Let's Add Another Allergy to the Mix

Okay.  So the doctor visit was mostly helpful.  Here's what I was told.  The rash (because of it's stages), looks like chicken pox--except it's not anywhere on her trunk.  It could be hand, foot and mouth--except it's not anywhere in her mouth.  We are left with being mostly positive it is an allergic reaction to her penicillin based antibiotic.

The plan:  Treat her with a tiny dosage of Benadryl several times a day for the next two days.  Change antibiotics immediately to take care of the strep throat.  Watch for any worsening of the rash or of other symptoms.

So now we make the changes and wait and see.  We have a couple of appointments I'll need to rearrange since I'm going to keep her at home just to be on the safe side. The most frustrating part of this is just not knowing.

Allergic Reaction to Penicillin?

My baby has come down with step throat.  It's the first time she's had it.  She had an ear infection once before and had amoxicillin for it.  She's had three doses of the antibiotic for the strep throat.  We were sitting in church today and as we were sitting there we notice angry red spots on her legs.  We thought maybe it was a reaction to the cow's milk we gave her.  (The pediatric allergist wanted us to try cow's milk again once she hit 18 months).  The longer we sat there, the more spots appeared.  Literally in the course of one hour she was covered in spots. 

As soon as we realized more and more spots were appearing, I pulled her out of church.  I called the doctor immediately and described what I saw.  Angry red spots that were on her arms legs and a tiny bit on her face and now appearing on hands and feet. No spots on her trunk.  The doctor said it sounded like an allergic reaction and to bring her in the next morning.  She said to discontinue the use of the antibiotic until she was seen, but if the rash got worse or affected breathing, take her to the ER.

I watched her carefully and no more spots appeared.  Breathing was normal too.  We've put her to bed and I'm anxious to find out if my baby (in addition to a dairy allergy) has an allergy to antibiotics too. 

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.  

Autism Hat Tutorial

 

For a while now I've been contemplating making something that would possibly make my life a little easier.  I've had enough meltdowns on outings with my ASD kids to know I wanted to do something to indicate we are an Autism family.  I also wanted it to be an item I could keep in my car or diaper bag and pull out if we had an unplanned excursion.  (Those are the kind that prompt the most meltdowns).

There are great t-shirts out there, but those would be wearable once and then need to be washed.  I would also have to get it back into the bag/car after it was washed. (Which might be a challenge since I've forgotten to restock diapers for the baby from time to time).  I also wanted to have whatever I made available for daily use on our vacation to Disney World. 

I thought about creating vests out of lightweight material, and I may still do that, but another crafter on the fabric store suggested hats to me.  This made total sense to me since I have to have all the kids pack hats for the Florida sun anyway.  I checked out the store and they both painters caps and plain baseball caps.

I found this awesome puzzle piece flannel in the fabric store.  Multi-colored puzzle pieces are a symbol for Autism, so this was perfect for my needs.

I used my silhouette cameo with a fabric blade and iron-on interfacing.  Flannel is thicker, so I found the canvas setting worked well.  I used a downloaded Mickey head and turned it into a cut file using my silhouette software.  I cut three from the fabric. You can't really see two cut Mickeys with this photo, but they were there. 

To iron on the Mickey head, I needed to support the inside of the ball cap. I first used a wadded up pair of jeans I was repairing.  It didn't give enough support.  Then I used a folded towel which worked much better. 

I looked high and low to find the right scale letters for my hats.  I also bought a fabric paint pen.  The fabric paint pen didn't give me the look I wanted, and I was lucky enough to find what I needed at Hobby Lobby.  They are JOY brand Baby Monogram Letters and Numbers.  You can find them here. 

I laid out the letters first on the hat (which was a bit tricky), then figuring out where the T needed to be more or less centered, I started ironing down letters.  I found it easiest to keep working in one direction with the letters since the iron had heated up the fabric and made the glue on the letters start to warm up a little.  

By the way, the dark spot you see above the Mickey head in the picture below?  It was wet there where I had wiped away the fabric paint.  The fabric paint really didn't work as well, though I don't have a picture to prove it to you.

The finished blue cap. 

For the record, the painters cap really didn't have enough room to use any letters, so I left it plain.

The white baseball cap with a bit more embellishment.  

 

I was overall pleased with the end result.  I had the kids wear the caps to the Disney and instead of glares, I got smiles and patience.  Acroboy wore his cap and sat front and center at Turtle Talk With Crush and he was chosen to talk to Crush.  (Boy!  Was he excited!).  I'm not sure if it was because of the hat or where he had chosen to sit, but he was thrilled none-the-less.

I think the hats also were a blessing when he got himself lost for a few minutes.  He found a parent with kids (like we've trained the kids to do), and they were talking to a Cast Member when we located him.  The hat let the Cast Member and kind parent know we had some special needs going on. 

The hats of course got dirty, and we lost one of the letters I hadn't ironed down enough.  When we got home I washed them in a sweater bag (the mesh kind that sometimes they hold nylons and other things too).  I figured if any more letters came off in the wash, they would end up in the bag.

See the clean, but damaged hat?

I then ironed the letters back on to the hat, and they look as good as new!

Race and Racing Heart

This last spring my sister challenged me to run a half marathon with her in the fall.  It was 19 weeks away at the time, and I began a couch to half marathon program that left little wiggle room.  I started training and things went well enough at first, but then I had a couple of days when because of the baby waking early (I was still nursing) or something or other the other kids needed in the middle of the night, I wasn't able to get out before the heat of the day kicked in.  I was convinced it was a conspiracy of my family to keep me from running since things only seemed to happen on training days.

My training really fell off the mark, so I settled for the idea that I would run the 10k instead of half.  I kept training as much as I could, but I admittedly lost steam. 

I also ran into an issue when I trained in strong heat and humidity.  My heart would do a weird tap dance and it would cause my breath to be taken away.

I went to my primary care , and she referred me to a cardiologist.  I had several heart tests done and even wore a Holter vest for 24 hours.  Nothing turned up and I proceeded to get ready for my race.  Of course the day after I turned in the monitor was when my heart did its tap dance.

I happened to mention the heart/breath thing to my allergist and he told me he thought it sounded like exercise-induced bronchial spasms.  He prescribed me an inhaler to try ten minutes before my runs to see if it would make a difference.  It seemed to help.

As much as I had done, I was unprepared.  I hadn't trained much with hills, and the course had been changed last minute to a hillier one.  I finished it though.  It was one of the hardest things I've ever done.  I think I pulled something in my legs, since I feel weak even claiming stairs at this point.  My awesome sister who has run half marathons, stayed with me the whole time.  She had a pouch in the back of her shirt where we kept my inhaler.  It was a good thing we kept it.  I had an asthma attack in the middle of the race and needed it.  The hills made it harder than I thought it would, but I finished!  Me the girl who had to pretend she was running for her life to get a decent grade in gym (let me dance for hours instead any day), finished a 10k race!  

Still recovering for the race, but I'm really happy I did it.  A couple of years ago I didn't know if I could run three miles.  Now I've run a six mile race.  My sister wants us to run the Disney Princess Half Marathon in a year or two.  Thankfully I know Orlando, and it's pretty darn flat.  New Goal to look forward to!

Torn

Torn

That's how I feel.  Torn. 

Baby Girl was evaluated in speech, gross motor and fine motor skills and in sensory/tactile sensitivities.  She qualifies for services.

She had her first evaluation with the case manager a couple of weeks ago.  We schedule another evaluation and she offered to have all them come at once.  My first reaction was, "That will overwhelm her."   I wanted to protect my baby from that.  I quickly realized that Baby Girl being overwhelmed would probably actually be a good thing for them to see.  We scheduled the evaluation.

She was, as I predicted, overwhelmed.  She shut down and turned into herself.  She closed her eyes against them several times over a short period of time.  She wouldn't complete tasks.  It was only when she had the safety net of her blanket over her head that she began to cooperate with them. 

She has a 25% speech delay.  Most of that is in receptive speech skills.  She came out as having the skills of a 12 month old.  IE--she hasn't made any progress despite our efforts. 

The occupational therapist saw a lot of the same behaviors I'm concerned with and is anxious to start working with her to see if we can help her learn to cope and deal with things in a productive manner. 

I'm relieved, happy, sad and so many emotions all at the same time.  I'm sad that my fears have been confirmed, but I am happy we've caught these things early and she can get the help she needs.  I'm relieved I will be getting support.  I've been fighting for my kids for so long I feel like I'm in a raging war and I've just received a battalion of fresh reinforcements.  I honestly get teary just thinking about it.  I'm grateful for those reinforcements. 

I am anguished for my little girl and what this might mean for her future.  It won't change who she is, but it means things will be that much tougher for her.  I have to prepare her to face the world.

I'm torn.

Allergies for the Older Kids

So I was thinking about Baby Girl's milk allergy and how it affects the skin on her legs (they always feel rough).  Acroboy has similar feeling skin on his legs.  I decided to take his older brother and him into the allergist to see if they too had milk allergies.  Surprise!  No allergies of any sort for Acroboy.  (Not even the oats we have been avoiding for years).  The allergist said Acroboy must have outgrown it.

I was expecting Whirlwind to have a dairy allergy because of some other problems he faces.  Nope!  Tomatoes though.  He is allergic to tomatoes--which makes sense to me because I've noticed for a long time how much more hyper he becomes after eating a tomato product like pizza or spaghetti sauce.  He is not happy about the tomato allergy.

We eat a lot of tomatoes in our diet (tacos, taco soup, spaghetti, lasagna --pretty much any Italian food, Indian food, sandwiches, etc).  I am going to have to make an effort to bring in more tomato free dishes for this boy. 

Response to Canadian Neighbors

You may have heard about the mom of an ASD boy, Max, who about a month ago received an anonymous and extremely hateful letter.

I was pretty shocked when I first read about it.  I was also upset, a bit angry and dismayed that someone could write something so cruel.  It also reminded me of how far we have to go in creating awareness and understanding. 

As I thought about this, my anger turned to pity.  Don't get me wrong, I don't condone the letter writer's actions, but I feel pity for her that her ignorance and fear is standing in the way of her getting to know and learn from some amazing people.  I feel sorry for her children who, if they are indeed terrified of Max, learned this attitude from their mother.  I'm sorry that their mother is teaching hate and fear instead of patience and kindness.

I am also sorry to say that while I haven't received a nasty letter telling me to euthanize my children, we have had a few run ins of our own with ignorance. 

My kids are a HUGE blessing to me.  We definitely have our struggles.  (Motivation and controlling  impulses are just two).  My kids have taught me to look below the surface though, because they are so much more than their impulsive behaviors, stimming, and inabilities to pick up on social situations.  They are more than their social gaffes.  My kids have big hearts.  They want to do good things.  They have goals and dreams and they have triumphs and disappointments and tender feelings.

My kids have suffered the indignity of getting so excited some neighborhood boys were inviting them to play basketball, only to get there and have the boys mock and tease them for their inability to catch a basketball pass.  The neighbor boys repeatedly threw the ball at my boys and laughed as it hit them and as my boys got more and more upset.  This happened repeatedly until I realized what was going on and I stepped in.

My boys have been excited to have cousins come to our side of the country, only to be told they wouldn't actually see their cousins that much.  I didn't have the heart to tell them that their female cousins don't feel comfortable around them due to a misunderstanding from the prior year.  (The boys hugged their cousins a few seconds longer than the cousins were comfortable with and the boys didn't pick up on it.  Even though it was a somewhat innocent, the "damage" was done).  We've made huge strides with my family since then, but the "non-visit" proves we still have a long way to go.

We've also recently have had family friends stop talking to us after they were in town and we met up for a day outing.  Acroboy and Whirlwind were having particularly hard time of it, and while I haven't be defriended on Facebook, they haven't responded to any messages from me, and their travel photo album left out all traces of our outing.

I've had stares at restaurants and in lines and glares.  I've had people tell me I need to control my screaming five year old better while I'm trying juggle an also screaming newborn.  I smile politely and explain we are an Autism family, and inside I'm thinking, "Thanks for your concern and for your non-existent offer to help the newborn while I deal with the five-year-old."  At the one place we caught a break, Disney World, we got glares from neurotypical families because we used a pass that allowed my children to wait in a shorter line.  Would they have really rather witnessed a complete sensory meltdown?  Even that small advantage to my kids is going away.

*******

Families like mine and Max's do not think we deserve special treatment.  We are asking for courtesy and kindness and an opportunity for our kids to grow and soar.  We hope our kids will become independent with jobs and that they marry and have the joy of a family.  We hope if there is a problem with something our child(ren), that someone will let us know and we can address it.  I can't fix the problem if I don't know there is a problem.

*******
I've since read Max's mother's response here.  Despite the hurtful letter, she has pretty much expressed the same sentiments as mine (only more eloquently).  She is polite and civil and reminds us all that we ought to be helping one another.

I hope they find the woman who wrote the letter.  I don't hope this so she has to face criminal charges of any kind. I hope this so that she can sit down face to face with Karla or other moms of ASD kids and she can learn to be unafraid.  I want her to have the opportunity to ask questions, to learn of her misconceptions and to get a glimpse into the very unique world of a child with Autism.  I want her to learn of the trials and the joys we face and how she might make things better for all of us all around. 

Honestly, when I think about it--I hope that is something that every neurotypical family does. The world would be a better place.

Am I dreaming too much? 

Are We Heading Down the Autism Road?

Back in July I wrote how I took BabyGirl into our favorite Autism medical center for her sibling study evaluation.  She excels at gross motor skills (we knew she did), but she is a bit more behind in expressive speech.  It's been over a month, and I've yet to see any real progress with her expressive speech.  (She demonstrates understanding or receptive language much more than she communicates).

We've decided that rather than wait until the 18 month evaluation, we're going to contact the Early Education program in our area and have her evaluated.  I know from our previous experience with Acroboy it can take a while to get the evaluations set up.  By the time I had Acroboy evaluated, he started talking A LOT.  He still had a verbal delay, but it wasn't significant enough to warrant him receiving services.

Baby Girl is non-verbal (Mama, Dada, baba, and uh-oh make up the sum of her vocabulary).  She is also showing more and more pickiness with foods and textures.  I've noticed her getting picky about the temperature of the water when we wash her hands too.  There is a limited range at which we wash, or she starts crying.

She is retreating more and more into herself when she gets overwhelmed.  It reminds me very much of how her oldest brother was.  Back then I thought it was just "cute".

We have the first of the evaluations set up in a couple of weeks.  I am not sure if I am jumping the gun.  Am I worrying unnecessarily?  Friends have regaled me with stories of family members who didn't talk much until they were 3 and then went on the lead "normal" lives.  What if I wait like I did with her brother, will she become verbal and then not qualify because she's not "enough" behind?  It's a tough conundrum for us.  In the end we decided we would start the process and see where it leads.  She may or may not qualify for services.  Either way I'll continue to work with her the best way I know how, and I'll know I've been doing all I can to give my baby the best start possible.

Return of GI Scope

Baby Girl had her second GI scope today.  She was a lot grumpier this time around and the grumpiness lasted longer than it did before.  The doctor showed me the pictures and things look good, but she'll send the biopsies off for evaluation so we know for sure.  I have a follow up appointment in a week or two. 

We've run out of her generic antacid, and the doctor wants to wait until she has the biopsy results before she gives us a new prescription. 

Her weight has added a few ounces each time she's seen the doctor recently, so I'm hopeful we're past the weight loss for her.  I'm in the process of weaning her.  I've been giving her more and more sippy cups of soy milk.  It's a bit emotional for me since she is my last baby, but now that I see how much better she is doing weight-wise it's a bit easier to let go.  (I even have guilt wondering if I'm the reason her weight gain has been poor). 

I have to admit I'm looking forward to adding dairy back into my diet.  I think I'll treat myself to a big old piece of cheesecake when she is done.

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.

Really? You felt the need to rap that?

I will be the first to admit that I don't listen to a lot of rap.  I find the misogynistic lyrics and foul language often heard in rap disturbing.  I don't like it when I hear cuss words in any music.

I can appreciate the ability to rhyme off the cuff as well as the ability to speak/sing lyrics at an incredibly fast pace and still be intelligible.  (I used to be involved in debate in my younger days.  "Spewing" as we called it was a highly valued skill).  

Forgive me, however,  if I am a little skeptical of a rapper's recent apology for using the line, "I'm aritistic, you n***** is autistic, retarded".

The lyrics in question are on a collaboration with another rapper.  Albums go through a lot of production.  It seems to me someone in the development chain could have and may have pointed out how offensive those lyrics would be found.  

It also seems likely that one or more persons (including the rappers) could have seen the lyric and let it through with the intention the rapper would apologize if there was any kind of uproar.  (Going with the idea that there is no such thing as bad publicity).  

I understand this rapper's album is competing against Kanye West's for the top of the charts.  The birth of Kanye's daughter has increased his visibility.  This apology has now put the competing rapper in the spotlight.  (On the chance this was done for publicity, I won't name the rapper in question).  It all seems a little convenient to me.  

I personally think his lyric is misguided and uneducated.  I really would like to think it came as an off the cuff rhyme and no one thought twice about it, but I do have my niggling doubts.  

It is a nice apology. I truly hope he has come to realize what some of the struggles we families with Autism face are.  Even more- it would be nice if he became an advocate for Autism awareness.   Even though Autism rates are climbing, too many people do not really understand Autism as evidenced by the whole situation.

I'm posting the apology below with the rapper's name concealed.  You be the judge.    

From Yahoo:

**** wrote that when he first heard a backlash from those who deal with the developmental disorder he immediately realized he went too far.

"I was instantly embarrassed that I would be ignorant enough say something so hurtful," **** wrote. "What makes the crime worse is that I should have known better."

**** goes on to write that he's inspired by those who reached out to him: "I have now read stories online from parents about their struggles and triumphs with raising an autistic child and I admire how incredibly strong you have to be to do so," he wrote. "It's touching. It also makes what I said even more embarrassing for me. I feel real shame."

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The Best App to Make a Busy Mom's Life Easier

(Updated Nov. 2014).  

First of all, let me start off by saying I have not received any solicitation or compensation to write this post.  I honestly just want to share the number one app that has made my life easier.  If I can help other busy moms save a little time and money by sharing, then I have done my job.  

So what one app has made my life as a mother of six easier?  Menu Planner. There are other menu planning apps out there, but this is the one I chose based upon reviews I read and the functions it offers.  

So how has this app made my life easier?  Menu planning and incorporating new recipes into our diet is a snap.  Grocery shopping is streamlined.  As we run out of items at home, I can throw them on the "list" and not lose the list since it is on my digital device.  (In my case it is my iPad).  I am notorious for losing small slips of paper. 

I have a large family of eight, and groceries can take up a large portion of my budget.  I learned a long time ago if I have a plan for our meals and go to the store with a list of all the ingredients I need for that plan, I save money in several ways.  I save money because I can plan our meals around weekly store specials.  I save money because I only buy what I need on my list.  Sticking to the list cuts down on impulse buying and duplicate buying. (How many times have you gone to the store, come home and realized you already had an ingredient?)  Using a list also cuts down on the likelihood you will forget an ingredient and have to make a second trip back.  

Menu planning is great, but finding the time to go through my recipes, find the meals, and record the ingredients needed was a challenge.  Even when I planned a week with most of our favorite recipes I would often find I had forgotten a key ingredient like green onions.  And with six kids I would often be interrupted when I was trying to plan.  If I left my cookbooks and recipes out, I would have a big mess to clean up later.  I honestly came to dread meal planning time.

This app changed all that.  It took a little bit of time to set up, but once I had my recipes in, all I need to do is find a few minutes here and there to pick the meals and fill the calendar.  Most of the time a few minutes here and there is all I get. 

 A filled calendar from several months ago.  Sometimes when a recipe makes less than what my family needs, I put it in the calendar multiple times to make sure I can double or triple a recipe.  

Being able to plan my meals has made a world of difference in my family.  And the best part is once I'm done putting in my meals, it automatically generates my grocery list.  

 

 My grocery list.  See the sections of the grocery store?  I love it!  It saves me running back and forth and missing ingredients in an aisle.  

If I find I have a spare ingredients at home I can look up recipes by the ingredients for her want to have a recipe calls for half of the bell pepper I can easily look for an second recipe use the other half of the bell pepper and therefore no waste.  I can also assign prices from several grocery stores as well as choose the section of the grocery I will find the item.  The list is categorized by grocery department.

You can see I've assigned cheese to "dairy" and the provided place for the store prices. 

 

 Some of the other recipes that call for shredded cheddar cheese.  I don't use many of them these days since Baby Girl is allergic to dairy, but you get the idea of how you can look for other recipes to use. 

There is a pantry function which keeps track of items on hand and you can set it up to populate the grocery list when it gets low from use.  

 

If I had a recipe that called for any of these items and I didn't have any on hand, it would show marked in the "list" column as well. 

The app also let the auto import recipes from the sites. My favorite is Taste of Home and Food Network. I used to be a subscriber to "Taste of Home," and now I have access to the recipes through Meal Planner. 

 

 The import recipe screen.  You click on the bookmark icon and it pulls up the compatible websites.  You can also type in the URL in the top bar and do a manual import from that site.  This is a great option for food blogs. 

I will warn you that occasionally when you auto-import a recipe it will put the size of an item you need in the ingredient name so instead of listing the zucchini as 1 medium, it will list medium zucchini, 1 instead.  It's not really a big deal, but I just like to have fewer items on my item list and use the quantity section to tell me size.  I just copy and paste the sizes to go into quantity section to solve the issue.  

You can input recipes of your own as well, and the more ingredients you enter, the easier it becomes to pick from the drop down menu.  You have the option of adding photos if you want.

 

There are several ways of entering in ingredients for a new recipe.  Typing by hand, copying and pasting from a list, or choosing from a drop down list of ingredients (once you've built it up).  

The recipes allow you to rate them on a scale of five stars.  When we try a new recipe, I asked the family their opinion and we rate it.  This lets me easily know whether or not it's a meal to make again.  

 

 This was a pretty popular meal. 

When I am looking at recipes, I can sort them by a number of methods including the last time I used them. When you choose that option, the "Never Been Used" recipes show up first.  It makes it easy to keep your meal rotation fresh and fun.  

 

Our "Never Used" recipes.  

Looking at the recipes from A to Z. 

Looking at the recipes through the favorites filter. 

I can look at my planning by a month week or daily view.  When I look at the overall picture I can balance out our meals and make sure that we don't have too much too much beef, chicken, fish or vegetarian meals in a row.  

 

Daily view of the meal planner. 

Meal planning is so much more fun since I got this app.  It is only $2.99 and it really has made an important "mom job" easier.  

Do you have other suggestions for apps that have made your life easier?  List them below in the comments.

Autism and Research

Over the last few years we've spent many, many hours at our favorite Autism medical center. We've had evaluations, therapy sessions, meetings with licensed clinical social workers and physicians of all sorts.  In the last year we began to participate in a study for siblings of ASD kids.  Baby Girl has been evaluated twice now for her development.

The first study she was ahead on some things (motor skills) and a bit behind in communication skills.  The most recent study she was ahead on motor skills again, but she is even further behind in regards to communications.  It's hard to say why she is behind.  Is there a true problem?  Does she not flex her communication skills beyond vocalization because there are so many people attending to her?  Am I too good at reading her body signals and anticipating her needs because she is my sixth child?  Is it that I am splitting attention between her and her other siblings so I just don't practice skills and sounds as much?  

I don't know the answers now, and I'm not sure when or if they will become apparent. I've been so focused on her lack of weight gain and getting her to clap and wave that I admit I've neglected verbally "labeling" items and trying to get Baby Girl to duplicate sounds.  

She also has more sensory issues with sound than I realized.  Up until now I thought she just hated her bath.  All you had to do was shut the bathroom door while the bath water was running and she would start crying.  Once in the tub she would cry and cry and try to stand up all the time.  She screamed when we had to wash her hair and rinse it with water.  One of the researchers suggested perhaps it was the sound of the water running that was scaring her.  

As an experiment for her last bath, I ran the water before I brought her into the bathroom, and gave her some new bath toys.  No tears were shed.  A breakthrough to be sure.  I'm not sure if it was the new toys or the already run bath, but we'll find out when I give her next bath with the water already run.  (I'll keep the new toys out of sight for a minute).  

Part of our struggle with Baby Girl's weight is she seems to have texture issues with some of the foods I offer her.  Toddler foods often have milk in them, so I have to work to find safe alternatives she can have.  Quite a few times I've given her a allergy safe "toddler" food and she just spits it out.  The most common denominator for why she spits the food out is texture.  I'll keep trying, because I know it is important to expose her to new things, but it worries me nonetheless.  

So is my baby heading towards being high functioning on the autism spectrum like her brothers?  I don't know.  We'll keep working with her and watching her.  I am grateful we are a part of this study so  professionals can keep a fairly close eye on her.  At our next visit we should have a better idea of how she is doing.  

In the mean time I'm going to ramp up my efforts to increase her communication skills.  If I recruit her older siblings perhaps it will benefit the whole family.  

Wish us luck.