Tag: education

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Music Therapy for Children with Down Syndrome

My 5-year-old son singing Twinkle Twinkle Little Star, while he plays the ukulele. It’s music to my ears! With a dual-diagnosis of Down syndrome and Childhood Apraxia of Speech Troy struggles to speak intelligibly, but somehow he speaks much more clearly while singing.

Speech therapy twice a week, and total speech immersion in an inclusive preschool class has helped Troy make great gains in speech intelligibility. But it’s his love of music and singing that has continued to show me where we should place our efforts.

Music therapy can seem frivolous, but research supports connections between speech and singing, rhythm and motor behavior, memory for song and memory for academic material. Music is processed by a different area of the brain than speech and languages, so a child may be able to more easily absorb information and skills presented with music.

“Music organizes the brain. The child strums the instrument with his right hand, which stimulates the left side of the brain. The left side of the brain is the center of language and speech, which is one reason Troy can speak more clearly,” explains my son’s Music Therapist, Kendra Carson. Kendra has been a certified practicing Music Therapist for 16 years, and has worked with all ages.

Read related post here: Teaching Your Child with Down Syndrome to Read

Kendra says music therapy isn’t about music production. “Music is just the tool I use as a therapist to see what Troy’s non-musical needs are and facilitate non-musical goals,” Kendra says. She incorporates Troy’s speech goals into each session, and many songs like “Old McDonald” incorporate sounds and words that Troy struggles with as a child diagnosed with Childhood Apraxia of Speech.

The American Music Therapy Association defines music therapy as “an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals. After assessing the strengths and needs of each client, the qualified music therapist provides the indicated treatment including creating, singing, moving to, and/or listening to music.”

Even if you don’t have the time or money for private music therapy, you can incorporate music into your daily life to benefit your loved one with Down syndrome. Kendra taught me how to put familiar books to music. For example, Troy has memorized the book Brown Bear, Brown Bear. When we sing the words in the book to the tune of Twinkle, Twinkle, Little Start he can read the book more fluidly. I’ve also helped my children learn my phone number and our address by putting them two easy tunes.

Read Related Post Here: Travels of a Posterior Walker

This doting sister shown below shows off her natural music therapy skills in a social media video that’s gone viral. She shares the joy of music to help her toddler brother with Down syndrome learn to speak his first words. Check it out!

As a parent of child with Down syndrome, I understand that fitting one more therapy in can seem impossible. But many music therapists will come to you, and many local Down syndrome affiliates or county developmental disability boards offer scholarships to families for therapies and other activities.

You can find out more about Music Therapy and find a certified therapist in your area HERE. Does your loved one with Down syndrome love music? How have you facilitated this love of music to help him or her in other areas of life? Share your story with me below.

 

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Everything I Need to Know About Inclusion I Learned in Preschool

The sign over my twin sons’ preschool states: “Where Wonder Begins.” I was filled with euphoria reading those words three years ago, when the boys were starting preschool just shy of 3-years-old. I believed I had hit the jackpot. An inclusive public preschool for my son with Down syndrome right out the gate. A place where he would not only belong, but would thrive in “wonder.”

My husband always giggles when we walk past the sign for an IEP meeting. He jokes that no sign could ever match my idealism and pragmatism of inclusion for my son with Down syndrome. He’s right, of course.

Read Related Post: Building the Perfect IEP

Don’t get me wrong, my sons’ preschool experience was great. Attending their third and last preschool performance and last day festivities, I couldn’t help but sit in wonder at how much they’ve grown. Both are equally ready for kindergarten.

But these past three years were a huge learning curve, mostly for myself. I went into my sons’ preschool experience with one notion of inclusion and advocacy, and left with a completely different one. I assumed if you found the right school or great teacher, that everything else would fall into place. Inclusion done right, is a lot more than that. Most school’s have a system in place for special education, and they’re not eager to provide a different path unless you politely push. If you don’t speak up and ask questions, your child might not get what they need for their “individualized” education plan. You have to keep the lines of communication open with the IEP team, learn to collaborate and compromise, and stand firm on specific ideals that you hold dear.

Preschool is a time of exploration for children. I used the time for the same purpose when it came advocacy. Here’s what I learned:

1. Every school, teacher, and parent’s definition of inclusion is different: When looking for an inclusive school, don’t believe just one source. I made that mistake when we move to the area. A few parents with children with Down syndrome said this district was the most inclusive. I soon learned that, although the preschool is half typical kids and half kids on IEPs, K-12 is much different. Most students with significant disabilities spend the majority of their day in a self-contained class, starting in kindergarten.

Talk to other parents, but also look up the school’s mission statement, call the district special education director and ask about the district’s policy on inclusion, tour the school and ask about the continuum of placement. You could even look at Due Process results for the district to see if they are violating Least Restrictive Environment regulations. I did all of this for our new school, in a new state.

Read Related Post: A Letter to My Son’s New School

2. Use this time of exploration as on-the-job training: Even though I was an educator and sat in on many IEP meetings, I had never sat on the other side of the table as a parent. I soon realized that I had a lot to learn about the IEP process. At first, I focused solely on building strong IEP goals for my son, thinking that was the ticket to academic and social success. I soon realized that IEP goals only scratched the surface of access to a truly inclusive experience. Present levels of performance, parental concerns, specially designed instruction, accommodations, progress monitoring…I essentially ignored all of these things the first year of preschool, but soon realized that the only way my son was going to meet his IEP goals was to ensure those other parts of the IEP were clear and strong.

I ended up taking a year-long special education advocacy course from the Council of Parent Attorneys and Advocates (COPAA), to learn the ins and outs of the IEP process. I don’t regret it! I would encourage you to take workshops and read books on inclusion, as well as the IEP process. Knowledge is power! What you’ll find out is parents have A LOT of power when it comes to the IEP process. Use it to your child’s advantage.

3. Failure is not fatal in preschool: Research shows preschool leads to better academic and social gains in kindergarten and beyond, in part because children have a chance to practice in the process of school. The pressure is off in preschool. This is true for advocacy too. Allow yourself to dive deep into the IEP and special education process. Learn all there is to know before your child starts kindergarten, and don’t be afraid to make mistakes.

The beauty of preschool is that you still have time to develop educational expectations for your child and their school. There’s no deadlines, tests, or real pressures to contend with. Enjoy the time with your child, while doing your research. You’ll go into kindergarten having practiced the process, and ready to advocate for what your child needs.

I’m glad I took these three years to play with the idea of inclusion and what I want for the next 13. What is preschool like for your child with a disability? Comment below with your story or tips for other parents.

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4 Tips to Prepare for Your Child’s Next IEP meeting

If you managed to survive your child’s Individualized Education Plan (IEP) meeting unscathed you deserve a MAJOR AWARD. Even if you walked out of that room full of teachers, therapists, and school administrators wanting to hurl, there’s hope.

IEPs are fluid. This is not an end game. Your Child’s IEP “is not a form” according to Supreme Court Justice Chief John Roberts.

Other than your child, you are the most important person on your child’s IEP team. That’s because you know your child best. Likely, you’ve become an expert on your child’s strengths and weaknesses.

If you’re reading this, I know you’ve spent countless hours scouring the Internet for expert advice on inclusion and educational best practices.

Still, an IEP meeting can often feel like an episode of David and Goliath. You playing the part of David.

So, now is the time to get organized. Rally the troops, because this year’s IEP meeting is going to be EPIC!

Here’s 4 steps to make your child’s IEP meeting run as smoothly as possible: 

  1. Never go alone to an IEP meeting!
    • An IEP team meeting can include countless school personnel, often with their own agenda.
    • If you can afford it, find an non-attorney special education advocate in your area by searching the Council of Attorney and Advocates directory here. A good advocate can cost you anywhere from $200-$1000, but it may be worth your weight in gold to have someone in your corner who knows the law.
    • If you can’t afford an advocate, invite an friend, pastor, neighbor….anyone who is less emotionally invested than you are and who can take good notes.

2. Organize all those documents CHRONOLOGICALLY!

  • As a former teacher, I realize failure to document can come back to bite you in the “you know what.” Keep all of your child’s records – from evaluations to letters home to IEPs to that adorable little Mother’s Day painting he made you this year. But how?
  • First, go out and buy the BIGGEST 3-ring binder you can find.
  • Display the most INNOCENT picture you can find of your little rugrat on the front, and have a bio of how amazing he is on the inside cover. Click here to learn how to make a bio like my son’s. Bring this with you to EVERY IEP meeting (make sure you hold the folder picture-side out–for all to see)
  • MOST IMPORTANT: Organize your documents chronologically! I’ve tried creating categories for my son’s IEP folder, but I soon realized the categories are ENDLESS (IEP, ETR, Behavior, Communications, Resources, etc). Also, some of the documents could really be under more than one category (which category do you choose then?).

  • My best advice, create a table of contents with the following: date, author, type, significance. Number each document and place them in order of date. Then you can quickly look back at your table of contents to find your child’s “1st grade ETR”. 3. Save all communications!

    • Communication is EVERYTHING! Save it all: emails, letters home (see step 1), even text messages.
    • At the end of each email I send to school personnel I always write: “please add this to Troy’s educational record.” Emails can often get lost in the ether, but they can be very powerful if you need to make a case for a change in your child’s IEP later. Make sure you make them a part of your child’s official record.
    • The easiest way to save emails if you don’t have a physical copy and don’t want to print it out, is through email files. Most emails (I use Gmail) allow you to create folders.
    • I have a folder for Troy in my email, and even have sub-folders (for behavior, IEP, and therapies).
    • Any time I get an email I save it in the appropriate folder. I even email text messages to my email to save.
    • This is especially important if, for instance, you keep getting an email about your child’s behavior. Keeping a paper trail (or in this case, an email trail) will be crucial for getting your child the help they need. Most schools require evidence of a continued problem before they’ll shell out money for say a formal behavior assessment.

      4. Save all resources in LiveBinders!

      • I learned about LiveBinders from a dear friend who is a professor of bicultural-bilingual studies (so you can use this for non-IEP topics too). If you love reading up on expert advice about Down syndrome, inclusion, special needs law, anything really…then you will be SIMPLY AMAZED by LiveBinder!
      • It’s an online, find-it-whenever-and-wherever-you-need-it organizational masterpiece. My “binders” include: inclusion and law resources, letters to school, modifications to curriculum, literacy, APPs, Introducing Troy to classmates
      • Whenever I find something spectacular on the Internet, I copy the URL and paste it into the appropriate “binder.” Then whenever I have an issue with a particular topic, I can go back to my binder and find resources.
      • You can have up to 6 FREE binders before LiveBinder starts charging you. Check it out!

Let me know what you think of these 4 tips below. And tell us how you make your child’s IEP meeting run like a well-oiled machine! Comment below.

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Extended School Year: A Necessary Part of Inclusion?

My son has a late October birthday, so he’ll spend three years total in preschool. In addition, he’s receiving Extended School Year services this summer. 

It wasn’t easy trying to convince the school that my son needed extra help in the summer. Even though Extended School Year (ESY) is a protection under the Individuals with Disabilities Education Act (IDEA), many school districts push back when parents request it. ESY is a service designed to help students with disabilities maintain all the skills they learned during the school year. The service should be in the child’s Least Restrictive Environment (LRE) and individualized to their needs. These last two aspects of ESY is where many schools seems to stray from the law. Many ESY services can be far from home, not with typical peers, or not individualized. Depending on where you live you may have heard a variation of our school’s argument against ESY:

“ESY is for students who’ve fallen behind. Troy doesn’t need ESY.”

My son at school this summer

This was the argument my son’s teacher made the first time I brought up ESY. Being a new mom, and not yet knowledgeable about the law, I acquiesced.

But the summer after Troy’s first year in preschool, I attended a Wright’s Law Seminar. The seminar highlighted special education law and IDEA. ESY came up and it piqued my interest. Peter Wright mentioned that a student doesn’t have to fall behind to get summer support. I also received several special education law books, that confirmed what Wright said.

Year 2 of preschool, I was ready to argue for ESY!

In January, I asked the teacher again about Extended School Year for Troy. She used the same argument as the previous year. Understandably, ESY costs school districts money and time; something that most don’t have. Although I love his teacher and the services my son had received so far, I wasn’t about to back down.

My son practicing calendar time during ESY

I made sure I got everything in writing, and I mentioned that by law Troy could receive ESY for “emerging skills” that he had not mastered on his Individualized Education Plan (IEP). I asked that the school begin collecting data to see if Troy in fact needed ESY. The teacher forwarded my email on to the principal. During our IEP meeting I received push back, but they admitted he had not mastered his IEP goals and ESY may be an option.

Secretly, I did a happy dance! It’s not that I’m super excited about Troy spending time at school this summer, but I wanted to set a precedent. 

On his way to summer class

We’re military and move a lot. I wanted to make sure ESY was in his IEP from the very start of his educational career. This might make it easier to get summer services at the next school Troy attends.

Plus, even though Troy is just in preschool, he still needs extra help. I liked the idea of Troy practicing routines, classroom behavior, and working on skills like conversational speech and math in the summer. Extra help in the summer makes inclusion more seamless during the school year.

Then my local Down syndrome mom friends started asking me how I got ESY for Troy. I explained my approach and pretty soon they started asking for ESY services for their child.

We started a local Down syndrome ESY Revolution! 

The teachers and administrators realized we were working together. Pretty soon all three students with Down syndrome were grouped together into a cute threesome in my son’s teacher’s class. They’re all working on different skills, but Troy’s teacher can use the group setting to make the summer class more like a real class. It’s worked so far!

Does your child get Extended School Year services? Do you think it’s sufficient and makes a difference in your child’s progress? Let me know about your experience below!

 

 

 

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Accommodations Mean Access

Before I understood the process of the Individualized Education Plan (IEP), I assumed IEP goals were the end all, be all. In fact, my own son’s preschool IEP includes solid IEP goals, but leaves much to be desired for specific accommodations. An IEP must include any peer-reviewed research techniques that will allow the child to meet IEP goals and make progress in the general education curriculum.

Today I’m going to tackle accommodations as a way to access the general education curriculum and make progress on IEP goals. It’s important to note the difference between modifications and accommodations. Modifications change what a child is taught or is expected to learn, whereas the accommodations only changes how the student learns the required curriculum.

Read Related Post: Building the Perfect IEP

For my son with Down syndrome, who is entering kindergarten, I’ve decided not to include any modifications to his IEP yet. I want to give him a chance to learn the same material as his typical kindergarten peers, and meet the same high expectations. I do plan to advocate for modifications when appropriate, and Nicole Eredic’s new book below will help guide me in the future I’m sure.

Read Related Post: 5 Tips for Including Students with Down Syndrome in a General Education Classroom

The following are a list of accommodations I’m advocating for in my son’s kindergarten IEP. This doesn’t include the specially designed instruction or staff training I’m advocating for, which are equally important areas of the IEP. Please feel free to use any that may be helpful for your own child.

  1. Troy will use a visual/picture schedule to assist him to be more independent in following directions and routines and play appropriately with peers across educational settings.
  2. Troy will use assistive technology programs to assist in reaching speech, OT, behavior, and academic goals.
  3. Troy will have access to low-tech writing tools like a slant board, small and short writing utensils, pencil grip, letter and number tiles.
  4. Use manipulatives to make abstract objects concrete.
  5. Troy will have extended time to complete tasks.
  6. Teacher will use wait time (up to 10-20 seconds) to allow Troy to process a question and give and an answer.
  7. A visual timer will be used for transitions.
  8. Troy will have an extra set of classroom textbooks or workbooks available at home.
  9. Troy will have access to audio recordings of books.
  10. Troy will use vocabulary cards that includes the definition and a picture representation of the word.
  11. Troy will have a week’s worth of homework available at the beginning of the week.
  12. Troy will have available extra practice worksheets for at home use to reinforce the curriculum.
  13. Troy will have directions broken down into single steps and repeated.
  14. Troy will have frequent redirection, visual cues, and prompting for inattention.
  15. Troy will have a safe, temporary “escape” area within the general education classroom to take a short break.
  16. 14- point font will be used for all assignments, with colors in high contrast
  17. Troy will use adaptive seating (without restraints), as well as either a copy of the book being read or a sensory object during whole instruction time. Troy may have a hard time seeing and understanding a book being read at the front of class. An extra copy of the book will help with visual perception and attention problems.
  18. Troy will use letter and number and picture symbols or tiles to assist in answering questions and as an alternative to writing.
  19. Troy will have peer buddies to help him reach IEP and curriculum goals.
  20. Troy will use alternative means to demonstrate what he knows (for example: assistive technology, letter tiles, pointing to answers rather than verbally saying or writing the answer, recording his answer instead of standing in front of class to speak).
  21. Consultation between the OT, staff, family and any private therapists regarding support of Troy’s fine motor needs
  22. Parent will be given monthly updates on Troy’s progress towards IEP goals and objectives.
  23. Visual aid to support safety in the classroom (for example, a stop sign on the door to indicate that Troy’s not allowed permission to leave).
  24. Regular bathroom breaks. Troy often will not tell you if he needs to go, so it must be scheduled throughout the day.
  25. Troy will receive positive, corrective feedback on his speech sound pattern attempts as well as visual and verbal cues by all staff and across school environments to promote use of expressive language and increase intelligibility.
  26. Use of a visual positive behavior chart created by teacher and parents to allow for ongoing, daily communication of expectations and performance during Troy’s school day.
  27. Troy will use peer modeling, visual cues, and repetition of directions for classes like art, music, and P.E., as well as during more unstructured times like lunch, sitting in assemblies, and recess.
  28. Troy will have access to a classroom paraprofessional that will promote independence and safety.
  29. Accommodations for Lockdown and Evacuation Drills: Troy will have a specially assigned adult to monitor him during all evacuations or emergency drills. Troy will have access to a safe location close to his classroom for evacuations and emergency drills, as running a far distance may be prohibitive. He will have access to a sensory object to calm him down during tense situations.

I’d love to hear your ideas for accommodations in younger grades for students with disabilities. Please share your ideas below!