Reflecting on the Birth of My Micropreemie on Her 10th Birthday

Ten years ago today, a severely premature baby entered my life. Weighing in at barely one pound two ounces, my first born child much more resembled a frog than a human. See the picture here for yourself. “Where’s the baby?” asked my mother when she first looked into the incubator of medical equipment….

where's the 10 inch baby?

This morning, after an extra-long good morning birthday hug with Milagro and the usual get-to-school-on-time routine with her younger sister, I decided to take a few minutes and reflect. I re-read portions of the online journal we kept during her agonizing 137 days of NICU (Neonatal Intensive Care Unit) hospitalization. I reviewed the many, many entries in her guestbook from around the globe.

A true understanding of the gift of a child who doesn’t see, whose hearing is also compromised, will evade most who are parents and just about all who are not…unless you’ve met our daughter. If you’ve met Milagro, then you know the happy, chatty, silly, intelligent, literate, curious, strong, joyous, scientific person she has become, little by little, day after day for 3650 days of her miraculous life.

I could write an entire book about the adventures, knowledge, richness and loving souls her birth and unique needs have brought into our lives as her parents. Maybe one day I will. But today I’m grateful to the NICU doctors, nurses, surgeons, retinal specialists, early intervention specialists, special education advocates, administrators, teachers, speech therapists, pediatric pulmonologists, ophthalmologists, audiologists and other “ists” that all entered our lives when Milagro needed them. And I will never stop remembering that had she been born elsewhere with this laundry list of severe medical needs, this story might never have happened and likely would have ended with a quiet little funeral.

Instead, Milagro’s story has been shared (and is still being shared) with parents and professionals around the world through the “Letting Your Child’s Wild Side Out” DVD that we created. My husband and I felt compelled to create this because positive images of children who are blind were not readily available to us during her infancy. When we desperately needed to see examples of how a baby develops without sight, when we needed to see happy blind children to give us hope for our daughter’s future, these images evaded us.

So, perhaps as a coping mechanism as she turned five, we decided to share our struggles, learning, family photos/video and triumphs with others to give hope and specific ideas to parents in our situation. We’ve shipped it to over 100 individuals and agencies on four continents. Although we rarely hear from anyone who purchases it, when we do get the rare email from a parent whose imagination and hope was sparked by watching Milagro’s story, it’s truly priceless.

Through it all, from Milagro’s point of view, life has simply been full of love, laughter, Braille books, writing in Braille, trombones, dancing, school days, marching bands, horses, marshmallows, fishing, camping and most recently, family camps with other blind campers and rollercoasters. She has developed tremendous confidence and self esteem, expressed as “I am a great student!” or “I am a great writer!” or my favorite “I am a great math girl!”  That she punctuates most of her sentences with exclamation points instead of periods also speaks to her exuberance with all things.

ropes course 30 feet off the ground at Camp Bloomfield

imitating art with her cane at National Federation of the Blind Convention

meeting other children with canes at NFB convention

exploring a Cal Band sousaphone her way

exploring Apache, Carole's horse








God indeed has answered all our prayers from those frightening early days after she arrived 100 days too soon into the world. She survived 25 ½ weeks gestation in the hostile uterine environment in which she found herself. She’s a physically fit, super-strong, healthy girl. She laughs many times a day and loves to make others laugh with her own brand of jokes and word play. And lately, from out of nowhere, she’s begun to say “Mama, you are a wonderful mother!” And “Papa, you are a great Father!”

Yes, indeed God answered all our prayers! Happy 10th Birthday my love! As we say in preschool, “Thank you for being born!”

On stage at school talent show
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Nine Eleven 2001 -Day of Horror and Creation

On 9/11/2001 I was in an east bay hospital trying very hard to keep my first child from escaping my uterus prematurely.

I had checked into the hospital at midnight, because it was the first day of the 24th week of my high-risk pregnancy; there was a very high risk of her coming early. Because miraculously we hadn’t yet lost her despite several scares, I had told my doctor I would be showing up at the hospital at midnight to be admitted on the first day of fetal viability.

After a fitful night of sleep, probably 3 to 4 hours total, I woke up, turned on the television, and that’s when I saw the terrorist attacks on the World Trade Center taking place. Completely in shock still, when the Pentagon was hit, I couldn’t stand it any more. Though it was only 6 something in the morning I had to call my husband. The images I was watching on TV were straight from a Tom Clancy novel and I was completely in shock.

My mother had flown down to California the day before to provide moral support to me during a very difficult and emotional time. At my bedside later that day watching the horrific images, she kept telling me I should turn the TV off because watching this was not good for me. On strict bed rest in the hospital, I had few choices for passing the time. I watched obsessively for hours and hours- nothing else was on TV. Bless my mommy’s heart-she and my hubby bought crocheting supplies later. 9/11 was the day I learned to crochet! Beginning that day, my mother and I made many beautiful baby clothes and blankets that all of my children have enjoyed (and enjoy still by dressing dolls in these same precious items.)

Luckily for all of us and for my daughter, who will celebrate her 10th birthday this month, she was not born that day. She stayed inside her mommy for another 10 days, the 10 days that proved to be the difference between life and death for her.

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A Summer Moment of Overcoming Disability

Overcoming? Is that the right word for what we did this summer?

My daughter who is blind is now nine. Last year she had her first two weeks of swimming lessons, as did her siblings. What a difference competent swimming instruction makes!

This year, we did it again –two weeks straight of lessons which culminated in two lifeguards holding my blind child’s hands and jumping into the deep end, nine feet deep.  By the time they did that, she had learned to hold her breath for nine seconds underwater and had overcome any residual fear of having her entire head submerged. Was I nervous? Not one bit! What’s safer than your daughter in the deep end with two life guards at her side?

Instead, I took a fast sequence of pictures the first time they jumped; made a video the second, just like I did when my seven year-old jumped into the deep end, holding the lifeguard’s floatation tube, (landing next to her instructor) at the end of her class.

I’ve been reflecting on that post I wrote a couple weeks ago and it’s finally hit me: this is the summer when my daughter who doesn’t see is doing the same things in the pool as her siblings…no exceptions. She’s doing back floats, front floating, lots of continues bobbing to practice taking breaths and holding breaths, etc. She can hold her breath underwater and make her way to the edge; actual swimming strokes are an “emerging skill” as they say in school.  Granted, my four year-old son isn’t doing any of these things, but he’s observing and learning the skills to prep him for those adventures the next few summers.

hanging out underwater with Papa

The summer of 2011 will therefore go down in my memory as the summer we overcame my daughter’s disability…in the pool anyway. I’ll take it. I loved it!




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Meeting Congressmen on Tuesday; Cleaning Toilets on Thursday

I’ve had an extraordinary six days flying back and forth (and again back and forth) between California and Washington D.C. A Friday night gala in D.C. where I accepted a very special award, a Tuesday lunch where I was introduced to three congressmen and several VIPs and a Tuesday evening event where I moderated a panel of experts from two cabinet departments, a congressional office and two private enterprises.

The latter was the first event tied to the findings and stories from my upcoming book Latinnovating: Green American Jobs and the Latinos Creating Them. It’s been an amazing week of networking at a whole new level and realizing how many people are ready to help me make this book a huge success.

But then today, my first “relaxing” day home after a week with two red-eye flights in four days, I felt the need to nest inside my home….so I cleaned out the refrigerator and cleaned my toilets.  It was the perfect contrast to the special events of the week, and truly reflective of the complexities of my life. I truly am blessed for the variety of activities I live each day!

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For parents raising children with disabilities – the best story you will read today

Mom, city schools never gave up on student diagnosed with autism

A mother’s advice

“As the mother of a student with special needs, Debbie Larson has been more than a mom. She has been a source of motivation, his advocate and a liaison between her son and school administrators.  She has learned about state and federal laws and built up her advocacy skills to fight for her son Kevin’s right to attend school and obtain a Regents diploma. Larson shared some things that she has learned along the way so that others may benefit from her experience.

“Patience and perseverance have been the biggest keys,” she said. “Believe in your knowledge of your child. If you know in your gut something is right or wrong for your child, stick to your guns.”

More specifically, she suggested for parents to learn about available testing and about their child’s disability. Learn how to become a full and equal team member with the school staff and remember that long after the professionals have moved on to other students, “you will still be the most important part of your child’s life.”

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Cal Alumni and Students: Ever wonder what the inside of the Stanford tree smells like?

This week I happily joined the ranks of published authors, as this Cal anthology came out after months collaborating with 34 other Cal grads and two motivated editors. When I Was There: Life at Berkeley 1960-2010 is now available via Amazon for $12.  It’s a collaboration of 35 UC Berkeley grads and a fundraiser for the Cal Alumni in Arts & Entertainment Club.

My essay begins with “Ever wonder what the inside of the Stanford tree smells like?” It’s titled “Inhaling the Stanford Tree” and yes, it’s based on a true story of the “borrowing” of the tree one spring day…….

Official book blurb at Amazon is: “From the 1960s to the 21st century, this anthology contains personal stories of life as a Cal student: heart-warming, heart wrenching, and humorous. Incoming freshman, students, and alumni get to see Cal as it was and as it is today. Written entirely by Cal alumni authors, part-nostalgic, part-pride, and part wonderment, When I Was There celebrates the many facets of the UC Berkeley experience.”

It’s just in time for Father’s Day too. Enjoy our work and please tell your Cal alumni friends, current students, etc.  We want this creative fundraiser to be a great success for this terrific Alumni Club. Oh yeah, if you do buy the book and enjoy the collection, please be sure to write a review at 🙂

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When they throw an IEP Party and Nobody Comes

For the first time ever, I went to an IEP meeting with a client and the educational team wasn’t there. Details on the communications snafu are being investigated by the big boss, but I thought it useful to write up how we handled it, just in case it happens to you.

The resource room teacher greeted us and started calling administrators, program managers and visiting classrooms. Turns out nobody knew there was a meeting scheduled, except the resource room teacher. As the advocate, my best course of action was to document the event, and then let the big boss at the district office know there’s a series process problem in his organization. I dialed his number, got him on the phone, informed him of the situation (of which he assured me he was already aware) and got his agreement that there would be an IEP meeting scheduled immediately. The urgency for the family to have this meeting and plan for the child’s transition to a new school was also important for me to communicate.

The resource room teacher documented that we were there and what had happened. The client and I requested and received a copy, and the whole thing was over in 25 minutes. That’s about all you can do.

On the bright side, client put in writing her request to have key players from new school attend subsequent meeting. I assured the client that the chances of this happening again were right about zero now because we’ve gotten their attention. These things happen; knowing how to handle them unemotionally and professionally is the key skill to learn.

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Attention Parents: Educators are Not the Experts of the Individual with Disabilities Education Act of 2004. You Must Become the Expert!

Attendees at my “You Gotta Know the Rules if You’re Gonna Play the Game” seminars have heard me say this, but here’s a few examples of what the words in this blog post title really mean.

I’m quoting administrators and educators in San Francisco Bay Area school districts below. These are things that have been said in IEP meetings I attended with client families in the last 2 months. All of these statements are false. They serve as further proof of what you’ve heard me say: your child’s educators and administrators cannot be relied upon to know the contents of IDEA 2004. You must know it and do your part to educate them on the misunderstandings that exist in their minds and throughout the school culture:

– “The school must provide all services during regular school hours.” (stated by a district’s IEP compliance officer)

– “There is nothing in the educational code that requires we build a unique program for every child with a disability. We’d never have the resources to do that.”  (stated by a high-level administrator)

-“We can only write IEP goals that we know we will meet.” (stated by an administrator with nearly 20 years experience)

The way we handled the first and third statements of factual inaccuracy during the meeting was by challenging the person that spoke the words to “please find that language in the federal statute,” then sliding the Wrightslaw Special Education Law book across the table.  Of course they couldn’t find it because it’s not there!

The way we handled the second statement was by reading aloud, for the benefit of the entire IEP team, the definition of special education from the statute. We then asked the administrator if he cared to revise his statement based on this new information and he only replied with “Thank you for reading the definition to the IEP team.”

That’s parent-led advocacy, that’s teamwork, that’s getting the meeting refocused on the unique needs of the child!

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5000 School Psychologists’ Reports Surveyed….the article

Those of you who have attended my seminars have heard me refer to this Wrightslaw article and the subject study of 5000 school psychologists’ reports. This article is a MUST READ for every parent with a child with a disability of any kind, especially if you’ve been made to feel it’s all your fault. If you’ve ever been led to believe that the school, the teachers, the administrators, the principal, the specialists, etc have no need for improvement when it comes to your child’s educational program, then this article is for you. It’s titled “The Blame Game! Are School Problems the Kids’ Fault?” Be warned, many react very emotionally to this article because it’s all happened to them, but the insight that it provides into school culture is quite invaluable.

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Behaviorial problems and Suspensions of Children with Disabilities

The topic of suspensions of children with disabilities has been heavy on my mind lately. Apparently it’s common practice for teachers and principals to treat children with disabilities, with IEPs in place, as if they had no disabilities or IEPs.  By that I mean they simply read the education code about discipline procedures and apply it immediately, with complete disregard to legal protections in place for this student population. In doing so, they demonstrate once again, their non-exposure to federal or California law about processes that apply to children with disabilities who require discipline.

Don’t let this happen to your child! Know what IDEA and California codes say about what a district must do when behavior problems are such that suspension (or expulsion) are real possibilities.

From the Community Alliance for Special Education (CASE) book titled, “Special Education Rights and Responsibilities,” chapter 8 “Information on Discipline of Students with Disabilities”, we see clear guidance that is not well known by administrators, principals and teachers. Print it out and give it to them – you’re doing them all (and your child) a favor!

Question 24. My child has behavior problems that may put her at risk of suspension and/or expulsion. Are there any special services or protections that apply to her?
In 1990, the California Legislature enacted Assembly Bill 2586 (Hughes). This bill, and especially its accompanying regulations at Title 5, California Code of Regulations (5 C.C.R.) Sections 3001 and 3052 have substantially changed the way school districts must serve special education students with serious behavior problems. These regulations do not apply to students who are only identified as “disabled” under Section 504 or to any other students. [*Grace’s note: yet another reason to ensure with child with a disability has an IEP, not a Section 504 plan!]
If your child is enrolled in special education and exhibits a serious behavior problem, the district must provide a functional analysis assessment by a behavior intervention case manager — who must have training and experience in positive behavior intervention. The behavior intervention case manager must develop a positive behavior intervention plan which:
(1) Identifies the function of the negative behavior for your child and
(2) Teaches him positive replacement behaviors that accomplish the same objectives but in a socially appropriate way.
A “serious behavior problem” is a behavior problem which:
(1) Is self-injurious or assaultive;
(2) Causes serious property damage; or
(3) Is severe, pervasive, and maladaptive and for which instructional/behavioral approaches specified in the student’s IEP are found to be ineffective.
[5 C.C.R. Sec. 3001(aa).]
When agreed upon by the IEP team, the positive behavior intervention plan becomes part of your child’s IEP. It must contain goals and objectives specific to the targeted behaviors, and it must describe the services to be provided in order to achieve the goals and objectives. [5 C.C.R Sec. 3001(f).] The behavior interventions selected by the case manager must be positive. That is, they must respect your child’s dignity and privacy, assure her physical freedom, social interaction, and individual choice, help her learn to interact effectively socially, assure her access to education in the least restrictive environment, and result in lasting positive change. [5 C.C.R. Sec. 3001(d).]
Positive behavior interventions shall be used only to replace specified negative behaviors with acceptable behaviors and shall never be used solely to eliminate maladaptive behaviors. [5 C.C.R. Sec. 3052(a)(2).] In other words, districts should not use techniques that simply contain or suppress maladaptive behaviors — they must simultaneously try to teach appropriate substitute behaviors.

Additionally, there is clear language in IDEA 2004 on what school districts are required to do when children with disabilities exhibit behavioral problems. It’s especially important to be aware of this language and your child’s rights, long before the child is started down the path of suspension, manifestation determination and expulsion.

Wrightslaw maintains an excellent depository of information specific to Behavior Problems & Discipline. You may want to start with this Frequently Asked Questions Document from the Office of Special Education.

Be sure to read the information about Functional Behavior Assessments (FBA) and Behavior Intervention Plans (BIP).

You and your child would be well served to request, in writing, a Functional Behavior Assessment at the very first sign of behavior trouble in school. From that a BIP is developed, with specific intervention strategies based understanding the root cause of the behaviors.

From that, the child can be taught appropriate behavior substitutions so that the behaviors are nipped in the bud and do not escalate. To reverse and minimize these types of behaviors requires these intentional, methodical steps. You as a parent must lead the IEP team down this path with your knowledge to save yourself and your child years of hard times in school.

Otherwise, there’s a high potential for escalating behaviors that are never understood, leading to suspensions and beyond because the people in your child’s school simply do not understand what the law requires them to do. Here’s your chance to become the expert, bring information to the IEP team, and help them avoid a non-compliance situation later.

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