The Number One Thing Every Special Needs Parent Must Do

Take Care of Yourself! 

I’ve been spending a lot of time in contact with moms and grandmas of special needs kids lately. 

My heart goes out to them because they are so tired. . . .and exhausted. . . .and worn out . . . .and overwhelmed and fearful or frustrated.  Who wouldn’t be?  I mean between dealing with appointments and insurance and doctors and complicated service systems and and lack of family support and child who needs a lot of help–there’s enough to inundate anyone.

And they are a lot like I was.  I know that overwhelm because I lived it for a long time.

That overwhelm creates stress.  A lot of stress.

And unfortunately this stress shows up in a lot of different forms–none of them helpful.  Moms start feeling paralyzed. .  .or confused . . . .or stuck . . . .or worse.

Or depression or anxiety can take hold. . . .weighing them down.  Just going through each day can feel like walking in quicksand wearing army boots.

This is why SELF CARE is vital to parents of kids with special needs. 

Self care is self preservation.  When you’re constantly giving, and pouring yourself and your efforts ceaselessly into the overwhelming needs of day to day life without taking a moment to refresh, disaster will eventually follow.

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Diverting the DeVos Disaster

The shock waves following Senate confirmation hearing yesterday (Jan 17) of Betsy DeVos for Secretary of Education have been reverberating all day, prompting many concerned parents and educators to flood senator’s comment line voice mail line with calls to oppose her confirmation.

Why?  What could possibly be so bad? Turns out, just about everything.

She was consistently evasive to direct questions from pretty much all the Republicans.   She hadn’t turned in her required financial paperwork.  She claimed that IRS forms listing her as the Vice President on her mother’s foundation were a “clerical error.”  And the list just goes on. . . .

Here are a few highlights. . . .

Guns In School

Senator Christ Murphy tried to pin her down about accountability, but the bombshell answer came when Mrs. DeVos was asked about guns in schools.

Murphy:  One final question:  do you think that guns have any place in our schools.

DeVos:  I think that’s best left to states and locals to decide.

Murphy:  You can’t say definitively today that guns shouldn’t be in schools?

DeVos:  Well I refer back to Senator Enzie and the school he was talking about in Wapiti, Wyoming.  I think probably there. . .I would imagine that they need a gun to protect against potential grizzlies.

My 15 year old just wandered in and commented:  WTF?  How many states in the US have grizzlies??  And I think she expresses the sentiment that most people felt when hearing that comment.

Making Childcare Affordable. . . .or not

Senator Bernie Sanders asked her point blank about her views on making childcare affordable, and she could only respond with ambiguous bureaucratic double talk:

Sanders:  How do we help those moms who make $8 or $9 an hour being able to afford quality child care?

DeVos:  I look forward to helping that mom get a quality education for their child or children so that they could look forward to a bright and hopeful future.

What????  So no childcare?  And where is the mom going to get a quality education?  Wow.  She is impressive at not giving a straight answer.  I wonder if she was a used car salesperson ever.

On the importance of Growth v Proficiency

Senator Al Franken was astonished to find out that Mrs. DeVos had no knowledge of the long standing debate on testing for growth versus proficiency in education.

Franken:  I would like your views on the relative advantage of doing assessments and doing them to measure proficiency or to measure growth.

DeVos:  Thank you senator for that question.  I think if I’m understanding the question correctly around proficiency, I would correlate it to competency and mastery so that you if they’ve reached say a third grade reading level. . .

Franken:  Nah, I’m talking about the debate between proficiency and growth.  And what your thoughts are on that.

DeVos:  I’m just trying to clarify. . .

Franken:  Well this is a subject that has been debated in the education community for years.  I’ve been an advocate of growth.  But it surprises me that you don’t know this issue.

Yes, Senator Franken.  All of us are surprised.

On Accountability and IDEA

Senator Tim Kain did the best job of squeezing a simple yes or no answer out of the evasive Mrs. DeVos.

Kain:  I think all schools that receive federal funding should be equally accountable.  Do you agree with me or not?

DeVos:  Well, they don’t.  They’re not.

Kain:  But I think they should.  Do you agree with me or not?

DeVos:  Well no, because

Kain:  You don’t agree with me.  Let me move on to my next question.  Should all K-12 schools receiving governmental funding be required to meet the requirements of the Individuals with Disability Education Act?

DeVos:  I think they already are.

Kain:  But I’m asking you a should question.  Whether they are or not, we’ll get into that later.  Should all schools receiving tax payer funding be required to meet the requirements of the Individuals with Disabilities and Education Act?

DeVos:  I think that’s a matter best left to the states.

Me:  WHAT?????????  Let the states decide whether they want to meet the requirements of a federal law?  Wow!  That would be terrible for Texans, where an 8.5% cap was placed on the number of students who could be served by school districts!

Kain:  So some states might be good to kids with disabilities and other states might not be so good.  And then what.?  People could just move around the country if they don’t like how their kids are being treated?

DeVos:  I think that’s an issue that’s best left to the states.

Kain:  What about the federal requirement.  It’s a federal law.  Let’s limit it to federal funding.  If schools receive federal funding, should they be required to meet the requirements of the Individuals with Disabilities and Education Act whether they’re public, public-charter or private?

De Vos:  I think that is certainly worth discussion and I would look forward to

Kain:  So you cannot yet agree with me?

He then tried to pin her down on school reporting for harassment and bullying and she evaded again.  So I’m wondering. . . . where exactly is the accountability that she claims to believe in.

On Sexual Harassment at Colleges & Universities

Senator Casey tried to pin her down to express an opinion about sexual harassment on college campuses.  At least she agreed it was a problem.  Then he got more specific:

Casey:  In 2011, guidance was issued on Title IX by the current administration.  I’d ask you if you’d uphold that 2011 Title IX guidance as it relates to sexual assault?

DeVos:  Senator I know that there’s a lot of conflicting ideas and opinions around that guidance.  And if confirmed, I would look forward to working with you and your colleagues and understand the range of opinions and understand the ideas from the higher ed institutions that are charged with resolving and addressing these issues.  I would look forward to working together to find some resolution.

Casey:  I agree with the guidance.  I’m just asking for a yes or no answer.  I guess you’re not going to give me a yes or no answer to committing to upholding that guidance.

DeVos:  It would be premature to do that today.

What????????  So is she saying that it’s ok for the universities and colleges to continue ignoring the 25% sexual assault rate on campuses even though she thinks sexual assault is a real problem?  WHAT???

More On IDEA & students with disabilities

Several of the Senators tried to pin Mrs. DeVos down on her views of IDEA.  Senator Maggie Hassan, because of her own son, was very persistent asking about Mrs. DeVos’ opinions about IDEA.

Hassan:  I had the opportunity to send my son to the same public school that my daughter went to because . . um.. because the law required that school to provide him with resources that were never provided before that law was passed.  Because they’re hard.  And so the question is will you enforce the law with regard to children with disabilities if a voucher program did allow them to go somewhere else and the school said, “it’s too expensive we just don’t want to do it.”

DeVos:  There are some wonderful programs for instance in Ohio. . .

Hassan:  I’m sorry to interrupt you but my time is short.  And you have not answered my question. I wish we had the opportunity for a second round.

On Higher Education, the Loan Program and Prevention Waste, Fraud and Abuse

Senator Warren did a very thorough job on establishing that Mrs. DeVos has no experience running any kind of loan program or any college financial aide program.

Warren:  Now we all know that President Trump’s experience with higher education was to create a fake university which resulted in him paying a $25 million dollar to students that he cheated.  I’m curious how the Trump administration would protect against waste, fraud, and abuse at similar for profit colleges.   How do you plan to protect tax payer dollars from waste, fraud, and abuse by colleges that take in millions of dollars in federal student aide?

DeVos:  Senator, if confirmed, I will certainly be very vigilant

Warren:  Yeah, I’m asking how.

DeVos:  The individuals with whom I work in the department will ensure that federal monies are used properly.

Warren:  So you’re going to subcontract that?

DeVos:  I will work diligently

Warren:  I just wanted to know what your ideas were on this.

DeVos:  I will work diligently with my staff to ensure that we are addressing any of those issues.

Warren:  Well let me make a suggestion.  It turns out that there are a whole group of rules for this.  So what I want to know is will you commit to enforcing these rules?

DeVos: Senator I will commit to ensuring that the universities are serving their students well.

Warren:  So you will enforce the gainful employment rule so that these career colleges are not cheating students?

DeVos:  We will certainly review that rule. .

Warren:  Just review?  You will not commit to enforcing it?

DeVos:  . . .and see that it is actually achieving what it was intended to.

Warren:  I don’t understand about reviewing it.  We talked about that in my office.  There are already rules in place to stop waste, fraud, and abuse.  I don’t understand how you cannot be sure about enforcing them.  You know, swindlers and crooks are out there doing backflips when they hear an answer like this.   If confirmed, you will be the cop on the beat.  If you can’t commit to use the tools that are already there, I don’t see how you can be the Secretary of Education.

No, Senator Warren, and neither do I.

Please call your senators right now.  If you don’t know who they are, google “who represents me in X (the name of the state).


Webinar coming on Jan 12–5 Critical Keys to Speak Up for Your Child!

2017 is starting off with a flurry of activity — and the first thing on the list is I am launching my webinar and on-line course offerings under the moniker of

Advocate Well. 

This organization is going to combine my two loves–advocacy and wellness.  Having a child with special needs can create a lot of stress for parents.  I was under so much stress 10 years ago that my teeth started to fall out.  We now know that stress is the number ONE cause of disease.  I meet so many parents who are sick.  When you don’t feel well, you can’t be present to advocate for your child.

The first FREE webinar that I’m planning for this year is
5 Critical Keys to Speak Up for Your Child.  Click on the link to register for the free webinar!

It’s not just for parents in Texas–it’s for parents and providers who support parents all over the US.  I will be teaching my simple, step by step strategies to making sure that when I take my seat at the ARD/IEP table, the other members of the team cannot just write me off as another mom.

While these strategies are simple, I have been amazed at how many people, even those who are long time advocates don’t use them.    In this course I will teach you how to:

  1. Know who to know
  2. Supercharge Your  Child’s IEPs
  3. Tap into the Network of Experts
  4. Overcome the Number One Tactic the School Uses to Deny Services
  5. Tame the Paper Dragon

So join me on Jan 12 on-line by clicking here!  Looking forward to it!

Need Help with ARD/IEP meetings?

Send me the e-booklet!

I’m excited to be sharing a e-booklet I’ve written to help parents use the power that IDEA grants them as a member of the ARD/IEP committee. 

This booklet is for you if you’ve ever been:

  • unable to get the school to send you paper or electronic copies of your child’s evaluations 72 hours BEFORE the ARD/IEP meeting so that you have enough chance to read and digest them
  • to an ARD/IEP meeting for “one little thing” that suddenly and surprising turned into a discussion you didn’t want
  • surprised to find unexpected people present you weren’t expecting
  • surprised to find people not present who you were expecting
  • unable to have the ARD/IEP committee address a concern that you’ve been bringing up

Send me the e-booklet!

OSERS is Listening–Do YOU have anything to say?

This week–Dec 12 – 16, OSERS (Office of Special Education and Rehabilitative Services) is in Texas in response to the Houston Chronicle series Denied.  This series details how TEA set a cap through the Performance Based Monitoring System on the percentage of students in Texas that school districts could serve.  If a school district provides more than 8.5% of its students with special ed services, then TEA lowers their performance level.

Listening sessions  will be held this week in only five Texas cities.  Click on the link to find out details for where and when.  People testifying will have 3 minutes to present their story.

In Houston, 100 people signed up to speak, and in Dallas 96 people signed up.  Both sessions ran over their 2 hour allotted time because parents and teachers were so passionate to share their stories about children being denied needed and federally mandated services.

Additionally, US Rep. Sheila Jackson Lee was in attendance for the entire Houston session, and she took notes on the names of specific schools where parents reported serious issues.  Rep. Jackson Lee has requested that people feel free to contact her in Washington if they have a story to share.  Also in attendance was Houston based Texas state Sen. Sylvia Garcia.

If a parent, teacher, or related service provider has more to say than can fit in three minutes, the a blog has been set up to allow stakeholders to say more.

Please share these links with all parents whose children receive special education services through either ECI or the public schools.

Please comment on the blog if you can’t be there in person.  Together we can make a difference.


Would you like to know more about how to speak up for your child?

YES!  Send me the expert tips!



Advocacy 101 for Super Busy Texans–the Basics of Speaking Up Effectively at the State and National Level

It’s December, and the 85th Texas legislature will be starting up next month.  This promises to be a very interesting session for people who have kids with disabilities.  Between Lt. Governor Patrick backing educational spending accounts, the 2017 version of vouchers, the redesign of day habilitation programs for adults with disabilities, and new attempts to whittle away at the freedom to decide how many vaccines your child will receive.  Opportunities to voice your opinion will abound in the next six months.

Advocacy groups often encourage us to e-mail or write letters, the staffers who work in the offices for senators and representatives tell me that phone calls are still the most effective way to express your opinion—way more effective than letters or email.

“Call my legislator??  I can’t do that!  I don’t know what to say and it takes too long!  I don’t even know who they are”  you say.

Follow the simple steps outlined below, and you will soon be a master advocate.  The turbulent times call for all of us to develop and hone this valuable skill.

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I’m so excited to be coaching advocacy on-line!

As the parent of a son with autism, I have been very successful securing services in the medical, school and social systems during these last eighteen years with my unique system.   This system is based around knowing his rights, knowing who to partner with,  and knowing how to defend those rights when partners don’t come throughsharing my passion.  This resulted in my son receiving tens of thousands of dollars of services over the years.

I’m excited to be  to empower other parents wishing to do the same for their child(ren)!  I’ll be doing this through on-line teleseminars and webinars to reach busy parents and professionals in a format that is most convenient–something you can listen to during lunch or at night after the kids are in bed.

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