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Posts Tagged ‘awareness’

You may have noticed that my writing has fallen off here. Quite a bit. Yeah, I know, I know. I don’t need to beat myself up about it, it’s my blog, blah, blah, blah.  The truth is, I haven’t been writing because I haven’t known how—or what—to share about the changes happening with my son. The words are jammed up inside my head, warring with the feelings inside my heart. I have discarded multiple drafts in an effort to find the words I need. I wrestle with what I want to say and how much I feel comfortable sharing. I still don’t have the answer; I am outside my comfort zone.

The irony is not lost on me.  Ever the consummate over-sharer— not afraid to tell my story to anyone who will listen, I have struggled with what to reveal. I’ve been grappling with finding my own truth and having to confront my own biases all while trying to find a new equilibrium. I have been forced to examine and to reframe my vision for the life I thought we would have.

The life I thought he would have.

It’s very much a work in progress as we continue to redefine, reshape and work our way through the morass of emotions and information.

*******

When my son was born extremely prematurely, he was substantially smaller than his gestational age and had a number of identifiable health conditions in need of immediate treatment –either with medications or surgeries. Life—mine and his—became about surviving another day, making it through another crisis.

Over the course of his 209-day hospital stay, and even after he came home, the focus was on making it through; through another season, another health crisis—whatever curve-ball life threw our way.  At that point in time, there was no way to predict how the cards would fall and no way of knowing what his future might hold.  Many professionals told us there were still so few children like ours who were old enough to really have enough data to be able to predict with any degree of certainty. So, we simply hunkered down and did the best we knew how to do with the minimum of supports we had. All we knew was that we were not quite out of the woods but not quite fully in them.

“When we let go of hope fear wins.”

Through the years, there have been so many well-intentioned people –from health care professionals to total strangers—who confidently told us not to worry, our son would surely catch up. They patted our shoulders in sympathetic displays and told us stories of their cousin’s friend’s uncle’s daughter or their neighbor’s son who were “born early, too; they caught up by the time they were in elementary school.”

When you don’t know what you don’t know and the prospect of knowing certain things is, well, scary, it’s all too easy to want to believe the well-wishers and the miracle-sellers who predict your child’s miraculous growth and feats of development. So, you put on the blinders and tuck your chin down and simply soldier on—hoping for and working toward the best, whatever that turns out to be. In the absence of even a hint at the longer view, we simply clung to hope and pushed our worries aside, taking it a day at a time, an issue at a time.

When our son was ultimately diagnosed with PDD-NOS, it gave us something to hold on to and provided a new context through which to view everything else. As time progressed and some of the more emergent health issues began to resolve or remained stable, we hit a kind of developmental sweet-spot.  Our son began to make tremendous progress and was rapidly gaining many skills which had been so severely delayed. In a seemingly short time, he blossomed from the child who couldn’t even sit up or roll over and who relied on a tube for all his nutrition, to a child who could walk and run, climb and eat, and who had taught himself letters and was showing signs of spelling and early reading skills emerging.

With that swelling surge of hope, we began to really push for supports and look for signs of academic progress.  Some early literacy skills were emerging, multiple word sentences constructed on his speech device – there were glimpses; glimmers of dazzling progress.

Until there weren’t.

Which is where we have been for a while now. I’ve struggled to understand for myself and to try to articulate for others, the degree to which things have stagnated; there’s been some significant regression in some areas. It’s best summed up in a brief conversation I had with our developmental pediatrician this week.

ME: So, if I have three different evaluations, done by two different entities over a two-and-a-half year period – and not shared between each other—and they all show pretty much the same thing, including almost no change over time…

Can I pretty much assume that (1) my son doesn’t test well and the tests aren’t completely accurate and (2) that there’s probably *some* kernel of accuracy there which speaks to a larger issue? The one we think we are seeing?

DR: (wrinkling her nose in a sympathetic grimace, nods her head) Yeah, I would make that leap. Let’s make an appointment to talk about it and find a new way forward.

Hope is important; it is vital. But so is the ability to see beyond the heart’s desires, to peel back the thin veil over your fears and really look at what is in front of you. I’ve been in that process for a while now –none of this is new data; it’s just data my husband and I have finally been ready to see in a different light.  The process of getting to this point has been emotionally messy. It’s been painful to confront our own prejudices.

For years we have both felt like we were sort of straddling two different disability worlds and not feeling like we solidly belonged in either one. Was our inability to settle in, to identify with any one group, born of denial and shame? Why is it so much easier for me to say, publicly, that my child has “mild cerebral palsy and autism” yet I cannot bring myself to declare just as casually that he is intellectually disabled—mentally retarded?  (Yes, I know the term really isn’t used anymore; that’s my point—I’m calling myself out on my own biases and misperceptions.)

Different words will not change my beautiful, smart, funny, loving child. Nothing will.  And yet, the truth of those same words cuts me to the bone, laying bare the fears and grief I’ve held at bay for most of my son’s life; I am the one it changes. I am the one those words challenge.

I hope I am able to meet it with half the grace, determination and heart with which my son has lived his entire life.

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So, um, yeah…about this Autism Awareness Month? I do have something to write about how my local Home Depot has completely embraced not only awareness in the month of April, but, well…I’ll tease you and tell you you’ll have to wait another day for that post. It’s worth the wait, I promise!

I was all set to post pictures and write pithy verbiage much sooner than this, but, well… Nik, apparently, had other ideas.  More specifically, his brain had other ideas. It began misfiring a few weeks ago with some breakthrough seizure activity. We upped his medication and thought we had it under control.  We were mistaken.

The past couple of weeks we’ve been not only monitoring Nik’s seizure activity, but increasing meds again and watching the seizures (or seizure-like activity) transform. We’ve had some unplanned phone calls and office visits with our fabulous neurologist and we have a plan in place.  It’s a short-term plan, but it’s a plan; it includes another ambulatory 24 hour electroencephalogram (EEG) in the immediate future. We need to know if we’re dealing with increased seizure activity or a severe movement disorder.  Think tics which occur at such a rapid and constant rate that they interfere with nearly all functioning and definitely with Nik’s safety and you’ll have an idea of what we’ve been dealing with.

Yesterday morning, we watched Nik lose consciousness for the first time in a long time. Then he napped for more than two hours. We’re pretty darn sure that wasn’t just a tic. So, we’re looking at options for short-term treatment until the EEG. Good times, my friends. Good times.

In the meantime, this week also threw us another curve ball in the form of Nik’s hearing; his hearing is getting worse and he now needs hearing aids.  Those will be fitted in just a couple of weeks.  That news was a bit of a kick in the gut at first, but I’m getting more used to the idea; I just hope Nik will cooperate with wearing them because we’re running out of options. The issue is not volume so much as loss at certain frequencies which fall right in the ranges necessary for speech comprehension.

This new knowledge about Nik’s hearing explains several things with which Nik has struggled during the school year— including attention, following directions, and reading skills. It’s difficult to know what is being asked of you if you can’t understand the words being said.  This change opens up a whole host of questions about what additional supports Nik needs that he is not currently receiving and whether the current placement is best for him. We’re left wondering how to deal with the significant vision impairment and hearing loss and autism and cerebral palsy in a way which allows Nik to play to his strengths versus remediation of weaknesses and in an environment which doesn’t become isolating.

We have no answers yet… just a lot of really good questions. I’m sure I’ll write more about this as it unfolds.

Our biggest goals and strongest desires for Nik are that he learns to read and to communicate more independently. I feel that if we can give him those skills, the rest will either come or he will find ways to compensate. Without those skills, his shot at independence is incredibly limited.

So, on the heels of a very emotionally difficult week (which included a scare about a broken iPad and a 2 hour trip to the nearest Apple store) —and because I may be just a smidgen of a Pollyanna, I am holding on tightly to this little nugget I shared on my Facebook page tonight:

OMG OMG OMG!!! I completely forgot to share this news:

Nik READ the word PRETZEL on a sign yesterday. I was like, “Sweetie, where did you see that word?” He pointed right to it on the sign. Then he promptly asked for ice cream. (We were at Rita’s so it wasn’t an odd request.)

HE.READ.

Yin and Yang. Yin and Yang. The journey continues.

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Did you know…April is Autism Awareness Month? If you don’t live under a rock, you’ve likely seen the latest figures released by the CDC last week regarding the rise in the rate of autism in the United States.  If you missed it, here’s the bird’s-eye view:

1 in 88 children  ~ 1 in 54 boys  ~ 1 in 252 girls

I haven’t yet had a chance to write my own post about what we are doing for Autism Awareness Month and World Autism Awareness Day. ( Read last year’s post here.), but I wanted to make sure I shared these posts from some of my very dear friends:

Mom-NOS: “The blue light reminds everyone who sees it that people with autism are…”
And as he stared out into the blue, he answered softly in a voice that came from a million miles away: “Awesome.”
(You can read the full post here.)

Jess: “Awareness is not the goal. It never has been. But it is the foundation without which no other change can happen.”
(You can read the full post here.)

Did you know that April is also the Month of the Military Child? Our military families are not immune to the effects of living with and loving family members with autism. In fact, they need our help.  Please, take the time to read the words of my friend, Rachel, who has been fighting tirelessly to change the inequities in the military health care system with regards to autism services.

In a post featured by Autism Speaks, Rachel writes: “As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.”
(Read the full post here.  It includes information on the Caring for Military Children with Autism Act and how to contact your Congressional delegate(s) to ask for their support of this important legislation.)

I hope you will subscribe to the posts from The Thinking Person’s Guide to Autism. All month long, TPGA is featuring “Slice of Life” posts from Autistic people of all ages. Because, awareness is great but ACCEPTANCE is so much more important.

And, finally, I’d like to encourage you to visit the Autistic Self Advocacy Network.  The name speaks for itself as the organization empowers Autistics to speak for themselves.

If you don’t live with autism, it may be hard to understand why it is so important to listen to the voices of those who actually are autistic. These are the voices which will help us shape the future for our children, open the minds (and doors!) of employers, educators, business leaders and politicians about what is possible for so many people who are otherwise marginalized because of myriad manifestations of autism. These are the voices which can help us establish more and better supports for adults with autism once they leave the school system.

Their voices can help shed a light on the tremendous potential within each person regardless of how autism affects them. The potential within each person may not be the same, but the potential to be so much more than what meets the eye is far greater than you might imagine.

Only through dispelling the myths and the fears, through support and acceptance —true acceptance, can we empower each autistic person to meet their potential.

So, um, I guess THAT is what we’ll be doing for the month —and always; helping our son find his “voice” and meet his potential.

What's not to love?!

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Shine your light down on me
Lift me up so I can see
Shine your light when you’re gone
Give me the strength
To carry on, carry on

Shine Your Light ~ Robbie Robertson

Sometimes, you drop a pebble into a pond and you can see the ripples.  You can know the effect your actions have. Sometimes, the ripples become farther apart —so much so that you think the motion has ceased.

And sometimes, just sometimes, the ripples may not be visible to the naked eye because they have taken on a life of their own. They have gathered a momentum you could not have predicted.  And that momentum is powerful and beautiful.

I’ll let the words of a commenter on my last post speak for themselves:

Heather wrote:

Beth, I just want to let you know that your story had a real impact on Mr. W. We live across the street from Mr. W. This evening he and his family stopped over to personally deliver your story and our blue bulb. In fact, Mr. W. purchased blue bulbs for everyone on our cul-de-sac! We will proudly shine our blue bulb in honor of the child and families that are affected by autism.

For all those who wonder if a simple blue light can make a difference, just ask Mr. W., his employees and his neighbors.

 

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“Never say never, for if you live long enough, chances are you will not be able to abide by its restrictions. Never is a long, undependable time, and life is too full of rich possibilities to have restrictions placed upon it.”

~ Gloria Swanson

 

When my son was about three years old, we spent the night in the hospital for a video-monitored EEG.  The EEG was actually ancillary to the reason we were in the hospital in the first place as he had been very ill with some sort of gastroenteritis and was very dehydrated to the point of needing intravenous fluids.  This was not our first hospital stay; my son was born extremely prematurely ans spent the first 209 days in the neonatal intensive care unit (NICU).  He has gone through more surgical procedures than most people endure in a very long lifetime.  Thus, he is no stranger to the invasive procedures inherent in a hospital stay.  He is also a trooper, putting up with things most of us would whine about.

On this particular stay, he suffered the indignities of being swaddled into a papoose board to allow the EEG technicians greater access and cooperation for placing the leads.  If you’ve ever had an EEG, you know the leads are numerous and the goop used to hold them in place is sticky.  A twenty-four hour EEG in the hospital is worse; the leads are held in place with the medical equivalent of model airplane glue which is dried with a hair dryer.  Did I mention, there’s somewhere in the neighborhood of twenty electrodes or more used for an EEG.  Did I also mention that my son hates to be restrained in any way?

My poor boy fought so hard that he actually got a hand free from the swaddling —ripping out an IV line in the process.  He never said a word through it all.  (Why would he?  He’s nonverbal.)  He kicked and screamed to bring the house down but he never said a word.

The following morning, my indignant child —who also was unable to stand on his own at this point in time— badly needed a bath.  His hair looked like it had been styled with an egg beater and glue and there were smears of dried blood on his arms and torso.  One of the very kind nurses offered to let us use the bathtub in the therapy room because it was big enough if I needed to get in with my son; it was our first time ever trying a bath in a real tub.  Nik was small enough that we were still using an infant tub at home for the convenience and security; his trunk control wasn’t strong then and we feared he might topple over in a regular tub so we’d simply never tried.  Despite the larger tub, I was fairly confident that this would be a simple enough procedure as my boy always loved bath time.

Never was a mother’s intuition more wrong than that morning.  The moment I placed my naked, filthy child in the tub —just to let him feel how it was different from his tub at home (and with no water in it yet)— he catapulted himself  to  a standing position holding on to the side of the tub and said screamed the first and only word I had ever heard him utter. “NO!”  The nurse chuckled and said “I thought you said he doesn’t talk.”  “He doesn’t,” I stammered.  We spent the next hour trying to calm him and clean him up as best we could before heading home. 

* * * * * *

Time is a great equalizer and many things have come to pass which we never thought we’d see.  My son began walking shortly before his fourth birthday.  In the blink of an eye, Nik seemed to go from a non-ambulatory child to the fastest of runners and most agile of climbers.  He even learned to love the water again by spending countless hours in my sister’s swimming pool over the intervening summers— many of those hours spent screaming and clinging to me or Niksdad.  He’s even learned to like baths once more and would be happy to play in the water long after it’s turned cold and his fingers and toes have gone wrinkly.

But, seriously?  Nothing could have prepared me for yesterday.

* * * * * *

It was an unseasonably warm day filled with tremendous noise and disruption which kept Nik off-kilter all day.  A crew was working to replace the roof on our home; it was noisy and the house had been tented to protect it from the debris being ripped off the roof.  Nik’s usually quiet, bright play area was anything but.  Despite it all, Nik seemed pretty sanguine about it all— at first.  As the day wore on, we could sense the tension in our son though we would have been hard pressed to identify anything more specific.

  Niksdad spirited Nik away for some quiet time at the park.  Despite Nik’s apparent imperviousness to all the noise, we could tell the disruption was taking a toll by the way he was perseverating on specific things which he hasn’t for a long time.  It was definitely time for a getaway! 

Despite falling asleep in the car on the trip home from the park, Nik was in better spirits when they returned.  He was also badly in need of a bath.  My husband removed Nik’s shoes and orthotics in preparation for “the b-word.”  “Are you ready to go take a bath, little buddy?” Nik squealed (nearly a shriek!) and began to dance in place like an excited pony.  Then, he bolted from the room, making a beeline for the stairs.  He paused just long enough to grab his daddy’s hand to pull him along.  My six-foot-one husband had a hard time keeping up.

It was one of those rare moments when so many things come together in an instant, so many skills taken for granted:

* comprehending the question
* motor planning and coordination
* desire to share the experience (of the bath)
* recognition of that desire
* appropriate interaction to request company
* expressing emotion appropriate to the situation

I wish I’d had my video camera at the ready.  Instead, all I could do was laugh. 

And marvel.

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[Author's note:  This is not an April Fool's joke.  These events really happened in my home. Today.]

Nik slept through most of the night; he woke for about an hour at 11:00 p.m. last night, asked for his book and had a temper tantrum when he did not receive it. (Tough luck, kiddo.)  I feel compelled to add that Niksdad and I lay in bed chortling with glee at both the impressive display of vocal histrionics coming through the monitor and the fact that this behavior was so, well, normal.

Nik went back to sleep around midnight and proceeded to sleep straight through until 8:15 this morning.  No, that’s not a typo.  In fact, we’ve had a few of those kinds of nights in a row now.  I haven’t mentioned it for fear of incurring the wrath of the sleep gods, but I honestly wonder if we’re turning a corner. 

To say the benefits of good sleep are plentiful would be a gross understatement.  Nik’s been eating better, playing more happily, cooperating more readily (swoon).  The leaps he’s making in communication have just blown us away.

Today, Nik managed to get his pants on and pulled up all by himself.  That alone is a herculean task for a child who has poor fine motor control, serious attention wanderings, and who won’t generally use both hands at the same time.  Oh, and he had to put down his beloved letters in order to do so.  HUGE.

Many of you know that we recently got Nik’s speech-generating device.  It’s been challenging to figure out how to tell you more about it since I am still learning “best practices” for implementing it and teaching Nik how to access what he wants to say.  It’s somewhat akin to giving a brand new reader the entire Encyclopedia Britannica and asking them to find the section on aardvarks. Overwhelming.

Nik —being, well, Nik— seems to have already figured out some of it for himself.  Just this morning he wandered over to his “green box of words”, turned it on by himself and proceeded to touch all the food choices to let me know he was ready for breakfast!  Granted, we had a few months’ worth of trials with a loaner so this is not completely new to us,  but Nik has been exploring and finding new words and trying them on for size.  I give him feedback for each word, trying to help him see that it’s not just a sound. 

Nik is discovering the power of communication.  He’s also realizing that it’s a reciprocal activity requiring a partner.  If I leave his device turned on and accessible to him while he’s playing, Nik shows little to no interest in exploring, unless he has something to say.  He already recognizes that this magical box is not a toy.

Ha! As I was writing the above paragraph? Nik turned on his device and told me he was hungry.  Using the actual word “hungry.”

The boy is voracious —not just for food.  He’s on a quest to learn all about the world around him and how to be in it, how to master skills to build on.  He wants to be with people and be social—he just needs our help in learning how to do that.  He has so much going on inside his beautiful head but doesn’t know how to get it out there.  That’s my job —to help him find his voice.  To empower him to tell us who he is, how he feels, what he thinks.

Our shared responsibility —yes, yours and mine? To listen when he communicates, to honor what he feels.  To nurture the potential he already knows is there.

April is Autism Awareness Month.

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Received today via email:

To Our Members and Friends in theDisability Community,

 

Lt. Governor Matt Denn has been in touch with us about HB 119, as has Rep. Terry Schooley and some others. All are assuring us that they will work with us to address our concerns about HB 119 and that the intent is to help kids with disabilities.

 

The Lt. Governor will be meeting with members of the DD Council, the Governor’s Advisory Council on Exceptional Children, and the State Council on Persons with Disabilities on Monday. Rep. Schooley is calling a meeting in early May as well.

 

Thanks to all of you who have called and e-mailed your legislators. It is making a difference. We will keep you advised as our discussions progress.

 

 

Theda M. Ellis, MBA, M.Ed.
Executive Director
Autism Delaware

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If you are autistic and live in Delaware, if you are the parent of or caregiver for an autistic person in Delaware, or if you know someone who falls into either category, please read the following items and take action to safeguard valuable services.

************

To our friends, family and members of the autism community,

Many things are happening related to legislation and funding that could have grave impact on our children and adults. Autism Delaware thinks it is time to advise you about our positions related to these issues, then we are asking you to write, call and meet with your legislators over these issues.  

  • School funding—H.B. 119 has been introduced which could potentially eliminate the summer program, give districts the ability to waive rules and procedures, and impact non academic programs such as respite. Please see the position paper we sent out earlier today.  At the same time, DOE wants to make changes in state funding which would open the code for the DAP [Delaware Autism Program]. Both of these possibilities would eliminate safeguards to educational services offered through the DAP such as changing staff ratios and effecting the summer program. 
     
  • Adult services—Potential cuts for the Division of Developmental Disabilities Services will reduce adult service contracts by 10% and could eliminate services to new graduates. This would mean there would be no programming for those who have left school and reduced staff salaries and services levels for those who do receive services. In one case, family members would have to stay home to care for their child and in the other; safety and quality will be reduced.
  • Insurance –Children with autism are not covered by insurance. Autism Delaware is proposing requiring insurance to cover ABA and other therapies needed by our children.  

The board, staff, and the legislative committee have been working actively with the Lower Delaware Autism Foundation and other disability organizations. Specifically we have done the following:

 ·         Established statewide legislative priorities for the entire autism community and established a weekly presence at the Legislature in conjunction with LDAF
·         Testified at Joint Finance Committee about the impact of funding cuts and the proposed elimination of services to students who will be graduating in June 2009
·         Met with Secretary Landraf to address our concerns and identify our priorities
·         Created a resolution to establish Autism Awareness month
·         Supported Cookie Day with presentation of the resolution in the House of Representatives and followed that up with a “Meet & Greet” event for members and legislators
·         Participated in Disability Awareness Day with further legislative visits
·         Drafted legislation calling for insurance coverage of ABA and other therapies for our children which should be introduced before the end of the session
·         Scheduled meetings with State Superintendent Lillian Lowery and Rep. Terry Schooley

During this process, we have met with and spoken to Senators Connor, Simpson, Sorenson and Venables and Representatives Atkins, Barbieri, Booth, Bunting, Cathcart, Gilligan, Hall-Long, Hocker, Hudson, Q. Johnson, Katz, Kowalko, Kovach, Lee, McDowell Schooley, Short, Schwartzkopf, Walls, Williams, and Wilson.   

With so many issues hitting at the same time we need your assistance. Please make an appointment with your Senator and Representative; write a letter or make a telephone call about the impact of these potential cuts on your family. If you need assistance finding your representative or writing a letter, please contact us and we will help you and/or provide a template for a letter. We are all working for our entire community, but each of us must work to assure our child’s future. It is up to us.

 Sincerely,

 Rob Gilsdorf, President
Autism Delaware

************

Position Paper on H.B. 119

Prepared by Autism Delaware and the Lower Delaware Autism Foundation
We have also used an analysis by Brian Hartman of the Disability Law Program.

House Bill 119 has been introduced to amend Title 14 of the Delaware Public Education Code. The stated intent is to allow more local control to districts over expenditures of state funds so they can save money.

Key Sponsors:  Rep. Schooley, Sen. Sokola
Reps. Bennett, Brady, Q. Johnson, Keeley, Longhurst, Manalokos, M. Marshall, Mitchell, Mulrooney, Plant, Scott, Viola, Walls, Sens. Blevins, Bushweller, Cloutier, Hall-Long, Henry, Katz, Peterson, Simpson, Sorenson, Venables

This bill is unacceptable and we need you to call your representative and senator to oppose it immediately. The State Code for DAP has been in place for 30 years, providing the infrastructure and staff ratios for a highly successful and innovative program.  The bill will negatively impact the Delaware Autism Program and educational services for students with autism (and other disabilities) in the following ways:

  1. It deletes the extended school year.
    Specifically, the bill deletes Title 14, Section 1703, subsections (e)and (f) which call for 12 month programs for children with specific disabilities including autism and allows extension of the school year for children with autism to be 1,425 hours. This is highly objectionable and will result in the loss of extended programming for hundreds of students with extreme disability profiles including our students. It totally takes away our children’s protection for an extended school year.
  2. It allows waivers to any regulation, rule, policy, and some statutes.  Any district and any individual school would be authorized to obtain a waiver of any regulation, rule, policy, prescribed course of study, and some statutes based on unclear criteria.  Everything is waivable!  History instructs that waivers often become the norm. Rather than meet the standard, the norm is to simply obtain a waiver.  The exception becomes the rule and legislative intent is undermined.  This could impact all our staff ratios including teacher/student, speech, psychologists, etc.
  3. The Legislature’s historical approach to waivers is to limit authorization by both discrete context and time and to monitor waiver effects.  For example, the authorization for a waiver of the 1-22 teacher/pupil ratio is specific to this context, must be reapproved annually, and is subject to analysis by the Department of Education (Title 14 Del.C. §1705A-1705B).  In contrast, H.B. No. 119 has no limits in context or time and contemplates no review.  Thus, schools and districts could be given indefinite or permanent waivers of some State laws and all State regulations.  So, what may begin as a temporary change to address a budget crisis can become permanent.
  4. The bill authorizes districts to cap hours of instruction for individual students with disabilities based on a unilateral administrative decision.  Such decisions can only be made by an IEP team with parental involvement, not through a unilateral decision by district administration.  Moreover, to avoid illegal discrimination (14 DE Admin Code 225; 34 C.F.R. Part 104), the minimum hours for students with disabilities cannot be less than the minimum hours for students without disabilities. 

This bill ostensibly gives districts greater local control. Local control will not help our students and we know that districts will not give parents all the information they require to build appropriate educational supports into the IEP. We need to maintain the code that guides the Delaware Autism Program to ensure that our students have staff ratios, appropriate specialists, an extended school year and respite. Parents fought for this code 30 years ago, and parents need to fight today to maintain it. 

Rob Gilsdorf                                                     John Willey
President                                                          President
Autism Delaware                                             Lower Delaware Autism Foundation

 

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April is Autism Awareness Month.  There are any number of erudite and passionate posts about the subject —some I agree with wholeheartedly and others significantly less so.  I’m not jumping into the fray as my hands are more than a bit full right now with being aware of my son’s very real, very intense needs right now. 

 

 

I am grateful to all those other writers who have the energy, the stamina, and the vision to stand and speak for those of us who are hunkered down in the trenches and feeling under siege.  They often provide me with hope and encouragement.  Sometimes, they provide a much needed laugh or the comforting recognition of a kindred spirit.  Sometimes, they take a stand that is so anathema to my inherent beliefs that it helps me get clearer about where I stand on some of the more controversial elements of autism advocacy.  I don’t always like what these writers have to say but I appreciate their right to say it and their role, I hope, in pushing people off the fence.  It’s hard to advocate for something if you don’t know where you stand.

 

Here’s where I stand.  I don’t believe my child is “vaccine injured.”  Nor do I believe my child is “trapped” inside a shell waiting to be brought forth by some miracle cure.  And, perhaps shocking to some of my readers, I don’t think Nik’s pain and intestinal issues are related to his autism.  Certainly not in the sense that I believe resolving those issues will make him any less autistic.  I do believe, however, that resolving those issues will make him a more physically comfortable autistic person. 

 

Right now we’re going through a hellish time, I admit.  But I don’t attribute that all to Nik’s autism and I certainly don’t think that my life is awful or that Nik’s life is awful.  We’re just going through a crappy patch right now. 

 

 

This, too, shall pass. 

 

 

Until it does, I’ll continue to go to bed early, take the good times as they come, and rely on the community of parents I’ve come to know through my blogging and on-line efforts to buoy my spirits, to touch my heart, to speak the words I wish I had the energy to speak, to walk the walks and raise the funds, and to continue to advocate in the ways they do with integrity, dignity, and respect for our loved ones.

 

Awareness, my friends, takes many forms.  Advocacy can occur on any scale.  Mine is just smaller and closer to home these days.  To borrow the words of my friend, GoodFountain, autism awareness has to mean Nikolas awareness —first and foremost.  I think I’m doing okay there.

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