Where are the Special Needs Parents?

 

I did the unthinkable during our district’s conference week. I missed my daughters’ conferences.


How in the world did I manage that? After all, isn’t their education a priority to me?

Absolutely, I value their learning immensely. If learning weren’t significantly important to me, would I have gone into teaching?

My problem? Childcare.

In high school, students stay home while their parents attend conferences. After all, what 15-year-old can’t stay home alone?

Mine, that’s who.

It’s times like this that the practical issues of caring for a child with significant disabilities remind me just how different the lives of special needs families can be. I thought today might be a good one to share with teachers and school administrators why your special needs families might participate less in school activities than you wish.

In the days-before-disability, I was part of a staff discussion at our elementary school on why special needs parents are so noticeably absent from Parent-Teacher Association (PTA) meetings. There was speculation among teachers; now I know the reasons why. Let me offer a little insider perspective.

1) Childcare is a real issue, especially as our children get older and bigger. If conferences or PTA meetings happen during hours our caregivers are not normally scheduled, we often cannot get help that frees us to attend.

2) Parents need time to catch up when our kids are gone. It’s tough for special needs moms to volunteer at school during the day. We need that time for doing tasks many mothers do when their children are home. As a wonderful mother of a busy, busy (busy!!!) student with autism in my class once said so eloquently, “When he’s home, he’s all I can do.”

3) Our kids often can’t come with us. Routines are hallowed to some kids—and inflexible. Only those living with our children can understand the cost of disrupting these routines and that we may have to pay dearly for days to come. Is the PTA fundraising event worth it to our family?

Our school’s PTA generously provided childcare in the room next door to the room where parents met. However, the sitters did not have the training necessary for the special health and behavior challenges that come with disabilities. The “provided childcare” couldn’t accommodate their needs.

4) Parents don’t have energy for extras. Let’s face it, getting through the day with all the lifting, chasing, handling explosive behaviors, loads of extra laundry, driving to therapies, cooking special diets, feeding, advocating, telephoning, toileting, and such...means that we may not have energy to go to a PTA meeting in the evening.

5) Parents may have different priorities from the school. Few special needs parents would suggest that PTA is a bad thing. But some are fighting for some basic needs in life—a sense of normal for our family, for our children’s health, or even our children’s lives. In the grand scheme of thing, PTA may not be that big of a concern to us.



How can you help special needs families?

Find out what method of contact is easiest for these families. It may be email, a handwritten note, the phone, or it might be when the parent drops off or picks up their child. Families have specific reasons for finding one of these methods best to connect with you. ASK.

Try to be flexible with meeting times. Childcare is a major issue for many families. It isn’t like we can simply phone a neighbor or send our children home with a playmate while we attend a meeting after school. If you can offer multiple time slots, there may be one that actually works with our family’s schedule.

If flexibility isn’t an option, give us lots of lead time to plan for childcare...and a loving reminder when the meeting gets close. It can take weeks to arrange for a caregiver to come watch our children. Trust me on that one...I’m not being dramatic. And then, because our memories are so overfilled that we sometimes can’t remember to check our calendars, a polite reminder notice that the meeting is scheduled for the next day is helpful and appreciated.

Suspend judgment when parents don’t come to functions. It may have nothing to do with our commitment to our child’s learning or to your school. Our families deal with very real, practical issues that you may not be aware of.

Thank parents for participating. We may have made sacrifices to attend a school function. You never know. When you see us, let us know you appreciate our effort to come.



What would you add to this? Are there things you have done as a teacher to support families in their relationship with the school? Families, what would help you participate more easily with school?

Gratitude

I’ve been sneaking in quick peeks at blog posts this week, savoring all the wonderful reasons people are thankful. I love that about Thanksgiving time, that it causes us to reflect on our blessings.

I am awed and uplifted by parents who struggle daily with some tremendous challenges that their children’s disabilities bring. The ability of these brave parents to find joy and gratitude in their difficult situations is nothing short of inspiring—even to one who lives a similar life.

When I read their lists, I am moved to think of my own reasons to be grateful in the midst of challenge.

And that does my heart good!

I am surrounded, both in “real life” and cyber-wise, by families whose lots in life are ones I can’t imagine living. And yet these families can dig through their difficulties and find reasons to be grateful. Some of you read here, and I love what you share.

A person who can look past the medical issues, past the behaviors, past the limits...to see the beauty and courage and strength and gracious soul of their child...is surely one who has great wealth. No wonder you have thankful hearts!

As we in the United States come into this season of gratitude and appreciation, I encourage you to find the good in your situation. We who have food on our tables (however plain) or roofs over our heads (even if the gutters need repair) or families to laugh with together (warts and all)...we are truly blessed.

Now, I know it can be hard at times to even see our blessings, let alone feel grateful. I can fully empathize with families who are reeling from the unexpected shock of a painful diagnosis or a downturn in their child’s condition. I can relate to those momentary setbacks we all experience where reality serves as a magnifying glass through which we see the blemishes in our situation.

If you are having trouble finding your blessings, please, for the sake of your children, look for the little things to be thankful over. Your kids deserve to know that life can be good. They need to know that you are grateful for them.

Have a lovely Thanksgiving, and please give your children a hug and let them know how thankful you are that they are in your life!

Use Visual Timers to Ease Transitions

Have you ever struggled to get your child or students to move from one activity to another? I have!

Take bedtime...that idyllic ritual where small children willingly dress in their pajamas, brush their teeth, and hop into their bunks for a bedtime story. Hah! This is a lovely fantasy of parents-to-be that their children will destroy the moment they are born.

The reality goes a little more like this:

Child is playing with Legos. Mom says, “Time to put the blocks away and get your pajamas on.”

Child whines, protests, refuses to budge from the pile of blocks. Mom starts strategizing. “You have a point. I didn’t give you much warning. IN FIVE MINUTES you need to put the blocks away and dress for bed.” She sets a timer on the stove.

Child happily resumes playing with Legos.

Five minutes later, the timer sounds and mom announces it is time to put the blocks away. She is met with screams and stomping feet.

What went wrong? She tried a very fair strategy.

The problem is that children lose track of time when they are absorbed in an activity. They need a way to judge how much time is left, even if they aren’t proficient in math skills yet.

And that’s where visual timers can help.

Visual timers let kids see how much longer they have for the activity they are doing. Visual timers take away that element of surprise. Unexpected change causes some kids to feel they have no control over their environment and may result in tantrums and melt-downs.


In the event of an activity that a child doesn't like, the visual timer serves as a promise that the dreaded activity will eventually end. Really and for true!

Seeing how much time is left helps children adjust to the idea of change. They may not like that their favorite activity must end, but removing that feeling of suddenness helps them develop control over their response.

What makes a timer visual?

That timer built into the stove or a handheld digital or dial timer is not adequate for most children. It definitely lacks visual support for children with cognitive or sensory disabilities or those who are too young to have much math sense.

A visual timer makes time meaningful by letting children see time passing. Typically, a visual timer will represent time with a pie that gets smaller and smaller as it is used up.

Several excellent visual timers using this “disappearing pie” are available.
A "Time Timer"
Photo by Earthworm on Flickr Creative Commons

TimeTimers ($30-40 at TimeTimer.com or on Linda Hodgdon’s website; approximately $20-30 at Amazon.com) are the classic standard. These come in a variety of sizes appropriate for individual, group, or classroom use.

Wendy Homlish, a respected special educator, shared a source for another visual timer, the elegant Pie Timer for $14. This is good for use with individuals or small groups.

There’s even an app for that, an iTunes TimeTimer ($1.99) with the same visual interface as the physical TimeTimer.

Image from http://itunes.apple.com/us/app/time-timer/id332520417?mt=8
                                              
A great looking countdown timer for the Android includes the Activity Timer ($0.99)

Image from http://www.androidzoom.com/android_applications/productivity/activity-timer_hmet.html

Or the Visual Timer PRO which can count down an hour (the free version is limited to 3 minutes).

Screen shot from http://www.androidzoom.com/android_applications/education/visual-auditory-timer-pro_zawj.html

You can also install visual timers on your computer, whether to set limits to game play or to provide timer feedback.

I especially like the free Countdown Clock from Online-Stopwatch.com. It can be used online or downloaded to use whenever you like. It’s visually similar to TimeTimer and you can apply custom sound add-in to online version. If you want a desktop link to the download, you do have to create your own desktop icon.

The Countdown Clock can run in the corner or full screen

Several bar-style countdown timers might also be useful for older kids or adults.

iTunes offers an Autism Timer ($2.99), with disappearing bars that can change color as the time expires.
A couple timers count down in increments, which some of your kids may find helpful.

The Visual Countdown Timer ($2.99) works on the iPhone by erasing bars as time dwindles.

Focus Booster offers a free download of a bar timer for your computer. The moveable window floats on top of your work. Its timer bar lengthens as time passes, filling the blank window. It is elegant for adults to use and appropriate for an office. It's alarm is fairly soft, which may or may not be a good thing, as it is not currently adjustable.


Jim Luther has created a free incremental CountDown Timer for your computer.

Image from http://sites.google.com/site/jamjolu/Home/countdowntimer


While not providing as much graphic support at these others, Harmony Hollow's downloadable Cool Timer is a nice tool to use on the computer. It's free, has a customizable alarm sound and message banner, and is extremely easy to use. It's away to make sure kids (and adult audiences!) are in their seats when you are ready to start class, especially if you import a goofy sound as the alarm.

 Teachers of kids with autism have been using visual timers for awhile now and seeing excellent results during transitions. These timers can be extremely useful for many populations. If you haven't given them a try, why not do that this week and see if things go more smoothly. I'm betting they will!

Update:  Thanks to our reader Emma for sharing that the free Cool Timer by Harmony Hollow has been upgraded to include a visual countdown feature as well. I'm moving Emma's comment up to the body of the post here, since not everyone reads through the comments. I'm LOVING the upgraded Cool Timer and use it all the time (great for keeping my computer time from encroaching on the rest of my day!). I personally found it easier to download from the CNET site, so take your pick!


Two ways to run Cool Timer. You can
also set it to erase the image rather
than uncover.