Thursday, July 26, 2012

The Specter of Residential

Some things we just don't want to hear.
Photo by Ambro

Last week, we had a meeting with the Wrap team and E's ABA therapist.  We went over the current plan and schedule and discussed what was working and what wasn't.  Mostly what wasn't.

We've had a few scary instances with E. lately.  These were relayed and discussed.  Each ABA session so far has been one big non-stop meltdown.  It's exhausting.  Appointments are becoming non-stop meltdowns.  We're all tired of walking on eggshells around E.  Sometimes his meltdowns are unpredictable, but usually we know what will set him off.  The reality, though, is that he has expectations to meet, including chores, and life is not one big party where you get to do whatever you want.  Just this afternoon, he threw a hairbrush at my head because I reminded him that there was a load of his laundry that needed to be put away.

Residential treatment was brought up at the meeting for the first time as something that could be a real possibility.  Even though I know that it's necessary for some kids, the idea is terrifying to me.  If it gets so bad that E. has to go into residential treatment, I feel like I've failed.  How many kids come back from residential with real improvement?  It seems like the ones I know of are a lost cause.  I feel like if I send E. there, I'll be washing my hands of him.  I fear the judgment:  "You can't even take care of your own child."  "You sent him away to be someone else's problem."  I would certainly feel that way, so why shouldn't everyone else be thinking it too, even if they are too polite to say it to me?

I don't know how to make this better.  I don't know how to make residential okay.

Wednesday, July 18, 2012

The Bank Incident

Ignorance makes me see red.
Photo by Stuart Miles

The other day I was in line at the bank when the following incident occurred:

At the small play area that the bank provides for kids whose parents are waiting in line a boy about E.'s age was having a full-blown meltdown.  He was pounding his father with his fists while screaming at the top of his lungs and cursing.  The father, who was holding him in a safe hold, looked worn down and exhausted, and it was clear that this was something he'd seen before.  He was also looking around a bit, clearly embarrassed that the other bank customers had to see this.  His three girls that were also there were playing in the area nonchalantly.  They had also clearly been witness to this type of meltdown before.  It was quite clear to me, both during the meltdown and once he had calmed down, that this boy obviously had an autism spectrum disorder.  Having been in that position many times, my heart went out to the poor guy.

This went on for a couple minutes.  Most of the people in the line were averting their eyes and staring straight ahead, obviously uncomfortable.  I wanted to go over to see if I could help, but I was afraid of making the situation worse.  Then, the woman in front of me turned around and said to me, not loudly, but clearly, "I guess some people just shouldn't be parents, huh?"

I immediately felt my heart speed up and my adrenaline kick in to high-gear production.  I suppressed an urge to hit this ignorant woman, and instead told her that I was pretty sure the boy was autistic, that my own son was autistic, "so maybe next time you should just keep your opinions to yourself."  My voice and my hands were shaking, and I'm sure she could feel my interior rage rolling off of me in waves.  Her eyes got wide, and she quickly turned around and didn't say another word.

The woman behind me placed her hand on my shoulder and said, quietly, "Good job."  I'm so glad she was there because I was nearly in tears.  I needed to get this check cashed, but more than anything, I wanted to run out of there.

I wasn't just angry because that horribly ignorant woman said that.  I was angry because I wondered how many others in that line were thinking the exact same thing and simply had the common sense not to say it.  It also confirmed my fear that people were indeed thinking that when I find myself in that same sort of situation.  I wondered what it was about me that made me look as if I would appreciate a comment like that.  Was it because I kept sneaking peeks over to the family?  Was it because of the worried expression that was probably on my face?

I was also angry with myself because I didn't have the guts to go over there and help.  For all I know, he might have appreciated a friendly face who had some experience with the same situation.  I don't know, and I never will know.

Would you have gone over?  What was the right thing to do here?

Sunday, July 15, 2012

Alphabet Soup Mama?

Books have always made more sense than people
Photo by graur razvan ionut

I was perusing this month's copy of Autism Asperger's Digest, an excellent magazine that I highly recommend (and not just because I sometimes write for it!).  While reading, I came across an article that provided me with a great deal of food for thought.  The article was about girls with Asperger's syndrome.

I'm really only familiar with boys.  According to the article, girls usually go undiagnosed until much later because they present so differently than boys.  As I read through the article, my eyebrows continued to raise until they were practically crawling into my hairline.

This article could have been talking about me.

  • I observe other people to figure out what to do in a given situation from an intellectual standpoint.  (I often fail or miss the point, by the way.)
  • I learn to imitate other people.  You should have seen me in high school.  
  • I was an avid early reader.  I read at a 12th grade level in the 2nd grade.  Yes, I was tested.
  • I wrote my first piece of fiction in the 1st grade.  
  • I was held back in Kindergarten because of immaturity.  I could already read, though.
  • I'm fairly sure my parents would agree that I was quite pedantic as a child.  I still am, really.  As evidenced by this post.  
  • I did not have many close female friends until about the 7th grade.  I usually played alone or stayed in with a book during recess.  I was much closer to my teachers than to my fellow students.
  • I remember my 4th grade teacher showing me a trick so that I would at least look like I was making eye contact.  (Stare at the point directly between someone's eyebrows.  It looks like you are looking in their eyes.) I still use this tactic.
  • I collected model horses, but I didn't really play with them.  I did, however, line them up very carefully and created labels for where each horse should go.  My mom was pissed when I wrecked my desk doing this.  
  • Until I had kids and it became impossible to maintain, I alphabetized books, movies, and CDs and organized them according to genre.  It still annoys me that my stuff isn't alphabetized, but it's a pointless process with the kids around.  
  • I never knew what was cool or popular.  Never.  That stuff was completely beyond me.  Even when I tried, I would always miss some crucial point.  I still do.
  • I know a ton of random information on a ton of random topics.  It makes me a great content writer, though.
  • I was freaking awesome at math up until about precalculus.
  • Most of my romantic relationships have been utter, horrifying, horrendous failures.  I can beat you at pretty much any game of "who has the worst ex."
  • I can be incredibly passive aggressive.
  • My parents will know exactly what this means:  "... she has almost two personalities:  the meek school girl and the defiant, argumentative, and emotionally volatile daughter at home."
That's an incredibly long list and these behaviors are taken straight from the article.  I'm not going to pursue diagnosis or anything like that, but it certainly makes me wonder.  

Saturday, July 14, 2012

Summary of the Week ending July 13, 2012

Okay, so I'm a day late....

Ready to get into some serious science?  What if a medication already exists that could change the circuitry of the brain enough to prevent the symptoms of autism?  Would you or wouldn't you?


The fallout continues from last week's 50 Cent debacle.  The rapper decided to "apologize" (if you could call it that), but one of his events was pulled anyway.  Here's the thing:  When autism affects 1 in 88, maybe you should realize that chances are good that one of your promoters or supporters probably loves someone with autism and doesn't take kindly to nasty, ignorant remarks.  Food for thought....


This is one of those stories that makes your eyes sting with tears.  What a wonderful thing this family has done.

Sunday, July 8, 2012

The OT Report

Integrated Listening System Therapy
Image by zirconicusso

A month or so ago, we had E. evaluated at MOSAIC, a physical and occupational therapy center in Seattle.  He has a number of physical issues that we've been concerned about for quite some time, and it was thought that they might be related to some of his other sensory challenges.

Last week, I finally received the full report.  It was huge and heavy, and I was worried just looking at it.  After reading through it, I felt like I had gone a few rounds in a boxing ring.  I felt overwhelmed, blindsided, and frankly, kind of sick to my stomach.

Nothing works the way it is supposed to on this kid.  Nothing!  How can everything be so goofed up?

Some of the highlights from the report:

  • He has very low muscle tone, resulting in little trunk strength.  This is one of the causes of his difficulty with bicycle riding.  This is also reflected in his clumsiness, awkward gait, and even his difficulty sitting upright for any length of time.
  • He has something called asymmetrical tonic neck reflex.  This is a reflex that is supposed to go away when you are six months old, and it causes a lot of problems if it doesn't.
  • He relies almost entirely on visual stimuli for his balance.  If he closes his eyes, he basically falls over.  My mother hypothesizes that this is why we have such trouble getting him to wash his hair.
  • He has severe deficits in practically every sensory category.
He'll be starting occupational therapy in August.  He is supposed to go twice weekly, and he's going to be using a program called integrative listening system (iLs) therapy.  This is a great blog post on the subject from Hartley Steiner, over at Hartley's Life with Three Boys.  I'm very interested to see how the system works, and hopefully it will make his life easier.

Have you had experience with this type of therapy?  What has your overall experience been with occupational therapy?  I'd love to hear your stories!  

Friday, July 6, 2012

Summary of the Week ending July 6, 2012

While Alphabet Soup was on vacation last week, one of the biggest stories of the year that could potentially affect Alphabet Soup families came down.  I'm speaking, of course, about the Supreme Court ruling in favor of the Affordable Care Act.

As expected, every group immediately chimed in with their opinion as to whether this was a good thing or not.    Here's my take away:  The ACA isn't perfect.  I don't think any perfect healthcare option exists.  I do think it's an improvement over the current system.  Do I think this way because I personally benefit from it?  You bet I do.  If you are the parent of an Alphabet Soup Child, you are going to benefit from this act because of one very important change that it brought about.  Your family can no longer be kicked off of insurance because your child has a pre-existing condition.  Your family can no longer be denied insurance because your child has a pre-existing condition.   These two points are so fundamentally crucial to Alphabet Soup parents, I just about want to shout them from the rafters.

Here's what other special needs websites are saying about the ACA:

The Autism Society
Autism Speaks
Easter Seals
The Special Needs Network

What is your takeaway on the Affordable Care Act?  I'd love to discuss it in the comments or on Twitter or Facebook.


Other stories in the news:

One big story making the rounds, especially in the autism social network community was 50 Cents' tweet insulting someone by saying they looked "autistic."  The community was immediately up in arms, with boycotts and hashtags flying, demanding that 50 Cent apologize for the tweet, with autism advocate Holly Robinson Peete leading the charge.  I hope that I never have to see the day when "autism" turns into the new "r" word.

The research department of my hometown hospital Seattle Children's published a study providing evidence that autism is the result of a gene mutation.  The mutation can lead to a variety of disorders, including megalencephaly, cancer, and epilepsy.  

Thursday, July 5, 2012

Alphabet Soup Child is on Facebook and Twitter!!

Come have some conversation with Amelia and Julia, your Alphabet Soup Bloggers!!

You can find us on Twitter as @ABCSoupChild

and make sure to like our Alphabet Soup Child page on Facebook!

We want to try to keep up with the latest developments in the worlds of our Alphabet Soup families, and we would love to get to know you better!

The Daily Schedule

We recently started Applied Behavior Analysis with E.  From the first day, the therapist identified that E. needed to be able to follow directions without melting down.  (Kind of a "duh" moment for us...)  E. is extremely good at avoiding activities that he doesn't want to do, and once he has slipped into "meltdown mode," it's challenging to get him back on Planet Earth.

After three sessions that basically consisted of the therapist trying to get E. to participate in family life and E. having a meltdown for almost the entire session, the decision was made to create a structured schedule for the summer that includes time for chores and daily living activities with built-in natural rewards.  I know that E. can flourish with this type of schedule; I've seen him do it when he was at Children's.  I've thought that E. would actually do really well in the military, except for the whole shooting people with guns thing.

On Tuesday, we sat down with our Wraparound parent partner and hammered out a schedule for the summer:

8:30 Take medication, feed cat, feed fish

9:00 Breakfast

9:30 TV time

10:30 Book time

11:00 Clean up and chores

11:30 Lunch

12:00 to 5:00 Free time. May use one hour of TV and play outside, as long as chores are done.

5:00 Help with dinner prep

6:00 Dinner

7:00 Kitchen cleanup

7:30 Room pickup and inspections followed by bath/shower time

8:00 “Simpsons” if room is clean and shower is done

9:00 Bedtime

We start implementing the schedule today.  I'm suspecting that we are going to have some resistance at first, but I'm hoping that E. will adapt to it.  I'm also concerned about days that don't follow the schedule, such as when M. has her speech therapy on Tuesdays and E.'s own appointments (which might be increasing drastically in August... more on that later...).  Once a schedule is set and details are hammered out, he tends to fixate on them.

I think E. will like having set times for each item.  One of his first questions when we have a potential event is "What time will it be?"  If I can't give him an exact time for when something will occur, he gets extremely agitated, sometimes even to the point of melting down.  "Later" is never an acceptable answer; neither is "sometime this afternoon."

I'll update with how it goes....

Wednesday, July 4, 2012

The New Friend

Photo by twobee

We just recently moved to a new complex on the other side of town.  While E. usually has some challenges making friends, he had a few kids to pal around with at the old complex and was worried about whether he was going to find anyone to play with at our new home.

A few days after the official move, E. asked if he could go out to see if he could find some kids to play with.  I didn't see a problem with that, so I told him to check back in an hour.  When his hour was up, he came back bursting with excitement over his new friend.

I was happy to hear it, and for the rest of the day, all I heard about was how cool Luke was and what Luke was into and what they had done together.  I was looking forward to meeting Luke, this child who was so quickly accepting of E. and all his quirks.

A couple days later, E. came back with Luke's dad's phone number and a request that Luke come over and play.  I was impressed that he had thought to get a phone number and called Luke's dad, ready to meet E.'s new best friend.

It turns out that Luke is not even five years old yet.  E. will be twelve in just a couple weeks.  I was disheartened and felt like I should have known.  E. doesn't get along well with kids his own age and typically prefers the company of kids who are much older or younger.  It's a pretty stereotypical behavior for kids with HFA, and it sometimes hurts to see E. behaving in "textbook" fashion.

I explained the situation to Luke's dad, who also didn't understand why E. would want to play with someone so much younger.  He was understanding and even walked Luke over so that we could meet.  Luke and E. played together well, even including little sister in their games (Luke is, after all, much closer to her in age).  Occasionally E. was disappointed when Luke was unable to follow along with some games and wasn't interested in looking at items through microscopes, but they seemed to have fun.

Watching them together, I completely understand why E. would seek out a friend like Luke.  To Luke, E. is the cool, older kid who takes the time to show him neat things.  He admires E., and he doesn't see the differences the way a child his own age (or older) would.

Tuesday, June 19, 2012

Advocating without screaming.... Tips on Advocating for your special needs child

As a parent of two special needs children, one word I came to learn quickly (besides the words autism, stim, inflexible, regulatory, and vodka) was the word "advocate." When I used to hear the term "advocate," it would conjure up the perceived image of a crazed person screaming with a passion, waving pickets on causes they stood for, and persevering until their voice was heard. Now, just insert me in the place of the crazed person and change the pickets to IEP's or insurance bills and you could very well have the image of a day in the life of a special needs mom.

With my cause at hand, I set out on a mission -- to be the voice for my two "sliding under the radar" special needs children, to help others see my kids' unique needs, and rally the support for our autism and schooling journey.  When my eldest was in 1st grade and falling drastically behind academically, we observed that he was just not getting the individual support and allowances he!

After a few months (ok, maybe more like a year) of advocating, I found myself not really getting through or making much change. Really was I speaking another language? Why was I not being heard? Maybe I needed to scream louder or wave more studies in their faces? ...Isn't this advocating? 
But as it turns out, most people don't like being screamed at or being told what they are not doing well...shocking, hey! What I thought was advocating and helping my child was in fact starting to do more damage than good. Instead of  having help and support, I found myself alone. Oh no, had I become "that mom," the one who makes the school principle run for the closest door or that leaves the therapist rocking in a corner with a stress ball (sorry, Dr.R., but I wouldn't blame you!)?

After realizing that this advocating thing was pretty much a new language to me, I decided to (besides turn down the volume) start asking questions and learn how to better communicate, build relationships, and learn the system -- whatever it took to be a better advocator and ultimately get the help my boys need.

Tips on advocating for your child...

  • It's not only knowing what to say, but how to say it! Keep emotions in check and show a forceful calm.
  • Learn about how the school system works, especially the hierarchy and the order of who to speak with first.
  • Understand your rights as a parent, as well as the rights of your special needs student. 
  • Focus your point to make it clear and concise, don't tackle too many fights at once. Be effective.
  • Ask meaningful questions. IF you can, let them be the ones to offer services and come up with solutions.
  • Cite research, studies, data, and anything that can help back up what you are advocating for.
  • It's OK to disagree/not approve with what the school suggests as appropriate. Know your options.
  • If it comes to heads, breathe, stay calm and smile! (particularly hard at times)
  • Don't be afraid to be heard! If they are not listening, keep going to higher powers (see below).
There is so much info just on your school district's website when it comes to student/parent/teacher expectations. It is the collaboration and understanding from all those involved. Have a passion and respect with a somewhat unemotional response, and maintain one's self. Yikes, even as I type this, I know I am not that person; it has taken a lot to get me to the point where I don't cry in IEP meetings anymore.

At the end of the day, advocating is a fine line; after 6 yrs of working with the school system for my kids, I am still learning the balancing act.
  • If you scream too loudly and you are the pushy, emotional, and unrealistic parent.... that will inevitably put everyone on their defenses and off side. 
  • Or if you talk too quietly and are too afraid to rock the boat, your voice will not be heard and you won't be taken seriously or given the help you need. 
I tell myself, advocating needs to be delivered in the same way we talk to our children... We yell we get a tantrum back, too quiet we are not listened to!

Some useful powers to have in your pocket when you are not being heard and you have tried all that you can with the school and district levels directly:

Office of the Education Ombudsman - Resolve complaints, disputes, and problems between families, students, and K - 12 public schools in all areas that affect student learning. Based in WA, they work with families all over the country as they are the only office in the nation.

Office of the Superintendent of Public Instruction - (OSPI) is the primary agency charged with overseeing K-12 public education in WA state.

Other useful contacts: your child's therapists, private Educational Consultants, your local PTA, Superintendent, school board, state reps...Speak up!

It's an ongoing mission playing advocate for your child, one that can be full of reward and support. Don't give up, ask questions and remain positive for the right outcome!

Who have you found to be an effective ally in your advocating efforts?

Sunday, June 17, 2012

Giving Alphabet Soup Kids Responsibility

Coming soon.... E.'s snack shop!
Photo by Stuart Miles

My son's therapist is constantly pushing for him to have more responsibility.  She believes (and I agree) that he needs more opportunities to rise to the challenge.  She wants to see this in his home life and at his school.  At an IEP meeting, she advocated for him to be given small tasks around the school (like delivering messages to teachers and setting up for science classes).  The goal was to make him feel useful and productive.  He really thrives on praise, and, unfortunately, he just never seems to get that much of it.

The tasks at school never seemed to pan out, and it seems like whenever I try to give him responsibility at home, he is happy for awhile, then starts to melt down over it.  Take the fish tank.  He desperately wanted a fish tank, and his grandmother bought him a 10-gallon tank setup and gave him a gift card to Pet Smart to buy fish.  We had a "discussion" about it this morning because he has started forgetting to feed the fish and turn off the light at night.  Of course, the discussion was mostly me lecturing him while he squealed in anger at me.

I hate having discussions with him.

At his last appointment with his therapist, she came up with a rather unique way for him to learn more responsibility.  The office has a little snack shop that has fallen into disuse.  She is having him revamp it and turn it into a small business project.  That's right -- my son is becoming an entrepreneur!  She gave him $40 as a start-up loan and promised to check in with the others who share the office to get a list of what they would like to see in the shop.

This morning I received the list, and I will go over it with him this evening to come up with a list of supplies to get from the store and determine how he can get the most bang for those 40 bucks.  We'll go shopping for his supplies this week.  Maybe this weekend he can get some "angel investors" from the grandparents.

I think this is really a great opportunity for him.  He is absolutely thrilled by the idea (plus he gets to keep the profits after restocking and paying back the loan).  It's a good, simple introduction into the business world and managing money.  It's a reasonable level of responsibility, and if he feels overwhelmed, he can walk away from it.  It's a math lesson.  It's learning about supply and demand.  It requires organization.

I think this is brilliant, and I will keep you posted on how it turns out.

How do you give your Alphabet Soup Child responsibility?

Friday, June 15, 2012

Summary of the Week -- New Feature!

Alphabet Soup Child is introducing a new feature to the blog, beginning this week.  "Summary of the Week" will appear every Friday morning.  It will be a brief rundown of news stories and other items related to our alphabet soup children that just happened to catch my eye during the week.  If you have any interesting news stories to share, please add them into the comments!  Also, feel free to nominate stories/blog posts/anything you think our readers would be interested in.

Imaging studies question connectivity theory of autism

This is a story about advancements in understanding autism using MRI brain scans.  It's a bit science-y, but I found it really interesting.

Age at Diagnosis of Autism Spectrum Disorders

This is a study that was done to learn more about how the age of diagnosis affects kids with autism.  The study also identified a significant problem in getting a timely diagnosis in minorities.  

CD Sweep:  Benefiting the Autism Science Foundation

Trying to clean out your clutter?  Here's a novel way to clear out your CDs and DVDs (that you've surely converted to digital by now) and do a good deed all in one swoop.

Freezer malfunction thaws 150 brains at Harvard research hospital

This was an unfortunate situation that is going to seriously set back autism research. Why was there no back-up system?  You can also read the letter by Autism Speaks with all the details.

dear you

And, finally, a blog post that every single Alphabet Soup parent should read because we all need this daily reminder.  

What were the biggest stories for you this week?  

Sunday, June 10, 2012

Success at the School District

Sometimes all you need is a win.
Photo by David Castillo Dominici

I know that I am very fortunate to live where I do, and I’m also fortunate enough to have a good rapport and relationship with the higher-ups in my school district.  Thanks to my work as a freelance writer, I’ve had the opportunity to sit down with the director of special education at the middle school level and discuss, as neutral colleagues, the role of the school district when it comes to preparing IEPs, monitoring results, interpreting those results, and finding ways to work around legal and financial barriers.  Thanks to this, I feel like I have an understanding of what is going on behind the scenes and behind closed doors. 

I also feel like, thanks to these conversations, the people who make the decisions view me as someone whom they can trust and not a stressed out parent who is likely to start yelling and demanding the impossible.  Putting aside my “parent of special needs child” hat to have these conversations has proven not just helpful when gathering information for articles, but also information for myself that I can use to help E. get the tools he needs to be successful.  There’s a mutual respect there, and I am extremely grateful for it.

I think that respect, along with my own tenacity and assertiveness, had a lot to do with what transpired this past week.  For quite some time, we’ve been discussing the possibility of a move to a therapeutic school environment for E.  Of course, getting the school district on board was proving to be challenging, considering that they would have to be the ones paying for it.  As usual, it had to be proved that E. was “failing” in his current environment; we would have to try pretty much any practical solution before this kind of option would be available. 

We continued to document data.  One of our biggest allies turned out to be E.’s para-educator, who collected tons of useful and relevant data, much of which leaned in our favor.  When E. began responding well to an incentive program created by his case manager (and one of his favorite teachers), we put the therapeutic placement option temporarily on hold, but it was never completely off the table.

Last Monday, I received a phone call from Dr. R., the director of special education.  She was calling to give me first word of a new program that was going to be implemented next year, specifically to help the kids who were in E.’s shoes.  A classroom was being set up at one of the middle schools that would serve as “home base” for the eight kids who were going to be the inaugural students in the program.  The classroom would feature a teacher who is a specialist in autism spectrum disorders along with two paras.  Each kid selected for this program was a high-functioning child on the autism spectrum who has been troubled by behavior and other mental health concerns (i.e. the “alphabet soup children” as we like to call them here).  These kids were also believed to have a strong potential for success at the high school and even college level with the right behavioral and educational support in place now.  Each child will proceed at their own pace, getting help as needed, and will learn the curriculum in whichever way best suits their own individual learning style.  Eventually, the goal will be to begin transitioning the kids to the mainstream, even if it’s only for five minutes a day.  They see some kids as staying in the classroom all day and receiving all their instruction there, while others might attend a general ed. class long enough to receive the main part of the lesson and then bring their assignments back to the other classroom to work on them and receive support.

The tools needed for the kids to succeed will all be available.  Items like small spaces or weighted blankets and other items will be necessary for those who need a break.  Computers for doing work will be available, as will hands-on projects to work on math, language, science, and more.  Additionally, part of their daily curriculum will be social skills lessons.

I feel like they brought the therapeutic placement option to us.  I can’t wait to see how E. does in this program, and I’m excited to be a part of the solution. This classroom is serving a crucial need, and I hope that other school districts are taking notice.

Monday, June 4, 2012

Getting to Know Your IEP Team

IEP meetings are not just about the paperwork.
Photo by Luigi Diamanti

When you go to your child's IEP meetings, do you feel like you know the people there, or do they feel like strangers?  Are they, in fact, strangers?

If you've been struggling to get anywhere during your meetings, you probably feel quite a bit of animosity, or even anger, toward the members of your child's IEP team.  Building resentment is not going to help you in your quest to get the best possible placement and education for your child, and lashing out at the team is likely to build resentment on their part as well (sure, they should be professional, but we're all human after all -- which types of people are YOU more likely to want to work with?), and now a vicious cycle has been created, and nobody is managing to get anything done.

To make your voice powerful and heard, get to know the members of your child's IEP team.  Do you know who they are?  Take a look at the back page of your last IEP report.  It should contain the signatures of everyone who was at that meeting.  To follow the regulations set by the IDEA, your team should include, at the very least:

  • You (the parents)
  • One or more general education teachers (if your child is main-streamed)
  • One or more of your child's special education teachers
  • A representative of the school who knows the system and the typical general ed. curriculum (maybe a principal or vice-principal)
  • A person who is qualified to interpret results from school evaluations (typically a school psychologist)
  • Others with specialized knowledge or expertise, if desired (maybe your child's therapist or a professional advocate that works with your family)
  • Your child (if appropriate)
Do you have a face for each of these names?  If you feel yourself starting to grind your teeth just thinking about some of these people, it's time to put your animosity to the side.  You don't have to love these people, but you do have to work with them.  Small gestures can go a long way.  Start up an email conversation.  If you've ever been short or snarky, apologize.  Say you were having a bad day or whatever.  This is about your child, not you, so suck it up.  Ask how things are going.  If you have some ideas, talk about them.  

If you really feel like you aren't getting anywhere, and the team isn't responding to your friendly overtures, work your way up the chain.  Start by contacting the district office.  Find out who is in charge of overseeing the special education program for your child's grade level.  Send an email or call on the phone.  Don't be pushy, be friendly.  Schedule an appointment to talk about what is going on.  If your district has a coordinator to deal specifically with your child's diagnosis (for example, our district has an autism coordinator), this person can also be a powerful ally.  Keep this in mind as well:  There could very well be a good and personal reason why they are working in this particular position.  

The school year is winding down.  Now is a great time to schedule a meeting to discuss the possibilities for next year, review the IEP, and make any necessary changes.  

Thursday, May 31, 2012

Protecting our Alphabet Soup Kids

How prepared is your family for an emergency?
Image by digitalart

Last night I had the opportunity to attend a presentation given by SEPAC, a local group dedicated to educating the community and providing solutions for special needs families.  The presentation was on keeping our kids safe in a variety of situations.

One of the presenters was Shari Badger, the High Risk Population Coordinator for the Pierce County Department of Emergency Management.  Her primary job is to find solutions for people with special needs in times of crisis.

How prepared is your family in case of a disaster?

Emergency shelters often aren't well-equipped for people with special needs, whatever those needs may be.  A child with autism will not react well to the disruption in routine that evacuation to a shelter creates, and a child with a sensory processing disorder may not be able to handle the stress and noise.  Ideally, your family should be able to be prepared to go for at least three days without power and water.

Families of alphabet soup kids will need to take additional steps to prepare for emergencies.  Here in the Pacific Northwest, we aren't prone to tornadoes and hurricanes, but we still get major storms that can knock out power for days and even weeks.  We are also in prime earthquake territory, in the shadow of volcanoes, and many areas are prone to major flooding.  Think about what kind of emergencies are likely in your area and neighborhood when you are making your plans.

Some of the preparations you should be making:

  • Have a "go kit."  This kit should include at least three days worth of the medications your child needs as well as documents explaining his or her condition and needs.  
  • Create a small first-aid kit and keep it in a safe place; a fanny pack is perfect for this.  Try modelling these kits after the "10 Essentials" used by the Boy Scouts.
  • Print up the evacuation document provided by the National Fire Protection Association.  Fill it out and practice walking through an evacuation.  Practice over and over until your child feels comfortable with the scenario.
  • Make sure that your friends and neighbors are aware of your evacuation plans.  Also, you should make sure that your neighbors are also prepared for an emergency.  After all, you may be the first person they come to! 
  • Create a neighborhood emergency team.  Walk through the neighborhood together and make sure everyone knows where the gas lines, fire hydrants, and water shut-off valves are.  
  • Contact your child's school and find out what the emergency plan is. Keep your emergency contacts list up to date and create a "go kit" for your child to keep at school as well.  Restock it if your child's medications change or at least annually.
Creating a plan and rehearsing it with your child empowers him or her to become part of the solution in case of an emergency.  Keep your alphabet soup child from becoming a victim!  

Tuesday, May 29, 2012

Please Take Our Poll!

Image by Danilo Rizzuti

We are working hard behind the scenes to expand and increase the scope of Alphabet Soup Child. Your Alphabet Soup bloggers are Amelia and Julia. As we grow, we are hoping to hear from guest posters who would like to talk about their Alphabet Soup experiences. One way you can help is to answer the quick poll to the right.

Which alphabet soup diagnoses are affecting your family? You can answer with more than one, of course. If your answer is other, please leave us a message to tell us what you are coping with. You always have the option of answering anonymously.

One of our major goals is to make this a welcoming community where we can freely discuss what is happening in our lives, encourage, and support each other without the fear of judgment. We have a lot in common, and there is strength in numbers.

Please let us know if you are interested in guest posting, and feel free to ask questions at any time.

Wednesday, May 9, 2012

The Care of Alphabet Soup Parents

Don't give up on us, okay?
Image by tungphoto

One of the most difficult aspects of being the parent of an alphabet soup child is handling the inevitable isolation and the loss of those moments that define you as being something other than an alphabet soup parent.  Friends may recede as we no longer have the finances to support an active social life, let alone the time.  We may have to give up our jobs if we cannot find a way to work them around our schedule that has become filled with appointments and unscheduled interruptions.  It begins to feel like our lives are fully consumed by our kids and their needs.

Often, these changes can cause misunderstandings and hurt feelings among your friends and family.  Why do you no longer want to spend time together?  What's with all the sudden cancellations and dropped plans?  How come you aren't seen at family gatherings?

It can be difficult to explain, but I will try.

1.  Finding a babysitter has become nearly impossible.  We are trying to be polite and not impose.  We know that not every gathering is "family friendly," and we are attempting to respect that.
2.  Because one parent is no longer working, and thanks to mounting medical costs, our financial situation may no longer allow for "frivolous" activities.  We can't justify a dinner out when the power bill is due.
3.  Even family friendly events may pose a challenge.  Our children are often unpredictable.  We don't know when an outburst is coming, or whether it's going to be a shutdown or a meltdown.  Or we know perfectly well that an outing is likely to be overstimulating for our child and a meltdown is likely.  Rather than expose everyone to that situation, we simply stay at home.  
4.  We may simply be exhausted.  We are tired and stressed out and know that we are unlikely to be pleasant to be around.

You may feel angry about the situation or even slighted.  You might even think of your friend as rude or uncaring.  Please remember:  We have a lot on our plates.  We are trying to do the best thing for our family and for our child.

Here's how you can help:

  • Read up on the situation your friend is coping with.  Understanding what they're going through is the first step toward accepting.  One excellent selection is How Can I Help?  A Friend's and Relative's Guide to Supporting the Family with Autism by Ann Palmer.  
  • Check in with them once in a while.  Silence makes coping more difficult.  Your friend may feel abandoned and will be less likely to come out at all.
  • Talk openly about the situation. It's not a taboo topic, and your friend will feel better knowing there is someone who will listen without judgment.  
  • If you know the child and feel competent doing so, offer to help with respite care.  Don't be vague -- offer a specific time and date.  
  • Continue to extend invitations.  Even if your friend can't make it, the invitation is appreciated.  Be understanding of last minute cancellations.  Unpredictability is simply a part of life for alphabet soup parents.
Alphabet soup parents, what would you add to this list?  Friends and family of alphabet soup parents, what are your questions?  

Saturday, April 14, 2012


Image by digitalart

This morning I came to a sad realization.  My daughter, just shy of four years old, reached a crucial childhood milestone this morning, one that every parent longs for.  In doing so, she flew right past her big brother, who is nearly twelve, and who has not yet mastered that particular skill.  I'm worried as to whether he will ever master it.

While I'm immensely proud of her, I feel guilty telling her so, especially within earshot of her brother.  I tell her good job, and that she's a big girl, and I see him wilt.  The implication, of course, being that if she is a big girl for mastering this skill, he must not be a big boy.  But I can't not praise her, because that isn't fair to her, either.

This must be a crossroads that affects every parent who has an alphabet soup child and one who is not.  The other child masters skills and asserts themselves in ways that the ABC child can't.  It's painful to think of the other milestones that will come and go with my daughter that are unlikely to happen in my son.

In another year, she will start kindergarten.  Knowing her now, she will absolutely flourish.  She has learned the letters and sounds of the alphabet and it's only a matter of time before she makes that one last connection and sees how the letters fit together to make words (I can feel it, it's so close).  Once she gets that, there will be no stopping her.  She loves being read to and I know that once she can read for herself, I won't be able to pull her nose out of a book.  Teachers are going to adore her, and she has the ability to stop and calm down when she needs to.

I see her getting good grades and being recognized with honors, something that never materialized for her brother.  She is highly social and calls everyone, even kids she just met, "friends."  She has no problem going up to other kids and asking them if they want to play.  Her big brother still has difficulties with that.  If they don't, she shrugs and walks away.  If her brother is dismissed, he melts down and cries, not understanding why.

Someday, she will learn how to drive.  Given her brother's tendency to distraction and poor judgment, I doubt he ever will.  The New York Times recently published an article discussing the special problem of learning to drive with a condition like AS or ADHD.   Some of the problems that make this especially challenging are the inflexibility and following rules to a fault that tend to occur with people on the spectrum.  E. is no different.

Someday, my daughter will likely move out and go to college.  I don't see college in E.'s future at all.  Maybe a technical school, but I'm unsure about that. I can't even imagine him at a job.  What if his boss told him no?  Would he melt down and throw a chair?  I just don't know.

This milestone is the first of many in which my daughter will soar past her older brother. I wish I could take away the pain and hurt that I see on his face when he realizes that she has passed him in some crucial way.  That's the worst of it: He knows that he is being passed but doesn't know how to change it.  I don't either.  I don't know if it even can be.

Thursday, March 22, 2012

I'm Tired and I Want to Lie Down

Image by Danilo Rizzuti

Soup of the Day:  PTSD

And not my child's.  Could I be diagnosed with PTSD?

According to this article about the stress levels of mothers of kids with autism, it's highly likely.

When I read the article, I guffawed at first.  Then I thought about it some more.  I thought about the incident that took place on Monday, when I found myself calling 911 because E. was so frighteningly out of control.  He was threatening to kill himself and was fighting tooth and nail to get past me to get into the kitchen and get a knife. I have bruises covering my arm.

I stayed calm throughout the majority of the ordeal (well, as calm as possible).  Once the police arrived and took hold of the situation, I sank onto the couch.  I felt my chest began to contract, I started breathing in gasps, and my hands were shaking uncontrollably as the adrenaline that had been flooding my body took hold.  I felt sick, like I was going to throw up.  Later that night, I was hit with major digestive issues.  According to a quick web search, my tummy troubles were the result of the major adrenaline dump that had occurred earlier in the day.

This is what severe stress looks like.  While not every day is that bad, every day is a struggle.  Every day has some kind of stress attached to it.  From little things like arguing over whether E. had cleaned himself properly to bigger issues like today's, when I was visited by maintenance.  It turns out that E. had been dumping the garbage out by the side of the building instead of in the dumpster.  Why?  It's actually a farther walk to the location where the dumping was happening than it is to the dumpster.  And of course the mess was spreading as birds and scavengers went through our garbage bags.  The guy who visited me was clearly pissed about it. I'm pissed too.  There goes my stress level.

Now I'm trying to work out an appropriate consequence (I'm thinking garbage pick-up this weekend).  I know that there's going to be a fight tonight when we confront him, and I feel sick -- preemptively.

The other part of the article that spoke to me was that mothers of children with autism are interrupted at least one day out of every four, compared to other moms, who are interrupted less than one day out of ten.  It's why I left my full-time job.  How can you keep up a job when you are constantly fielding phone calls from the school or child care?  I'll tell you -- you can't.  At least today I could just stop what I was doing and answer the door.  But trying to juggle constant messages from human resources, write-ups for missed work, the dread of knowing that you have to go speak to your manager because you have to leave for the second time that week...  Constant stress.

I have no solutions.  I try to take care of myself, but some days it has to take a backseat to dealing with all of E.'s crises.  Today is one of those days.  I feel like a mess, but I have too much work to do.  Writing in the blog is my self-care for the day.  I'm hoping to meet up with a friend later, but I may have to cancel, depending on how E. handles the revelation that he's been caught red-handed.

This is my life.  And then people wonder why I'm cranky.

Tuesday, March 13, 2012

On Intuition

The What Ifs can be scary sometimes.
Image by digitalart

Last week my daughter spiked a fever of 105.  I knew she was running a fever, but I didn't realize how high it was.  Every time I approached her with the thermometer, she would fight me like a little wildcat.  By early afternoon, however, she was complaining that her ears were hurting.  She's always been prone to ear infections, and, in fact, had tubes placed when she was just a year old.

I called the pediatrician, but they were unable to see us right away.  My husband and I debated whether we should take her to the Urgent Care to get her checked out.  In the meantime, she went into her room and covered herself in her heavy comforter and fell asleep.  We stood looking at her, trying to decide what to do.  "Take her in," the little voice in my heart said.  "She's been acting listless all day, and she probably has an ear infection.  Take her in now, and you won't have to deal with the ER later."  Alright, alright, I said.

I felt terribly guilty as I extricated her from the blankets, and I couldn't help noticing again how very warm she was.  We got to the Urgent Care and had to wait a bit.  The place was packed.  She leaned against her daddy and looked up at me with bleary eyes.  She looked incredibly pale and fragile.

When we were seen, the nurse performed all the usual checks: height, weight (she's getting so big!), blood pressure.  Then she ran the thermometer over her forehead.  I caught a glimpse of the number on it as she pulled it away.  I did a double take and my jaw dropped.  105.1!  "Oh my god," I said.  "Is that thing accurate?"  The nurse tried it again and got the same result.

The fever finally came down with a good dose of  ibupofen and acetaminophen and a little time.  But my mind keeps going back to that moment where she had been lying in her bed, wrapped up in that heavy comforter. That awful question of what if? dangles.  What if I had just let her lie there?  How high would her fever have gone without intervention?  What effect would the comforter have had?

I brought up the question to some friends the other night.  "Her fever would have broke and she would be fine," my friend said.  "Yeah, but what if it didn't?" I asked.  "But it doesn't matter," she replied.  "You followed your intuition."

That same intuition was what drove me for so many years, trying to figure out what was going on with my son.  I tell the full story here of our attempts to get E. properly diagnosed.  Doctor after doctor, therapist after therapist. Even once we had our diagnosis, we continued working until we felt like we had the best team possible.  Why?

Intuition told me to.  "Something is wrong," the little voice said.  "This isn't typical."  So I continued to search for answers to the questions.  And I always will.

Thursday, February 23, 2012

It's Here! It's Here!

Today I was thrilled to receive a package in the mail containing my contributor copies of Autism Asperger's Digest.  As a writer, this is one of those major moments:  my first print story.

The article is "Scouting with Asperger's."  It tells the story of how E. got involved with Scouts and what a major confidence builder it has been for him.  If your child is interested, consider Scouting.  The article details why Scouting is such an ideal activity for kids on the spectrum.  For more details... you'll have to buy the magazine!

I have to tell you though.  Opening the magazine, seeing my name, reading through my words... this is a huge moment.  I never dreamed I would find myself writing in the niche, for a number of reasons.

My life often feels like it revolves around Asperger's.  I remember reading the book House Rules by Jodi Picoult.  The character of the mother stated that she felt like she herself sometimes had Asperger's because of how quickly it becomes all you can see and talk about.  I know that feeling... well.  Since Asperger's was the reason that I quit the "9-5 real job," I felt some resentment toward it.  I also doubted that I had much to contribute to the conversation that had started long before I arrived on the scene.

Turns out that I do have something to contribute after all.  Yesterday I received one of the most valuable compliments ever when the editor of the magazine, a woman who has read pretty much everything that's ever been written about Asperger's, emailed me to tell me that the article I had just submitted (a piece on advocacy that will run in the November issue) had actually helped her to have the best IEP meeting she had ever had.

This is exactly what every writer hope for when we apply fingers to keyboard.  That our words will somehow make a difference in the lives of those who read them.  That my words could make a difference in this woman's life is a profound moment.  I can't wait for them to be read by others across the nation.  That is why I am here.

Although when I began to write I had envisioned topics that were the equivalent of a slinky black cocktail dress, I find that this niche is really the comfy sweats that I'd much rather be wearing.  The cocktail dress wouldn't have fit right, and frankly, I probably would have looked pretty silly and out of place in the dress.  The sweats rock and always fit right, no matter how frazzled I feel.

Tuesday, February 14, 2012

This is a Strange Problem to Have

The latest passion.
Image courtesy of Wizards of the Coast

So you may recall me mentioning a while ago that E. was starting a new medication, Intuniv.  The first day of the medication happened to coincide with the first day of the Magic card incentive program at the school.  Since that time, about a week and a half ago, E. has been...well, not a little angel, but certainly a lot easier to live with.  He's staying in class a majority of the time.  He's only walked out twice.  For him, that's quite the accomplishment.  Bear in mind that prior to this he was booking out of at least one class a day.  Usually more.

So what is causing the change?  Is it the new medication?  He's up to 2 mg per day now, with a goal dose of 3 mg per day.  Or were Magic cards really the magic bullet?  I simply have a hard time accepting that.  In all fairness, we haven't hit the two weeks that his stepdad and I were betting on.  Things could still go south.  I'm just really surprised by the change.

E. is incredibly excited about the Magic cards.  He sits and plays with them by himself, reading them over and over again and organizing them.  He had Gavin show him how to create a deck and he did so.  He joined a Magic club at school so he can play after school on Thursdays.  Unfortunately, every other Thursday E. has an appointment with Carrie and I can't reschedule it, so he can only go twice a month.  But he's really excited and enthusiastic about it.  Is this just the passion of the month?  Will he be on to something else soon and all of this good behavior be just a short blip?

Here's the other thing I'm worried about:  We have our meeting March 1 to discuss his evaluation and placement.  I'm concerned that the timing of this sudden streak of good behavior is going to screw us over, that he will be evaluated and found to be in better shape than before, that all of our work and planning is going to be for nothing.  He's probably being evaluated in class even as we speak, and the record is going to show him as a little angel, not as the chair-throwing, hitting, kicking, cursing dervish that he's been for the past year. I know he isn't "cured," but if he's having a good month and then the day after the meeting he completely loses it, we have to wait that much longer for the next re-evaluation.  I don't know what to do about this.  The worst thing that can happen is for the evaluator to come back with "he seems fine to me."

Thursday, February 9, 2012

"We Can't Help You"

Image by renjith krishnan

These are words that every alphabet soup parent dreads to hear.  Is their child really that challenging that they've managed to stymie even the experts?

Apparently so.  We were told this last week.  E. has been in counseling for months to help with a specific issue (Soup of the Day:  PTSD).  Unfortunately, the protocol were all developed with neurotypical kids in mind and nobody seems to know exactly how to help a child with Asperger's.

Here's the problem:  The protocol and programs that the counselors follow to treat this issue involving repeated minor exposure (talking about the situation in general followed by talking about what happened to the child specifically) with the idea being that the child's reaction to the trauma will eventually be minimized.  At the same time, other issues such as guilt and anger are addressed and tools are given to help the child cope with those emotions.

E. was having nothing to do with it.  As is usual for a child with Asperger's, bringing it up would cause him to completely fixate on it and it didn't matter what type of technique was used to help him replace the negative and angry thoughts, it would end up in a major blowout, usually involving hitting, kicking and cursing.  His extreme reactions have brought him to the Children's ER twice.  I've been afraid to leave him with the counselor because she is a tiny thing, smaller than he is, and I'm scared that he's going to hurt her.  I'd rather have him pound on me than take it out on her, as painful as that is to admit.  They've actually had to call security before.

So last week, the counselor asked to meet with me and the hubby, without E.  She told us that at this point, she's concerned that continuing to make him come to the appointments is just retraumatizing him, and that's the last thing they want to do.  He has the tools, and when he's not triggered he can tell them to you, but once he's triggered they fly right out of his mind.  She wanted to emphasize that if he wants to come talk to her, she will always be there and available to him, but making him come week after week was not going to be helpful.  She's going to be in touch with Carrie, E.'s counselor for all things Asperger's, and she's hoping that Carrie will continue working with him on the tools, outside the context of the trauma.

I was hoping that this counseling would help him deal with the issue better, but it looks like it's a no-go for now.

Sunday, February 5, 2012

Delving into "Serenity"

Photo by anankkml

I'm not going to go into details, but I was raised knowing the Serenity Prayer.  Not being a particularly religious person, I had about as much use for it as I did for the Lord's Prayer -- namely, it was something memorized and said by rote when everyone else started reciting it.  I never really gave much thought to the words and what they meant, but it stuck, lodged in my brain like the lyrics of some song from the '80s I probably should have forgotten long ago.

Today I was working on my weight loss "homework."  I was writing in my journal, noting the progress I had made.  It took some work, because I had neglected to do it the last couple of days.  I was feeling overwhelmed by life in general and the last thing I wanted to do was analyze it.  But the only way to ride is to get back on that damned horse when he throws you off, so I was determined to get back into the groove.  I thought about what had sent me into this last tailspin.  What was the emotion that I wanted so badly to escape from?

It wasn't too challenging to figure it out.  It was that feeling of complete and utter powerlessness that comes over me when I'm faced with E. and his seemingly insurmountable challenges.  I feel powerless in the face of Asperger's.  I feel powerless in the face of the school system that wants him to fail before he can begin to succeed.  I feel powerless about not having money to simply throw at the problem and make it go away.

There it was, my limiting belief.  "I am powerless."  Okay.  Now, to change it into an empowering belief.  And suddenly, there it was, in my head:  "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."  I suddenly understood every word of that little mantra.  It meant something to me, today, in that moment, despite my previous lack of connection.  

The things I cannot change:
  • E.'s condition(s)
  • The system that the school is trapped in
  • The cost of the programs I want
  • E.'s behavior 
  • E.'s reactions
  • Other people's behavior
  • Other people's reactions
The things I can:
  • How I respond
  • How I deal with the school
  • The level of information I have
  • The level of education I have
  • The steps I can take to learn how to work within the system
  • My own behavior
It's another tool in my arsenal.  It doesn't mean that there won't be any more bad days.  There will still be bad days.  There will still be times when I feel powerless in the face of the challenge.  There are times when I forget to use the tools that I have.  But every tool I add increases my chances of finding the right one for the occasion.

Friday, February 3, 2012

"I'm High-Functioning, Except When I'm Not"

I read this quote recently on a blog. I can't find the blog in question, or I'd link it.  I thought it was the perfect description of my son, E.  Yesterday was a slog, dealing with all the different aspects of the "when I'm not" half.

The entire day revolved around E. and autism.  It was a day when all I could think about was how very much I hate autism and the problems it causes.

The day kicked off at 7:30 am with a manifestation hearing at the school.  This was the result of a suspension following E. kicking his one-on-one para during a meltdown.  We are currently working with his therapist and the wraparound service to try to get him out of the public school system and into a therapeutic setting like this one.  We were hoping to have the opportunity to address that yesterday, but it had to be tabled for another meeting next month.  Instead, I was presented with yet another "incentive plan" to try to entice E. to hold it together for an entire day.  Mr. R. presented it proudly; it was clearly his baby.  This time it was Magic cards.  I'm sure it will work well for a little while, but these things don't last.

I always feel like they are completely missing the point.  It's not that he doesn't want to do well; he does.  It's that he simply doesn't want to be at school and my third period, it doesn't matter what you offer him.  Nothing compares to that need to leave.  Offer him whatever you want, offer him diamonds.  It doesn't matter.

The meeting about placement will be on March 1.  More work and research to do before then.  I've already put together a list about what CHILD can offer that the school district can't.  Guess what?  It's about a mile long.

The next meeting of the day was with Carrie, E.'s therapist.  The hubby and I attended this one (E. was allowed back at school thanks to the results of the manifestation hearing).  We discussed what to do next and where to go from here.  We agreed that intensive in-home support was needed.  We will be asking wraparound to help us get set up with a program called "Imagine."  I can't find the program she's asking about, but hopefully Aja and Jody are familiar with it.  It uses the collaborative problem solving model.

One of the concerns raised by wraparound was that "autism" is not listed as a diagnosis on E.'s IEP.  Asperger's is, as well as the rest of the alphabet soup, but apparently the state considers "autism" it's own separate category.  While Aja thought we should get his class changed, Carrie was concerned that by changing the class we would remove "multiple health impaired" and actually cause problems.  I'm rather confused by this -- the information is conflicting.  I'm also not sure I'm understanding this right:  Can a child only have one class?  Does "autism" cancel out "multiple health impaired"?  What about the alphabet soup children of the world?

We talked about what the future would look like without a more therapeutic placement.  It's an ugly picture.  I believe it would likely involve E. dropping out in the 10th or 11th grade.  If the aggression doesn't get under control or continues to get worse as E. gets holder, Carrie raised the possibility of a future spent in residential treatment.  This was the first time it was said out loud, and it terrified me.  It's bleak.

Next stop for the day was the Children's Autism Center for E.'s appointment with the nurse practitioner who does his prescribing.  We are still trying to nail down the sleeping component.  His trazodone was increased to 75 mg at bedtime.  We are also adding a new medication to the mix:  Intuniv.  We'll see how it goes.

By the time I got home, I was completely exhausted.  I felt hopeless, helpless, powerless.  What if everything I'm doing is just spinning my wheels?  What if the end result is going to be the same, regardless of how hard I fight?  But what else could I possibly do?