Thursday, March 25, 2010

Time to Rest

My children have been enjoying picking these yellow wildflowers in our backyard. I guess technically they are weeds (yellow woodsorrel, oxalis) but one person's weed is another person's, "Look, Mommy I picked these for you..." I think they are quite a cheery little flower, but I noticed in the evening they close up. I was amazed that they do this even after being picked, mangled by little hands and shoved in the handiest glass of water, and for several days in a row. At first I thought they had just wilted, but the next day, they were cheery and bright again.

I have a few things to learn from these flowers, and this seems like as good a time as any to take my lesson. March 30 will mark one year that I've been plugging away on this blog. Posting almost without fail (hospital stays don't count, right?) every third day, amazingly continuing to come up with content, begging for readership, learning the social media frenzy, and in general having a wonderful time of it.
I must admit I'm zapped. Time to curl up and rest a little...sure to reappear just as bright and cheery when morning returns. Don't worry, oxalis is a real pain in the toosh to get rid of I hear, so I'll be back...hopefully right after Easter. Call it a blogcation in honor of my blogversary. See you in the morning!

Monday, March 22, 2010

Co-regulation...My Supports

If you read regularly, which I hope you do, you will recall that my last "practical tips" post was more of an airing the laundry post in which I began to try to understand my lack of calm demeanor leading up to dinner time. I had started by identifying my triggers:
    • Being interrupted mid-task.
    • Having to re-do it.
    • Prolonged noise.
    • Misdirected Expectations.
That was a Monday, of course. Tuesday, I will admit was no was in fact worse. Wednesday I went to work. I began to realize that I should approach this in the same manner that I would address any behavioral problem with my daughter, except the techniques would be applied to myself and my environment. Here are the most relevant ideas:

Effective praise: For me this means telling other people about my success, which I'm doing here and have also shared at a couple of other parent meetings. If I've learned something that I think can be helpful I love sharing it with other parents. Check.

Stay calm: A big chunk of this is devoted toward realizing that if I'm not successful the first time around (ahem...Tuesday) I can keep trying (Wednesday!). I have learned that eventually I'll figure something out and it will be fine, and I just have to remind myself of that often. And take deep breaths. Lots.

Rules that work: New rules for Mommy - no computer time from 4p.m. until kids are in bed. That is harder than it sounds. It's so tempting to run into the office just to check e-mail really quick, but that is exactly the time when I need MOST to be paying attention to where the kids are at physically, emotionally, and socially. Also - treat dinner time the way I do when we have company. If it can be done ahead of time, do it, and make every effort to have it to the table on time (still working the bugs out on this...)
New rules for Kids - when Mommy's making dinner we need to be happy and quiet. When I first explained this to the kids (Wednesday!) their response was amazing. My oldest daughter in particular was like, " mean that's not a good time to run around and be noisy??" Lightbulb moment for really is good to explain your expectations, even if they seem obvious.

Physical supports:
A little carbo-loading never hurt anyone. The kids get a snack mid-afternoon to hopefully ward off pre-dinner hungry grumpies. Mommy should get a snack, too. I'm trying to be healthy about this. Usually I'm eating a bit of cheese if I'm feeling a lack of protein, and a handful of whole-grain plain jane tortilla chips (so I won't eat a whole bag full!) It really helps keep my mood more even.
Enter the busy box!

Modified idea from two different sources. I had recently bought each child a new pair of shoes. I took their respective shoe boxes and personalized them with glitter glue and construction paper. You wouldn't have to get this fancy. I just thought it would make it more fun and I kind of like this sort of thing. Inside each child's box I placed items that I thought would be entertaining, but quiet. Mostly toys that had drifted to the bottom of the toy box. There is no food allowed in these (right before dinner!). If I put something particularly attractive to my kids (like super balls) then each child gets one to avoid fist fights. On the other hand each had something that they individually like: cars for the boy, stickers for oldest daughter, etc. When I showed them to the kids I explained that these are only for when Mommy's making dinner, that they are to help us be quiet and happy, and that we would clean them up and put them away before dinner (still working the bugs out...). Results:

  • Wednesday: worked like a charm
  • Thursday: still amazingly good
  • Friday: I was out at a meeting, but my husband used them and was duly impressed
  • Saturday: My husband and I had a date night and the couple who watched our kids said they are definitely copying this idea...

You get the picture. I do not use these every night. Sometimes Mommy's rule #2 and afternoon T.V. time are all I need to help get dinner on the table in a peaceable fashion. I have traded a few toys in/out to keep it fresh and more interesting. The twins are still totally into these. The oldest sometimes doesn't want hers, but will still find something quiet to do while the babies enjoy theirs, and THAT is the whole point. She has learned what I expect and is finding ways to meet the expectation either within or outside of her busy box.

Dinner time has become much more enjoyable in our home to figure out the housework and laundry.

Thrilled to be participating again in the Moms' 30-Minute Blog Challenge.

Credit where it is due: I learned about these and other techniques I am currently using with my daughter from two wonderful people, Clarissa Montanaro and Robin Hauge. Please contact them at clarissamontanaro-AT-gmail-DOT-com for more information.

Friday, March 19, 2010

Seclusion Rooms and the Like

I found this opinion piece in my google reader feed. Ill-equipped school staff are handling "disruptive" students by placing them (sometimes forcibly) into small, enclosed, quiet rooms for some period of time. Other programs use restraints inappropriately. One problem, as I see it, with using punitive discipline with special needs students is it is often applied without a clear understanding of what leads up to the "mis"-behavior (antecedent), and therefore does not address what the student's behavior is trying to achieve.

For example, Johnny taps his pencil loudly on his desk during a work time when the students are supposed to be doing a quiet writing exercise. He does not respond to the teacher's reminders to be quiet. Eventually the teacher makes him stand in the back of the room because he is tapping louder and bothering other students. The next day he does the same thing. The pattern continues and soon Johnny is not finishing any of his writing projects. Johnny has learned that to get out of sitting quietly and writing he just needs to tap his pencil loud enough to irritate the teacher. The teacher is giving a consistent response, and one that some children would respond to, but for Johnny it reinforces his negative behavior by helping him avoid an undesirable activity. Only a person trained in behavioral analysis should suggest appropriate responses to negative behaviors of students with special needs. My guess is Johnny should still have to do his writing, even if he does it in the back of the room where he doesn't disturb other students.

Beyond the counter-productive misuse of punitive measures, a U.S. Government Accountability Office study found that in some cases these methods have caused physical harm to students including death. Students with special needs are disproportionately subject to such aversive treatment because school staff are inadequately trained to respond to their behavioral challenges in appropriate ways.

Recently a good friend traveled to Washington D.C. with an advocacy group to support, among other measures, the Restraint and Seclusion Act (House of Representatives Bill 4247, Senate Bill 2860). This bill has now passed in the House of Representatives and appears to be in committee in the Senate. Keep your eye on this as it is important for the safety and emotional well-being of many children with special needs.

Tuesday, March 16, 2010

Angels Part 3 Jesus is no Angel

This is the third of eight posts based on the Bible Study Guide "Angels" by Douglas Connelly, A LifeGuide Bible Study. Today's passage is Hebrews 1, which quotes several passages from the Old Testament (Psalm 2:7, II Samuel 7:13-14, Psalm 104:4, Psalm 45:6-7, Psalm 102:25-27, and Psalm 110:1). It's interesting to me that with little salutation or introduction the writer of Hebrews jumps into a heated theological argument of the day. There were some believers at the time this letter was written who were contemplating reverting to Judaism or merging Christian beliefs with a Jewish sect. In doing so these believers would be downgrading Jesus from the long awaited Messiah to the equivalent of an angel, a rabbi, a prophet, or a priest. The author of Hebrews (whose identity is still the subject of scholarly debate) draws on Jewish scriptures, a source his audience would accept as an authority, to prove Jesus' supremacy to all of these categories. Many of the passages he quotes are foreshadowing promises made to King David, the central figure of Old Testament history, where God promises to establish David's line as King over Israel for all time. This is commonly seen as a promise that the Messiah would be of Davidic descent because in truth David's human Kingly line dwindles circa 586 B.C. Jesus fulfills this and many other prophecies as both of his human parents are descended from David (Mary from David's son Solomon, Joseph from David's son Nathan, see Matthew 1:1-16, and Luke 3:23-31ff).

It is interesting to note that similar debates, fueled in part by historical fictional novels of all things, rage on today. Just who is this Jesus, anyway? Many would like to skate by on the answer that he is a good man, a good teacher even, but good teachers do not lie about their credentials. Jesus, on several occasions recorded in the New Testament, claims to be the Son of God. On at least one occasion (Luke 4:14-30) people were so enraged by his claims that they wanted to throw him down a cliff. C.S. Lewis has a rather famous argument that one must choose whether they will call Jesus a liar, a crazy man, or the Son of God as he claimed to be.

The author of Hebrews begins by assuring us that Jesus is no angel. One particular contrast is the angel imagery of Psalm 104:4:
"He makes his angels winds,
his servants flames of fire." (NIV as quoted in Hebrews 1:7)

with the Messianic imagery of Psalm 45:6-7:
"Your throne, O God, will last for ever and ever,
and righteousness will be the scepter of your kingdom.
You have loved righteousness and hated wickedness;
therefore God, your God, has set you above your companions
by anointing you with the oil of joy." (NIV as quoted in Hebrews 1:8-9)

Angels are here depicted as powerful, but rather "temporary" messengers under God's command. Meanwhile, the Messiah (Jesus) is equivalent to God, eternal, and reigning with righteousness and joy. We must be careful to remember that as amazing and wonderful as angels are, they are not God, nor are they God's Son. Our heart's desire should be to serve and worship Him alongside His messengers of wind and fire.

Saturday, March 13, 2010

Number One Advocacy Need

It is IEP season in these parts. One friend already had hers and shared some concerns. Our meeting happens this week. Others are coming. For those unfamiliar with the term, an IEP is an Individual Education Plan. After a child has been assessed by professionals working with the school district they reside in and found to have educational needs that cannot be met in a general education environment, an IEP is put together by a team of professionals (general education teachers, speech therapists, occupational therapists - OT, psychologists, special education teachers, administrators) and the child's parents/guardians. The IEP includes specific goals that everyone will work together to help the child make progress on. The IEP also states the amount of time extra services (speech, OT, social supports) will be provided on a weekly basis, and how much time the child will spend in a general education classroom. IEP is also used to refer to meetings of this team of people. At least one IEP meeting happens each year, although anyone on the team is allowed to request meetings at other times. Last Fall we had IEP meetings every other week on average for about two months. Hairy, yes, but worth it in the results we've had with our daughter's program.

Long introduction to my topic for this advocacy post. In my opinion there are two essential advocacy roles for being a special needs parent: awareness and acceptance in the community, and appropriate education. Currently 30% of my daughter's waking hours are spent at school. That percentage is only going to increase in the days to come. Since many peer relationships develop there, though they may extend beyond the school walls, that 30% overlaps a great deal with her "community." In other words, the more positive her school environment is, the easier it is to garner acceptance in the community at large. Thus our main focus to date has been advocating at our school. We have learned "on the job". I look back on our earliest IEP meetings when I simply signed the forms and went on with my day with a mixture of amusement and chagrin. Now I feel like an essential part of the IEP team, one who helps the various professionals understand how their various strategies and programs need to be tailored to our daughter's specific needs in order to be most effective. I must also say that we are blessed to live in a great school district with excellent staff and professionals. I am aware, however, of other districts where parents have no support and professionals are downright negligent to their duties and their students.

I keep wondering if the current system is really enough, even in the best of situations. Blog posts like this one make it clear it is not enough. Parents are concerned that their children are being side-lined because teachers can't see beyond their wheelchair to their potential. Parents feel painted into a corner of homeschooling because they are the only ones who will give their child the time and attention they need to communicate their thoughts. Other children languish because no one will try even the simplest of tools to connect with them.

For some time now I've been dreaming of a school where every kid is met on their own terms. Every person has abilities, gifts, strengths, things they excel at. Every person also has challenges; some are more profound than others. Imagine a place where every child can expand their abilities and strengths and be supported in their challenges, and even taught how to address their challenges through their strengths. Imagine them all helping each other to excel, succeed, thrive, and enjoy as they learn, explore, and think. Doesn't it sound lovely? How does one even begin to build such a place? This I do not know. I think one begins with parents like those who commented on Bird on the Street, and then one appeals to a wider community of parents with children of all abilities, and finally one invites experts, professionals, and passionate educators who can catch the vision.

That's a big dream to drop in your lap and walk away, but I'm not sure where else to go with it at this point. If you have a similar dream, or can catch the vision I invite you to comment here. Meanwhile I ask you to plug along where you are...advocating as well as you know how...for every child to have the opportunity to reach their full potential.

Wednesday, March 10, 2010

Book Review - Anything but Typical

Anything But Typical is a middle-grade fictional novel by Nora Raleigh Baskin. It takes us into the world of a high-functioning autistic boy named Jason. As I first started reading I wondered if the book was biographical, but came to understand that Ms. Baskin just really did her research and, I think, has a good sense of what is going on in the world of a person affected by autism.

Jason has always been empowered by written words. In savant fashion he was able to spell before he was able to speak. He still struggles to express his thoughts and feelings verbally, but using a computer devises richly descriptive parables that communicate his deeper feelings. Jason writes his stories on-line and meets another writer by "chatting" about their respective works. The main dilemma of the plot arrives when Jason has the opportunity to meet his on-line friend in person and fears that his virtual persona can't be lived up to in reality.

The underlying theme of the book is one of the most innate of human needs: acceptance. Jason's need to accept his gifts and challenges as a package deal. Jason's parents' need to accept him and the way the rest of the world responds to him. Jason's friend's need to accept reality over virtual-ity.

Another review I read said that there were many humorous situations in the book. Maybe it is just my perspective as a parent of a special needs child, but I felt less humor and more anxious confusion in many of the situations as Ms. Baskin draws us into awkward moments where Jason knows what he should do, or what others want him to do but struggles to find the right path to get there. I don't want to give the impression that there is no humor, but for me the most humorous things were when the people surrounding Jason tried to help him but were misunderstanding his feelings and his intent. His parents set up a mock airplane seat when they misread his anxiety over meeting his friend as fear of traveling in a plane. They have him sit in the mock airplane for increasing lengths of time but have no idea that his fear is probably much more common-place: the fear of rejection.

I think this is an excellent read for anyone who wants to understand what the inner world of at least some autistic individuals may be like, and how similar their needs are to everyone, really.

Sunday, March 7, 2010

Sunday Digest 15

1) In doing some research for some friends I found out that the Special Education Rights and Responsibilities (2005) publication of Protection and Advocacy, Inc. Is available on-line here. Unfortunately there isn't a newer version, and a lot of important changes happened in 2005. However, the first chapter, which gives an overview of special education law, has been annotated to reflect those changes. This resource puts parental rights and responsibilities into plain English, and presents the material in a question/answer format that I find very helpful when I'm looking for one specific bit of information.

2) Another resource for IEP meetings...another reason to consider getting an iPhone? This is an iPhone app that is supposed to help both parents and teachers store information and make sure that a student's IEP meets federal requirements. I do not own an iPhone, so I can't say whether this is useful or not. It sounds good. If you have an iPhone and want to try it out and let me know...

3) This video is a good explanation of Fragile X Syndrome. Fragile X is the only KNOWN cause of autism. A group of parents and professionals caring for individuals affected by Fragile X were in Washington, D.C. this past week advocating for all families with special needs. Because of the link between Fragile X and autism, any basic research that advances diagnosis or treatment of Fragile X could potentially yield progress in the same direction for autism. Learn more from the video or from

4) I recently saw two articles about Kristi Yamaguchi in different magazines. Still caught up in the Olympic spirit (I still have approximately 35 hours recorded on our DVR to watch) I read both articles with increased respect for this icon of figure skating. Now that she has retired from competitive skating she has started a foundation called Always Dream. At least one focus of the organization is to encourage and support children with special needs. They opened an accessible playground in Fremont, CA in January 2010. After reading the first article I was curious about how Ms. Yamaguchi developed this passion. The second article explained that when she was born Ms. Yamaguchi had club feet. Several operations and years of therapy later you'd never know it from watching her skate!

5) I am fascinated by Temple Grandin. There was recently a documentary on HBO about her life. In case you are not familiar, she was diagnosed with autism at age 2.5 years (1950s era) and is now a professor of animal science. She has written a couple of books about her experiences. I reviewed her book Emergence several months ago. Today on twitter I found this video of Dr. Grandin lecturing on autism. It is over an hour long. I haven't watched the whole thing, but the part I have watched so far has been very informative, interesting, and entertaining even! I think we have a lot to learn from her...

Thursday, March 4, 2010

Wants and Needs

Almost every day my daughter sees something (at school, at a friend's house, wherever...) that she desperately wants and must have immediately, and, "I want to go to the store and buy it right now..." It is a rare day that I:
  • Can actually get to the store that day.
  • Agree with her that the item is needed immediately, if at all.
  • Gratify her desires with the object of her affection.
It is an even more rare day that she accepts all of my logical reasoning for going home and puttering around the house rather than driving post haste to the mall with equanimity and grace. Rather she restates her desires in increasingly whiny tones and with much passion. I have learned to repeat, "No, not this time" then proceed to make empathetic sighs and say, "I know, I know..." and then to say nothing at all. Otherwise it is the type of conversation that escalates into non-productivity.

It is a hard lesson for all of us that we simply can't have everything that we think we want RIGHT NOW. I've noticed a few alternative outcomes that can be quite satisfactory, though.

Be content with what you already have. Last week the big deal was that she needed a new backpack. The pink Hello Kitty bag she had lovingly selected and carried proudly every other day to Kindergarten just would not do anymore. It was too heavy, the zippers were not strong enough, and we had to go to the store right now and get a new one. I explained that most backpacks are heavy, and that the zippers were just fine if she is careful, but nothing would do. After a few attempts to decode what it was all about she said she wanted to use her suitcase instead. She has a little roll-about suitcase that one of her aunts personalized and I realized that she had seen someone with a backpack that rolls like that suitcase. I recalled that we had a backpack in that style that wasn't really being used. At first she was reluctant to accept this solution, but the next school day she happily packed up her "new" purple rolling backpack with all of her gear. One trip to the store averted.

Wait a while. A couple of weeks ago the must have of the day was a toy plastic microphone that sort of "amplifies" your voice by adding reverb. She wanted to go immediately to pick one out, but there was no way I could have fit that trip into the day's schedule. She had some birthday money and I knew we could get one for just a couple of dollars, so it wasn't a financial issue as much as a logistical problem. I had already planned a trip to that store for the next day, but we would have to wait until then. And wait she did. To be honest there was a part of me that hoped she would lose interest, but having told her we would go to the store the next day, the microphone became her fixation. The next day at the end of every activity her question was, "Are we going now, Mom?" I'm not sure who wanted the shopping trip to happen more. Here's hoping the delayed gratification will keep it out of the junk bin a little longer.

Consider the economics. A few days after the microphone purchase we were making our weekly grocery run and my daughter expressed her desire to buy a yellow bell pepper rather than the red one I had already picked out and placed in our basket. Yellow, you see, is her favorite color. When I explained that the yellow pepper cost more money than the red pepper it was handy to have the microphone for reference. I asked her if she would rather have a yellow pepper or her microphone the decision became more concrete and she conceded that a red pepper would be just fine this time.

Today the coveted object is a seat cushion. Arguably this is something she needs, especially while sitting at the dinner table. It could just be the latest "cool thing" she's seen at school, so we may have to work through a few more sessions of, "Not this I know....." before I find out if this would be a wise purchase or not.

How do you help your children learn the difference between wants and needs? Do tell...

Monday, March 1, 2010

Co-regulation...My Piece

I had an entirely different post planned for tonight, but life invaded and made this post more relevant to working through some issues for myself, which I hope will also be helpful for others. Over the last year we have had the privilege of meeting some wonderful people who have helped us immensely in developing specific tools that support good behavior for our kids. There are many facets, but by far the most challenging to me is the idea of co-regulation. This essentially is keeping your cool so that your child can more easily maintain an appropriate level of arousal. I have improved (though not mastered) this when I am one on one with my daughter, but am more challenged in the evening (no surprise) when our whole family is together and the pressure of my to do list from the day is at its peak. Everyone is tired, but the children seem to get more frenetic in their activity, and whatever capacity or patience I've had earlier in the day is expended. The situation is not aided by the long business hours demanded by my husband's work, and the occasional difference in priorities that result. In sum, not much of this is in my control, but one thing I can do is identify my triggers and find appropriate strategies to keep my cool: the very essence of self-regulation. I feel quite strongly that I need a better grasp on my own system before I can hope to be more helpful to my daughter.

Here are some triggers I have identified so far:

Being interrupted mid-task. No one really likes to be interrupted, and when the children are awake I almost never move from beginning to end of even a short project without some sort of question, request, demand, intervention or mop-up duty.

Having to re-do it. It's bad enough that a mom's work is never done, and that whatever cleaning or straightening I do today I'll likely need to do it again tomorrow, but when it doesn't even last five minutes my buttons are definitely pushed.

Prolonged noise. I think I'm actually developing an allergy to the hood ventilation over our stove. The whining fan seems to evoke similar noises from the children and before long my frayed nerves just can't take it any more.

Misdirected Expectations. If I know in advance I'm on my own with the kids, even all day, my capacity to cope with whatever they dish out rises to the occasion. When I think I'm off the hook after dinner (or at least not flying solo) the last hour or so of the day becomes unbearable if I end up on mommy duty, even if I logically understand the reasons for the change in plans.

None of this is particularly pretty or comfortable to write here, but it seems to be the crux of the issue. In the next few weeks I'm going to be looking for my strategies to talk myself down from these ledges of dis-regulation. I would be more than happy to receive your input via comments below. Feel free to share your own triggers or if you have similar triggers what strategies you use to stay calm.

This post is participating in the Mom's 30-Minute Blog Challenge.


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