My child has autism- Now what?

Yesterday, I told you the emotional story of how we got an autism diagnosis for Nathan.  That was just the first step in what continues to be a lifelong journey.

When Nathan was a year and a half old, he stopped
making eye contact and talking

For me, one of the hardest parts of hearing the words, "Your child has autism", was figuring out what to do next.  We already had done an early intervention (EI) evaluation, and Nathan was getting speech, special education, occupational therapy (OT) and physical therapy (PT) services.  Our developmental pediatrician who diagnosed Nathan also recommended seeing a neurologist.  It is estimated that as many as one third of people with autism also have epilepsy, we needed to rule out seizures.  Other than that, the doctor said to continue with EI, and come back in a year.

Nathan has always loved reading, he taught himself
to read before he turned 2, his therapists used books as a reward

I made an appointment with a pediatric neurologist, who diagnosed Nathan with hypotonia, or floppy baby syndrome.  This means, Nathan has low muscle tone, and it also explained why he had so much trouble sitting up, crawling and walking.  The neurologist also ordered an electroencephalogram (EEG) to test for seizures.  It came back abnormal, but didn't show any actual seizure activity.  The neurologist gave us a list of symptoms to look for and said to come back if we noticed any seizures, if not, he would see us in 6 months.

Now what???  I started to read everything I could about autism- books, articles, websites, online forums, I mean EVERYTHING!  Many parents were talking about gluten free and casein free (gfcf) diets, saying they had seen improvements in eye contact and speech.  We decided to give it a try, since it wouldn't hurt him, and if we didn't see any change, we could just go back on his regular diet.

I was hearing a lot of great things about gluten free-casein free
diets, we decided to give a try

It takes 2 weeks to get casein out of the body, and 6 weeks to get gluten out.  We started with casein- removing all milk, cheese, yogurt and other milk based products out of his diet.  We didn't see much of an improvement after two weeks.  Then we removed gluten from his diet.  The first few weeks were awful.  He was so sick, vomiting, diarrhea, he was angry all the time and slept a lot.  Then at about the six week mark, something amazing happened, Nathan started talking again- he didn't talk as much as he had before his regression, but he was talking!!!  He also started making eye contact- it was quick and fleeting- but he would look at you, and react if you talked to him!  Nathan's therapists were in shock. They had never seen anything like it.  I know gfcf diets don't work for everyone, but it brought back some of the child we had once known.  (FYI, after a couple of years, we put Nathan back on casein, but, he still refuses to drink milk or eat yogurt, but he likes grilled cheese and cheese on pizza and on rare occasions he will have ice cream.  Eight years later, he still doesn't eat gluten.  Nathan was later diagnosed with celiac disease- my mother and I also have it.  He will never eat gluten again!)

Nathan started going to preschool 2 mornings a week
when he was 2-years-old

I also started to read about Applied Behavioral Analysis (ABA) therapy.  There are lot of really scientific explanations of what this is, but basically, it's an intensive form of therapy where the therapist teaches the child what to do and how to behave in certain situations, and provides rewards for positive behaviors.  The therapist also keeps track of the child's progress on a chart.  For example, to increase eye contact, the therapist will not respond to the child unless he makes eye contact with her.  Then when he does make eye contact, he will get a reward and she will respond. A reward can be a favorite toy or a snack.  She then tracks on the chart how quickly and/or how often he makes eye contact when he wants something.

After reading about this therapy and studies showing positive results, I went back to the county and demanded ABA therapy for our son.  I provided them with a letter from Nathan's neurologist saying he needed it and it was approved.  Just between you and me, I kind of hated ABA.  I couldn't watch it, it made me sick to my stomach.  It felt like Nathan was a dog and his therapist was his trainer.  Was he really learning how to make eye contact, communicate, and play?  Or was he just doing what he thought he needed to do to get a reward?  But, Nathan loved it, he would see his therapist coming down the driveway and go sit at the therapy table in his room and wait to "play" with her.  After a while, I started to see the benefits of ABA.  His eye contact improved significantly and he would ask for things he wanted or needed.  He was really communicating again.

Some therapies were fun for Nathan, especially swimming for OT
and going to the playground for PT

By two and a half-years-old, Nathan got 2 hours of ABA therapy per day, five days a week.  Between ABA, special education, speech, PT and OT, Nathan was getting more than 20 hours of services a week in our home.  He was also going to an integrated preschool 2 mornings a week.  Our lives revolved around Nathan's services, driving him to and from school and he still needed a good nap everyday (poor baby Drew, never got a nap, someone was always coming or going!).  

So, what do you do after you hear the words "Your child has autism"?  Read.  Educate yourself about autism and the services available- and get them for your child.  Don't ask for them, demand them. Don't take no for an answer.  Find a good developmental pediatrician and a neurologist who will back you up and also demand the services.   We hear doctors and experts say all the time, "early intervention is key". Well, take it from me, they're right. If it had not been for all those hours of early intervention services, Nathan would not be where he is today.

Six Flags Great Adventure Part 2: Gluten Free Report

As I told you yesterday, this past weekend we went to Six Flags Great Adventure in Jackson, NJ. While we had no problems with accommodations for Nathan's autism, finding gluten free food options for Nathan and me was not as easy.

Before entering the park, you'll have to go through

metal detectors

I was prepared for this, so we brought some snacks with us.  Typically, absolutely no outside food or drink is allowed at Six Flags parks, but if you have a medical excuse you're fine.  Now, a medical excuse does not mean you need to bring a note from you doctor, you just need to tell security as you enter the park.

After going through the metal detector, a security guard will search your bags,

just let them know you have dietary restrictions and need to bring your own food

Six Flags has some pretty intense security procedures. First you have to go through a metal detector, so all belts, jewelry, wallets and cell phones have to be put in a basket and screened.  Then you hand your bags to the guard and walk through the metal detector yourself.  The guard will then go through your bags, that's when you tell him or her that you have food in your bag and that you have dietary restrictions.  The guard will put a sticker on your bag so people inside the park won't bother you later in the day if they see you eating outside food.

The security guard will put a sticker on your food or on your bag

stating that you have medial approval to bring food into the park

There are very few gluten free food options for sale in the park.  The Go Fresh Cafe offers a gluten free menu, including chicken nuggets, mac and cheese, and meatloaf.  Last year we decided to give these a try. It was not good- at all. If you like frozen dinners that were microwaved way too long, then this is your place, otherwise, bring your own food!!!

Go Fresh Cafe is the only dining location with a gluten free menu,

we weren't impressed last year, it features microwaved, frozen dinners

In addition to the snacks we brought, we also bought cotton candy. I got an ice cream and Nathan got an Italian ice from Rita's.  By the time we left, Nathan and I were both tired and really hungry, I guess I should have brought more snacks! We had a great time riding the rides, and spending time together, but the lack of gluten free food make us miss Walt Disney World, where you can get just about anything gluten free!

I Scream, You Scream, We all Scream for Ice Cream!

I rarely go to the grocery store, and when I do go, I usually go alone, it's just quicker, easier and saves me money. Most of the time though, I use an online grocery delivery service. It's awesome!  It's also quicker, easier, and saves me money!

But sometimes I just need to go shopping.

This was one of those weeks. We needed bread and a few other gluten free things that aren't available online. I dragged my hubby and kids along to the store, because we were already out. Big mistake!

Look at what we came home with. If you had seen us and our shopping cart, you would have thought my family had never seen ice cream before! Jason, Nathan and Drew went crazy in the frozen section, buying 5 containers of ice cream,  2 packages of ice pops, fudge bars, Italian ices, and drumsticks!

Think we got enough ice cream?

This is why I don't take my family to the grocery store!

But wait... there's more! I never buy gluten filled treats! My oldest son, Nathan, and I can't eat them and I try to limit the amount of junk my family eats anyway. Well, Jason, my gluten loving husband, and our youngest son, Drew, went wild in the bakery as well! They bought a cake and a huge container chocolate chip cookies- they ate most of them before I could snap a picture! (They did think of Nathan, by also getting some gluten free ice cream cones to go along with all that ice cream!)

Stocking up on some gluten. Blach!

I have no idea what we'll have for dinner this week,  but I'm pretty sure I know what's for dessert!

Blogging?? Yes, I'm blogging!

Time, it's the one thing no one has enough of.  Being busy is a new status symbol.  We're always talking about how busy we are, how tired we are, how we're always trying to DO IT ALL!

Well, I'm busy too, but I've still decided to start my own blog anyway.  Go ahead, call me crazy, I won't be offended.

So, who is Becky Cook?

First and foremost, I love my family!  I am a wife and a mother to 2 amazing boys.  Our oldest son, Nathan, has autism, and he and I also have celiac disease.  Our youngest son, Andrew, keeps us busy running to sports games, practices, and whatever else he can think to get us to do!  So, at home there is always something to juggle- practices, therapies, school meetings, special diets- there is ALWAYS something!

I also work full time in television news.  Let's just say, that's something different every day!  I never know what the day will bring me, which is exciting!  Plus, commuting over an hour each way on public transit to and from work is NEVER boring!

Finally, I am a total Disnerd- as my husband calls it!  I LOVE all things Disney, especially Walt Disney World.  So, before anyone asks.  Yes, we are going back to Walt Disney World- AGAIN.  Even when we don't have a date set for our next visit, I am always planning our next trip in my mind!

So, why am I writing a blog, I want to share everything I've learned over the years.  Whether it be related to raising a child with special needs, eating gluten free, juggling a marriage, kids and a career or travel planning (mostly Disney travel planning).

Thanks for joining me for this ride, and I hope you stick around for what tomorrow might bring,...

Because always remember, no matter what challenges you face today- "There's a great big beautiful tomorrow, shining at the end of the everyday!"- The Carousel of Progress at Walt Disney World