Monday, October 3, 2016

Introducing: The Special Needs Moms Show

The Special Needs Mom Show

Okay, I'll admit it, when it comes to taking care of my family, I'm a bit of a control freak.  I am on top of everything (or try to be!).  As the mom of 2 boys, including one with autism, I am in charge of coordinating appointments, filling out paperwork, and making sure they're getting everything they need.

But I'm not so good at taking care of myself.  I am always last on my "To Do List".  Between being a full time mom and working full time, I just don't have enough time to take care of all of my needs.  Whether it's going to the salon for a haircut, working out, or even just taking a relaxing bath, it's hard to find the time!

I've come to realize though, this isn't a good life plan.  Taking care of everyone else- my kids, my husband, my co-workers- but by not taking care of myself, I'm putting my own health at risk.  So when my friend and fellow special needs mom, Kathy Kelly, asked me to join her on her new podcast, I was excited and up for the challenge.

The Special Needs Moms show is for moms who have kids with special needs.  But instead of talking about our kids and their special needs, we're talking about us and our special needs!  Together we will explore realistic ways to stay healthy.  So if you're the mother of someone with autism, sensory processing disorder, down syndrome, ADHD and/or other related conditions- this is the podcast for YOU!

Want to hear more?  Check it out on iTunes, and subscribe today and join you can join the conversation in our community on Facebook.

Tuesday, July 26, 2016

Swimming and Autism: A Life Skill and A Lifesaver

My 11-year-old son, Nathan, has always loved water.  Like many children with autism, he loves the bathtub, the shower, a swimming pool or the beach.  It doesn't matter where the water is, he loves it!  He has taken swimming lessons, since he was 5-years-old, but he never was able to learn to swim.
When Nathan was little, his therapists would
fill a kiddie pool and use a water table with him
This was a huge fear for my husband and me.  According to the National Autism Association, accidental drowning is a leading cause of death for children under the age of 14 with autism.  Between 2009-2011, 91% of deaths of children with autism were due to accidental drowning after a child wandered away.  In addition to his love of water, Nathan is also a wanderer.
Nathan loves to feel the waves crashing
into him at the beach
I knew if Nathan could get over his fear of drowning, he could easily learn to swim.  He loves the water, but was terrified to go in without a life jacket or flotation device.  He would sit on the steps and refuse to go in any further and God forbid his face should go in the water, he would panic.
Nathan would refuse to get in the water without a
life jacket, he was terrified of drowning

After trying years of regular swimming lessons in a regular class, I decided I needed to try something else.  In March of this year, I found Swim Angelfish.  They have swimming lessons and swim therapy for children with autism, physical or sensory challenges.  All lessons are 1:1 with just your child and his or her instructor.  They have locations in New York, Connecticut, Massachusetts, and New Hampshire.  Like everything else when it comes to autism, it isn't cheap- $60 per lesson- but if you buy a group of lessons in advance, you will get a discount.
At the end of Nathan's first lesson,
he doggie paddled across the pool

I've been amazed by the results.  By the end of the first lesson, Nathan was doggie paddling from one side of the pool to the other!  Now, 4 months later, he will wear his goggles- he used scream if we tried to put them on and he called them "his weakness" because he thought if he wore goggles, he would drown.  He will also go underwater- just for a fraction of a second, but this is huge!
Nathan will now wear his goggles
and go under- even if for a split second

Would I call Nathan swimmer?  No, he still has a long way to go, but at least I know he can be safe in and near water.  That is a huge relief for me and Jason.  If you've been thinking of trying 1:1 swimming lessons for your child, I highly recommend it.  It could save a life.

Tuesday, July 12, 2016

The Long and Winding Road to Medicaid

Nathan was recently approved for Medicaid by New York State.  Because he has autism, he is entitled to certain services.  The process took a long time- years actually.  Part of that is my fault, part of it is the fault of the system.  Here is our journey.
Nathan was just 5 years old and in pre-school when he was
determined to be eligible for services
Nathan was originally determined to be eligible for services in the spring of 2010.  Children under the age of 7 (Nathan was 5 at the time), are given a provisional eligibility, because some kids "grow out" of their disability.  A few months after Nathan was found eligible, we moved to a new county and I never pursued services.  He started kindergarten the month after we moved, I was working full time, and I just never felt the need.
After we moved, I gave up trying to get services until
2013, when Nathan was 8-years-old
In 2013, Nathan started having some trouble in school.  I needed help.  But Nathan was now 8 years old, and his provisional eligibility had expired.  I contacted my local OPWDD (Office for People with Developmental Disabilities) office.  In New York, this is the first step to getting services.  I was told that the first thing I had to do was attend a Front Door information session.  These classes are 2-3 hours and are held at various locations around the state.  The sessions are a pre-requisite to authorizing services.  I took this class on November 26, 2013.

After I took the class, I was able to start the eligibility process.  During this process, OPWDD reviews various reports and records to determine if the person actually has a disability.  After taking the class, I sent in all the forms and reports in January 2014, but unfortunately, the forms were returned to me as "incomplete".  Some of the school reports were too old to be acceptable.

I was frustrated.  Once again, I put it on hold.  We were in the middle of buying a home and moving.  I was overwhelmed by everything I needed to do.
When we were told we didn't have all the
documentation required, I gave up until 2013
A year later, in February 2015, I decided I needed to get the process moving again.  I reached out to the local OPWDD office again.  Because I had already attended a Front Door session, I was told to send copies of Nathan's most recent annual physical, classroom observation report from the school psychologist, teacher evaluation, social history, developmental pediatrician report, reports from his speech and occupational therapists, psychological evaluation and IEP.  I sent everything the following day.  (If you have a child with special needs, you have all these documents close at hand, at all times.)

Does this look familiar?  This is my pile
of paperwork that I keep in the corner of
my dining room, in case I need anything!
The very next day, on February 26, 2015, I was told that the BASC (Behavioral Assessment System for Children) test our school district did on Nathan was not acceptable.  Nathan's IQ was determined to be 60, people with IQ's of 60 or above require either a Vineland or ABAS (Adaptive Behavior Assessment System) test.  I reached out to our school district immediately and was told they have the Vineland test.  I emailed the school requesting the test and providing consent to do the testing on the same day.  (None of this made any sense to me. I don't know what these tests are- or why some are acceptable and others aren't.  But again, I was frustrated!)

On March 9, the school had completed its portion of the Vineland test.  There is also a portion for parents to fill out, I completed that on March 11, and two days later on March 13, the school had evaluated the test and I sent the report to OPWDD.
In July 2015, we got Nathan's disability determination letter
On July 13, 2015, I received the letter we had been waiting for!  Nathan had been determined to have a disability.  We were assigned a Medicaid service coordinator, but first we had to go through a separate eligibility process for Medicaid services.  I told our service coordinator that we were having serious behavioral issues with Nathan and I didn't know how much longer I could wait.  Because of my concerns about Nathan's behaviors, on July 17, 2015, we were refereed to a crisis program.

On July 20, 2015, our Medicaid service coordinator came to our house to fill out more paperwork and on July 22, Nathan started seeing a crisis intervention therapist once a week.  She comes to our house to help us and Nathan deal with his meltdowns.  She has been seeing him ever since and has truly helped with is behavior.  

After I filled out the paperwork for Medicaid, I didn't hear anything until October 6, when our service coordinator requested a new disability report.  I sent it to our pediatrician and he returned it the same day.
In December of 2015, we were still being
asked for more documents
On December 7, they requested an updated psychological/social evaluation from the school psychologist.  She immediately did the eval and got the report back to me.

On March 10, 2016, my husband Jason and I had to fill out updated personal information about ourselves- address, phone numbers, employers, etc.

On April 4, I received a request for updated information from Jason and me, our school and our pediatrician.  I got the documents in the mail on a Monday and the accompanying letter said if they didn't receive it back (by certified mail) by that Friday, we would may need to start the entire process over.  I flipped out.  I called our school, they said they could get it done the next day (Tuesday). I called our pediatrician, but he was out of the office until Thursday.  There was no way I could return all the documents by Friday. I called, very upset.  I was told that they could extend the deadline, but that the person working on our file would be leaving on vacation for 4 weeks on Friday, so if he didn't get it to him before he left it would end up in a pile on his desk.  I decided to take a deep breath and just send it in when I had everything back.  I ended up sending everything on Friday April 8.

July 2016, Nathan is 11-years-old and FINALLY
got his Medicaid approval (he's grown so much!)
On June 27, 2016 (nearly a year after we got Nathan's disability determination and 14 months after we started the process) I got the next letter we had been waiting for- Nathan was approved for Medicaid.  I got his Medicaid card in the mail the following day.  I also got an email from the Medicaid service coordinator I had been working with.  She is leaving and we had been assigned a new one.  So far, I have used his Medicaid card at his psychologist and for his prescription medication.  I have not heard again from the new service coordinator to set up other services.

Throughout this process, I hit a lot of road blocks and was disheartened by the entire system.  I said to my husband several times, "I think they just want people to get frustrated and give up and I'm sure a lot do." (I did!)  I was also told by people along the way- at least your child is young and isn't aging out of school services.  I didn't find that reasoning very comforting.  I'm sure there are kids who have aged out of school and are waiting for services for more than a year.

If you've been thinking of getting Medicaid and/or a disability declaration for your child, do it.  It will probably take a long time, and it's definitely an upsetting process, but hopefully it will be worth it in the long run. 

Monday, July 4, 2016

Gluten Free Dining at Dinosaur Bar-B-Que

What would the Fourth of July be without some barbecue?  One of my favorite barbecue places is Dinosaur Bar-B-Que.  I've loved this restaurant for nearly 2 decades- since I worked at a television station in Syracuse, NY- the home of the original Dinosaur Bar-B-Que.
Dinosaur Bar-B-Que in Stamford, CT is one of
10 Dinosaur Bar-B-Que locations
When I was diagnosed with celiac disease, I thought my barbecue eating days were over, so I was thrilled when I found out Dinosaur Bar-B-Que has a gluten free menu.  I was even more excited when in 2012 they opened a restaurant in Stamford, CT, 25 minutes from my home in White Plains, NY.  Last week, my family and I stopped in for dinner, after my son's swimming lesson in nearby Greenwich, CT.
Gluten free menu- appetizers and entrees
Gluten free menu- sandwiches and sides
Every table has a selection of four sauces.
They are all gluten free.
Not only do they have a gluten free menu, but all of Dinosaur Bar-B-Que's sauces are also gluten free.  Unfortunately, they don't have any gluten free rolls or corn bread.  There are a bunch of sandwiches and burgers on the menu.  So those of us who can't eat gluten, have to get a "no roll" sandwich as the menu calls them (which isn't really a sandwich at all!).  All the entrees (or Bar-B-Que Pit Plates as Dinosaur Bar-B-Que calls them) come with corn bread- and of course we can't eat that either.  I love their sides- and always have a hard time picking which two I'm going to get with my meal.  But our 11-year-old son, Nathan- who also has celiac disease- loves french fries.  Unfortunately, they do not have a dedicated fryer, so he can't have them.
We decided to sit outside
Nathan also has autism.  He can get very antsy in restaurants to help ease his anxiety, we decided to sit outside on the patio.  If the weather is nice, I highly recommend it!  Nathan didn't feel cramped and actually put down the iPad and talked to us.  We have eaten inside in the past.  It's inside an old refurbished factory, with dark woods, and plenty of televisions to watch your favorite team.
Brisket taco appetizer- and you can't have
barbecue without a sweet tea!
For an appetizer, I ordered the brisket taco.  It has chopped brisket, cheddar cheese, smoked avocado and tomato salsa, and chipotle crema on a corn tortilla.  It's mildly spicy but not hot, even my husband, Jason, who can't handle anything spicy tried it and thought it was good.  It's the perfect combination of spicy chipotle and brisket and cool avocado and crema.  It's a great small bite to start your meal.
House special with simmered greens with smoked turkey
and Harlem potato salad
For my dinner, I had the house special- a 1/4 chicken and 1/4 rack of ribs.  For my two sides this time, I decided on the simmered greens with smoked turkey and Harlem potato salad.  The chicken is always great.  Even the white meat is flavorful, slightly sweet and juicy.  Even my son, Drew, who usually doesn't care for chicken loved it- he actually stole half of my chicken!  I was actually disappointed in my ribs.  They were a little dry.  This was unusual.  I added some more barbecue sauce to the top, then they were fine.  The greens never disappoint.  They were smokey and delicious.  I always get the potato salad.  I don't find it spicy at all, but Jason doesn't like it he says it's too spicy for him- maybe it's the smoked paprika sprinkled on top.

They don't have any gluten free desserts- but by the time we were done with dinner, we were all stuffed, so we couldn't have eaten dessert anyway.

In addition to the location we visited in Stamford, CT, there are several New York locations including- Syracuse, Troy, Rochester, Brooklyn, Buffalo, and Harlem.  There are also Dinosaur Bar-B-Que restaurants in Baltimore, Chicago, and Newark, NJ.  And you can buy Dinosaur Bar-B-Que sauces at many grocery stores.

Happy Fourth of July, everyone!

Monday, June 27, 2016

Let's Support Each Other and Stop The Shaming

Lane Graves was attacked and killed by an alligator
at the Grand Floridian Resort and Spa at Walt Disney World
Most days, I love my job.  As a TV news executive producer, it's something different every day.  But some stories hit me harder than others.  I've been known to break down in tears in the newsroom because a story hits too close to home.  Recently there was a story about a two-year-old boy who was attacked and killed by an alligator at Walt Disney World.  This story made me physically sick for a number of reasons-
1. A precious baby boy is dead, and his family was left broken.
2. Walt Disney World is my happy place.  Nothing this sad should happen there.
3. When my kids were little, they played in the sand along the water at several Walt Disney World resort hotels.
4. I used to live in Florida and I know that where there's water, there are alligators.
5. The awful reaction on social media.  Nameless, faceless people behind a phone or a computer pointing fingers and laying blame- mostly at the parents.

This reaction hit me very hard, because it reminded me of all the shaming that happens among autism parents.  It seems odd.  It seems like we should all be able to support each other and build each other up.  After all, no one knows more about our daily struggles than another parent, right?  Why do we have to judge other parents?  Why do we have to question every move they make?  WHY???

Over the last 9 years as an autism parent, I've seen parents shamed and belittled for trying special diets or biomedical treatments.  I've heard parents "attacking" other parents for their support of Autism Speaks or other autism organizations.  I've seen parents shake their heads in disgust at other parents who decided to take a break completely from all therapies and treatments or who delayed getting a diagnosis.  I've seen parents get angry when someone suggests finding a "cause" or a "cure" for autism.  I've heard parents question other parents for their decision to medicate or not medicate their children.

Being a parent is hard, being a parent of a child with special needs is beyond hard.  I know I'm not perfect.  I'm always second guessing myself.  The LAST thing I need is SOMEONE else shaming me too!  But I do the best I can, and I think other parents are just trying to make the best decisions for their children and their families.

Despite all this judgement that can come with being a special needs mom, I think it's the exception rather than the rule.  There are also some truly amazing people who have come into my life because of Nathan and his autism.  From teachers, aides, therapists and doctors who I now consider friends, to other moms who have become my family (believe it or not, I've never even met many of them!).
"The Special Needs Mom Show" is a new podcast for
moms of kids with special needs.  It will debut in September 2016
One of those friends has asked me to co-host a new podcast with her.  It's called "The Special Needs Mom Show" and it will premiere in September!  While we prepare for the big debut, we are also building a Facebook community.  It's a judgement free zone for moms of kids with special needs, so we can take care of our own special needs!  Click here to join!

So, next time you're tempted to judge other parents, maybe give them the benefit of the doubt first?  They may be just like me and you.  They may be filled with self-doubt and just trudging through life and trying to make the best of every day.

Wednesday, June 22, 2016

Reward the Behavior You Want

Over the last couple of weeks, I've been sharing some valuable information I've learned about how to help my 11-year-old son with autism deal with some challenging behaviors.

First, I told you about giving effective directions, then I told you what happened when we stopped punishing bad behavior and started praising good behavior.  Now, let's take praise a step further to rewarding.  We set up a reward system for Nathan to help motivate him to get things done- like homework and getting ready for school.
This is a sample reward chart some other parents
in my class used.  It breaks down behaviors/tasks into
easy understand steps
A reward can be small or big.  He can get it right away, or save up points (or checks or stickers) for a bigger prize later.  A lot of therapists and teachers have tried reward charts with Nathan before, but he doesn't really care about most prizes, so they haven't worked well.  I set up a system where he could earn his favorite things- either the computer or video games.  Instead of just giving him the computer and video games, and taking them away if he had an outburst, he would earn minutes on the computer for doing things he has to do anyway. Some activities would be worth 5 minutes, some 10, and some 15!  We also agreed to some larger prizes that he could work towards- family movie night, a trip to the zoo, a visit to the library.
This is Nathan's reward chart.  We reward him for just
about everything he has to do during the day.
You can decide what will motivate your child.  Some kids love a grab bag or prize box filled with little toys and games.  Nathan has never been motivated by this- many teachers and even doctors offices have them, but he just doesn't care enough!  Some kids love candy, so a couple M&M's could be a good reward.

Once you decide what behaviors you want to work on, then you need to talk to your child about the chart.  Choose a calm day and place to explain the new point chart.  Start by talking to your child about the rewards he will be able to earn. Ask if he has any suggestions for other prizes.  Go through the chart and explain how many points he can earn for each behavior and how he can get some prizes immediately or save up for a bigger prize!  Be enthusiastic!  Rewards and prizes are fun!  Next practice the behavior with your child.  Model what you want him to do, then have him do it.  He even earns rewards for practicing!  Don't just practice once, practice again and again to get him used to the system and to help him earn rewards faster!

Now, you're ready to get started!  Good luck, you can do this.  It's not easy, but in the long run it will be worth it.

Tuesday, June 14, 2016

Stop Punishing, Start Praising

Last week, I told you about the 10 steps for giving effective directions when dealing with difficult behaviors in children with autism.  The key to success with those steps is ignoring bad behavior and praising good behavior.

When is the last time you punished your child?  Gave him a timeout, took away a favorite toy, or lost your patience and yelled?  This was the almost daily struggle in our house- I would ask my 11-year-old son Nathan to do something (get dressed, brush his teeth, come to dinner, go to church- basically anything!), Nathan would yell and scream no, sometimes he would hit me or curse at me.  Then I would get upset, send him to his room and take away his iPad, computer or video games.  But on the occasions when he would listen I wouldn't praise him- I was basically ignoring the good behavior.
Instead of punishing bad behavior,
give your child a high-five when he does something right!
I was doing it all wrong.  During my recent research on how to help Nathan I took a Parent Management Training class.  Believe it or not, I should have been ignoring the bad behavior and praising the good.

Here's an example of what I should be doing.  When I say, "Nathan, please come to the table, it's time for dinner," if he starts yelling at me, I should remain neutral.  Don't yell, don't threaten.  Just wait.  About a minute later again I should say, "Nathan, please come to the table.  It's time for dinner." If he continues to yell or if he curses, I do nothing.  I just gently guide him to the table.  I don't say anything.  I make sure my face is neutral.  But, if instead of arguing with me about coming to the table he actually does it, I would praise him, "Wow, Nathan!  You came to the table when I asked!  That's awesome!"
Give him a thumbs up!
Or if he does something really great,
give 2 thumbs up!
The first time I ignored the yelling, Nathan stopped in the middle, got right in my face and said, "What?" He was waiting for my reaction, he wanted it.  I can't say this worked right away or all the time, in fact his behavior got worse at first.  But as time went on, Nathan's behavior got much better.

So how do you praise your child?  (At Nathan's summer camp - Our Victory Day Camp - they call it being "caught doing something good")  Every time you see your child doing the right thing- praise him.  When you praise make sure you do the following:

  1. Deliver praise close to your child.  Like I said when I talked about the keys to giving directions, make sure you're close to your child and that you have his attention.  If you're in another room or even on the other side of the room he can't see your excitement and may not even know you're praising him.
  2. Give praise immediately.  As soon as your child follows your instruction, praise him!  Don't wait for later.
  3. Use a sincere, enthusiastic tone of voice.  You don't need to be loud, but make sure you sound excited.
  4. Use nonverbal reinforcers.  Give your child a high five, a thumbs up, a pat on the back, a wink or some other indication that you're excited.  And make sure you smile- he followed your directions, that's a big deal!
  5. Be specific.  This was the hardest one for me.  Tell your child EXACTLY what he did to make you happy.  I realized I usually say something like, "Good boy" or "Great job" or "You did it" but none of those tell him WHAT he did. And I realized, he didn't understand WHY I was excited.  So, say something like, "Wow! Thank you so much for picking up your shoes and putting them in the closet! (high five)"
Make sure you smile while you praise!
(This is Nathan's idea of smiling for a picture!)
This type of praise should happen EVERY TIME!  So I know what you're thinking, I'm going to be praising him all the time.  Yes, hopefully you will.  That's the goal!  Isn't that better than yelling or fighting all the time?  If you're consistent, it will help.

After we were consistently praising good behaviors we started targeting specific things we wanted from Nathan- getting ready for school in the morning was a big one.  Coming up next week, how we went beyond praising to rewarding to really change Nathan's behavior.