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We are a group of friends who have come together because we share the common bond of caring for someone who has Trisomy 21. We are here to share therapy tips, medical issues, laughs, accomplishments and yes, even frustrations. We embrace what Trisomy 21 has brought into our lives. We feel that it has taught us to appreciate the true meaning of life. We count our children as blessings! We will fiercely protect them and fight for their lives to be valued just as all other peoples' are. We share our pictures, our stories and our hearts here not only to provide friendship and support for each other, but also in the hopes that others will open their minds and their hearts to our unique children and, in turn, make a better world for everyone.
 


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IFSP

March 16 2005 at 6:35 AM

Kei  (Login Kei_as_in_K)

 
Here's William's old IFSP's. When I found them, I realized how simplistic they were compared to his IEPs. There wasn't much to scan and save as a file, since most of it was handwritten. So I'll share it here so it can be used as a reference.
His very first IFSP was when he was almost 3 months old~ the handwritten part was so difficult to read that I can only include one of the items out of 3:
Outcome: We would like to increase his neck control and strength of muscles
Strategies: Variety of positions (tummy, side, back). Include positions to encourage being 'tucked in'~ hands to midline, feet up.

Service Delivery Plan:
Assessment, up to 10 hrs/yr, provided by Reach Team (our EI team)
Developmental, 1.25ht/4xmonth, provided by Developmental Educator
OT/PT, 1.25hr/1xmonth, provided by OT/PT

We did not have ST at that time, although she did consult and the others did encompass those needs within their therapies.

At the 6 month review we added:
Increase communication with words or signs.
Goal~ William will crawl
Increase OT/PT to 1x every 3 weeks, 1.25hrs
Continue Developmental Ed, weekly, 1.25 hrs

His One year IFSP~ he was 14 months at this time:
Desired Family Outcomes and Strategies:
Outcome 1: Support William's development in all areas~ help him with fine and gross motor skills so that he is at age level.
Strategies: Offering opportunities to refine his grasp (esp. during feeding so that we can use small objects); use smaller containers for reaching into.

Outcome 2: William will say more words- increase vocabulary (both words and signs). Independent in following directions.
Strategies: Stimulate oral motor skills (whistles, bubbles). Label everything (This is a fork. Here is your doll, etc)~ books, pictures, objects, actions that are relevant to his life.

Outcome 3: Support family with ideas to challenge William's development in all areas
Strategies: Provide articles, information on play, toys, activities.

Service Delivery Plan:
home visit. 1x week, 1.25 hr Developmental Educator
home visit. 1x week, 1.25 hr OT (who also did PT)
home visit. 1xmonth, 1.25 hr ST

Recommendattions by the SLP at the DS Clinic in Boston when he was 16 months:
1. Continue with William's current speech/language intervention plan. Upon turning 18 months of age, it is recommended that William's speech/language services be increased to bi-weekly visits. Therapy should continue to focus on the development of functional communication skills, while also directly addressing phonological skill development and continued introduction of manual sign language.
2. William should continue to be exposed to and encouraged to use a variety of referential manual signs representing desired items and activies. Manual sign language is an excellent means of increasing receptive vocabulary skills as well as augmenting expressive communication.
3.William's language should continue to be stimulated during daily interactions. Continue to speak about objects and activities that William is focused on and interested in. Speak slowly with pauses and emphasize content words. Use self talk (i.e., talk about what you're doing) and parallel talk (i.e., talk about what William is doing) to describe your own and William's actions respectively. Maintain William's attention by varying the intensity and pitch of your verbalizations. Continue to label objects and people in William's envrionment, sing songs, and engage him in social routines as these activities provide continued opportunities for development of communication skills.

6 month review~ Continue working on goals. Specifically work on developing William's pincer grasp, increase attention/focus, follow simple directions.
Decrease OT/PT to 1.25hr/2xmonth
SLP 1.25hr/2xmonth, increased to 1.25hr/4xmonth shortly after review
Devel. Ed 1.25hr/4xmonth

2 yr IFSP done at 26 months:
Desired Outcomes and Strategies:
Outcome 1: William will continue to communicate in words and signs
Strategies: Sign/movement songs
Increase word combinations, vocabulary
Expand and refine articulations
expand feeding and oral motor skills

Outcome 2: William will safely explore and manuever around his environment
Strategies: Stair climbing
Wheelbarrow walking
Jumping

Outcome 3: William will transition from early intervention services to public school program at age 3
Strategies: Home visit with early childhood coordinator
Visit preschool classroom
Encourage sign in preschool
Advocate/IEP prep workshops/meetings

You may notice that nowhere on these outcomes/goals are age levels. The only time the team ever discussed age levels was when they did the assessments. For strategies/exercises, they relied quite often on the Woodbine DS series~ Gross Motor Skills (especially the motor milestone checklist), Fine Motor Skills, and Communication skills.

Hope this is helpful. Any other questions, or anything I can help out with, my email is keimalone@verizon.net






Kei and William, 4

"I am a little pencil in the hand of a writing God who is sending a love letter to the world." ~Mother Teresa

Check out Robert's cartoons! http://www.oddzervations.com







 
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AuthorReply


(Login EmilyElizabeth)

Here is what I wrote for Emma Jayne's last IFSP review...

March 16 2005, 7:08 AM 

which was done when she was 7 months old. I also wanted to thank Kei, Banah, and Michelle for posting/ sending their IFSP/ IEPs. I will post our new one and what I come up with prior to EJ's Friday review as well.

_______________________________________

Emma Jayne – Early Intervention


What Emma Can Do Now
1. Hold her head up on a straight spine with support
2. Roll from back to tummy
3. Beginning to push off with both arms and feet
4. Laugh
5. Blow raspberries
6. Making vowel and consonant sounds
7. Babbling
8. Hold her bottle and drink from
it for short periods of time
9. Hold her sippy cup for short periods but cannot hold it high enough to drink from it
10. Sit with support
11. Take weight on her feet for very brief periods


Goals
1. Push off with arms/ build strength & endurance - 8 months
2. Self feed from bottle/ hold bottle for entire duration of feeding - 8 months
3. Render a pellet
4. Pincer grasp
5. Pick up a pellet
6. Respond to her name consistently
7. Drink successfully from her sippy cup - 8 months
8. Sit up unassisted with a straight spine - 8-10 months
9. Begin drinking from the honey bear with a straw - 8 months
10. Begin straw Therapy to build oral motor skills - 10 months
11. Crawling 10-12 months
12. Feed herself finger foods
13. Stand unassisted - 13 mos
14. Object recognition
15. Begin using at least one word 15 months
16. Begin horn therapy 15 mos
17. Walking unassisted - 18 months

* I realize that Emma may not be able to achieve some or any of these goals in the time frame I have allotted, but I would still like us to strive for these time frames and let her show us what she can accomplish and when she can once we have provided her with the resources to achieve them*


To Work On Now
1. Relearn rolling from tummy to back (skill set has regressed)
2. Object permanence
3. Cause and effect
4. Sensory activities
5. Blowing bubbles & other activities to build oral motor skills & muscles
6. Sitting up
7. Respond to her name consistently
8. Pushing off – both feet and arms

Tools to Utilize
1. Flash cards
2. Wedge (sitting)
3. Boppy Pillow (sitting)
4. Straws for straw therapy – Lip Closure
5. Horns for Horn Therapy – building oral muscles for speech
6. Bubbles – blowing to build Oral Motor skills
7. Ball for balance and building strength in arms for pushing off
8. Honey Bear & Straw – straw therapy/ Lip Closure
9. Sippy Cup – Lip Closure
10. Music Therapy
11. Massage for muscle stimulation
12. Exersaucer to get Emma used to having weight on feet & pivoting
13. Jumperoo? Building leg muscles for pushing off

Observe Today
1. Emma’s position in highchair
2. Emma’s oral muscles and tongue protrusion when eating from a spoon
3. Emma’s position in an exersaucer
4. Emma on the ball
5. Tummy Time
6. Emma sitting with support
7. Emma drinking from a bottle


Questions
1. What should we use to help her self feed? Looking for finger food suggestions that are not a choking hazard. Also looking for time frame guidance. We do have teething biscuits, but the box says children should already be crawling to safely consume biscuits.

2. Does the exersaucer encourage hip turnout? If so, is there a way to use the exersaucer to encourage proper positioning?

3. Should we purchase a jumperoo? Are these as good as I’ve heard for helping to build leg muscles and help get babies used to weight bearing on their feet?

4. What can we safely use as a pellet to practice rendering & pincer grasp without causing a choking hazard?

5. Is there a wedge available or should we purchase on?

6. Does the OT or PT have experience with Sara Rosenfield-Johnson’s Oral Motor Therapy techniques?

7. Emma insists on sleeping on her tummy now…is this safe? There is not a lot we can do to discourage this.

8. Does Emma have access to a Gymboree or anything that can act as a Gymboree?

9. Will Emma have access to any music therapy?

10. Will Emma have access to Speech therapy by 12 months?

11. What does the OT think about using the sippy cup? I know it is controversial in therapy circles, but it was recommended to me by a Sara Rosenfield-Johnson OT for initial lip closure so that she may begin straw therapy. It was not recommended s a way to actually drink fluids – just preparation for straw therapy.
_______________________________________

I hope this has been useful...






Emily
Mother to Miss Emma Jayne
Lilypie Baby Days
http://www.babiesonline.com/babies/e/emmajayne/

 
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Michelle
(Login mdbeau)

I think this is great Emily!

March 16 2005, 9:44 AM 

I like how you started w/all the things EJ CAN do! That's a wonderful way to look at it first! I think you have great goals down and there is nothing wrong w/putting the time frames. I remember looking at some of Kayla's goals thinking "it'll be forever before she does that!" but then I have to remind myself these goals are for ONE YEAR and there is a lot a little one can learn in one year

I know the questions you had at the bottom were for your EI team, but I thought I would comment on a couple of them; not that I'm an expert or anything! Just my experience so far.

1. What should we use to help her self feed? Looking for finger food suggestions that are not a choking hazard. Also looking for time frame guidance. We do have teething biscuits, but the box says children should already be crawling to safely consume biscuits.
I believe we gave Kayla those teething biscuits before she crawled. I remember reading that on the box so I didn't buy them the first couple of times, but then I did. Cause she won't be crawling around while eating them LOL I think as long as there is good head/neck control and she is sitting up well in her high chair she should be ok with them. Is she eating anything like cheerios yet for self feeding? When I first started Kayla on cheerios I actually broke them up into 3rds! Just for my piece of mind Then I went to half and finally a whole cheerio - that was from our ST recommendation. Have you tried the Gerber Fruit/Veggie Puffs? They pretty much disolve in the mouth. I don't know where EJ is on her eating, but if you buy a can or frozen bag of the mixed veggies w/the really small carrot squares etc...and steam them until they are soft - you can put a carrot square on her tray and they are small enough and soft enough to chew up.


4. What can we safely use as a pellet to practice rendering & pincer grasp without causing a choking hazard?
I remember asking this question to our OT because Kayla mouthed everything! She still does a lot, but at least it isn't the first thing she does with an object now! Some of the stuff I typed above is good for starting to use the pincer grasp - like those little carrots and, cheerios, fruit/veggie puffs. Our OT had these small things that she put inside a small bottle. Kayla would have to put these pellet things in the bottle, but we were always right next to her and as soon as her arm would go up towards her face we would redirect it back down and point to the bottle and tell her to put it in.

7. Emma insists on sleeping on her tummy now…is this safe? There is not a lot we can do to discourage this.
I had always heard once the baby turns themself over to sleep on their tummy they are ok and there really is nothing you can do about it. She's a year now so it should be ok. Just continue to keep the crib free of stuffed animals, blankets, pillows etc. But once they roll to their tummy you can't keep them sleeping on their back if they don't want to LOL

Hope some of that helped! and good luck on Fri! Let us know what happens; I hope you're able to get all the therapies you want for EJ!

Michelle
My little Kayla - 20 months

Our family website:
http://www.helferichhappenings.com

New Spring/Summer Catalog is out! http://www.discoverytoyslink.com/michellehelferich

 
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(Login EmilyElizabeth)

Thanks Michelle! (m)

March 16 2005, 10:46 AM 

I will probably present my revised goal list to her EI team on Friday in this same format. I am going to go through and cross off the goals she has already met like sitting independently, responding to her name, object permanence, ambi rolling, ect and add new ones like shape sorting, color recogonition, crawling on all fours, standing independently, ect...I will post it as soon as I get it done.

Thank you so much for answering my questions...I should have posted this when I went in for her review 6 months ago! I have calmed down a bit in regards to choking hazards (in part due to an infant CPR course), and yesterday was the first time I let her go to town while I was alone with her while she ate cheerios...and didn't take them away after 5 minutes! She has been self feeding with her father and grandparents for about 6 months, but I have had to ease myself into it gradually because I was so neurotic about her choking (especially because I am often all alone with her...somehow another person in an emergency situation is calming for me). I used to break her cheerios up too AND I would also soak them in water first so they would really be meltable! LOL!

Anyways, the result of my over protectiveness is that her pincer grasp is underdeveloped and she tends to rely on her palms alot when feeding herself - she uses the pincer grasp to get the obget into her palm and then shoves her palm into her mouth. Yet another goal for my baby...

It's funny now reading some of my questions...I did used to turn her over in her sleep! LOL! Once she was 7 months or so, we just gave up...

Thank you so much for posting you IFSP! It is a great example - detailed and very specific. It also sounds like you do have a dedicated, reliable, and all around fanbulous team! I'll have to admit though that reading Kayla's IFSP was sort of a shock for me. Emma is nowhere near most of those goals and while I am soooo proud of her accomplishments, they seem pretty basic.

EJ initates peek a boo (no patty cake though), claps, waves, can suck on a straw with LOTS of prompting but it isn't a successful way of drinking for her nand it is SO inconsistent; can sip from an open cup that is held for her (otherwise it is everywhere); can successfully drink from a sippy cup (or once upon a time could but I took it away for fear of tongue protrusion issues); and has occassional (read as RARELY) combat crawled. She is not sorting or giving us objects...instead she bangs them together and throws them as far as possible. She has been saying "da" for eons but no "ma" or anything else resembling actual words. We have only recently started signing with her so no progress there. Though I do think she is starting to understand words better...I always say "All Done" and use the sign for "all gone" when her food is all gone or her bath is over and last week when I did it she threw a fit...twice! My little piglet was not ready to be done and I made her soooo mad! LOL!

Anyway, sorry this is such a saga, but I'm really impressed with alot of the development I hear about on this board, and reviewing others' IFSP's has made me realize that EJ is probably more delayed than I had thought. I am trying to not fall into the comparison trap, but as our EI team won't give me any developmental age ranges on any skill sets (I think because EJ automatically qualifies for EI based on diagnosis alone), it's really hard for me to gauge her progress. I am trying to not feel to disheartened, but some days it's more difficult than others. I know she has her own timeline, but some days I struggle with not knowing it...

OK, I'm done emotionally unloading on you.

WTG Kayla! You are a star! I can't get over how early she crawled!!!


Emily
Mother to Miss Emma Jayne
Lilypie Baby Days
http://www.babiesonline.com/babies/e/emmajayne/

 
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(Login mdbeau)

Oh Emily I have to tell you...

March 16 2005, 2:56 PM 

I know when I first read your post you said these were goals from 6 months ago, but when I got to the questions for some reason I thought they were separate and you were going to ask those at your upcoming meeting! Needless to say I was sorta wondering why you were worried about tummy sleeping when she was over a year

Also keep in mind our girls are around 8 months apart and that can be quite a difference! I remember 6 months ago thinking things that seemed so far off to what Kayla might do and then she does them and completely surprises me! And don't ever think any of EJs accomplisments are pretty basic! Every single accomplishment is such a big one and to be celebrated over!

I was like you with being neurotic about the choking too! That's why her ST initially said for me to crush up a cheerio in my fingers and put that in her mouth so Kayla would realize it was a different texture (I think this was more for my benefit than Kayla's LOL) and to break them up. It took me a while of breaking them up before I would give her a whole one. And THEN! I would put a handful on her tray and she would rake them up and shove them all in her mouth and of course I freaked at that! I immediately put my finger in there and tried to take them all back out I thought no way does she need to have all of them in her mouth at one time LOL I think I've come a long way But maybe not...do you buy those veggie crakers from gerber? I broke those in half when I first started giving them to her; I just now started giving them to her whole! I think it also has something to do with her not having all her 4 front teeth - those are just now coming in - but she has side teeth on top/bottom and left/right. So she never held a cracker in her hand and just took a bite of it with her front teeth - so I always break everything up for her into bite size pieces

And about the comparison thing - I think we all probably do it. Even though we say we're not, even though we know we shouldn't, even though we tell ourselves each child is different, we all do it sometimes. Even parents of typical kids compare between their kids too. I'll tell you how the "comparison bug" has bitten me lately! A friend of mine has a boy who is about 4 months younger than Kayla. She had been teaching him signs too and he knew about 3 or 4. I told her about the Signing Time video and let her borrow ours...within a couple of days he probably picked up like 10 more signs from the video...and he does a few that Kayla hasn't done yet but that we've been practicing w/her months (or it seems like months anyway!) So I wonder why he picked them up so fast See we all do it!

I think there was probably more I wanted to say, but now I don't remember what and I've written my own saga! LOL

Michelle
My little Kayla - 20 months

Our family website:
http://www.helferichhappenings.com

New Spring/Summer Catalog is out! http://www.discoverytoyslink.com/michellehelferich

 
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(Login lovinmyandrew)

Our IFSP's have never been this specific

March 16 2005, 2:06 PM 

My therapists don't like specific goals like "put a cheerio into the bowl 10 times" into our IFSP becasue they think the state can like hold them to that goal while others go un-worked on. I balked at this at the beginning, but then I realized that here is what I really wanted for Andrew:

To develop as close to the typical development curve as possible (in all areas of his life). I am aware of the typical development curve and we work toward these goals.

Having said that, I just did Andrews 18 month IFSP and it ended up more specific then usual (I think). I don't have a copy back yet, but I will post it as soon as I get it.

Good luck ladies.

We are now worrying about pre-school here



Becky & Andrew (18 mos. old)






 
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(Login mdbeau)

I didn't think Kayla's seemed to specific either

March 16 2005, 2:43 PM 

in some of the areas...especially compared to how specific I've seen others - or especially IEPS! those scare me already LOL I think you have a great idea on what you want for Andrew and it makes perfect sense!

Aaahhh preschool already?!? I don't even want to think about that! How often would Andrew be going?

Right now Kayla goes to EI "class" which is at the ECI center; but it is only 1x a week for 1.5 hrs.

Michelle
My little Kayla - 20 months

Our family website:
http://www.helferichhappenings.com

New Spring/Summer Catalog is out! http://www.discoverytoyslink.com/michellehelferich

 
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