Song of My Heart

Okay, this may sound strange, but I was in the car the other day and listening to mp3's.  (That by itself is not really strange).  I have a love of big orchestral scores and in particular soundtracks.  I was listening to Steve Jablonsky's "Arrival to Earth" from the first Transformers movie.  What was strange was that I realized in a way it reflected my feelings about our family's autism journey.

The music starts off low and quiet and a bit dark.  Like something is creeping up on you and you're not quite sure what is going on.  With Firstborn things crept up on us.  We knew he had some sensitivities, but being first-time parents, we didn't realize they were red flags.  We didn't know enough to start early interventions.  We knew Whirlwind had a short fuse and seemed a bit behind his peers emotionally, but we had no answers. 

The strings begin repeating their theme a bit frenetically.  We start learning about Firstborn's diagnosis and putting all the pieces in place.  It was a massive learning curve and really intimidating.  We hid his diagnosis from many people--including him for a long time.  Whirlwind and Lawboy were diagnosed with ADHD and we were trying to figure out the best ways to help them.   We finally find something that works for impulse control only to find that Whirlwind, and later Lawboy, are also on the spectrum and it was hidden by his ADHD.  Acroboy shows signs of being on the spectrum and we finally get evaluations and answers.

The strings change into the main theme and the main work begins.  We are working in earnest on social stories, conversations, food therapies, counseling, support groups and we no longer hide.

The music builds and voices join in.  We find we have many people on our team, though we are not opposition free.

The music continues to swell and rise.  I have hope my children, despite their disabilities, will thrive and succeed.  I have seen so much growth in them.  I am so blessed they do as well as they do.  I recently met my friend's sister, who has a 17 year-old non-verbal son.  I am lucky and I know it.

The music goes quiet with voices singing in a Gregorian-like harmony--a moment of stillness and reflection.  Then come the drums--almost like a warcall.  I will fight for my kids.  I will keep fighting battles and equipping them the best I can to fight their own as well.

The music swells and presses forward.  We will press forward and we will not give up.  Autism may be in my family, but it is not all that my family is.  My kids, my husband and my faith are my greatest blessings from God.  They each have the potential to great things in their own way and I will do everything in my power to help them achieve their goals. 

Misunderstandings

It's taken me a long while to write about this because of how sensitive the feelings of those involved are.

Let's first visit the day we found out that not only was Acroboy on the Autism spectrum, but that he has ADHD as well.  I really wasn't surprised by the dual-diagnosis, but it still hit me hard.  I knew with the diagnosis just how hard life could be for Acroboy.  Add to that pregnancy hormones, and it was a pretty emotional day.  Even though I expected the diagnosis, it feels like a mourning for the child that will never be.

I was driving home from our favorite Autism center, and I got a phone call from my sister (J).  She told me that I should not have my mother come out to help with the new baby because, "to be blunt, your kids overwhelm her."

Wow.

Ouch.

Now, my mom has had lots of health problems and I was already trying to figure out an alternative.  (She had called me up an announced she was coming out to help a week or so prior).  I have steep stairs in my house and my mom has knee problems as well as Lupus, and stress makes her Lupus flare up.  I didn't think this was necessarily a good combination.

Tracking Paperwork for Special Needs Kids--My Autism Binder

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• Hello!
• With six children, four of whom are on the autism spectrum and my toddler receiving services for speech and sensory issues, I need to be an organized mom.  Admittedly, some areas of my life are better organized than others.  Today I want to address something I've never really seen talked about--the sheer amounts of paperwork that comes with a special needs child and how to organize it.
• Whether you are like me with one or more kids with special needs and you've been doing this for a while, or a mother with a newly diagnosed child, you need a way to keep track of the appointments, progress reports, evaluations and 504, IEP and IFSP paperwork.  If you have a newly diagnosed child, I want to especially welcome you.  Take a deep breath and know that it will be okay because YOU ARE NOT ALONE.  You need to know this because I made so many missteps when we were first dealing with a new diagnosis.  The biggest one was not reaching out and sharing with others.

Success and Failure-Whirlwind and High School

So we have some success, and a failure.

Whirlwind did NOT get into the performing arts high school Firstborn attends.

I'm actually kind of grateful.

It's like pulling teeth to get him to practice.  He spends most of his time fighting me on it, walking away and just getting distracted.  Twenty minutes of practicing often turns into an hour or more because he interrupts his own playing.  (If he'd just buckle down and get it done, he would be done so much faster).  I can only imagine what agony next year would be if we had to fight to get him to practice to keep his grades up. 

Whirlwind DID get into the STEM magnet program.  I have high hopes for him here.  I've met with the counselor there and we attended an orientation meeting of sorts.  He's pretty excited about this new venture and so am I. 

Getting Whirlwind Ready for High School

In our school district, we have magnet programs.  Firstborn goes to a great school geared towards the arts.  He is getting top notch instruction in instrumental playing.  Whirlwind hates to practice, yet he has decided to apply to this school because he likes what his brother says about the students and the atmosphere.

In the meantime, another high school has a great STEM program (Science, Technology, Engineering and Math).  Whirlwind says he wants to be an engineer someday.  I think this is the better path for him. We're encouraging him to apply to this program.

We should know something about both schools by April.  I'll post the results.  

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.  

How Do You Guide Your Child Who Sabotaged His Brother's Scout Efforts?

Remember last week when I posted that Whirlwind was complaining about going on the scout camp out?  And that I mentioned it was an important camp out for both boys? 

Whirlwind sabotaged his brother.  I just don't know if it was intentional or not.

One of the final requirements for Lawboy to receive his Second Class rank was to go on a five mile hike using his compass and map along the way.  The troop got about a mile and a half into the hike when Whirlwind refused to go any further.  Another boy started complaining too and in the end they turned around.  (The troop did not have four leaders so two leaders could return the boys to safety and the other two keep the rest of the troop going).  The troop only hiked three of the five miles. 

When I talked to him about it, Whirlwind kept telling me he'd already passed off that requirement. 

I'm having a hard time discerning whether or not he was really that focused on his own scout goals and not anyone else's, or if it was intentional sabotage of his brother and he's taking a tact he thinks will spare him consequences.  (I don't think he likes the idea of his brother being closer to First Class than he is). 

I think that is one of the hardest parts of being a mom to an ASD kid (at least one of my ASD kids).  There are somethings I know he (Whirlwind) genuinely doesn't get.  Other times (because of things he's shown me he can accomplish) I think I'm getting played.  Usually I can tell the difference, but when we have somewhat unusual or new situations it is harder to figure out. 

I pray a lot for guidance as a mother.  I don't know how I could do it if the Lord didn't grant me inspiration from time to time.  I pray for wisdom and patience.  I know the Lord knows my children even better than I do, and He knows how I can best help them. 

I know the Lord answers my prayers.  On more than one occasion I've relayed a strategy or analogy I was inspired to try with one of my kids--only to have a counselor/therapist/professional tell me I was using a known technique to professionals without my knowing it was an "approved" technique.  I'm not saying this to toot my own horn about my instincts, but to give credit to my Father in Heaven who has helped me do these good things for my children.  By myself I wouldn't know how to do what I do.  With the Lord's help I can do anything.

So now my kids are home and I am lacking Solomon's wisdom.  I am going to be praying about how to handle this situation, because on my own I think I might just screw it up.

Trust in the Lord my friends, Trust in the Lord.

Trying to Motivate my ADHD, Aspergers, & Sometimes ODD Teenage Boy

My boys belong to a church-sponsored Boy Scouts of America troop.  It has been a good experience for them.  We have an upcoming camp out, and once again Whirlwind is declaring loudly he doesn't want to go.  He does this just about every scout camp out.  Somehow we convince him to go and often he comes home having had a good time.  He complains when we go the the local state park to meet up with friends from church.  I drag him there and then he never wants to leave.

I try to gently remind him that he said and did the same thing the last time we _____, and he still had a good time.  Sometimes I resort to all-out bribery/mild coercion (no electronic gadgets if he chooses to stay home).  Sometimes I lose my temper and tell him it doesn't matter if he doesn't want to go--we're going.

He's a teenager now, so everything has become "stupid" to him.  I want to roll my eyes right back at him and tell him he's being childish, but I know that will just cause problems.  (Did I ever give my own parents attitude?  I do remember being a bit obnoxious when I was in eighth grade, but I don't remember it being this bad).  He's a very different personality than Firstborn, so I'm having to develop new parenting skills.  I'm looking for ways to motivate him and not have the drama every time we need to engage him in an activity.

This camp out is an important one. Both he and his brother need to accomplish several things on it so they can earn their First Class rank.  He is more vocal than ever that he doesn't want to go, but he really needs to.  I hope it goes well.

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.

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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.

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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. 

Acroboy Has Graduated from Speech Therapy

Right as school is ending I received a letter from the speech therapist at the elementary school.  It stated that Acroboy has met all of his speech goals and services would be ending. 

I'm not sure how to feel about this. 

I'm pleased that he seems to have met all of his goals, but will he remember everything he needs once school starts again in the fall?  Will we have other issues that will become more prevalent? 

I think his teacher is nervous too. 

I did receive one piece of good news for us though.  The incoming kindergarten class is not large enough to warrant three teachers, so his teacher will be advancing to first grade with her students.  I think most of the kids in the class are excited (all of them opted to stay with her), but I am especially looking forward to this move since she knows Acroboy so well and we already have good communication and reinforcement between the two of us. 

We'll see what the summer and fall bring. 

Frustrations and Gratitude

We had a 504 meeting for Acroboy.  Well, I thought it was going to be a 504 meeting for Acroboy.

Acroboy's teacher has been giving him some accommodations to help him in class.  He gets extra reminders, visual cues, he sits close to her on the rug and so forth.  His reading skills have blossomed under her care and we have seen him make some progress socially.

He has a dual diagnosis of Autism Spectrum and ADHD, which should qualify him for an IEP.  I've met with the district twice about an IEP for him.  Both times I was told he wasn't behind enough for a perceived academic impact on him.  I also had him evaluated for speech at an early age since he didn't really talk until about his second birthday.  By the time we got the evaluation done he was speaking enough that he didn't qualify for services.  I had worked with him on colors, numbers, shapes, etc. and so there was little for outside resources to do.  He just wasn't far enough behind to warrant services. 

********

This time I wrote a letter stating that though he has dual diagnoses that both qualify him for an IEP, I would settle for a 504 to get the accommodations he is currently receiving written down on paper.  --Firstborn had "unofficial accommodations" and when we met up with a teacher who was less than understanding and willing to work with us, his grades took a nosedive.  I didn't want the same thing to happen to Acroboy. 

The school principal, school counselor, speech therapist, and teacher were all there.  The occupational therapist who examined Acroboy's handwriting was not.  The developmental pediatrician we saw at our favorite Autism medical center also diagnosed Acroboy with Hypotonia (or low muscle tone) in his hands.  Acroboy has terrible handwriting, though the occupational therapist said (via phone call to me at a different time) the handwriting is not out of line with what you would expect in a kindergartner.  

We went over Acroboy's strengths and weaknesses.  His teacher discussed how she had been working with Acroboy on a number of behaviors, social skills and things.  The school speech therapist talked about some of his struggles with social skills as well.  We all know he has had a hard time adjusting to kindergarten.  However, because he has learned to read above grade level and he can figure out times tables now that I have explained the concept to him (4x2 means four groups of two--and he figures out the answer eight), he does not meet their criteria for an educational impact.

They were quick to tell me that he still qualifies for and will receive speech help, but he does not get a 504.

I'm incredibly grateful that Acroboy (and really all of my boys) are doing so well academically.  I have high hopes that they will be able to be fully independent and contributing members of society.  I know many other families who are not so lucky.  Words can't really express how lucky I feel. 

I am frustrated and more than a little concerned that by not writing these accommodations down on paper I will encounter the same problems we did with Firstborn. 

The school officials also told me if we see Acroboy's grades and academic performance go down we can revisit the idea of a 504.  I asked that if I can't get a 504 for Acroboy, when they are placing him in a class next year, could they please place him in a class with a patient and understanding teacher who will work with him--even without the 504.  They assured me they will. 

Meanwhile the occupational therapist sent home a pencil grip and some exercises we can do at home to strengthen Acroboy's hands and improve his handwriting.  

I'm hoping and praying for the best. 

Sprinting vs. Marathons: Living in a World of Quick Fixes with Long-term Challenges

It seems to me we are a society of quick fixes.  Everywhere you turn in media there are ads for countless medical pills.  There are pills and drugs and creams, for dry mouth, dry eyes, insomnia, depression, acne, irritable bowel syndrome, restless leg syndrome, ed, yeast infections, weight loss, etc.  You can make your eyelashes appear longer and fuller with hundreds of mascaras, or you can products that will permanently affect them. (And oh, by the way, it may actually change your eye color.  You have to read the fine print).  

We buy magazines with covers that scream, "Ten steps to a better you!",  "50 ways to declutter your home", "101 organizing ideas", "30 things you should do with your kids", "Seven great weight-loss recipes".  We devour lists and tips and quick fixes.  I'm pretty sure I'm not the only that wishes I could snap my fingers and my house would magically clean itself up--much like the nursery in Mary Poppins.  

I admit I am guilty of buying into some of these things.  I can't tell you how many organization books I've read.  I think subconsciously I keep hoping reading one more article will make me a more organized person.  I have spent more hours than I'd like to admit trolling Pinterest for recipes, meal planning, Autism ideas, and the like.  I've even written my own post on this blog about tips and ideas for navigating amusement parks with more than one ASD child, or how to capture the magic of a surprise Disney vacation when your kids don't exactly like surprises. 

Now don't get me wrong. I am grateful for the information and products out there that are truly helpful.  Three of my children have ADHD, and two of them are on medications that help them focus.  Before we tried the medicines, we went a more holistic approach cutting out sugars, gluten and casein.  We also cut out artificial dyes.  It worked when I could monitor my children's diet, but one little slip-up meant I had to deal with 45 minute long screaming tantrums.  I was exhausted and Whilrlwind would actively seek the things I was trying to keep out of his diet.  He would trade food at school, friends houses, etc.  It was a losing battle.  When we had his medication correct he was sweet loving, and easy to get along with because he could control his impulses and anger.

I've also found many useful tips and ideas that have made my life a bit easier in various ways.  Ideas for transitioning my kids to activities, freezer meals to try that included a pre-made grocery list, organizing and scheduling ideas that have made life run a little smoother and the like.

As good as all these things can be though, I have to remind myself that for better or worse, I am running a marathon here--not a 50 meter dash.

There are no ten easy steps to helping my children master motor skills like buttons or legible handwriting.  There isn't a sure-fire way to get my kids to respect personal space for others.  We have to practice reciprocal conversation skills, picking up body language and other things I had always taken for granted.  And, as much as I want to lose thirty pounds, it is not going to happen if I don't pay attention to what I eat and get exercise.  The quick fixes I've seen for weight loss have had their ramifications.  A former co-worker was very excited about Phenphen when it came out.  He would later discover he had damaged his heart with its use.

***

A couple of years ago I ran a 5k.  It was a goal I had, and I was so excited to keep going with my running.  However, that winter I sprained both my knee and my ankle when I was rushing across my kitchen floor and slipped on a mat.  My knee and ankle hurt for a long time, and I did not get back into running.  This year I have a goal to run another 5k in the fall.  As I train with the walk/run method, I find I "hit the wall".  I get to the point when I don't feel like I can physically run one more step before I have to walk.  I remember from before when I hit that wall and push through it--even one or two steps more, the wall would get pushed further and further back.  I also remember there even comes a point in running when you get a second wind and you are able to go further than you did before. 

I'm not there yet, but I'm working on it.

***

I would say I'm running a marathon in my life right now with my family, except it feels more like being in training. There are times we are running, but we hit our wall and don't think we can go one more step.  Sometimes we are metaphorically walking.  Moving forward at a snail's pace, but we are still moving forward.  It's the only thing I can do.  To not move forward would be to give up, and I just can't do that.

When I hit my wall or need to remember that this really is a long-distance run, there are a few things that really help me.  One is looking back and seeing/remembering just how far we have come.  Firstborn doesn't freak out at "crisis" situations anymore like he used to.  The kids have come from reading below grade level to reading above grade level.  Conversation skills are improving, Acroboy doesn't break down and cry anymore when a new food is presented to him, he is actually more willing to try new foods thanks to the food occupational therapy.  We've made huge strides, and in my moments of frustration I have to remember just how far we've come.

I also have to remember I am not running this race alone.  I have a running buddies/cheerleaders in my friends and family who support me.  My biggest supporters are my Heavenly Father and Savior.  Whenever I feel tired or discouraged I can turn to them through prayer, scripture study, service, contemplation, etc, and feel uplifted.  There have been many times in my life where I feel like they've carried me. 

This above all helps me move forward.  When I reach the end of this life and have to meet my Father in Heaven and Savior I want more than anything to be able to truthfully say:

I have fought a good ^afight, I have ^bfinished my course, I have kept the faith 2 Timothy 4:7

Remember when you are running today, it's not a sprint--it's a marathon and we're in it for the long haul.  If you need a little more inspiration, check out the video above or in this link.  We're all a little bit like Dayton and the Savior is our legs.  

Proud and Humble Mama

Today was a good day. It started off rocky, I had to run to a big box store to get black polo shirts for an upcoming concert for my boys. The three oldest had their solo and ensemble competitions today. Two of the boys needed to be there at 9:20 and though I kept watching my time on my watch, I hadn't counted on how long it would take to get through checkout. I kept calling home to keep them apprised of my progress, and to coach them on how ready they should be at that point.

Lawboy kept answering the phone and I don't know if he ever passed on my messages. My instructions before I left and on my phone calls were to shower, eat, take medications, have instruments packed and ready to go as well as have music. I called when I was about five minutes from home and instructed them to put their instruments in the van (I was in my husband's commuter car).

I got home about two minutes after we were supposed to be at the school (which takes about seven minutes to get to). They were still getting things together--despite the three "signpost" phone calls I had made. Whirlwind was still in his pajamas. I had planned on taking all three of them to the competition at the same time.

We finally got the two older ones out the door. I am not very proud to admit I was berating them for not following directions and running so late. A little voice inside my head told me I was not helping them be calm or prepare to perform at their best.  It was humbling.

I apologized to the boys for yelling.  I explained my reason for wanting to get them there early was to give them time to warm up and prepare and be calm.  I realized my yelling hadn't helped matters. I asked Firstborn to say a prayer because we had lost the influence of the Holy Spirit because of my yelling. He gave a beautiful prayer asking for the spirit to come back and to help them in their performances inasmuch as they had prepared to play their pieces. I think we all felt better after that, and that was proud mama moment number one.  He was showing maturity where I had not. 

I dropped the kids off and parked the car.  Just as I was coming in the school I saw Firstborn talking to his teacher.  His copy of his music had gone missing.  He was worried.  The teacher suggested he check his things again and retrace his steps back to the car.  Firstborn and I both said hurried prayers to find the music.  I ran to the car to check for his music, and then called home and had them check too.  The family and home and I came up with nothing. 

When I got back into the building, I could not find Firstborn. I found Lawboy who said Firstborn had been called back to play already. We checked with his teacher, but none of us had any idea whether or not he had found his missing music. Very quickly, Lawboy was called back to perform his piece.  I saw him off and headed home to get Whirlwind.

My sweet boys showed me generosity of spirit by being willing to forgive my crazy mama moments and berating I had done.  They were definitely more mature than I had been.  It is humbling when your child(ren) can show you how you should have behaved.  

When I arrived home, Whirlwind still had not showered. He was dressed, but not showered. I learned my lesson, and stayed calm.  I did make him shower and change his clothes into a white shirt and tie. His performance time was later, but I wanted to get him there with plenty of time to tune his instrument. It turns it out that was a good thing. And though Whirlwind kept whining and asking for his DS (which I did not give), I still kept my cool this time. He threatened to quit cello for the umpteenth time to which I calmly gave him options if he chose to quit.  I replied if he was choosing to quit we could either sell his cello, or he could pay me back for it if he wanted to keep it and not play it.  He loves his cello enough (though he hates to practice) that he calmed down.

In the end we got him there, he tuned his cello with the help of a teacher, and he performed. It was the first year of "competition" for Whirlwind and Lawboy, but the third for Firstborn. Whirlwind and Lawboy both got a rating of II.  This is really good for a first competition. We were expecting harder judging now that Firstborn is competing on a high school level, so we were absolutely thrilled when he came back with a I, which qualifies him to compete at state. He qualified last year too, but the state competition was held around the time Baby Girl was due.

At the end of the day, I am both proud of my boys and humbled by their actions.  They were quick to forgive and move on.  How often can I take a page from their book and not hold on to a grudge?  I try to not hold grudges, but I find that I will sometimes spend an hour or two in "righteous indignation" before I calm down.  They did it within less than an hour.

Something to think about.

I am so proud of my boys and all of their hard work!  Congratulations boys and thanks for being a good example to your mother. 

Trying to Create Some Order In My Life

I'm a pack rat. Income from a long line of pack rats. I have a difficult time letting go of things. Some times it is because of sentimental value, and sometimes it is because I think I might need it someday.

I read recently that scientist may have found a gene that is responsible for my hoarding behavior.

Even if there is a gene, I have the power to choose whether or not I keep things at all. 

At any rate, it means in my 40 some odd years of life I have accumulated a lot of stuff. Some of it is worthless, some of it is waiting to be passed down to the next child. Some of it should get passed on, some should get scrapbooked,and some should be thrown out or given away. 

The problem lies in the time it takes to go through and determine which is which. I'm not the type that can look at a whole box and just say "It's trash."  I have that compulsion to look at each item and assess value.  I've been watching lots of episodes of hoarders and it has made me realize these things about myself and given me motivation to purge and make decisions quickly about items I'm touching.

Additionally, I'm trying to be better at not even bringing things into my home unless I need them. I have put a moratorium on buying any new scrapbook supplies until I use up the ones I have. I'm trying to find a few minutes here and there where I can get through old projects and either get rid of them or finish them.

Raging outbursts and Calming the Storms

As I sit here nursing the baby, Whirlwind is in a raging outburst. He is yelling that I don't care about him. I won't help him, no one will help him and he hates this stupid family. He wishes he wasn't a part of our idiotic family.

I could go on, but sufficed to say, it's not very pleasant.

Lately I've been reading my scriptures in the mornings, and it has given me an added measure of peace during the day. I feel that when I start my day with my scripture reading and a prayer, I am more prepared for the day and that I can more readily listen to the promptings of the Holy Spirit. Right now I feel that I should let Whirlwind finish venting and then approach him when he is calmer. It is more than just experience or a gut feeling, but a calm knowledge this is what I should do.

I find with my children I am often sending up quick prayers or pleas for help in how to handle a situation, or what advice I might give or how to respond to something they tell me. I am grateful for the inspiration The Lord gives me though the Holy Ghost on their behalf. I hope I will always do my best to listen and obey.

Right now the following scriptures come to mind:

Mark 4:
37 And there arose a great storm of wind, and the waves beat into the ship, so that it was now full.
38 And he was in the hinder part of the ship, asleep on a pillow: and they awake him, and say unto him, Master, carest thou not that we perish?
39 And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm.
40 And he said unto them, Why are ye so fearful? how is it that ye have no faith?

While our lives, and at times Whirlwind's emotions, may turbulent, I find peace and comfort in our Savior who calms the tempests both temporal and spiritual.

May you too find peace and comfort this day.

Good Friends Are There For You

I am so thankful for good friends. My good friend, Monica, knew I hadn't been able to get the school district (a long story) to put Acroboy into their free preschool program. She also how concerned I was that he have a chance to adjust going to school, and that budget constraints precluded many private schools.

Monica's own daughters attend an early education training program at our high school. Students have to apply and be accepted into the program which works with young children 3-5 years in age.  The preschool class size is limited and the whole program is under the supervision of a wonderful teacher. The students spend weeks learning before they are ever put in charge of children.  Then, each Friday (when there is no preschool), they evaluate the week.  The cost is nominal. 

Monica talked to the teacher in charge about getting Acroboy into the program just once a week so he could have exposure to sitting in a classroom, learning and using routines, and getting along with other kids.

The teacher called me and she had some concerns too, but in the end we decided to try it out for a few weeks.

Overall it went well.  Things went well enough that Acroboy went Mondays and Wednesdays, then at the end, he went every day.

We hit a few snags with him learning the rules, learning about people's personal space (that one is still an issue), and learning about what not to say in class (it involves quoting dialog from a video game out-of-context).  We had a few days when there were tears because he didn't want to go to school.  I would sit in my car in the parking lot and wait for them to come get me if it became too much.  In the end he would come out smiling and happy and having totally forgotten he had not wanted to be at school. 

It was a good experience and I think a much needed one to prepare him for the transition to kindergarten.  I can't thank Monica enough for her help.  I can only imagine what kindergarten would be like if we were fighting all of these battles then, and not now. 

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.

Family Happenings

This pregnancy has been rough.  I've been so incredibly sick. But I at the same time I am so grateful to be in this position. I really had given up the idea that we would have any more kids. I didn't think it was in the Lord's plan for us. Because I thought we were done having kids and I gave away so much baby gear! My friend, Christy, who was the recipient of most of the baby gear gave or is going to give it back. When I am done with it, it will go right back to her. That part is a huge relief at least.

In regards to being sick, I've had to get acupuncture treatments for nausea and STILL wear my sea bands.  Were it not for the fact I've learned that a little bit of protein in my belly helps (I nibble on hard boiled eggs and turkey meat), and that carbohydrates tend to make me sicker, and blessings from the Lord, I probably would have ended up having another IV from getting dehydrated and not keeping things down like I did with Firstborn.  I tried the anti-nausea medication they said I could take, but I had a reaction to it.  

Based upon prior experience I am pretty sure I am having a boy.  I am just hoping that if it is a boy, and he too is on the autism spectrum, the Lord will grant me strength and wisdom to be the best parent I can be.  

Words really can't express how shocked I was at being pregnant.  I am so grateful though that we have made it further than we did with the last three pregnancies.  I've done a lot of soul searching about the answer I got, and I can see a purpose for it now.  The answer I got was that I had done all I needed to for my family and that I should focus on helping my kids right now.  I interpreted that as I had given birth to all the children I needed to. Perhaps I that is how I was supposed to interpret my answer.  Since then though, I have been focusing more on what my kids need.  

I have also gone through the difficult process of aligning my heart to the Lord's will for me.  I am sure this will not be the only time I ever have to align my will with what Heavenly Father and our Savior want for me, but I have grown so much closer to them.  Staying close to our Father in Heaven and Savior is a constant process I know. You really have to keep moving forward because doing nothing sends you backwards.  

Katie (who is now my first counselor), and Julie (my second counselor) have been a tremendous help. I was so sick we ended up telling them and the Bishop in addition to our parents because I needed the extra help. 

I was somewhat apprehensive at our 12 week visit. this was the visit where in the last two pregnancies things had gone wrong. First we had our 12 week ultrasound and we saw a strong heartbeat, and I could even tell the nuchial folds seemed thinner than the baby we lost. Then it was time for the doctor to see me after the ultrasound. When he came in a gave us a HUGE smile. Everything looked great at this point. I felt so relieved-- we made it to a crucial point.

We still didn't want to tell the world at large, but we felt lighter and a bit more optimistic. Thankfully as well, my morning sickness ebbed just in time for that family vacation I planned for in May.  

We had a good time--so much so that our most recent trip has earned A couple of separate posts.  I have had to put off things for my other children because I was so sick with the one I am carrying now.  One of those is pressing for C5-Trainboy--though I think Acroboy is more appropriate now--getting him into preschool.  We're almost to Christmas and he still isn't in a program yet. We were told we were on the wait list. There have been days when it was all I could do to make breakfast and lunch for the two of us, so I had no problem not having to run him to school each day.

Acroboy is smart, so it is not the academic portion I am worried about. It's getting him to adjust going to school each day. It is getting him used to a regular classroom setting and interacting with large groups of children. He goes to the children's class each Sunday, but that isn't a substitute for a weekday routine. His sister got a call just before Winter break and would she like to join the preschool. I had been hoping that would be the case again, but not so far.  I have another meeting with the district after the holidays to hopefully get him an IEP. I am hoping they'll put him in one of their preschool programs then.  Private preschool really isn't an option for us. 

We took him back to the medical institute's center for autism.  He had another ADOS and other evaluations.  This time he has a diagnosis of not only PDD-NOS, but ADHD. It's really not surprising given how hyper he is all of the time.  I've been seeing him act more and more like Whirlwind all of the time. He has food and texture issues though, so medication is not an option in my mind.  We will see what meeting with the district brings.