3 Areas Where Autism Awareness Matters

Working parents with Special education Special needs children including Autism ADHD Learning disabilities  Employee benefits Employee assistance Employee support Voluntary benefits. 504 Plan, IEP Program

April.  Autism Awareness Month...30 days of focus on autism spectrum disorders.  A good thing for those who need to learn more about it.  Yet for families living it every day, there's another need.  Planning.

1.  School

To effectively advocate for your child in school, understanding the diagnosis is important.  Yet what's essential is understanding your child's individual needs.

Autism Spectrum Disorders (ASD) is not one thing, but encompasses many things and each child is unique.  While there are definitely similarities in terms of areas of need, the diagnosis does not automatically correlate to their placement in school. 

Many children/teens with an autism spectrum disorder are fully included or spend part of their day in mainstream classes.  Their needs will continue to change as new skills are acquired, as they move from childhood to the teenage years, and as environments, expectations, and demands change.   And this means monitoring their growth and progress and making changes to their educational program as needed.

The focus always needs to be on today, yet planning for tomorrow and the many transition points, both small and large, means ensuring that school is building a strong foundation and that you're keeping a keen and careful eye on what's coming next.  Remember...keep the bar high. 

2.  College

If you think college isn't a possibility, think again.  More and more colleges and universities are creating programs to support students with autism spectrum disorders and many have added supports as well.  And while it may seem like a long way off, the transition requires carefully planning and preparation...starting now.

If higher education, whether community college or a four-year university, may be the goal, their transition plan must address it.   And this means IEP goals that go far beyond:  "Megan will research post-secondary education options" or "Tim will visit two colleges".   Preparation for college means direct instruction of skills including self-advocacy and executive function skills (e.g. organization, time management), not only in their transition plan, but in measurable IEP goals as well.

If colleges are already being explored, plan to evaluate each school's disability services department.  Some families disclose their child's disability before acceptance, while others wait until acceptance and after the college decision has been made.  No matter the path, you need to access all available information to determine the right "fit" for your child.

3.  Work

The need for parents to think about and plan for the transition from school to employment and to evaluate a child's interests and abilities must begin early - i.e. middle school. 

Many companies, such as EY & Microsoft, are recruiting employees with ASD, and smaller businesses are specifically hiring young adults with these needs and strengths.  School must be teaching the skills needed for independence, and employment is one of the key areas.

Finally...

Parents already know that one day, perhaps sooner than expected, school will end and so will the services and supports received.  Whether college is the next step or securing a job, both areas have different rules and expectations, requiring skills that go beyond getting a B on a spelling test or doing well on a science project.

Preparation is key.  And we all have a part to play -- families, schools, clinicians, agencies, colleges, employers, and more.

Children with autism spectrum disorders become adults.  They become part of the fabric of our world with astonishing strengths and gifts to share.  And they also become adults with needs that continue to require support.

April may be Autism Awareness Month, but we'll really be integrating those with autism spectrum disorders into every aspect of life when the awareness is ongoing.  That's when we'll know that it no longer requires 30 days of focus and attention.

 

Autism, ADD, and The Holidays...When Ho-Ho-Ho Turns to No-No-No

Working parents with Special education Special needs children including Autism ADHD Learning disabilities  Employee benefits Employee assistance Employee support Voluntary benefits. 504 Plan, IEP Program

For parents of children with autism spectrum disorders, ADD/ADHD, sensory, or other special needs, the holidays can be nothing short of a nightmare.  One that continues for more than a sleepless night.  Knowing your child's abilities, limitations, and preferences and adapting accordingly can make this time of year far more bearable, for everyone involved...

Visiting.  If family and friends are coming to your home, make sure your child knows when (day and time...and use a countdown timer as well if that helps) and that he/she can go off by themselves (with mindful supervision) whenever they wish.  Insisting that they greet people at the door or that they sit with everyone to "catch-up" could be a meltdown or escape moment waiting to happen.

If you’re heading to the homes of others, do everything possible to ensure a short visit (brief is better)…that as few “new” faces are there as possible (try to visit during an "off" time)…and that a quiet place is shown and available to your child upon arrival.  And, if your family or friends are unaware of your child’s diagnosis, sharing this information may be the greatest gift you can give...to yourself, your child, and to them.

Peers.  Seeing the cousins in a group or having the neighbors visiting in one evening may create major social issues, even if your child or teen may otherwise have a positive experience when it's 1:1 or a small group.  Give your child every opportunity for social success by limiting who comes when, making sure your child knows the plan. and changing things if it appears as though the timing might not be right.

Food glorious food.  Be aware of what’s being served on those platters and in those bowls.  If your child is on a gluten-free or other restrictive diet, bring the foods that you child can eat and in the typical dishes or bowls, particularly if your child is younger.  Now is not the time to introduce new foods and fancy ways to serve them.

Attire.  That brand new dress or shirt or those fancy socks could cause sensory issues that ruin a holiday moment before it begins.  Allow your child to dress as they prefer or introduce the "new attire" well before the official wearing, asking them if they want to “dress it up” a bit.

Music.  If music is soothing or if Jingle Bells happens to be a favorite, play music as much as possible during the holidays.  If attending holiday religious services is planned and if it's a new experience, a brief introduction is better than expecting your child to sit through two hours of services.  Crowds, tight seating, sounds, smells ... each alone may trigger sensory and auditory overload, so anticipate.  Arrive early to allow your child to see the environment.  Sit in the back.  Bring a snack.  And leave when it’s clear that enough is enough.

Chanukah, Kwanzaa, and the Christmas tree.  Lighting the Chanukah candles and the Kwanzaa feast can be a wonderful gatherings for family, but your child or teen may find these activities difficult.  And keep in mind that the blinking lights and singing ornaments on the Christmas tree (or Chanukah bush) can also create problems and may trigger sensory overload.

Shopping.   The mall with its crowds and loud noises are a recipe for a meltdown or resistance to even going.  If the picture with Santa is important, find a garden shop, bookstore, or other smaller venue where Santa pictures are being taken.  And if your child feels about Santa as many do about clowns (i.e. forget it), use photoshop to put them in the picture.

Schedules and routines.  The holidays mean changes which can result in havoc for children and teens alike.  This is also a time where therapies are on hiatus, creating even more need for structure and predictability.  Prepare a visual schedule – with your child’s assistance if possible – to show the plans for the days and nights.  And try to continue with some aspects of your child's therapies at home (another reason why ongoing communication with providers is essential).  Preparation is key.

Flexibility.  More important during the holidays than at any other time.  Bedtimes can be pushed.  Snacks can be expanded (unless there are dietary issues).  Time spent on video games can be extended.  Sleeping in their clothes is just fine.  The key is monitoring your child and making adjustments accordingly.  And listen to their wishes as these can be more important than anything in a box.

Gifts.  If the expectations on Christmas morning exceed the pleasure, forgo it.  Some children and teens find the pressure of opening gifts and then having to appear overjoyed more than they can handle.  In fact, many prefer to open their gifts alone.  Christmas Eve or Christmas evening after dinner work just fine too.  And ask family and friends what's in those nicely-wrapped packages as gifts with sounds or requiring two hours of assembly can be meltdown-provoking.  Same with your gifts.

The most important part of the holiday season is showing your child - based upon their personality, needs, expectations, and limitations - that the holidays can be fun and that you're listening to and watching for their cues.  This will make things far more enjoyable for everyone and will bring you a little "ho, ho, ho" in the process.  Happy Holidays...

Autism Isn't A Day Or Month

I'm a big supporter of raising awareness of causes and issues, encouraging people to rally to bring about change.  Yet when it comes to autism, a day or a month simply won't suffice. On various media outlets over the past few days, individuals have been sharing their insights into the realities of autism.  Some were identified as "experts" which, in my opinion, is a term that needs to be affixed carefully.  There was one - a mother - who spoke about raising her child with autism, sharing the realities with an emotional overlay that was as real as it gets.  This is the true expert.

Two of the other expert perspectives in particular stood out to me, each warranting a response and further discussion.  And while there may be those who might question from where I am gleaning my insights or upon what soapbox I'm standing, I'll say that after spending 15+ years in the trenches in this arena both professionally and personally, I'll take my chances.

One of the experts I'm referencing stated that parents need to push for services for their children.  Absolutely true.  Could not agree more nor cannot overemphasize the importance of parents taking charge in this regard.  Yet there was, and continues to be, a critical oversight here and one that is consistently overlooked.  It's that parents need to learn *how* to push for services for their children, particularly in school where the lion's share of these services need to be accessed.

There is an assumption, and a misplaced one at that, that parents automatically or miraculously acquire these skills ... that somehow these skills simply appear after their child receives an autism spectrum diagnosis.  And this assumption even occurs with parents themselves who, in their jobs or professions, may have skills that they "assume" will transfer to parent advocacy and school interactions, but sadly do not.

Just like the social skills/social thinking that their children need to learn through direct instruction, parents also need to be taught how to navigate through the educational arena in order to secure the services that experts continue to state (and parents know) their children need.  And need now.  I often say that special education requires a master's level of skills that continue to evolve over time.  Telling parents that they need to work hard over the long haul to get their children what they need is one thing.  Teaching them how to do so is another thing entirely.

The other expert on a different media outlet stated that as children reach high school, they need to learn life skills.  What?  As they reach high school?  Ever hear the expression "too little, too late?"  Here's what's wrong with this statement.

Part 1 -- we first need to acknowledge that there's a stigma attached to the phrase "life skills" so we need to rename it.  Parents (and others) equate it with things that, for many children on the autism spectrum including those with Asperger's Syndrome, simply do not apply.  But there's another huge bucket of life skills that they most definitely *do* need to learn (and be taught) in order to have any hope of successfully transitioning after high school graduation into college, employment, or independent living.  Once we eliminate the barriers created by the words "life skills" and broaden what it means, we can then begin to ensure that these skills are taught starting in preschool...and for all children.

Part 2 -- when the teen reaches high school, it's far too late to start thinking about the "life skills" they will need to transition into the adult world.  Even though transition planning is now supposed to begin at age 14, most schools pay little attention to the skills our children need to live as adults in the world.  We don't start to teach reading when the child is 12 years old, so why would we wait until the child is a teen to begin teaching these critical skills?  Skills that are considered "life skills" need to hold equal weight with academic skills in terms of their importance.  And for some children, they're even more important.  This isn't an either/or scenario and parents should not be forced to choose (and this happens frequently) between helping their child improve their reading level or how to complete a job application or to live with a roommate in college.

The attention to autism this month and any month helps to raise the volume of discussion about a diagnosis impacting families, businesses, and our society.  And whether you believe the recent CDC stats or not, the reality is that there are millions of children and teens today with an autism spectrum diagnosis growing up to become part of our adult world.  As future employees, tomorrow's college students, and the next generation of parents themselves.

Examining how we're approaching autism is not an easy topic nor task, but real change is never easy.  What it does require is for us to honestly assess whether we're providing parents with what they need to effectively help their children succeed in school and beyond.  And it also requires us to closely examine whether we're truly doing what we need to do to help our children reach adulthood as prepared as possible.  This requires more than a day or month.  It requires a lifetime.

 

When One Small Step Is Anything But Small

People tend to believe that it's the big things in life that have the most significance, but I don't necessarily agree.  Small things often make the greatest impact, and one group of people know exactly what I mean. If you're the parent of a typical child, there are so many "firsts" and accomplishments that the small steps often get lost in the shuffle.  Not so for parents of children with an autism spectrum disorder.  For these parents, life is all about watching for the smallest possible step.  About knowing the minutes, days, and months of effort that went into making this step happen.  It's often only those closest to the child who can understand and appreciate what this is all about.

Ever sit and watch a flower bloom?  You rarely see anything, but look away for a day and the changes are often amazing.  Parents of children with autism spend much of their lives closely watching for that bloom to happen ... for that "one thing", that small step that will show them that their child is learning to speak, respond, play, understand.  And they see it when it happens.

This past week, I spoke with a parent who was sharing how her child was finally able to tolerate something that had been - up to that point - intolerable.  For most parents, this would have been seen as a "get over it" moment, but not for this parent.  It was a huge obstacle that impacted her child's ability to function and the family's ability to function as well.  Anyone who would say that a small step isn't a major milestone is someone whose life hasn't been touched by autism.

Think about it this way...most people stand back and look at life like admiring a huge mural painted on the side of a building.  But for parents of children with autism, they're standing right up close, seeing every single stroke of the brush.  When your child struggles on a daily basis in a world that assaults their senses and challenges their abilities, every step forward is anything but small.  These parents know what they're looking for and even if they don't, they still see when something changes or some progress is made.  That's because they're always looking and hoping for it.

That infamous line..."One small step for man, one giant leap for mankind" are words that ring true for each and every parent of a child with autism.  Every small step their child makes is a leap indeed, for it paves the way for a future of possibilities.  And possibility is that wonderful thing that keeps parents moving forward.

Life is about giving and receiving and I don't know any single group of individuals who give more than parents of children with autism.  So isn't it wonderful that one of the things they receive is the ability to see these small steps happen right before their eyes?  Whoever said that you can't watch a flower bloom never knew what they were looking for.