Autism and Walt Disney World

Many people ask me all of the time about taking their child with Autism to Disney World. Many parents are afraid to even try to go. This blog is meant for YOU!! If your child with Autism is anything like mine, waiting can cause SEVERE meldtowns. This is to help you along and give you some tips. Do not be afraid to go to Disney World. They are really great with our kiddos.

Now there are many other people out there with other Disabilities or Special Needs. This blog may give you some tips but not all may apply. This is not to be abused by anyone as it takes away from those who truly need it and if you do abuse it you should be ashamed of yourself! A perfect example is someone I know who I no longer speak to. She can go dancing and out to clubs all year round but when in Disney she throws on a Ace bandage and complains she can't walk or stand for too long. That, to me, is abusing the system. She tries to get on the rides a bit quicker when in reality she CAN wait. Makes me so angry!!  Now I am not one to judge anyone else as I know there are hidden disabilities but for this one person I know if full of it!

*The following is our experience with our son with Autism and Apraxia at Disney World. Your experience may differ from ours but this is how it has worked for us the many times we have gone to Disney World from 2009-2013.*
 

You will find many links on this page. Please click on them as they are all very helpful.

I also enjoy this website - It has a lot of up to date information.

http://dizfanatic.com/

Some of the other sites I like to check out are:
http://www.mousesavers.com/

http://allears.net/index.html

http://www.passporterboards.com/home-of-disney-world-cruise-travel-tips-planning-articles-photos.html

I LOVE Disney World!! I try to go at least once maybe twice a year if possible.

Our picture from O'hana's.

Sam was more interested in eating his chips..

 

People always ask me why I love it there….Really?!  Well my first and most important reason is because Sam LOVEs it there!! Sam has Autism and Apraxia and is nonverbal. Sam has never had anything come easy to him. He struggles every day of his life. People are always judging him, staring at him and talking about him like he can’t hear. I fight very hard to shield him of this and raise Autism Awareness. But when we are at Disney Word Sam gets treated like a king!! It is the one place where Sam has it a little easier. Nobody judges him there and the Cast Members (Disney Employees) always go out of their way to make Sam happy. When we first get to Disney World and hop on the Disney bus Sam’s face lights up and he gets the hugest smile on his face. Wouldn’t any parent love that?? Behind that face is my other 4 boys smiling faces!!

 

People are always asking me questions about Disney World so I figured I would write a blog about some of my tips.

**I must say now that everyone tours the parks different! You know your family and it may be totally different than the way we are. I hope you can takes bits and pieces of what I say and use it to help you.**

The Guest Assistance Card – how to get it and how it helps.

 

*The following is our experience with using the GAC card with our son with Autism. Your experience may differ from ours but this is how it has worked for us the many times we have gone to Disney World from 2009-2013. For our son waiting for anything can cause a severe meltdown! Those of you who know Autism know what I mean. This is meant for you!! There are many disabilities and special needs out there but I only have experience with Autism at WDW. 

If you or a loved one as any type of Disability or Special needs you can get a Guest Assistance Card (GAC).  You can get them at any of the four parks. All you need to do is go to the Guest Relations office which is always located near the entrance.  You need to have the person that has the disability with you when you go. You need to tell the Cast Member what it is you need assistance with. For Sam we always say that he has Autism and can’t wait in lines for very long and he also has a very hard time in crowds. We also have Hagrid, my sons Autism Service Dog so we ask that they be kept together whenever possible.  Back before we had Hagrid we used Sam’s stroller as his “safe place”. You can request from them to use your stroller as a wheelchair. They will give you a red sticker with a picture of a wheelchair to put on the handle of your stroller. This helped us a ton! We used to be able to keep Sam in it right up until the ride if he was having a hard time and we knew he wouldn’t make the walk. It also was very helpful during shows. They would let him stay in it and one of us could stay next to him. If it was crowded they would make the rest of us sit a few rows back but if it wasn’t crowded then we could all sit together.  So for Sam’s card it would have the stroller and a wheelchair stamp and use alternate entrance stamped on it. They will ask you how long you are staying for and mark it on the card. They will also ask how many are in your party and they will write that on their too. They will not ask for a doctor’s note or any proof of the disability.

Without the GAC card we could NEVER go to Disney World. How does it help us besides the wheelchair use? Well whenever you get to a ride that the holder of the card is going on you show the Cast Member the card. Most of the time they will send you in the Fast Pass lane or send you in the handicapped entrance if there is one.If your child has a very hard time waiting due to Autism your wait time can be  MUCH shorter than waiting in the regular line in most cases. Please note the GAC card is not a cut the line pass and should only be used by those who truly need it. I should also add that if you are in a wheelchair or scooter and cannot transfer out of it then your wait time may be longer. Certain rides only have 1 or 2 wheelchair accessible vehicles. I will use Its A Small World as an example. They only had one boat running that was accessible for a wheelchair. So if you couldn't transfer into the boat and needed the wheelchair accessible boat you would have to wait for that boat to return to the loading dock. If there are others already waiting to get on that boat then you would have to wait for them to finish riding first.

Should you feel guilty for using it?? HECK NO!!! If you or your loved one doesn’t have the capability of waiting in a line without having a meltdown this is the only way you and your family can enjoy the parks. I know for me I feel like Sam struggles so much in his everyday life that this is HIS time to be happy and the GAC enables him to do that. There are sometimes people who give us “the look” I call it when we are passing by. One time I stopped and told a Mom that we could gladly trade places and I will stand in line with all my typical kids for an hour and her child can have Autism and get on a bit quicker – I wouldn’t mind that deal at all. Plus I am doing these people a favor because I am pretty sure they wouldn’t want to be in any line with Sam while he is having a meltdown!!  Some of the Disney Cast Members at certain rides I noticed our last trip may still try to get you to wait in the regular line if the wait for it is under 20 minutes. If you think your child can wait then fine but if not then speak up. Sam really wanted to ride Aladdin’s Carpet ride last November but he was in a terrible terrible mood.  We were trying to walk right past it but he starting crying and pulling us towards the ride. The Cast Member told me we had to wait in the line and it was only 20 minutes. I told her he really wants to ride it but at this time there is no way he can wait 20 minutes. She then told us to go through the Exit and we could get on next. So don’t be afraid to ask, just don’t be rude about it.

****The GAC card is only to be used if the person name that is on the card is GOING on that ride.**

Speaking of Rides – We always try to have a plan of how we want to tour the parks. We see some people wandering around aimlessly and I prefer not to be one of them!! I also like to research the rides before going if we haven’t been on it before. ** TIP** Sometimes if you have special needs child/Adult or someone who is afraid of rides you can watch many of them on You Tube. I often do this with Sam so he will get excited about riding a ride. It will also give you an idea if you think your family would enjoy the ride.  You can also usually preorder maps before your trip so you can get an idea of where you want to start.

Fastpasses - We do use Fastpasses for the rides Sam doesn't go on. The GAC card is only supposed to be used when the person whose name is on the card is actually going on the ride. I know some people feel that the person should not have to wait for their family for an hour if they dont want to ride. I am not one of those people. I will take Sam off somewhere else or on rides he likes while my older boys ride a bigger ride. Here is some info on Fastpass - https://disneyworld.disney.go.com/guest-services/fast-pass/

Disney is also trying something new called Fastpass+. You can reserve a rides in advance before leaving for your trip. Here is some more info on that http://micechat.com/17855-walt-disney-world-fastpass-plus/  I have yet to try the Fastpass plus as it wasn't an option the last time we went.
 

The GAC card is also good for shows. If you show them the card many times they will let you sit in the handicapped section. For fireworks we have never used it. I heard there is a tiny area that you can use it but they only allow you and one other person and you need to be there really early to get to it, which for us defeats the purpose.

A tip about the stroller as a wheelchair – even if you thing you won’t use it as one go ahead and get the sticker anyway. You may change your mind after a long day or if little Jimmy is having a meltdown and is refusing to walk.*TIP* It is also very helpful if you go to Disney Quest in Downtown Disney. They do not let strollers inside at all but if you have the sticker they will allow you to bring it in.

Example of GAC card.
 This in not my picture.
I found it on google images.

Example of sticker
for your stroller. Not my picture.

GAC card and character meet and greets –

At most character spots the GAC card will not help. It doesn’t hurt to ask though. Some do have Fastpass. Some places like the Character spot in Epcot the GAC DOES work and you can get to them a little faster. The characters can be a stressful time for us. It has happened to us many times where we try to wait in line to meet them and my husband will sit off to the side with Sam until it is our turn. It will get close to our turn then we find out the Character will be taking a 10 minutes break. If I think Sam can wait then we will or most times we will get off line. I try to set up a few character meals. I love doing it this way so we don’t have to wait in line to see them. Of course there are only certain characters at the meals so if you are looking for a specific character then you may have to wait in the park to meet them.

Here is a great site where you can look up where the Characters are. You can view all of the parks and restaurants just click on the little icon pictures.

 http://kennythepirate.com/disney-world-character-schedules/disney-world-magic-kingdom-character-schedule-list/

Sam LOVED meeting Sully and Mike!

 

Where to stay??

Ok so here is where my style may differ from yours. For us we like to stay onsite in one of the Disney Resorts. We have stayed in many different ones on different levels but our favorite is the Wilderness Lodge. For us hopping on the boat and being in Magic Kingdom in 5 minutes is priceless!! For the other parks we hop on the Disney bus. They run early and late and we have never had an issue getting anywhere. If we drive to Disney we usually pull in and don’t touch our car until we pull out to head home. If we fly we get to use the Magical Express. This is offered to all guests staying onsite. They will take your luggage right from the airport to your room, no need to wait at the baggage claim. If you need anything out of your bag right away or if it is later this may not be a good option for you – if that is the case just don’t put the special tag they send you on your bag and you will have to pick it up at baggage claim. Then you hop on the Disney’s Magical Express bus and off you go to your resort.  They will also pick you up and bring you back to the airport too.
If you stay on site you also have access to Disney's Extra Magic hours. That is on certain days a certain park will open early or stay open late only to those who are staying on site. Cast Members will ask to see your room key as proof that you are staying onsite.

 You can research which resort would work for you if you want to stay onsite. Besides the Disney site this is a great site http://land.allears.net/reviewpost/index.php?cat=1

The above link also has some offsite places to stay.  I have never stayed offsite so I can’t comment really about any of those places.

When to go? 
  
I  get asked this question a lot. I always say anytime you can go is good!! But there are times that are less crowded than others. Also there are a few weeks that I would stay away from at all costs!!
The summer time can be crowded and hot. We have gone in July and August and we prefer August. The last 2 weeks seem to be less crowded than the first two. When to avoid? Thanksgiving week, Christmas through New Years, Sping Break and most Holidays. The last 2 weeks in December I heard are very crowded too.  We have gone in May,July, August, October, November and December. I love going either the first 2 weeks in November or December but the temps may be a bit cooler and the parks may close a bit earlier.
This website has a great crowd calendar. You need to pay to subscribe to view it. Your subscription lasts a year.  I do it because I find their Crowd Calendars to be right on.
http://touringplans.com/

Again I will say - go when you can! If you have the option of choosing a time then I would research it more but I know very well sometimes you don't have a choice.

 

Garden Grocer - We use Garden Grocer to deliver groceries to us in our room. (Snacks, Bottle Water etc) You dont need to be there to get them. They will leave them with the front desk. The resort will make sure the forzen stuff stays frozen and the cold stuff stays cold! When you get back to your room just call the front desk and they will have them delivered to your room.  We usually start our order a few weeks in advance. You can save it and add to it or remove things. I usually finalize it 2 weeks before I want them delivered. Delivery dates can fill up. https://www.gardengrocer.com/?gclid=CNmFmu2gjrYCFVKf4AodtXMArg

Advance Dining Reservations

We like to get up early well we don’t really have a choice as Sam wakes up around 4 am anyway. For me there is nothing like walking down Main Street before anyone else is in there. How do we do that? Well I like to plan many of our sit down meals in advance. We always have the dining plan and usually go when they are offering it for FREE!! Many Disney table restaurants you can make an Advance Reservation (ADR) 180 days before your check in date. If you are staying in a Disney Resort they will let you book 180 days and the following 10 days after as long as you have your resort confirmation number. You can book these through the Disney website, by calling them or if you use a travel agent they can do it for you. I always use this website to figure out my call day on the 180 day mark. http://pscalculator.net/pscalc.php I always say with a little bit of planning you could be eating steaks instead of burgers and fries.

So if Magic Kingdom opens at 9 the table restaurants will start at 8. We take the first ADR we can get which is usually 8am. Since the park isn’t open to the public yet you will need to go to the entrance for “Early ADR’s”. It is always a good idea to have your ADR confirmation number on you. There have been times where our name wasn’t on their list at the gate but our number was. I am telling you walking up Main Street alone is awesome!! We also get some of our best pictures at this time because there is nobody in the way!! The PhotoPass photographers are all out at this time too and there aren’t any lines so you won’t feel rushed at all. I highly recommend doing this if you can get up and out early. Then at 9 when the park opens we are already in. I also refer to Magic Kingdom the most because that is Sam’s favorite park but we usually go early to all of them. I recommend Tusker House in Animal Kingdom for an early breakfast too.

We like to plan out several of our meals. I am not a fan of Quick Service dining. It is good sometimes but I hate hunting for a table for my large family and Service Dog. I like to know we will get an air conditioned break and be able to sit and recharge for a bit. It’s good for Sam, Hagrid, me and everyone involved. This is a great site to check out for reviews and to look over the menus of various Disney restaurants.  http://land.allears.net/reviewpost/showcat.php?cat=32 

I am working on my SamsVoice.org site and plan on adding a section about Disney food. Keep on the lookout for it!

Steak from Tony's Town Square

 

Tomorrowland Dessert party -
 https://disneyworld.disney.go.com/dining/magic-kingdom/tomorrowland-terrace-fireworks-dessert-party/

 

                                     Make sure you tell them about any food allergies.  

PhotoPass

Ok so I mentioned PhotoPass before. Do you all know what that is?? Well they have PhotoPass photographers all around the Disney Parks even the water parks. They also have them at most character spots. You can’t miss them as they are dressed in white outfits with their cameras ready to work.  They will take your picture for you. Yes they can be expensive but that is why I preorder the PhotoPass CD.  They have two offers when we when we order last time. You could pre order the PhotoPass CD for    This is a great page to learn more about PhotoPass - http://www.wdwinfo.com/wdwinfo/photopass.htm  This is what we used to pre order – “Pre-order Disney's Photo CD (http://www.disneyphotopass.com/previsitoffer.aspx)  - Cost is $119.95 (Up to $169.95 if purchased after your vacation.) This offer is for all photos taken AFTER purchase (Photos taken BEFORE purchase WILL NOT be included.) The price does not include taxes and any shipping and handling fees.”   You need to order this a few weeks before your vacation. Once they came out with the Photo Pass + we started getting that. You can order that here - http://www.disneyphotopass.com/specialoffers/wdwppp.htm  “Pre-order Disney PhotoPass+ - For $149 (normally $199.95), you will receive a voucher to exchange for your PhotoPass+ card once you get to Walt Disney World, a Photo Gallery CD with 400 stock photos, a code to create and order a PhotoCD online, print packages at select Dining locations, digital photos from select Attractions.”

We love to pre order the PhotoPass + because it also includes many rides and restaurant pictures. We used to buy the regular CD then still buy our rides pictures at Tower of Terror, Space Ranger Spin etc….and at certain restaurants. I like this one much better!! I usually order it a month in advance. They will send you a voucher in the mail. DO NOT LOSE THIS!! I keep it will all of my important vacation papers. When you get to a park you can ask where to redeem it. They will give you a plastic card that you will hand to all of the photographers to have your picture taken.  **** TIP**** Take a good picture of the back of the card where the number is. This way in case you lose your card you will still have the number. The number is how you retrieve all of your photos on the PhotoPass website.

One of our Photopass pictures. Also an example of some of
the things you can add to your pictures on the PhotoPass
website.

Stop at every photographer you wish and have them take pictures. It’s also nice when you preorder because taking a picture with a child with Autism can be quite the task!! Since we prepaid they will snap away often getting the perfect shot in the end.  Once your vacation is over you can log onto the Disney Photo Pass site and enter your card number. It will pull up all of your pictures that they took. You can add cool Disney borders and other cute things they have on their. You will have 30 days from when you log on to finalize your pictures and have them sent to you on CD. You have the release to them so you can then take them anywhere to get printed.

Example of what the PhotoPass photographers wear.
Picture is from a great site called http://www.stitchkingdom.com/

 

Getting Lost in the parks

Nobody plans on losing their child anytime anywhere but sometimes it does happen. It is better to have a plan just in case this does. This could vary depending on your child. For my older kids (17 & 15) it isn’t that much of an issue anymore as they have their own cell phones, they know our numbers and are old enough to maneuver through the parks alone if needed. First thing we do is designated a meeting place just in case we do get separated. For our younger kids (8-12) we tell them our meeting place but tell them to go to the nearest Cast Member and tell them they are lost and where we are supposed to meet up. Now my boys this age do know our phone number but you never know if they will panic so I also have ID’s made for them that they wear with their name and our cell phones number. Now for Sam, my boy with Autism this is an entirely different situation.  Sam is nonverbal and refuses to wear ID. Before we had Hagrid we were so very nervous about him running off from us and not being able to tell anyone who he is or that he has Autism. We had special shirts made up for him. I went to the Disney store and ordered several Disney T-shirts. Then I took them to our local screen printing shop in town. I had them put an Autism Puzzle piece on the back and our info. It said that his name is Sam and he is nonverbal if you see him alone please call our number. There are a ton of IDs out there for kids it just depends on what you think your child would keep on.

Example of the back of the shirts we had made.

 

Are you Celebrating anything special in Disney?

If you are make sure to tell them when you book your trip and also when you make your ADR's. some places will give you a Birthday cupcake.
There are also other things you can do. When we celebrated my son's 7th Birthday I had ordered him a special cake through the cake hotline. 407-827-2253
You can order a generic cake or ask them to make you something special. I had this cake made because it is my sons favorite ride. I had it delivered to our dinner reservation at Liberty Tree Tavern.

Josh's Birthday Cake

There are also places you can order things from and they will be delivered to your room. I have used
http://www.disneyflorist.com/ and http://www.memoriesbybetsy.com/mbb/index.php. Both were great!

Touring the parks with a Service Dog

Our last trip with our sons Service dog was by far our best trip EVER!! Disney really does an amazing job making us feel welcomed with Hagrid.



When you go into the park I recommend getting a Park Map for guest with Disabilities. On this map you will be able to see where the dog relief areas are. I would look for them before you need to use them. We never had an issue finding one but sometimes we needed help from a Cast Member. I was told they used to be “Backstage” so a CM used to have to take you to the area but that isn’t the case anymore which surprised me because most of the spots are out in the open. They can be hard to find though. They are VERY small and sometimes there is a little sign and sometimes the signs are missing. At first the size bothered me but when I thought about it Hagrid is trained to go on command anywhere I tell him too. He doesn’t need a big grassy area so I guess the size really wasn’t an issue. But I hated having to hear “Eww look at that do going pee over there.” There was also one relief spot in MK that was right next to a little shopping kart. This poor guy is trying to sell pins while my dog is 6 inches away doing his business. I suggested that maybe they put up a little fence or something just so other people don’t watch. But we never really had any issues finding or using them.

Here is one of the relief spots in Hollywood Studios.

There are many rides that they will allow the Service Dog on. Our son and dog are tethered together. We found it best to untether them before getting on the ride. It made life easier when it was time to get off of the ride. The first time we rode Haunted Mansion while they were tethered. It was quite the sight watching me getting Hagrid to turn around in the doom buggy – having me get off then Hagrid pulling Sam off. Lol.

There are some rides that your Service Dog isn’t allowed to ride on. This is from the Disney site

Attractions Not Allowing Service Animals

Due to the nature of the experience, service animals are not permitted on certain attractions. These include:

Magic Kingdom Park

Splash Mountain

Big Thunder Mountain

Peter Pan’s Flight

Space Mountain

Epcot

Mission: SPACE

Test Track

Soarin’

Sum of All Thrills

Disney’s Hollywood Studios

Rock ’n’ Roller Coaster Starring Aerosmith

The Twilight Zone Tower of Terror

Star Tours – The Adventure Continues

Disney’s Animal Kingdom Park

Affection Section at Rafiki’s Planet Watch

Kali River Rapids

Expedition Everest

Primeval Whirl

DINOSAUR - Legend of the Forbidden Mountain®

A member of the party must remain with the animal at all times.

Here is more info from the Disney Website – unless if they changed it since we last went which they may have the relief info on the Disney site was wrong. Always check when you first arrive what the rules are.

https://disneyworld.disney.go.com/guest-services/service-animals/

Things to keep in mind when touring the parks with your Service Dog:

The Heat!! If the ground is hot make sure your dog doesn’t burn his paws and give them plenty of water!

I also carry a little bag of dog food with me just in case we don’t get back to the room in time for his meal. I always also carry my own collapsible bowls to carry in the park and to use in the room.

Make sure you pick up after your dog and carry extra baggies on you just in case.

Pay attention to your dog. We found that when Sam was becoming tired, so was Hagrid. It’s bad trying to drag out your special needs child when they have had enough but it is even more challenging to do it with a 70 pound tired dog in tow!

During Parades claim your spot and make a barrier around your dog. People get nutty at parade time and some will do anything to inch in front of you. Most people aren’t expecting a dog to be laying there and will step on them. We tried to stand around Hagrid to avoid this from happening.

Be prepared for everyone to ask to pet your dog. It’s hard to say No to kids but here if you let one there will be hundreds by you. We learned very quickly to say No quickly because he is working.

Sam and Hagrid

Sometimes when it was really hot and we were taking a break by the pool at the resort we would give Hagrid a break too. Instead of making him sit in the heat and watch Sam in the pool that he isn’t allowed to go in we would let him stay in the room to cool off and rest. If for any reason you ever leave your dog in the room put up the Do Not Disturb sign on your door. The last thing you want if for a Mousekeeper to walk into your room to clean it or for whatever reason and be startled by a dog.

 

 

 

If you have any questions please ask!

Most of all ENJOY YOUR TRIP!!

Dont forget all of the yummy Disney snacks they have!!

The Kitchen Sink at Beaches N Cream
http://disneyparks.disney.go.com/blog/kitchen-sink-dessert-recipe-at-beaches-and-cream-at-disney%E2%80%99s-beach-club-resort/

 

Oh what a day!!

So today I knew I was pushing Sam to do too much. I really had no choice. I am surprised he held it together as long as he did but when he popped Oh man did he ever! The morning started out ok. He woke up at 4am played for a bit. I kept telling him he wasn’t going to school today and he seemed ok with that. He had his yearly neurologist appointment in the early afternoon. The Hospital he had to go to is about 45 minutes away from our house. I will be the first to admit it that I am a TERRIBLE driver!!! Especially when I am not sure where I am going. I have a GPS….Actually I have 3!! I use my IPhone, my car has one and I have a portable one. The 3 of them never say the same way to go. Like ever!! I trust my IPhone the most. My car and my protable have told me to make left hand turns across major highways or turn down streets that aren’t there. The plan was to have my hubby drive. My other son Josh was also complaining that his ear hurt so I made a doctors appointment for him for 4. We figured one of us would stay home with Sam while the other took Josh. As we were getting ready to leave my hubby called my father-in-law to see how he was doing. Turns out he had the same problem as last time he had the cardiac catheterization done. He had internal bleeding in his leg. He had called 911 and was in the Ambulance when my hubby called. Of course he went down to the hospital which is about an hour away from us.  So I took Sam to his appointment. Sam hates going to the doctors. HATES it. He is terrified for some reason. He freaks out and cries and I feel terrible. Once the neurologist came in he started to play with Sam. Sam calmed down and he told me how much progress Sam has made. He was also very intrigued with Hagrid and never heard of an Autism Service Dog before. It was a good appointment.

On the way home I knew it would be easier on Sam if we went to get Josh and take him to the doctor early so that’s what I did. I took Josh out of school a bit early and his doctor let me come in early. Sam got a little upset there but we kept reassuring him we weren’t there for him. Turns out josh has an ear infection so on to the pharmacy we go.

I knew this was going to put Sam over his limit. I knew it had all the making of a disaster!  I really had no choice though because I needed to get Josh’s prescription filled. We go to a Mom & Pop type pharmacy. They all know all of us there and I like that but the store is small and has a lot of breakable crap.  We went to the back to drop off the prescription and they said it would only be 5 minutes. When it was time to go pay that’s when all hell broke loose!  Sam started having a meltdown. I knew I was in trouble…Even Hagrid knew. Hagrid was looking at me like “Whoa lady! I can’t handle this!”  Sam was trying to run down one of the aisles but he couldn’t because he was tethered. Hagrid was in his “Stay” position and man was Sam PISSED!! He yanked and yanked. I tried pulling him back to us by the tether and he was pulling the other way. I grabbed his arm and pull him towards me. At this point I am a hot mess!!! My purse and Sam’s Dynavox are falling off my one shoulder (most annoy feeling in the world is to have straps falling off your shoulder), and my other arm I am trying to hold him close to me so he doesn’t break anything. The pharmacist was waiting for me to sign my receipt during all of this and the entire store was at a standstill. Everyone was watching us and I knew it. I could really care less that they were. The pharmacist told me to take my time and I felt like yelling “Take my time?! I need to get the F&&K out of here like now!!”. I signed my receipt and asked Josh to take the bag for me. I am trying to quickly decide which aisle is the widest to make my exit…. This entire time Sam is still in full meltdown mode. I pick my aisle and am walking as fast as I can. Oh man did I pick the wrong aisle!! Two of Sam’s favorite things in the world Crayons and Play Doh!! I quickly dragged him past them because he is so far gone that he wouldn’t have been happy even if I brought every one they had. I am fumbling through the store when FINALLY some man offers me some help! THANK YOU GOD!!! He cleared the way for me and opened up both doors so we could get out. I thanked him a million times for helping me as the other 20 people in there just stared and did nothing.  So the saga continued outside. Josh and Hagrid both got in the car and Sam wouldn’t get in. He kept trying to close the door on me and hitting me. Finally I got him in his seat and he did the arch your back move. I had to use all my force to get him in and buckle him. Thank the lord for my 5 point harness child seat for big boys. Once he is in he can’t get himself out. So he is still having a meltdown. My good friend Anne calls at that moment. She always seemed to know when to call. She asked how my day was. LOL She then quickly heard Sam freaking out. He cried all the way home. Once we got home he put on his PJ’s and was exhausted. So was I!! I feel terrible when he gets like that. It doesn’t happen often these days but it does happen.

I feel like people who know us and know how GREAT Hagrid has been maybe think that Sam is more like a typical kid. That is far from the truth.  Sam still struggles daily with things. Now before Hagrid came along meltdowns like today used to happen many times in one day. Now they happen rarely. Thank god.  But people always seemed so surprised when they do happen. Sam still has Autism. Sam gets overstimulated and has meltdowns. He doesn’t sit and watch TV. He doesn’t stand still and let me have a conversation with someone while we are out. He doesn’t play with others like a typical kid would. He will destroy your house. But he will make eye contact with you. He will try to talk to you in his own way. He will try to play with you in his own way. He will love you. He will melt your heart. He will try to make you understand his world.  I am so thankful for the progress Sam has made over the past few months. He has come such a far way.  He is my world. Everything I do is for him. But I hate days like today!! Now he is sleeping and tomorrow is a new day!

My father-in-law is still in the hospital but seems to be doing well. The bleeding has stopped. They told him he needs to stay in bed until tomorrow and then they will have him move around and hope everything is ok.

Celebrate the Small things!!

Many parents with typical kids take small things for granted every day. I used to be one of those parents too until Sam came along. I remember when my thinking changed. Sam was about 2 years old and we had started our search for schools for him. He was in Early Intervention and would age out at the age of 3. We knew we didn’t think our towns program was a good fit for him so we started our search across NJ to find a school for Sam. We were at a school that we really liked and they had brought us into their gym. There was a boy on a swing – he was 14 years old. They said his favorite thing to do was to swing on the swing. But he couldn’t do it himself. He needed to be pushed. He couldn’t understand how to make it swing by himself. That was when it hit me in the face, and it stung! All I kept thinking was here I am looking at this teenage boy and there was pure joy on his face when he was pushed on the swing. How they tried getting him to move his legs and such to do it himself but he wouldn’t, he couldn't! He just sat there upset. I felt terrible. Most typical parents put their kids on a swing and it’s no issue – they can just do it or they learn quickly to do it……But not parents like us. Most things are much harder for our kids.

Ever since that day I realized that every single step Sam takes is HUGE for him & us. I celebrate them all! Well I am going to share with you a step he took today! When we are going to be leaving the house to go somewhere I have a routine with Sam. I usually tell him about 15 minutes in advance that we are going in the car soon to go to wherever. If I have a picture of it I will show him where we are going. I then take him to the bathroom, get his socks out of his drawer, then I go to the closet and take out his shoes. I will tell him to sit on the couch and I put on his stuff. Well today I told him we were leaving soon to go to therapy and he ran out of the room. I heard some banging and saw him go running past the kitchen doorway. He plopped himself down on the couch. I walked over and saw what he did. He ran and got his own socks out the drawer and his sneakers from the closet and was trying to put them on himself. I never told him to go get them he did that all on his own. I was so proud of him!!!

I also wanted to say this – I know it wasn’t meant in a bad way but felt the need to address it so here I go. The other day I posted about a great moment when Sam and I had our first conversation. I had gotten several private messages from people saying they were sorry. Sorry Sam is like that and I have to deal with that. Please DON’T be sorry!! I am not sorry!! Autism doesn’t define Sam. I thank God every day for him – Autism or not he is a loving, caring, wonderful little boy and has much to offer the world. He has made me and so many others better people. He has taught me a new way of seeing the world. I appreciate so many more things now than I used to…and I take time to stop and smell the roses! I love Sam the way he IS!!

The colder weather is throwing Sam off

Sam understands many things but when the weather changes he gets thrown off.

When Sam goes to bed or just hanging at home he likes to wear plain white T-shirts and sweatpants. When we are going out or if he has school then he puts on real clothes. This morning Sam woke up on the early side (as usual) about 5 am. It was a chilly morning here. Sam was cold and shivering so I went into his closet and pulled him out a sweatshirt to throw on. He was sitting on the couch watching Cars and I told him I am putting on his sweatshirt so he will be warm. Well as soon as I put it on he thought we were going somewhere. He immediately pulled his sweats off – ran and got a pair of jean, socks & his sneakers. I kept telling him we weren’t going anywhere and he didn’t have school but he didn’t understand it. There he was at 5:15am all ready to go waiting by the front door. I told him we would take Hagrid outside, so we went out into the yard for a few minutes. When we came back in he still wanted to go out. If my hubby was home I would have taken him for a ride but my hubby is away and I wouldn’t leave the house with my other boys home.  Sam looked so uncomfortable all morning hanging out with his jeans and sneakers on while the rest of us were all hanging in our sweats.

I went through Sam’s closet and pulled out all his plain sweatshirts and long sleeve T-shirts. I moved them into his PJ drawer with his sweats and white T-shirts. I am hoping I can get him to understand that these shirts aren’t going out shirts lol they are hanging  home shirts.

My Picky Lil eater

So yesterday I posted a picture on Facebook that I thought was funny. I asked Sam what he wanted for breakfast and he went to the cabinet and pulled out 10 boxes of cereal, some crackers and some other stuff. Now many of you know the struggle it has been for us to get Sam to eat anything at all but for those of you who don’t here is some of the story.

Sam picking out his breakfast...He wound up eating none of it.
He ate some Lays Chips instead.

 

Forgive me if this jumps all over the place – I have been sick since last Friday and my head aint working right.

Also I know many people have their kids on the GF/CF diets, which I think is great if you feel that works for your child. Every child is different and Sam has always been very picky and we never wanted to limited his food at this time – if he ate anything we put in front of him then I would have considered those diets but for now not an option for us.

 

Sam was ALWAYS picky. It started with babyfood. That should have been my tip off about what the next few years would bring us. He hated all baby food except for Mixed Fruit baby food. That was the ONLY kind he would eat. That and milk. No water, no juice, no finger foods. When we would go out I would carry jars of Mixed Baby fruit with me. When we went to Disney in 09 (Sam was 3 at the time) I had a suitcase filled with Mixed fruit baby food jars. His Milk – Had to be in a certain brand of bottle, certain color and heated for 35 seconds in our microwave. Different bottle, color, off a few seconds on the microwave and you better watch out cause that bottle was getting thrown at your face. The doctor said he was being stubborn and he will take it anyway once he is thirsty enough. Tried that and it didn’t work – days of Sam having super milk meltdowns and he would NEVER drink it any other way. He would go days without drinking anything so I would go back to giving it to him his way. It worked for a while and I didn’t care – at least he was getting vitamins. I used to put all of his supplements and vitamins in his milk, a little each bottle….. When he was 5 he stopped drinking milk. He won’t even go near it now. Now all he will drink is Ice cold water. I was glad he started finally drinking water but hate it that he no longer drinks his milk. I can’t give him his supplements anymore because he won’t take them with water. Back when he only drank milk we would go somewhere for the day and he wouldn’t drink ALL DAY – we would try to heat up milk for him while out but he wouldn’t have it. It was scary at times when it was hot out. So now he will drink water like a fish but that’s it. No juice either.

Sam has been in feeding therapy since he was 18 months old. He was first tested to make sure it wasn’t a swallowing issue that prevented him from eating and it wasn’t. With Sam it’s all Sensory and behavior. We used to take him twice a week for an hour each session but when he started school we dropped it to once a week. At one time his feeding therapist told us there was nothing else she could do for him. That was right before we got Hagrid.

Sam lived on Lays Potato Chips and Cheez its for the first few years of his life. Im not kidding, those of you who are friends of mine now I always carry my supply on me wherever we go….Still do. Sam was the only kid in his class who at lunch time only had chips and cheez its for lunch. Last year he started eating plain bagels. So now his lunch everyday is a plain bagel, chips, cheez its and a bottle of water.

There were a handful of other things Sam would sometimes eat. Cookie Crisp, Marshmallows, Ritz Crackers to name a few but no real food.

When we first started feeding therapy I was asked to pick a “target food” we wanted him to eat. We picked chicken nuggets because it was something we knew we could get just abo9ut anywhere. So before every session I would stop at McDonalds and pick up some nuggets and he would never go near them.  He has such an aversion to food he wouldn’t ever even try anything. Many times he wouldn’t even touch it. Just seeing it or smelling food would gross him out. Many times he wouldn’t even sit with us at the dinner table.

Fast forward to A few weeks after we had brought Hagrid home Sam decided to eat some nuggets…and boy did he eat! He ate about 20 of them….he ate his and his brothers lol. Now we go in spurts with them some days he will eat 15 other days only 2. But this was way huge for us and him!

I am not sure why but since we have gotten Hagrid Sam has opened up so much more to food. Chicken Nuggets is still his only “real food” he will eat….and he will only eat them in the car while we are driving but hey that’s OK I will take that. But he has started eating so much more different foods that before I was scared that he would lose weight and wind up in the hospital but now I have hope that he will be an eater just yet.

He has been eating like a champ lately, and he ALWAYS sits with us at the dinner table now – and even eats his own food while we eat.

Some of his favorites now are – Veggie Sticks, Frosted Flakes – Dry of course all of his cereal he eats dry, cookie Crisp, Fruit Loops, Apple Jacks, Lucky Charms, Pretzels (both hard and soft), Vanilla Ice Cream (soft only) , Fruit snacks, Nilla Wafers, French Fries, Bread, Hash browns, Apples, crackers, oreos (well only the cream – its actually really gross when he eats them), ginger snap cookies, Doritos, popcorn, powdered donuts or munchkins, glazed munchkins…..and some more stuff.

Most of this stuff he just started eating within the past few months (since Hagrid came along) and he won’t eat them all of the time. He goes in spurts. Lays and Cheez its are still his go to food(thank god for Costco where I but bags of 50 at a time) but its nice to see him opening up. I hope by next time this year he is downing some steaks and yummy stuff!  I also want to start adding back his supplements somehow. Havent figured that one out yet though.

I'm sorry but my Dog ate my homework!!

I never thought I would ever have to write this letter to a teacher but thanks to good ole Hagrid I found myself writing it last night. “Dear Sam’s Teacher – I am very sorry but our Dog ate Sam’s homework and ate part of his homework binder”.

Seriously – I can’t make this stuff up. My 8 year old son, Josh was doing his homework after school. I told him it was time to leave to go to Sam’s Speech Therapy. Hagrid can’t go with us for Speech because Sam’s therapist is allergic to dogs. So Josh asked me if he should leave his homework on the table. I told him sure. He asked what would happen if Hagrid ate his homework. I told him not to worry about that. I said Hagrid would never eat your homework and if he did the teacher wouldn’t believe it. So he left his work on the table and we were on our way.

Hagrid really isn’t ever left home alone. He is either out with us or we are home with him. But last night was one of the few nights he was home for about an hour or so alone.

Hagrid is a GREAT doggie but hey with his vest off and nobody home he can cause a little chaos in the house. We walked in the door and he was lying in his dog bed. I walked into the kitchen and saw little black pieces on the floor. I thought to myself – Oh no what is that? I quickly realized that Hagrid went into the little cabinet where I keep Sam’s homework journal and his work. The cabinet door was open and there were a few pieces of torn paper on the ground which was once Sam’s work. I also discovered that Hagrid ate some of Sam’s homework journal!!

Josh of course saw this and said “I told you Hagrid would eat our homework!”

Sam's Homework journal

Hey!! Did you see us on the News??

If you want to skip my post and check us out on the news then Click Here.

 When Guiding Eyes Forthe blind asked me if I would let the News come to our house to interview us about Sam and Hagrid I didn’t have to think to long about it. Of course I would! How could I say no to an organization that has changed our lives so much? I couldn’t and I wouldn’t. I have made it a mission of mine to spread the word about Guiding Eyes – Heeling Autism and what a wonderful program they have. I also like to raise awareness about Autism and Autism Service Dogs.

The morning came and I was so nervous. I was trying to keep my house clean and more importantly have Sam clean and keep his clothes on. He has this nack for knowing  when someone will be at the house about 5 minutes before  they arrive. That’s usually when he will throw his food all over then take his clothes off and want to take a bath. Well this morning Sam was being awesome! They were supposed to be at the house at 10 but they were running late. I knew the later it got the more annoyed Sam would become. He didn’t understand that anyone was coming over but he did understand that things were different. I am sure he could feel my stress plus I was following him all morning with the broom.

Caroline and Michelle from Guiding Eyes arrived to the house first. Rob and I saw Michelle carrying a box of Munchkins from Dunkin Donuts and PANIC set in. Sam LOVES Munchkins. He will only eat the powdered ones but he must go through the entire box. He eats one and the next he will crumble into sand and throw it around, eat another, crumble another…etc…In other words he make a freaking mess!!! I ran to the door before Sam could see them. I was actually very rude now that I think about it. I pretty much opened the door and ripped them out of Michelle’s hand and told her I am hiding these now!! I’m not even sure if she brought them for Sam or for herself.  Well Sam didn’t see the box but he smelled them. He was searching the house for them. I finally gave in and gave him a few and sure enough as he was eating them the News showed up.

It was Dr. Jay Adlersberg from WABC Eyewitness News. I was nervous because I wasn’t sure what they were expecting to see. Sam won’t sit with us and chat or sit with us while we chat. Sam doesn’t sit still much. Plus he gets very on edge whenever there are new people in the house. Dr. Jay had asked if Rob and I could sit on the couch for the interview but we figured it would be best if we were interviewed one at a time so the other could keep an eye on Sam. Sam isn’t the type of kid that can be left along – ever!! He needs to be watched pretty much at all times. He likes to put stuff in his mouth, he will try to touch electrical outlets and he will get naked!! We decided that I would be interviewed first and Sam was standing next to be – They asked me to play with Sam on the couch for a minute while they filmed. Talk about unnatural – I asked Sam for a kiss, he gave me one, and then started to pull down his pants lol. Rob took him in the other room. They interviewed me, then Rob. I took Sam outside while they were with Rob. Next they interviewed Caroline. Then they took Hagrid and Caroline outside. After Dr. Jay sat with Hagrid filming his intro….Then finally the time I was waiting for – To tether Sam and Hagrid and go for a walk!! I told Dr. Jay in the beginning if we went outside and walked while doing the interview then all 3 of us would be in it at once. Sam and Hagrid are flawless outside as a team. But he wanted to do the interviews inside. I was happy though and so was Sam to get out for a walk. He was getting a little upset because they kept having us walk just a few feet then turn around and walk more. Sam doesn’t like constantly being turned – he likes to know where he is going….which usually when we walk we go right down the block. We then sat in the driveway and Sam was getting hungry – we told him we would take him for some McDonalds as soon as we were done….We wrapped it up and Sam ate 20 chicken nuggets and some ice cream!!

Here is the link to the News clip - How pets help kids with Autism

Remember the camera adds on 10 lbs.…..lol…..I saw this and realized I need to start my New Year’s diet.. A little late or a little early however you want to look at it.

Anyway it was about Pets helping kids with Autism and I kept telling him Hagrid isnt a "Pet" Dog he is our Service Dog.....there is a difference.  But all in all I think it came out good and hopefully raise more awareness for Autism Service Dogs and Guiding Eyes For the Blind - Heeling Autism.

Sam and Hagrid enjoyed watching themselves on the News!!

 

 

Anyway this wasn’t the first time we had the cameras in our face. Back in January we were approached by the BBC and were asked if they could film us for an Autism documentary they were doing. We said sure! Rob didn’t want any part of it but I felt like we had too. If we could help one person who saw it then it would be worth it. (Kind of the way I feel when people tell me they are now on the list for an Autism Service Dog after reading my posts J )

They came to our house for 2 days. This was before we had Hagrid and Sam was at his worst! It was 2 looonnnggg days. They watched us eat, hang out; play, and they interviewed us. That wasn’t the end though. They filmed Sam at school several times. They came with us to Sam’s Speech and Feeding Therapy for 2 hours and filmed. They also spent a day with us at the Local Aquarium…Yes filming the entire time. It was stressful but I was glad I did it. They went back to London to edit it. We had gotten the call several weeks later that they took a different direction and we weren’t going to be in it!!! UGH!! Imagine that!!! All that filming for nothing!!  They sent me a copy of the DVD that they made and I quickly realized the direction they went in…..Older Verbal kids with Autism. They clearly didn’t want to show all the faces of Autism, only the ones that could talk to them.

The BBC crew were filming us when the Giants won the Superbowl.Well not during the game I mean that time of year. We had gotten them shirts to bring back to London since my boys and hubby are huge Giants fans. In this picture is from left to right - Louis (interview guy), Jamie (camera man and director), Sam, Freddy in the back (sound guy) and Marco (the guy who sets it all up). They were all very nice.