It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. Early Intervention services should be provided shortly after birth. These services should include physical, speech and developmental therapies. Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some children have more significant needs and require a more specialized program.

Some high school graduates with Down syndrome participate in post-secondary education. Many adults with Down syndrome are capable of working in the community, but some require a more structured environment.

One of our wonderful visitors wrote in asking for activities to do with a group of people to help them get an understanding of what it might be like to have Down syndrome. The activities included are great for parents to present to their child’s class, a teacher to present to her/his class, or even a student to present to her/his class as a project. We appreciate this educator’s commitment to making the world a better and more accommodating. Thank you for everything that you do.

Hi, I am currently a senior at Park University in Parkville, Missouri. I am majoring in Elementary Education and I am presently taking a course named, Exceptional Child. I have an assignment to do on Down Syndrome. I will be developing a better understanding of what it is and the ways in which a teacher can meet their needs in education. I was wondering if there was anyway for you to give me some suggestions on how to incorporate and accommodate to their needs in the classroom? One thing that I am really looking for is an activity that I could do in my class to show my peers and future teachers, what people diagnosed with Down Syndrome are feeling. I know this will be incredibly hard, but I would just like them to get a taste of it. This is why I am looking for someone with more knowledge about Down Syndrome. If you have any suggestions, I would greatly appreciate it. Thank you for you time and I hope to hear from you soon, Sydney

Many of these activities are geared for the physical aspect of Down syndrome.  As we know, someone with Down syndrome usually has low muscle tone, which makes it difficult for gross motor and fine motor skills along with articulating speech. This can give us a better idea of the physical challenges of Down syndrome.

Supplies:

• Hand weights
• Ankle weights
• Large marshmallows
• Socks (ask the kids the day before to bring them in)

These activities can be done in small groups, rotating.  You may also do it as a whole group if you can get enough weights for everyone.  Ask your school’s physical education teacher for supplies.  They may even want to help out.

Activities:

-Holding arms up for one-two minutes…one arm having a wrist weight on it

or holding a hand weight.

Compare and contrast the difference in the arms and how tired the arm with the weight feels. This is how someone’s body with Down syndrome feels.

-Hoping on one foot at a time, first one foot with an ankle weight on it and then the other without. Again compare and contrast the difference of how the legs feel.  This could be how someone with Down syndrome feels when the run.

-Put ½ a large marshmallow up in the palette of the mouth then try telling each other what they had for breakfast.  This gives a good understanding of how difficult it can be to speak clearly.

-Put socks on hands then attempt to tie shoes or play with some toys. This gives an idea of what fine motor difficulties are like.  Try building a house out of playing cards.  This seems like an impossible task.  The important thing is that you tried. Just like it is important for a person with Down syndrome needs to try to do things. That person may just need to get help in different ways.

Also discuss how different people had different experiences because of the different tightness of the socks.  It was easier for some people to tie their shoes than it was for others. This carries over for people with Down syndrome also. People with Down syndrome have all different levels of abilities. Some things are a lot harder for one person than it may be for another. Just like you and me.

Which carries over to one of the most important parts of the lesson. Discuss what the audience likes, such as pizza, music, dancing, and then talk about how people with Down syndrome like these things just the same. The point being made of how much you have in common.

To show off a little, you can have your guest star, the person with Down syndrome, show the audience how flexible he/she is.  You will then be able to discuss how we all have strengths and something we can show do or show off.

Added extras:

Garth Brooks video ”Coming Out of the Fire” has a young man with Down syndrome running in a track meet with typical kids when everyone (except his mom) thought he should running in the Special Olympics. Talk about inclusion.

Talk about Dr. Down and how Down syndrome got its name.

Also attached are copies you can print out of a coloring book and an introduction book. These books helps explain Down syndrome and also introduce your child in a way that shows how much he/she is similar to the other children in the class.  The coloring book is great to be used in class along with this lesson.  The introduction book is great to be used for the teacher before school starts, and also with the whole class, if they are done ahead of time.

A wonderful book to reference is: Understanding

How Children with Down Syndrome Learn

Proven and Effective Techniques for Parents and Professionals

by Susan J. Peoples

Additionally, one of the best workbooks that I’ve run across is a simple coloring book called, “What You Should Know About Down Syndrome” …

The authors of these books have given express consent that they should be used in any constructive way possible. Please feel free to use within your school project as well as in your classrooms going forward.

Information and Resources

If any of our other readers would like to share similar experiences or give special thanks to someone that has been meaningful to child, post something on my “Wall” and we’ll get the process started.

” Ever since my daughter Donna was 18 months old, I have been putting her on a tiny bus for a 45 minute ride to a fantastic school called Association for Children with Down Syndrome (ACDS).

Ok, let’s go back to the beginning … I’m one of those parents that will do anything for my kid. Probably not unlike many of you — The week after Donna was born, I immediately did the research to find out the best therapists and tutors in the New York area and of course nothing stopped me from getting the best of the best. I was very lucky to engage with the teachers and therapists from ACDS and early on, we were very fortunate to have them to come to our home to evaluate and treat her as part of her early intervention program.

Since then, frankly, I would feel lost without them.

So, I now put my little girl on that little bus — are there other schools that serve disabled children closer to my home?

Do I sometimes wish the school were closer so that I could be more involved with parent programs or so that it would be a shorter trip for me to pick her up when she is not well? Sure.

But like the many other parents who reluctantly ship their kids outside of their home county to ACDS, I feel it is really worth it. The school is in Nassau county in New York and parents send their children from Suffolk and Queens counties are commuting to this school. Those of you unfamiliar with New York — this is quite a hike.

ACDS is a very unique place. While it provides services for typical children and those with other disablitlies, the school was originally started for children with DS and they still make up a large portion of the population at the school.

The staff at the school truly are experts when it comes to Down Syndrome as well as all other children but in my opinion, where they really excel is working and understanding the challenges that children with down syndrome need to overcome.

There reputation obviously transcends DS and I imagine this probably is why the parents of children with other conditions feel so comfortable sending their kids to a school.

What amazes me is the caring, dedication and attitude exhibited by everybody in the school. My daughter will be graduating soon and I am sad to see her go, but I know they have helped her reach her full potential to get her ready for this transition into the public school system.

Our relationship with the school will continue throughout her lifetime since the school offers programs for socialization for older children and even housing for young adults.

Laura Suer”

The special education advisory council posted the following advice on how to “deal” with your child’s IEP. Their advice is invaluable. More information can be found on their website here.

Preparation is a must!

If it’s a MET meeting, you need the evaluation to review. Request to meet with the psych beforehand if need be. Don’t try to do the IEP in the same meeting as the MET; it’s too much. Ask to see the goals and a draft beforehand so you aren’t rushed to read through it on the spot.

Make a wish list

Don’t go in with too many little things, it will distract everyone and tie up too much time on small points. Go in with your big list of 5. Don’t get sidetracked. Stick to the points.

Look ahead

If there is a possible conflicting view on services or placement and you think there will be opposition, do your research. Find studies or research to back your views as well as data on your own child that proves your point. This can include home video, work samples from home or anything you think may convey your viewpoint.

Bring treats

Yes, bring treats. Whether you agree with everyone or think they are doing a good job, most likely people are trying very hard and want what’s best for your child. By bringing something, you set the tone for a friendly meeting and show some gratitude for their work (or the work they will be doing!)

Include your child

Depending on age or severity of disability, the child should somehow be included. If they are young or content is inappropriate they can come in the beginning and say hi. Have them bake cookies for the meeting or take video to show that includes an interview. Put a picture in the middle of the table everyone can all remember that it’s the child and what they need- not individual positions.

Regroup when needed

Bring something to sip on when you’re getting upset and need to pause. Leave the room to regain composure if you are getting really upset to gain some clarity. It’s better than saying something harmful. The team will wait.

Take your time

You are only signing that you are in attendance. This is a working document. Hopefully, your relationship and participation will continue throughout the year. This document can be amended or tweaked at any time.

Make sure the “present level” is accurate

The present level in the IEP is the picture of where your child currently is. This drives the goals, which drives the services and placement. If you feel the picture that is being painted isn’t correct, explain why. Remember you don’t see your child at school and they don’t see them at your home. This is a time for both parties to get the whole picture of the child. You can include your own statement of the present level in the IEP. Definitely do this if there is a disagreement.

Learn the process

The more you know about the process, the more relaxed you will be. You will know what you can and can not do. You will know your rights and won’t feel so intimidated. You will be respected as an equal member of the team, not just an emotional parent.

Breathe and BE NICE

Honey catches more flies. Have confidence that you are the expert in your child and the team needs your help. And you need theirs. Your job is to help the team pull together all the parts. The experts all focus on their own specific area. You know the whole child, the big picture and where you think they can go. You don’t need to learn every little detail of every area of expertise in order to be effective. You just need to make sure everyone is one the same page so everyone can be successful.

Send thank you cards after and don’t disappear until next year. This is an ongoing process that needs work along the way. If you cultivate the team the whole year, the meeting will just be a formality and won’t be so scary.