The Riverbend Down Syndrome Association is a 501(c)(3) non-profit organization and can receive tax deductible contributions. Our Employer Identification Number is: 14-1982424. Puttin For Down Syndrome by Tim Nienhaus. Friday, September 28th was a gorgeous day for an exciting charity event. Puttin For Down Syndrome held its third annual golf tournament and silent auction. Twenty-six teams played golf and the reaction was unanimous, fun was had by all. Clinton Hill Golf Course once again did a tremendous job and the course was beautiful. The day started with Emmanuel Bishop, recent special Olympic silver medalist, hitting the ceremonial first drive. And the day ended with a great dinner, awards, and the silent auction. Congratulations to all the winners. Over $8000 was raised for the Down Syndrome Association of Greater St. Louis and the St. Louis Children's Hospital Down Syndrome Center. There were a tremendous number of individuals and companies that gave us support, but we want to especially thank JS Logistics for being the first major sponsor of our event. But even more exciting was the golf clinic for individuals with Down syndrome. Six individuals were personally instructed by the golf pro Dan Polites and the Altoff High school team volunteers. I think they had more fun than the golfers. Front row: Emmanuel Bishop. Paula Mass. Middle: Audrey Ibata, Grahm Nitzsche, Lydia Orso. Back: Tim Nienhaus and Alex, Dan Polites. Also, it was very exciting to have Channel 5 there at the clinic filming. Thank you to all the individuals and their families that took the time to attend the clinic. What an awesome time! Thanks Again & God Bless, Puttin For Down Syndrome		PUNS Is No Joke: What Is It? Why Should the Down Syndrome Community Care? By Michele Westmaas, E-mail: michele@familysupportnetwork.org Downstate Advocacy Coordinator of the Family Support Network, URL: http://www.familysupportnetwork.org. What is PUNS? PUNS (Prioritization of Urgency of Need for Services) is a legislatively mandated database of all people with developmental disabilities in Illinois, of any age, who have unmet needs for services now or in the next 5 years. It is imperative that every single person with a developmental disability at any age stands up to be counted with PUNS. The Illinois Department of Human Services (DHS) uses the database to determine unmet needs and that information is used to make policy and funding decisions. Advocates use PUNS to push for increased funding and services. Legislators use the data to make legislative decisions about funding, services, and programs. PUNS is not a guarantee of services or a request for services. It is simply a way to document the needs in Illinois. Why should a family with person with Down syndrome do the PUNS survey? Your loved one with Down syndrome must be on the PUNS database in order to be considered for any new services. All future recipients of services will be selected from the PUNS database. When new funding is allocated for any program, DHS will use the PUNS database to select the families and/or individuals to be enrolled in the program. If you are not on the PUNS database, you cannot receive new services when they are available. If your loved one is not listed in the PUNS database, your need does not exist in the eyes of DHS and legislators. When funding and policy decisions are made, inaccurate low numbers may result in lower funding and limited service availability. In order to get services and funding to meet our needs, our needs must be recognized and counted in PUNS.
			moonlight is the newsletter of the Riverbend Down Syndrome Association. Editor: Victor Bishop Web Site: http://www.riverbendds.org/

Your willingness to complete the survey will support advocacy efforts. Accurate PUNS data is an essential tool for advocates when working for increased and improved services. Accurate PUNS data is also an essential tool for DHS and legislators in making decisions critical to the lives of our loved ones. Without a need demonstrated by PUNS, DHS and the legislature may not increase funding, create new programs, or modify existing programs.

For example, PUNS data was critical in determining services to be included in, and in obtaining funding for, the new Children's Waiver. The Children's Home-Based Support Waiver is a brand new program in Illinois providing services and supports to families of children with developmental disabilities (ages 3-21) enabling families to keep their children at home and avoid residential placement. New families to be enrolled in the Children's Waiver will be selected from the families on the PUNS database. If you are a family in need of services, but you are not in PUNS, you will not be selected for enrollment in the new Children's Waiver. (For a fact sheet about the waiver, visit: http://www.familysupportnetwork.org/2007%20Childrens%20Waiver%20Interim%20Fact%20Sheet%2009-12.pdf)

In order to get on the PUNS database, you must contact the local Pre-Admission Screening (PAS) agency for an appointment.

Developmental Disabilities Services Metro East

2900 Frank Scott Parkway W, Suite 928

Belleville, IL 62223

St. Clair County: (618) 236-7957

Madison County: (618) 656-9663

Your PAS agent may come to your home or may ask you to come to their office, but the survey must be done in person with the individual with Down syndrome present. If it is a hardship for you to go to the office, request a home visit. The survey cannot be completed online or over the phone.

Go to http://www.dhs.state.il.us/page.aspx?item=31098 and click on "Appendix 2- Illinois PUNS Form (English Version, pdf)" to review the form before your appointment. Remember, you cannot complete the survey online. However, you can review the questions and think about your answers in advance.

The PUNS form first categorizes need by three levels of urgency:

• Emergency: the individual or caregiver needs support immediately;
• Critical: the individual or caregiver needs support within one year;
• Planning: the individual or caregiver needs support within 1-5 years or their caregiver is aged 60+.

Then it asks you to identify supports and services you or your loved one with a disability needs or will need in the future. Even if you are doing well now, you need to think about what you need to continue doing well. Our families should not have to become dysfunctional to access help! Think carefully about the choices being presented. Many will be obvious.

Be prepared to provide a photocopy of:

• Child's social security card
• Trisomy 21 karyotype or medical letter stating that the person has Down syndrome

It may be challenging to anticipate the needs of the next 5 years. Talk to others with loved ones older than yours to find out what you can expect. Talk to the therapists and care providers working with your loved one to see what they suggest or anticipate.

We are often quite invested in feeling competent and successful. We may be ignoring some needs because we assume they will never be met. Our need to be self-sufficient and competent is vital. Our need to present ourselves to the world as "normal" is powerful. All we want to do is lead a typical life. We bury our struggles. This is not the time to be proud. Now is the time to stand up and be counted.

If you are the main caregiver to your loved one, think of all the things you do that would have to be done by someone else if you were gone. Think of what you need help with in order to live a more typical life. Sure, you are managing, but what could you really use help with? This is the time to think critically about what your loved one needs to be successful, either in your home or his home in the community.

Do not limit yourself to the services you think are available. Imagine a warehouse of unlimited services. If you could write a requisition for anything at all, what would you need?

Consider your current needs and think hard about the life changes you expect in the next 5 years. If you do not anticipate having a need in the next five years, the PAS agent is not supposed to complete the survey! So be thoughtful about your needs! This is your chance!

For families of minor children, the need may be respite or after school care. It may be access to therapies or equipment or home modifications. Can you imagine any family including a loved one with Down syndrome who does not have any unmet needs?

Unfortunately, you cannot expect an instant life change after completing the survey. Completing PUNS does not guarantee services.

But you will know that your data is helping to move the system forward. You will know that you are being considered in critical funding, program, and policy decisions. You will know that you will be considered for enrollment when there is new funding for services that meet your needs and qualifications.

Each year you will receive a reminder to update your PUNS data. Annual updates are mandatory. However, you can call your PAS agent to make changes at any time during the year if your needs change or if you think of a need that you had not thought of earlier. It is important that you remember to update your PUNS data yearly and whenever you have a change in needs.

If you are not satisfied with the survey, feel it has been filled out inadequately or if you feel you have been inaccurately turned down in your request to fill out the survey, you should contact your DHS Network Facilitator at (217) 524-2521 or (312) 814-2735. Please also contact Mike Kaminsky at the Life Span Project at 1 (800) 588-7002.

Visit the Family Support Network website at www.familysupportnetwork.org. Join our mailing list to get important action alerts and periodic newsletters. Send us your contact information by email: InTheKnow@familysupportnetwork.org or postal mail: 5739 West Martindale Lane, Peoria, IL 61615; by phone: (309) 693-8981 or fax: (309) 693-0490.

Contact your PAS agent today to make an appointment to complete the PUNS! Stand Up and Be Counted!

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Down Syndrome Articles

When Jamie entered kindergarten nine years ago, my wife Janet and I worried that he wouldn't be ready. Our concerns were not unusual—but Jamie was: he would be the only child with Down syndrome in Westview Elementary. He was assigned a paraprofessional and "pullout" sessions for occupational and speech therapy: standard fare, these days, for "special needs" children of all kinds. But at the age of six, Jamie wasn't very verbal, and we had no idea how he'd adjust to a real classroom after four years of child care.

Imagine our relief, then, when we went to our first parent-teacher conference in October and were informed that Jamie was "advanced" academically but needed some work with his social skills. He knew the alphabet and lots of fun facts about animals; he had shown off his amazing memory. How, we were asked, had he managed to learn so much?

Last fall, our first meeting with Jamie's seventh-grade teachers was not nearly so cheering. Despite his math skills-he can do two-digit multiplication with ease-he was failing to grasp the concepts of area and perimeter. He wasn't paying attention in science class, where his paraprofessional was doing much of his work for him; and he didn't seem to get French at all.

We'd asked for Jamie to be included in those three "regular" classrooms, on the grounds that he's good at math, fascinated with the natural world, and exceptionally curious about languages. But when we discovered that the next item on the math agenda would be the area of irregular shapes, we agreed to bail out.

We pleaded for French and science, though. "I know he's not getting it all," Janet said to his science teacher. "But he truly loves learning about the world around him, and we don't want that world to close in on him . . . just yet." His French teacher, unsurprisingly, had never had a child with Down syndrome in her class; she assured us that Jamie did not speak when he was called on and did not understand how to write complete sentences in French. "He doesn't write complete sentences in English, either," I replied. "And he's shy about speaking up. But he already knows the days of the week and the months of the year, and he's beginning to understand about time. Now, we don't want him to slow down the rest of the class. So if it's possible for him to take the class pass/fail, we'll do everything we can to help him."

I turned out to be wrong about time: Jamie never did understand why the French perversely insist on calling 7:40 eight hours minus twenty, so I eventually agreed with him that sept heures et quarante would get the general idea across even if it was marked "wrong" on the test. And even though he learned what voyager means, he never remembered that tu voyages has an "s" even though je voyage and il voyage do not. But he negotiated the hyphens and apostrophes of qu'est-ce que c'est with élan, he mastered the form of est-ce que tu? and he turned out to be a whiz with adverbs-getting them right quelquefois at first, then souvent. (Though quelquefois remains his favorite.) His pronunciation got better and better, too—no small thing for a child who didn't learn to read fluently until he was eight. It was hard enough for him to master English vowels and silent letters the first time around, let alone foreign imponderables like ils aiment and les yeux.

One day when we were walking Lucy, our dog, I told him how proud I was of all his hard work in French. He was in no mood for kind words: "it's too hard," he grumbled. "I always fail." He'd said something similar about science as well, when he had trouble keeping track of all the parts of a cell and began to realize that he might not achieve his dream of becoming a marine biologist (I told him he could still shoot for the position of marine biologist helper.) Jamie is fifteen years old; he knows he has a disability, he knows that it's called "Down syndrome," and he's very well aware of how hard he struggles just to stay in the same room with "normal" kids a few years younger than he. He even had an odd moment of illumination in January of this year when the science class turned to the details of human reproduction, and he learned that most of us have 46 chromosomes but that people with Down syndrome have 47. "Wow, one more," he said, intrigued and a little bit impressed. I wonder if he thought to himself, you know, that explains a lot, and whether this was any comfort to him in those rare moments when he thinks of himself as someone who always fails.

But despite his moments of despair, he never failed to remember that étudier and décembre take accents aigus and that mère and père take accents graves. When we asked him, parle-tu français? he never failed to say je parle français souvent or très bien—even though those answers are not quite true. And although he failed his science test on rocks, he learned a great deal about living things—which is where his real interests lie, anyway. When, in response to his query about why one of his Challenger League baseball teammates was bald, I tried to explain to him what cancer is, and how cells could be sick, he replied, "like the cell membrane and the cell nucleus." When we went through the digestive system on one long homework night, I said "let's skip the pancreas—I don't think you know that one," and he shot back, "Lucy had pancreatitis and cannot eat any spicy food."

At the end of the year, Jamie's teachers and caseworkers advised us that eighth-grade science and French would definitely be too much for him. Perhaps they feared that Jamie's parents, the double-barreled Ph.D.s, would push their disabled kid until he broke. "That's fine with us," we said, to their palpable relief. "We just wanted him to get a sense of it all, and to stay in some regular classes for as long as he could." From this point on, we figure, we'll hire tutors for him, and they can teach him at his own pace.

It's true, he failed quelquefois. But in eight years of inclusive education, he learned more about the world than we—or, possibly, he—could have hoped for when he started kindergarten. Now, as Jamie finally leaves the "regular" classroom, all we can hope is that he taught his teachers and classmates a few valuable things about people with 47 chromosomes. And that they'll remember the lesson, too.

I am a home-schooling mom. We are a home-schooling family.

Even now, mid way through year number two of this journey those words still get hitched in my throat when I profess it. "Why?" you ask. As you may know, home-schooling is very common nowadays and especially in the state of Washington, where by some accounts, there are upwards of 20,000 students learning at home. Washington's also one of the first states in the nation to legally support home-schooling (or home-learning as I like to call it), so what's the big deal if we add two more to their numbers?

Why?? I'll tell you why. Because up until about 15 minutes ago (figuratively speaking of course), I thought that people who taught their children at home were either geniuses themselves or certifiable. No in-betweens. No grey area. And since the kind folks at MENSA always write the same thing on the back of my applications, "Don't call us, we'll call you", and I've grown fond of the six brain cells that remain after becoming a parent, I had NO interest WHATSOEVER in teaching my children at home. Ever.

Have I mentioned that our two children have special needs? Who in their right mind would spend ALL day trying to teach one child with sensory integration dysfunction (which for those of you not familiar with the day-to-day life of a child with sensory issues, is on some days, like trying to bathe a cat: it sounds like a good idea at the beginning, especially if the cat is dirty. But in the end, your house is completely destroyed and you just want to drink yourself into oblivion until the memory is distant and your brain is in a blissful fog). But I digress. Our other child, our oldest, is eight and a half years old, has Down syndrome and hearing loss in both ears (which is a VAST improvement after being born profoundly deaf), and has huge cognitive delays as a result of the Infantile Spasms he contracted at the age of six months, (which virtually destroyed all of his previous development and set him back years). They appear to be very different from one another but both require hands-on parenting most of the time. No rest for the wicked, or tired Mommies.

So here I am fifteen minutes later writing about this transformation from dyed-in-the-wool anti-home-schooling parent (especially for kids with special needs) to a happy-and-grateful-we're-doing-it-this-way parent. (The chewing sound you hear is me eating my words.) Who says God doesn't have a sense of humor? Let me give you a little background. I wasn't just pro-public school for my kids with special needs (especially our son with Down syndrome), I preached the sermon loud and clear for all families of kids with special needs from where we lived in Colorado. From where I sat on our community's early intervention council to the preschool oversight committee, and at the state level where my husband and I organized and facilitated parent conferences for families with children with disabilities, the message was loud and clear: children with special needs need to be in a typical classroom with typical kids learning how to do typical things. My philosophy was we as parents must do our part and then some to make the equation work, but the best scenario is that children be surrounded by other children in school. My husband and I had founded the local Down syndrome association in the weeks after Hayden was born and I happily answered our oft-ringing phone to help other parents with therapy questions, systems issues, and how to have successful and meaningful IEP staffings. We are well versed in the letter and spirit of IDEA and I believe that has served our children well. It is our hope that we've helped other children along the way too. And besides, I had plans to join a ladies' golf league. No really.

I passed the local public golf course everyday as I drove my smart and beautiful children to school and I had it all planned out: I would golf on the days I didn't do water aerobics at the local Y, which I did nearly every morning after taking the kids to school. I was set. And now here we are: our now seven year old daughter with sensory integration dysfunction is learning at home, and by all accounts is thriving.

She built a radio with my dad this morning (she really wants to build a robot to clean the bathroom because she hates that chore, but we've managed to convince her to start small), she can tell you more about diamond mining than any seven year old has a right to know (she wants to own a diamond mine when she grows up so she can get the diamonds herself so she's checked out books from the library on diamonds and has done internet searches on diamond mining), and can tell you why Pluto is no longer considered a planet. She still has sensory integration dysfunction but learning at home has taught her how to manage her environment in a much more positive way (translation: she doesn't have nearly as many tantrums as before and now sometimes when she has one, it doesn't even measure on the Richter scale, a HUGE improvement in our family's overall mental health). She still startles easily, sleeps very lightly and gets over-stimulated quickly but overall she is a much calmer child and is able to attend to things like writing, reading and math for much longer periods of time. She may not think the activity is the greatest thing since sliced bread but she is able to do it for longer stretches. She is also able to have a sensory diet at home which we believe supports her ability to learn. She sits at the table with her feet planted on a stool of some kind, often with a bean bag in her lap. Sometimes when she's more fidgety and restless than normal, she reads aloud while standing in a bucket of rice or beans. She's able to take breaks to burn energy and do stretching. I try to incorporate some sort of propreoceptive work into her days. These are but a few of the strategies that we use with her and we are constantly trying new and different "tools" to find better fits. So far her sensory issues don't appear to have affected her cognitively. On the contrary, her brain seems to work in overdrive and it's I who feel like I'm hanging on to the tail of the tiger.

Our son is also doing well, and I suppose at the end of the day, that's the real miracle to me. I'm a self-proclaimed rabid inclusion-ist who has always said that ALL children with disabilities (and DS especially) should be in public schools surrounded by their typical peers.(Isn't that nice of me to not even know your child but already know what's best for him/her?) Hayden had been in the public school system for four years before we dared to open our eyes as to finding a different solution for their learning needs. I had always approached the whole education process from the goal that each child with a disability have all the supports and services he/she needs in the typical classroom and that the general education teacher believes that ALL children can learn and that she/he in turn have ALL the supports and resources afforded her, then there's NO reason why a child with a disability should ever be in a self-contained classroom. I think a big part of me still believes that. I also believed that parents who kept their children with disabilities at home (especially those with DS) were by de facto institutionalizing them. (See, I'm an equal-opportunity-know-it-all. I've never let lack of personal experience or knowledge stop me from opining and bloviating about the choices of others. I'm also a romantic-utopian-vegetarian-right-wing-tree-hugging- Christian-just so you know where I'm coming from).

So we're half way through year number two of learning at home and we're doing amazingly well, considering I'm the one who's home with them all day long. I take no credit for this, so please don't mistake my boasting with self-aggrandizing. Hayden is a wonder. He is a daily walking miracle. Here's a child born profoundly deaf who's had so many reconstructive ear surgeries that I almost have to take off my shoes to count. Yet he is wired from the inside out for music: he has perfect pitch, learns a song after hearing it once, plays his guitar EVERYDAY and the violin almost everyday, and has incredibly clear speech when he's singing (which is most of the time). In Colorado he was in music therapy with arguably the best music therapist in the state and by the time we left he was playing songs on the piano with the help of a finger guide only. Now we have to settle for mom making up songs for EVERY activity of the day. He helps set the table and clear the dishes after every meal and can dress himself (not that he wants to show off that skill too often. I think he worries that I would be bored stiff if I didn't attend to his every whim every minute of the day). His self confidence is staggering. He thinks he's the funniest person in THE WORLD and is an extremely good judge of character (in other words he can tell if a total stranger is worth a hoot or not). He is learning his colors, can say his ABC's as clear as a bell, and can clearly communicate his needs with sign language and words. Granted his needs and wants are fairly simple at this point: to play with water in the bathroom sink and to play the violin. So those signs (water and music) get A LOT of use throughout the day. As does my response: "Not now, maybe later". And maybe the BIGGEST benefit we've realized so far on this journey is Hayden's health. In that he has a reasonably good level of it!! I had come to think of his runny nose as a part of him like his beautiful chocolate-brown eyes. Wow, a kid who's come through SO MUCH medically (including MERSA, a central line to battle relentless inner ear infections, and multiple surgeries) without a constant cold or facial drainage. That ALONE is worth the price of admission for us!

The decision-making process of bringing Hayden home for school began when I started thinking in the late Spring/early Summer of 2005, about Hayden's academic future. By all accounts we had had a brilliant staffing earlier in the spring and everyone at the table had decided that, despite Hayden's psychologically graded "age" and development of about 18 months-2 years old, he would be in the first grade class for at least 60% of the school day and he would be "pulled out" for activities/academics where it was appropriate for the remainder of his school day. He was attending a very progressive school in our district that operated on a year round schedule and a majority of the classrooms had children with disabilities in them. A few weeks after that staffing when we were up here on a three week vacation I began thinking to myself, "And then what will happen when Hayden is in this first grade class? Will he actually be learning? Will he be authentically included in all the class activities?" Not only did a peaceful answer for those questions not come, the only realistic outcome that I could envision was that Hayden would be on a path of social and emotional isolation without any meaningful scholastic experience.

So then I started wondering to myself, "What would be the best possible learning situation for Hayden?" My answer to that was that he somehow have a constant one-on-one para-professional with him... kind of like a private tutor to challenge him and motivate him but not do his work for him (as had been the case during his entire year in kindergarten). It would have to be someone who really knew Hayden and knew when he was manipulating her or when he was genuinely tired/bored/over-stimulated/discouraged, etc... I knew that public schools just weren't set up to provide a fully inclusive environment on one hand and yet provide constant one-on-one teaching on the other. But I knew through my work with him at home and through our home-based OT's and ST's that in that scenario is exactly where Hayden thrived and shined. He really could understand, learn and show what he knew but it hadn't happened during his hours at school to that point.

So now what to do? I barely gave myself permission to even think of the "H-word". And when I did, even for a microsecond, my whole body would shudder and I'd start hyperventilating.

Back then those nasty episodes were brief but the longer our vacation lasted (that's another epic story in itself) those pesky "H" thoughts popped into my mind like those obnoxious pop-up ads on the internet. "It's something I ate", I kept telling myself, willing myself back into my reality that I couldn't POSSIBLY teach my son at home and hope to accomplish anything close to an IEP goal. And there was the "little" sister to think about too. By this time she was due to be enrolled in kindergarten in the Fall but both my husband and I had already wondered how she could possibly handle a typical day in a typical kindergarten classroom, where even under the best of conditions and classroom management, it would be a very stimulating and very busy day for her. How would she be able to cope after school when she couldn't even handle the two day a week preschool she had attended for two years?

I gave myself permission to think about the BIG "what if". "What if we taught Hayden at home?" My knee jerk reaction was that the sky would fall in and Hayden wouldn't have a snowball's chance in you-know-where to learn anything functional, like how to read, write, dress himself, how to really learn how to communicate by sign or speech or how to stand in line, sit with his hands in his lap and not bother his neighbor. After all, that's what school's for right? But I didn't want to be ruled by knee-jerks and my heart palpitations so my husband and I really started talking about what it could look like if we kept the kids and taught them at home, and we came to the conclusion that 1) We really do know Hayden better than anyone and he loves us and trusts us more than anyone (that seemed like pretty good motivation) and 2) Chances were we couldn't do any worse than what had already been done with and for him in the previous four years in public school. (I know, I know, not exactly the biggest internal vote of confidence. Where's the USC Marching Band when you need it?) We could always try it for a semester and if it proved to be too overwhelming, too frustrating, or if we saw that the children were just miserable, we would rethink our strategy. Or if I ran out of serotonin-enhancing pharmaceuticals-that was really the key to my way of thinking.

So here we are: Hayden is more responsive and connected to his environment and the people around him than ever before. He is able to follow directions and respond appropriately when spoken to (whether he chooses to or not is a different matter entirely). He's eating better than ever (that's another story for another time: "Food-Based Sensory Issues vs. The Sanity Of The Parental Units"), and he and his sister Delaney are so close now: their relationship is rock-solid, tight, tight, tight brother and sister, and he is actually learning new things (colors, shapes, words) and building his skills (fine motor, balance, physical stamina) everyday. Baby steps. Good daily routines that serve the children. I try not to "Build Rome In A Day". Translation: I tell myself a hundred times a day that every little thing I do with each child is a building block for the next day, the next skill level, the next practical application. On my good days I readily give myself permission to just enjoy the process of creating a learning environment. On my not-so-good-days I call another home-schooling mom of a child with special needs and she tells me to sit down, put my head between my knees, and breathe into a paper bag and stop flogging myself with the wet noodle. And who has time to flog anyway? By the time I put the wet noodle down, Hayden's walking into the bathroom with the violin...

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