September 2010


School of Parenting

Course: Sleep Management 101

“Sleep Baby Sleep” – Case Study #1: The Butler Family Corporation

The Butler Family Corporation is a medium sized group located in a fairly small community.  The corporation is headed by the co-CEOs, Mr and Mrs. Butler.  They have three young boys ranging in age from almost 2 to eight years old.  The company’s main job is to provide clothing, food, shelter, unconditional love and guidance to the three boys to help create new valuable members of society.

Sleep has been an issue for the Butler Corporation almost since its first member joined a little over eight years ago.  The first child, Gerry, was a terrible sleeper.  While originally thought to be caused by the use of cloth diapers (Mrs. Butler thought that using them made Gerry wake up every time he was wet), the main reason for the child’s sleep issues were that he liked being with someone when sleeping.  Gerry took his naps on or next to Mr. and Mrs. Butler until he was 20 months old, until Mrs. Butler finally developed a good nap time routine.  Night times were more difficult, and while Gerry started out in his crib at night eventually he made his way into Mr. and Mrs. Butler’s bed.  Mrs. Butler was quite ashamed of this behavior, since all her friends had their kids sleeping in their own beds.  She never talked about it with anyone outside of the corporate inner circle.  It wasn’t until Gerry was over 4 years old that he stayed in his bed all night long. He has been there ever since.

About that time, the next member of the corporation arrived.  Howie’s bedtime struggles were worse.  Howie was colicky and woke up every 45 minutes to nurse.  He would only sleep if touching someone, and even then was up all the time.  Nap times were worse – every nap was on someone’s lap and even those naps were usually cat naps.  The problems were compounded by the fact that Mrs. Butler was also trying to take care of Gerry’s needs, so Gerry ended up watching a lot of TV and playing on his own while Howie slept.  Howie’s sleep issues became such a problem that Mrs. Butler took him to see many experts, including Dr. Ferber’s sleep clinic at Children’s Hospital at age 2.  Howie (and Mrs. Butler) endured one overnight sleep study and one 24 hour EEG.  The results showed abnormal brain “blips” that were diagnosed by Dr. Ferber’s colleague as “rolandic benign epilepsy”.  Mrs. Butler was told to basically ignore this – there had been no evidence of seizures and if none were observed by the time Howie was 11 or 12 years old, then he had outgrown the diagnosis.  Mrs. Butler was sent home with instructions to leave Howie in his crib screaming, and if he threw up, she was to clean it up and leave him in there, basically telling her that the sleep problems were a result of poor parenting routines.  Mrs. Butler was beside herself with this, and after a few nights of Mr. Butler trying the technique, Howie was back in the bed with them.

Mrs. Butler began to look for other reasons why Howie wasn’t sleeping, including reflux or allergies.  Howie went through more testing to rule out anything physiological.  Mrs. Butler had also found out around this time that another member would be joining the corporation in nine months, and the search for answers became desperate.  Mr. and Mrs. Butler knew that Howie had to get out of their bed with another baby on the way.  Mrs. Butler spent several months of her pregnancy sleeping on the floor next to Howie’s mattress, as well as sleeping in Howie’s big boy bed with him.  Early Intervention had been called in at this point, and Howie had been given the diagnosis of Sensory Processing Disorder by their occupational therapist (and later at age 3 1/2 his autism spectrum diagnosis).  He started working with the OT on his sensory issues and that was leading to some success at the sleep level.

In the fall of 2008, the final member of the corporation arrived.  Lewis was a better sleeper from the start.  However, he still started out in the bed with Mrs. Butler to ease with feeding as she recovered from her third C-section and almost 3 years of sleep deprivation.  Determined not to make the same mistake a third time, Mr. Butler made it his mission to get Lewis to sleep in his crib as soon as possible, especially since Howie was still having several night wakings per night.  Mr. Butler successfully achieved his goal on Christmas Day 2009, and from that moment on Lewis napped and slept in his crib through the night.

There was a period of time when sleep was going quite well for the members of the corporation.  Gerry was continuing to sleep fine on his own.  Thanks to weighted blankets, melatonin and a better understanding of sensory issues, Howie was sleeping through the night in his own bed at least 75% of the week.  He still needed someone to lay next to him while falling asleep, but was usually able to stay there all night long.  Lewis would go to bed in his crib at the same time as everyone else, and would stay asleep until the morning.  Mr. Butler was finally getting some sleep.

Mrs. Butler on the other hand, was having trouble.  She would wake up every few hours waiting for the shoe to drop.  After over 4 years of not sleeping, she was having trouble training herself to sleep soundly again.  Every noise she heard on the monitor or from the boys’ rooms in the middle of the night sent her out of bed quickly, trying to manage the situation before the whole house woke up.  If Lewis cried a bit, she would run into his room and pop his pacifier back in.  If Howie moaned or shuffled in his bed while sleeping, she quickly fixed his covers and weighted blanket so he would settle back down again.  Mrs. Butler knew that the alternative might be hours of screaming and crying, causing everyone in the house to be awake.  She was willing to sacrifice her sleep to make sure everyone else was getting the rest they needed.

This has been an ongoing issue for Mrs. Butler and the whole Butler corporation.  Recently, things have changed back to old sleeping patterns.  Gerry, while sleeping through the night, is having a hard time falling asleep.  Howie’s night wakings have returned, and increasing the melatonin dosage has not helped.  And Lewis, previously the best sleeper in the house, is fighting naps and bedtime, and is up two or three times during the night.

The challenges for the Butler Corporation regarding sleep are many.  The lack of sleep causes irritability and quick-tempered behavior from everyone, but especially Mrs. Butler.  This is especially hard for her because she has never considered herself a “yeller”.  The Butler Corporation is at their wits end, and would do anything for one good night’s rest.

The Case Questions:  As special counsel to the Butler Corporation, please identify and evaluate one or two strategies that you think would help keep this company afloat.  Consider the solutions that they have already tried, and analyze where they might have chosen a different path.  Recommend a specific action plan to help them more efficiently manage sleep in their house.

And if you can’t do that, just let them know that this happens in your house too, and that they are not alone in their sleep misery.

______________________________________________________________________________________________________

Sleep, baby, sleep
Your father tends the sheep
Your mother shakes the dreamland tree
And from it fall sweet dreams for thee
Sleep, baby, sleep
Sleep, baby, sleep
” – Sleep Baby Sleep, A Lullaby

Tonight, more thank yous…

First, a huge thank you to all my family and friends who supported us today in our Walk for Autism Speaks.  Our family raised over three times our goal for donations, and our team raised almost six times more than our original goal.  Today, my family walked with about 20,000 others – all affected in someway by autism spectrum disorder.  Our team was comprised of all first time walkers.  For those of us with kids on the spectrum, this was our first time “going public”, so to speak, and certainly the first time asking our friends and family to support a cause like this.  I am so proud to have been walking side by side (or in some cases separated by a few thousand people) today with such amazing friends.

Speaking of that, I was extremely humbled to have had my cousin and my very good friend walk with us today.  Neither one of them have kids on the spectrum, but they were there to support us.  I am honored that they chose this event to come to with their husbands and kids and walk with us.  A huge thank you from me to them.

And now, more thank yous…

Over the past few months that I’ve been writing here, I’ve been blessed to have “met” some fantastic writers along the way.  I’m learning that one of the ways that we bloggers like to support each other is through “awards”, given to each other on our blogs to encourage others to go to our favorite sites.  I’ve been lucky enough to receive a few of these awards from some of my favorite sites: Training Happy Hearts, Floortime Lite Mama, Life in the House that Asperger Built, and I Should Have Named Him Calvin.  Yes, I’ve been saving them up, partly because I keeping forgetting about it, and partly because I couldn’t figure out how to put in a picture into my post.

Both problems solved tonight.

So idea behind the Versatile Blogger Award is to write seven things about yourself that others might not know, and then pass the award on to seven other bloggers (kind of a blogging chain letter but without the photocopying and postage stamps).  So here goes:

1.  I was a Geography major in college, but still have a terrible sense of direction.

2.  My husband and I met at work, and I fell in love when he helped me figure out the lyrics to “Only Want to Be With You” by Hootie and the Blowfish

3. My two favorite Broadway plays are “Fiddler on the Roof” and “Jesus Christ Superstar” and I can sing along with every song.

4. One of my biggest regrets in life was quitting piano lessons in 7th grade to play softball.

5.  I used to be a politician.  Now I just complain about them.

6.  The first concert I ever saw was “Huey Lewis and the News” in Lake Placid, NY.  A huge thank you to my cousins who went with me because my parents wouldn’t let me go without them.

7. I have yet to get through an episode of NBC’s “Parenthood” without getting weepy.

Now the next step is to list seven of my favorite blogs so others can check them out.  Now, two of my favorites “Welcome to the Madhouse” and “Spectrummy Mummy” have already received the award, so I can’t put them on my list.

To honor of the 30th Anniversary of the SPD Foundation, the first set of blogs are all my friends from my SPD blogger network (in no particular order):

Pancakes Gone Awry

Special Kid, Special Parent

Our Life With SPD

Brotherly Love

These next three are ones I read every time they post because they are interesting, provocative, and a great way to pass the few quiet minutes I have to myself:

Asperger Ninja

Partly Sunny, Chance of Rain

Autism is Not a Four Letter Word

Of course, I have a list a mile wide and I’ve added some blog sites to the giant list of favorites, including my new friends Cheryl, Dawn and Graeme at The HMEA Blog, the new blog site for our local autism resource center.

So thank you for letting me say thank you here, both to my friends and family for the walk today and my cyber friends and family for all that you’ve given to me.

You’ve been so kind and generous, I don’t know how you keep on giving
For your kindness I’m in debt to you
For your selflessness, my admiration
For everything you’ve done, you know I’m bound, I’m bound to
thank you for it….
” – Kind and Generous by Natalie Merchant

So first of all, a big thank you.

I wrote one line last week about my youngest having his second early intervention appointment.  One line. And I got the most amazing, most overwhelming support from my friends – both in person and in cyberspace.

I got the phone calls I expected that day, the ones from my mom and from my husband.  But what I didn’t expect were the e-mails and comments and tweets (yes, I said tweets…sigh) from my friends here in town and across the globe.  I can’t express how much that meant to me.  It was so different from when I went through it with Howie and I knew only one person who would understand.  To have so many others check in with me…I’m speechless.  Thank you.

So, speaking of speechless…

It’s taken me a week to really be able to process our visit with the speech therapist last week.  It was the same woman who evaluated Lewis in May, so she was very familiar with our situation.  We were able to skip over most of the Michigan Early Intervention Developmental Profile and go right to the speech/language portion.  She went through the test, trying to get him to use his words to ask for the puzzle pieces, the blocks, the animals…and got nothing.  She tried to get him to repeat her words so he’d start talking.  She tested him a bit, forcing him to ask for something before giving it to him.  Nothing.

So since he wouldn’t talk, the therapist and I did instead.  She asked me how many words I thought he had (about 20).  She asked me how many of those words someone else could understand (about 10).  And she asked me how many of those words that someone else could understand were also spontaneous.

Spontaneous?

Meaning how many did he say on his own without prompting, without repeating.

About five.  Sigh.

The therapist wrote down a bunch of notes and asked Lewis questions.  He could follow two or three step directions but wouldn’t say anything to her.  I figured I needed to chime in here.  He has words, I told her.  I said I felt like I was walking a fine line telling her things, but I wanted to be honest.  I want him to get help if he needs it, but I was afraid that by telling her the things he could do, it might change his score, leaving him ineligible for services.  But I needed to give her the whole picture.  It wasn’t fair to Lewis, to the therapist, or to the system if I didn’t.

So I told her everything.  I told her he could count to 12, but wasn’t sure if anyone else could understand him.  She asked to hear that, and as she listened, she shook her head.  “I probably would have known he was saying ‘two’, but only because I knew the context”.  I told her he knew all the letters of the alphabet, and tried to sing along with songs but no words came out.  I told her that even though I knew he could say “Mama”, he never actually called me that.  I told her that I know he understands everything, but he’s starting to get frustrated because he can’t get us to figure out what he wants.

The therapist told me she appreciated my honesty and understood exactly what I was saying.  The counting and the letters, while great, isn’t really “speech” in her opinion.  It’s just rote sounds back.  She’s looking for labels of nouns, verbs to get his wants and needs across, and expressive language.  She sat there and scored the speech portion of the Michigan while Lewis had a snack.  Then she scored it again.  And again.

She looked up at me and her face said it all.  Yes, his speech was delayed.  But not delayed enough for services.

Same old story for us.  Just like our evaluation in May, and just like almost all of Howie’s evaluations, we’re smack dab in the middle of the “gray area”.

I could tell the therapist felt terrible.  She told me that she knows he needs help and would really benefit from services.  She’s worried about the gap between his expressive and receptive language, and is concerned that he’ll start to get frustrated and we’ll see behavioral problems creep out.  She could pick him up under “clinical judgment” for six months, but just like she told me last time, she’s worried that we’d lose time when he really needed it – the 2 1/2 yrs old to 3 years old time frame, where the speech demands are so much higher.  She recommended waiting again until January, doing another eval, and then she could pick him up from February to August, right before he starts preschool.

In addition, she gave me some new tips for getting Lewis to start talking.  She told me to “sabotage” his day a bit when it was just the two of us home, keeping things from him until he attempts the word.  I should concentrate on getting Lewis to say the last sound of the word, because he would use the same “b” sound for “bus” and “ball”.  She recommended that I focus on just saying one word, not a two word combination.  At that point, I had been trying to get him to say “more juice”, but in her opinion getting him to say just “juice” was the most important part.

(on a side soapbox note, the therapist also told me that if we had qualified, the fees would have been significantly higher than we had paid in the past.  Because of budget cuts, the department of public health was forced to either raise fees or increase eligibility requirements even more – by a 50% delay.  That meant that two year old would have to be speaking at a one year old level in order to qualify for help, thereby missing a whole group of kiddos who need help.  Of course, we all know that it means that when those kids get to school, their delays would have been SO significant that the department of education would have been footing the bill…same pot of money, just different department.  Just dumb.  ok, off the soapbox)

So, long story even longer…

This past week we’ve been trying really hard to implement her suggestions.  I wouldn’t let him down from his high chair until he said “done” instead of “da”.  If he wanted a banana, he had to say it and not “na na”.  And if he wanted out of his crib, he had to tell me “hi, Mama”.

It’s working.  He says “done” – the whole word – when he’s finished eating.  He’s saying “ba nana” (with the space).  And while he’s still not calling for me with “mama”, he will repeat “hi mama” perfectly when I say it first.

Great, right?  So why do I feel so guilty?

In one week of intensive work on my part, we’re getting somewhere.  It’s not like he caught up in a week, or will even catch up in a month, but we made progress.  Because I was giving him my attention.  You know, what a mother should do.  A mother who is able to focus on her kid.  A mother who isn’t completely exhausted with…everything else.  I know it’s pointless to play the “what if” game, but in this case I can’t help it.

Now it’s time for us both to play catch up.

“I may know the word
But not say it
I may love the fruit
But not taste it
I may know the way
To comfort & to soothe
A worried face
But fold my hands
Indifferent”
– I May Know The Word by Natalie Merchant

Tonight was Back to School night for my son’s preschool. As I walked up the steps into the big brick building with all the other parents, a weird feeling came over me. A little bit of nerves, a little bit of sadness, plus a little bit of something else that I couldn’t quite place.

Until I remembered. This is where it all started. Exactly one year ago. This was the night when I realized that my son needed help.

Tonight I walked past the classroom he was in last year and glanced in as the parents were taking their seats in the little blue and red chairs arranged on the circle time mat. One year ago, that was me. The “Me” with the lump in my throat. The “Me” that spent every preschool morning arguing and yelling because my son wouldn’t put his shoes on. The “Me” that dragged him out of school kicking and screaming because playground time was over. The “Me” that hadn’t slept more than 3 hours straight in 3 years. The “Me” that just couldn’t figure out what was going on with my kid.

I stopped for a moment in the hallway and closed my eyes. I remember that evening so well. I remember barely listening to his teacher discuss the preschool curriculum because I was still stuck on how terrible his day at school had been. I remember half-listening to her story about how the kids had table time, and that one kid (no name given) kept taking other kids’ name tags off the tables and putting his own there because he wanted to play with the trains and only the trains. I remember knowing in my gut that was Howie, and while the other parents laughed at the anecdote, it made me want to cry.

I remember asking the aides in the classroom how things were going for Howie, and their response was “ask the teacher.” I remember staying late after everyone was gone and talking at length with his teacher about his transition issues, his meltdowns and his difficult behavior in the classroom. She told me that the general accommodations in the classroom weren’t working for Howie anymore. And I remember this incredibly smart and astute teacher telling me – without words – that we needed to get Howie evaluated by a professional.

And I remember crying the “ugly cry” the whole ride home from that Back to School night one year ago, knowing in my heart that she was right but not knowing what it all meant or even what to do next.

That night set in motion a chain of events that would change our family forever. There was the initial appointment with our pediatrician who told us that she didn’t think Howie was on the spectrum, but that he had some “spectrum-like tendencies”. There was the speech/language assessment and the hearing test to rule out anything physical as the reason why Howie couldn’t process two-step directions. There was the piles of paperwork as we tried to get him on every wait list possible for an evaluation, and the call three months later for a appointment with a developmental pediatrician. Then the diagnosis that we expected but still didn’t understand – autism spectrum disorder.

From there, much is a blur. The diagnosis allowed us to reconvene our special education team and develop Howie’s IEP. He was assigned ABA techs to work with him one-on-one in and out of the classroom. He had OT visits, social speech groups, and home visits. The school tailor made a program to fit his needs. I got PECS cards, visual schedules, and daily log sheets of his activities. I learned words like “stimming”, “perseverate”, and “sensory diet”. We gave Howie our undivided attention and divided our attention with our other two boys. We bought books, weighted blankets and therapy equipment. We learned behavior modification techniques and used phrases like “red choices” and “green choices”. We worked closely with the amazing school staff and that incredible teacher to do whatever we could to give Howie a chance at loving school and succeeding in life.

And…

What a difference a year makes.

I walked into his new full day inclusion classroom tonight with a smile on my face. My husband and I had met with his teachers last week and I already knew things were going well. He has two incredible ABA techs that really understand him. They are giving him the choice of starting his day in the OT room to help “get the wiggles out”.

Let me say that again – they are giving HIM the choice. Which means he has reached a point in one year where he is able to verbalize his sensory needs. My little guy, who one year ago couldn’t leave school without a total and complete meltdown, now understands his body enough to know what he needs. My little guy, who one year ago couldn’t lose a game or draw a picture without a complete on-the-floor tantrum, is now running races on the playground and bringing home pictures that he wants hung up in my husband’s office. Of course, this is all with his amazing teachers by his side, cheering him on. But still…after this incredibly hard year, filled with anxiety and confusion and tears and difficult work…maybe we’re finally getting somewhere. Maybe we’re finally understanding our son.

I sat through the entire curriculum presentation tonight feeling – for the first time in a year – that my son could do it. I looked around at the walls and he actually had artwork up for display. Every one of his teachers came up to me and told me how much they enjoyed having him in class. Every one of them told me how amazed they were at how well his was doing and what a difference it was, even from just summer school. One of his techs actually told me that Howie’s “the reason I love my job.”

What a difference a year makes.

And now, maybe there’s hope for kindergarten back to school night next year.

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?”
-Seasons of Love from RENT

In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty-five thousand six hundred minutes
How do you measure, a year in the life
?”

I’m lucky enough to be over at Hopeful Parents on the 17th of every month. Today, I’m talking about fighting for your rights…and bus routes.

Click here for You’ve Gotta Fight For Your Right

On my soapbox for one moment.

I read a lot of blogs. I mean A LOT. Probably too many (I think my husband would say scratch the “probably”). But I do it for a reason. In my constant struggle to become a better parent – maybe a more understanding parent – I search out others who are experiencing what I am and try to learn from their successes and lessons learned.

I read all these blogs because the mainstream parenting magazines just don’t fit my family anymore. I can’t tell you how many times I’ve picked one of them up with the teaser “Tips to help your picky eater!” and just put it down laughing. I need the “tips for helping your kid who will only eat crunchy orange food off of a green plate and has to drink his smoothie through a green straw!” Not surprisingly, that’s not the headline in next month’s Parents magazine.

However, it is the headline in many of the blogs I read. In addition to the amazing live and in person support group I have, these writers have become my guide through my everyday struggles. These mothers and fathers live what I live, and through our blogs and comments we share advice, ideas, and encourage each other to press on another day. Because it’s about our kids. We know that we aren’t medical experts, but we have been through enough to help others try not to reinvent the wheel.

But I’ve noticed lately a weird trend in some of the blog comments I’ve been reading. Things are starting to get nasty. Personal. People attacking the character and background of other bloggers. I’m not going to link to any of the personal attacks here because I don’t want to give them any more attention than they’ve already received. But it’s mean and unnecessary, and in many times there just to incite the other readers. Is that really what we’re all about?

Now I haven’t been writing for very long, so maybe this has been happening for a while and I’m just naive. I know that the autism community is divided on many issues – from causes to treatments to policy issues – and has been for a very long time. There’s nothing wrong with that. But to call someone a bad person or a bad parent because of what he or she believes or does for their child? Seems out of character for a community that wants their kids to be treated with respect and dignity in the outside world.

My father was the ultimate politician and I learned a lot from watching him. He would sit down with someone who was completely opposed to his position on a particular issue, listen to them carefully and thoughtfully, and then quietly explain his perspective and point of view. It was never about him or about pushing his agenda. He made it about the issue (usually about kids) and helped turn the discussion into a civil exchange of ideas. He would change the debate. More often than not, the person walked away with a new way of looking at the problem. And every time they walked away with a favorable impression of my dad.

Maybe it’s time to reshape our debate …again.

I’m joining with the amazing editors at the Autism Blogs Directory and am taking the next step to help create a new community. They challenged their readers to pick a blog they have never seen, read it, and leave a respectful and thoughtful comment. There are so many wonderful writers out there sharing their stories daily and I know I have a lot to learn from everyone.

So here’s my pick. It’s Laura from “Life in the House that Asperger Built“. I picked it because she’s a mom like me with children on the spectrum. But she’s also on the spectrum herself, as is her husband. I’m getting a unique perspective from her that I haven’t read anywhere yet, and I’m so grateful for that. I look forward to learning so much from her.

I’m hoping that others take up the same challenge. On the right side of my home page I have a long list of my favorite special needs blogs – choose any of them and you’ll find a fantastic writer behind that link. Have a child with sensory processing disorder? Click on ANY of my friends who are part of the SPD blogger network. A child on the spectrum? Click on ANY of my friends under “Websites I Like”.

I know that there are people who read this who don’t have kids with special needs (thank you friends and family who are here because I guilted you into signing up!) I hope you take me up on this challenge too. Are you a runner? Check out my friend Charlotte‘s blog. Interested in parenting and social justice issues? Read my friend Gaetane‘s blog. Or go to Google and type in your favorite hobby, click on blogs, and choose the first one that comes up.

Take a moment to read their latest post and leave a comment if you can. It’s the best way to rebuild our communities and support each other. It’s the best way we can tell each other we’re not alone. It’s the best way to start again.

I’m getting off my soapbox to look Spectrummy Mummy’s latest post. Her youngest was just evaluated by early intervention and I want to know how it went. I want to tell her that I’m there for her no matter what, because on Friday I’ll be in the same boat again. And I need her there with me then.

I think you’ve made your point now.
You’ve even gone a bit too far to get the message home.
Before it gets too frightening,
We ought to call a vote,
So could we start again please?
” – Could We Start Again, Please from Jesus Christ Superstar

I am beyond honored to have a guest post today on Hartley’s Life with Three Boys. She runs the SPD Blogger Network, and is my inspiration for starting my blog. She has an amazing array of resources for families with children with sensory processing disorder, and lots of terrific guest posts and interviews. Please come check out my post today about siblings at:

That’s So Cliche!

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