DSR Episode #26: 321Foundation & IEPs!

Just a catchup episode here to keep you up to date.
First we did a quick wrap up on World Down Syndrome Day (March 21).  Then we jumped into the newest and coolest Ds Organization – the 321Foundation.  This new organization was started by a group of families in Delaware – One of which was our very own Rick Kosmalski!  Go Rick and friends!  Check them out at their site and go and like them on Facebook.  Check out the pictures of their kickoff gala on WDSD and while you are there, buy a T-shirt!

Then we simply gave a ‘kid by kid’ update on the IEP process.

• Dexter (~3yrs) is just entering the school system.  Jason had their IEP but they are already in a private preschool and getting some private therapy so it was pretty low key.
• Luke (5 yrs) is ready to go to Kindergarten.  Mark is worried about inclusion and the fact that there is only one teacher for ~25 kids. Luke will likely need some in-class support (an aide).  When you want more than they are willing to give – that is when IEP meetings are tense.  Our plan – bring food! (we actually give more advice in the episode – you should listen…)
• Kayla (7 yrs) is in second grade – To Rick, the whole thing is dependent on the teacher – a good teacher means Kayla will have good year.  At this point the IEP is really a update from the previous year with improvements based on lessons learned.

Here are some lessons learned:

• In general as husbands, we take on the role of ‘bad cop.’
• It is best to ‘go in with a plan’ – in other words, know what services you want in advance.
• The teacher is crucial.
• If you feel that the situation/services set up is not working for your child, intervene IMMEDIATELY.  A ‘wait and see’ or ‘just give it a few months’ is just a bad idea.  You can quickly miss a half a year this way…

If you are looking for a good cause, our first ever DSR guest from waaay back in Episode 3, Dan Moreno, is running a 50K (that’s 31 miles!) in the mountains and desert(!) this weekend.  Show him some love and donate a few bucks to support Research Down Syndrome.
Sorry we haven’t had an episode in a while.  We have two great guests lined up, but we have had bad luck coordinating schedules.  We will keep the episodes coming – don’t worry…
Download Down Syndrome Radio, Episode #26.
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DSR Episode #20: Current Challenges – Ages 2, 4 and 7

In this episode Jason, Mark and Rick each give an update on their child and the current challenges they are facing for their age category.

Dexter, the walking man!

Jason’s Dexter is two years old and is now walking.  What a big milestone walking is! Go Dexter!  Jason has been having trouble finding the right preschool for Dexter.  Unfortunately they have had trouble with schools refusing Dexter based on his disability.  Is that even legal?  The worst one was the school that his older child attends.  That school turned Dex down without even evaluating him.  It seems that Jason and Colette have found a home for Dex now and it is working out, but it did bring them a lot of stress.  So I guess Jason’s big challenges are now related to school, but walking was a big milestone that happens in the 2-3 yr range for our kiddos.  Aren’t they cute when they just learn and they stumble around like drunks?  I love that age.

Luke and the nerds

The Owens Family is working on academics.  What nerds we are!  Luke seems to love letters and we have been pushing reading and writing with the Learning Program, Handwriting Without Tears, TV Teacher, magnetic letters, foam letters in the bath and the iPad.  He seems to be sucking it up.  In fact he just pointed out a typo for me while I was writing this.  We have been facing some school issues.  Our county wants to place him in Kindergarten this year even though he barely makes the age cutoff.  We want to hold him back.  We want him to REALLY be ready when he hits kindergarten where we plan to push for full inclusion! Negotiation with school officials I think will be our big challenge going forward.

Kayla and her court

Kayla turned seven years old recently.  Happy birthday, Kayla!  Kayla herself was unavailable for comment but Rick says their ‘current challenges’ revolve around school as well.  Rick’s big thing is communication.  It is important to respond quickly when things aren’t working.  If you put things off and say things like ‘we should just give it another month’, you can quickly miss a whole school year in an sub-optimal environment.  Rick says to keep pushing and go after the things you need.  We also talked about inclusion and what Kayla’s day was like.  Making friends and fitting in is also a challenge.

That’s our episode.  Sorry for the hiatus.  We had two postponements in a row.  One by a guest and one that is all Mark’s fault.  However we have some really great guests coming up so stay tuned!

We are the Down Right Awesome Dads and thanks again for listening!

~Mark~
Download Down Syndrome Radio, Episode #20.
Better yet…subscribe, rate us and leave a comment on iTunes!

Special needs, a special struggle

By Alejandro Dávila from the Imperial Valley Press:
Diego is a 7-year-old boy with Down syndrome whose parents wish for him to get what most want for their children: the best education possible.
But determining what is the best education for Diego has become an issue of contention between El Centro Elementary School District and Diego’s parents, Keila and Everardo Rodriguez. So much so that since 2009 the district and the Rodriguezes have been at odds over the individualized educational program offered to their youngest son, who is just one of more than 3,000 special education students enrolled in county schools.
 
Disputes could not be resolved and consequently an unprecedented lawsuit in the Valley’s collective memory recently took place.

In the lawsuit filed late last year, the Rodriguezes asked that Diego be placed in general education with full-time support of an aide. According to the lawsuit’s ruling issued in April, Diego’s parents also contested the amount of therapy provided under his individualized educational program, or IEP, which defines the objectives and services a child with disabilities has. 
 

Ninth Annual Trisomy 21 Symposium

Ninth Annual Trisomy 21 Symposium

Saturday, March 16, 2013

Sponsored by the Trisomy 21 Program at

The Children’s Hospital of Philadelphia

www.chop.edu/cme

Trisomy 21 is the most frequently occurring chromosomal abnormality, found once every

800 to 1,000 live births. However, both pediatric and adult clinical care continues to

present significant and unique challenges.

Children with trisomy 21 are at higher risk for congenital heart disease, gastrointestinal abnormalities, endocrinologic disorders, epilepsy, musculoskeletal issues that affect motor abilities, hearing loss, speech apraxia, sleep disorders, feeding disorders, and developmental disabilities, including learning disabilities, mental retardation and autism. Deficits in any of these areas can adversely affect the child’s development and adaptive behavior.

This one-day symposium will provide parents and healthcare professionals with up-to-date clinical information, therapeutic approaches and current research being conducted in the field of trisomy 21.

Presentation Summaries:

Dental Management of the Patient with Down Syndrome (Trisomy 21) Angela Stout, D.M.D., M.P.H. - This presentation will discuss various dental characteristics and

anomalies that exist with patients who have Down syndrome and will review tips for the parent and caregiver to maintain good oral health for their child/patient. Several treatment options

and behavior management techniques will be offered to guide and assist the parent/caregiver to get their child/patient through dental examinations and treatment.

Promoting Health and Mental Wellbeing in Individuals with Down Syndrome: Lessons Learned from the Adult Down Syndrome Center of Advocate Lutheran General Hospital Brian Chicoine, M.D. - Dennis McGuire, Ph.D.Drs. Chicoine and McGuire will discuss findings from a multidisciplinary clinic serving the health and psychosocial

needs of over 5,000 teens and adults with Down syndrome in suburban Chicago. They will discuss the interaction of physical and mental health conditions and discuss ways to reduce the risk of mental health/behavioral conditions. They will also discuss health promotion strategies and behavioral characteristics that are adaptive.

Monica Walters Martinez and David Martinez Self-advocates and Stars of the HBO Documentary, Monica & David Moderator: Ali Codina - Monica & David is a documentary that explores the marriage of two adults with Down syndrome and the family that strives to support their needs. Monica and David are blissfully in love and want what other adults have — an independent life. While Monica and David are capable beyond expectations, their parents, aware of mainstream rejection of adults with intellectual disabilities, have trouble letting go.

Could Using An Advocate Help You Get What Your Child Needs In School?

from ParentAdvocates.org by Reed Martin, J.D.:
LINK
(Written for Autism/Asperger's Digest. Check out this great magazine from Future Horizons)

When a parent learns that their child has been diagnosed on the Autism spectrum they are introduced into what many have aptly called "the special education maze." We all know that parenting by itself is difficult enough but are you now expected to become a special education law expert? Federal studies have shown that most parents of children with special needs spend their energy and emotions on other problems related to their child and accept whatever they are offered by their public school system.

Our experience consulting with thousands of families in all 50 states over thirty-plus years shows that parents will eventually realize that important gains for their child are being delayed or even permanently lost by simply accepting what their public school chooses to offer and by not advocating for more.

What might be lost for the child? The Congress established four educational goals for our children in 1990 in the Americans with Disabilities Act, which were repeated in the IDEA and the Rehabilitation Act (Section 504): (1) to get as close as possible to being able to live independently by the time they exit high school, (2) to learn work skills that make them as employable as possible, (3) to learn how to acquire further education and training beyond high school if possible, and (4) to learn how to gain access to recreation and leisure in the community in which they live.

Congress and the U.S. Supreme Court have recognized that the system works only if there is effective advocacy for the individual child. In several sections of the IDEA, discussed below, Congress recognized that parents need the assistance of advocates. The Supreme Court ruled in their first special education decision that "Congress sought to protect individual children by providing for parental involvement.. " and by emphasizing "the process of parent and child involvement... to assure that appropriate services are provided." Board of Education v. Rowley, 458 U.S. 176, at 208-09 (1982).

We regularly consult with parents in telephone conferences, over the internet, and through internet-based video conferences. We interact with very hard working parents, who care a great deal about their child, and have invested a lot of energy -- but who have hit a "dead end" and often do not know "the next step" to take to make their advocacy effective. Parents often report to us that they have been discouraged by being told "You are the only parent who is not satisfied with our program" or "The law will not allow us to do what you are asking."

For that very reason, whatever step in the process the parent is in, we urge that they consult someone who has been through it before. Join a disability group. Consult an advocate. Learn from others. Share strategies. Keep from burning out. Celebrate each others' victories. You will undoubtedly find someone who has wrestled with a school district on the same issue you are now pursuing. You can learn invaluable information from them and they might join you as an advocate for your child. You will learn that you are not the only parent who is not satisfied and that the law might require the school to do precisely what the school is refusing to do.

Who can be a parent Advocate? There are no real standards at this time. The IDEA statute refers to "individuals who have knowledge or special expertise regarding the child." You need someone you can trust. Someone who truly cares, but who can give you an objective view of your situation. Parents will tell us they want to go to court immediately because a teacher said their child was "a waste of their time and that they did not go to college to teach children like that." An objective advocate will probably suggest that the parent spend their time instead on nailing down a really good evaluation of the child so that they can get an IEP that will direct that teacher in writing to do exactly what they need to do for your child.

A first step is, with the advocate's help, to get the written statements of the parent's and child's rights under the procedures that govern the IDEA, Section 504 and the ADA. Once you get those statements, an advocate who has been through this before can help interpret them. If your school district and State education agency fail to get you the required statements, an advocate can help you write a letter of complaint which lets the school know that you will not accept violations of the law.

Including children with Down’s syndrome in mainstream schools benefits everyone

by Katharine Horrocks from The Telegraph:

I was quite relieved last month when it came time for the children to return to school. Finally I could get some respite from looking after my two children - Alexander, seven, with Down’s syndrome, and Robert, four and a half. Although my boys are pretty good on the whole and play together quite well, they need almost constant supervision. Without it, Alexander can have a tendency to hit the TV, chew toys or wee on the floor, so vigilance is required.

One day just before the return to school, I was in the supermarket and I bumped into an acquaintance with two children, who said how sorry she was that the holidays were over and her children were going back to school. I did have to admit that I didn't share her view. Later that day, I bumped into the mother of an autistic child, and we raised our arms to the heavens with relief, and then compared notes on what time we started our first bottle of wine just to get through the day.

Alexander is now in Year 2 and, although the school he attends is very supportive, of course I worry about his progress and the growing gap between him and his peer group.

Alexander has a Statement of Special Educational Needs, and it is specified that he has 20 hours a week of 1:1 support from a teaching assistant. The school provides extra help to make sure he has support for the full day. He had been really looking forward to going back to school and seeing his friends, but it was inevitable that there will be some teething problems as the school has a shared Year 1 and Year 2 classroom, so there is a whole class of new children for Alexander to get to know, and they need to get to know him too.

It may sound awful to say but, for me, one of the worst parts of the day is picking him up, because of the prospect of hearing the teacher say: “I’m afraid Alexander hasn’t had a very good day…” I wait with dread to hear what has happened. Did he hit someone? Has he had more than one wee “accident”? Has he torn the pages from a book?

I am expected, after the event, to try and talk to him about it. In truth the teachers, TAs and I have a good relationship and work together very closely to figure out how to help Alexander get the best from school and to manage any behavioural issues.

I believe that the policy of “inclusion” – educating children with special needs in mainstream schools – is a good one, and for the majority of children with Down’s syndrome it is fairly successful. But it takes a lot of work from a range of people to make it happen, not least the parents.

Each term the school prepares an Individual Education Plan (IEP), which is then agreed by me and the teachers. Later Alexander will be able to comment on it too.

We normally pick three targets with clearly defined outcomes so that it is possible to tell when these have been achieved. From June until they are reviewed again in November, Alexander’s targets are:

• I will keep my hands to myself when I am sitting with the class on the carpet.
• I will know that when a collection of counters or objects are moved there is still the same amount.
• To hold a pencil effectively so that I can write my name.

We talk to him about these targets a little, but generally it is up to the teachers and TAs to follow through with actions to support him. We’ll play it by ear as to when he is actually asked what he would specifically like to work on.
The big event this term will be the Annual Review meeting, in which I meet with the teachers and various other professionals (speech and language therapist, educational psychologist, someone from the Down’s syndrome and Special Educational Needs Service) to discuss Alexander’s progress and set targets for the year. I have to steel myself not to become emotional at the meeting.
But in my opinion, one of the most important reasons for encouraging inclusion is that a whole cohort of children will grow up knowing someone with a disability – there are 45 more children who will go out into the world having experienced learning with someone (usually) less able than themselves, and I hope it will teach them a little bit about tolerance.
It does have its downsides, though. Alexander is seven and, although he has been invited to birthday parties, he has not yet been invited home to play with anyone after school and, frankly, I’m not sure how we would cope if he were, though Alexander has one particular friend who has been to play at our house a couple of times.
So far, the only times we go to other children’s houses to play are to those families I know from before children, or people we met at baby groups, and it is still seen as normal for me to go along for a chat, too.
But what is going to happen when Alexander turns 10, or 12, or older? We all know how important it is to have friends with shared experiences, and the same applies to a child with Down’s syndrome. That is one of the main reasons why many parents opt to send their child to a special school when it comes to secondary education, so that they have more of an opportunity to make friends.
For the time being, I make sure that we spend quite a bit of time with other “DS” mums and their children, to give Alexander an opportunity to make friends, and it has the added bonus of giving me and my friends a chance to let off steam to others who really understand!

IEP Toolkit available for families of students with Down syndrome

From Let's Talk Down Syndrome:

Gretchen H. Carroll, M.A., Education Coordinator for the Jane and Richard Thomas Center for Down Syndrome, has created and researched the IEP Toolkit as an instrument for families of children with Down syndrome.

Helping Families of Children with Down Syndrome Become Knowledgeable, Prepared, and Empowered Partners in the IEP Process

This IEP Toolkit was written for you!

Here’s a little more about the IEP Toolkit:

The special education system can be confusing, frustrating, and overwhelming. The Individualized Educational Plan (IEP) is the written document that outlines your child’s specific educational program. We know a strong IEP is necessary for our child’s individual needs to be met. Yet it is common for us to feel insecure and unprepared during our child’s IEP meeting. Surrounded by teachers, administrators, and special education personnel, our voice can get lost. This toolkit was written to help you find your voice.

As family members of a child with Down syndrome, we come to IEP meetings with love for our child and a commitment to his or her education. We must also come with a strong understanding of the IEP itself, detailed information about our child’s specific needs, and an understanding of appropriate goals. This IEP Toolkit is designed to help you gather the necessary information. Focused preparation is essential to the development of an effective educational plan, and a strong IEP leads to improved educational success for your child.

IEP step-by-step guide

from disability scoop:

A new guide released Tuesday provides parents with a step-by-step look at how to obtain special education services from their school district.

The 26-page download from Autism Speaks offers a broad overview of the legal rights of parents and students with disabilities and walks through the process of forming an individualized education program or IEP.

The guide was prepared by attorneys at Goodwin Procter for the autism advocacy group, but is written in layman’s terms, using bullet points and flow charts for clarity.

“The IEP process can be daunting, overwhelming and highly frustrating for parents who are trying to ensure their child is getting the appropriate educational opportunities,” said Lisa Goring, vice president of family services at Autism Speaks. “We hope this guide will give families an effective road map that prepares them to make informed decisions and advocate for their child as effectively as possible.”

Though produced by Autism Speaks, most of the information included in the guide is applicable to all students that qualify for special education, irrespective of their diagnosis.