Firstborn's Journey to Diagnosis Part One

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I wish I knew then what I know now.

More of Firstborn's story on another day.

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.

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.

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.

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

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

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


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

*******

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

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

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

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

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

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

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

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

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



See the crowds?

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

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

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

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

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

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

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

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

I should have kept it.

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Verdict is In

I guess "verdict" isn't quite the right word, but I couldn't think of anything catchier.

So we got the test results back.  Baby Girl is allergic to milk.

I knew my other children were senstive to milk--it gave them all diahrhea until they were about 2 1/2 years old.  At this point I don't know if it was a milk allergy, or just a sensitivity.  In this case I do know.   

I'm still nursing Baby Girl, so I plan on cutting out dairy compltely from my diet.  I am already using rice milk for my cereal, but I will go back to non-dairy ice cream and cut out all cheese. I am hoping by doing so we'll be able to figure out if Baby Girl's rash is really due to the oats or due to the milk I've been ingesting in small quantities.  

Funnily enough, oats and barley were not tested, though wheat was.  She is not allergic to wheat, though a wheat allergy is not the same as celiacs disease.    Our doctor wants to send us to a pediatric gastroenterologist to look at her and run the necessary blood test.  The fact Baby Girl has not gained weight is reason enough to have her examined.

I will post more on her progress as we move forward.  I'm still paying attention to her sensory issues.  We got into a study looking at siblings at our "favorite Autism medical center".  I just want to do what I can for my baby to grow and develop the best she can. 

April is Autism Awareness Month

Seven years ago my only exposure to Autism was meeting Kim Peek, the gentleman who inspired the movie, "Rain Man". 

Or so I thought.

Little did I know that my sweet little eight-year-old boy who had a difficult time interacting with more than one child his age was on the Autism Spectrum.  Little did I know that he wasn't just a picky eater.  Little did I know that not only did Autism affect my oldest, but it also was affecting my two other sweet, and very hyperactive little boys.

Fast-forward to today.  I now know four of my children are affected with Autism. 

They have big hearts and good souls. They have trouble in social situations, but they are trying. I have high expectations for them because I believe they can soar. They do not deserve to be mocked, bullied, shunned or vilified. 

Unfortunately we've had experience in all of those. 

One in 88 children is affected with autism. One in 54 boys is affected.  Four of mine are. If your children are fine, be grateful and please give me and my children some patience. We are doing the best we can.

I am momma bear and I am going to fight for my kids and do everything I can to prepare them to face the world. I will be tough when it is called for, and gentle when they need it.

You can help by trying to understand.  You can help by spreading the word.  You can help by asking questions, and opening dialog.  My boys might accidentally offend you.  Let's talk about it and how we might fix the problem. If I don't know about it, I can't fix it.  You can help by being aware.

Thank you. 

Follow-up on Baby Girl

Baby Girl had her nine month well visit. Overall the pediatrician is happy with the progress she has been making. She seems to have a rash/ dry skin/ eczema. We are not entirely clear on what is causing it. I am going to go back to the basics with her diet and see if we can figure out what we need to do food wise for her. She is always scratching at the back of her neck. She hates bibs on her. I don't know if that is a result of her skin condition or a sensory issue like her brothers. She also cries when anyone chuckles or laughs when she is tired. Maybe I am hyper-sensitive to the issue because of the other boys. Our pediatrician and I talked and she said we would just have to watch her carefully for now. It's too early to tell.

We may try and get involved in some studies at our favorite medical center to monitor her development. Other than that, it is a bit of a waiting game. So we wait.  

Food therapy

We've started "food therapy" for Acroboy. Basically I make the nearly two hour drive every week to meet with the ocupational therapist who works with food. We do a food practice to help Acroboy get over his food aversions.

What aversions you might say? Gagging on foods he doesn't want to swallow, crying and melting down just even seeing certain foods. Limited diet that consists of pizza, pot stickers, Cinnamon Toast Crunch, pb&J sandwiches on bread (it has to be the Goober stuff grape flavor), only certain kinds of chicken nuggets,etc. Having issues with textures of foods or the way they are presented. He'll eat scrambled eggs, and but not the yolk in a sunny side or hard boiled egg. He'd eat french fries, but not potato wedges.

His therapist was great. She gave me so many things to work on with him. It's my responsibility to work with him at home to try new foods. We also don't refer to thefoods by name, but by attribute. So we try the yellow lines (Pirate Booty), then yellow circles (bananas), then blue circles (blueberries). Initially we link foods by at least one common attribute.

Acroboy won't touch a lot of the foods right now, but he thought today was fun enough he didn't cry so much when we had green circles (Cucumber slices). He wanted them as far away as possible, and he whined a little, but he didn't cry.

The therapist says it takes at least ten exposures of trying a food before you can really know if you like it or not. The goal for us and Acroboy is to keep exposing him to foods over and over and to slowly increase contact with those foods.

Let's hope this works!

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.