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.

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

Book Review: From Emotions to Advocacy, 2nd ed

An invaluable reference for parents who have children with special needs! It's so easy to read and easy to navigate. The book talks to me, at my level of understanding. I'm new to the IEP (Individualized Education Program) process and the special education scene. Matthew transitions out of the Early Intervention (EI) program next week when he turns 3.

Judge this book by its cover! It truly is a Special Education Survival Guide. The authors, Pam Wright and Pete Wright, offer vital information on everything about special needs education and practical suggestions for many typical scenarios from preparing for the IEP to resolving conflicts. It's very comprehensive.

The book is divided into five well-organized sections. Section 1 helps parents to organize their thoughts and ideas in advocating for their child. Section 2 has chapters on learning the rules of the game, common traps and obstacles, tips for conflict resolution and crisis management. Section 3 includes information about evaluations, various tests and measurements, file organization and a wonderful how-to chapter on writing SMART (Specific, Measurable, Action Words, Realistic and Relevant, Time-Limited) IEP goals. Section 4 is packed with the nitty gritty of Special Education Law. Section 5 discusses tactics and strategies to manage and win disputes, including the best ways to document information.

I found the chapters in section 3 and the chapter on creating a paper trail in section 5 most helpful in preparing me for our first IEP meeting.

Just browsing through the content of the rest of the book, I have a feeling this will be my "bible" in advocating for Matthew's education.

Have you read it? What do you think?