Do Ask. Do Tell.

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With the new school year underway, parents may be at a loss to know how much to disclose about their child’s diagnosis, whatever that may be.

There is the parent who will over-share, and go back to the prenatal history with the freshman English teacher. There is the parent who will sit back and wait until something goes wrong to mention a disability, like depression. I’ve seen parents present Power Points to captive audiences at IEP meetings. I’ve called parents to say I was so concerned that in spite of the medications I knew the child was taking, he was still having dangerous symptoms, like hallucinations, in school, only to learn that the parent was trying to see how they did “flying solo,” and wondered when/if I would notice. 

Teachers are partners in education with parents, but for 10 months a year, they are prime time players in your child’s life.  A few questions to ask yourself when deciding what and how much to share:

  1. Setting. Are you in a private place, where you have the teacher’s full attention, or are you yelling medical information across a parking lot when Ms. W is trying to get 22 kindergarteners on a bus to the zoo, with their lunches and miscellaneous Epi-pens? A teacher would prefer an email that asks for a good time to  talk than to be asked to multi-task in a dangerous situation.
  2. Audience.  If your child is a runner, don’t just tell the teacher.  Tell the principal, the PE teacher, the custodian, and anyone who is near a door that leads to a busy street.  Bring a picture. Don’t tell the guidance counselor about a peanut allergy, tell the lunch lady or attendants at the lunch table.  Tell your kid’s friends. Proximity to the potential crisis is key. Title or size of paycheck, not so much.
  3. Form.  The tone with which you deliver your message is how you represent your child.  A great autism specialist I know always says, “You are going to love  this kid.” Then she goes on to list the child’s interests and traits she finds endearing.  She loves the kid, and it is contagious. When you love your kid, it comes out in your voice. “He never eats anything bumpy,” is not the same as, “He is a big fan of Jello, yogurt, puddings, and anything that jiggles.  He had a Jello stand this summer. It was awesome. He made $8.”  Talk about your child as if you assume people will love him or her instantly. If it takes a week, they will probably hide it until they can mimic your enthusiasm. 
  4. Topic. Try to bullet point your concerns and the strengths you think the teacher can build on.  My friend’s wonderful son is a gifted actor.  He also has boundless energy. While I know 100 great stories about this child, in a meeting of 60 minutes or so, I’d advise his parents to focus on the characteristics, and save the narratives for other events, like when a social history is being taken down by a social worker (a must do assessment-provides so much insight for the team and shows you where you are strong as a family). I’ve also been in meetings for kids that were derailed by sidebars about other children, which is not very respectful of the parent’s time.  Worse when it is done in a language the parent does not speak. If the conversation gets off track, bring it back with questions like, “Is my child’s skill level on par with other kids his age,” or “What tools or benchmarks do we use to show when he or she has improved”? 
  5. Purpose: If this is a casual meeting, like the first day of camp, or meeting a coach, remind the adult why you are sharing information.  For example, “I am telling you he had diabetes because it is really important that he gets that snack in that you scheduled at 6:00. If there is a change in plans, he still needs to eat.” A volunteer, an aid, or a counselor in training may not realize what his or her role is in all of this. If you expect an outcome or your communication is really a call to action in a certain scenario, don’t forget to say so.  ”He has ADHD,” can mean it takes a long time to get homework started or that the child require a sensory diet to ready his body for learning.  A statement like “Francis uses a weighted vest when he is transitioning to new activities. Please help him into the one we supplied in his backpack before you go to music class,” is more constructive. 
  6. Documents.  Does the child have an IEP, a 504 plan, a doctor’s note, or a list of suggestions from his grandmother based on her wisdom (it happens).  It isn’t that one is better than the others, but some are more legally binding.  Let the staff know where additional information can be found. 
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Autism Now on PBS NEWSHOUR

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April is Autism Awareness Month, and PBS NEWSHOUR is bringing back Robert McNeil to discuss it with America.  Nothing teaches a journalist the facts like living through the event, and in this case, his role as the grandfather to a child on the spectrum informs his reporting.  The series begins on April 18, 2011, but what PBS NEWSHOUR does well, (and part of why they recently earned an EMMY) is use the Web to compliment their reporting, so you can follow the series online at any time.  When I approached them about resources for teachers, they allowed me to create curriculum for high school and middle schoolers, and posted it in less than 24 hours.  Amazing dedication to the topic, and responsiveness to what teachers need. Feel free to download, print, and share the resources in the TEACHER RESOURCES area. The lesson plan is called Autism: Do You Have A Friend Who Thinks In Pictures. You may even wish to share it with an older child who has been diagnosed with ASD, to  help them better understand how their brain processes information.

Party Time

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Seems like spring is birthday party season.  While statistically, it isn’t that everyone is born in April, but the moon-bounces have been out in force, lately.  A few ideas for shopping for kids that you have never met, and teaching some social skills as you go:

  • Ask your child specific questions about what the child likes, based on cues that can’t be misinterpreted. What kind of lunch box does he have? Who is on her backpack? What was his Halloween costume? Does he ever where a shirt like yours, with (Yoda, Hello Kitty, space ships…) on it?
  • Ask you child something funny about his friend.  Does he sing a song all the time?  Does she like to play a certain game? Is he a fast runner?
  • Use the invitation for clues, and talk about this with your child.  ”I see this party is at a gym.  Does he like PE?  Do you think a basketball would be a fun gift?” If there is a character or a theme on the paper products, it is easier to find the right card or the perfect set of Lego bricks.
  • Talk about what to say if the recipient doesn’t like the gift. “I’ll tell his mommy we went to Target, so if he gets 2, they can return it.” Recently, a friend of my son’s told him he did not like his gift, and he could keep it.  My son selected his favorite game for this child, thinking they could play it together.  My son’s response was, “Cool! I have 2 now!” No, you don’t. I found an older sibling and reminded her that the gift receipt was taped to the game.  I knew she would spread the news, later, when we’d all gone home.
  • Discuss why a gift is about the recipient, not the giver.
  • If you are asked to bring a donation, take a moment to talk about where the food/books/school supplies are going.  If you don’t have an idea for a place to donate for children, try www.seedlings.org, because they will Braille a children’s book in honor of your child or the birthday child, for a small donation.
  • Most parties have a beginning, a middle and an end, so they can be planned around pretty easily.  You might remind your child that first, you say hello and give your gift or card, then you play whatever games are planned, and at the end, there is sometimes food, but usually cake.  This will prevent the child from asking (repeatedly) if it is time to go home.
  • Thanking your host or hostess is part of saying goodbye. This is difficult to do when the host is in the bouncy castle.  Your child should try to find the parent and tell them that they had a nice time, or just say, “thank you.”  I tend to call the birthday child’s parent, “The party mommy (or daddy)” and we find them before we go.  I discourage asking questions, at this time, because doozies about the quality of the favors or the texture of the cupcakes seem to be fair game.  They are not.  ”Thank her,” is a better cue in my house than, “Say something nice about the party.”
  • If you were not invited, it is even harder.  You may have to explain to your child that some parties are more like play dates, and are small.  Since you can only control your own guest list,  it is a chance to talk about whether your family would rather plan a modest party for the whole class, or a smaller once, with laser tag and fire trucks, that leaves out a few people who may be disappointed.  Your child can celebrate a friend’s birthday, even if it isn’t party time, by making a card, sharing a snack at school, or just saying “Happy birthday.”

Tiny Bubbles

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I love to use bubbles as a tracking tool with little ones. Seeing any child fix their gaze on something that grows as you create it, and watching it slowly release into the air, as a child tracks it move through the air-the movement is magical.  For children with low vision or muscle weakness, it is functional goal! A challenge has always been that clear bubbles are hard to see, especially on a bright day, and the alternative was, well, balloons.

My son’s teacher showed me some new bubbles created by accident, recreated on purpose, and sold to an major arts and crafts company.  Crayola Colored Bubbles run about $3.99 a bottle.  She was using green in honor of St. Patrick’s Day.  She also pointed out the color will wash out of clothes, but could stain a sidewalk.  We NEVER make the custodians mad, so maybe we’ll try them on grass about to be cut, or just before a soft rain falls upon the fields.

FETC 2011. iMickey?

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Very enthused to have been selected to present at the Florida Educational Technology Conference this year.  This one is about iPhones, iPads, iPod touches and apps that work with kids who have a variety of special needs.  I hope to share a Beta version of the app I am working on with my friend Scott.

Will I see Mickey? Of course! But I am hoping to visit Give Kids The World, as well, to share the app with their special guests.  

iMeltdown? Apps That Address Social Skills, Schedules & Speech.
Presenter Shannon Sullivan
Description Students with special needs, including ADHD, ASD, Developmental Delays, & Vision may find access on a parent’s iPhone that they don’t have in school. Explore apps for work production, communication, and organization, which have a visual component appropriate for those who learn differently. Examine how access to tools can help address behavioral issues in and out of the classroom. Bring your iPhone, iPad, or iPod Touch, or just follow along. Texting & tweeting during session is encouraged.
Focus Area Special Education
Sub-Focus Area Innovating Learning Technologies
Audience K-12 Educators

 

Holiday Gifts

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If you are shopping for a preschooler with special needs, such as vision issues, it helps to go the vendor who has been there. American Printing House (for the Blind) creates toys, paper, stickers, and devices for low vision kids.
Other good, simple, choices are jingle bells, from a craft store, bubble wrap, shaky eggs, bongo drums, “bendaroos”, blocks with bristles, shape sorters, and piggy banks that go “plink”. Many typical toys can be adapted, too. Add Velcro to texturize blocks. Add lemonade mix to yellow play dough so it is scented. Save coffee cans so you can practice “in” and “out” (dumping items out is as fun as knocking over a tower). Crayons can be substituted with smelly markers (office supply stores have the best prices). Golf tees in styrofoam make great toy Braille cells, so keep at least 6.
The link for APH http://www.aph.org/products/recommended.html#early_childhood
Toys R Us has a special guide for differently abled children, free In stores.
I am still a fan of interline books for all children. A site called seedlings has popular print books with Braille overlays.
Finally, I have to brag about Leapfrog products. They tend to speak as they teach. Check them out in person first, and buy extra batteries.
A great gift for a family whose child has a disability is to offer a few hours of respite. Take the other child to a new movie. Offer a date night. Take on a volunteer duty, such as cookies for a holiday swap. No need to take away their “mommy role” but checking an item off the to do list beats a baked ziti, any day, especially a day in December.
Happy Holidays!!!

Advice for aunties, Godfathers, and well-meaning grandparents

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I wanted to post just to highlight a beautiful blog entry submitted to another site.  Hartley’s Life with 3 Boys features the musings of a mom who can claim the active boy hat trick, but she takes ideas from other parents, as well. In honor of the holidays, she had her mom guest blog.

So this is a grandparent’s advice for other grandparents who have a kid walking the planet as a parent of child with special needs.  Some ideas seem like they are tough to live up, such as masking your disappointment when one part of the family has to opt out of plans, but I loved the tone in which this was written.  I see this short list being printed out and left on the dresser around the country.

Another thing I consider is with whom you connect in your talks about parenting of any kind.  For some talks, make sure you have a calm (sober) presence.  Others can happen at the top of your lungs, in public, but each relationship varies.  Are you going to discuss bathroom issues with an aunt who is bound to tell her kids, subjecting your child to being called “poopy” by his or her cousins FOR LIFE?  Are you going to kvetch to a step-brother who is trying to adopt that the burden of having a child with a speech issue is more than you expected?  Parents need to be sensitive to the feelings of others around the table, and maybe share certain details with moms in a social skills group waiting room, instead.  Some people love you very much, but can’t offer the support you need for topics about which they have no expertise, and haven’t had the experience.  If someone chose not to pursue an evaluation for child whose behaviors are similar to your child’s, last year or in 1984, you may get a negative reaction for which you were not prepared.

Finally, don’t underestimate the power of unconditional love.  If your 90-year auntie old sees your cherub as perfect in every way, maybe it makes more sense for both of them, your child and her, to allow your meltdown-y, only eating toast-y, can’t write her name-y 3rd grader to be a princess in the eyes of a person she sees 3 times a year.

Handling Halloween

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Halloween seems like a holiday designed for kids, but for kids with dietary issues, sensory challenges, anxiety, or impulsivity, parents have their work cut out for them.

Much has been posted this month about Halloween Horror stories.  My favorite was from a mom who glared as other mom’s sipped cocktails from the curb, since she knew her kid would have never made it to the doorstep fully clothed is she didn’t use every trick she had (scripts, prompts, hand over hand assistance) to get her daughter to the front door.

A few things to consider, aside from the “bring a flashlight” and “only go to homes you know,” rules, which seem to be just for first timers, really. Thanks for the coloring book, though, Safety Pup.

  • If your child has a moderate to severe allergy to peanuts, or a sensitivity to gluten, think about bring a Ziploc bag along for foods that are red flags for you.  For people who hand out candy kids once a year, requesting a “gluten-free alternative” to their treat may get YOU egged and T.P.-ed.  If you take the treat in question, seal it in an air tight bag, and say thank you, you can negotiate with a child later which foods are safe and which are not.  All kids are supposed to check candy at home. You are just looking for allergens or wheat, in addition to suspicious packages.
  • On the flip side, if you are buying candy and your children are sensitive to these things, consider looking for those in the “sweet, gummy, sour” category.  Not only are they less likely to be made with nuts, flour or milk, but they are less likely to have been rolling around in a large back on the supermarket shelf for two months with foods that are.  Some gluten-free candies to consider are Jelly Bellies, Peeps, Hershey’s Kisses, and Squirrel Nut Zippers (also a good band.)
  • If you have light traffic in your neighborhood, and know most of the kids who may come to the door, think about sharing gift bags with items like a gift card for an ice cream cone at a local shop, toys similar to what you’d find in a goodie bag, or a comic book.
  • If your traffic is unpredictable, think about packaging foods that you know your children would like in their lunches, like pretzels in Halloween-themed packages, with small tokens or stickers ahead of time.  Leftovers can be consumed later.
  • Talk about real etiquette in as simple and short a presentation as possible.   While your child is wearing a costume, they are still kind of performing a role-the cute kid on the block keeping the Halloween machine going.  People may say, “Who are you?” “What are you supposed to be?” or “I really like your costume.”  Appropriate comebacks usually include “thank you,” or “I am a witch.” If your child has trouble with social cues, remind them that this is 30-second visit, like the postal worker, not a play date.  It is not OK to talk about what you see in people’s houses, tell the whole story of where you got the costume, or lament the itchiness.  If you are dressed as half of a duo, expect someone to ask where the other one is.  ”That’s funny,” is sometimes a more appropriate response than, “my mom wouldn’t dress up as Robin,” or “This is the one from the prequel, and if you remember it correctly…<slam door>.”
  • Similarly, people may also give candy by presenting a bowl filled with choices, dropping candy in a bag, or leaving something on the porch.  It is almost never appropriate to take more than two of anything, even if people say, “take as much as you want.”  If they wanted you to have all of their candy, they would pour it all into your bag.
  • Not all houses have doorbells, so sometimes you have to knock.  Sometimes you knock, and you know the person is home, but they do not come to the door.  A good explanation most kids understand is “maybe they are in the bathtub,” and then you leave.  Kids understand privacy, even if they haven’t mastered it themselves.
  • Drive by houses and talk about where you will probably trick-or-treat.  Point out decorations and pumpkins, and notice places that are not playing along.  If you have a limit, like 15 houses, or 45 minutes, talk about that ahead of time.  If a house is dark, they are probably saying they don’t have any candy.
  • If you plan to go visit friends in your costumes, or visit a shopping center with a Halloween fair instead of doing whatever  the kids are school plan to do, discuss that in advance. People celebrate holidays a number of ways, and work schedules, temperaments, and health issues may preclude your child from old-school Halloween experience, but there are now more choices on ways to enjoy it.  Embrace your family’s plans, but talk about them in advance, so the children know what to expect.
  • If you have a little professor, or someone whose anxiety subsides when they know how things work, talk about the history of Halloween.  Stress that lots of the fun, and even spooky things, are based on beliefs that were once widely held, or were precious to another culture which came with them to the United States.  Visit places where decorations are sold and look at the zombie parts made of rubber, push the buttons on the toys that play spooky music, and practice surprising one another.  That way, when they encounter them, you can remind them that you don’t need to come home, it is just something a person made, to be spooky.  This may take the fun out of the event, or it could save the event, depending on the child, who you know best.
  • If it isn’t fun, don’t do it.  After years, and lots of dollars, we decided to forgo a popular local event people buy tickets for in April.  Lots of walking.  Frequent crying.  ”Healthy snacks” we often have to throw away.  Educational presentations at booths that seem to be candy stops, but have learning snuck in.  As a teacher, I love the way this one is designed. As a mom, I want my $100 back.
  • Have your own party.  Make candy, spooky stuff, socialization, or parades as much or as little of the day you like.  Since it is your house, feel free to write “No scary masks, please” or “We’ll provide the snacks, so just bring yourself,” or “Our house is a peanut-free zone, but feel free to bring some juice or cupcakes to share.”  If you put a kid in a moon bounce, it is not likely that they will complain about what they didn’t do that day.
  • Pumpkins are wonderful, but sticky and smooshy scoop out with your hands.  This is particularly challenging for a child with tactile defensiveness or sensitivity.  Talk about the textures before asking children to jump in, or put some “pumpkin guts” in a bowl and let them examine them with all of their senses.  You can always decorate a pumpkin with Mr. Potato Head parts, markers, glow in the dark stickers.  You can even wear gloves while carving pumpkins, use less-smelly/dangerous battery powered lights instead of candles, or focus on the process of decaying instead of on the Jack-O-Lantern part.

Parent Teacher Conference Questions

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As we approach the halfway mark in the first quarter, the time of “getting to know you” transitions into “now that I know you…” and the outcome can trigger a bit of anxiety.

While the teachers will have some agenda items or talking points, here are some things to keep in mind:

  1. You probably have about 20 minutes.  Please be on time, or you will either be cut short or eat into the next family’s time.  Don’t be surprised if you miss your meeting and are asked to reschedule on another day, or check in another way.
  2. During the week the parking lots may hold 40 of the teacher cars, and 10 cars driven by parents because so many students come by bus or on foot. If you are driving to school, expect the same 40 teacher cars and ten times as many cars driven by parents. Do the math. You may have to park around the corner.  If two parents are coming, do they need to come in two cars? #thingsthatmakeyoulate
  3. Listen to what the teacher wants to say first, but if you have a few big concerns, it is fine to say, “I hope we can also talk about (snack time, bullies, homework) at some point,” early in the discussion.  That way, the teacher can fold your concerns into the information that is shared.
  4. Expect feedback on long term plans for the year, such as field trips, tests, and projects.
  5. You may hear some information on assessments that happened at the beginning of the year which determine which reading groups your child will be in, or why curriculum will be adapted.
  6. Ask the teacher what you can do to reinforce skills being addressed in class.
  7. If the teacher asks if the child has any chores at home, what kind of routines you have in place, or what the child likes to do at home, they may be trying to figure out how to make the child comfortable at school. As a parent, this could feel like a judgement, but it is really research. You may ask for ideas on what is appropriate amount of responsibility to give children that age.  For example, a two-year old can water plants, or put a dish in a the sink, but it may not occur to a parent to ask them to try.
  8. If you have concerns about special needs, ask a question two ways. First “How is my child doing compared to typically developing children,” and then “Is my child making progress, compared to (a previous discussion.)” If this is the first meeting, you can say something like, “At the end of last year, George was working on cutting on a line with scissors, and almost had it down if the paper was thick. How is he doing with these kinds of skills now?”
  9. Ask the teacher, or listen to the teacher as they explain, what kinds of strategies or approaches they use to address the needs of children with different learning styles or “learning differences”.
  10. If your teacher mentions a lot of delays or concerns, but does not suggest a referral for special education evaluations, you may want to broach the subject and say, “Do you think we should talk to a specialist to get more information about where she is?” Be sure to talk about what kind of information you need.  Is the question about coping skills? Are you trying to address fine motor skills (drawing, writing with a pencil)? Listen for words like unique, difference, energetic, off-task, perfectionistic, wiggly, floppy, socialization, inflexible, or struggling.  It is possible that the teacher is letting you know that they are addressing the weaknesses in class, but they want you to know they are monitoring it.  They may be asking your for support.  Don’t be afraid to ask.

Please disclose to the teacher any changes or stress in the home that could impact the child’s achievement or behavior.  This could be as simple as “we just got bunk beds, so it is taking a while for the kids to settle down at night.” Stress or change does not always mean what adults see as stress, like a change in income.  If the child had to cancel a birthday party or quit an activity that was an outlet for them-this is stressful.  A pregnancy, a change in the travel schedule of either parent, a different babysitter, or even a dramatic change in appetite might be information that could help the teacher understand your child’s behavior.  In the interest of time, be sure to phrase concerns in such a way that you aren’t gossiping about yourself, but you say something like, “I just wanted to let you know that Caitlin has been talking more about kissing lately.  I think she’s getting used to the idea that her dad is getting remarried.  She seems really excited about being a flower girl.”  If your child is taking medication, please let the teacher and school nurse know what it is, when they take it, and what side effects there could be.  Remember that a teacher can’t, and shouldn’t try to, prescribe medication.  They may ask you to discuss a concern you have with a family physician.

If you need to continue the conversation at another time, that is fine.  You can ask to come by in a few weeks, or you may create a plan where you check in by phone, or over email weekly, for while. If there is a behavior you are targeting, like remembering to bring in homework, there could be a planner or notebook that goes back and forth to school to keep lines of communication open.  Think of your conference as the beginning of an on-going conversation.

Finally, don’t forget to thank the person who is with your child 7 hours a day!