Advocate Psychology for Special Needs Parents

 I have been a special needs parent for 17 years now. My "kid" is an now an adult. I've debated about continuing with posting and decided that I will, but veer more to the parental side. I want to respect my guy's privacy, but there are so many new parents starting this hell of a ride, as well as those looking at that post 18 years old transition we are currently navingating. I still have thoughts, things to say, and info to share.

Allons-y! But first, some humour. 

Here is my approach to IEP meeting prep and crafting email messages, requests, and responses (after the initial emotional outburst). Each day, every day. Sometimes continuously, from the time I wake up until the time I fall asleep where I am sitting.

With thanks to all the brilliant folks at Pixar.

Advocacy Tools When Behaviors and IEPs Go Awry

 I came across a Disability Rights California post in my social media feed that I wish I'd had several years back. It talks about steps to take and offers tools to use if there are Behavior and Discipline problems with you child and the school. The letter format for requesting a copy of their Behavior Emergency Intervention Report and the Checklist of steps to take if you child has been suspended or restrained at school are excellent. 

When James was in 8th grade, at a new school, his IEP was not followed. He was set up to fail. For the first time ever, he was suspended. That principal did so many things that were both hurtful and illegal that the lawyer I hired, who preferred to peacefully negotiate, took umbrage. 

I can tell you that documentation, being able to create a clear (and provable) timeline of events, including letters and steps like those mentioned above, were vital to us getting our position heard and James receiving the best placement for his (current) school.

Do not be afraid to use these tools. You need them to advocate for your child or family member. You can even use the letter template to request other legal services to support your child, such as a request for outside assessment by a non-district Neuropsychologist. You can also use it as a template to ask questions or request an IEP meeting. It's also great to have just in case. Fantastic if you never need to use it, but so very, very handy if something crops (or creeps) up.

The Disability Rights California has a well-organized online center of information related to Special Education, as well as Resources and Programs for those with disabilities and those who advocate for them. 

#WorldAutismAwarenessDay

It's World Autism Awareness Day, and Autism Awareness Month

Love this guy so much. Learned so much.

The United Nations is holding an Inclusive Quality Education for All Virtual Event: Friday, 8 April 2022, 10:00 - 11:15 a.m. EST.

This is incredibly important for our kids and future. Please see the link below.

While inclusion is not the answer for everyone, the world needs an introduction into the lives of a segment of the population that continues to grow. Understanding and reaching out makes for a better future together - socially, spiritually, independently, and financially.

Link to register - open to all: Inclusive Quality Education for All Virtual Event on 8 April

When Time Is An Illusion

 "After Work", Doubly So

It's 7:00 PM. A full day of school for James, work for me. Then we had a home ABA session for 3 hours (yay!). After this I scarfed down dinner and hopped on to Zoom. I cannot diss Zoom. It's changed the game for me. I can now attend meetings I had to miss before (no time to drive or respite for James), doctor appointments (for my family, without using all my hard-earned PTO - recently, I can start scheduling care for ME), Tonight it's a presentation on IEPs. 

That's right. The lady with 14 years of IEP experience is watching an online presentation on the thing that is the partial cause of silvering tresses and sleepless nights. Because, hey - it's not like I was able to do this before. Who knows? I could learn something.

We are 15 minutes in and already bad flashbacks to 3 years ago But hey, then I feel better that my responses were warranted and that, eventually, James' legal right to access services were upheld. 

This is a very good program. There are parents and professionals online from all over the Bay Area and as far away as Fresno! I am so glad these are happening - I wish I had been able to attend a session like this when I was just starting out (although several teachers and administrators were very helpful).

Big shout out to the language - from the alphabet soup of acronyms to understanding nuances between "appropriate" and "best".  Great job discussing functional needs and related services. "Least restrictive environment" - always a goodie. Transitional IEPs - just when you think you've got it, a twist. 

And I did learn new things - ESY (extended school year) is any time outside of regular, scheduled school hours (in other words, it's not just summer school/session - it can cover weekends, breaks, or after school, if the district has resources for that). And schools have 10 days to come up with a response to continue services within 10 days of an emergency condition (of which we've had several over the past few years).

If you want more information, I highly recommend contacting the agencies who coordinated and put on this event:         

         

It's close to 8:30 and is my day over? Not really. I am James' caregiver, and he is testing the doors when he should be doing his bedtime routine. I will remain on duty until he's safely in bed. And then sleep light.

Fighting to Protect Endangered IDEA

What Is IDEA?

From Wikipedia: "The Individuals with Disabilities Education Act (IDEA) is a four-part (A-D) piece of American legislation that ensures students with a disability are provided with Free Appropriate Public Education (FAPE) that is tailored to their individual needs. IDEA was previously known as the Education for All Handicapped Children Act (EHA) from 1975 to 1990. In 1990, the United States Congress reauthorized EHA and changed the title to IDEA (Public Law No. 94-142). Overall, the goal of IDEA is to provide children with disabilities the same opportunity for education as those students who do not have a disability."

What's Happening with IDEA?

The promised 40% funding from Congress has not delivered, and decreases as levels stay stagnant (or are cut) and the need for services covered under IDEA skyrocket in public schools. I have seen the struggle to retain and train qualified educators and paraeducators in our local public school districts. It's become harder after fire destroyed a significant chunk of housing and increased cost of living in our area.

Our current head of education, Betsy DeVos, has been consistently trying to weaken or defund IDEA ever since she took office. Not only is she grossly unqualified to make decisions about education due to a lack of experience with the public, schools, and education, she doesn't care about the kids in public schools - especially the costly ones with special needs. She pushes charter schools, which may sound like a good idea at first but upon closer inspection basically shifts any responsibility for enforcement of IDEA off the shoulders of the federal government and leaves you at the mercy of people trying to make money off education. It's sneaky, and a huge leap backwards, widening the cracks our kids fall into between supports and services into something more like the Grand Canyon.

What can I do?

Contact your representatives in Congress and urge them to fund and protect IDEA. Show you understand it and that you consider it's enactment important for you and your community.

In March 2018 a Bill was introduced to increase funding and support for IDEA, S.2542 IDEA Full Funding Law. It has been referred to the Committee on Health, Education, Labor, and Pensions (that's Betsy DeVos, incase you were wondering). In March 2019 an amendment bill to the IDEA Act introduced, S. 866 IDEA Full Funding Act. Write and urge your representatives to support these bills.

Not sure who is your Congressional rep? Here's a website to locate your congressional representatives.

Why is IDEA Important?

• Programs that benefit all students are likely to be cut.  Each year that Congress fails to meet its 40% promise, districts are forced to pay a higher proportion of the special education cost. Schools and districts have been facing budget cuts for years and there is a scarcity of resources in many of our nation’s schools.  As a result, districts are forced to make hard decisions about which programs to fund. Schools and districts are sometimes forced to divert funds from programs that serve all students (including students with disabilities) into IDEA. This should not be a choice schools and districts are forced to make.
   
• It becomes harder to recruit and retain qualified teachers.  Over time, as districts are forced to put more funds into IDEA, they are unable to use those funds to increase teacher salary, decrease class size, or update classroom resources. The continual funding crisis makes it hard for schools to invest in the types of activities that will bring in and retain the best teachers.
    
• Our schools cannot thrive until students with disabilities succeed.  It has long been proven that including students with disabilities in our general education classrooms benefits all students — those with and without disabilities. When schools focus on the success of students with disabilities, the school as a whole thrives. Until they have the resources they need from the federal government to fully fund IDEA, schools will continue to struggle to provide the comprehensive and high-quality services that students with disabilities deserve.

(from National Center for Learning Disabilities)

Call to Advocacy

Today in Sacramento a rally will be held at the Capitol for the purpose of highlighting the need for continued support of the Lanternman Act and a call to action for State Legislators to sign a letter that request $290 M to keep supports and services in place.

I know why this is important, because James and I have benefitted from services that came out of this law. For those of you who are wondering why this Act needs support, here is a good site: The Lanternman Coalition.

If you've ever wondered what you could do to help James or I, or someone like us, or if you just love to engage in political/social activism, I invite you to send a message to your CA State Legislators ASAP to show at the rally and sign a letter to fund services under this important law. The rally is this morning, 4/3 from 10 until around Noon.

I know time is short - so here are some links to make it easy:

• Find your Legislator
• Tweet you Legislator - this website has everything ready to go for you: Social Media Toolkit
• email your Legislator - my message is below.

Dear Assemblyman ___________:  I am writing you today to ask you to attend today's Keep the Promise rally at the Capitol to support the Lanternman Act. As a single parent of a child with developmental disabilities I appreciate how crucial it is to have access to services supported by this law. I am asking that you sign the letter sponsored by Assemblymembers Chris Holden and Jim Frazier, along with Senator Stern, to increase funding by $209 million to help retain workers who provide crucial services for thousands of families such as ours, and keep the organizations that provide these services open.

I have personally experienced the loss of several great people who could no longer afford to work at low wages for such services as respite care, behaviorists, classroom aides, and teachers. Living in a fire devastated area that is experiencing soaring housing costs puts hardship on us all. Having your support of the Lanterman Act is very important to us all who live here and will continue to be strong support for so many of us who live in not only Santa Rosa but Sonoma County.

If you would like to know more about why I ask for your support of the Lanternman Act, I invite you to contact me.

Yours Sincerely,

For more about what the Lanternman Act means to people and the community, the video below is great!

Thank you!

Out Like a Lion

This month started off just trying to push through until Spring Break. Then there was Spring Break! Then we got sick ...

Now in the last days of March, we have started ABA intake and at the most recent Triennial IEP meeting (which has been ongoing since September) I signed a release form for the school district to discuss placement outside of the public school district. Both of these developments make me want to roar - because it has taken a lot of work to make them happen.

ABA can help get James support to learn self care, from brushing his teeth to taking baths on his own initiative. It can include social events and opportunities. It means James and I get a break from each other. It means James gets help learning life skills to become independent.

Better placement for school goes a long way to my peace of mind for James' future, after disappointments and broken promises over the past 2 years.

Yes, I want to roar. Finally, help for James! Who is grrrrreat!

More Of This

I wish this could be shared with special needs parents who need support and encouragement, and at staff trainings for all schools, preschool through high school.

My takeaways yesterday from the emergency IEP yesterday:

• The importance of parents of autistic kids having confidence, overall, with their relationship with their little ones, their kids, their teens. 
• It is amazing to me (again) how many trained professionals (their terms, I am not randomly labelling them) know so much less than I do about working with special needs kids, and mine in particular. This is not a put-down. It's a call for collaboration.
• The impact and results from people coming together to talk and listen to each other to solve a situation that is not working for both groups can be extremely profound.
• That parents being advocates sometimes needs to include being the one who teaches others and keeps the focus of a support group on track.
• NEVER underestimate the importance of telling others who your child is, especially if, like James, they lack the communication skills to do so.  

We had one of the best meetings so far with this district. I could feel the change taking place in the energy in the room. I felt it most acutely after telling the group this:

James is, basically, a happy guy. He's funny and smart. He wants others to be happy. He wants to be like his peers and he will reflect what is modeled before him. He cannot communicate verbally all the things going on inside his head or his emotions. This is a large part of why he exhibits behaviours.

I felt listened to. It was energizing. I hope that my listening to their struggles and attempts to support or give advice for them were helpful too. In the end, our reason for being in that room was for James, as it should be, and I think that's going to be the start of a change for the better.

Advocate Stratego

My email resulted in a call this afternoon. The school to home communication is messed up. James is back to having an aide that does not know how to deal with him. There may be another aid in a couple of weeks.

When did the parent become the quarterback, calling the plays that need to go through at school?

Then two more calls in response to different email. The ABA services provider got more frustrated than me, trying to set up 3 more intake session before we could even think of matching my son to an actual person. They are based an hour away from us and returned the referral. They did try, but on a bad day, one of us would have had to travel 45 miles in a trip that can take up to 2 hours one way.

Back to square one, where we were in October. We may get to start up again in a month.

To paraphrase this excellent article "Why is every step a fight?"

Autism Speaks March, 2011

A Year of Process and Outrage

It's almost the end of another year. What a tough one it's been, especially for James. How the system is failing him. Failing us. Namely, the school districts and the government that is supposed to fund and provide guidance to said school districts.

The upshot is that it has been a year of James being without a steady, structured educational environment. It's showing. It's come at a horrible time of a flood of hormones, added height, and explosive frustration.

In short: two Sonoma County school districts, our State and Federal governments failed us at a crucial time and they pretty much bank on parents like myself being too tired, broke, or ignorant to do much about that.

Here's where being outraged pairs well with stubborness and endurance. I am currently engaged in several Processes, some of which include legal, to fight for my son to be educated and supported per his legal rights. To give him tools so later in life he can be as independent and self-supporting as possible.

I call them Processes for the good of my soul. It's long-termed and I know he won't get his full legal entitlements while the federal Secretary of Education removes guidance and legal protections for other-abled students, our state government continues a pattern of funding cuts for public schools and special education, districts side with unions over student needs, and schools actively work to keep special needs parents in the dark about what is actually happening at school.

My mother taught for 30 years. She worked for and received a Masters in Special Education while my brother and I were in high school. I have helped teachers in private and public schools since I was in the 5th grade. I have seen a lot of school from both sides and understand how games must be played to do the best one can in a system. I understand schools are being asked to do too much with too few resources and training. I understand it is hard to work with kids in general, our kids in particular, and sometimes parents most of all. I do get infuriated when I want to pitch in and help but get treated like the enemy. And lied to. And meanwhile, my guy gets put in a corner and short-changed. Over and over. So yes, outrage.

Our public schools systems are not perfect. They never will be. That doesn't mean we get to shrug our shoulders and let it go. Throwing money at schools is not a solution (although it can help). It doesn't mean that yelling or pointing fingers will do much. I think our best bet is to keep trying to hold schools and government agencies accountable, and try our best to partner with them for our kids in this Process.

Temple Grandin

Autism in the Family is an incredibly apt title of the conference I'll be attending today.

Temple Grandin is the headliner. Her mother will be there too, and I am intensely interested in hearing what she has to say, as autism is indeed in my family, which has disintegrated, despite best efforts to prevent its happening.

A few thoughts about Temple Grandin:

• I first heard about her from my son's helpful and informative pre-school teacher.
• I have long wanted to see her in person and hear her speak live. Being able to do so today is an incredible moment for me.
• If you don't know her, this is a great place to start: Temple Grandin Trailer
• I wonder what she considers talking points for autism for parents and educators.

After so many years in isolation, I am looking forward to being in a room of other people who get it, and have lived their experiences with autism and "Different, Not Less".

Tackle It Tuesday: Alongside, Awareness, Action

I read this interesting article in a feed from MyAutismTeam.com and it brought up an good topic. The article is titled "What Typically Developing Children Learn Alongside Their Differently Abled Peers" and reminds us that programs like full-inclusion in classrooms and elsewhere in society can result in more typically abled people learning from those with special needs.

To me, this can bring anything from awareness to a desire to become more involved and help others. Also importantly, it begins a change in perception for next generations to be more open to the idea that there is more than one way or pace to live a life. And yes, I've seen it around me. My family's become more aware of what it means to be autistic. People in our community see James on a regular basis and start to see past the stims to his personality. Two of our respite care givers have learned more about special needs and run with it, helping James practice his letter writing, reading, and math.

At the CATS Party; he won a tool set!

There are ordinary people whose lives were touched by special needs and turned what they learned into programs to help others. Lorna Catford's daughter was born with many special needs. What she learned by trusting her observations turned into parental advocacy and a wonderful institution called the CATS (Collaborative Autism training & Support) Program. This program not only helps and support families of kids on the autism spectrum, it also helps train students to work with our kids and prepare them for a variety of new opportunities related to special needs. We've participated in this program 3 times; the support, information, and warmth it provides is truly a gift.

George Lawson saw a baseball program for special needs kids and was so inspired by what he saw that he started a program of his own here in Sonoma County, the Wonder League of Healdsburg. We appreciate it, because I don't know that James would enjoy that Challenger games as much as the Wonder League, let alone a regular Little League team. This will be our 3rd year of hitting baseballs, practicing our throwing, and running bases. James' big sister is an enthusiastic participant. Our guy adores his baseball shirt and cap. George told me of one game where a wheelchair-bound player was celebrating a solid base hit with a thumbs-up, and our son ran to him and gave him a high five. That's a greatest game moment right there.

Just this year we changed class rooms for James. He went from one where he was included, yet not connected to one that had students who swooped him up in class activities and saw him as part of their whole the first week he was there. As a parent, the feedback I got went from "problems and issues" to "doing good and these things need work." Might sound slight, but it's a huge change for the better in our lives.  To me, it's the best about the possibilities of full inclusion in a class that's a mutual good fit.

 So how will our world change, with children being exposed to differently abled peers, and learning alongside us about autism? I hope it's for the better, with less us/them attitudes and more of a we concept. I hope it results in more open minds, sparks of curiosity, and ability to work, live, and love together.

 

I know this is a rather abstract Tackle project, but I'm driven to advocate for acceptance and programs that will help my guy every day. Especially when I see his beautiful happy smile, and feel his joy at being in the world.

World Autism Awareness Day ... Because We Already Know

Today is April 2, World Autism Awareness Day. If you are here to find out more about Autism and/or our journey, this post is for you.

Be aware. Be very aware. You are your child's best advocate.

It's been over 6 years since I felt in my bones that something was off about our beautiful boy. At 18 months, he didn't exhibit the same burst of development that his sister did.

He was happy and smiled, but did not "talk much." He rolled over a bit late; tried standing much later than his sister's 11 months. Once he started standing, the speech babble went away. His communication resembled a parrot's squawking.

His pediatrician told me I was being a worry mom; that I should not compare him to his precocious, older sibling.  Boys can often develop a little late, especially if they have a talkative big sister, he explained. Besides, he assured me, "he can't be autistic, because he looks you in the eye."
  

Do not be afraid to insist on assessments. Don't let fear of a diagnosis or well-meaning reassurances of family and friends put you off getting your child assessed.

By age 2 James started to scream and bite with frustration. He started zoning out on us, looking dreamily off into the distance and not responding to his name or attention-getting noises right next to him (yet he could hear a pencil drop on the other side of the house).

I came back to that pediatrician, who wanted to "give him 6 more months," and told him that what I needed was for him to call in a referral to have my son assessed for autism/developmental issues. I needed to know, I said -- if only if to be told to stop worrying. I needed that call NOW. He did call, but afterward was never comfortable in discussing my son's developmental issues.

There is help out there, and services are available that can help your child. The sooner you start, the better the response and results.

Within a month, a caseworker from the North Bay Regional Center came out and started giving me questionnaires to fill out. She chatted comfortably with me as we exchanged information, focusing attention on James as she tried to engage him with simple activities. After about half an hour, she started writing. When I asked what she was doing, she explained she was writing up purchase orders. What a lot there were: speech twice weekly, in-home and group developmental play therapies (each weekly), and weekly occupational therapy. Our lives changed with this visit, before we realized what was going on.

1 in every 50 boys. It can happen to your family. The numbers, when we started this journey, were 1 in 120 children. Every year there's been a scary march closer to 1 on 1 odds of a child being born with autism. Every year thousands more are diagnosed with spectrum disorders.

It took 5 months on a wait list to get James into the CAD clinic, where he was examined by a panel of medical, behaviourist, and developmental specialists.  The thought, going into the assessment, was that James would be found to be PDD-NOS. He actually scored a solid Autism Spectrum Disorder, which is technically more severe. Since then, we have become very aware. AndI have found the importance of building relationships with schools, doctors, and more people than I ever thought possible.

Communities and relationships are vital to stay afloat in a life or family that has been swamped with Autism or special needs.

The impact of James' diagnosis and special needs constantly strains at our family. We love him dearly and would not change him. We think his autism is part of who he is. We don't think it's caused by food allergies or vaccinations. I know that every child on the spectrum is unique, and presents as individually as "normal" kids do. I have learned the power of asking for help, felt acute relief and thankfulness for the kindness of someone who reached out to do something nice for me or mine "just because." Being with others who "get" what I am going through and don't attempt to brush off my worries, accepting it is what it is ... has never been more welcome.

Follow Up: Support ... I Think

Catching up a bit here from a big shakeup or three in our family cosmos. Received this letter in the mail and wanted to share:

My first response was elation and a small frisson of delight. My first letter from Congress regarding an issue I'd detailed in an email to my representative! I know it's a form letter, but still.

Recently, I was able to read through it with greater concentration, and my reaction became a bit more ... layered. First, the second paragraph provoked an ironic smile. Yes, please tell me more about what autism is. Okay, no don't. I live with it and I believe that you, or at least your staff, has done its homework (at least until the fourth paragraph).

I had trouble understanding the next paragraph. I may have gotten a high grade in Civics and History back in, um, the 80s, but that doesn't mean that today I understand our legislative process (shame). Hello, Google -- let's take a few random legislative tours.

In particular, I was struck by the lack of detail in that third paragraph's last sentence (especially after the pithy summaries above) -- what does it really mean, when a Representative "supports" a bill? So I Googled H.R. 2005, and how Mike Thompson voted on this bill. Top results for me involved co-sponsoring of this bill. I learned one thing: Mike Thompson was not a co-sponsor. Query, what is a co-sponsor? Answer: link.

Okay, so a not being a co-sponsor does not equal non-support. Again, what did Rep. Thompson do to  "support" this bill?

I searched for his vote and found nothing. Curious. So I researched the approval process for this bill, and refreshed my memory on the journey of a bill. Thanks, Project Vote Smart! I verified that, per Rep. Thompson's letter, the bill passed in the House on September 20, 2011. A little more digging found that the reason I could not find a voting record is because the bill passed in the House by a voice vote.

Was Rep. Thompson one of those voices? I sure hope so, but he didn't specify that.

For the curious, here's an interesting look at how the bill was distributed to the House that September 20th (link to PDF file; bottom of page 10, you're welcome). And it you want to see the official Law (unsigned, but veritas in PDF format)? Here ya go!

I was not happy to see see autism lumped into "debilitating conditions and diseases" in paragraph four. While some sensitivity and physical issues related to autism may be debilitating, autism is definitely NOT a disease. You can't catch it from someone else. Bad form letter; no biscuit.

Last year I advocated that sb 946 be renewed to keep funding in place at our state's level for autism research and services. I sincerely appreciate Rep. Thompson's follow-through to report that H.R. 2005 was signed into law by President Obama (yay!) and the exact date of the signing. In an election year, it's important to remind constituents of how their interests have been represented.

A little more clarity on the "support" given to H.R. 2005 would have been excellent and I sincerely hope Rep. Thompson and his staff are aware that autism is not a disease. I am glad to see that one of my Congressional Representatives is aware that autism is a big issue to lots of families, and he's willing to go on record as a supporter of research and services to help those affected with autism.

Layers, I tell you -- but with a hopeful feeling, overall.

Listening Goes Both Ways

We've already heard a lot of name calling in the months leading to the upcoming elections.

Our governor has told us that to help balance the budget, we as middle class citizens will need to pay more in taxes.

The past two governors talked about having to cut costs by increasing our hardships --  many of us pay for our childrens' supplement for services on a reduced family budget, because funding has been slashed for the Regional Centers. Our schools are reeling from recent budget cuts and broken promises to replace monies already robbed from their budgets.

Our Congress seems more intent on religious and political vendettas rather than listening to their constituents, building consensus with We the People, and taking steps to preserve our quality of life now and in the future.

The presidential candidates don't seem to have those on the spectrum on their radar. This is not good, because in 10 years, the first waves of 1 in 88 children diagnosed on the spectrum will be adults. What will their lives be like? Where will they live? What jobs can they hold? What is our national plan to integrate them in society?

It's not Chick-A-Fil; it's about children.
Our children. Our future.
In a decade, 1 in 88 adults will be on the Autism Spectrum; will we be ready?

It's time for our politicians to listen to us, and those on the spectrum.

Please register to see how you can get involved and make your voice heard.

My confirmation of registry email.

This is how we start.

Where Is the Evidence for Autism Patient Care?

Paul Corby

I have been seeing posts around the blogosphere recently about Paul Corby, a young man with a congenital and deadly heart defect, who has been denied a heart transplant. There is a short list of reasons for denial, and number 2 on the list is ... Autism (link to story).

Quite frankly, I don't understand this. Why would Autism be considered a medical reason to deny a life-saving procedure? The rejection letter (that has been posted) provides absolutely no details or references scientific evidence why Autism is a contraindication for a major organ transplant.

A contraindication, by the way, is a condition or factor that may increase the risks of a medical procedure. Contraindications are absolute (as with proven dangerous results) or relative (where the results of the procedure are usually too complicated by said condition to be truly effective). I can't find a definition of all this quickly, by the way, I had too look through dictionary websites and a quick Google search with "Autism as a Contraindication" filter.

The closest thing I could find in my quickie online search was that some medicines used to treat anxiety and aggression are contraindicated in Autism patients with heart conditions (link to source).

So, without knowing all the facts, and being Jane Public (mom of a child on the spectrum), I am left with the impression that the doctors really don't know how Mr. Corby's Autism would impact the effectiveness of a heart transplant. They list instead complications of the complex procedures (which, I am pretty certain all heart transplant patients face) and "unknown and unpredicatable effects" of steroids on Mr. Corby.  Well, not being able to pump 80% of your heat's blood back out into your body is kind of a huge complication already and it predictably leads to reduced quality of life and a very short life span.

It sounds to me as though they'd rather not deal with all those unknown issues and complications.

It reminds me of hearing about how doctors initially recommended hospice instead of surgery for my grandmother, who at age 80, had a pretty advanced case of colon cancer. Part of their recommendation was tied to her age, and their experience that older patients in her stage either did not survive the operation or did not live long after.  They did, however, listen to her family and agree to try the surgery. Well, by day 2, that lady was walking the floor with her IV pole, doing laps. She had contests with her adult grandchildren to see who could blow her balls higher in her Mediciser and joking with the nurses. The surgeons later told the family she changed their perception of elder care and surgery recommendations.

It reminds me of how I've had to advocate for my son several times in a medical environment - precisely because (1) there is so little evidence out there on how to diagnose and treat patient on the Autism Spectrum and (2) Autism presents so uniquely.

We don't know much about Autism -- it's causes and effects on our lives. Many of us have had incomplete or incorrect medical recommendations for ourselves or loved ones. The only way to prepare our medical communities for the coming wave of diagnosed adults on the Autism spectrum is to start creating Evidence-Based Medical Practices and Guidelines for Autism patients NOW.

If you want to do more, there is an online petition being circulated online to Penn Cardiac Care at Radnor to put Mr. Corby on their transplant list -- please review and sign if you support this cause.

If you are an Autism parent -- keep advocating! Get second opinions. Support each other and help our communities to, in turn, support our kids on the spectrum. My thoughts and prayers are with Paul Corby and his family. I can only imagine the frustration and stress they must be going through. It is my hope that he and his family receive the services needed at either the Mayo Clinic, where they are seeking a second opinion, or Penn Cardiac Care.

(Thanks to Shelley at unlocking doors for her informative post on this.)

SpEd Special Agent - Wanted

So Comic-Con is wrapping up this weekend in San Diego. Being the big sci-fi geek that I am, I am enjoying what tidbits of news and photos I can score online.

It did get me thinking -- I'd love my very own Sci-Fi Hero to help me on my daily quests for truthful information about autism, social integration, and help in getting services for our son from our health care company.

You know who I came up with?

That's right, Cobra Bubbles.

Who would not want this upright, dapper, bad-ass agent on their side, during and IEP stalemate or dealing with a corporate double-speak runaround in an insurance enviromnent, saying:

"Let me illuminate to you the precarious situation in which you have found yourself. I am the one they call when things go wrong; and things have indeed Gone Wrong."

 And bring it home with a winning note of:

"IEP compliance. Include ABA Therapies. Good Day."

I get a big grin every time I think of it.

So who would you want for your SpEd Special Agent?

Powerful Reasons for Raising Awareness

Several events have hammered home for me the need to raise awareness regarding Autism and special needs of our kids might have.

Booth from 2011 Walk now for Autism Speaks

• I have had staff of two different schools approach me and ask about resources for autism screening and resources. There seems to be a definite need for educators to recognize signs of Autism and resources to both offer referrals, as well as additional training for staff.
    
• When a big Autism story hits the news, family and friends look to me and ask if I've heard the latest. They want to know what I think, which is a great opportunity to discuss and raise awareness. Would be so much better if I knew more and therefor had better information to share.
     
• At least two of my child's pediatricians have questioned that he has Autism. This is in a big HMO. One of these pediatricians actually challenged his diagnosis from the CAD Clinic. A third pediatrician went to bat for us, requesting additional services to help our son. Most of these requests were denied - especially in the ABA area.
     
  
• I was asked to give a talk last year on Autism to a local volunteer organization and many of them had no idea of the impact it was already having on our community. They wanted to learn more and how they could help.
     
• There have been several heatbreaking news stories about families dealing with in despair who decided the best solution they had was to end their lives. The constant wear to one's energy, financial burdens, lack of resources, and social isolation can be deadly.
     
• People are starting to find their own answers that can both help mainstream individuals on the spectrum and provide them a way to live independent lives. Examples: The CATS Program, MyAutismTeam.com, Specialisterne, and programs like the Wonder League. This is the tip of the iceberg, my friends. We need more thinking  with this in mind; there can be success stories!
     
• Budgets again are being slashed for the front-line providers: Regional Centers and the public schools. This is bad in so many ways, I could make a short story out of the reasons why I know this is both short-sighted, false prioritizing, and wrong. The biggest reason being ...
     
• The numbers of our children being diagnosed with Autism keeps rising, with no end in sight. How can we halt or treat something we don't fully understand? The official CDC numbers are now 1: 88 children on the spectrum; 1: 54 for boys. In Utah, the numbers show 1: 47 children and 1: 33 for boys. Experts believe that the true numbers are closer to 1: 33 than 1:88. These children will be adults in about a decade. More generations of Autistic children will follow.
     
• Too many children are being diagnosed past the ideal diagnostic age of 18 months. If a child can be diagnosed and receiving services before age 3, their brains have a much better chance to develop and allow better communication and development overall. More parents need early detection information so they can act earlier.
    
• The problems of dealing with children on the Autism spectrum, integrating them into society, and helping them grow into independent, well-adjusted adults cannot be ignored. Knowledge is power and we as a community need more of it to get more information about Autism, and use it to help our children, the people who work with them, and help avoid Autism in future generations.

I love James for who he is. I accept that Autism is part of him. I do not love what Autism is putting us all through.

So yes, we will be walking on April 14th. And talking. And sharing. And hoping.

 Thank you to those who have helped us so far. It really means a lot to us!

MyAutismTeam.com - I Wish I'd Known ...

"I wish I'd known ...." is a common lament from those with hindsight and experience ... that comes after the fact. With parents of children on the spectrum, it's a constant. We're all searching for more information, better understanding of our child, and answers that will help us.

It's not just for a diagnosis, root cause of our child's autism, and what to do/not do for our children, it's also where to take them for dental checkups, summer activities, and ideas for how to fill the deadly (for us) Unstructured Time.

After four years of coming to grips with our son's autism, I began emerging from a fog to realize several things that had crept up on me ... including that I was isolated and feeling a keen desire to connect with others. To share what works/does not work.

From my association with the CATS Program, I first heard about My Autism Team this past winter. They are committed group with experience in online communities and referrals that wanted to build an online community of parents of children on the Autism spectrum, so that they could share resources and rate programs and services for their families, in hopes that their hard-earned knowledge could benefit others, and vice-versa.

Login screen for MyAutismTeam.com

When their beta site launched, I plunged in and began building a profile, adding team members for all that had been helpful with a son who was largely non-verbal, developmentally delayed, social, and sensitive with certain noises. People who dealt well with yelling and crying during an office visit and who were willing to act as socializers for an atypical child. I've been reading others' profiles, searching to see if any providers will work for us.

Then there are the posts from other parents. Ones that make me smile, cry, and hurt my heart (both good and bad). The messages from other parents across the U.S., encouraging one another to hang in there, that we are not alone in our despair, frustration, and determination to help our kids and savour the good in life.

Questions, encouragements, advice. It's all there.

There is room for so much more and so many more families.

If you haven't visited already, please check out MyAutismTeam.com, or send an email to a parent you know who might be able to use it. They are also on FaceBook.

If you live in the SF Bay Area, MyAutismTeam.com is looking for parents to come to their office and give feedback on their site.

In Which I email the Guv

Dear Governor Brown: As a parent of a child diagnosed with Autistic Spectrum Disorder I am asking for your help in signing sb 946 into law.

I am letting you know that our family has lost half its income, as I had to leave my job to help cope with the therapies, meetings, research, and paperwork involved with getting our son the help he needed. We are feeling the crushing financial stress of managing more needs on less money, with less services available to us because schools and regional centers are also trying to operate on severely reduced incomes that keep losing ground even as the needs of the families rise. All this in the midst of a recession and rising prices. We need help financially and hope that this bill can be the start of better partnerships with insurers and the government so that families do not have to bear the brunt of the costs in dealing with a rising national epidemic and shrinking income.

Additionally, I have sought help from our HMO, and tried working with them to see if they could help supplement some of the services needed by our son, with discouragingly little success. The main reason I find for this is not the front liner providers. Indeed, they have tried very hard to help us. Their hands are tied by the industry. I am hoping very much that the passage of this bill can begin to reform this trend.

Finally, I hope you pass sb 946 by the October 9th deadline, because we are all facing physiological deadlines with our children that we cannot change -- namely the fact that a human brain is much more adaptable up to age 3, and thereafter begins to drop off in its pliability. The  earlier interventions start with a child on the autism spectrum, the better the treatments work. They also do not have to be continued for as long, because the adaptation is easier to facilitate the younger the child.

I know our state is in a huge financial mess. I ask that you not sacrifice the health of the next few generations to effect a quick fix. I ask that you consider that, while there may be some increased costs up front, the savings against having to provide future, costlier, and more pervasive services to a fast-growing segment of the population are overwhelming, and the well-being of our society so much the better.

What I and other families are asking for is help, so that we can make better partnerships NOW so our children can live lives that are more independent and self-sufficient.

Yours most sincerely, James' Mom

(okay, I used my real name, but that's how I felt)

Send your message to the governor, California! And if you're wondering why I emailed him, it's because I care.