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?

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?  

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.

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.  

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!  

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.

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?