The SPECTRUM Alert: An Autism Elopement Protocol for Schools

elope1edit_edited-1On October 4, 2013, Vanessa Fontaine’s worst nightmare came to life.  Despite having warned her autistic son’s school that he was prone to wandering, her son ran right out the door of his classroom – past cameras and a security guard – and vanished.

 

Her son Avonte’s remains washed up from the river three months later.

 

In May of 2014, a nine year old autistic child from Bellevue, Nebraska, left school – unnoticed, surprising –and frightening–his mother by walking in the door and asking for a snack.  Her son functions at the level of a 5-year-old and crossed two busy streets to get home, with no understanding of how to do so safely.

 

Again, in May of 2014, another nine-year-old child on the autism spectrum left his Oakland Park, Florida school early and walked 12 blocks home.  He was found trying to get into his home through a window and later described chatting with a complete stranger along the way.

 

These aren’t the only incidents of autistic children wandering from school (commonly referred to as “elopement”)..  Following such stories, we usually hear school districts “express concern” and pledge to “work with parents to ensure their child’s future safety.”  I’m sure they mean it and will probably try.  But what do they say to mothers like Vanessa Fontaine?  Her son’s school can’t work with her now.

 

The vast majority of U.S. schools do not have an autism elopement protocol.  It’s not because they can’t afford it; an effective protocol like the one I will propose here is mostly free.  The reason schools don’t have one is simple — they don’t realize they need it.

 

In the not-too-distant past, many students on the spectrum would have attended special needs schools.  Such schools have a depth of experience with elopement.  But mainstream schools usually do not.  Inclusion has been a big thing in American education, with autistic students now attending class now with their typical peers.  However, these students do not always have the supportsthey need.  Teachers and staff rarely receive autism-specific training.  Human beings make mistakes.  Doors get left open.  And, in the chaos and panic of discovering a child is missing, bad split-second decisions are made in the absence of an effective plan.

 

Today, 1 in 68 children is diagnosed with autism.  Statistically, 50% of those children will wander.  Of those who wander, 70% of them cannot effectively communicate verbally.  And autistic children are often drawn to water,  making a beeline for it when given an opportunity to do so.  In fact, of the children who are found dead as a result of autistic elopement, 92% will be found in water.

 

If a school district’s plan to address autistic elopement is merely to wait for it to happen and call police, they are planning for tragedy.

 

After consulting with members of law enforcement, here is a protocol I’m suggesting to my child’s school district.  I’m calling it The SPECTRUM Alert for Schools.  The important thing to remember is that this alert/code will necessarily look different for each school.  To be effective, it must be planned by individual schools based upon their location, size, design, proximity to water, etc.  The SPECTRUM Alert is not a ready-made plan, but a roadmap for designing one .

 

S  (Search grid)    In conjunction with law enforcement, the school and surrounding community should be mapped out on a search grid.  If the school is fenced in, there should be a perimeter walk to determine any areas vulnerable to elopement.  From there, the grid should expand outward a mile or two, taking into account any and all bodies of water, dangerous intersections, train stations, parks, playgrounds, etc.  School personnel not directly supervising students should already know and have practiced reporting to their assigned search areas.  Note:  Water should always be searched first.  No matter what.

P   (Pre-identification)    Each child prone to elopement should have on file a Quick Reference Sheet.  This should be compiled by the school with the assistance of parents and possibly personnel who have worked with the child previously.  It should contain the following information:

1. Child’s identifying information

2. Presence of GPS tracking technology

3. Current photograph

4. Child’s current level of communication

5. Child’s documented interests, behaviors, preferences, aversions, etc.

6. Health considerations

7. List of possible locations the child might go within the search grid

E  (Law Enforcement liaison)    One person’s job should be to call law enforcement immediately.  This should happen while the search begins – not following it.  In addition to contacting 911, this is the person who should contact parents immediately.  The liaison could also commence activating a “phone tree” already set in place by parents.  That phone tree might include friends, family, and neighbors willing to assist a search.  The child is likely to know these people well and may respond to them more easily.

C  (Code)    Typically, schools have alert codes.  In my district, they are based on colors and represent different emergency situations.  Students and staff know how to respond to each code.  A code should be called on the intercom.  This will keep students out of the way of the search party.  Teachers should be instructed to quickly look into the hallway and out windows and alert the office if they see the child in question.  In upper grades, it might also be possible to have students assist in a search in teams on school grounds.

T  (Training)    All school personnel and school resource officers should receive training in autism.  Such training can often ward off elopement incidents to begin with.

R  (Relationships)     Law enforcement, school personnel, and school resource officers should be encouraged to develop positive relationships with autistic students, who are often very literal in their thinking and may fear the police, based upon what they may have seen on TV.  Classroom visits in non-emergency situations should occur so that in an emergency ,these children will not fear police and jeopardize their recovery.  As soon a child prone to elopement enrolls at the school, the faculty and staff (including cafeteria workers, bus drivers, etc.) should be notified.  They should see the child’s photo and learn his or her background information.

U   (Understanding)     Common triggers that distress students on the autism spectrum should be understood by all staff, including substitute teachers and volunteers.  By stressing the Understanding component of this plan, schools can often avoid the situations that might prompt an autistic student to elope from school.  Because special events in gyms, auditoriums, and cafeterias are often painful to the senses of autistic students, there should be a careful plan to avoid subjecting these children to trauma.  A trigger for elopement could easily go unnoticed in the chaos of an activity day.   This component is the most powerful part of this plan, though the least understood if effective training of staff doesn’t occur.

M  (Media)     Radio, television, and social media are powerful when it comes to locating missing children.  A media strategy should be considered by the school district and law enforcement for use with autistic elopement situations.  Facebook would be a particularly useful tool in small cities.

 

Ideally, the SPECTRUM Alert will not be confined to the school.  Local law enforcement could enhance this alert system by allowing special needs families to pre-register a vulnerable child with the department in the event of a wandering incident outside of school.  Schools with personnel that could be made available to police departments for autism training would make this even easier.

 

The SPECTRUM Alert protocol would cost a school district little to no money.  Most of it involves planning with personnel already on the payroll.  It’s simply a matter of a school making the choice to plan for an elopement incident and putting it into practice.

 

Human beings are by nature inherently optimistic creatures.  We tend to go through life not prepared for the worst out of a self-protective need to believe it won’t.  But schools cannot afford to do this with regard to autistic elopement – any more than we can afford to not prepare for fires, tornadoes, or armed intruders on campus.  As educators, are in loco parentis.  It’s the prime directive for our profession – to do for our students what we would do for our own children.  Including the most vulnerable ones –like mine.

 

It’s time for every school district in this country, without delay, to adopt a SPECTRUM Alert for Schools.

The Bears in the Park: Anxiety and the Autism Parent

????????????????????“Worry is the thief of joy.” – Unknown

I read with interest the other day a post by psychiatrist Dr. Gail Saltz, “This Is You on Stress.”  Being stressed out all the time, I’m becoming increasingly aware of its effects.  Dr. Saltz says stress is an evolutionary thing, a fight or flight response triggered by a perceived danger.  In dangerous situations – such as the possibility of encountering bears in a park- it keeps us aware and can save our lives.  The problem, she says, is when you are removed from the danger but the fight or flight instinct is still going.  That kind of anxiety is harmful.  She goes on to suggest some strategies for breaking the cycle of unhelpful stress when danger isn’t nearby. I thought about that for a while and how to use those strategies to stop stressing and calm down.   I thought about those bears in the park.

And that’s when I realized.  It’s no wonder parents of severely autistic children are increasingly being diagnosed with anxiety disorders, PTSD, depression, etc.  It’s not because of their children.  No, our children give us just as much joy as any others.  It’s because there is rarely a time when you aren’t in the park looking around for all those bears.

What and who are these bears?  There are many.  Elopement, bullying, failure of school districts to provide an appropriate IEP, medical and dental appointments, unfamiliar situations, loud noises, lack of autism awareness, lack of autism acceptance, loved ones who don’t get it, judgmental stares and comments from strangers, inaccessibility from grocery store carts to Disney World, respite care, insurance battles, lack of appropriate housing for autistic adults –and on and on.

So we rarely leave that park.   And we stand – fight or flight response at the ready – clutching the hands of our children all the time.  While trying to live our lives in all the necessary ways.  Meeting the needs of other children.  Nurturing our marriages.  Paying bills.  Working.  Caring for older family members.  Taking care of ourselves – which, like this list, always comes last.  But we do all of these things while anxiously looking around, listening, and facing those bears when we encounter them.

I’d like to follow Dr. Saltz’s suggestions.  I’d like to try meditation, thinking myself calm, and reminding myself that I’m out the situation.  Except I’m not.  I don’t have the luxury of letting down my guard.  Because if I do, the bears are still there.  My child will not receive an appropriate education.  He may be traumatized by people not trained to work with autistic children.  Someone might forget to latch a door.  A door within minutes of busy intersections and bodies of water.  He might be treated as a disorder and not a child.  No, the only time I can relax is when he is safe in bed and the house alarm engaged.  Even then fears of my own mortality (who will take care of him?), his education, his health (feeding issues), and his future haunt me in those witching hours of worry.

The problem is these fears aren’t unjustified.  My anxiety isn’t occurring in the absence of danger.  These dangers are real.  Because this world is not ready to welcome my son.  A son who will one day outlive me.  A son whom I fear will not – if needed – be cared for by those with good hearts and a desire to allow him as much independence as he is able.  A child whom – in the wee hours of the night – I lie awake envisioning as an old man.  An old man – perhaps with no family of his own – lying in a bed and taking his last breaths with no one to hold his hand.

Yes, those bears are all around me.

I don’t want stress to win, but it’s ever present.  It steals from me sleep, laughter, and peace.  Joy?  It’s fleeting.  Found in bits and snatches – and always bestowed to me by my children.  Yes, it’s there.  But it’s often stolen by the thieves of anxiety and fear.

And in my darkest moments, I fear that lack of joy is turning me into a bear.  Someone who sometimes fails to appreciate the little things.  Someone who will fail to pass on joy to my children – who deserve that in their mother.

Some talk about a national autism plan.  Do we need one?  Yes.  Should it resemble any of the depressing and misleading suggestions we’ve heard so far?   No.  But we must begin to address the needs of children, adults, and families like mine.  We must begin to teach our citizens, our schools, our medical personnel, and our law enforcement how to interact with autistic persons.  We must learn new ways to teach, engage, employ, and live amongst those who experience the world differently.  And we must begin to plan for the futures of the most disabled on the spectrum.

Until then, I remain perpetually on watch for bears.

If you liked this post, you might also enjoy “It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset.”

 

 

Say the Word: On Delaying an Autism Diagnosis

autismwordSomewhere out there — right now — is a parent who just heard something she didn’t like. Someone who loves or works with her child suggested her precious, perfect baby may have a form of autism spectrum disorder.

There are signs. Her child is most likely developmentally delayed in significant ways. He may have walked late, often skipping crawling altogether. He may lack the fine motor skills other same-age peers have already mastered. Physically, he may lack the strength, balance, and coordination to do the typical things young children do, such as ride a tricycle, jump, run, or hold on tight when taken for a ride on daddy’s back. Perhaps most significant is a delay in speech. He may have developed a few words and lost them, or he may have never made any kind of vocalizations. In addition to not speaking, he may not understand the speech of others. And, if his name is called, he may not consistently respond — if he responds at all.

In addition to developmental delays, he probably has exhibited some quirky behaviors. He may not play with toys appropriately, preferring spinning, lining up items, or flicking strings or non-toy objects. He may not be able to tolerate certain textures, touches, sounds, or lighting. He may throw sudden tantrums that go far beyond any prior conceptions of the word. He may appear to be present physically — but live in a world of his own. Or he may not have many developmental needs at all, yet be unable to connect to others, read social situations, or tolerate change of any kind.

And though his mother probably already noticed these delays and odd behaviors, she is angered when the subject of autism inevitably comes up. She thinks she has good reason.  Continued on HuffPost Parents…

Flappiness Is on the Huffington Post!

I submitted this to Huffington Post — and then decided they must not have liked it, jumped the gun, and posted it here a few days later.  Today, HuffPostParents published it!  (Which was a real thrill.  It’s been on my Writer Bucket List.)  So -just  in case you missed/understandably ignored my email – here’s my latest.  ;)

 

Dear Friend Whom My Autistic Child Just Rebuffed

callumtackleI know.  I saw.  You, friendly person that you are, walked up to my autistic child in public and tried to say hello.  And he got really, really upset with you.  I saw your concern.  Felt your embarrassment.  Knew you never meant to upset him.

When I see you, you ask about him.  When you’ve met him before, you always make a point of speaking directly to him – even when it seems he’s not paying attention.  You’ve even had really positive interactions with him in the past.  You did everything right.  You didn’t go rushing up or speak too loud to him.  You didn’t put your hands on him without being welcomed to do so by him.  You follow me on Facebook, read about the cute things he does, and celebrate his successes.  You’re a good friend and a great cheerleader.  I appreciate you.

And because of that, I don’t want your apology for “upsetting” him.  That’s because you didn’t.  It’s likely several things did, but it wasn’t you.  He was just overwhelmed a bit by the world – new sounds, sights, and experiences.  He was busy trying to process all of those when you happened to innocently walk up and try to interact.  For whatever reason, that’s when his pot boiled over.

He wasn’t judging you, disliking you, or even declaring how he feels about you in the future.  He was simply over capacity and expressed it the only way he knows how to – with a big fat “no more right now.”  Only he doesn’t yet have those words.  He isn’t able to convey exactly what was too much.  He meant to say, “I have had enough.”  But it wasn’t you.  It just seemed like it.  And I could tell by your red face that it felt like it too.

So, I’m begging you.  Please don’t slink away and give up on getting to know him.  Please don’t feel that he just doesn’t like you.  Please don’t feel like you did anything wrong.  He may have been overwhelmed emotionally and sensory-wise, but his mind is quick.  He knows the difference between someone who is good to him and someone who is not.  If you continue to gently engage with him when you see him, he’ll learn that you’re not to be feared –and you’ll learn there is nothing to fear from reaching out to him.  Before you know it, you’ll have a little buddy who expands your world – just as you will expand his.

I want you to know that your efforts to engage with my child are beautiful to me.  Too many people are afraid to try – afraid to “upset” him.  Afraid to simply ask what’s the best way to get to know him.  But you?  You put yourself out there and sent a message to our family, to him, and everyone in the immediate area – that he is worth knowing.  Not everyone knows that.  But you do.

And that’s why I want so very badly for him to get to know you.  Because clearly you are worth knowing too.

 

 

 

 

 

 

Prayer for the IEP

praying-hands-in-close-view_2247878Lord, this day means so very much.  This is the day decisions are made that will impact this special needs child’s life.  Some of those decisions will be good.  We might fail in others.  We will keep trying.  We will keep believing. And we will continue advocating. Today, we ask for:

 Calm – so that we may hear one another and communicate effectively.

Truth – for, without it, we cannot set a correct course.

Focus – so that we may avoid distractions and meet our goal.

Compassion – to acknowledge the needs of others.

Wisdom – to recognize when we need help and/or more information.

Strength – so that we may speak up for what is right.

Flexibility – to seek solutions that will benefit – first and foremost – the child.

Resolve – to carry out the plan we make, even when it becomes inconvenient.

ieptableAnd most of all…

Faith – in this child and our belief that he can learn and that we will make a difference.

May our minds and hearts remain open today –and we remember to place this child’s needs ahead of our own.

In this we pray.  Amen.

Hear Me Roar: Inspirational Songs for IEPs (a Playlist)

noteThanks so much to my wonderful followers on Facebook for contributing to this playlist.  There are some great suggestions — including several I’d never heard before.  Play this in the days leading up to your child’s IEP, mediation, resolution, etc. — and go advocate for your child!

Let me know if you think of any songs I should add.  :)

It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

I'msorryDear [             ]:

I’m sorry.

I’m sorry to have ruined your day, angered you, or caused your supervisor to watch you closely.  I know what bad days, frustration, and job pressures feel like.  It wasn’t my intention to cause you problems.  It may not feel like that to you, but it’s true.

I know that –when you aren’t busy being the person I had to get unpleasant with –you’re probably a very nice person.  I’m sure that your family loves you, friends think you’re wonderful, and you’re an active church member.  If circumstances were different, we might be friends.

But the great person whom I’m sure you are intersected with a road I’m traveling to meet the needs of my special needs child.  To put it simply – you got in my way.  In some way significant to my child, you failed to do your job.  Do I think that makes you evil?  No, I think that makes you human.  But the issue isn’t how I feel about you.  The issue is a vulnerable little boy who cannot speak for himself – my vulnerable little boy.

There are a lot of reasons why you might fail to do right by my special needs child.  You may be overworked.  You may not have enough resources.  Your boss may be a jerk—or clueless.  You might not have the knowledge or time to do what is being asked of you.  Most likely, you are simply a part of an educational system that has been broken for so long no one knows what it is supposed to look like when it works.  Most likely, you probably already know that – but fear of rocking the boat or drawing parental attention caused you to go along with what you knew to be wrong.  You may feel helpless about that and wish it were different.  I’ll let you in on a secret – I feel the same way.

But feelings and wishes – over truth and action- are luxuries I don’t have.  I can’t blame it on the system, lack of money, or others and go about my day.  You see, this child is mine.  And you and I know all too well who will step forward to advocate for my child if I don’t – no one.  Not really.  They’ll think he’s adorable, sign him up for an hour of therapy or so a week, and set goals for him low enough for him to achieve in a year. They’ll finish his IEP in 15 minutes and tell themselves they’ve done their jobs.

But it won’t keep them up at night.  It won’t drive them to learn and do more.  They won’t feel a sense of panic as precious time is lost.  It won’t incite their indignation.  It won’t be their child, so…

It won’t be personal.

But his well-being is my purpose for being here.  Having made the decision to have and raise a child, he shot straight to the top of my priority list – even if he isn’t at the top of yours or the system you work for.  If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.

So, unfortunately, that’s where your path and my path have crossed.  I’m sympathetic to whatever caused you to be here.  But my job is incompatible with looking the other way while you don’t do yours.   No matter what the reason.  It’s just that black and white – even if it isn’t completely your fault.

This isn’t going to change anything.  I’m still going to be there.  I’ll still be watching closely.  I’ll be polite, but I will be that parent.  The parent who writes the letters, makes the phone calls, requests the records, researches the issue, analyzes the data, knows the law, and makes it her mission to know more about my child’s disability and issues than you or anyone you work with.  Which means there may come a time when his needs and rights are in conflict with your convenience, budget, or the status quo.  Again, I’m sorry about that.

But I want you to know– it’s not personal.

Update:  This post has touched a nerve with some folks who may not be familiar with my writing or blog.  This post is not anti-teacher.  Teachers aren’t usually the problem.  I know.  I AM a teacher.  Most are wonderful, including my son’s.  I’m talking today about the folks who make the real decisions that affect special needs students and their classrooms.  And, while I would never be rude with anyone, I can and will do whatever is necessary-within the law – to ensure my son receives what he has a right to under federal law. 

Losing My Convictions

buttingheadsNot so very long ago, I knew what I thought about things. I could debate them point by point with relative ease and felt comfortable with the conclusions I reached. I identified myself as a libertarian-leaning Republican – conservative both fiscally and in terms of defense, but socially liberal. Central to my thinking is the sincere belief that most things the government undertakes turn out to be disasters. I am suspicious of decisions made by committees and generally believe the fewer cooks in the kitchen the better. And – raised by a lawyer – I’m equally suspicious of new laws and constitutional amendments, believing them to often be the result of emotional reactions rather than well-considered policy.

 But convictions are a funny thing. Sometimes all it takes to shake up your belief system is a personal experience with what you didn’t know before. The fundamentalist Christian mother who finds herself loving a gay child. The pro-life couple whose amniocentesis shows a baby whose genetics are incompatible with life. The anti-marijuana legalization police officer who is racked with pain from bone cancer and nausea from chemo. The fiscally liberal woman who finds taxes and regulations strangling her small business. Life is like that sometimes, and irony mocks us.

 Five years ago, I had many convictions. One of them was a sincere belief that the Department of Education was the worst thing to ever happen to U.S. Education. My belief in that wasn’t based merely on my party’s stance. Unlike a lot a politicians, I actually graduated from a college of education. I have been trained in ridiculous theories, participated in wastes of expenditure, and seen firsthand the effects of an educational culture that values test scores over knowledge. I still believe that U.S. educational policy is absurd and that each new generation is just a bit more ignorant than their parents. It’s why I send my daughter to a private school, and I won’t apologize for that. But now I find myself unsure of my prior held convictions – and that’s because of Callum.

 You see, I now know that I’m a hypocrite. I’m a hypocrite because I am now depending upon the Department of Education and federal law to protect my child from a substandard education. If it were not for the IDEA, my son would not have any of what he has now nor would he have anything I am fighting for him to receive. If it were not for state oversight, school districts would not provide for his special needs. IDEA safeguards are the only big sticks available for me to carry as I walk softly through the IEP battleground. Now I find myself dependent upon the very agency I generally abhor. So, I’m a walking, talking hypocrite. And that has a lot of implications for many of my core beliefs.

 What else do I hold to be true – until I have walked in the shoes of one directly affected by it? What other political philosophies are incompatible with the needs of other human beings just like me? How can I gratefully accept that which I have decried – or voted against?

 Becoming the mother of a special needs child didn’t just shake up my world; it shook up my mind. I am not lost so much as I am now aware of everything I don’t know. Suspicious of every viewpoint I hear. And for a very simple reason – most people know not of what they speak. Not really know. They’ve heard about it. They’ve read about it. They imagine how they would feel if it were them. They compare it to something they know that isn’t entirely (or at all) related. And they espouse – and vote –from the comfort of their unaffected lives.

 That realization has left me without many convictions, cast adrift in a sea of political parties who don’t represent me at all. Reading social media commentary from friends and family who don’t yet realize the ease of becoming a hypocrite as well – when life runs up and knocks them over on the playground. People who haven’t yet had to fight for the well being of another. Who haven’t been desperate, shunned, violated, sick, divorced, disabled, broke, or any of the myriad occurrences that can shake up one’s world. People who weed their friends list based upon political parties or religious views. People who don’t know – or yet know – what they would really think if it happened to them.

 I see very little of the world in black and white these days. It’s all a bunch of varying shades of gray. Which makes it hard to wholly embrace any viewpoints at all or cheer any platform. Instead my mind immediately goes to “What if it was Bronwyn? What if it was Callum?” And then I have my answer., at least for me. The problem is that no political party exists whose mission statement is to do unto others as they would have done unto them. And none of them will admit “Clearly, what we thought would work didn’t. Let’s start over.” Which is exactly what we need with regard to education, health care, taxes, drugs, and so much more. Until that happens, color me unimpressed and label me an independent.

 In the meantime, World, please just…be kind to one another in how we define our problems. It’s rough out there.

“I don’t believe in superstars
Organic food and foreign cars
I don’t believe the price of gold
The certainty of growing old
That right is right and left is wrong
That north and south can’t get along
That east is east and west is west
And bein’ first is always best
But I believe in love
I believe in babies
I believe in mom and dad
And I believe in you.”

-Don Williams, “I Believe in Love

 

 

Why Autism Families Are So Angry with Disney

walt-disney-castle-20299809Life for an autistic child is full of no’s.

No, those children don’t want to play with you.

No, you won’t be able to tolerate this restaurant, theater, store, etc.

No, we can’t/won’t/don’t service kids like you.

No. No. No.

As parents of severely autistic children, we hear a lot of no’s as well. You get so used to all the no’s that they cease to surprise you anymore. You expect them. You are prepared to fight them, but lose a lot. And you steel your heart for many disappointments.

Like, for example, the disappointment you feel when your child’s school pictures arrive — and it’s evident the photographer made no effort to spend the extra time necessary to get a good one. The expression is awkward, sad, or simply…vacant. Every year. Every time.

Or the disappointment you feel when your child cannot tolerate the sensory assault of participating in scouting, youth sports, children’s gyms, or art classes. And you have to carry him out the door screaming, suffering, and worse — brokenhearted.

The disappointment you feel in your fellow man when they stare, become annoyed, or make comments about your child’s autistic behaviors. Behaviors your child cannot control. Behaviors that still don’t prevent your family from needing to run errands, go out in public, and have fun on occasion.

And so you grow thicker skin, and you try to help your child to do so as well. You tell yourself that the no’s don’t matter. You try to smile when well-intentioned people tell you that you “must be a special person” to be given this child. But you don’t feel very special. You feel helpless. You see your child trying so hard to navigate a world that he cannot fully access. You see the future — and all the no’s that will certainly be coming. All the normal expectations of college, marriage, children — that aren’t necessarily in the cards for your beloved child. You try so hard to make every moment as beautiful and wonderful as you can.

Because — in the dark hours of worry — you sense the need to fill your child’s memories with as much joy and love as you are able. Because you know there will come a day when you are gone. And there might not be anyone left who will care if your child receives more than just shelter and food. There will come a time when there are no more special days just because.

Knowing this is coming, you seek out people, organizations, and opportunities so that your child can have as many iconic childhood experiences and joys as he is able. You learn to embrace the yes’s and those rare days in which your child gets his heart’s desire. You learn to savor present joy when you can — while simultaneously mourning the joys that may never be. Your entire family becomes skilled in adapting. Because the world adapts little — even for little boys and girls besieged and overwhelmed by it.

Recently, special needs families have been disappointed again.  Continued at What to Expect…