Chasing birds

It's been a really long time since I last blogged. And entirely too many good things have happened since then. My kids grew bigger, Gabe learned to ride a bike, and Zane conquered his fear of water! 

Recently Zane has taken up the hobby of bird chasing. And I don't mean bird watching. I literally mean, he chases birds in the hopes to catch one. And I'm convinced that one day he will catch a bird. In all of his bird chasing, I have been reminded that life with autism is kind of like chasing birds. You keep chasing the hope that your child will talk normal, or learn like his peers. You chase the dream that he will have a best friend, or won't meltdown because the Lego set he really wanted was sold out and he can't verbally describe his disappointment. You chase a dream that society will accept his quirky behavior and won't judge
him or worse yet, make fun on him. And in all that chasing you realize that sometimes you can't catch that dream, but you still still have to chase it because one day, you will catch it. And that day will be a day to celebrate. 

It's summer time.

YAY!  Our summer plans....SWIMMING.  Gabe loves the pool.  I think he might have been a fish in a previous life.  Zane is not a huge fan of the pool.  He is starting to like it more, but cries the first 15 minutes you put him in the water. 

So, we survived our first year of public school.  I wish I could say it was a great adventure, but it pretty much sucked.  The last part of Gabe's school year was wonderful.  His autism support teacher helped him more in 3 months then what the IU did in the two years they were "offering" him services.  He has had two good IU experiences....his wonderful speech therapist he started with at 3 and Mrs. P his kindy teacher.  I'm just glad the year is over and am looking forward to a good year next fall!

We are coming up on the one year anniversary when Gabe stopped eating food.  My how time flies.  He is doing great in the eating department now.  He still coughs at times while he is eating, but nothing severe and he manages. He hasn't choked in at least a month.  Yay! 


We from this....                                                                        

To this.....a happy little 6 year old.  I am so proud of all of Gabe's hard work. 

The Magical Autism Shirt

Gabe is now in an autism support class and doing WONDERFUL!!!  I can't say enough good things about his teacher.  He is reading more, counting like crazy, and doing math!!  I never thought we would get past the behaviors in the class to learn.  She is a true teacher in every way.  That being said....Mrs. Wonderful Teacher sent home an order form for some blue autism awareness shirts.  Of course we ordered some for the entire family :) 

It's a great shirt in more ways then one.  It's cute, it's good quality, it shows our support for autism awareness, and it's MAGICAL.  No I'm not crazy.  It really is magical.  One day Gabe and I were at the store and he was begging for a toy.  Everyone that has children has been in this situation.  It's not fun.  Whining and crying.  It stinks.  Instead of allowing Gabe to buy yet another toy that would sit and collect dust I offered him juice or a lollipop.  He refused both and continued to whine about the toy.  During check out time I once again gave him the option and reminded him once I paid there would be nothing.  Well, it happened....I paid....and the whopper of a meltdown began.  EXCEPT....this time Gabe was wearing the magic blue shirt :)  Normally when my six year old acts like a two year old I get stared at, people offer parenting advice, some tell me he's a spoiled brat (I beg to differ since he didn't get the toy), some snot, and some even point!  Well....magic shirt takes that all away.  Suddenly people are empathetic and caring.   Not one person said a word....they all smiled and nodded in this understanding way.  We left the store....and I felt good.  Gabe of course was still screaming and crying.  But that's to be expected sometimes.  Long live the magic blue shirt!! 

CORN!!!

Zane had allergy testing done and he is allergic to ragweed, all tree pollens, and CORN!  So naturally I want my child to be free from ear infections and congestion so I start reading every label for every food he eats....and everything has CORN in it!!!!  Packaging, processing, fillers, derivatives, it's everywhere!  I don't know how to escape it.  They even powder our fresh fruits and veggies with a corn wax to keep them looking fresh.   Matt and I started off small and removed just corn proteins from his diet.  So that meant no maize, corn, corn flour, etc. that would still have it's proteins attached to it.  Zane still continues to have ear infections and congestion.  He also has terrible tummy pain and wakes during the middle of the night. :(  So we now have removed corn syrup and high fructose corn syrup.  We are also trying to avoid as many derivatives as possible.  Removing the derivatives seems the hardest.  Citric acid, dextrose, maltose, etc.  It's everywhere.  I can't imagine getting all of that out of his diet.  If I were a stay at home mom I could make everything from scratch, unfortunately I have to work. The plan...one little step at a time.  I am going to start working on some corn free recipes ....and go from there.

In the mean time I have found a few things that seem to be 100% corn free.  The best one of all is Chobani Yogurt.  Zane absolutely loves it. And it's safe for him to enjoy!

Sending Gabe into Battle (an old blog entry I never posted)

Every day I wake Gabe up at 0700 to get him ready for school.  And everyday when I kiss him goodbye I feel like I am sending him to the front lines.  He never complains about going to school, but he never says he likes it either.  Most days I sit and wonder what the school will do to ruin my sweet little boy.  Yep, he can throw a temper tantrum that's unbelievable, but most times it's autism related!  I can't imagine what he must feel like sitting there in that class with all those highly verbal children that seem to effortlessly move from one activity to the next.  How do I help the school understand how frustrated Gabe is with not understanding what is asked of him and not being able to communicate?  How do I explain sensory processing disorder?  How can someone who knows nothing of sensory disorders help him?  How can I expect his teacher to understand that the florescent lighting in the room could be a trigger to Gabe's behavior.  Lighting, sound, people moving, rapid changing of activities.  It's all overwhelming to my little autie.  Every single sensory system in his body works over time.  Sounds are super loud to him, movement is fast and sometimes scary.  What will it take for them to understand, how long will it be until they completely destroy his passion for learning????

Latest app!

Well we loaded another app on the iPad. This one is called sentence builder. Gabe played with it a little tonight and wow it is an awesome app! Gabe made sentences with just a little help from mommy. It uses pictures and Gabe has to build a sentence from what he sees. An example: there were two brown dogs in the picture. Gabe had to build the sentence "these dogs are brown". This might become a favorite work time app!

iPad apps are WoNdErFuL

Gabe loves the iPad, the iTouch, or anything electronic for that matter.  He was playing the computer at 2.5 years old, but not talking, go figure!  So we have been using apps for awhile on the iPad and iTouch and I thought I would give a shout out to a couple of them.  First on the list is Proloquo2go.  It's a fully functional AAC (assisted communication) device.  Everything you need to say in one little app at a great price compared to desk top type AAC devices.  Gabe is verbal, so he does not need a fancy AAC device, although we have used them in the past and they are amazing and helped Gabe to a great degree.  And it's something we still go back and forth on, but for now P2G is awesome!  Gabe has severe language issues and word process, word recall issues.  So asking for certain items, or trying to tell me something he did at school can be extremely frustrating for him.  Words don't always flow quickly, not to mention motor planning is a huge issue.  We call it mush mouth.  When Gabe says too much at one time and no one can understand him.  Proloquo2go bridges the gap for Gabe and decreases those communication breakdowns. 

Next on the list.  Stories2Learn.  This is a social stories app.  It allows you to customize your child's social stories.  Finally there's an App for that!  Gabe loves to run in wide open places and doesn't stop to look for cars.  He even struggles to stop when mom and dad yell STOP!  So we made a social story about that.  On Trick or Treat night we made a social story about walking with mom and dad, no running, saying please and thank you.  We all had a blast and Gabe did a great job walking with mommy and daddy!

It's even easy enough my 25mo old can use it.  He's already "spelling" words :)  Okay...so you can't spell them wrong, but it's still great for learning letters.
The next app I plan on downloading is sentence building!  It's a total language based app. 

Happy "pod"ing

quotes....

I was watching a video on YouTube called "Unlocking Autism" and there was a quote from Albert Einstein that I found incredibly moving. "Few see with their own eyes and feel with their own hearts."  How very true.  One thing that intrigues me most about Gabe is his pureness.  He sees the world for what it is and nothing more.  His love is real.  His mind is not fogged by what society deems important.  Love flows from his body.  And he truly sees with his own eyes and feels with his own heart. 

Things have been very rough since I last blogged, but one very awesome note of progress....GABE IS EATING!!!  Some days are better then others, but he is pretty much back to normal in the food department.  School on the other hand is not going so good.  Gabe is struggling loads.  It was recommended he be placed in an autistic support class because he is having such a hard time within the typical class setting.  One of the biggest issues is doing non preferred activities.  He hates certain centers.  His frustration is climbing to an all time MAX!  Gabe's ability to effectively communicate is very small.  The school does not have any augmentative forms of communication in place for him at all.  There have been so many failed attempts at communicating that Gabe has given up.  He resorts to screaming, yelling, and hiding under the table. 

His sensory issues are out of control.  Loud sounds, soft sounds, the kids moving with in the classroom are upsetting him.  He can't stay in his seat and refuses to go to circle time most days. Hopefully the school can figure things out soon.  In the mean time we teach him as much as we can at home....although he seems to do a lot of learning on his own.  It's amazing what he can figure out by himself.  

Harvest Festival 2010

Over the weekend we enjoyed some family time at the Harvest Festival at Sprout Wood Farms.  It was a lot of fun.  We saw goats, drank yummy fruit slush's, participated in a drum circle, climbed trees, and listened to some good music. 

Zane really enjoyed throwing sticks and stones into the stream with Daddy.  The weather was 100% perfect.  It was so nice to be outside and enjoy the fresh air.  Zane ate a little bit of pretzel and loved riding around on a little kiddie bike they had.  He played with another little boy in the family fun area and climbed trees with his brother. 

Gabe wasn't so sure about the drum circle at first.  He found comfort hiding behind Daddy.  It didn't take him long to decide it was okay to participate in the drum circle.  He had fun making thunder sounds with the thunder clapper and shaking the maracas!  Zane played along too.  The drum circle was a way to thank Mother Earth for the wonderful Harvest.  People were dancing and have a great time. 

I think the best part of the whole day was watching the boys climb in the trees!  They were great climbing trees too!  Perfect for little feet.

What a wonderful day we had!!

It's been awhile since I have updated...

And a lot has happened.  Gabe started school.  Kindergarten!  It has been a very big struggle for him.  He is having huge problems transitioning.  He cries, screams, kicks, spits, throws things, etc.  Yesterday was his first day back to school after 5 days off.  He had a great day!!!  His teachers are using picture schedules, social stories, and tons of sensory items to aid him in transitioning.  It seems like they have all their ducks in a row, but it has been a struggle trying to explain Gabe to his regular ed. teachers.  They seem to have this idea of what a kindergartner should be able to do, and my child in many ways can do more then the "normal" kindergarten child, but in a lot of other ways he is extremely behind his peers.

Gabe also continues to refuse most food.  Just within the last two days we got him to eat baby food bananas and baby food applesauce.  Regular applesauce causes him to gag.  Because he has such severe food aversions and fears associated with eating it has become necessary to insert a nasal gastric tube to ensure he is getting enough nutrition.  Gabe's TSS did manage to get him to chew and swallow a piece of Mario candy.  YAY!!!  We have an appointment with the GI doctor soon to discuss the need for a more permanent tube called a mic-key tube. 

On a more fun note...because this blog is getting pretty depressing...Gabe lost his first tooth on his first day of big kid school.  Really I knocked it out!  Gabe was fighting me about brushing his teeth and he moved when I was brushing them.  That very loose tooth didn't stand a chance against the power of the toothbrush! 

Gabe also has been on a gluten free/casein free diet for a week now.  One thing I noticed was Gabe's increased use of words.  His speech also seems clearer.  He isn't working so hard to find the words he needs to communicate!  Bonus.  It's been very easy going GF/CF because Gabe doesn't eat.  I guess that's one advantage to all of this.  Hopefully down the road when he decided food really is yummy we will be 100% prepared for the GF/CF diet. 

On to Mr. Zane!  Wow he is growing like a weed.  And starting to use more words.  Zane's favorite thing in the world is CARS!!!  Just like his brother.  When we get out of the car in a packed parking lot all we hear is cars, cars, cars, and it's so cute.  The way he says cars sounds like he is from Boston, Ma.  I love it. 

Zane is loving daycare most days.  He only goes 2-3 days a week, but enjoys his friends and teachers.  The other day he came home blue!  His teacher had blue day and all the kids played  in blue jello.  I'm sure he had a blast getting all sticky and eating blue jello. 

I can't believe he is going to be 2 soon.  Where does time go?  I tell him all the time to stop growing, but he just doesn't listen!

Zane continues to have speech therapy.  We LOVE his therapist.  She worked with Gabe for almost two years...and is totally worth her weight in gold!  She is till offering great advice for Gabe and I pick her brain every chance I get. 

Please eat little Gabe

My heart is breaking into a million pieces. It has been a month since Gabe started refusing solid foods. He has lost just over six pounds and continues to restrict his diet to mostly yogurt and pediasure. He has eaten a few bites of ice cream here and there, but nothing worthy of counting as calories. Gabriel had an endoscopy done the other day. I was really praying it was a medical issue that could easily be fixed and I would have my little guy back again. It turns out his esophogus is 100% normal. I know I should be happy. And really I am. But fixing the "autism" feeding issue is so much more difficult. Gabe now has to go to a feeding clinic where a therapist will teach him how to eat solid food. I haven't slept in days. All in do is worry about my precious little guy and how hungry and sad he must be. Even Gabe's behavior is different. He screams in my face and cries at the drop of a hat. I want my sweet lite autie back. I pray every night for him. Please eat little Gabe.

Frustration continues.

Gabe is down 5lbs.  Five!  His summer clothes from last year now fit him again.  How much weight is the pediatrician willing to allow him to lose before they decide this is something more serious?  We took Gabe to the ER on Friday because he was crying that his throat hurt and that he couldn't breathe.  That's not behavior.  This is not because he has autism.  This is something more.  My mommy gut is telling me this is not Gabe being fixated on the idea he will choke.  My little guy is experiencing real pain and his pediatrician is sitting my idle allowing this to go on.  I am watching my son starve himself and no one is listening to me.  The ER doctor was the most helpful.

We have Gabe's name on the wait list for the feeding clinic.  It could take a couple months to get in there.  A COUPLE MONTHS.  So what am I suppose to do in the meantime?  Let him starve?  He is so hungry and he just won' eat.  What is probably a physical problem is quickly going to turn itself into a psychological problem.

Frustrated.....completely.  :(

please eat little Gabe....

....day 17....still no food.  Gabe is down 3 pounds.  He still wants nothing to do with eating.  He only wants to drink and eat Spongebob GoGurt.  I have had him at the doctor 3 times in the last 7 days with no solid answers.  We have tried everything.  The doctor is sending him to the feeding clinic.  They will be able to assess if he needs scoped, a swallow study, etc.  I was holding it together really well, but as each day passes I am finding it harder and harder to deal with this.  Gabe is losing ground and I feel like there is nothing I can do to stop it.  What is happening to my baby?

Still refusing to eat.

Gabe is still not eating.  We are on day number 12 of this.  I bought some strawberry Pedisure.  Thank God he likes it.  I figure if I just give him 3 of those a day and carnation instant breakfast he should be getting all that he needs.  Or close to it.  Frustrated.............................

Eat Little Gabe Eat.

Out of sheer frustration I am blogging.  Gabe is on a food strike.  It all started with a tummy ache and maybe a sore throat...as Gabe was unable to truly tell me what hurt.  Since then it has turned into a fear of eating.  He is convinced he will choke if he eats.  Today I took him to the doctor and his throat is fine.  It's not red, it's not infected, rapid strep was negative.  The doctor thinks it could be a virus.  I'm praying it is just a virus and not a huge regression.  He is also stimming a lot.  Tracing the wall with his fingers, flitting his fingers in front of his face, pacing, echoing, etc.  I can truly relate to those who have kiddo's with feeding issues.  I have a new appreciation as to what their daily lives are like.  Gabe has narrowed his food selection down to yogurt and chocolate milk.  If I do manage to get something in him it is a couple bites and panic sets in that he will choke. 

I'm giving it one more week.  Next Monday I plan on talking to his private OT for some guidance as to what steps to take next.  Hopefully I won't have to have that conversation with her.  How long can a kid live on yogurt and carnation instant breakfast? 

Cookie Monster!

Gabe's first baking/decorating masterpiece!  The Cookie Monster.  Gabe had a blast rolling these sugary treats in sprinkles and adding spider sprinkles for eyes.  He had even more fun eating them.

Our family is loving summer.  We are having a great time at the swimming pool and spending some family time at the kitchen table putting together puzzles.  Gabe used to be a puzzle nut when he was younger.  Hopefully we can bring that back for him.  We also broke out the Wii Fit.  Gabe and I are doing a daily jog everyday.  Maybe he will be a cross county runner someday?!
Zane is busy learning how to talk.  He says "ma ma" for mine, mine!  It is so cute.  And of course I have to take his toys from him just so I can hear him say "ma, ma" and then scream!!  He is so loud.  He is doing great for his speech therapist.  He says or approximates mine, daddy, mama, hot, light, no no and he signs bath, more, thank you, candy.  Zane is showing a few signs of autism.  He spins a lot and he is starting to rock back and forth on the couch, but is easily distracted.  Matt and I both agree we are going to take a sit back and just watch approach as to if Zane may or may not be ASD.  In the mean time...loads of reading, tons of floor time, and even more time spent on having FUN!!!

It breaks my heart

Yesterday while riding home  from school, Gabe told me he doesn't like his voice.  He said he wants to talk like his cousin.  How heart breaking.  I don't want Gabe to realize he talks different then other kids.  I don't want other kids to make fun of him.  It breaks my heart to no end knowing other mean children are going to pick on my baby.  I like living in a bubble where I can imagine that all people and all children treat each other with respect.  It won't happen.  Kids are mean....hell big people are mean.  When you don't talk like society thinks you should you are immediately labeled "stupid", "slow", "retarded".  Gabe is none of those.  The one thing I hate most about autism....Gabe's language issues.  If I could fix that today...I would.  I can handle the meltdowns, the need for sameness, the spinning, jumping, echoed speech, but when he knows he talks different....I can't handle that.  I don't want him to feel less....he is no less then anyone else....and I need him to know that.  I love my son...may he always be surrounded by those who love and see him for who he is....he has so much to offer.

Too Much School

Can there be such a thing as too much learning??  You bet!  Poor Gabe is so burned out from school that he cries every time he hears it's a "two school day".  The last two days I have kept him at home.  He needs the break.  We spent an entire Tuesday snuggling and playing Mario Galaxy 2!  Then we went swimming.  It was a great day. 

I am so ready for school to be done.  Gabe's going to go to his first ever day camp at LUF.  An entire week of fun, fun, fun! 

We also decided NO SUMMER SCHOOL (also known as extended school year) for Gabe.  It's a last minute decision...but one that I feel is the right choice for Gabe.  He is totally therapied out.  I can't say I blame him much. Three to four days a week of speech therapy for the last 3 years.  And while I know how important intensive therapy is....Gabe still deserves a break for a job well done. 

So our summer plans are to be lazy and enjoy the pool...and cut back speech and OT to 2 hours a week.  It's going to be a great summer.

Update on the kiddies.

Zane's tubes have been placed.  Yay!  He has had one ear infection since then :-( Boo.   But seems to be doing better.  Matt and I decided it was time to call early intervention for Z, given the fact that he really isn't adding new words and receptively he seems a wee bit delayed. I'm hoping it's just from recurrent ear infections.  His words so far are uh uh (UH OH), cat (for everything), dada, hot (for hot, cold and light) and that's it.  I was hoping for more by now.

Gabe graduates preschool next week!  Then it's off to kindergarten.  I am really having a hard time dealing with the idea that he is going to be in school 5 days a week full time.  I might have a mini meltdown.  My baby isn't my little baby anymore. 

Our pool at our complex is open!  Woo hoo.  Gabe's been swimming twice now.  Zane hates it and cries....but Gabe's a fish.

We have lots of fun things planned for this summer and can't wait to sit back and relax!

Tomorrow....is the (cue dramatic voice) IEP meeting.

I'm feeling a little ill about all this.  I'm not too sure what to ask for, how to approach Gabe's needs, or for that matter who will be on Gabe's side, besides me of course.  I think I know what he needs, but the school has not always agreed with what I think.  They have their own agenda and I can respect the fact they are on a budget, but in all honesty I don't care if the Principal has to take a pay cut so long as my child's needs are met with the "appropriate" services.

I'm reminding myself not to tell the IEP what Gabe needs, but ask what they think would help him.  Deep down I know what he needs.  I just have to let the educators help me.  After all they are the one's who went to school for this, right?  Maybe after tomorrow's meeting I might be typing an entirely different post.

Gabe does have a great sped ed teacher.  And I hope she is able to convey the importance of sensory breaks during the day for Gabe.  Getting OT services for Gabe has been like ripping out teeth on an unsadated crocodile.  Very time consuming and dangerous.  Gabe has had an OT on consult for some time...and finally we have some sensory outlets in place.  I need for those outlets to carry over the the school. 

I'm sure I'll be back to post again tomorrow.  Prayers needed....and loads of them.