Firstborn's Journey to Diagnosis Part One

In honor of Autism Awareness Month, I thought I would write a little about our journey to getting Firstborn's diagnosis.

Looking back on things now, the warning signs were all there, but I didn't see them. To use a metaphor, I didn't know all the things I was seeing with my son were all pieces of a bigger puzzle. The Autism puzzle.

When Firstborn was about eighteen months, it is apparent to me now that he took us quite literally at our word. We would play a game where he would put his blanket over his head and we would say, "Where is firstborn? Where is he? I don't see him. I can't find him." He would then pull the blanket off of his head and we would act surprised he was there. We would all giggle and laugh and have fun. We thought he would perceive this as a game since Firstborn had reached the milestone where he could find an object we would hide under a pillow.

One day when we were watching a friend's very active toddler, Firstborn was getting visibly overwhelmed. He climbed onto our couch and put his blanket over his head. The little boy climbed the couch as well and proceeded to shower Firstborn with lots and lots of attention. The look on Firstborn's face was one of utter bewilderment. Why hadn't the blanket trick worked? Why was this little boy still engaging him?

When Firstborn's diet became more and more restrictive, we wrote it off as being a really picky eater. Everyone assured us he would outgrow it. The fact that he cried, gagged and sometimes threw up when presented with new foods or textures was all a part of that pickiness. It was weird that my kid cried when I offered chocolate ice cream, but that was all. Firstborn was also able to discern real Cheerios from the generic kind--even if I hid the generic kind in a Cheerios box. He would gag and throw up if I tried to make him take a bite of them after he discovered the difference.  He loved pepperoni pizza and the flavor the pepperoni left on the crust, but would not actually eat the pepperoni. If a texture was wrong on even a favorite food (stale, mushy, etc) he would gag and throw up.

We had other red flags too. Firstborn would cover his ears in situations most people would not. We took him to see movie, "Thomas and the Magic Railroad". He absolutely loved Thomas, but spent the entire movie covering his ears. He also covered his ears the very first time we went on " it's a Small World" at Disneyland. Storms have always terrified him.

Firstborn also lined up his cars and would spin the wheels.  I thought he was organizing his cars.

He engaged in a lot of parallel play, but was often in the sidelines watching. He didn't seem to enjoy talking to other kids as much as he enjoyed talking to adults. I thought he was just shy.

When he asked to watch a video, he always called it by its full name. He would ask to watch, "Cinderella II: Dreams Come True" instead of just Cinderella II.

We used to have a cling map of the United States we put on our fridge. The map had labels for the states and each week we learned a new state. At three He was better at naming all the states than his high school babysitter.

Firstborn also did not deal with frustrations well. He would shut down and cry or completely freak out in what he perceived as a crisis situation (like if the milk spilled). It was hard for me to tell there was any difference between toddler/preschooler frustration levels and those of someone with more challenges.

When he was a little older he had a lot of anxiety related to school and making friends. In encouraging him to talk to new kids, I asked him, "What is the worst thing that could realistically happen if you talk to them and ask if they want to be your friend?" To which he answered, "They'll want to kill me."

We've worked through some of his anxieties, but as I have learned, sometimes anxiety can sneak back into your life, even when you know it is illogical to feel that way.

As he got older he began attending Cub Scouts. His Wolf Den leader is the one who first spoke to me about the possibility Firstborn might be on the Autism spectrum with Aspergers.

My first reaction I will admit was anger. How could she suggest anything was wrong with my child? He was shy, not Autistic. He could talk to adults just fine, he made eye contact, and he had one on one friends.

When I was younger I had the opportunity to hear Kim Peek, who was the inspiration for the movie, "Rainman" and his father speak at a conference. I did not see any resemblance between Kim and my son.

How little did I know that every person on the Autism spectrum has their own unique set of challenges.

When I calmed down I did some research and began to realize more and more that Firstborn probably had Aspergers. I talked to the school counselor and psychologist. They agreed Firstborn had several traits of having Aspergers. I expressed my apprehensions about labeling and therefore limiting my child. They were happy to comply.

We did get and had been getting supports for Firstborn in the form of individual
Coaching/counseling, small social group meetings, allowances from teachers for extra testing time or verbal testing (he was such a perfectionist he wouldn't write down his answers if he could not make it perfect. It wasn't until his teacher began to verbally quiz him we understood this).

Yet because of my fear and ignorance, I didn't get things written down in any official capacity like a 504 or IEP.

I wish I knew then what I know now.

More of Firstborn's story on another day.

20+ Things I’ve Learned from Our Trip to Disney (Including Tips for Families with Toddlers and Special Needs Kids)

I'm going to post my thoughts on the new DAS system at Walt Disney World in a separate post.  I wanted this post to focus on more general tips to pass on.

1)  Even though the 6 ½ year old may be physically capable of doing all the walking, it’s still a good idea to get a double stroller.  We initially got a single stroller for the baby, but we found the six year old didn’t keep up well when we were moving fast, and one time got confused at which direction we were headed, and was lost for a few minutes.   We did much better when we had a double stroller.  

2)  If your baby naps, using a Disney park stroller will make napping in the park very difficult.  You’ll have to put down some sort of padding or pillows to help your baby be comfortable.  We had our puppy backpack, which is stuffed and soft enough to work as a pillow.  We also used jackets and a lightweight and smaller than usual blanket to help cover the baby.  I would seriously consider getting a fully reclining stroller.  My husband didn’t want to deal with transporting it, so we made do with the Disney strollers and he carried Baby Girl.  There are no storage baskets, though and if the baby gets out while there are things on top or strapped to the back, the stroller will tip over.  

3)  The “Stroller as a Wheelchair” tag proved invaluable for our baby with sensory issues.   One of the perks of the Disney park strollers is they are low to the ground and very easy for the kids to get in and out independently.  It was clear to us that it became her haven from all the stimuli.  She would get excited seeing her stroller and would climb in it.  She would also get agitated being out of the stroller.  When she did that, we would use it as a wheelchair.  We did our best to get by without using the option, but it definitely was needed on many occasions.  We brought a little blanket to help her further shut out stimuli. 

4)  Always, always, always bring the noise cancelling headphones.  Baby Girl did okay with the noise of the fireworks at Magic Kingdom, but didn’t like the loudness of the Indiana Jones spectacular or Fantasmic.  We hadn’t planned on attending either of the Hollywood Studios events, but we did.  I wished dearly I had just left them in the diaper bag.  

5)  Park hopping may be nice, but too much can be a bad thing.  I began planning our trip more than 180 days in advance.  I was on the phone at 6 am 180 days out from our resort reservation to get our ADR's.  I managed to score a reservation at Be Our Guest, and a couple of other restaurants we have always wanted to try but could never get reservations for before.  Unfortunately the times and/or days didn't really work with my overall plan to spend the days in the park with the lowest predicted attendance.  The food was really good on this trip, but my hard-to-come-by dining reservations left us traveling from park to park in order to meet our reservations.  (And feeling rushed and a bit short-changed).  In a word, I didn't plan it very well this time. 

6)  FastPass+ is a must.  With FastPass+ you can prepick your fastpasses online before you leave home.  This means you choose your times and the order you want to ride the rides.  (And you can plan around reservations or other planned down times).  How cool is that?  Additionally, you can change your choices once you are there, though we didn't take advantage of that because I was under the impression you had to go to Guest Services each time.  I understand going to Guest Services to change things is the most reliable way to do it, but according to the survey Disney had me take you can do it via the My Disney Experience app.  Either way, I also recommend bringing a written copy of your choices.  See below. 

7)  The WiFi in the parks is good, but still unreliable.  I don't have a smart phone, but I do have an iPod touch.  I was the primary planner in our party and we never were able to successfully link my husband to my account.  It was a challenge at times to check our FastPass+ plans on my iPod because of the WiFi issues.  We had the most issues accessing it at Hollywood Studios and Animal Kingdom.  I recommend you still bring a written copy of your FastPass+ times and other reservations.

8)  Plan for slow times like swimming.  This is a must for families with small or ASD children.  (We have both).  The kids really looked forward to the downtime and using the water slide at our resort pool.  We also found out by accident that they offered marshmallow roasting and movies in one of the resort building courtyards every night.  These turned out to be a welcome and surprising diversion. 

9)  Like many families out there, I've been searching Pinterest for great ideas for packing and preparing for our Disney trip.  Two tips I used that I particularly loved:  1) Using little pant hangers on the clothes lines in the bathrooms helps your swimsuits get more air circulation and therefore dry faster.  I also brought clothes pins to keep them from sliding into one big heap on the clothes line.  2) Packing the little kids' clothes in ziplock type bags for each day was a huge time saver.  The socks, underwear (or diaper), hair accessories and everything were included in the bag.  All my husband had to do was know which bag to pull out and he could dress the baby in no time.  A spare baggie of clothes thrown in the diaper bag made sure we had a change of clothes for our baby as well.   

10)  Hanging pop-up hampers and mesh laundry bags are extremely handy.  I found pop-up hanging hampers at Wal-mart and they made a world of difference.  We didn't want to put a hamper on the floor (we're always a bit terrified of bugs) and using the hampers allowed the clothes to air out a bit before we put them into the designated "dirty" suitcase.  The mesh laundry bags kept the laundry contained in the "dirty suitcase" and made it easy to pull out and do laundry once we hit home.  I'm definitely going to be updating our packing lists to reflect these. 

11)  At the Halloween party you can focus on candy and characters or you can focus on rides.  It’s hard to do both.  And even though they do not show up on the character list, the seldom since Princes, like Flynn, Charming, and Phillip, show up with their Princesses on MNSSHP nights.  There is always a long line, so get to them early!

12)  Get the baby into Fantasyland as soon as possible.  We didn’t, and aside from meeting Princesses and riding the teacups, she missed it because the times we were there she was tired and ready for bed.  Don’t put it off.  It is by far my biggest regret of the trip.

13)  Wearing something as simple as an Autism hat can make a difference in how your child is treated.  Acroboy was having a hard time remembering his personal bubble (not bumping into others), making appropriate eye contact and not blurting out odd things.  Instead of withering glares like I have received in the past, I got a few sympathetic smiles.  Acroboy was even picked to speak with Crush at Turtle talk.  I’m not sure if it was because he was wearing his “I Rock Autistm” hat or the fact he sat himself down front and center of all the kids, but he was thrilled to have been picked.  

14)  Character dining reservations require a credit card to reserve it and need to be cancelled by 11pm the day before.  Fantasmic dining packages need to be cancelled two days before.  Don't try to cancel it any later than that--(even if you want to keep the dining reservation and cancel the Fantasmic part, it is an $10/per person cancellation fee). Do not forget to do this!  And if you have sketchy cell or WiFi service, you can always stop into Guest Relations to take care of it. 

15)  If you character dining and your baby girl doesn't have much hair, don't dress her in a Minnie Mouse dress if it is not clear from the waist up it is a dress.  We dressed Baby Girl in a little dress we found at Target, and when she was sitting half the princesses thought she was a boy.  (If you look at the link you can see the top is black and can be mistaken for a boy t-shirt).  I should have gone for the Snow White version.  

16)  Food allergies will be accommodated, but plan on extra time into your schedule.  It took us an hour and a half to eat at Be Our Guest.  The food was really great, the atmosphere was incredible and yes, the grey stuff was delicious. We got to our 8:50 reservation at 8:30 and were seated fairly quickly.  We didn't get out of there until after 10:00 and Baby Girl was a wreck.  My husband took her back home while I took those who were interested in the New Fantasyland around. 

17)  If you want to explore the New Fantasyland without a toddler who will melt down, going around at 10:00 at night will almost guarantee you'll walk onto everything.  We walked right up to Daisy, Minnie, Goofy, Donald, the Little Mermaid ride, etc.  We missed seeing Gaston, but we got fairly clear pictures of his tavern.  This was a particularly good thing for my spectrum kids. 

18)  If you pre-purchase the PhotoPass+, get your red photo card immediately.  You may have a voucher in your info book they send you--find it and turn it in immediately.  We ran into issues with not having the card the first couple of days and therefore losing a couple of pictures.

19)  If part of your group is going on a ride like the Rockin' Roller coaster it's easier to give them the red photo card than to get the photo number and have to go to a kiosk later.  

20)  Don't trust your iconic photos to just one PhotoPass photographer. We did at Hollywood Studios and didn't actually get a picture of the giant sorcerer's hat behind us.  We thought he took it, but it never showed up with our photos--even after looking for it at Guest Relations.  So my advice, take advantage of as many photograph opportunities as possible. 

21)  And speaking of photograph opportunities--take the extra five minutes in the morning to get the photo if you can.  Half the time we were too tired and rushing out the gates to one of those dining reservations I had made to take a photo.  I wish we had done the photos first thing.  It's my second biggest regret. 

22)  Let go of any expectations you'll be able to do it all.  Given the ages of my children and expense of Disney, we figured this will be our last trip to Walt Disney World as a whole family before the kids graduate, and leave for college and missions.  We'd love to take them every year, but it's just not possible.  I had grand plans going in to this vacation, but about a day in I realized I needed to let them go.  We just weren't going to be able to do everything we had dreamed of in the time we had.  If I attempted to make my family get it all in, I was just going to make everyone miserable.

As I mentioned, on most days after hitting their favorite attractions and a couple of new ones, the kids just wanted to go swimming--so we went.  We took a few evenings off and swam and discovered the marshmallow roasting and courtyard movies that our resort offered every night.  It was a welcome change of pace and added some special memories into the mix.  I do regret not taking Baby Girl to more of Fantasyland, but I also know she's too young to remember this trip.  My older kids will remember some unique memories and a happy vacation, and that's what I really wanted in the end. 

So let go and enjoy the ride.  Remember what is the most important thing, that your family spends quality time together making a lifetime of happy memories.  Don't let your regrets overshadow the good memories you make.  I think my favorite memory is sitting by the pool after a fairly full day at the parks, snuggling with my baby while I watched my family play together in the water.  It was a moment of peace and happiness that I think will stay with me for the rest of my life.

I wish you similar memories.

Reviewing the new DAS and Getting the Most Out of the DAS and FastPasses at Walt Disney World During a Slower Time of Year

It's November 2015, and a few changes have been made to the DAS system.  As most people know, Disney World has been moving over to a system using Magic Bands.  At the time I wrote this in November 2013, there were still FastPass kiosks where paper FastPasses were handed out.  Now a large portion what you do in the parks (from tickets, to dining, to paying for merchandise, room keys, and FastPass+ admission) is done with Magic Bands.  (I'm not going to post a how to on Magic Bands at this time).  Now even the DAS is controlled via Magic Band.  I'll explain how this works. The old post is in black.  Outdated information has been crossed out in PURPLE, new information has been added in RED. 

We just made our most Knowing we were heading to Disney, I have to admit I was very nervous when I heard about changes being made to the Guest Assistance Card.  I understand why they felt compelled to make said changes (I'm sad that so many people ruined a great thing for my kids who don't get many breaks), but understanding why did little to relieve the anxiety I had for how this would affect my kids.

I confess I made more than a few phone calls to Disney to get as much information as possible about the new DAS system which replaced the old GAC on October 9, 2013. The cast members were courteous and as helpful as they could be though I couldn't get definitive answers about how they would handle my unusual situation with four children being on the spectrum and there being a total of eight of us . I was directed to pretty comprehensive information on their website.   I'm posting links, but in case you can't get to them I'll tell you how to navigate there.  Go to DisneyWorld.com.  In the right hand corner you'll see a HELP drop down menu.  While holding down your left mouse button, select the "Guests with Disabilities." This will bring up a new page.  On the disability page, select, "Guests with Cognitive Disabilities."  There are helpful suggestions there regarding stroller rentals, rider switch, and break areas.  There is a pdf guide you can download with information specific to each park.  There is also a link to a page dedicated to the Disability Access Service card. 

How it works:

You go to Guest Relations in any park and talk to a cast member.  Your whole party must be with you.  Based upon your needs, you will be issued a DAS on your Magic Band.  They will take a picture of the child who needs the DAS, They will then scan his/her band as the primary DAS party.  Each person in the party will then have his/her Magic Band scanned as well and attached to the DAS.  We had no issues with all eight of us being attached to one band.    

issue it for the number of people in your party and you will sign the back saying you understand the rules and will not abuse it.  It's good for up to 14 days depending on your tickets.  (Multi-day tickets are valid up to 14 days after the first day is used, so this makes sense). 

You can see our Photoshopped DAS to the right.  

13 Tips and/or Mistakes to Avoid When Taking Your Autism Spectrum Child(ren) to Universal Studios Wizarding World of Harry Potter

This post used to be titled, "Why I Won't Be Taking My Autism Spectrum Children Back to Universal Islands of Adventure"

I generally try to be pretty positive, and I realized my post and title were not at all positive.  So I'm rewriting this post in the hopes that my mistakes and errors will help someone else--especially if that someone else has a child(ren) on the Autism Spectrum--have a better time than we did. If you want the quick list, head to the bottom of the post. If you want to understand the story behind the post, keep reading. 


To be fair, I feel I should tell you I have spoken with a couple of other moms who had a completely opposite experience to the one that I had.  But like I said--if my experience can help others avoid the same problems, then at least something good can come from our experience.

*******

I am fortunate that my kids are high functioning on the spectrum.  I know others who are not as lucky. Even though the kids are high functioning, we still have challenges.  While they don't seem to notice if they infringe on other people's personal space, they become quite agitated when others stand close to them or inadvertently bump them.  They have a difficult time waiting for long periods of time.  We have a range of sensory issues from those who get overwhelmed by sound and light (or lack of light), and those who seek more stimulation.  We have phobias of spiders, bugs, dark, heights, storms, etc.  It makes for an interesting life--let alone vacation.

These same kids who can hyper focus on one subject LOVE Harry Potter. If you have an ASD child you know what I mean.  I know more about Minecraft, Pokemon, dinosaurs, wolves, owls, Mario, trains, planes, whales and dolphins than any one person should know about.  This is because ASD children will often find a subject that sparks their interest and will learn everything there is to possibly learn about that subject and then want to tell you everything they have learned. 

I didn't mind the Harry Potter obsession because I found the books equally as entertaining as my children did.  I took the children to a weekend long release party for the final book where a town transformed itself into Hogsmeade. There were giant chess games and a sorting hat for children, as well as throngs of people dressed up as Harry Potter characters.  My favorites were the girls I saw dressed up as house elves.  They were adorable.  And I still chuckle when I think how the bathrooms in the library were renamed, "The Rooms of Requirement". 

We loved the experience of the town transformed, and were thrilled when we heard Universal was creating Hogwarts and a wizarding village complete with shops like Zonko's and Ollivanders.

****
You will recall with this post, that we used the Harry Potter theme to tell the kids we were going to Orlando.  We were really looking forward to it.

To prepare for our trip, I tried to do some research into the rides at Universal.  I wanted to know what height and health restrictions existed, as well as what rides my kids might find too scary.  (If you've read this post, you'll recall my kids freaked out at "It's Tough to be a Bug", and "Stitch's Great Escape".   I had a difficult time getting all the information I wanted from their website, so I decided to call.  The employee I spoke with on the phone was extremely helpful in me figure out in advance my kids would not do well with attractions like, "Twister", and "Spider-man" and even might find Harry Potter challenging.  He assured me they had Guest Assistance Cards (called Passes there). We also realized there would be a lot of rides Acroboy would miss out on because of height.

I relayed the information to my children and they decided it was worth the risk--they loved Harry Potter that much.

When we first arrived at U:IOA, we purchased our tickets and then found Guest Relations.  It was only then that we were told that Universal did not issue any GAP's when attendance was "low" and the "average" wait time (of the whole park) was about 20 minutes.  Not only that, the GAP is not good for a few of the rides--"Harry Potter and the Forbidden Journey" being one of them.  I'm sorry to say the employee at Guest Relations was pretty rude when we were requesting assistance. 

Disappointed, we moved on into the park.  We pretty much made a beeline for the Wizarding World of Harry Potter.  Overall park attendance may have been low, but I'm pretty sure they were all in the Wizarding World of Harry Potter.  



See the crowds?

I knew from my research that would should have gone straight for "Harry Potter and the Forbidden Journey", but my kids had to take in everything at their own pace.  And sometimes no matter how much coaching you do before hand, this is not a battle you are going to win.  I did not want to start the day with meltdowns because I dragged them to the Forbidden Journey. (In retrospect they might have been smaller than the meltdowns that happened because we didn't make a beeline there).

Depending on which way you enter the Wizarding World, you will come across the "Dueling Dragons" coaster first.  My kids could not resist the pull of a roller coaster and rode it.  One of them came off the ride in tears because he was overwhelmed and the rest enjoyed it.  When I asked the overwhelmed child (Lawboy) about it later he said the coaster was, "Awesome!"  Hmmm.  Not how I remember it. Funny how time can change how we think about things.

The shops also pulled them in, and I have to admit the shops are very well done. 

We approached the castle and encountered an employee directing patrons to the line and checking heights of children. We saw him turn a family with a son who was too short away.  Knowing our youngest (Acroboy) was too short we asked where we should wait and were directed to the gift shop.   He never asked or offered the child swap option.  We had talked to probably half a dozen employees at this point and were never once told about the child switch option.  I don't know why it didn't occur to me to ask, but I didn't.  Now that I think about it, I think the entrance to the child swap is even in the gift shop, but I was ditsy from feeling so frazzled.  Navigating ASD kids through a new experience can be a challenge, but it can also be rewarding.  I was feeling challenged at this point.

In the past at other amusement parks ::coughdisneycough:: when we all approached a line together and someone didn't make the height cutoff, we were told then and there how we could switch off riding.  If anyone from Universal comes across this blog I ask that you train your employees to offer this option. (Please at least make it clear to frazzled moms like me where you go for child swap). 

The estimated wait time was 45 minutes.  This is twice the limit of what my kids can typically handle, but they trudged on.  One of the kids was already in tears (remember that roller coaster?), but wanted to go on Forbidden Journey so badly he tried to "suck it up".  An added problem was bags are not allowed on the ride, so my kids checked their fanny packs into a locker and did not have access to the DS's the whole time.  My husband and I kept texting throughout his wait.  It gotta say it was a train wreck.  Whirlwind kept bumping into others, trying to climb on things and caused general chaos.

I was so upset at the messages I was getting (and admitedly a little hormonal too), that I went to a second Guest Relations booth inside the park. I emotionally explained to them about my boys and their challenges--wanting to know what, if anything, could be done to help my boys.  Bruce was very sympathetic, and issued us a single GAP even though it was light attendance.  The GAP is not good for Forbidden Journey, though he tried to make a note for us to use it on it.

Eventually we all joined up again.  The kids were pretty tired and agitated. Only Whirlwind wanted to go anywhere near "Harry Potter and the Forbidden Journey" again.  The rest of them wanted to just sit quietly and rest for a bit.  They assured me I wanted to go through the queue to see everything.  I gave the GAP to them in case they changed their minds and wanted to go anything.

I should have kept it.

I did enjoy looking at everything, but Whirlwind was having an even harder time waiting and having others in his proximity.  I tried to keep him distracted by asking him to point out things to me he had seen the first time around. It didn't help that the couple in line in front of us kept stopping the line so they could take pictures of them standing in front of significant props or rooms.  The rooms were definitely photo worthy, though I think I would have made a different choice in that situation.  Finally Whirlwind and I got to a point where we volunteered as solo riders and we passed them up. 

As Whirlwind and I were exiting the ride (over 45 minutes from the time we entered the line) I encountered the second really friendly and helpful employee of the day.  Elizabeth with curly hair asked how I enjoyed the ride. Poor girl did not know what had happened before this point in time.  I commented about the lack of child switching as an option.  She informed me that there IS child swapping--in fact they have an area devoted for parents and younger siblings to wait.  She apologized and told me if I brought back Acroboy, she would give him a certificate for him to come back and ride (a future express pass as it were) when he was the proper height to ride.   I did so, and she was gave us the certificate and wished us a good day. 



At this point everyone was pretty exhausted and hungry.  We entered the Three Broomsticks to eat.  It was a very popular place to dine.  We were hurried through the queue and sent to a kiosk to order our food.  We never once saw a children's menu amongst all the menu boards.  This is what was on the menu:
* Rotisserie-smoked chicken
* Chargrilled ribs
* Turkey legs
* Fish and chips
* Shepherd’s pie
* Cornish pasties
* Potato leek soup
* Split pea soup
* Ham soup

My children's sensory issues extend to food.  This was not an ASD kid friendly meal.   I now know there IS a children's menu which includes chicken fingers and mac & cheese.  Once again we were rushed and no help given to point out kids menus.

We ordered Butterbeers for everyone and some of the kids thought the foam was disgusting. Only after spooning it off did they drink it.  The rest of us loved it.

Lunch for my family of seven was over $100, and I hate to say not worth it.  There was a lot of wasted food because the kids didn't like what they had ordered.  I'm sure we would have done better ordering off of the kid menu since it is has chicken fingers and mac & cheese. 

We wanted to see Ollivanders, so I jumped in line while my husband took the kids around the shops some more.  Firstborn loves owls, so he adored the owlery.

When I was close to the entrance, I texted my husband and he brought the kids.  I had previously let the people behind us know I was going to be bringing my family into line, but that they were waiting elsewhere because of issues related to to Autism.  They were kind and gracious.

It was pretty amazing to go inside Ollivanders.  I was filming right away and to our delight, Whirlwind was chosen to pick a wand.  It was the single best part of the day by far.  Whirlwind had saved all of his money throughout the trip to Disney and held off on buying anything because he wanted a wand so badly.  Saving his money and delaying gratification was a major accomplishment for him. Major accomplishment.  Big.  Huge. Ginormous.  (Are ya starting to get the idea?)  :D This was a proud mama moment.

Whirlwind got to buy his wand, though we had to deal with a small meltdown from Princess Ballerina.  She did not have any money left for a wand and had not been chosen.  I tried to gently point out that at least she could say her brother had been chosen for the wand ceremony.  The other sweet children we entered with did not have that pleasure--to them some random boy got picked.  Additionally she had just spent her souvenir money the day before buying a Belle costume for her 18" doll from Target.

Funny thing is in all the time that has passed since the trip, I've only heard her lament the lack of wand twice.  I'm pretty sure that was a jealousy motivated meltdown.

We left the Wizarding World of Harry Potter finally and went to Jurassic Park.  The ride was wet and cold and the dinosaurs were too much for Acroboy.  We decided to blow off steam in the dinosaur play area next to the Pteranodon Flyers.  The kids saw Pteranodon Flyers and "had" to ride it.

It's too bad they have all of three working flyers.  (Really--I paid attention to who was getting on and off and how many flyers came in between).  It makes for a ridiculously long wait.  Seriously.  Three working flyers--two riders per flyer, you do the math.  By the way, the estimated wait time of 20 minutes was waaaaaay off.  (So, no, we didn't get to use the GAP here either). 

We let them run around for a long time in the dinosaur play land.  The sun was setting and we it was getting colder (for November at least).

At this point everyone's nerves were shot, they were overstimulated and ready to just leave.  We walked around counter-clockwise towards the entrance, but no one had a desire to ride or do anything else.  All the waiting and waiting and waiting and then hyper-stimulation in the Wizarding World of Harry Potter left us exhausted.  Even though we had finally gotten a GAP, no one wanted to ride anything else.

For a one-day visit to IOA and food it cost us nearly $800, and in my opinion it was not worth it.  I understand the more days you visit, the cheaper it becomes per day.  However, with unless you are REALLY into roller coasters, or getting wet,  this park doesn't have much to offer.

If you decide to go, I wish you better luck than we had.  My tips/advice:

1. IF you can afford it, staying at one of the official Universal hotels will get you early access into the Wizarding World of Harry Potter and a less crowded meal at the Three Broomsticks. Personally even at the off-season when we went, we can't afford it, but more power to you if you can. 
2. Get to Islands of Adventure early and make a beeline for Harry Potter and the Forbidden Journey.  Do not get distracted by anything else.  Annnd good luck with that.  I couldn't pull it off, but I hope you can. 
3. If you can't get there early before the park opens, you might want to make the Wizarding World of Harry Potter your last stop. I understand now that things often slow down towards the end of the day.
4. They DO have child-swapping.  Don't let anyone at the ride gates tell you otherwise.  Ask away until you find it.
5. Bring your electronic gadgets to pass the time, BUT make sure they are small enough to sit in a secure pocket. This will ease the time spent in line. 
6. If park attendance seems to have picked up, check again for a GAP.  
7. There IS a children's menu in the Three Broomsticks.  Know your options before you go, ask to see it or split the meals.  
8. Split the Butterbeers until you know everyone likes it.  
9. The line for Ollivanders is long and often in the sun.  If you have proximity/waiting issues like we do, have one member of your party wait in line until you have about 15-20 people in front of you.  Call in your group at that point.  Explain early on to the people behind you what you are doing and why you are doing it.  Most people are understanding when they know you're working with disabilities. 
10. I think the fact I was filming Ollivanders from the second we stepped in the door and that Whirlwind was right in front of me AND the right age (tween) for "needing" a wand helped him get chosen. BONUS TIP:  Prepare everyone for the possibility that none of them may get picked.  If by chance one of them does, teach them to look at as a family victory.  "Isn't it great for all of us?"  That might be a challenge too, but it mostly worked with our family.   
11. Keep your kids distracted when you are near the Pteranodon Flyers so you don't have to ride them.  It will also be a challenge, but you'll thank me later.  (They are kind of noisy when they are overhead so be prepared to sing a Barney song or something).  
12. Buy your tickets before hand and/or look for deals.  I confess we bought ours at the gate even though I know better than that. 
13. Skip the park all together, make your own wands and watch the movies over again if you are not into roller coasters.  You'll save a boatload of money that way.  

Good luck!  I wish you a stress free and wonderful visit. 

My Old Nemesis Anxiety is Back

Much as was hoping to avoid anxiety it's here.

I tried to prepare for and anticipate any triggers.  I brought earplugs and an eye mask to the hospital so I could drown out extra noise.  The earplugs were just enough so I couldn't hear the baby down the hall crying, but I could still hear our bundle of joy in our room.  My sweet husband spent the first night with us and held our daughter so I could sleep.  I was able to get some sleep.

The next night I had sent my exhausted husband home to sleep in our bed.  I tried to get some sleep, but was having a very difficult time.  It was the second night "wakefulness" night.  Baby Girl just pretty much wanted to party.  Two other new moms were also having trouble sleeping.  The hospital beds were not conducive at all for "sleeping in", and they had no nursery.  Our fantastic nurses came up with a plan though.  They put all three babies in an unused room with one of them on watch at all times.  They rotated rounds, medication stops and everything and allowed us to sleep.  I got four and a half hours and I was thrilled!

The third day we came home from the hospital and it all fell apart.  I have a nursing pillow I use to position the baby as I nurse--the problem was the night time feedings.  I would get sleepy nursing the baby, but then I would "jerk" awake because I didn't want to put the baby in a dangerous position.  I kept doing this.  I would try and lay her down, but she wouldn't sleep for long before waking and wanting to nurse again. 

I also found myself drifting off to sleep in my bed, then "jerking" awake again even though I didn't have her in my arms.

The end result was I slept about an hour.

The next day was not much better.  I got an hour nap and 2 two hour stretches of sleep.  I began to have anxiety that I would never have a decent night's sleep again--even though I have faith that I would get through this like I did last time.  I had forgotten how to fall asleep.  I worried about what kind of mother I would be for my other children and how I would function when my in-laws and husband were gone. This only added to my stress level. 

I talked with my mother-in-law and she reminded me of talk I had recently heard from a modern-day apostle of Jesus Christ.  The apostle had taught us from the New Testament and pointed out that even when Jesus was at his lowest point having fasted for forty days and then having been tempted by the devil, the Savior did not turn inward, but ministered to John the Baptist by sending angels to him.  He served others even when he must have been weary and beaten down.

I realized I was wrapped in my own drama of "will I have a normal sleep schedule again?"  I realized I needed to get outside of myself and serve others.  I could serve my family--especially our new little daughter who is wholly dependent upon me, but I can also do little things to help others.  I can send a note to a sick friend, or call someone on the phone to let them know I am thinking of them.  I can make a few phone calls for another busy mom who is trying to pull together a big activity.  I can help others in small, but meaningful ways.

I also have come to the realization that this is likely NOT the last time I'll ever face anxiety--and that's okay.  Heavenly Father has helped me get through my bouts of anxiety in the past, and I know He will help me get through them now, and when I face them again in the future.  This knowledge helps me because I know I am not alone.  I can also use the experience as an opportunity to draw ever closer to my Father in Heaven and His son, Jesus Christ.  

And that my friends, is a very good thing.

I Feel Guilty

I feel guilty. I really do. And yet i feel justified. I took Acroboy to music time and sat back and watched him act at his worst. I watched him be hyperactive, get in other people's spaces, and not pay attention, and I did nothing. Not a thing, nada, zip, diddly squat.

I did this because I wanted the school employees to see just how much help Acroboy needs. I just want to get him into a preschool setting where he can start working more on some social skills.

One of the other moms commented to me as we were leaving, "Boy, he sure has a lot of energy, doesn't he?"

Yep, I feel guilty.

I explained to her that I had purposely sat back because I wanted them to see how much help he'll need adjusting to kindergarten.

I think I was a little ticked off too, because I got a note in the mail saying there was no record of us ever applying for Acroboy to be in preschool. Umm, right. That would be why we got the letter saying Acroboy was on the wait list. Okay.

Now I have to straighten out this mess.

In addition, Firstborn's grades have been slipping lower and lower in math and science. He gets the concepts, but his anxieties are popping up again. He stresses out over quizzes and test and his mind goes blank for a few minutes. He then realizes how much time has passed and freaks out more. In his mind the missing time means he'll fail the quiz/test. If he fails the quiz/test, he will fail the class. If he fails the class, there is no way he can get into a good school. If he can't get into a good school, there is no way he can provide for his family. It goes on and on.

When I first started talking to the counselor, her first reaction was, "If his grades are slipping, maybe he shouldn't be in honors classes." Hold it right there sister. He gets the information, it's the tests, quizzes and organization problems that are the problem. All you have to do is talk with him and know he gets it. So do that--talk with my kid.

He had a decent handle on his anxieties thanks to the work with the school counselor and school psychologist and amazing teachers we had up to fourth grade before we moved here. Firstborn used to cry every time things did not go as he expected or when he would get himself working into an anxiety spiral. We had a number of student support meetings regarding how to help him. It was because of my friend's comment about Firstborn's behavior we talked to the school and started his diagnosis process. However it was not on an official 504. I've written a separate post on Firstborn's journey to diagnosis.

If I am really honest with myself, i think part of the reason the anxieties weren't as pronounced the last couple of years is I don't think Firstborn has felt quite as challenged at the schools here. Now that he is finally starting to get more challenged by new material and he is getting closer to high school, his anxieties have been creeping back in.

I had asked for copies of the school records before we moved, but I was told they would just forward everything to the new school. I took them at their word--everything would be forwarded. I should have been more adamant.

I went to the junior high to get copies of their current records and while I was looking at them with the counselor, we saw that there are absolutely no notes about any student support meetings, teacher's notes on behavior, counselor notes, or anything other than standardized test scores and grades. Either the notes never made it into the file, or somewhere between the move they got lost.

So there is no record of any supports or diagnosis for Firstborn. I think I have to take responsibility. I did not understand what would be at stake if I didn't put a "label" on my son. I thought I was helping him.

I was wrong and I feel guilty about it.

Now I've got to call our favorite Autism medical center and get Firstborn in the wait list to be reevaluated. I'm going to go about this the correct way so we can get him just a few accommodations so he can deal with his anxiety. He'll be starting high school next year, and the pressure will be on. I need to do everything I can to help him succeed.

I resolve to not let any guilt I feel hold me back. From now on I will be the warrior mom my kids need me to be.

Letting Go

I’m writing this with a heavy heart.  I’ve been hoping since the last miscarriage that we’d be able to get pregnant again.  My family doesn’t think I should even try.  They all seem to take the ectopic pregnancy and two miscarriages  as a sign I’m not supposed to have anymore kids.  I haven’t wanted to go there in my thinking.  It is hard not to when despite only having one tube, I still managed to get pregnant.

I know that while I’m overweight, there are no major medical problems.  Until I got sick in November, I was exercising 3-5 times a week and I had started to tone up and lose inches around my waist. 

My husband has traveled a lot this last year, and I’ve got some major responsibilities with my calling at church (We are asked or “called” to serve in various capacities in our church.  It’s all volunteer—no pay.)  I’m the head of our women’s group at church aka ward Relief Society president.  I’ve got two counselors (other women) to help me, but there is a lot to do.  It’s a juggling act at times. 

I have been praying for guidance and the answer I got was to be patient.  That was a hard answer to get because I know that with every passing month, my chances at another successful pregnancy become slimmer.  

I’m not always good at being patient, but I’ve done my best.   I’m waiting and trusting in the Lord’s plan for my family.  I’ve watched good friends and my sister get pregnant, and give birth.  Two of those babies were due around the time mine were due.  Recently I learned that five women at church are pregnant.  One of whom is a good friend of mine, is pregnant with her eighth.  I knew she and her husband had been discussing having just one more child, and now they’re on their way.  

On the other hand, I’ve begun to see the light at the end of the tunnel and it’s exciting.  My youngest is almost potty-trained, and next fall he should be in preschool.  I will have a couple of hours in which I can grocery shop or run errands sans kids.  That hasn’t  happened in over a decade.  A year and  a half from now, he will be in kindergarten, and I will have more than a few hours by myself.  I’m starting to look forward to that possibility.  

As each month has passed, I’ve see-sawed back and forth between wanting a new little one, and remembering how much work new babies can be.  I went to a book club group where several ladies were pregnant and of course labor and delivery stories came up.  I remembered how much I hate hospitals after the delivery is over, and how edgy I get when I don’t sleep because of the relentless checking-in that can happen.  

I don’t rest when my babies are in the nursery because after labor I am hyper-alert to certain noises.  Every baby that cries I wake and wonder if it is mine.  I’ve tried sleeping with the babies in the room, but every time one of them makes a noise I wake, sit up and look around to see if the baby is waking up or just making noise.  Finally I learned the last time around (with number five) to keep the baby in the bed with me.  He would make his normal newborn sounds and I would just open my eyes to see if he needed me.  If not I would drift back to my dozing/slumber state.  I was always very cautious (I’ve read and heard too many horror stories to not be), and I am a light sleeper, so I took the necessary precautions to protect both of us, and was able to get some sleep for once.  Still, I didn’t fully rest until I came home from the hospital, and though I’ve talked it through, I still get tense thinking about the post-partum stay because of what happened with my fourth child (a really bad reaction to medications that left me sleepless, hyper and hysterical for three days).  

Then there are the midnight feedings and lack of sleep until the baby is big enough to sleep through the night.  The diaper rashes, thrush, and how much nursing hurts at first until your body is used to letting down your milk.  

Oh, but the sweetness!  Is there anything that smells sweeter than a new baby?  Isn’t rocking one of them to sleep against your shoulder one of the best privileges life has to offer?  And isn’t looking at the miracle in your arms and knowing they are fresh from Heaven one of the most exquisite and humbling experiences you can have?  

I’ve been so torn, but I’m close to 40, and frankly biology is playing a bigger and bigger role in this. 

So I’m letting go.  I'm lettting go of the control.  Frankly, it's not in my hands--it's always been in the Lord's hands.  Sadly I'm also trying to let go of the hope I will get pregnant again.  I’m trying to learn to be content  with the fact I’m not likely to have more children.  I am admitting it is out of my hands.  I can’t quite bring myself to get rid of all the baby clothes just yet, but I’m getting there.  

Today I got rid of the pregnancy tests in the picture.  I’m not sure why I was holding on to them. I guess in some ways they are reminders of the babies I had lost.  In other ways, they are anchors holding me in place—not allowing me to move forward because of their weight.  

So they are gone.  They are in the trashcan at the end of the driveway, and they will be gone for good tomorrow morning.  I plan on selling/donating the car toddler bed that is taking up space in the basement.  The baby clothes I don’t want to hand down will go in their boxes and on racks in the garage and get one step closer to leaving the house.   I can’t quite bring myself to get rid of them, because I don’t know what God has in store for me, but I can put them someplace they don’t take up mental energy. 

I am determined to not take this time with the kids I have for granted.  My oldest still talks to me and likes to do things with me.  The youngest still loves to snuggle.  The rest fall somewhere in-between, and so I’m trying to do more things with my kids. Play more games, read more books, make more crafts together.  They are my gifts from Heaven and they deserve a mom who is fully vested in the present, and not mired in the “I wish” of the past.  

I wish you many moments of joy today.

Difficult Year Part II

Difficult Year Part II--Dealing with Grief

I left off my last post having found out I had lost our baby after an ectopic pregnancy.  Most likely our baby had Trisomy 18.  This time I had seen our baby move.  I saw the heartbeat.  I loved (love) that baby with all my heart.  

The next day C1 was in a geography bee at school.  I went to cheer him on, but it felt hollow.  It felt like the world should be stopping so I could grieve.  

My husband was across the world in China when I called him from the doctor's office.  Even though there was nothing he could do physically to bring our baby back, he cut his trip short and came home.  He got home on my birthday, which was two days after I found out we had miscarried.  When he walked in through the door I just melted into his arms and sobbed.  

We talked and talked about our options.  In the end we scheduled a  d&c for the following week.  I could not bear the thought of my baby accidentally being flushed down a toilet.  In truth, I was still having trouble accepting I had lost another baby, and so I asked the doctor to check for a heartbeat one more time before they removed the baby.  They checked, put me to sleep and I woke up after everything was done.  

I still cry thinking about it.  

**********

Turning to my Father in Heaven helped me get through the grief.  In my past, I've had experiences where I thought I knew what my family and I should do.  My husband's job was, at one point, going to take him to Florida for over a year.  Rather than commuting, we thought about renting our home out and renting another in Florida.  I kept trying and trying to make it work.  The arrangements kept falling apart.  My dear sister wisely asked me, "Have you prayed about this?"  

In truth I hadn't.  I figured reuniting my family was a good thing.  Eliminating the need for my husband to travel was a good thing.  That's why I pressed forward.  

When I finally humbled myself enough to pray about the matter, we received inspiration that the children and I should stay put.  I didn't understand why, but trusted in our answer.  That year Florida was hit with four hurricanes and where we would have been living would have required us to evacuate at least three times while I was in my last trimester of pregnancy with Princess Ballerina.  I would have had to do this with three boys six and under who had (though I didn't know it) autism and one in particular that gets terrified of big storms.  

Though having a traveling husband while I was pregnant had its own challenges, I feel grateful for that experience that showed me in very definite, concrete ways the Lord knows better than I do.  

 Always.  

And I should add that my DH (dear hubby) was always able to get on a plane back home to us before any storm hit.  Blessings indeed.

*********

A month or so after my miscarriage I was met  with our ecclesiastical leader for my temple recommend.  (Everyone is welcome to worship in our chapels--whether you are a member or not--but in order to enter the temple--our holiest buildings--you have to be interviewed by ecclesiastical leaders)  At that time  I was asked if I would accept the call as the next Relief Society president.  In our church we all volunteer to serve.  Where we serve comes through inspiration to those entrusted with the stewardship or "keys" for a given unit.  The Bishop is the head of our local unit (or ward) and he has the responsibility to receive inspiration on where individuals serve.  He has two counselors who help him in decisions and management of the unit.  They (the bishopric) work with other auxiliary leaders.  Those auxiliaries are: High Priests Group and Elders Quorum (the adult male groups), Relief Society (all adult females), Sunday School (gospel instruction for the second hour of church for all individuals over 12), Young Men's (males between 12 and 18), Young Women's  (females between 12 and 18) and Primary (children 18 months to 12 years).  Each group has a presidency (a president and two counselors) who have the responsibilities of helping their designated group.  The presidents (or a counselor if they cannot come) meet with the Bishopric and others in a ward council to discuss the welfare of the members.  The Primary presidency is always composed of females.  

As I mentioned, Relief Society is the women's organization in our church.  My responsibility would be to help look after the physical (temporal) and spiritual needs of the women in the ward.  I would also meet with families who needed assistance and help assess what needs the church could help meet as well as counsel /guide/direct/point them in the right direction to gain skills they could use as well. 

I chose two wonderful women whom I didn't know very well at the time to be my counselors.   Susan and Katie.  Susan had been a Relief Society president in the past and she taught me so much.  Katie was younger than I though still a mother of four. 

The first couple of months that I was Relief Society president, there were three funerals in our ward.  I was able to use my own very personal and very raw experience with grief and the comfort I found in the Lord to help others in their time of need.  Though none of us can understand the suffering the Savior went through in the Garden of Gethsemane, the scriptures teach us:

 Alma 7:12 And he will take upon him ^adeath, that he may ^bloose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to ^csuccor his people according to their infirmities.

My Savior endured unimaginable agony as He made the Atonement , and He did it because He loves me, and so He would understand how to lift and help each of us, and because it was part of our Heavenly Father's plan to help us all return to them someday.  I am grateful for that.   

More tomorrow.