It’s spring break for Nick so I am taking this week off from posting. Tune in next week for stories and information. Thank you for reading and sharing Nick’s world!
Blog #89~ World Down Syndrome Day
The United Nations official recognition of World Down Syndrome Day is March 21st. “Each year the voice of people with Down’s syndrome and those who live and work with them join together to focus attention on what it means to have Down syndrome and how those with the condition play a vital role in communities across the world.” Click on the site below to view events to raise public awareness to create a single global voice @www.worlddownsyndromeday.org.
According to Wikipedia, “Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.”
The Secretary-General of the United Nations Ban Ki-moon said on 21 March 2012, “On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”
World Down syndrome Day.org gives this message on it’s website, “People with Down syndrome face many challenges as children and adults which may prevent them enjoying their basic human rights. Many people often fail to understand that people with Down syndrome are people first, who may require additional support, but should be recognised by society on an equal basis with others, without discrimination on the basis of disability.”
Big Guy, Nick 🙂
My son Nick, is a young adult who has Down syndrome. He has so much to offer and has brought so much joy to the world. He’s made me a better person in the process. If you would like more specific information on Down syndrome click here @
Please help me spread the word about World Down Syndrome this week on social media. That’s what is in my noggin this week. 🙂
Blog #88~ Parent Tips for Better IEP Meetings
My 20-year-old son, Nick has Down syndrome and autism. While driving to his IEP meeting last Monday it occurred to me that he only had one more of these next year. With 15+ IEP meetings under my belt, I have learned a lot about how to become an effective advocate for my son. IEP stands for “Individualized Education Plan”. An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year. There was a time when I was terrified and intimidated by IEP meetings. Here are some things I’ve learned to make an IEP meeting be effective and run smoothly.
Nick’s senior portrait…… 🙂
Here are my top 10 parent tips for better IEP meetings:
1. Establish communication with all the teachers, therapists, and other key members of the IEP team via email. Send a communication notebook back and forth in your child’s backpack. Attend conferences, open house events and if you can, chaperone at field trips and volunteer in the classroom. All of these things will help to build a relationship with the staff and making you feel more comfortable.
2. Designate one notebook for all meetings, conferences and trainings related to your child. Keep a folder for the current IEP and progress reports. Review these prior to the meeting.
3. After you review your child’s goals, make notes for the support teacher/case manager of what you’d like to see for the upcoming year using an “IEP planning form”. Click on the link at the end of this blog to obtain a form.
4. Request a copy of the IEP draft (including present level of academic functioning, and all proposed goals) to review BEFORE the meeting. Go through this with a fine tooth comb making notes in red ink of any questions you have or things you would like to see added.
5. Learn your child’s educational rights. Click on Wrightslaw link provided at the end of this blog below.
6. Don’t hesitate to ask questions and seek clarification.
7. If you feel unsure or overwhelmed bring an advocate from your local support group or a seasoned IEP parent to the meeting.
8. Keep in mind that according to the law; schools do not have to offer the best, they have to offer what is “most appropriate” for your child.
9. The child should be the center of focus at the IEP meeting. A parent’s dream for their child may not be what the reality is. Keep an open mind to this.
10. You know your child the best. You are a equal part of the team, speak up!
If you have serious doubts or concerns about the IEP, ask to take it home and review it further. You are NOT required to sign it if you disagree or have any uncertainties. You only need to sign that attended the meeting. Put any concerns that you have in writing and returned them to school with the unsigned IEP. You can request another IEP meeting.
IEP Planning Form for Parents:
Special Education Rights:
IEP meetings don’t have to be a scary thing. Do your homework beforehand. If you are prepared and keep the lines of communication open, then they can run quite smoothly. That’s what is in my noggin this week! 🙂
Blog #87~Special Needs Parent Checklist for Visiting a New School
It’s almost spring…… that time of year when the scent of IEP’s are in the air. IEP stands for Individualized Education Plan.
The team as a whole looks at the student’s current level of functioning and together design goals and supports needed to provide appropriate education for the student. The placement of a child with special needs should always be in the least restrictive environment possible.
Nick has Down syndrome and autism. He uses a visual schedule to navigate through the school…….
Parents with a child who has special needs can arrange to visit schools and see what the classroom environment looks like. Here are some tips and helpful questions that should be asked on the tour. I would suggest designating one notebook to take to any meetings and trainings related to your child with special needs.
My trusty, battered notebook……. 🙂
Questions to ask on school visit:
*What are the location, size and physical layout of the classroom(s)?
*How many students are in the classroom? What is the ratio of students: adults?
*What instructional methods and materials will be used?
*How will the curriculum be modified for a student with special needs?
*What assistive technology is available?
*What behavior techniques and plans will be used?
*What does the school day look like? (Ask for a printed schedule and to sit in on classes.)
*What kinds of inclusion opportunities do children in special education classrooms have to interact with general education students?
Observation of class and school:
*Watch the dynamics of the classroom. How does the teacher interact with students? Does the teacher individualize instruction?
*What activities were children engaged? Would they be appropriate for your child?
*Do the classrooms and staff seem cheerful?
*Is student work displayed and is the classroom organized or would it be too distracting for your child?
*Are the curriculum, equipment, technology and educational supports up to date?
*How well are the facilities maintained? (Clean bathrooms, lighting, safe grounds, etc…)
*Is there a sensory room available in the classroom or school building?
Once a school and classroom placement decision is made be sure and get pictures or do a video of the new setting for your child. This social story should include the entry, locker, classrooms, lunch room, gym and any other relevant areas the child will be using in the school. Review the social story or video several times before the first day of classes.
Here’s Nick visiting the middle school back in 6th grade. He was skeptical about this new environment as indicated by not wanting to remove his coat and keeping it zipped up to the top……..
As a parent of a child with special needs, remember that you know your child best. You have the right to get in there and see what the classroom environment looks like in order to make an informed decision at your child’s IEP meeting. That’s what is in my noggin this week.
Blog #86~ Down syndrome and Autism… Boy to Man
I find it mind blowing that my son turned 20 years old. What a strange dichotomy. In many ways he is much like a child. Nick still watches Thomas the Tank Engine DVD’s and plays with kiddy toys. He needs prompts with grooming, dressing and navigating throughout the day.
He is small in stature, and at first glance you might mistake him for a middle school aged student. But if you take a closer look, there are signs that he is indeed a young man. His voice is deep and you can see the visible razor stubble on his chin. That, and the fact that he likes to sneak a gulp of his Dad’s beer on occasion. 🙂
Bottoms up Nick……
At Nick’s conference last week, a poignant question was raised. What are his barriers for increased independence? For Nick it is his impulsiveness. It’s that need to push buttons, in particular those big red buttons. He can never be left alone.
For those of you keeping score at home, the current count is 30 pulls since 3rd grade…….
In the Down syndrome and autism support groups we all scratch our heads at the antics that our kids come up with. The reoccurring theme is that impulsiveness. It’s uncanny, the things they come up with to mess with us. So often, our stories are similar. Maybe it’s throwing a shoe out the bus window, coming in like a seagull and swiping something off your plate, opening up the car door while you are driving 50 miles an hour, stripping down buck naked, throwing an iPhone down the toilet, turning the TV volume up to 99, blowing a snot rocket and wiping on the flat screen or pushing the microwave and phone intercom button repeatedly.
Or dumping an armful of hangers into the washing machine…
Hardy har har Nick, good one! There are a lot more pictures in Blog #3~Getting Your Goat, located in the April 2012 archives.
Within the framework of the “barrier question” above, it becomes increasingly obvious that these behaviors need to be controlled and contained. Best case scenario, maybe Nick needs to express his funny side in a more appropriate fashion that is less invasive. There is no way he could survive in a group home pulling such pranks.
We have two more years in the post-secondary transition program. On the day of his 22nd birthday the little yellow bus will stop coming to the door. So, the IEP goals for Nick need to be focused on global independence both in the community and at home. It’s a bit daunting but then again, so was toilet training him. Somehow we survived that. I look forward to the IEP next week and seeing how his program can be shaped to foster a more mature adult version of Nick. That’s what is in my noggin this week!