December 21, 2013

My Return to Work by the Numbers

It's been a busy while since I've written anything here. So I figured I'd do a quick update with some stats from the past two months, in no particular order:

  • Number of trips to urgent care and/or the emergency room: 3 (two for Moe, one for me). We're all fine.
  • Number of beats per minute my heart was racing at urgent care: 120
  • Number of days caffeine-sober: 10
  • Number of new cars purchased: 1
  • Number of minutes per day new HOV lane-qualifying car saves: 25-30
  • Number of holidays celebrated: 3
  • Number of days of Hanukkah celebrated: 8
  • Number of latkes I've eaten: 9,724 (approximately).
  • Number of nannies fired: 1 (New replacement nanny is doing great!)
  • Number of times Moe bit previous, now fired nanny: 2
  • Number of haircuts we've given Moe: 1
  • Number of times the dog has peed on the floor, damaging already pretty beat up wood floors: 3
  • Number of minutes Jelly wants to be with me when I'm home: ALL OF THEM
  • Number of times Jelly has talked about the movie Frozen: 1 trillion
  • Lowest number of degrees walking from my car to work in the morning: 39
  • Number of times I've watched Abraham Lincoln: Vampire Hunter: 1. So Far.
  • Number of days until husband's birthday: 4
  • Number of presents purchased for husband: 0
And finally a very special one...
  • Number of years my mom and dad have been married on December 22: 45!
They make it look easy. Love you Mom and Dad!

October 27, 2013

Staying Connected After Returning to Work

Tomorrow, I'm returning to full time work after being a stay at home mom for over six years. In some ways, it seems like yesterday I was working at my last start-up. In other ways, I am a completely different person. My life, two children and one autism diagnosis later, is completely altered. And yet, inside, I am the same person. I need to bring that person into the light again.

I am beyond excited about the change. But I am also incredibly anxious about what I am leaving behind. When I became a mother, I made a commitment to love and protect my children. How can I protect them from an office? How will I know that they are safe and happy, especially when one of them cannot speak?

I always wanted my home to be the one the kids and their friends came to for parties and playdates. As it is now, regardless of my work, with Moe's full time therapy schedule, and our small Bay Area house, this isn't possible.

I worry about losing my connection with both kids, but especially with Jelly, who will be entering kindergarten next year. Who will help her with her homework? Will I know her friends like my mom knew mine?

Will I know what she is up to, especially now that the online world is so significant and much less visible. How will I know she is safe? How will I know she isn't being bullied? Or the bully?

The recent suicide of young teen Rebecca Sedwick after being bullied by two girls, shows how easily parents can be disconnected from their children. So much so, that parents of one of the accused bullies has asserted that her account must have been hacked. This seems unlikely to me, but more and more, it feels impossible to truly know what our kids are up to. Their online personas can be so totally different from their offline ones.

Obviously, I'm projecting. Jelly is only in preschool. Moe is home with very capable nannies and therapists. Jeff works just down the street. I know there are plenty of families with two working parents; it is probably more common than not in the Bay Area. I would never think a working mother wouldn't be as connected to her children as one who stays home. It will just be different.

And, I hope, better.


This post was inspired by The Dinner, a novel by Herman Koch. Two brothers and their wives sit down for a tension filled dinner to discuss a tragedy that can change both families’ lives forever. Join From Left to Write on October 29 as we discuss The Dinner.  As a member, I received a copy of the book for review purposes.

September 27, 2013

Why We're Done With Speech Therapy

Moe has had speech therapy since he was two years old. That's just over four years of speech therapy. Moe has gotten speech from early intervention, from the school district, and from a private highly recommended speech therapy practice.

We've used various methodologies from fill-ins, to singing, to PROMPT, a method designed to help people like Moe with apraxia.

Moe still doesn't talk. Not even a little bit.

I mean, he makes a lot of sounds, but very rarely are they even context-appropriate approximations. And of course, speech therapy isn't just about talking. His receptive language and communication skills (like pointing and gesturing and nodding yes and no) have greatly improved, especially in the last year.

Moe is a bright kid. He's engaged with people and his surroundings. He tries hard. But the language part of his brain is severely delayed. We know the motor planning piece is a big challenge. He will often shape his mouth correctly, but can't get the breath and sound. Or he makes the sound but can't shape his mouth. Beyond that, it is hard to say why language is so hard for him.

Moe's frustration level and associated behaviors have been increasing in speech therapy. On Monday, he tried to bite the SLP, grabbing and tearing her shirt. I felt terrible. Truthfully, I've been dreading taking Moe for a while. We spend a lot of time managing behaviors, working on the same sounds, working on a wide variety of activities but in the same office environment.

Yesterday, I received a call from the director of the clinic. She is a very intelligent, kind woman. Unlike other people we've worked with, she never implied Moe was a problem. She emphasized how much our SLP adores our family. But she made the point that after the length of time we've been working together, if the therapy is appropriate, we should see more progress. She made the point that we have to listen to what Moe is telling us. Speech therapy, at least the kind they do in this practice, isn't working for him right now.

But how do you give up speech therapy when your kid isn't talking?

She suggested another practice that is set up to incorporate OT and speech together. She suggested that maybe we also take a break for a bit. Sometimes the greatest progress happens during the down times. And if there's anything I've learned about Moe, it's that he needs to get there on his own. We can show and teach, but if his brain isn't ready for speech, there isn't much we can do.

On the one hand, it is devastating. It is hard not to feel like they are giving up on him. But I know in my heart, she's right. It isn't working for him.

But speech wasn't working. OT wasn't working. School wasn't working. Some days, it seems nobody knows how to help him.

We are still meeting weekly with an AAC specialist, who is also an SLP. But the truth is, he's struggling there as well. I'll write more about that another day.

The AAC specialist talks a lot about "total communication," or teaching Moe to communicate in any (appropriate, non-aggressive) way he can: gestures, sounds, signs, and the speech device. Of course, we respect all forms of communication throughout the day, but I'd like to speak with her more about incorporating that into our sessions (rather than just focusing on AAC).

But for now, we're taking a break from speech therapy.

September 7, 2013

Making Positive Changes in the Wake of the Stapleton Tragedy

If you follow many autism blogs or are involved in the autism communities on Facebook, you have certainly by now heard about the attempted murder-suicide of Issy Stapleton by her mother, Kelli.

I did not know Kelli, nor did I follow her blog closely. I make no attempt to defend an indefensible act and I certainly won't give any of my blog's space to those who do. She has been arrested and is in the hands of the justice system now. Last I heard, Issy was still unconscious and is likely to have brain damage.

There is a Stapleton dad and other Stapleton kids who are left to deal with all of this. It is nothing short of a tragedy. My heart breaks for Issy, for her family, and yes, even for Kelli Stapleton who has done the one thing a mother is never supposed to do: harm her child.

Some of what I'm reading suggests that there are only two camps: those who condemn Kelli Stapleton and those who defend her. This is not true. As intelligent, feeling, human beings, most of the people I know are shocked and saddened. They know this was a horrific act and make no excuses, but are having trouble reconciling the act with the Kelli they knew. They wonder what could have brought her to such a desperate point. And most importantly, what can we do to keep it from happening again?

My son Moe is only six. He barely weighs 40 pounds. But he is strong. He scratches and bites. He once walked up to Jelly while she was sitting at a table, grabbed her ponytail, and threw her to the ground. It was scary. The truth is, he is a difficult child to parent. And while it is my job to do so, while I am learning to parent him with love and acceptance and understanding, I am only human. It is hard. There is no shame in admitting that.

Moe is with me 24 hours a day because we do not have an appropriate schooling option for him. There are days when the attacks are relentless. When every diaper change, every buckling in and out of the car seat, every single interaction comes with aggression. My heart races. I spend entire afternoons running interference between Moe and Jelly and the dog to keep them all safe. Nobody enjoys that. Days are coupled with serious lack of sleep. In those times, I do not feel like myself. My patience wears dangerously thin.

In those times, I can't help but think about what happens when Moe is 12. Or 20. How will I keep Jelly safe then? What happens when he's bigger than me? It is an honest question.

I hope Moe and I will continue to learn together what he needs to avoid this aggression. I hope that with better communication skills and more maturity, Moe will be able to manage his frustration. But when I watch videos of fourteen year old Issy, pulling her mother's hair and attacking therapists, I see Moe. I see him in the way she moves. I also recognize Kelli's pain, both physical and emotional. I don't defend her final actions. But her life before that point? Looks a lot like mine.

We say "get help." But there simply aren't a lot of options. Let's get to the nitty gritty. Yes, in an emergency there is 911. But the long term outlook is tough to think about. It's not like I can just check Moe into a residential facility with 24 hour 1:1 care, where I know he will be safe and happy. These places don't exist in great numbers, and the ones that do have waiting lists of several years - assuming one could even afford it. And it makes me incredibly sad to think of Moe not being at home. Respite options are there, but we're talking a few hours at a time. At the end of the day, it is me and Jeff and Moe.

Forever.

And sometimes that feels overwhelming. Frustrating. Scary. Desperate.

The Stanford Prison experiment studies, Stanley Milgram's obedience to authority experiment and others show that we as humans can be pushed to do things under stressful conditions that we wouldn't have thought ourselves otherwise capable of doing. It isn't that hard to push people to that level. And make no mistake, raising an aggressive, autistic child is stressful. It is not the child's fault. Issy did not deserve to be hurt. But the reality is many parents are under extreme stress.

Some say that the only legitimate reaction is to cry "monster!" and refuse to discuss any potential solutions to the seemingly growing (or maybe just more visible) problem of caregiver stress. To those who have suffered abuse, it seems unfeeling that we would give the abuser a second thought. I wish we could brush them off as monsters. I wish it were enough to say "stop killing kids." It isn't.

It isn't enough to hate and vilify. This keeps happening. Something has to change. We can simultaneously have empathy and say that Kelli Stapleton took the unequivocally wrong path. How can we change the outcome for next time? We can't just say "get help" and not provide that help.

And we certainly don't need to add to the conversation of hate. It gets us nowhere to make claims that Kelli's blog was just a cover for some master plan to murder her daughter. It gets us nowhere to make a petition to get this filed as a hate crime. It doesn't help Issy or her family. It doesn't help any other child or adult who might be in harm's way.

I only want to know how we keep this from happening again. And we cannot have that conversation without admitting that it could be any of us, that we are fallible even in our enduring love for our children. And that sometimes the future seems so desperate, so without answers, that logic and reason and love for our kids and hatred for those who would hurt them are not enough.

I don't have the answer. I have ideas for better living situations for families, for early intervention programs for parents as well as kids, for true long term care solutions for people with autism. A friend of mine is working on a petition to amend safe haven laws. There are lots of things we can do.

But what we have now? It isn't working.

September 4, 2013

Gold Medal Winner

In the special needs community, we like to say "there are no winners in the hardship olympics." There's no better way to make a parent feel lousy than to one-up her with your own problems. You know the type, right? If I said "Poor Moe has had a fever for two days" she would say "That's nothing! My kid once had a 103 fever for a week!" Whatever is going on with you, someone else has it worse. That's a given. But no one wants to play a game of misery one-upmanship.

On the other hand, I have to admit it gets to me when I hear other people complaining about "typical" problems with their kids. "I could not get little Jimmy to go to bed when we were on vacation in Lake Tahoe!" It is petty, but I can't help but think "I would kill to be able to go on vacation in Lake Tahoe - with our without sleep."

We all have problems. The truth is, if I had two typically developing kids, I'd be complaining about the same things. And, yes, parenting any child is challenging. We only know what we know. And as the parent of one child with a disability, and one without, I live in both worlds. I complain about Jelly's non-stop chatter in one breath, then pray for words - any words - from Moe in the next. Both are legitimate, and yet one certainly carries more weight. I have that perspective. I also know that things could be worse. Friends' kids struggle with seizures, mobility issues, and other medical concerns we, thankfully, don't have to deal with.

There is a sociological theory (that I can't seem to find a name for) that says that we compare ourselves to others who are out of reach, but just so. In other words, someone might be jealous of their neighbor's new car, or the size of the houses one town over, but they aren't really jealous of, say Oprah Winfrey. Most of us know we can't actually be billionaires. I suppose that's why they call it "keeping up with the Joneses" and not "keeping up with the Winfreys."

I've started feeling this way within the special needs community. I have become much better at not being jealous of my friends' "normal" lives. Instead, I look at other kids with autism. I see the strides they're making and I wonder why Moe can't be more like them. Why can't he at least talk? Why can't he make as much progress with his AAC device? Why couldn't Moe have Asperger's or ADHD instead of being so severely affected with autism?

It is unfair, of course, and takes away from the very real challenges that families struggling with those disorders face. It is also unfair to Moe who is on his own path, and doing the best he can. We are doing our best together but sometimes I can't help myself.

I recently read "Raising My Rainbow," by Lori Duron. The book is about raising a young boy who is gender non-conforming, preferring girl toys and clothes to traditional boy things. Something didn't sit right with me in this book, but I tried to relate to the author's message. As parents of kids with autism understand all too well, it is tough to be a kid in a world where blending in is valued, and standing out for being different for any reason is a call for teasing and bullies. At one point, however, she relates raising her son C.J. to having a special needs child:
Special needs kids are often defined by what they cannot do. My son cannot blend in. He cannot wear boring socks. He cannot resist having his nails painted. He cannot stop dancing when music comes on. He cannot resist the urge to strike a pose for the camera...
My honest reaction to that passage? HOLD THE EVER LOVING PHONE. Your son has special needs because he cannot wear boring socks?? I should have such problems. (Also, plenty of girls don't dance or strike a pose, but that's for another post.) And this passage seems to take away from the very real problems of bullying and isolation that her son may face some day as a boy who prefers traditionally girl things. But my kid can't talk. He isn't toilet trained. He doesn't use a fork. We cannot find an appropriate school for him, for Pete's sake. I have a hard time sympathizing with a family because their four year old (yes - the kid was skill in PreK) likes sparkly socks.

Is this fair? Probably not. And I admit it comes from a place where I already found much of this story somewhat disingenuous. (It seemed to be jumping the gun, for example, to start researching gender reassignment surgery because her two and half year old loved Barbies.) That said, one message is clear. No one has it easy, and everyone's problems are their own. But before you start complaining, try to keep some perspective and remember that someone is praying for the things you take for granted.



This post was inspired by the memoir Raising My Rainbow by Lori Duron as she shares her journey raising a gender creative son. Join From Left to Write on September 5 as we discuss Raising My Rainbow.  As a member, I received a copy of the book for review purposes.

For other book reviews I've done, see the Book Reviews tab above.

August 28, 2013

The Day I Lost My Mind (Updated!)

Out to breakfast!
I cannot believe I forgot the other craptastic thing that happened this week. See credit card debacle, below.

Write it down, people. August 28, 2013: The day I officially lost my mind. Let me explain.

Two weeks ago, Jeff decided to get sick. Like spent the entire weekend and better part of a week in bed sick. I reacted to this illness as any loving wife would: by getting totally irritated and planning an upcoming girls' weekend away. One course of antibiotics later, Jeff is back on his feet. Mostly.

Last week, we had a new kitchen floor installed. Our old cheap tile was pretty beat up and I wanted a nice, cushy, cork floor. The floor was installed Thursday and Friday. I was very stressed about this because Moe has ABA at home all day and I wasn't sure how we would keep him out of the house for that long. But with one community outing (see photo) and some creativity, we got through it.

Saturday, we planned to celebrate my book club's ten year anniversary. We had a big party at a friend's
Gorgeous, right?
house, and all the families were invited. In an attempt to allow Jeff some time to mingle and not spend the whole time chasing Moe, we brought our nanny to help. It was great, but Moe just wanted to jump into the (unfenced) pool. There were several near-misses. We did have the foresight to take 2 cars, so after a couple hours, Jeff took Moe and the nanny home.

The rest of the weekend was good, and included cheering our friend who ran in (and won!) the first annual Milton Friedman marathon, and a ride on a steam train.

This week was slated to be a busy one that included: a big job interview for me, back to school night for Jelly, Moe's IEP, and our eighth wedding anniversary. We planned to go out and get a babysitter and everything.

So what happened? Moe and I both got sick. Fever, chills, the whole bit. Jeff is sick too, still or again, we're not really sure. We've both got coughs. We canceled our anniversary dinner and I went to bed before 9. I had to reschedule my interview today.

Stuck at home, I checked my email and saw a credit card bill. I checked it, and it was larger than expected, which was odd since I knew I just paid it. Turns out that somehow I transposed some of the account numbers on my bill pay account (which is weird because I've been paying this credit card the same way for months, but that's a mystery for another time). Because the numbers I used were actually someone else's credit card number, I paid some random person's credit card. Lucky them!

This turned out to be a tricky thing to fix. As far as the bank was concerned, the money was gone. As far as the credit card company was concerned, it went to a legitimate account. Anyway, after several back and forth calls, I was able to get the information I needed, and within 24 hours, the issue was fixed. They even credited me back the late fee and interest charges! I apologize to the person who thought they had a benefactor paying their credit card.

But wait. There's more. Remember those beautiful floors? Well, today I smelled something funny. I looked alongside the fridge where I could see the one thing that is really bad for cork: water. That's right, kids, the refrigerator was leaking.

*insert expletives of choice here*

I immediately start texting Jeff who comes home and moves the refrigerator out. We sop up the mess and I decide I should get a fan to dry things out a bit more.

Fueled by adrenaline and cold pills, I made my first stop: Rite Aid. Their seasonal aisle was mid-transition to fall. I mean, it's August and 85 degrees out, so of course I'm ready to buy hay covered pumpkins. But they did have this:

Also available in chicken
Next stop: Home Depot. Veeerrrry long story short involving a new employee (who thought that the website said they had 101 in stock but that was really the number of reviews of the fan), they didn't have any fans.

At this point I was not going to make Jelly's back to school night and I was having flashbacks to the infamous laundry soap search of 2011. Jeff suggested Fry's (which to his credit he suggested initially) so off I went to that retail hell hole, where there was a huge display of fans right in the center of the store. Home again, home again, jiggity jig.

Which brings us to now. The corner behind the fridge is pretty messed up. Turns out that even though our contract stated that the homeowners would disconnect and reconnect the line to the fridge, the very nice floor installer guy did it. And why would we pull the fridge out when everything was working? But he didn't test it. If he had tested it, we would have noticed a small pinhole in the copper pipe that has been leaking water at a slow but steady rate for 5 days.

Five days. That's all it took for us to ruin our floor. Five days.

This is why we don't have nice things.

August 21, 2013

Skills, Expertise, and Cheese

A couple years ago I wrote a piece about being (or not being) really good at something. With autistic people, such talents are often called "splinter skills," meaning that an otherwise "low functioning" individual might have one outstanding skill. For some that may be true, but autistic people, like anyone, can be good at one thing or at many things. And non-autistic people can, of course, have an outstanding skill that stands out above the rest.

Speaking of skills, I've recently begun looking for a job. A job search is all about highlighting your skills, at least those that might make a difference in the workplace. I got skillz. I can write (see previous sentence) and speak in front of a group. I am good at making complicated products or topics easy for people to understand. I can organize and prioritize and probably some other izes too.

When I was interviewing for the last job I had, my interviewer asked me a question that threw me a bit. He asked me what I was expert at. I was momentarily stumped. Skill is different than expertise. In technology, someone might be a skilled programmer, but not, say, a security expert. She might be a skilled graphic designer but not expert in user experience.

I am a skilled baker and cook, but I am by no means an expert. If something goes wrong, I can't troubleshoot or adjust. I throw out and start over. Someone might be a skilled trumpet player, able to read music and play with good tone, maybe even improvise a jazz solo. But expertise requires something more, something reserved for that top few who really know the instrument. Who don't just read the music (or follow the recipe, or sew the pattern), but who take it to the next level, responding to shifts in the environment or the subtleties of the instrument or something that I'm not expert enough to even explain.

I don't feature my special needs parenting front and center on my resume, though several pieces about my experience are included as writing samples on my portfolio. It is hard to find a job after being out of the workforce for a while, and I don't want to give an employer any doubts about to my ability to perform a job. It's ironic, because I am confident that being a parent, and especially an autism parent, has made me better equipped to perform at any job. And now, because of this experience, I can say the I am expert in one very important thing:

Getting. Shit. Done.

If you've met an autism parent, you've met a parent who has battled regional centers, school districts, insurance companies and doctors offices. There's no roadblock I can't clear, no phone call I won't make, no schedule I can't maneuver. I cannot be swayed by intimidation or judgement or ignorance. I make critical decisions on a daily basis and multi-task like nobody's business. I have learned sign language, speech and occupational therapy skills, not to mention biology, neurology and law. No bureaucracy is too big, no budget too small.

I'm not sure I'm an autism expert. But if you need something done, trust me: ask an autism mom.



This post was inspired by The Whole Fromage by Kathe Lison, who traveled to France to discover its artisanal cheeses and speak with real cheese experts. Join From Left to Write on August 22 as we discuss The Whole Fromage.  As a member, I received a copy of the book for review purposes.

August 6, 2013

It's a Good Life

Yesterday afternoon, Moe ran over to Jelly, grabbed her ponytail, and threw her to the floor. As far as I could tell, he wasn't being mean, just impulsive. She was frightened, of course, but not hurt. But we are living on edge.

Moe has been going through a very difficult time. He's been unhappy and aggressive. We've been severely restricted in what we've been able to do and where we've been able to go, even canceling our much anticipated visit to the beach on Saturday. We're doing everything we can to keep Moe calm and happy.

While we try to figure out the root causes of these behavioral changes, which are likely numerous and complex, we have been trying hard to avoid some of the trigger interactions. Moe, for example, likes to go in my bedroom. That's generally fine, but has become problematic when we ask him to leave the room. But saying no has also become a problem, so yesterday, when he wanted to go in, I let him. Same thing with playing with the iPad. It's become a bit frustrating for him so we've been trying to take a break from that as well. But I gave in when he asked.

I realized how much we've all been walking on eggshells around here. Everything and anything can be a trigger and we're doing whatever we can to keep him happy. I was reminded of the Twilight Zone episode called "It's a Good Life." In that episode, there is a boy with extraordinary godlike mental powers. He uses those powers to keep the town hostage, horribly punishing anyone he doesn't like. Everyone is afraid of him, but they do what he wants, constantly praising him and saying how good things are, and that the trouble he is causing is "a real good thing."

I used to think the moral of this episode had to do with what happens to kids without discipline. Through a behavioral lens, I certainly don't want to encourage Moe's aggressive behaviors by being too lax with him or letting him get away with things we wouldn't normally let him do, like climb on the kitchen counter, just to avoid a meltdown.

But there's more to the Twilight Zone episode. The parents have so little control over their son's behavior and I feel this frustration. I think this shines a light on how most children feel, controlling so few aspects of their lives. Parents make decisions with what must seem like godlike powers. This feeling would be even more exaggerated for a child with communication challenges. And while I think there is a lot going on with Moe right now, he certainly does seem to be trying to exhibit some level of control over his life. So perhaps letting Moe climb on the kitchen counter isn't being lenient, but is letting him choose his own snack by doing the one thing he can easily do: get it down himself.

Living in crisis mode doesn't leave a lot of time for writing. I hope to have a chance to describe how we are trying to figure out what is going on with Moe and why it is so complicated. For now, I'm going to enjoy a moment of relative calm in the house, and hope that I haven't just crossed over into The Twilight Zone.

July 24, 2013

Choosing a Case for your AAC Device (with a Giveaway!)

This is part 3 of my series about choosing an AAC device. Click to read Part 1 (Apps vs Devices) and Part 2 (App Review).

If you choose a stand-alone device, chances are it comes with a built-in case. But if you choose a tablet with an AAC app as we did, you'll need to choose a case. In this post, I'll review three iPad cases. There are, of course, many many cases to choose from, and if you have a favorite, please do leave it in the comments.

When I looked into cases for our dedicated AAC iPad, I had several criteria for an ideal case.

First, it has to be durable. Of course, all cases have to protect, but because your AAC device will be coming with you everywhere, it is even more likely to be dropped, bumped, and generally treated more like sports equipment than a piece of expensive electronics.

Second, it has to be easy for the user to carry. Since many kids will be taking their devices to school, or even just around the house, it should have a carry handle and preferably a strap that will allow hands-free transportation.

Third, it should have a stand allowing the device to be upright on a table.

And finally, it should ideally amplify the sound loud enough to hear in a noisy environment like a restaurant.

Otterbox


Otterbox Defender
I have had an Otterbox Defender series case on "my" iPad since it became "our" (read: the kids') iPad.
Our iPad has survived many falls, throws, and even bites with this case. Food has been mashed on the screen, so I love that it has a built-in screen protector. Putting the case on the iPad does not require any screws, but connects well, and Moe has not ever gotten it off. The case separates into two parts, allowing the iPad to stand up in both landscape and portrait orientations, and Moe has no trouble (for better or worse) separating the two parts. Eventually (after well over a year), he did break the stand and the clips that hold the two parts together cracked. The Otterbox comes in many colors, and allows for easy distinction between devices if you have a non-AAC iPad in addition to the dedicated speech device. The case does not, however have a carry handle and is fairly bulky. It is moderately priced.

Pros:
Durable
Stand in both portrait and landscape orientations
Built-in screen protector
Many colors
Replacement warranty

Cons:
Clips and stand can break
No carry strap or handle

Cost: About $65 on Amazon.

iAdapter

iAdapter
This is the case that was recommended by our SLP and I see many kids carrying this case. It has a built-in handle and there are several accessories available, including a carry strap, wheelchair attachment, and bluetooth keyboard. It comes in two parts that separate and screw together. This ensures your child won't get the case off, but is also a pain if you have to open it. It has built-in speakers, making the case a little bulky, but also helps amplify the sound in noisier environments. The case comes in black or grey, but some customization via stickers or "skins" is available, which is nice for people who bring their device to school or a place where others may be using a device with the same case. (Our stickers are already starting to peel off.) There is also a nice slider that covers the home button, though Moe had no trouble figuring out how to open it.

There are a few issues with this case. The first is that the speakers need to be charged, so you have to plug two things in every night. The kickstand does not attach at the bottom to the case, so when you walk with it, it bounces against the case and is very annoying. You can put the case into the carry bag, but I got tired of taking the device in and out of the bag, which is a separate piece and likely to get lost. There is no built-in screen protector, so you need to use the kind that sticks on the screen. I don't think these protect as well, and they are hard to put on straight and without air bubbles. Finally, this case is very expensive. The case runs between $265-$345, depending on the accessories you choose.

Pros:
Durable
Kickstand for standing upright on a table
Good amplification
Some customization
Lots of available accessories

Cons:
Expensive
Requires charging
No build-in screen protector
Sticker skins peel off easily

Cost: $265 standard, $345 bundle

GoNow case

GoNow for iPad and iPad Mini

The GoNow case is made by Attainment Company, which also makes the GoTalk NOW AAC app, and the GoTalk Express device. This case is light weight and seems to offer good protection, though does not include a screen protector. It comes in a silver color, has a built-in handle, and locations to attach a carry strap, though a strap is not included with the case. The case comes in two parts that must be screwed on, but the screws are attached to the case, so they don't get lost when taking the case apart. The case has a speaker which is designed to amplify the iPad sound acoustically, without electronics, so it doesn't need to be charged. There is also a switch on the front that magnetically locks and unlocks the device (though this doesn't work if you use your app in Guided Access mode, as I do). It does not have a kickstand, though I've been told one may be included in a future version. At $59, it is a relatively inexpensive option as well.

Pros:
Lightweight
Relatively inexpensive
Acoustic amplification that doesn't require charging

Cons:
No screen protector
No table stand

Cost: $59

We have stuck with the GoNow case, and with the addition of a stick-on screen protector and carry strap have found this to be a good option. I recently ordered a keyguard for the LAMP Words for Life App, which I think will be another nice addition. I highly recommend this case.

There are some other cool cases, including the Big Grips (reviewed by Adventures in Extreme Parenting) and the KidBox (which at under $20 could be an interesting option).

AND NOW...THE GIVEAWAY!

Attainment Company has offered to give away a GoNow case to one lucky winner! Just leave a comment below with your favorite iPad case. Contest will stay open through Monday and I will announce the winner on Tuesday!

(Update: The GoNow case is compatible with iPad 2 and later, as well as the iPad mini.)

July 18, 2013

Medication Update

Tenex is a teeny tiny round pill.
It is very difficult to cut it into a quarter dose.
My last post was about starting medication with Moe. I was not expecting any miracles, of course, but was anxiously anticipating some improved sleep. I hoped that the result would be a decrease in negative behaviors, anxiety and dysregulation.

We started him on Tenex, orignally developed as a blood pressure medication but commonly used for kids with ADHD and autism. The first week went well. Moe fell asleep fairly late, between 9-9:30, but was much less agitated while falling asleep. He slept consistently through the night, and woke around 7:00. This is not enough sleep for a six year old, but at least it seemed to be uninterrupted sleep.

We started with 0.25 mg then increased to 0.5mg (a half pill) before bed. We were worried about how we would give Moe the pill, but it is so small that we just put it on a small spoonful of yogurt or pudding and he swallowed it no problem. Since the first week went well, we added a 0.25mg daytime dose as well. This proved to be too much for Moe, and he was very sleepy during the day. He also started waking up at night.

We decided to add the 0.25mg to his nighttime dose, so he would be taking 0.75mg at night. We didn't see much difference in sleep. What we did see, with increasing intensity, was a dramatic uptick in aggressive behaviors. Moe was not himself. He was scratching and biting with no clear antecedent. At one point when I was in the kitchen, he ran at me from the back and bit me. Fortunately, he only got the back of my shirt. It was scary, and I owe a huge amount of gratitude to Moe's ABA team, who scheduled extra sessions to provide additional support. (And apologies to the amazing M who was met with tears of my own as I opened the door earlier this week.)

Moe can't tell us exactly how he was feeling, but it was clear he wasn't happy. Was he feeling dizzy, one of the possible side effects of the drug? Was he overly tired? Upset stomach? We don't know. What we do know is there was a clear correlation with the increase in the med with the increase in behaviors. On the advice of our psychiatrist, we reduced the medication back to 0.5mg two nights ago. The following day was much better, though not great. Last night, we took him off medication entirely. He didn't fall asleep, and we gave him melatonin, but the result was about the same: about 9.5 hours of sleep.

He had a great first part of the morning today, but has since been very dysregulated, with lots of tears. But he's been much less aggressive, and his behavior is more consistent with overtired Moe, than feeling really crappy and pissed off at the world Moe.

So now we have a decision to make. We could do nothing and go back to the status quo, which wasn't great but was at least a known quantity. We could try the next medication on the list, Intuniv. This is the same drug (guanfacine) as Tenex, but in a once-a-day slow release dose. Or we could switch to a new drug, likely Clonidine, which has some various dosing options.

This is how these things go, I am told: trial and error until we find the right thing. I am grateful that we are working with a responsive and knowledgable psychiatrist who has returned my calls every single day. I will keep the blog posted with how things continue to progress.

June 26, 2013

Starting Medication

Moe was a great sleeper as a baby. Sure, we had the usual newborn stuff, but after he hit the 4 month mark, he learned to fall asleep on his own and slept through the night. But something happened around the time Moe turned two, which is also around the time he started regressing in other ways.

Moe gave up his nap. Then, slowly, his nighttime sleep got worse and worse. At first he had trouble falling asleep. We tried behavioral techniques, sensory calming techniques and eventually melatonin. Then he started having trouble staying asleep. Sometimes the melatonin wouldn't work. We would have good cycles and bad, but the last six months or more have been awful. Moe rarely slept through the night, and his awake times would often span several hours. It affects all of us, including four year old Jelly.

We had to get a handle on this, so we found a psychiatrist.

Side note: finding a good psychiatrist is hard to do. Most of the ones I contacted aren't taking new patients or have waiting lists of several months, some up to 8-10 months. Many do not take insurance. Still, time and persistence and perhaps a bit of luck paid off.

Over the past two weeks, we had several appointments with the psychiatrist. At the last one, she recommended some medication. I am thankful we have options, and yet we do not rush into meds lightly. Moe cannot tell us how he is feeling. He already has trouble learning new skills. We want to make sure his mind is still sharp and that he is able to learn.

Our primary goal was to tackle sleep. After that, we wanted to address some emotional dysregulation, impulsivity, some aggression, as well as hyperactive behavior. It is our belief that most of these come from being over tired and over stimulated, but we can't get a baseline on those behaviors until he's sleeping well. We do not believe Moe has ADHD.

So we discussed options, and have decided to go with a medication that will help with sleep, and should also help address some of the above, as well as anxiety. I'm not sure yet if I feel comfortable talking about Moe's specific medications on this blog, so I'm going to hold off on that for now. (If anyone has specific questions, feel free to contact me here or via my Facebook page).

Last night was the first night, and we will slowly ramp up the dose over the next week if he tolerates the medication. We were worried about getting him to swallow a pill, but it is very small and he swallows it down with a spoonful of pudding. I hope that will continue.

It took two hours for Moe to fall asleep last night, but he slept through. It wasn't a great day for him today. It is hard to know if that is because of the meds or if he just had a bad day.

Tonight, he fell asleep at a decent time as well. I will be tracking everything, from asleep and awake times to overall mood.

June 20, 2013

Doughnuts and Inspiration

Photo by Salim Virji
I've seen a few inspiring videos circulating social media lately. I'm not talking about what is sometimes called "inspiration porn," videos, in which, for example one "normal" person does something nice for a disabled person, and we can all pat ourselves on the back and go about our day. I'm talking about videos created by people who themselves have struggled. This video of a Chris Varney's TED talk called "Autism--How My Unstoppable Mother Proved the Experts Wrong," is particularly good.

I watched that video and thought, "Okay! It won't be easy, but we can do this!" It goes along with the new and improved attitude I've been trying to embrace, something bold and fearless but never self-aggrandizing. I've contemplated a tattoo, but my dad said he'd be very disappointed if I got one. (Yes, I am forty years old, why do you ask?)

Jeff and I had a great talk a couple of weeks ago about finding ways to move past Moe's challenges. We had a nice father's day weekend, which even included lunch with my parents and their friends at a restaurant. Moe, as if reading our minds and also adopting this can-do attitude for himself, was so well
behaved and ate an entire pizza.

I've been worried, too, about the effect Moe's behaviors and poor sleep are having on Jelly. Jeff and I spoke about that as well. Even though this isn't the dynamic we imagined for our kids, they still do have a relationship that is all their own and will continue to develop. Jelly, who is incredibly bright and sensitive, could really become an extraordinary person because of her brother. Of course, she could do this on her own, and her relationship with Moe is valuable in itself. But having a sibling with special needs, I hope, will give her a perspective others may not have.

So...even with the last two days when sleep has kind of fallen apart again, Moe has been working and trying really hard. We are seeing progress. Jelly has been enjoying swim lessons. Moe and Jelly have had some really sweet moments together. Other good things happened. I watched some videos.

Enter, the doughnut.

Our nanny is on vacation for a couple of days so I had both kids this afternoon, and nothing planned. Even with the building confidence of the successful restaurant outing and inspiring videos, I know my limits. A visit to the park is out of the question. Jelly wanted to go to Target and even suggested Moe could stay in the cart and she would walk with us, but I declined this clearly well thought out offer. Instead, I thought of doughnuts. Moe loves a relaxing car ride, so I thought we'd go to Krispy Kreme, get a couple doughnuts from the drive-thru, and have a little treat. I'd even put on Jelly's playlist, consisting of a dozen crazy-making pop songs from "Call Me Maybe" to "Party Rock Anthem." Everyone would be happy.

The car ride was fine. Jelly got a doughnut with sprinkles. I was sucked in by the seasonal promotion and got a key lime cheesecake doughnut, which I do not recommend. I should have stuck with my standard lemon filled. I got Moe a plain sugar doughnut.

We pulled into the parking lot. I smiled and handed back the sugary treats. Moe (and there really is no other way to describe this), lost his shit. I have no idea why. He saw his doughnut and was literally frightened by it. This from the kid who has a reputation for cupcake eating. This was not his first circle of fried dough. But he wouldn't touch it.

I took a little video of this. I am not posting this because I am teasing him, or because I think it is funny. He was clearly really upset and I don't know why. I'm posting this because sometimes, when I say something like "Moe was manic" or "Moe freaked out," it's hard for people who haven't been there to know what that means. Today, this was what it meant. And though Moe has had many meltdowns, I have never seen him like this before.
video
I was not going to force my kid to eat a doughnut (though I did once basically force a date to eat a cupcake) and decided that our best course of action would be to start driving again, which did calm him down. At one point on the way home, Jelly offered Moe a white sprinkle, calling it "coconut." When I asked why, she responded that she knows Moe likes coconut so she called it that so he'd try it. He did. I then handed her a small piece of his doughnut to see if he would take it from her. He took it without incident, though he threw it on the floor.

We got home and I put on the second half of Finding Nemo for Jelly so she could finally see the end of that movie. Moe wanted a snack so I put the rest of his doughnut on a plate and set it down on the table. He looked at it, touched it, and then devoured the whole thing.

This is the thing about autism, or maybe just about Moe. He is unpredictable. I can do everything "right." I can create my "I can!" network, and I can presume competence and I can read blogs and watch every video of Carly and Temple and everyone else and on any given day, I don't know what will be our undoing. Today, it was a doughnut. But you know what? We got past that moment together. Moe ate that doughnut.

And it was good.

June 10, 2013

Possibilities

I sat on the couch in the mostly dark living room. Blue and green LEDs blinked, indicating our connection to the outside world.

Praying for sleep, I leaned into the couch cushions and closed my eyes, my foot still moving. Up and down, up and down, as I rocked a newborn Moe in his bouncy seat.

I tried to appreciate those moments, but I admit, in the exhaustion, I didn't always embrace the joys of motherhood.

Still, I remember his face. Chubby cheeks and milky smile on a perfectly bald head. His curls would take two years to appear.

On the last day of May, Moe turned six.  I haven't written a blog post since then. I've started many, adding to my ever growing drafts file. I've been busy, yes, but the truth is I can't seem to collect my thoughts enough to know what to say.

Six.

On that awful night a few weeks ago, when Moe screamed and screamed for hours on end, there was a brief moment of calm. Moe was in his room and Jeff was in bed. I went to the living room and sat on the couch. The same couch where I spent hours bouncing Moe. Studying his face. Learning what it meant to be a mother.

Dreaming about his future.

The memory of that time came rushing at me with such force, it was if I had simply dozed off for a moment, these last six years a strange dream that I'd forget once the day began.

For a moment I wished it were so. I allowed myself the indulgence of going back to a time when Moe wasn't struggling. When all the milestones were ahead of him. When I could dream of my future architect or doctor, imagine my feigned horror when he told me he wanted to go to Stanford instead of Cal. When I could wonder what his first words would be. When anything was possible.

The moment passed, and it is just as well. Such indulgences serve no purpose, add no measure of happiness to our lives. Maybe even the opposite.

Moe is six years old. He woke on his birthday with a smile and I gave him cake for breakfast.

He ate the whipped cream off the top and I told him anything was possible.


May 28, 2013

The S-Word


Friday night was one of the worst nights of my life. It wasn't the worst; I was with my brother the night he died. No one was injured (much). No marriages were ended or houses destroyed. But it was a night I hoped would never repeat itself, but has, to some degree, every night since.

I wrote a post about what happened, a play by play of the seven hours that Moe spent screaming. I decided that maybe such detail was better left for a private journal entry. Toward the end of the piece, however, I wrote this:
And this is where I will say what I try to avoid saying. Sometimes, autism sucks. I know that is hard to hear, and I am not trying to offend anyone. But it is our truth right now, and I dare say Moe might agree with me. For some, autism may bring great gifts alongside the challenges. But not here, not today.
I've spent the last few days trying to decide if I would post that statement. On the one hand, I know that many are offended when someone says "autism sucks." On the other hand, it was exactly how I felt.

Autism isn't just a disability. It is the very lens through which autistic people view the world. It is, to put it most simply, their brain. There is no Moe with autism and Moe without autism, so if I say "autism sucks," I am really saying "Moe's brain sucks," ergo Moe sucks. And how could I, as Moe's mom, the person who loves and cherishes him more than any other person in the world, think that, let alone say it out loud?

The flip side of that, however, is that autism is, for Moe, quite debilitating. After all, what is autism if not a disorder? We parents are often criticized for focusing only on the challenges of autism, and not the gifts. But without the disability, what is autism? In other words, if someone had all the "gifts" of autism (say, for example, Temple Grandin's astounding visual thinking skills), but none of the deficits, would she still be autistic? Can you ever separate the person and the disorder? Different people will have different answers to that question.

Moe's autism makes him unable to sleep. It makes him aggressive. It makes him unable to speak or clearly express his wishes, causing immense frustration. I can only guess that if Moe were able to make all of those challenges go away, he would. If behavior is communication, what does his scratching and biting say, if not "this sucks?"

But I cannot say what Moe thinks. I can only say what I think. And I think autism is really, really hard on our family. On days like today, when I've slept only three hours, I love Moe but I do not love autism. The idea that I cannot hold those two opposing views in my mind at the same time is someone else's construct. Not only can I make that distinction, but I do it every single day. I have to.

Scratches from earlier today
I have to believe that it is not him, but autism, that makes him grab fistfuls of my hair at one in the morning. I have to believe that it is not him, but autism, that makes him kick me in the chest when I change his pull-up. I have to believe that it is not him, but autism that makes him bang his head on the hard floor until we're worried he will really hurt himself. 

It is autism that makes him unable to sleep or speak, or use the bathroom, or play with his sister, or go to school. It is autism that makes it so that he can't say "Mommy, I love you."

I have to believe that he would if he could.


Because that is how I keep doing what I'm doing. That is how I get up every morning no matter how little sleep I've gotten and give Moe a hug and a kiss and get to work helping him be everything he can be. That is how I keep moving forward, fighting every single day for more for him, for more than just "appropriate." That is how I live in a house you wouldn't believe, with locks on every door, unable to even have curtains because Moe has pulled them down. To live in constant fear for his safety, now and forever. 

If I am going to be able to love Moe and fight for him, I need to be able to, once in a while, shout to the universe that "autism sucks!" and not be filled with guilt that it must mean I don't love my child. Because I do. Some days, that love is the only thing that keeps me going.

My beautiful boy

I am moderating comments, so yours will appear after approval. As always, respectful disagreement is welcome.

May 21, 2013

2013 Update

Oh, twenty thirteen, it's been quite a year so far. Time flies when you're busy, even if you're not always having fun.

I'm coming down from a few busy months, starting with my birthday weekend in San Francisco, followed by my trip to San Diego with Jelly, then her birthday, and peaking on Mother's Day with Listen to Your Mother. It all came to an exciting conclusion last Friday when I had all four of my wisdom teeth pulled.

At the beginning of the year, it all seemed so far away, and now here we are. One more month and the year will be half over.

This time last year, we were right in the middle of some nasty IEP meetings. And although that was a very tense time, and meant a significant change for both of us, I will never regret pulling Moe from school.

That decision doesn't exempt us from IEP season, however. Because this year would be Moe's third since he started school, he was due for his triennial assessment. For those of you who don't know, while a new Individual Education Plan (IEP) is written every year, a full assessment is generally done every three years. Moe's first with the district was when he left early intervention, funded by the regional center, and entered our district's autism preschool special day class.

The assessment started last week, and involves several standardized tests, questionnaires for me, an OT assessment and some observations. We know the people doing the assessments. They are kind and smart, though seeing them again has brought up some pretty strong feelings.

At the end of the assessment, we will have an IEP meeting. The district will set goals and make some offer of services. We still feel pretty strongly that a classroom environment is not appropriate for Moe right now, but we do want him to return to school eventually, so we continue to go through the process.

Moe turns six next week. We won't have a party, but we will have cake. I will try to make it a special day for him. I am trying not to think about what might have been. How, in another version of our life, he might be finishing up kindergarten. That we would be planning summer vacation and choosing a camp.

Instead, I will continue putting one foot in front of the other, and start thinking about what the second half of the year may bring.

May 19, 2013

Lucky

Every few days I walk the perimeter of our backyard. It is a nice yard, not too big. It is a simple rectangle with a patio and a lawn. I can see the whole yard from the patio, not typically the kind of property that would need someone to walk its perimeter.

But I do. I walk the perimeter checking the fence. I make sure every board is in place, that no new gaps have appeared since the last time I checked, just a few days prior.

Because one time, one of those boards was loose. Moe walked by, and it must have tipped over. He walked right through it into the neighbor's yard.

He wasn't scared. He wasn't escaping anything. He was just curious, saw an opening and walked through.

I didn't see him go through the fence. I was there in the yard with him. He was swinging, and I looked away. Maybe there was a bird. Maybe I stooped to pick a weed out of a crack in the patio or swat away a bee. When I looked back up the swing was going, empty, like a scene from a stranger danger PSA.

"Moe?" I called, peering into the playhouse, the one spot he can hide in our yard. He wasn't there.

I don't know what made me check the fence. But I saw the hole. I rushed through, thankful that I was able to fit. Moe was right there. I grabbed him (and our dog who had of course followed us through), my heart pounding, and ran into the house. Locking the door safely behind me.

I was lucky. Moe was there. He was right there.

Moe was lost once other time, at school. They messed up, two aides each thinking the other had him. He popped into an open classroom. He could have been anywhere, including the creek they walked to every Friday afternoon.

Again, were were lucky.

Moe has been lost twice. Twice found. But I have nightmares about losing him. Shouting his name as he walks away. Begging people to grab him while no one listens.

We recently trimmed some branches from our grapefruit tree. Moe has learned to climb the tree, and as the branches grew closer to the neighbor's fence, I could see him peering over the top. It wouldn't be long before he decided to leap right over.

We are diligent. We are paranoid. And yet, we are human. Just the other day, Moe and I were in the yard. The dog started scratching at the neighbor's dog through the fence. I rushed over to stop her, knowing that the scratching could compromise the fence in that spot. When I looked up, I didn't see Moe. He was fine, just in the opposite corner of the yard.

This week, we lost several beautiful children (in unrelated incidences) who wandered from safe places and drowned. My heart breaks for them, for their families and caregivers. I will not dwell on the people who have chosen judgement and blame. I do not know what happened, but I do know how it could happen. How it has happened. To me. To Moe. Unless you've lived it, you do not know.

We are diligent. But we have also been very lucky.

 

May 16, 2013

Finding Inspiration


 On Sunday, Mother's Day, I had the most amazing experience. I participated as a cast member in the San Francisco Listen to Your Mother show. Fourteen of us took the stage, sharing our stories to give "mother's day a microphone."

I live in San Jose, about an hour's drive south of San Francisco, and was full of nervous energy as I drove north on the 101 freeway. I psyched myself up on the drive, talking to myself out loud. I practiced my piece, especially the last line. I didn't want to get choked up on stage. I looked for messages of inspiration in the billboards. One was for an upcoming movie and stated "It's going to be epic." "It is!" I said aloud. Another, for a local hospital, pictured an enormous baby fist. I threw my fist in the air and gave that baby a fist bump as I drove by. "Bam!" I said. "Let's rock this thing."

The last time I was similarly inspired on the freeway was in the mid 1990's. I was a couple years out of college, driving from Berkeley to Palo Alto for a job interview. I drove, south this time, through the tech corridor. It was an exciting time in Silicon Valley, and I felt that entrepreneurial spirit building within me as I passed billboard after billboard for tech companies quite literally creating the future. I got the job that day, doing tech support for a startup called WebTV, despite my complete lack of technology experience. It was a defining time in my life.

Sometimes that drive down 101 seems a lifetime ago. I've been a stay at home parent for six years. We are coming up on the four year anniversary of my son's autism diagnosis. I recently had a round number birthday. It is easy to get bogged down in this life of special needs parenting, to focus on getting through the day and forget to be inspired. To feel like the best is behind us.

Listen to this mother when I tell you it is not. There is something about standing on a stage in front of 300 people and baring your soul. I owe so much to the producers of the San Francisco show, who put their faith in me. They allowed me the opportunity to not just share my story, but also to prove to myself that I have so much more to do. And to the other women in the cast, who shared so much of themselves and reminded me that we can learn from and support each other, no matter how diverse our experiences.

And most importantly, that a good cry, followed by a really great laugh, can get you through just about anything.


Photos courtesy of ZemyaPhotographyVideo from Listen To Your Mother will be available this summer. I will post my piece here in the near future.

May 8, 2013

Rain or Shine

It's been a hard few weeks. Really hard. Moe hasn't been sleeping. He's dysregulated and aggressive. He bit 3 people and has scratched the hell out of my arms. On top of that, we got the final report back from his latest psych assessment. I won't bore you with the details but it is always hard to see the numbers that compare your six year old to a toddler. These numbers aren't supposed to bother me any more. But they do. Of course they do.

There were good things too. Jelly turned four, and we had her birthday party. I decorated her room with fairy decals while she was at school. I made cupcakes for the party. ("How to Make Fairy Cupcakes, Part 2" will be coming soon. See here for Part 1.) She had a great time. But Moe had a hard time at the party, and Jeff spent much of the time managing him. It put a damper on things. I try not to be resentful.

We had our last rehearsal for Listen to Your Mother and it was nothing short of wonderful. The show is going to be great. I'm getting more blog traffic and opportunities since being selected as one of Babble's Top 30 autism blogs of 2013. And yesterday, I had a job interview. I'm excited about it. I don't know how it will go--it is always so hard to interview over the phone--but it made me realize I do have choices. There is more for me yet.

This autism gig is hard. But as I think about many of the good things in my life--friends, this blog, the opportunity to read something that I wrote in front of a live audience--I am realizing that many of these are not despite autism but because of it. I focus a lot on the opportunities that Moe, or more accurately, Moe's disability, have taken away from me and my family. But there are good things too.

Jeff and I had the opportunity to see David Sedaris live on Monday. Moe was melting down as we were leaving and I was stressed about leaving him, even in the very loving and capable hands of my BFF. I wasn't worried about him as much as the idea of putting her through one of his meltdowns. He was overtired, so we gave him his melatonin early and went. We needed to go out together, to do something normal. We needed some fun, to prove to ourselves that even when things suck, we can still go out and laugh. It felt good.

When Moe is on a down cycle, there isn't much we can do but ride out the storm. It's an appropriate analogy, because much like the weather, these cycles will always come and go. Sometimes I don't recognize myself anymore, I am so steeped in this life of special needs. But I am slowing figuring out how to carry on, to reclaim myself, rain or shine.

May 2, 2013

How to Make Fairy Cupcakes, Part 1

I have a few talents. I can write. I am a decent cook and baker. I have a pretty good eye for interior design. I am not, however, crafty.

Every so often, however, I decide to try to create something. Usually I am able to overcome this urge by buying something on Etsy or distracting myself by taking care of one or even both of my children. But sometimes, against my better judgement, I make an effort. Today was one of those days.

Maybe it is because I've been feeling guilty having to miss the birthday celebration at Jelly's school. Or maybe because this particular project seemed so damn easy I couldn't possibly screw it up. Regardless of whatever misguided reason I had, I went for it.

So now I give you Part 1 of how to make fairy cupcakes:

Cupcake Toppers


Do make sure you know your daughter's preferences: chocolate cupcakes, green frosting, Tinkerbell toppers.

Do create Pinterest board for Tinkerbell cupcake ideas. 

Do not take daughter to party store where she can change her mind seventeen times. Do buy perfect stickers for cupcake toppers. Do talk daughter down to one package of additional fairy puffy stickers and Tinkerbell napkins that you weren't going to buy because the bounce house place provides everything but if it will make her happy for God's sake I just want to get out of here.

Do plan out schedule: Tuesday: start toppers. Wednesday: finish toppers. Thursday: make one batch of cupcakes. Friday: make second batch of cupcakes. Friday night: have friend come over for drinks and frost cupcakes.

Do feel good about yourself when you manage to put on stickers and cut squares out of paper. You are a crafting rock star!

Do not forget to take pictures along the way, so take a hastily assembled one after the fact. 

Do not forget schedule the next day and decide to watch TV instead.

Do use son's time with ABA therapist to finish toppers, putting self back on schedule.

Do assemble craft supplies: previously created stickers on paper, toothpicks, tape and glue.

Do use tape to attach toothpick to back of card, making sure fairies head will be pointed UP. Be proud of self for thinking of this in advance.

Do immediately text friend to get opinion on whether each topper should have the same fairy on both sides of the topper or two different fairies. Obsess over whether it will be better for four year olds to have two fairy options per cupcake or if they should just stick to one, limiting the number of opportunities for each kid to have any given fairy. Friend says one fairy per cupcake. Go with that.

Do quickly count and make sure you have an even number of fairies. 

Do use Elmer's white glue to attach the two matching fairies back to back, again ensuring heads remain facing up. Do remember how it is impossible to do anything with Elmer's white glue without getting it everywhere.

Do not get sidetracked covering fingers in glue and then peeling it off.

Do line up completed toppers side by side, so they won't stick to each other. Do take photo. Do not explain that they are on top of a plastic bin containing the Little People farm because that is the only flat surface in the house that does not have a pile of junk on it. 


Do edit photo to be facing correct direction.



Do not run out of glue.

Do not use a glue stick, as you will find that it is not sticky enough.

Do not find another unused bottle of glue, attempt to use, and find out that the glue has somehow separated like an old bottle of ketchup, leaking a clear watery substance before white gluey part comes out. This glue will also not stick.

Do take to the internet to complain about glue battles. Friend will suggest tape.

Do remember you have double stick tape. Do not take out tape to realize that dispenser has broken. Do get scissors so you can cut pieces of tape.

Do wish that you had just done this from the start.

Do not run out of regular tape before finishing toppers. Do count how many you've done and realize that if the adults don't have toppers you've made enough. Do realize that the pink Tinkerbell, which is probably the one daughter will want, hasn't been made. Do find another roll of tape in daughter's craft box. Do sigh in relief.

Do not let double sided tape attach onto itself and be completely unable to find starting point. Do use extreme caution when using scissors to cut into double stick tape roll to make a new starting point.

Do take pictures of final product and declare success!


UP NEXT: Making the cupcakes!

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