What My Soon-To-Be 4 Year Old With Down Syndrome Is Doing And Learning

At Matthew's first IEP (Individualized Education Plan) meeting last year, I prepared a Developmental Achievement Chart (DAC) and shared it with all involved in the meeting. I try to update it quarterly. It lists what Matthew can do and what he is learning to do. It's very encouraging and exciting to see his progress when I update it.

His 2nd IEP meeting is on September 23 and I think I am ready.

So, how is Matthew doing these days? I'll share a few highlights.

Communication Skills
Matthew can:
- sight read 224 words with comprehension.
- understand more words than he can read.
- understand and independently use size concepts, descriptive concepts, and spatial concepts during structured language activities and sometimes in unstructured settings. Last week, he and Bill were racing a seadoo on the floor. Matthew spontaneously said, "The seadoo is fast!" Sometimes Matthew will give me a hug and say, "Big hug!" We saw a truck drive past when we were out on a wagon ride one day and he said, "A black truck!"
- articulate age-expected sounds in the initial and final positions of many words.
- answer "yes" or "no" questions appropriately instead of just repeating the last word he hears. Today, I asked him if he wanted ice in his cup of water and he said "yes please".

Matthew is learning to:
- sight read 8 or 9 new words per week. It helps him expand his vocabulary and practice his reading skill.
- speak more clearly so that unfamiliar people can understand him.
- verbally express himself with sentences I write for him to read at certain moments. I've never taken a mind-reading course but this is as close as I get.
- use language more conversationally and spontaneously.
- apply more concept words spontaneously each day.

Fine Motor Skills
Matthew can:
- use both hands to manipulate small objects. He shows preference for his left hand most of the time but he still switches back and forth.
- scribble with crayons and markers on an inclined, horizontal, and vertical surface. He can also imitate vertical lines, horizontal lines, and circles.
- twist lids off containers, turn doorknobs, lock deadbolts.
- snip paper with a modified preschool scissors. He can also cut play-doh with play-doh scissors but still has a hard time holding on to the scissors and coordinating the movement.
- turn single pages in paper books.

Matthew is learning to:
- use both hands in a more refined and coordinated manner. We need to improve his dexterity, hand strength, and visual-motor skills.
- draw a cross and simple shapes. We need to work on preprinting concepts.

Gross Motor Skills
Matthew can:
- confidently put his face in the pool, confidently jump in a pool with a swim vest or back float, and doggie paddle the whole length of a pool with a just back float strapped to him.

- jump in place with lift-off.
- jump 6" forward on level, even ground.

- walk up and down a flight of 6" high steps, holding the rail, one step at a time.
- walk up and down a single 6" high step hands-free.
- get on and off his tricycle with minimal assistance.
- hang with arms from a 7/8" diameter bar for 3 to 5 seconds.
- run.

Matthew is learning to:
- float on his back in the pool and improve his swim skills.
- jump off a 4" high step without hand support.
- walk up a flight of 6" high steps holding the rail, alternating feet.
- hang with arms from a bar for longer durations and lift legs while hanging.
- run with proper symmetry.

Self-help/ Independent Skills
Matthew can:
- use a spoon or fork to eat independently.
- wipe his mouth and clean up small messes at the table with prompting.

- take his plate to the kitchen sink after a meal, sometimes without any prompting.

- independently get on and off the toilet with a step stool, flush, and wash hands with verbal prompting.
- blow his nose into a tissue with adult assistance.
- pick between 2 shirts to wear each day.
- fasten the top velcro on his shoes, with prompting.
- step into his shoes to put them on.
- zip up a jacket (after it is started) and unzip with some assistance.
- independently remove socks.
- indpendently put on underwear/ naptime & nighttime pull-ups/ elasticized shorts/ elasticized pants, with verbal prompting and minimal assistance when he gets stuck. He sometimes needs help pulling up the backside of his underwear or pants/ shorts. I also have to hand him the underwear/ shorts/ pants so that he holds the waist and can readily put them on.

- put on a loose shirt over his head and put his arms through but the shirt has to be handed to him ready for him to slip on over his head.

Matthew is learning to:
- use a spoon and fork with more precision, less spilling.

- initiate and verbally communicate that he needs to go potty.
- zip up jacket (after it is started) while he holds the bottom part with one hand as he zips up.
- put on socks with assistance starting. He still has a hard time pulling it from the bottom over his heel up to his ankle.
- remove a loose shirt independently.
- put on underwear, elasticized pants/ shorts, without any assistance with pulling up the backside.
- identify the front of clothing from the back.

Social Skills
Matthew can:
- say "Excuse me" when he passes gas. And he grins from ear to ear.
- say "Bless you" without prompting when he hears someone sneeze.
- say "Thank you" and "You're welcome" most of the time without prompting and at appropriate situations.
- appropriately approach adults, especially when familiar to him. He's very sociable.
- get along with other kids and participate in group activities.

Matthew is learning to:
- appropriately approach, interact, initiate play or join a game with other kids. He's generally shy around his peers.
- ask for a turn with a toy, not just grab toys from Elizabeth.

Cognitive Skills
Matthew can:
- play Memory Game with up to 5 pairs.
- navigate my iPhone, his VTech VReader, and VTech Mobigo independently. He only needs help to slide the screen off the keypad on his Mobigo.
- understand number concepts up to 4, maybe even 5. I asked him to give Elizabeth 4 saltine crackers yesterday and he did it flawlessly.

Matthew is learning to:
- play other developmentally-appropriate board games.
- count with 1-to-1 correspondence more accurately.
- play more elaborately and appropriately with non-electronic toys with better attention span. He usually plays for 2-5 minutes and then he moves on to a different toy.

Senses and Perception
Matthew can:
- attend to tasks well when very alert. He is a visual learner and a kinesthetic learner. He also learns better by experiencing concepts rather than just hearing or reading about them. He tends to be under-responsive at times and benefits from various vestibular and proprioceptive activities for sensory input.
- demonstrate understanding of verbally-given familiar, simple 2-step directions (related & unrelated) in the same sequence it was requested with minimal distractions.
- repeat a verbal sequence of 3 to 4 objects or colors in the same order it was given.

Matthew is learning to:
- stay on task with activities.
- demonstrate understanding of verbally-given familiar, simple 3-step directions (related & unrelated) in the same sequence it was requested.

So this is where he's at developmentally. He will be 4 years old on October 5.

A Step Stool for School

The kiddie toilets at Matthew's preschool are about 2 inches shorter than the ones we have at home. But Matthew is still too short to back up and sit on the toilet. He is one of the smaller kids at school.

At home, we use a product called The Potty Stool, which is also available on amazon.com for $129. It is serving its purpose very well at home, allowing Matthew to get on and off the toilet independently with ease and stability.

In order to replicate his toileting experience at home, and in collaboration with his occupational therapist at school, we decided he would need a step stool for the kiddie toilet at school.

A store-bought plastic step stool like the Baby Bjorn Safe Step was not wide enough for him to get on and turn around on safely as it measured only 13.5" wide x 9.25" deep x 6" high. The Little Looster Booster Step Stool was too high for the shorter kiddie toilet, measuring approximately 26" wide x 19" deep x 8" high.

We needed a step stool similar in width and depth to The Potty Stool at home. It needed to be 18" wide x 11" deep x 6" high. So we (I) decided to make one.

Why not just have the school order one to be made or buy one themselves? Why wait when I can make one easily? Who knows how long it will take to get one made or bought? It will be exactly what I would want Matthew to use until he grows tall enough that he won't need it anymore.

We used:
- (2) 1" x 6" x 10.5" wooden boards
- (1) 1" x 6" x 15.5" wooden board
- (1) 1" x 12" x 18" wooden board
- (6) 1-1/2" long wood screws

The hardware store cut the wooden boards to size. I sanded the splinters and rough edges then penciled in locations for the wood screws. Bill drilled. Elizabeth, our foreman, handed us each piece making sure we had them all. And together we assembled the pieces. It was actually quite simple. And the materials and cutting charge only cost around $25, with enough extra material to make a second step stool.

Matthew, our quality manager, gave us his seal of approval after a test run where he was able to step up on it and slowly turn around without assistance.

I hope it works out at school.

Preschool Graduation 2011

Matthew graduated from his first year of preschool. He confidently walked up to his teacher when he was called, stopping halfway to soak in the applause and clapped along with the parents and grandparents who were there, making everyone laugh and smile and applaud even more. That's Matthew - my little guy who applauds himself and others for any job well done.

He received his preschool diploma. Who would've guessed that my confident little guy had a tearful first two weeks of preschool in November? On his mini-graduation day, he performed right alongside his classmates, moving to the music without missing a beat. They performed to the songs:
- Drive My Car by Laurie Berkner Band;
- We Are the Dinosaurs by Laurie Berkner Band;
- Animal Action by Steve & Greg;
- 5 Little Monkeys Sitting in a Tree by Steve & Greg;
- The Freeze by Steve & Greg.

He may have pouted in the very beginning when he was overwhelmed with the classroom full of unfamiliar grown-ups but he perfectly fine after the first song. After that, he just had fun dancing and being himself, doing what they had practiced for several days. Everyone was SO cute and they all did a wonderful job - teachers AND preschoolers.

One of his new favorite songs is "Drive My Car" by Laurie Berkner Band. I downloaded the song on my laptop and since Bill wasn't able to attend the graduation, Matthew showed off his dance moves at home as soon as he heard it playing on my laptop. And we played it again and again and again...and again, until he got tired.


The song is still playing in my head. He is sleeping now and I have a smile plastered on my face as I replay his graduation in my mind. He actually has pretty good sense of rhythm. I foresee music lessons in his future. Also many months of practicing jumping and improving tone, balance, and strength has resulted in lift-off when he jumps! That in itself deserves a big round of applause!

He'll be starting preschool summer class in the first week of June. And he starts his second year of preschool in August. I was sad that this was the last day that he would see some of his classmates as they move on to kindergarten. But as sociable as he is, I'm sure he'll be high-fivin' and offering hugs to new friends in the coming schoolyear.

A Successful Pizzeria Field Trip

Our first preschool field trip was to Cecil Whitaker's Pizzeria. After a mini tour of the kitchen, the kids made their own pizza.

I had a very squirmy Elizabeth in my arms who would scream if anyone else held her so I didn't even try to hand her off to the other moms who were more than willing to help. She currently has stranger anxiety and separation anxiety issues.

Matthew wasn't too thrilled about using his hands to spread the sauce, cheese, and pepperoni but thankfully one of the teachers helped Matthew through it. He doesn't have a severe aversion to textures or mess but if you gave him the option to use a tool than touch the sauce with his hands, he would go for the tool. So this was a good experience for him. It probably would be a good experience for me too as I don't like to get my hands dirty if I don't have to.

He was looking quite overwhelmed with the new experience and noise after making his pizza and wanted me to hold him. We sat in a booth with one of his classmates. A box of juice made things better for Matthew. Elizabeth was content with her bottle of milk.



His pizza was brought to our table. His usual reaction to new food could involve saying 'no,' turning away, pushing the food away, kissing the food, pretending to bite it, or throwing a tantrum. So I offered him a slice. He bit off a piece of pepperoni, chewed it, held it, and continued to eat the rest of the slice on his own. I was sitting next to him picking my jaw off the floor. And I thought to myself, "Bill would be so proud." Bill's favorite pizza (and primary food when growing up) is pepperoni. Those who know Bill well will testify that he lived on wheat thins, pizza, and pepsi.



I was ecstatic! This was his first time to eat a slice of pizza. More importantly, this is a big step toward our goal of Matthew eating more types of non-Gerber food.

I warmed up the pizza in the oven for dinner and served it in the same box at dinner. He was actually excited to see the pizza and ate 2 slices.



This is a huge success for someone who has been a difficult eater. He had been on 2nd stage and 3rd stage baby food until November last year. It wasn't until he was accepting more store-bought toddler food, as well as some of my home creations, when were finally able to wean him off baby food.

We still have a long way to go in our attempt to add to his "accepted foods" list. I think we can now add pepperoni pizza to the list.

Preschool Update

Well-adjusted. Making progress. Making friends.

These phrases describe Matthew's preschool experience.







When Elizabeth and I took Matthew to school this morning, he walked into his classroom and greeted his teacher with a "hi", a big smile and a hug. With very few verbal prompts, he independently took his backpack off, hung it in his cubby, unzipped his jacket, took it off and hung it in his cubby. Then after giving me a quick goodbye hug, he headed for the toys to play with his classmates. I wish I could've stayed to watch him participate in class but Elizabeth needed to get home for a nap.



Matthew doesn't have the language skills yet to tell me about the things he did at school. So we keep a communication notebook in his backpack. With the notebook, the teacher and I can send notes back and forth and she answers any questions I may have. It gives me a glimpse into Matthew's progress and how he does at school but I still wish for Matthew to be able to tell me stories as I can only imagine that they would usually be more entertaining to listen to when told from a child's perspective.

I'm tickled to hear that they love to work with him. He's compliant, cooperative, smiley, and giggly. He loves to learn and has a great sense of humor.





His articulation has improved since starting preschool in November last year. For example, he says "cat" instead of "tat," he says "zip" very clearly, and he says "v" and many of the letters in the alphabet quite clearly. These may seem like small accomplishments for anyone who might not understand speech delays but they are huge to me. It means his oral-motor strength is relatively better.

Progress is still progress no matter how little.

He is still learning to improve on his articulation. He is also still learning to say 2 to 3-word phrases and learning certain concepts in language such as understanding simple "what" questions. What is the girl holding? What is the boy doing?



He is learning to take his jacket off independently. He is learning to color within a certain area. He is learning to cut with scissors. He is learning to make crafts. He is learning more colors, words, and numbers.

I teach him all of these things at home too - he knew his letters, several colors, and he could sight read before he even started preschool - but preschool provides a different setting. Different kid personalities and a new theme or lesson focus every two weeks makes for a dynamic environment. And I am so proud of Matthew for taking everything in stride. It's a little step to being independent by not having me by his side helping him and learning to ask and accept help from others.

I especially like the social interaction that he's getting at school. He is learning to interact and play with other kids his age. He is learning to make friends. He hugs some of his classmates either 'good morning' or 'good-bye.' He laughs along with them.

He is currently the youngest in the class.



The only thing that I haven't liked about preschool are the bugs that have made him (Elizabeth, Bill and I) sick. Illness struck our household all of November, some of December, 2 weeks in January, and half of February so far. But we chose to send him to preschool instead of homeschooling him and this was to be expected. Thankfully, he hasn't been too ill to require hospitalization or too run down to miss too many days of school.

Whenever I mention school, he smiles and starts naming his teachers and some of the kids in his class. This is his way of telling me about school. He loves his teachers/ therapists and classmates. They love having him there too.

Potty Training

Sitting on his potty chair for the 10th time today, Matthew was successful with a pee potty. Unfortunately, he wasn't sitting quite right so pee shot out over the front guard of the potty chair and soaked my pants since I was sitting in front of him. But I praised him for going. I applauded his effort. That was more important than my wet pants.

He understands that going in the potty is expected and loves the praise he gets for successfully using the potty. He even clapped for himself as he was peeing. Yes, it's a proud moment for us all.

Readiness signs
We started introducing Matthew to the potty in August last year. He was showing an interest in the toilet, imitating Bill or I in the bathroom. He was willing to sit on his potty chair at bathtime and bedtime.

He knows the sign for potty. He can also verbalize "potty." However, without recognizing the urge to go yet, he doesn't communicate that he wants to or needs to use the potty.

Generally, sensory awareness is low in individuals with Down syndrome. This seems to be true for Matthew as he doesn't seem to sense the urge. He is also indifferent to being wet or having a poopy diaper. So in this regard, perhaps he isn't completely ready but we wanted to start the process anyway because of his interest.

Potty Strategies & Ideas
During the Christmas break, we ramped up our potty training efforts, taking him to the potty (roughly) every hour. He now wears pull-ups during the day, even to school. So he uses the potty at school too even if it wasn't originally in our IEP (Individualized Education Plan). He wears a diaper at naptime and bedtime.

However, with the hourly schedule, we seemed to be missing the window 90% of the time. We were either 3 minutes too late or 3 minutes too early. So last week, we decided to take him to the potty every 30 minutes when he's home and offering water or juice as often as possible. Yes, it's a tedious process but we've learned to incorporate it into our day by keeping an eye on the clock or setting a "potty alarm." It certainly isn't easy when I have 8-month old Elizabeth to tend to as well. But the more practice he gets, the more chances for more successes. Each success is a little baby step to being potty trained.

An idea from another mom is to put Matthew in underwear under the pull-up so he'll feel that he's wet since pull-ups tend to wick moisture away from the skin. I'll try it for the sake of trying it but I don't have high hopes that it will work for someone who doesn't seem to mind playing in wet pants.

I also thought of purchasing the "Peter Potty" which is a standing toddler urinal made just for boys. My sister-in-law recommended it as it worked for slowly transitioning her son out of diapers. The Peter Potty purchase has not been made. Amazon.com is out of stock and we haven't decided if we wanted to try this. We'll continue to use the Baby Bjorn Potty Chair for now.

Another thing I tried was putting Matthew on the toilet. But he was not comfortable on it and seemed very unsteady even with me holding him since his feet couldn't reach the floor.

Standing to pee in the toilet isn't an option for him yet either since he is short. Standing on a stool and using toilet targets is another idea I've quietly entertained but haven't tried. He'll need more stability getting up on a stool and standing on it without holding on to anything and I'm afraid it might turn into a messy game, which would involve me mopping the bathroom floor multiple times a day.

A Learning Process
Matthew is learning the routine: use the potty, wash hands and dry hands. He is learning to pull his pants down and pants up, which requires finger and hand strength and coordination. He still needs help with this. He usually falls forward when pulling his pants up. He is learning that he needs to keep his balance when pulling his pants up.

It's the baby steps that matter to us. Some days we take a few steps forward. Some days we take a few steps back.

Potty Tracking
I've been tracking the number of successes and number of times he sits on the potty using my newest iPhone app "ListMaster." More searching led me to more iPhone apps specifically for potty training utilizing reward systems. However, Matthew doesn't yet understand cumulative reward systems so accumulating several stars to earn a treat or a toy will not work for us right now. So I'll stick to the chart I created on ListMaster for now. As you can see, our batting average for success is currently pretty low.

No Deadline
We're taking it a day at a time. Having him potty trained by the time he goes to Kindergarten would be ideal. Age 5 is the earliest that kids start Kindergarten here. Because his birthday is in October, which is past the beginning of the schoolyear (August), he will be going to Kindergarten a few months before he turns 6. So we have time. But if that does not happen, then we'll just have to rethink things.

Asking other moms in the DS community, it seems kids with Down syndrome potty trained at age 5 - 7 on average, with a few trained as early as 3 and a few as late as 8 to 11. Some did it in a week. Some took a few years.

Every child is different though. Maybe Matthew will be potty trained by his 4th birthday. Or maybe Matthew won't be completely potty trained until he's 5 or older. But right now, with his interest, cooperation and willingness (very important!), we feel it is certainly worth the effort to try. It's another little step toward independence.

Stopping and trying again later is also certainly an option.

Your Experiences, Ideas and Strategies
Please share potty training ideas and what worked for you by leaving a comment. I would love to hear them and many parents who read this blog would find it helpful too. Thanks!



Related posts:
Go Potty
Potty Training

The Preschool Adjustment Period

Matthew's been in school for exactly a month now. He started on November 8. The first day was generally fine but he cried on and off for the first 2 weeks. The protesting would start as soon as I pulled into the school parking lot.



It was a big adjustment for him. There were so many new things to get used to - new people, new smells, new routine, new place, new rules, and new expectations - without me next to him for a few hours, 4 mornings a week. That's a lot for this 3-year old. On top of making this big transition, the preschool germs got to him a week after school. He (and Elizabeth and I) have been battling a cold since week 2 of preschool. It was expected since he had never been constantly been exposed to other kids before and we're right in the middle of flu season.

During this adjustment period, I took photos of his school, him in the classroom, some of his classmates, his backpack, his teacher, him exiting the school gate, and a picture of Elizabeth and I waiting for him. Showing him the photos daily and talking about school with 2 to 3-word phrases for each photo seemed to help a little. I'm sure his positive experiences at school helped too. The group activities seemed to be the most overwhelming for him so during the first two weeks, they eased him into the group activities one baby step at a time. At times, they would pull him out of class for one-on-one speech therapy as he did really well with that. Over time, he was crying less and transitions between activities got better.





These days, when I tell him that it's time to go to school, he says "A-ca" with a smile, referring to his speech & language therapist, Monica, who was also his speech therapist when he was in the Early Intervention program. Then he says "kack-kack" (backpack). We put his shoes and jacket on and Elizabeth in the car seat and we're off to school! Calm. Happy. Motivated.

I got to see how he did in school one day when their class had a Thanksgiving party. He was excited to see Elizabeth and I there. With guidance, he eagerly participated in the activities they had lined up for the kids. He was distracted with me there but I saw how comfortable he was to be in his class, doing the activities alongside his classmates.



Looks like he enjoys preschool!

Matthew's 1st Day at Preschool

In the car, ready to go to school. The only times I've mentioned school to Matthew were yesterday and this morning. Without any past experience of school though, my mini-talks of school were irrelevant to him. This morning he was just happy to be in the car. He loves car rides. He loves going places. Sometimes he'll bring his shoes to me and say "shoes, car."


Today was his first day of preschool. In a rush leaving our house, I forgot to take photos at home. To remedy that, I took a photo of Matthew in the school parking lot next to his Lightning McQueen backpack and red lunchbox.


Entering one of the gates at school, I felt nothing but excitement for him. I didn't feel sad that he wasn't going to be home with me anymore. I was certainly going to miss him for 3 hours each day but I knew he was ready for more - friends, learning experiences outside the home, teachers other than myself, and most importantly, independence. Bill and I welcomed this milestone with smiling faces, no sad tears. One of his cousins goes to the same preschool but he is in a different classroom. Still, Matthew was very excited to see his Auntie dropping off his cousin T at school.


His initial reaction upon entering the classroom was what I had expected - overwhelmed by the other kids, somewhat bewildered and very unsure of his new surroundings. He covered his ears in an effort to filter everything that was going on. He chewed on his fingers. He looked all around and a few times headed toward the door. He wasn't crying or upset though - just unsure of what to do and where to go. "Have fun. We'll see you later," I said as Elizabeth and I gave him a kiss goodbye. "I'll let you know how he does," said his teacher, guiding him into the center of the classroom to meet the other kids. And feeling unsure of what to do next, I stepped out of his classroom and headed home wondering how his 1st day would go.


No tears! His speech therapist walked with him to meet me at the pick-up area. He had a good first day, I was told. The only time he almost cried was when everyone was waiting to go home. There were a few kids near him that were crying and it was starting to upset him but he held it together. No tears. He was happy to see me and Elizabeth, greeting us with a kiss.


I hope he does just as well tomorrow.

Initial IEP Experience and Goals

The night before our first IEP (Individualized Education Program) meeting, I was up late looking through my list of goals for Matthew wondering if they were too high or too low. I used my developmental milestone checklists and books such as 'Gross Motor Skills in Children with Down Syndrome' to help me look 12+ months into the future and get an idea of where Matthew would be (might be) developmentally. I skimmed through a few chapters in 'From Emotions to Advocacy' to cram whatever knowledge I could about writing measurable IEP goals into my tired brain.

I wanted the perfect IEP for Matthew's first year in preschool. The IEP is a legally binding document that describes all of special education services Matthew will receive. It includes details of services such as therapies, academic and behavioral goals, percentage of time in the classroom versus time in individual therapy sessions, and progress reports from teachers and therapists. I wanted to ensure Matthew received all the services/therapies he needed, to learn lots and make new friends during his first year in preschool.


The IEP Meeting
I walked into the meeting with Matthew's school records binder, my list of goals, a dozen bagels and a smile. The binder had photos of Matthew on the cover to show everyone at the meeting and make it easy to keep in mind the person whom this IEP was for. The dozen bagels were for myself and the people who would be a big part of my son's development for the next 12 months. He'll be in school from 7:45am to 10:45am, Mondays to Thursdays. And I hoped my smile masked my tiredness.

The school administrator, teacher, speech therapist (ST) and occupational therapist (OT) at school were at the meeting. Matthew's OT, developmental therapist and service coordinator from the Early Intervention (EI) program were also present. I invited the latter three.

The meeting started with a review of Matthew's present levels of academic achievement and functional performance. I loved how the section about his strengths was worded.

Matthew is a very bright little boy with a great sense of humor who loves learning and has a great attention span. At this time, he is functioning at age-appropriate levels in the areas of cognitive development, social-emotional development and gross motor development. His mother reports that he's very visual and pairing objects with pictures or words is very beneficial to him. He learns well having tasks broken down and with lots of repetition.

IEP Goals
His IEP goals were written based on my concerns in each of the developmental areas, specific to Matthew. After all, it is individualized but out of curiousity, I do wonder how similar or dissimilar they are to others' goals.

We have 3 annual goals for gross motor skills.
1. Matthew will propel tricycle 50 feet on level ground including 90 degree turns on 3/4 data days.

2. Matthew will place both feet on 4 inch beam and take 3-5 steps on 3/4 trials for 3 data days.

3. Matthew will go up and down 3-5 multiple steps without hand support (but holding on to rail) on 3-6 inch high steps for 3/4 data days.

We have 1 annual goal for self-help skills (adaptive behavior).
1. Matthew will increase his ability to put on/remove loose clothing without assistance for 10 consecutive data days per benchmark.
One of the benchmarks/ measurable objectives, just as an example, is:
Matthew will put on his jacket and/or backpack with less than 2 physical prompts for assistance for 10 consecutive data days.

We have 3 annual goals for speech with several benchmarks for each goal.
1. Matthew will increase overall speech intelligibility by producing age-expected sounds in the initial position of target CV (consonant-vowel), CVC (consonant-vowel-consonant) and CVCV words contained in repeated carrier phrases (my ___, I ___, etc) during structured therapy activities in 8 out of 10 opportunities over 3 consecutive data days.

Speech goal #2 is similar except the focus is on VC (vowel-consonant) and VCVC sounds/words. And speech goal #3 is to work on two- and three-syllable words since he currently drops syllables.

We have 3 annual goals for language with several benchmarks for each goal (benchmarks not listed in this blog post).
1. Matthew will increase his expressive language skills by independently using 2-4 word utterances to answer target "what' (what doing, what have), "who" and "where" questions regarding a one-sentence story or pictured actions and objects during structured language activities for 8 out of 10 opportunities over 3 consecutive data days.

2. Matthew will increase his expressive and receptive language skills by demonstrating understanding and independently using the following modifiers, descriptive concepts and unit vocabulary words, including but not limited to: in, on, under, over, on top, next to, big, little, tall, short, long, fat, new, old, hot, cold, not/no, bumpy, hard, soft, happy, sad, mad, night, day, etc by pointing to the appropriate picture when named and by saying the appropriate concept word to describe pictures during structured therapy activities for 8 out of 10 opportunities over 3 consecutive data days.

3. Matthew will increase his receptive language skills by following two-step, unrelated directions during structured therapy tasks for 8 out of 10 opportunities over 3 consecutive data days.

We have 2 annual goals for fine motor skills.
1. Matthew will increase fine motor skills by demonstrating independent completion of designated manipulative activities such as using tongs, clipping clothespins, stringing beads 3/4 trials.

2. Matthew will increase fine motor skills by using one hand to manipulate and one hand to stabilize while completing table activities (turning single pages of books, stabilizing paper while marking on it, cutting with scissors) on 3/4 trials.

We have 1 annual goal for feeding.
1. Matthew will increase his feeding skills by taking 5 bites of foods, chewing, and swallowing them, from a variety of tastes, textures, and temperatures using appropriate utensils when necessary in 80% of opportunities for 3 consecutive data days.

The Perfect IEP
The meeting went well. I felt really good about the goals during the meeting. However, in the evening after meeting, self-doubt and questions loomed. Are these goals sufficient? Are they set too low? Is the IEP perfect? Good enough?

I finally came to terms with myself and let go of my self-induced stress a few days after the IEP meeting. Perfection is relative. I decided not to stress over what we had on paper. These were good goals. I had heard many glowing reviews about the school's preschool program. This was a good start. Besides, amendments can be made during the year if needed. And what good is a perfect IEP on paper if it's implemented poorly?

Matthew was supposed to start school after his birthday but due to the tonsillectomy and adenoidectomy scheduled on October 26, we decided to keep him home and away from possible bad bugs he might pick up at school. Getting sick would potentially postpone his surgery. He'll be going to school as soon as he recovers from the surgery.


Related posts:
Speech and Language Evaluation for Preschool
1st Screening for Preschool
1st Staffing Metting & New Diagnoses

1st Staffing Meeting & New Diagnoses

I was expecting two more evaluations - one with the occupational therapist (OT) and another with the physical therapist (PT) - prior to the staffing meeting at the preschool. The OT and PT said that they had enough information from the progress notes from the Early Intervention program and my notes in the Developmental Achievement Chart, which I had prepared and updated. So they didn't see a need to put Matthew through more evaluations. That was nice.

The staffing meeting was held on September 29 with the program coordinator, the school psychologist and speech-language diagnostician. The purpose of the staffing meeting was to go over the results of the evaluations that Matthew did have and from there, determine what services he qualified for and how he qualified. It took a little over an hour to go through everything.

He scored the highest in the Social-Emotional subtest of the DAYC (Developmental Assessment of Young Children). His second highest score was in the Cognitive subtest of the DAYC. Based on the scores in those two areas, he didn't qualify for services. Hearing that he didn't qualify for services actually made me happy. It was reassuring to me that he was doing well, according to a standardized test.

Diagnosis: Speech Impaired - Sound System Disorder
His lowest scores were in the areas of speech and language. Based on the results of the speech and language evaluation, he was given a secondary diagnosis of "Speech Impaired - Sound System Disorder." It means a communication disorder that includes articulation and/or phonology errors. He drops consonants in his speech, drops syllables, has age appropriate letter/speech substitutions as well as irregular substitutions.

Diagnosis: Young Child with a Developmental Delay
Matthew was determined to be a "Young Child with a Developmental Delay" based on the prior evaluations and interviews with me. He qualified for services because of delays in speech, language and Adaptive Behavior (self-help skills).

He also qualified for occupational therapy and physical therapy.

Related posts:
Speech and Language Evaluation for Preschool
1st Screening for Preschool
Initial IEP Experience and Goals

Speech and Language Evaluation for Preschool

I've heard that children generally drop either the beginning or ending sounds in one-syllable words when learning to speak but that children with Down syndrome tend to drop beginning sounds while typically developing children tend to drop ending sounds. I don't know if this is fact based on research or just a speech pathologist's observation from experience. It is interesting though.

The Evaluation - Preschool Language Scale (PLS)
We were in the evaluation room for about an hour. I was allowed to stay in there with him. Some schools do not allow parents to be present in the evaluation room. Matthew fully cooperated for about 20 minutes. There were a few toys used at the beginning of the evaluation to test his receptive language by following one and two-step directions.

He also did fine with pointing to body parts and clothing items. He listened and pointed to pictures of objects in response to "where" questions such as "Where is the dog?" However, he didn't understand "who" and "what" questions such as "Who is sleeping?' - when shown pictures of a baby sleeping and a boy eating - and "What do you wear on your feet?" - when shown pictures of a banana and shoes. It's not because he cannot identify a sleeping baby. He definitely knows to wear shoes on his feet, not his head. He didn't understand the question and what was being asked of him. I guess this is one of the many aspects of expressive language that he needs work on.

Picture after picture after picture, Matthew was asked to say what he saw. This was to get an idea of how he articulated words and substituted certain letters. For example, he says "doh" for "no", substituting a 'd' for the 'n'. And with picture after picture after picture, Matthew's patience and attention span started waning. It was quite gruelling, especially for a 35-month old. Then he was "ah dah" (all done) and turning away. Neither I nor his speech therapist, who also works at the school, could get him to say any more words for the evaluator.

We wrapped up the evaluation with me answering the evaluator's questions. Elizabeth had fallen asleep on my shoulder.

Hot Tip: Prepare a Developmental Achievement Chart
I brought an updated copy of the Developmental Achievement Chart (mentioned in my previous post "Transition Meeting") to this evaluation and it helped answer many of the evaluator's questions in far less time than it would've taken otherwise. Some of the information I included in the Communication section are:
- a list of words Matthew understands.
- a list of words Matthew signs.
- a list of words Matthew verbalizes with consistent sounds, including how he says them. For example, help (ehp).
- a list of songs he "sings" and knows the fingerplay/ actions to.
- a list of one-step directions he understands.

I also listed specific things that I think he needed to work on or is currently working on. For example, opposite the list of one-step directions, I wrote that he needed to work on understanding 2-step directions, related and unrelated, and in the order they were given to him.

The information I provided in the Developmental Achievement Chart will be included in the school's evaluation reports in addition to the progress notes from his therapists in the Early Intervention program. Hopefully this will give everyone involved in his education the most accurate picture of his strengths and weaknesses and a good starting point for discussing and formulating his IEP (Individualized Education Program) goals.

What's Next?
Matthew will have two more evaluations - one by an occupational therapist and the other by a physical therapist.

Then we'll have the staffing meeting to discuss the results and finally the IEP meeting right before his birthday.

Related post:
1st Screening for Preschool
Transition Meeting

1st Screening for Preschool

The evaluation room, with its bare white walls and covered window, reminded me of interrogation rooms in cop shows. Except, in this room, there was a kid table surrounded by four or five primary-colored kid chairs.

I sat in one corner feeding Elizabeth a bottle of milk. The evaluator, who was the school psychologist, explained that the DAYC (Developmental Assessment of Young Children) screening tool will be used for evaluating cognition, social-emotional development and adaptive behavior (self-help skills).

A black briefcase sat on one of the chairs next to the evaluator. The briefcase was filled with toys, not detective case files. Unlike the classic criminal interrogator bully in cop shows, the evaluator was approachable, pleasant and kind. She was just the kind of person Matthew would ham up to. He flashed his dimpled, sweet smile at her whenever they made eye contact.

The evaluation began with colored 1-inch blocks. His task was to put them in another container. He did. Very easily.

Then they went on to stacking. The evaluator didn't know that she was in the presence of a master stacker. He could easily stack 5 or more of these 1-inch blocks. He clapped and said "yay" and looked at her for praise. She smiled and said, "Good job!"

She showed him a key and a paper with a picture of a key and other objects. Where's the key? He scanned the pictures and pointed to the picture of a key. Yay!

When asked to give her one block, however, he had grabbed two in one hand and so ended up giving her both blocks. He clapped and flashed his dimpled smile at her again. Hmmm, nice distraction strategy.

She gave him a doll and pretend food. He promptly fed the doll saying "nom, nom, nom." Then she laid a small blanket on the table to see if he would put the doll on it for a nap. He didn't. I chimed in, "He usually tries to burp the doll we have at home and gives it a kiss." Elizabeth, who had just finished her bottle of milk, smiled at the evaluator. Hmm, was she in on the charm-and-distract strategy?

The evaluator laid a square, circle and triangle on the table. Then as an example, she put another square on the square. Apparently, it was part of protocol guidelines, when evaluating a child, not to provide verbal prompting that he was expected to match shapes. Interesting. She gave him a circle. He put it on the circle on the table. She gave him another triangle. He matched that too. He did another round of shape matching without flinching. She said, "Wow! Good job! Some kids don't know what to do with that."

She gave him a hairbrush and asked him what he would do with it. It was a brush so he pretended to brush his teeth. "He uses a comb at home," I said.

Next, she laid a red circle and a yellow circle on the table. As an example, she put another red circle on the red circle. Again, no verbal prompts about matching colors. She gave him a yellow circle. He put matched it with the yellow circle on the table. He matched the next few red and yellow circles too. His smile almost reads 'Is that all you've got, lady?' I informed her that he also knows blue, green and purple. And maybe even orange. The evaluator was impressed.

She laid a big yellow circle and a little yellow circle on the table. As an example, she put another big yellow circle on the big yellow circle. She gave Matthew a little yellow circle. He smiled and put it on the big yellow circle. I informed her that we were still working on "big" and "little".

Throughout the evaluation process, Matthew got out of his chair a few times to inspect the briefcase of toys. But he always sat back in his chair when directed to.

We were in the room for about an hour. She had Matthew's full attention for about 30 minutes. Not bad at all.

The rest of the time I answered questions for things that couldn't be tested. Does he like to be around other kids? Can he undress/ dress himself? Does he throw temper tantrums? Does he ask for help or bring me toys that he wants to play with? And so on and so forth.

Elizabeth was starting to fuss and yawn. I answered the last few questions swaying with my tired 3-month old baby. Matthew was playing with cars.

The next evaluation for speech and language was scheduled for the following week. The evaluator was smiling, obviously very impressed. Her comment, "Matthew is doing amazingly well" didn't surprise me. I smiled and thanked her. It was so reinforcing to hear that from someone who has never worked with Matthew before.

Way to go Matthew! He has, yet again, made a lasting good impression with his wits and skills. His charming, dimpled smile was just the icing on the cake. He would've made any criminal investigator smile.

Transition Meeting

Transitioning from the Early Intervention (EI) program to the Early Childhood Special Education (ECSE) can be an overwhelming experience for a first-timer like myself. But I found ways to make the process less daunting. We had the 6-month IFSP review last week and the transition meeting yesterday. In our state and our school district, the transition meeting was scheduled separately from the final 6-month IFSP review. Overall, both meetings went very well.

Preparing for the Transition Meeting
1. Attend workshops - I attended workshops such as "Your First IEP" at the 2010 Down Syndrome Conference and "Next Steps" at the local Disability Fair. These workshops gave me a chance to listen and talk to other parents about their experiences with the transition process. I picked up great information and tips at these workshops. It was at one of these workshops that I learned about a good resource called "Transition from Early Intervention". There are also helpful workshops such as "IDEA Part C to B" and "Understanding the IEP Process", both of which I was not able to attend.

2. Prepare a Developmental Achievement Chart - This document lists Matthew's can-do's and things he needed to work on in all areas of development (communication skills, fine motor skills, gross motor skills, self-care/ independent skills, social skills & self-concept, cognitive skills, senses & perception). I typed it up on Microsoft Word, patterned after the downloadable .pdf file is available on the MPACT (Missouri Parents Act) website's resource page. I highly recommend preparing this (or similar document) for the school representative(s) at the transition meeting. I met with three school reps, gave them a copy of this document and they were impressed and grateful to have such specific detail about Matthew's current development. While this document highlights Matthew's many strengths, it also emphasizes the fact that he has developmental delays and still needs help. Hence, he would still need certain therapy services.

3. Prepare a list of questions - I listed all my questions on a sheet of paper. At the transition meeting, I checked off questions as they were answered. My questions were:
- How and when will it be determined what services Matthew is eligible for?
- What does the evaluation process entail?
- Where will the evaluation take place?
- When will the evaluation be? Can we schedule separate evaluations?
- What type of testing may be done? What assessment tool will be used?
- Can a family member be present during the evaluation?
- After the evaluation, when will the results be available? Will I get my own copy?
- Is the Reading of the Evaluation Results scheduled separately from the evaluation day and IEP meeting?
- Are there "typically developing" kids placed in the class at any time during the week?
- Will Matthew be pulled out of the classroom for all types of therapies? Are some therapies pushed in the classroom?
- Are therapies group or individual?
- How can parents communicate with the teacher and therapists? How often?
- What supplies will Matthew need?
- Will the school need hearing and vision information from Matthew's doctors? How current must they be?
- What other information will the school need about Matthew?
- How will teachers and therapists communicate with Matthew, assuming he's still not saying understandable words when he's in the program? Will assistive technology devices be used?
- How will Matthew's classroom placement be determined?
- How many students are there in a class?
- Are there field trips parents can participate in?
- Who can I call if I have more questions?

4. Start a binder - To file everything from communication logs between the school and myself, copies of IEP's (Individualized Education Plan), evaluations, rights and procedural safeguards, and other information pertaining to Matthew's education.

Other helpful tips I picked up from the workshops but didn't apply in our situation were:
1. Visit the early childhood centers or preschools to get a good idea of which one you want your child to attend. - We don't have a spread of choices for special education in our area but the few parents that I had spoken to about our local ECSE program had only good things to say about it. So I didn't feel the need to visit the school or look around prior to the meetings.

2. Explore the necessity of Senate bill 112 - This is for children who turn 3 mid-school year. Matthew turns 3 close to the beginning of the school year so it is not necessary in our case.

The Meeting
Our EI service coordinator, three school representatives, and Matthew's speech therapist, who also works at the school, were present at the meeting. Matthew's other therapists offered to be at the transition meeting but I didn't think it was necessary. I would, however, want them present at our First IEP meeting, which will be scheduled close to Matthew's birthday.

During the meeting, we went over the evaluation process and how services can be center-based or provided at the preschool, daycare, and/or at home. That decision will be made at the IEP meeting. Our preference would be to have Matthew receive services in the preschool setting so that he also gets the benefits of socializing with other kids in his class. Each class usually has a maximum of 12 children, sometimes a few more toward the end of the schoolyear. Each class has "typically developing" kids to serve as role models. I forgot to ask how many there were per class and if they were there during the whole school week, which is every morning for 4 days in the week.

Some therapy services are pushed in the classroom, which means the therapist will work with Matthew in the classroom as they are participating in the class activities. Some therapy services are done in a group and some are individual, depending on factors such as Matthew's needs, effectiveness, and if we choose to specify one way or another in his IEP.

I can expect to receive quarterly progress notes from the teacher and therapists. At the same time, I can contact them anytime if I have questions or concerns. Some parents communicate with the school via a notebook on a regular (maybe weekly) basis if needed. I personally think that a notebook or email would be a good way to communicate with the school so I can have everything in writing.

Since Matthew's current speech therapist in the EI program also works at the school, she will be assigned to Matthew when he is in school. This should make for a seamless transition in speech therapy for Matthew and one less adjustment to make.

The classrooms are packed with toys and activities to stimulate any child's imagination and make learning a lot of fun. As soon as we walked into one of the classrooms, Matthew immediately started investigating the different toys and activity areas. There is a separate area for speech therapy if a child needs to be pulled out of the classroom for it. And there is a separate room for physical therapy (PT) and occupational therapy (OT). The PT and OT room had a trampoline, a swing, climbing equipment and other fun stuff.

From what I gathered at the meeting, everyone seems to be excited about having Matthew there. It was pretty funny and cute to hear about how everyone wanted to work with Matthew and they were going to have to fight over him or draw straws. Some of the teachers/ therapists hadn't met him yet or had only briefly met him. Maybe it was his charming, sweet smile that drew them in. Maybe it's because of all the good things his speech therapist has said about him. Whatever it is, it makes me smile.

What's Next?
The school will contact us in August or September to schedule an individual evaluation. This may be done in several sessions, depending on how many areas of development they will need to assess and depending on how well Matthew puts up with the process. If the diagnosticians/ evaluators get enough information about Matthew's development from updated EI progress notes in August and other information I provide them with, they may not have to evaluate him in some areas of development.

I will write about our experience with the evaluation process once we have gone through it. Stay tuned!


Related posts:
Preparing for the Final 6-month IFSP Review