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 needed...help!

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.