sit or crawl on, but this time it was different. I didn't know what to do at first, but then it was kind of fun.


Miss A put me on the thing called a scooter. She and Mommy didn't think I'd be able to do it since my arms are not strong at all. But I did it! I had to work REALLY hard, but I did it.


Here's a super short movie of me showing off on the scooter.

Braska: Fun Workouts!

I got to go to my school a couple weeks ago an extra day to meet Miss A, my PT, and it was SO fun!! Usually she comes to my house, but it was special to get to go play with all the neat stuff at school. I got to use the same walker toy that I practice with when I go to school on Mondays. I surprised Mommy and Miss A because they didn't know I could walk this good with the walker toy!


We went to the place they call the "motor room" to do some exercises. I loved the swing!


There was a really fun place to crawl and climb, and I just LOVE to climb, so I did this part lots of times.












Miss A and Mommy were really excited about how hard I worked and how much fun I had. I hope we get to go back alot!!!

Electronic Alphabet, Number, and Color Flashcards

I've been working on a PowerPoint for Braska, kind of like electronic flashcards, since she LOVES the computer so much. It's the alphabet, numbers 1 through 10, and colors. She is really blowing me away. The *first* time I showed it to her she got F - J and O-T right in the alphabet. Like me showing her and not prompting her verbally. Unbelievable. Sesame Street WORKS! Ha! She also did 2 through 10 the same way. I almost fell out of my chair! I'm trying to get video of it for proof. We go over them at least 3 or 4 times a day, and she requests it by coming up and telling me "Numbers!" when she wants to do it again. She just continues to amaze me! Braska just loves it. We're working on her controlling the mouse touch pad. She does well, but she gets distracted and just wants to make the pictures go and not practice her letters and numbers, so for now, it's a joint effort, which is fine with me.

Click here to view the "Flashcards". Note that there is a full-screen option in the lower right corner of the viewer.

Please let me know if there are any problems.

Different States Early Intervention

Attention all parents involved in Early Intervention(EI): Help me out a minute, pretty please?

I've talked to a few of you lately about a variety of issues related to EI (AKA, Birth to 3, Babies Can't Wait, First Steps, etc.) and I'm finding that alot of the states are really different in how they handle things. I had no idea that there was such variety in the services and the processes.

So as a point of awareness for those who surf the web for this stuff, and just as a way to share with our fellow parents how things are where we respectively live (Maybe there will be something you didn't know about your own state!), can you take a minute a summarize a few points in a comment here? For the friends out there who have discussed this with me recently, can you still comment here so that we have the best grouping of info? Thanks!!!! If you've done a post on your blog on this, feel free to put the link in a comment too!

1. Some of you have mentioned looking for a preschool for your child who is about to turn 3. How does your city or district or region handle this? Do they assign a school based on your home location or do you have choices? For you that have kids in the 3-6 range, how often do they attend school and how have you felt about it?

We chose to live in the area of our city that we do in order to take part in our current situation. Some districts in our county have their own Early Childhood building that includes the preschoolers transitioning from First Steps. But we chose to be in the district that utilizes a special organization/facility that has 60/40 classes and in-house therapists. The whole place is designed for those with special needs but there are peer models there as well. (That's not the official description, but that's my simple summary.)This is where Braska goes to her pre-preschool currently, and she'll continue at that location, just going more often after she turns 3. We've been very pleased with our therapists from that organization that we've had already through First Steps and Braska really loves going to "school" on Monday mornings. So there's no "choice" for us to make, and I'm curious how that works elsewhere. It seems like several of you bloggers with kiddos this age are looking at preschools, and that's not part of our process, I'd like to know how it works.

2. Does your EI service provide equipment for you? Like walkers, specialized feeding things (Z-vibe, jigglers), or Sure Steps or orthotics? I've heard some even do things like swingsets!

Ours has a system (IL did too) that basically provides what is reasonable and needed when it is written up by the therapist and/or the service coordinator. I don't know the details, but I know it works. We got Braska's Sure Steps through this, and it covered it all. When we were in IL, they offered some of the feeding things, but I was too impatient for the paperwork and waiting for approval, so I just bought what we needed.

3. How does your EI work as far as payment from parents? Is it on a sliding scale based on income? Or is it a free service to everyone regardless of income?

In both MO and IL, it is a sliding scale. In MO, the fees are lower than in IL. I think the highest amount is $100/mo.

4. For those of you with 2-year-olds, have you had opportunities to attend training or information sessions about how to prepare for the transition to an IEP? What are you doing to get ready for this transition?

I've been blessed to know Adrienne, the leader of our local DS group and a friend I knew online before I moved here. I call her the IEP Queen. She is a wealth of information. She's involved with MPACT which gives training sessions for in-depth info on what to expect and how to be the best team member you can be for your child's IEP team. Here's a link to some great resources if you're interested. I'm trying to learn all I can so that I don't just plain accept what's told as fact but can make sure we get what we need and what's best for Braska.

5. And finally, how often do you have therapy and what services does your child get currently?

Braska gets weekly PT, speech is every other week, and OT is every other week and happens while she is at school on Mondays. She also has a nutritionist who visits twice a month and works on feeding and makes sure we're getting her enough food/fluids by mouth or via the G-tube.

Thanks, friends!! I really appreciate your time, and I think it will be very helpful. I am contacted often with some of these questions, so this will be a great resource!

Words, words, and more words

Braska has taken off with her speech in the last month. She's been mimicking, for the last few months, everything that's said, in person, on TV, in the store, etc. But now she's using the words, identifying what she wants, "labeling" as the ST calls it. We were all excited when she first looked at the TV when there was a cat food commercial and said, "Cat! Meow!" Then in the next 4 days there were another 6 words used, and we just kept looking at each other like, "Holy Cow?!?" We started keeping a list, so we wouldn't forget, and so we could reinforce them. It got to where we were adding new words, sometime 2 or 3, every day. I'm just plain blown away by this, let me tell you. She's cracking us up with the mimicking still, and we really have to watch what we say or what's on the TV, since she doesn't so much have an "appropriate" filter. She just says it if she hears it.

She's come a long way, also, in completing her words clearly. Nose is now nose, not just "no." Sheep has the SH and a clear P on the end. Bottle is plainly two syllables with the appropriate sounds in both. We're to the stage that when she will allow those outside our house to hear her, they can actually understand her. That's pretty fun, I must say.

Her teacher at school has said that she's just talking up a storm at school the last few weeks. She was all shy the first few, so I'm pleased that she's getting comfortable enough to chat with them. Some uses are more inconsistent than others, but all of these on the list have been shown properly more than a few times. Here's what she's got so far... unfortunately, we've not been successful getting much good video yet, as she's not so cooperative at performing, but she uses them as she needs them.

• Cat: Especially when she sees them on TV or a movie. And she yells this one!
• Drum: She requests her water drums when she gets in the bath, and she has an ice cream tub that she uses for a drum as well.
• Bubbles: This has recently been a request from the PT, as Braska found them in her bag and wanted some bubble action. She also identifies them when asked.
• Nose, Ear, Hair: She prefers to identify these on bodies not her own.
• Picture: This is what she calls the camera. She says it when she grabs the camera if it's been left within reach and when she looks up to see it pointed at her.
• Movie: This is said, generally with animation, as soon as she gets in her carseat in my car. There's a DVD screen that she uses on longer trips. She seems to think they are all long enough.
• Bottle: Every time Kinlee gets a bottle (when we're away from home for a feeding), Braska has to get in on the action, come grab the end of the bottle and identify what she has found. She has a tendency to want to take it out of Kinlee's mouth, but we're working on that part. One step at a time!
• Car: One of her puzzles has a car piece, so it gets identified when she plays with it. She will answer, "What is this?" for that piece too. And sometimes when she's looking outside at the front door she'll say car when one goes by. Oh, and of course, when we go to the garage to leave, she lets me know where we're supposed to go.
• Puppy: She doesn't seem to like the word "dog" so it's always "puppy" instead.
• Sweet: This is her word for a hug lately. She'll lean in and cuddle for a second and say "Ohhhhh, sweet." I think we must have said this and not realized it. She also does this to Kinlee in the morning when she comes to say hi.
• Nice: When she pets Kinlee's head, she says, "Niiiiiiice." We have told her repeatedly to "be nice" so I guess that's where she got it.
• Bless you: When someone sneezes, including herself, she greets with this. So funny to hear.
• Wash: This is used whenever she's done with eating, or if I wipe her hands when getting into/out of the shopping cart or something.
• Bouncy: She loves this one, and it's all for Daddy. They have a knee-bouncing good time in the evening, and she hardly lets him sit down after work before she starts insisting, over and over and over... "Bouncy!!!"
• Poop: This one shocked me, but when I get her out of bed in the morning, if she has messed her diaper, *most* of the time she will tell me "Poop." It's not 100%, but it's been pretty consistent.
• Bib, Tray: When it goes on before eating, and when it comes off...she labels them each both times.
• Door: Any door, she goes to it, knocks, and says, "Door."
• TV: This is what she says sometimes when she gets in the car, instead of "movie," and she hands me the remote in the morning after breakfast and says, "TV!" (sometimes TB) as she knows it is time for Sesame Street.
• Makeup: This is what we call her Aquaphor that we use on her face (also arms and legs, but then it's "lotion" which, I know...it's confusing). Anytime she sees the container come out, she yells "makeup!" and occasionally it sounds like "nakeup" for some reason.
• Bath: If we forget to close the bathroom door, she stands at the side of the tub, knocks on it, and says, "Bath" over and over until someone removes her or complies with her request.
• Diaper: Everytime we change her, we ask, and she answers. And if she gets into the diaper bag and empties it, she labels each one as well.
• Brush: A comb or brush gets called a brush. And she will take it and attempt to comb/brush whatever hair is near. She usually tries to do her own RIGHT after I've done pigtails or something nice and neat.
• Shoes/socks: These are favorites of hers. She taps on them and labels them as we put them on her or if they are left on the floor. And if we put them both in front of her and ask her to give us one or the other, she will get it right. I love that!
• Hat: This one almost always is both a sign and spoken at the same time. And it usually comes up when Daddy shows up with one on.
• Pat pat: This one is for Kinlee. She will lay her hand on K's belly and then lift just her fingers and pat, telling us what she's doing. I think it's quite interesting that she doesn't lift her whole hand.
• Glasses: She occasionally will just touch her glasses and label them. Or when she's around Grandma or others with glasses, she'll label them and grab, but she's better about not taking them off of the person. She also says "glasses on" when we put hers on in the morning.
• Mommy: She has taken to patting me on the arm and saying it, just the last few days. She doesn't use it to request my presence yet, like from her crib or anything.

A few other fun things that we do every day are her ABCs, when I say each and she repeats them all. She's now able to give the following letter on about 6 of them. We also work on numbers 1-10 (10 is her fave), and she will do 2 and 3 when given 1 to start with. And she now has a few animals that she knows sounds for: Cow, Sheep, Cat, Bear, and Horse. She can say the word and then answer, "What's a ____ say?" with the right sound. Bear is our favorite, because she says "raaooor" with a very bored and un-scary tone....a very mild bear, for sure.

We are very pleased that she's doing so well. As most of you know, every kid is different, including kids with DS. Every kids has strengths and areas that they struggle with more. Braska's strength is her speech/communication, whereas gross motor (walking, standing) is her area of great struggle. No matter how that changes or evolves, we'll still celebrate all the accomplishments and continue to work on areas that need more help.

I hope to have video to share of some of this soon!

Braska: Funny words and more walking

Miss J came on Tuesday to see me. We worked on talking about things and asking for things. She brought bubbles again, and I really like bubbles! She asks me what I want, and I like to just tell her the last thing she says. She wants me to pick things, but I just like to say everything that she does! She says we'll keep working on it. But the bubbles! So much fun!



Mommy and Daddy think I'm funny because I've been saying, "Oh yeah!" about alot of things. Here's a little short movie to show you, and it also shows a couple other of my favorite things... cow and horse sounds!

Yesterday, my PT came to see me. We practiced my walking again, and I'm having alot of fun doing it! So last night Mommy and I showed Daddy how good I'm getting. I just wanted to do it over and over. I really like my walker!

(You might want to turn your sound down a little...Mommy gets kind of excited and goofy!)

Pretty soon I'm gonna be going all by myself!

Braska: Fun day at school!

Mommy told you that she took me to school yesterday. But I wanted to show you a few more things. It was so fun!! I wish I could take pictures of my class, but they don't like us to do that. That's sad, I think, but it's ok.

My teacher is Miss A, and she is really nice. We played with music and sang songs in the circle. I even had my own chair! I sat next to my new friend Z. She's a little bit older, but she's still 2. We went to the romper room, that's great big room where they have great big toys and lots of room to run and climb and play. Miss A told Mommy all about how I tried to get up on the big stuff, and how the teachers helped me walk on the balance beam since I was trying to do it.

We made pictures, and I brought mine home to show Belle. Miss A helped, but I did some of it too.

I told Mommy all about school on the way home. I just kept talking and laughing all the way in the car, but I don't think she always knew what I was saying. I was just so excited! I wanna go back again, but Mommy says I only get to go one time each week for now. When I turn 3, I'll get to go more. I can't wait!

I had my milk for lunch and then I was tired quick. School is fun but it wore me out!

Pre-preschool dropoff:Day 1

Today Braska went to "school" for the first time. It's called Kiddin' Around and it's all 2-year-olds with varying developmental delays or need for early intervention. I call it pre-preschool since it's getting ready for the next level that she starts when she turns 3. I dropped her off about an hour ago. She seemed excited, and she didn't seem to be the least bit worried about where I was or was going, so I stayed for a few minutes while the other kids arrived and then left. Seemed a little weird, but I'm sure she'll love it. It's one morning a week for 2 hours, so that's not bad.

This was my attempt at a picture of her first school day outfit. Forgot to turn off Sesame Street though. Check out that snazzy shirt, Amy/Jen! :o)

(Just for an interesting perspective on this kid's weird sizing issues... She's 25 months old. That's a 9 month shirt, 24 month "skinny" jeans with the adjustable waist cinched to the max, and size 3 shoes that are still PLENTY big. Oh, and underneath is a 9 month onesie. She could wear 9-12 month jeans since they fit around her waist but they're too short. These are a little long still, but better than short in the winter. Eventually she'll even out...maybe.)

When she got to her room, we were the first ones there. She liked the little chairs and one of the aides brought her a toy. Anything that she can make noise with is a winner. She kept hitting the orange key...that's my color coordinated girl!

I'll go get her in another hour. I'm sure she'll be happy to tell you all about it soon. We missed Jack, since he didn't get to go today. She'll love it even more when he's there too, I'm sure.

Great gifts for therapists, Angel Tree 2008

I just went and made my second round of "gift buying" at Reece's Rainbow. We did this last year and are doing it again. The response from our team last year was amazing.

Alot of us buy for Sunday School teachers, school teachers, therapists, daycare providers, etc. It's can be a chore to find the right thing, and if we admit it, most often what we give is either edible (not that it's bad!) or it's a dust collector. The thought is nice, but who really benefits? So we started last year with donating to Reece's Rainbow in honor of our therapists and service coordinator. They were so touched, and a couple of them actually ended up paying it forward and using the idea for some of their gifting as well. I heard from more than one of them that they get so many nice things, but they really don't *need* any of it, so this was a way to be appreciated but have it help someone who really DOES need it. I just gave them Christmas cards with a note inside that we'd made a donation in their honor and stating our appreciation for their work. So simple, but so very well received.

Please check out the adorable faces of kids who are still looking for homes. (Click on the picture below) You can even get an ornament with the child's picture that you've donated toward if you do it today (the 15th).



I give to RR frequently and significantly. I don't say that for any pat on the back, it's not about that. It's about putting our money on what's important. It's about stopping just the talking about how we are all supposed to help others and put those with needs first and actually DOING it.

I hear people talking about if you have "extra" to give to RR or other great causes. I appreciate any plug to help others. But I don't know anyone who thinks they have "extra" money. I know that I don't. We're literally cutting back on everything from what brand of milk we buy, to eliminating some of our "fun stuff" that we don't really need, to keeping our house less toasty warm in order to simply make ends meet each month. We're not doing Christmas gifting with family, (which is more than fine with me since I feel like Christmas gifts should be for kids anyway...all us adult siblings can buy whatever we might want so gifting becomes a hassle and stress to try to find something they haven't already bought for themselves, but I digress) and I don't miss it because to me Christmas is not about the gifts at all. It's about yummy meals and pretty lights and having fun and mostly about celebrating Christ's birth and the true gift that is to all of us.

Regardless of what the bottom line in the checkbook says, I make room for giving. We've never gone without. I don't expect we will. God always blesses us, not necessarily monetarily, of course, but in whatever way, it's more than worth it. It means I don't get the Chinese food every time I want. It means I only have one pair of maternity jeans. It means we eat alot of the same cheap food at home. And I don't mind one bit. These kids don't have any of that, and if they don't find homes, they may not even have their lives. Institutions are no fun, and that may be their future. It is just that simple to me.

So you may not have extra. You may have already done your shopping. But do you have something that could make a difference to a child's entire life, not just their playtime habits for the next few days? Will Braska wish we'd have given her some toy this year or will she benefit more from knowing that her parents value people and especially children who need to be spoken up for?

IFSP meeting 12/08/08

It's that time again... time to look at what we've accomplished and where we're headed. Or I should say what BRASKA'S accomplished, since I'm not working all that hard, but she IS.

Let me back up for the sake of those who are newer to this fun of acronyms. IFSP is the individualized family service plan that is initially done with a kid enters the EI (Early Intervention) system, normally soon after birth for kids with special needs. Every 6 months, or when a change needs to be made sooner (OR when you change states), it is reviewed and updated. This goes on from birth to the 3rd birthday. In our experience, it has included the service coordinator--who keeps everything in line and organized regarding all our services/therapies needed, the various therapists and service providers, and the parent(s). We basically walk through the various therapy categories relating to the goals that we set 6 months ago, discussing how she has done, what goals she's met, what she needs to work on now, and then specifying what goals to set for this next period.

We moved to Missouri right after Braska was 18 months, so it works out nicely now that her meetings fall close to her birthday and half-birthday. I like things nice and neat like that.

So Monday afternoon was the big day. I don't really fear these meetings like some seem to, but it's not like it's fun either. I like our team, so it's not their fault. It's just sometimes hard to sit down and plot out what you want your kid to accomplish in the next 6 months. And I knew that some goals would not change from the last 6 months, in our case. Thanks to Little Miss Refuse-to-Eat. In attendance were Miss C (best service coordinator ever!), the OT, PT, and ST(By the way, that's occupational, physical, and speech therapy...all the letters...), and the nutritionist. Oh yeah, and I was there too. Of course, they always sit on the floor! Come on, people, why do I have sofas and why did I clear them of laundry and toys?!? Silly girls. They humored me and sat on the sofas. Aren't they nice?

Overall, it went well. I was pleased that everyone seemed to largely be on the same page as far as what we're looking at for the next few months, and they were very cool about the changes I wanted to make. I won't go into great detail. If you're interested in the goals, I can add more on them when I get the official copy of the updated IFSP in a few weeks. But I'll just give you an idea of what we're aiming for and what we changed or tweaked.

Kiddin' Around-- This is a new thing for us. We actually went on Monday morning and observed; well, actually we got to sit in for a bit of class. It's what I call pre-preschool, for kids that are 2 and receive some kind of EI services (if I understand it right), but there are a variety of issues. There were 5 kids there, though the teacher told me they would be getting 4 or 5 more in January when Braska starts. Her buddy, Jack, is one of those...and we're very excited that they're "starting school" together. One of the little girls in the class now has DS, and she's adorable, of course. Quite a live wire too. So there will be at least 3 of 10, and that seems cool to me. Side note: Since we live only blocks from Jack and he's just less than a month older than Braska, I'm hoping that they can go through school together. That would be so cool for a kid of mine, since I never went to the same school for more than 3 years. Anyway, KA is a weekly class, I think for a couple hours, and the teacher, Miss A, seems very nice. Since we'll be adding this weekly, and due to Kinlee's impending arrival, we decided to make some other adjustments to the schedule. Braska will start KA at the beginning of January, and from what we saw for the short while we were there on Monday, I think she's going to like it. She liked sitting in the circle in her chair and singing songs. She picked up on the Hooray! parts like a pro. And the romper room....it's like toddler heaven in the form of a colorful, cool playroom! I feel good about it fitting well into what we're working on with her now, and I like Miss A's approach to the few things we chatted about.

PT--This has been weekly, and we're keeping it that way. Braska has very low muscle tone, even for a kid with DS, so she has to work VERY hard at gross motor skills like crawling, standing, and taking steps. This is probably her most difficult element. She's just getting to where she will cruise a little at the couch, more at the bathtub. She loves to take steps when she's holding our hands, but she's not strong enough to hold it together to stand or step on her own. She'll get there, but we'll keep working hard in the meantime. She tries hard...it just takes so much more effort than it seems like it should for her. Braska likes her PT very much, so that helps alot.

ST--This has been weekly for about the last year or so. As many of you know, this is Braska's strength, in my opinion, and I think the pros would agree. She understands instructions and minds them, for the most part, and she is loving adding more verbal communication every day. Since we know that right now she is very self-motivated, we are going to back off to every other week. This will help me in easing the schedule, and we do not feel it will harm her at all at this point. We'll continue all the work we do at home on these things, which is quite a bit of reading, singing, and practicing words, sounds, and letters. And the ST sessions will focus on labeling (like pointing at a picture of milk when asked which is the milk) and working on two-word combinations. Miss J has some good ideas of what to do for our next steps, so I think Braska will continue to do well, even with the change in schedule.

OT--This has been weekly, and it has varied alot. Our OT in C-U was also kind of our PT for the first year of Braska's life and helped her through sitting, and transitioning to sitting, and working on crawling. Once we came here, our first OT was all about feeding, which was what our goals were for that area. When we changed to our current OT, the approach changed, and it has been more about interacting with food but not so much eating. Braska's never had much focus on fine motor in the "classic" sense, and she's not making any great strides in feeding, so I decided that I wanted to let go of the food element for now and go with more of the fine motor in a play-based environment. Her issues with feeding are less about sensory problems with food and more behavioral. Plainly, she's stubborn!! Well, that might only be 95% of it, but still. The cool thing with scheduling OT is that our OT is based in the same facility location as KA, so she is going to see her for sessions there during KA every other week. I think that's wonderful, and I think Braska will probably respond favorably to that change. It will ease up our schedule too. Big thanks to the OT for doing that!

Nutrition--We've been seeing the nutritionist every other week for a few months, and she works on introducing foods and feeding. Braska cooperates pretty well considering her history, but it's slow going for sure. We're going to keep it the same for now and continue this part of her feeding work. Honestly, we are just not worried about this. She will get it. It may take watching kids at school and her little sister eat and enjoy yummy food to get her to take an interest. And that's fine. We're definitely at a no-stress point with the feeding thing. It's exhausting to make it a big deal. It will come. I've no doubt. In the meantime, it takes all of 5 minutes to feed her and there's no mess. What's to complain about?!?

So there you have it....that's the important part of the meeting. It was interesting to look back over the IFSP from June and see how type A I was, and then to note how nonchalant I am about this stuff now. Life changes, priorities change, and the kid's needs change. We're alot more laid back now, and I like it. Miss C did make mention of the transition meeting in the spring. What?? Do we have to talk about that already?? Actually, I tease her, but I'm not so worried about it. I've got faith in this bunch to get us where we need to go, and I like that we have a few options about frequency for when she starts preschool next fall after the transition on her 3rd birthday. We'll deal with that later... For now, I feel good about the goals we came up with, the plan for the next few months, and Braska's progress.

Oh yeah, and I did let them know that we'd probably be off a few weeks in February when we're trying to figure out how to have 2 girls to deal with. I've gained a bit of wisdom since planning only a few days off when I had Braska! Ha...little did I know...

If you have questions about any of this, feel free to ask!

IFSP fun

I just put up some info on our IFSP meeting from Monday on Braska's blog. It went well. I feel like we're in a good spot.

And let me say, that's no small thing. It's nice to feel like some aspect of life is in good shape and under control. It's not like my life is bad, no way. Just that it's good to be able to check one more thing off. Braska's in good hands, and we have a good plan. I'm thankful for our team, and I appreciate how much they like my girl!

You moms or parents who have the privilege of doing these IFSP/IEP meetings...do you like them, dread them, go with the flow, or have a planned agenda of things to accomplish and change at each one? Apparently, some parents never have much input, just going with whatever the team says. It's good to trust your team, but I'm surprised that the parents wouldn't have things to say in regards to what they want for their child that the therapists may not be privy to.

Just curious...

Middle of a long day

It's 3:45p, we've been home about 35 minutes. My feet hurt and I'm sore in unfortunate and inconvenient places. BUT the garage sale went pretty well, as they go.

Oh yeah, before I forget ... 11 years ago today, my husband (then someone I'd never met and only had talked to online for 6 days) drove over 28 hours from Montana to Missouri because he "just had" to meet me... time flies. Here's the rest of the story if you missed it last year.

We ended up with a TON of stuff... big stuff, little stuff, junk, real finds, and alot of it sold. Overall, the sale brought in close to $2000 total, most of that going to the brother-in-law who had the furniture and bigger ticket items, but the parents-in-law did awful darn good with their ridiculous tons of DVDs that were a big hit. Me and M did ok, as things go. I think we came home with just shy of $100, plus a car seat for Braska to use for the next 2 years (at least) in Daddy's car as a back-up and the toy that she has been loving that we've borrowed from the PT. I walked up the driveway this morning at 6:30am and couldn't believe it was sitting there. So I snagged it up quickly. Both of these were Trevor's, a friend from the in-laws' church. She and one of her friends had a sale last week, and I got a crazy good bargain on a double stroller. (I've been in denial about needing one... but I dealt with it, and now we have one.)

We had alot of traffic through there, especially for a sale this late in the year. I think it was a success. And not as unpleasant as I thought it might be. It makes a HUGE difference when most of what is there is GOOD stuff, and not just the junk we don't want. Whoda thunk it??

Now I'm trying to rest my feet for a moment, but soon it's shower time for the second time today as we get ready to head to dinner with a couple we've never met. Should be fun. M met him online at a tech-guy kind of web forum... they decided to let the wives come along too. Then, it will be BEDTIME!!! Can't wait...

Off to a great start

Braska was up at 3am in the oh-so-frustrating way she does on rare occasions, sitting up and crying in her crib. After a few tries of rocking til she was asleep and then putting her back in bed, only for her to pop up right away saying "up! up!", she went back to bed with me. As I've mentioned before, I'm not at ALL a fan of kids sleeping in the parents' bed. But when the two options are for me to sit and rock her while she sleeps or to lie down and at least rest while she sleeps, I go for the horizontal position.

She wasn't snoring, so that was an improvement over the congestion issues of a few weeks ago, but I still can't sleep at all when she's right there. I hear every sound, feel every quiver or kick, and it means no sleep for as long as she's there. I managed to get comfortable for a while, but it was short lived as I was on about 10 inches at the edge of our lovely king-sized bed. In my state of aches and pains, with Pepino constantly telling me that she is not happy with my position, this was not a most pleasant few hours, to say the least. But we made it until about 7:20am when M got up for work. Of course, Miss Slept Well While Mommy Didn't was happy, giggling, and ready to play, while I was a tad on the grouchy side.

We got up about 7:45am when her pleas to "get up" were finally heeded, and we started the day. Now it's 9:30 am, and I've changed her twice for massive puking episodes (we call them full-feed, because it's soon after her feeding and it sure looks like the whole 6 oz.), once for excessive diaper mess, and changed me once for her wetting on me while I was trying to whisk her to the tub. There are 6 wet spots on the carpet from puke/spit-up and the carpet cleaner that was added to try to help. We have two therapies scheduled today, ST this morning, and PT this afternoon. Napping is tricky on Thursdays with that schedule, so I've cancelled them for today due to her iffy situation and my lack of sleep and impatience with generally everything.

I'm sure it's just a fluke. She's not really acting sick. I think she might be working on another tooth or two. Whatever it is, it's not the way I like to start a day.

To end on a good note....it's so nice and cool outside, that's nice.

Darn, she just melted into a crying puddle again. For a girl who doesn't cry more than a couple times a month, normally, this is disturbing..... Happy Thursday.

End of the therapy saga

Braska's OT and PT have resigned from her team. I think this is really unfortunate, but after hearing from some insiders that I didn't even know I had in my resource pocket (you guys are so sneaky!), it's really for the best all around. They are good therapists and they'll continue to be, but I'm sure we'll find some wonderful new team members.

We've decided to take a break for the month of August since we'll be so busy. We'd actually already debated this, prior to this situation, just due to the chaos of moving and such, so it's fine with me. We'll contine with ST in the meantime. Jocelyn is just a peach of a girl, and Braska actually talked for her a little today!

Thank you to those who had helpful tips and especially to you therapists from near and far who offered a great, supportive perspective. What a great email response!!! I'm glad to know this is an isolated situation. Don't worry... we'll keep showing off our girl's progress and how she gets there!

Hey DS Parents, Therapy session question

Do you guys take pictures of your therapy sessions? Videos? And if so, do any of you post them on your blogs or websites? Do any of your therapy providers have policies regarding that specifically?

I had a situation about this today, which I can't really post about here. I'd like some input. If you're game to help me out, leave me a comment and I'll send you the whole story. For those of you on DownSyn, it's on there too.

Thanks, Team!

Constant battle

Medical insurance issues and authorizations are my thing. It's what I do. It's been at least part of my job for more than 10 years now. I get journals and magazines and do seminars and continuing education in the field.

Even with, and maybe due to, this expertise, I get SO frustrated at how wrong some of the practices we deal with in Braska's care can get what should be a simple process. How in the world do parents do it that don't know how the system works?!? When they get an EOB (the explanation of benefits from the insurance that tells you what they pay and what they won't for a particular visit or service), and it says something is denied, do they just pay it and suffer the economic setback or do they know that there are any of 15 things that could be wrong causing that denial to be incorrect?

I've spent the morning calling our case manager at the insurance--who is little help, unlike the previous ones we've had--getting no pertinent info other than what I was telling HER. I had to tell HER how it should work and what her next step should be. Then I called the therapy location to inform THEM how to bill properly so that they will get paid. Now, mind you, I've done this at LEAST 2 times before for both these entities. I always try to be very nice when I deal with people on the phone that I know I'll be encountering again, so as not to start a bad rapport with them. But this time it was business to the point. Here's why it's denied. Here's what you did wrong. Here's how to fix it. Here's who to contact. Here's what to do next. And then I require them to call me when it's done correctly so I can follow up and make sure.

Sure, I've been a boss in this position for years, and it's not hard for me to take the demanding position, but when it's been in and out their ears with no good result, it's time to make things clear. I can recite diagnosis codes by the hundreds and I can pretty much tell you what things will be covered and what won't for several major insurances. I'm thankful I have this background in our situation, but so many of you don't! How in the world do you do it?!? I'd lose my mind... I'm close already!

Ok, I don't really vent often, but I'm just so tired of doing the work of all these other people who I'm paying to do their job! I'm very thankful for insurance, and I know the system CAN work when people will just pay attention and learn what they need to know. I can't train everyone myself! :o)