Accessing state services and planning for the future

Accessing state services and planning for the future

When I started writing this blog, Wonder Boy had long since been approved for services through our state’s Office for People with Developmental Disabilities (OPWDD). When we first applied for them, he was maybe 4 years old, and we really didn’t know anything about what services we’d get/want/need and we definitely didn’t fully understand the process.

The first thing to know is that at least in our state (and I suspect in all states), some of the supports from the state are funded by Family Support Services (FSS).  In our case there are certain programs such as respite reimbursement which are funded through state FSS funding.  These programs are accessible once you’ve been approved by OPWDD. Then there are “Medicaid Waiver” services such as community hab and day hab- these are funded by Medicaid money, and the “waiver” means that they waive the parents’ income when processing the Medicaid application.  Mind you, you still have to fill out the application (I recommend having help for all of these steps, by the way), and then you have to wait, even though a person’s disability should theoretically be enough to have it approved right away.  Wonder Boy’s Medicaid application sat on a desk for four months.

Getting approved for FSS or Waiver services is another matter- in the case of Wonder Boy, it meant that all the reports from the doctors and his school and his Early Intervention (EI) team all had to be submitted.  Then, because of his young age, we had to drive an hour away to meet someone who would determine once and for all if he should get these services.  Then once they decided to give him provisional eligibility, we had to go through the process of selecting a Medicaid Service Coordinator (MSC).  This person helps families put together the supports they will need over the years.  Because of how closely this person will work with a family, it’s important that this be a positive working relationship.  You can always switch to a different MSC if the relationship is not working out.

A lot of these little details were lost in the recesses of my mind, because our lives are so incredibly chaotic.  So we fast-forward to present day, as we go through the process all over again with Speedy.  This time things are moving a little faster- in part because I know what to expect, but also because he’s an older child and therefore we have more data from the school to show them.  Between school data, medical records, and the Adaptive Assessment that we were required to complete, we had everything they needed.  The Adaptive Assessment is a test filled out by us and by his teacher, and then scored by the school psychologist.  It shows his strengths and deficits in basically all areas of his life.


Yesterday, I received the phone call that he was deemed eligible.  Now we move to the stage of determining what services he needs.  Then that request will need to be approved by a committee.  THEN we will need to select an MSC, and THEN we can apply for Medicaid Waiver services.  IMG_4948

The hurdles are many, and the process can really be challenging.  Yesterday I was finally able to breathe for the first time in months.  And then we’ll get over the next set of hurdles, and the next, and the next…..

It’s about setting them up for what they’ll need for the rest of their lives.  And it’s hard.  Believe me, I know.  And it’s really really worth it.

Sensory-friendly performances: The good, the bad, the happy medium

Sensory-friendly performances: The good, the bad, the happy medium

I’m about to say something that might seem to go against the grain, but I’m going to say it anyway.

Sensory-friendly performances aren’t inclusive.

There.  Feel better?  Me too.

Here’s why I feel this way.

When a play or a movie or, well, really anything goes about its normal business, things are likely to be loud, bright, overwhelming, and busy.  We can certainly acknowledge that this can feel downright volatile to anyone with “different” sensory needs.

I feel like organizations are SO hellbent to provide “autism friendly” or “sensory friendly” experiences that they forget one vital fact: This doesn’t provide inclusion, it provides a way for those with sensory needs to experience the thing separate from everyone else.  And that, my lovelies, is exclusion.

I’m gonna tiptoe out on a limb here, but what if – gasp – every performance or every day was sensory friendly?  Who would that harm?

What if places with sensory rooms at certain times (only during specific events) had those spaces (like a room to calm and regroup) ALL the time?  And why have they not done that yet?

Look, I want my kids to go to this thing or that thing just as much as anyone else.  And when we see a “sensory friendly” showing of something I do smile.  At first.  And then I realize that my kids won’t experience the thing along with their neurotypical peers.  They will get to share it with other kids like them, but they would get to do that organically if sensory friendly was just a THING that we could find any day of the week.

So why can’t we?

People/companies seem to think it’s out of reach.  Or maybe they think that one performance out of 20 that is done as sensory friendly is sufficient.

I can tell you right now, it’s not.

The beginning of the most important journey of our lives…a.k.a. Chapter 1.

When we had our first son together seven and half years ago, life was relatively simple.  I had been married before, as had my fiancee (now my husband).  I had ended my previous marriage and we shared custody of my two sons from my first marriage.

So there we were, with a new baby and two pre-teens.  Wait.  Did I say it was simple?  Okay, it wasn’t at the time, but when I look at how life is now and look back to that time, we had it kind of easy.  We were making very little money but by gum, we had LOVE on our side, right?

Starry-eyed and raising this brand new life, we were totally unprepared for what would come a few years later, when our second son was almost one year old.

Can anything really prepare you for that moment when you realize that things may not be progressing typically with your child? I remember moments when he was about 8 months old when I’d be holding him and rocking him to sleep.  I’d remember the scene in Mr. Holland’s Opus when his wife realizes that their son is deaf. And on some level, I knew.  I didn’t know what I knew, but I knew.

A few months later, my husband voiced his concerns to me. “He doesn’t look at us when we say his name or when we speak at all.  I think something’s wrong.” He was right- our very smiley, happy child was no longer looking at us.  Most kids at 11 months old are at least looking up when a parent says something, but he did not.  He was happy, but distant. At first we thought it was his hearing, and we talked with his pediatrician.

She referred us to the Ear, Nose, and Throat doc in town, and suggested that we call Early Intervention so that they could come and assess his development.  He was missing out on some of the standard developmental milestones.  By the time he was a year and a half, he would get tubes in his ears to hopefully bring an end to the many ear infections he had as an infant. At the same time, he was receiving speech therapy and “special instruction” to help him learn how to play with toys in an appropriate manner (don’t get me started on that, I have a whole separate post on “appropriate” play).  He was seen by social workers and specialists galore.  He had one hearing test after another, all inconclusive.  A month after the tubes were put in his ears, he had what’s called a “sedated ABR”, or auditory brainstem response study.  This is a test which measures the brain’s response to sounds, and the patient is sedated.  This was our first conclusive test- he had perfect hearing.

Finally, we had a better idea of the direction to head. This was not medical at all, but developmental. His pediatrician referred us to a developmental pediatrician at a hospital two hours away.  They had a long intake process and were booking quite a ways out.  Four months later, almost exactly one month before his 2nd birthday, we were given his official diagnosis of Autism Spectrum Disorder, a Global Developmental Delay (he was delayed by about 18 months), and a Sensory Processing Disorder.

Luckily for us, we’re a rather “clinical” household, as I describe us to physicians.  That is my way of saying “don’t tiptoe around it, just say what it is”.  We’d already done a lot of research by diagnosis day, so this was no shock to us.

By the time he was three, he was aging out of Early Intervention services, and we found him the most perfect integrated preschool.  He was the smallest and youngest in his class, a tiny little non-verbal boy with a pacifier in his mouth and two small plastic animals in his hands everywhere he went. He communicated by pointing at things, and using the few ASL signs that we’d learned as a family.

He developed an incredible bond with his teacher and his aides, people that I am so grateful to continue working with.  About midway through his second full year at the preschool, he began to speak.  I finally heard his voice, and I sobbed.  From there, he continued to flourish, and now he can speak at length about his favorite subjects.

When he finished his second full year (including summers) at the preschool, we braced for him to move into the school district, in a gen ed classroom with a fabulous teacher and a 1:1 aide.  Now he’s in 1st grade, reading well and writing well.  He’s still got needs, and we’re meeting every one as they come up.

All along our path, things have just kind of…aligned in our favor.  I can’t say why, but I do know that no two families travel this path in the same way.  We bring to it our own personal experiences, knowledge, heart and soul.  And no two days are the same, either.  Some mornings I cry on the drive to work.  And then I dive headlong into helping other families so that I can feel some sense of purpose.  Other days are more easy to manage, and on those days I realize how lucky we are to have kids who have taught us so much more than we ever thought possible.

On to chapter 2…

Navigating food issues

I may have mentioned this a time or two, but the boys really struggle with food.  For Wonder Boy, it’s a combination of being 5 and preferring to eat nothing but chicken nuggets and string cheese (he does eat a few more things) every meal for the end of time and also having sensory needs which are not met by many standard “kid” foods.  For example, anything soft or creamy is totally out of the question, with the possible exception of ice cream.  He won’t eat regular yogurt (soft, creamy, and full of stuff that he doesn’t trust), mac & cheese (though he will eat pasta with parmesan cheese), hot dogs, the list goes on.

For Speedy, it’s a combination of medication which prevents him from being super hungry and a major anxiety about…everything.  That anxiety at mealtime is typically connected to wanting to please his parents, aide, and teacher and being terrified that he’ll fail.  No child of 7 should have to feel that level of anxiety, but it is with him 100% of the time.  Because of his meds, he really can’t eat a lot at any one time, and because he may leave food on his plate, in his mind this is letting us down.  This all manifests as stomach cramps, and the cycle just continues to get worse.

As a result of these things, we’ve come up with some alternatives.  For Wonder Boy, we focus on just getting protein in him and the key vitamins and nutrients.  As long as he’s had a peanut butter sandwich (no jelly, please) or chicken nuggets we’re happy with the protein, and in a pinch he can have a meal replacement shake.  For Speedy, we feed him many tiny meals throughout the day, and his aide at school has been an integral part of making this work.  At dinner, we allow him to stay focused on something like music or an educational program on television, and then he’s more likely to actually eat without anxiety.

Recently, we signed them up for a program at one of the universities which allows Occupational Therapy students to work directly with kids.  They play and provide the kids all sorts of input, allow them to crash, swing, roll, and spin.  Then all of the kids go into the kitchen, where they work with the students on having fun with food.  The students provide the kids with an example of something fun they’ll make with food, usually a design or an animal.  Then they give the kids the food items needed and see if they can recreate the design.

Along the way, they ask the kids if they will smell the food, then “kiss” the food, then move up to touching the food against their teeth.  Wonder Boy got as far as the kiss yesterday with one of his least favorite foods, celery.  This was huge for him!  Last week they made animals with apple slices, raisins, string cheese, and sugar snap peas.  He now will eat sugar snaps as long as I make him a “mantis” out of his food.

Admittedly, this mantis is missing four legs…but you get the idea.

I know that eventually mealtime should get easier.  Having raised up two other boys, I’ve watched them move through various food phases and ultimately become people who really enjoy a wide variety of items.  In the meantime, we navigate each food encounter with the precision of a highly-skilled CIA operative.  At times sneaking in the stuff they need, and negotiating as though our lives depended on it.

How to raise self-advocates

I think it’s safe to say that I’ve always advocated for what I want and need, when I know what that is.  My parents did a bang-up job, whether they knew it, of teaching me to ask for what I want and need.

Look at that face.  I was definitely up to no good.

In high school, I figured out very quickly how to get close to teachers and get things such as slightly better grades (offering to do all the photocopying goes a long way) and even a cup of coffee from the teachers’ lounge during my junior year.  Hey- I never said I used my powers for good!

Honestly, I’m not really sure what my parents did to create this person that I am.  I seldom make much sense to myself.  On the outside, I may appear social and easy going, and there are times when I truly feel that way.  But the inside may feel totally different.  And then other days, I feel giddy and child-like, but must maintain a professional exterior:

Photo by Dave Burbank Photography

I think I’ve come a long way in the last few years.  I remember a conversation that I had with a friend and some of her friends (I really didn’t know them well, and it’s possible that I did not make the best impression).  We were talking about what to do when our kids need services at school but the school isn’t on board.  I stared in amazement at the people around me who were all saying they didn’t think they could insist on what their kids needed.  Um…what’s that now? As I listened to them say these things, I saw something very interesting happen with their body language.  They physically became smaller.  Their bodies, their voices, everything about them shrank.

My reaction was to get bigger, louder, more powerful.  “These are your children.  If you don’t advocate for them, who will?”

Blank stares.

“No but really!  Your job here is to go to the school district and demand for the services that your child needs to succeed!”

I may have lost them at that point, which is why I say I’ve come a long way in the last few years.  In part because I’ve been working directly with families and want to be professional because I love what I do!  And in part because I’ve learned more about who I am through raising the boys. I’ve learned how better to connect with people to help them figure out what they need, because I’m simultaneously doing that at home.

I think I was trying to write about how to teach our kids to be self-advocates, and it may seem that I’ve wandered away from that path.  I believe that it’s a two-step process.

  1. We must learn to advocate for our needs as well as those of our children.  We should learn to recognize what is truly needed and not be afraid to ask for it.
  2. Through that, and through teaching our children that we respect that their bodies and their needs are truly theirs, we will have done what we are here to do.

My husband and I watch the show Speechless, a sitcom about a family who works together (and sometimes work in spite of one another) to get what they need.  One of the kids in the show (J.J.) has cerebral palsy, and the mum (Maya) is a staunch advocate who fights for (and usually gets) what J.J. needs.  We love this show because it does not steer away from using humor as well as talking about some really serious issues faced by those with disabilities.

In the most recent episode, Maya helps a group of other parents by teaching them to demand what they need.  For the first time in a long time, she feels that she’s really doing something incredible by helping these parents find their voice.   It goes sideways when the district realizes that her son is getting way more services than they’d ever provide…(watch the video clip below)

Maya and the District

SPOILER: In the end, she works with the principal to find cost-saving solutions to meet everyone’s needs.

Just for fun, because he’s awesome, here is a video of Zach Anner sharing his views on the show:

On a side note, did you know that Micah Fowler, who plays J.J. DiMeo on the show, actually has cerebral palsy?  In a bold move, Hollywood actually cast an actor into the part he was born to play.  It doesn’t happen often, and it’s reason number 1 why this gal doesn’t watch shows about autism (because despite the fact that 1% of the world’s population is autistic, Hollywood can’t seem to turn up an autistic actor).

So.  To sum up:  Ask for what you want, even if you think you won’t get it.  Teach your kids that their bodies and their thoughts and feelings belong to them.  You won’t be sorry at the result.  I promise.

The art of inclusive play

Yesterday I was very fortunate to be able to attend a conference held at SUNY Cortland about inclusive play.  My colleague and I heard from speakers about building accessible playgrounds which meet the needs of people with disabilities as well as those without, and the importance of having two groups of people with really very different needs be able to play- not just side-by-side, but actually together.

Seriously, why is my head so gigantic?

The first speakers were from an organization called Shane’s Inspiration, and I think I’m in love with their mission and their vision:
“Our vision is to foster a bias-free world for children with disabilities.  Our mission is to create inclusive playgrounds and programs that unite children of all abilities.” (taken from their website)

They don’t just create the playgrounds, they offer programs with schools so that kids without disabilities can be paired up with kids who are different from them, kids who may play very differently than they play. There is a whole curriculum around inclusive play that can be used by schools, daycare programs, even summer camps.  Why?  Because every facility out there should have a way for inclusive play to happen.  Because sometimes we need help with the “how” of it all.

In speaking with one of the presenters later, she said “I hope that one day I’ll be out of a job”.  One day, kids may not need special programs to help them buddy up with kids with disabilities in order that they may learn that there are more similarities than differences, and to not be afraid of those differences.

Okay, so I also maybe geeked out a little (a LOT) when I met the Yogibo lady (a.k.a. my new BFF Amber).

If we’ve met, I’ve probably told you about Yogibo I My children have two of the stuffed animals at our house, and the Autism Lending Library that I run has a couple.  I’d love to fill the room with their products, and yesterday I met the manager for one of their local-ish stores.  I gave her the library’s flyer (which shows our sensory room) and my card, and invited her and her team to visit the library and learn more about what we do.


Yogibo Hug (I didn’t hug Amber, but I wanted to)

We then were invited to tour the SIMS Lab (Sensory Integration/Motor Sensory).  I immediately began concocting ways that we can have something like this in our community, and thought of the Occupational Therapy Department at one of our universities.  As the boys are attending a group there once a week, you can bet your bippy I’ll be asking if they’ve considered setting up a similar facility.

One of the first things that struck me was that when kids come to the Lab, they get to select their preferred lighting.  Lighting makes a big difference for many of us with extra sensory needs, and that impressed me.  The place was full of gym mats and Yogibo beanbags, a zip line that leads to a suspended ball pit (!!) and all manner of things to climb, things to toss, things to land onto.  I mean, come ON.  How cool is that? Being able to access a place like this and get all the sensory input one needs in order to be able to better self-regulate is so important, and this Lab is providing that for kids.

I also met a woman who is working on the changes to a local (and very NOT inclusive, currently) playground.  There is this presumption sometimes that the way to make things inclusive is to simply stick a ramp on things.  Um, no.  There is so much more than that.  You must consider the gamut of disabilities, and which types of equipment might provide something that may be needed by someone with those disabilities.  We talked at length about what they might provide to assist kids for whom the wide open space and the very large concept of PLAY might be disregulating.  They hadn’t thought of that, and I hope we’ll be talking more as they continue to develop their designs.

So here’s my homework for you: go to a local park with a playground.  Try to put yourself in the shoes of someone with a disability- that can be anything from being blind to being in a wheelchair, being hypersensitive to being hyposensitive, having trouble navigating even the seemingly smallest hurdle to having trouble navigating a social situation such as the playground.  Look at it through these lenses, and see what could be different.  And then work with the community to create change.

I would like to thank SUNY Cortland for offering families and professionals an opportunity to come together to learn about inclusive play, adaptive physical education, the use of technology, and music therapy programming.  

The beauty of unstructured time

For a family so used to schedules and specific things happening at very specific times, the weekends can feel a little daunting.

Oh sure, the boys go off for four hours every Saturday so that the parental units can regain an iota of sanity, so we can count on that one thing happening without fail.  This weekend, I had glorious visions of me and my true love at the Apple Festival, drinking cider and smelling apples and eating amazing things…

And then we remembered…people.  We don’t like to people.  So instead, we went shoe shopping! Wee!

Okay, sometimes it’s hard to get me to focus.  I think I have a plan, but the plan goes sideways and we come up with a new plan.
Today I had a new plan, one I wanted to at least try to stick with.  We’d take the boys grocery shopping, come back for lunch, and then go apple picking.

Keep in mind that when I say that something is “unstructured”, I mean that we don’t have the day planned out in 15-minute blocks like their school days.  We have ideas about what needs to happen, but we also know that most of those things can and will be sacrificed should everything fall apart.

You know those ideas that sound great on paper but are not so nice in the execution?  Taking two easily distracted children apple picking is every bit of that.  It sounds so idyllic, the sunshine and the cool early autumn air, the smell of apples and the sight of pumpkins and mums.  It’s all really lovely. Sounds like a scene in a movie, actually.

Until your actors forget their lines, their stunt doubles call in sick, and the person in charge of keeping everyone close at hand for their scene has disappeared.

Although the day itself was full of challenges and all of our typical planning out of each stage (yes, even on unstructured days we do this) and reminding the boys of every move we will make (which is really exhausting), I think of smaller more beautiful moments:

Wonder Boy to his brother: “Look to the west!  Look over there! There’s a barn in the west!!”
And a little later, as Wonder Boy quietly hummed “Piano Man” (one of his new favorite songs) to himself.
Or perhaps earlier in the day, when Speedy helped the cashier at the grocery store by spinning the bagging carousel whenever she prompted him ever so patiently.
Or the moment when, after seeing Speedy eat successfully without any struggles, my husband turned to me and said “Maybe I need to rethink how we handle mealtimes.”

You see, this evening, we allowed them to eat dinner while watching a movie- something educational and relatively chill in its nature.  And as Speedy’s one to one aide had observed, when he’s occupied with something like this, he eats.  He doesn’t exhibit any of the usual signs of anxiety, and he often eats the entire meal.  That was a beautiful thing to see first hand, and I was really taken aback that my husband was open to setting aside one of the few non-negotiables- family dinners happen at the table.
Sure, statistics do show the many benefits for adults and for children when mealtime is taken together and sitting around the dining room table.  My counter to that is that I would bet that upon further examination those studies did not take neurodiversity into consideration.  That the white-picket-fence families with 2.5 children (I’ve often wondered about that odd number) who are neurotypical are the ones examined.  And yes, for those families it makes a lot of sense.  But we really must appreciate the needs of the individual, and set our children up for success.  If that means alternate meal configurations, then I’m all for it and I’m really grateful to have my husband on board.

But my all-time favorite moment from the day:  When my husband broke his “grumpy old man” persona and left me absolutely guffawing.  It doesn’t happen often, because life is so busy, but my word these are the moments which keep me going.