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.

You break my heart...

...all three of them!  Today Gabe stole a high lighter from the UPS store.  I made him take it back and say sorry.  He also got grounded and couldn't have his cousin over.  On the way home he told me "you break my heart, my free (three) hearts."  I said, "buddy, you only have one heart"  Gabe replied, "my bideo game hab free.  I hab free" [hearts]  I had to move the mirror so he wouldn't see me chuckling at his comment.  How can I get angry with him when he is so gosh darn cute sometimes?

I'll try not to break his three hearts anymore.  In the meantime I reminded him he can get more "health" if he eats his green beans.  

Zane and the Ears.

Zane's ears have been the topic of conversation for some time now.  He has had one infection after another for more then two months.  Thankfully we are getting tubes at the end of the month.  And it just can't get here fast enough.  I have missed so much work, been called out of work early, lost countless hours of sleep, I think I have a stress induced eye twitch (seriously), and I am just ready for NO MORE EAR INFECTIONS.  So, today we went back to the pediatrician...WHY? you ask....another ear infection.  BUT this time I have a refill on an antiobiotic....yippie....one less dr. visit we will have to make before tubes go in.

The silly doctor tried to tell me they won't do maintenance antibiotics.  So I told the doctor..."Zane's been on an antibiotic for more then two months with a 3-4 day break in between his next round of meds" ....dr....looks at chart...hmmmm...wow...that's a lot of antibiotic "so, can I just get a refill on whatever you are giving him this time so I don't have to come back in 13 days?"  I left with my refill.  One mom 0 dr.  I normally say NO to antibiotics, but we just can't rid this evil bug from Zane's ears

Don't you worry your dirty little head off evil germ bug.  It won't hurt you a bit when the ENT sucks you from the depths of my little guys ears.  Oh I will get even with you.  You have caused much turmoil in this house....and your day will come.  April 30th.  Judgment day...what would you like for your last meal Mr. Germ?  How 'bout a round of zithromax. Whhaaaa hhaaaa haaa. 

You see...I have already lost my mind, I'm talking to germs.  If tubes don't work.....it's the looney bin for me.

You have teeth....

This morning in the family bed....during some well deserved snuggle time Gabe noticed for the first time ever, Zane has teeth! His conversation with Zane went something like this.... "You hab teefe Zaney. Now you talk. You hab teefe, you get bigger, you be my buddy!" And the smile hasn't come off my face yet. I love my kids....

Can't answer questions....

I got a note home from Gabe's school ST. She said he is struggling with answering "where" questions and questions pertaining to a story that was just read. Gabe does struggle with this A LOT!!! So I got a brilliant idea. I programmed Gabe's AAC device to have different aspects to a story that I was planning on reading at bedtime. I read the story and he answered every single question with his talker!! Wow....it's amazing how well he did when he had picture prompts in front of him. He even made complete sentences using his talker..."The cat drank the milk", "He went under the ocean" Gabe doesn't talk in complete sentences....so it was great to see him make them on his talker. I did have to do some prompting to get him to use the, he, etc. It's a start. We are going to read the same book tonight...this time I am not going to do as much prompting.

I also talked to the AT team at AI duPont. The speech therapist there is going to do a complete AAC evaluation with Gabe to address his word retrieval and pragmatic language issues. I hope we can get in soon. I am so excited. I should hear from them on Thursday or Friday. YAY!! We have been using P2G with great success...it's time to think about a device that can do more. Don't get me wrong...We LOVE proloquo2go. It's a wonderful aac device...and very portable. It's worth every penny. But I would like to get some solid answers from an AAC evaluator with an SLP/CCC degree. I can't wait to go to duPont.

"Don't you think it's time....

....for Gabe to give up his nunny (pacifier)" My mom says to me the other day. Gabe just turned 5 and now it seems that everyone who "understood" why Gabe still used a pacifier thinks we need to break the habit. I agree, it does look silly that my five year old is walking around with a nunny. But for now...he needs it...a lot!

Yesterday my mom took Gabe bowling. He went with three of his cousins and a few family friends. Gabe has been bowling two other times. Both times he struggled to stay with the game. But he was 3 and just 4 when we went. I thought now that he is five (it's a magic age) he will do just fine.

I told Gabe no nunny when you bowl. When Grandma came to get him he willingly placed nunny on the table and quickly ran to get in Grandma's car. Honestly I was impressed. "Go Gabe!"

About an hour later my mom calls me...."Never, ever, ever let me leave your house without a nunny!" HA....not ha that Gabe was having a hard time...but HA because now it became very clear to my mom why Gabe still needs his nunny.

The poor kid went into sensory overload. He chewed his sleeve to a wet soppy mess, rolled all over the floor, cried easily, and just couldn't stay focused to bowl.

Once again....nunny stays!

Because sometimes "they" don't listen

I have decided this blog will be best suited not only to pour out my heart and soul as a way to vent, but to also keep track of how Gabe is doing in school and at home. Recently I went to an autism meeting and the guest speaker was WONDERFUL. She reminded everyone to keep track of the things our children struggle with, so that they may later be used to help gain services. That's my plan with the blog site.

This week I got a note home from the teacher that Gabe is having a hard time attending. I decided I would sit in on a class and watch him. Sure enough I found him spinning on the carpet and not paying attention. He did follow along with the group at times, but then would head off into Gabe land.

At story time I noticed he would not join the group. I decided to sit on floor with him. He sat on my lap and joined the other kids for story time. While the teacher read the story Gabe twirled my hair. He was calm and relaxed. He even answered questions about the book!!! The next day I wrote a letter stating Gabe's need for sensory breaks and ways to help him pay better attention at circle time. And low and behold...I got a letter back. It was from the special ed teacher, written in all red (brought back some good old school memories). She agreed to ask the OT for some sensory break ideas and a wiggle pad for Gabe's bum. The catcher to all this...she wrote "maybe it will help with behavior at home". Ugh.

Yes, Gabe gets home from school and spends a good amount of time stimming and getting his energy out, but I don't need him to focus at that time. I didn't ask for the OT to help for things to be better at home. I really feel like they just don't listen to me.

Sometimes I feel like saying..."you deal with it" But I know the consequences to that. My niece was left at the hand of the school district. She's struggled her for entire educational career and was misdiagnosed via the school. I will not let that happen to my son. I can see him struggling already. I will not be a mom that sits back and shrugs my shoulders. The school can think whatever they want about me. In the end I will know that I did everything in my power to help Gabe have full access to his education.

Rollerskating

Gabe's going rollerskating for the first time ever today. He is so silly. Gabe thinks he needs to take his scooter. I told him scooters aren't allowed and he cried because he thinks rollerskating is skateboarding. "I not know how to skateboard" "I fall" Awww....I made sure to tell him there are no skateboards allowed.

I can't wait to see how he does.

Watching Gabe struggle

Nothing hurts more then to watch your child struggle with things that other children seemingly grasp all on their own. Why doesn't Gabe's brain allow him to communicate like other children? What does the world think of him? What will people think of him when he is older? Will they think he is stupid?

I see the way grown adults look at him. I see their questioning eyes. If only they understood why he cannot answer their questions. If only they took the time to see Gabe for Gabe. He is such an amazing kid. His eyes speak a thousand words.

Today was a rough speech day. Gabe struggled all day long trying to tell me about his needs and wants. He tried to tell his speech teacher today that he wanted to play with the trains before he started speech, but he couldn't find the words he needed. I could have cried right there in the office. I knew what he wanted, but I can't be there for him all the time.

I wish I could protect him from the world. Keep him safe in a bubble. Protect him from the mean people that always seem to have "helpful" advice.

Some days I just want to sit and cry. Running here, running there, this appointment, that appointment. Speech therapy, IEP's, psych evals, neuro appointments. I feel stretched thin as it is....and then days like today...they tear my heart apart.

More snow...and the meltdown.

We have about 20 inches of snow on the ground. After tomorrows snow stops dumping on us we are going to have about 38-40 inches of snow of the ground. Zane can surely forget about going out to play in that snow. He's only 28 inches tall. :-)

You would think all the snow would be gone after Gabe's massive meltdown today. Our whole day was thrown off. Gabe had an appt. with the psychologist so we didn't have school today. He was not happy about missing school. Morning was a little rough. I had to do loads of prompting and redirecting to get him motivated. After our appt. with the psychologist I took Gabe to McDonald's. On a happy note Gabe said Maaac doooals...normally he calls it mic hap u. So I was very very excited that he tried to say it the right way!

We went back to Gabe's daycare to have lunch and so that he could have some down time with friends. I had another meeting to go to at Gabe's school and then I had to go to the grocery store for bread and milk. It is snowing again! :-) Once cannot survive a snowstorm without bread and milk. And of course loads of junk food.

After all my running around was complete....I headed back to daycare to pick up the boys. Gabe was NOT coming with me. He threw his shoes at me, screamed, cried, kicked, hit me, ran from me, laughed at me, and did just about every except listen. I had to take the baby out first, then come back in to get Gabe ready to go. Needless to say....he left without his shoes or socks on...and no coat either. It was just one of those days....

Change in routine = one unhappy little boy and one unhappy mommy.

Zane's Dr.'s appt.

Zane is an itty bitty. He is only 28.5 inces tall. My little snooker. Poor baby got two shots today. I talked to the Dr. about Zane "lost" speech. He stopped saying momma and kitty. His Dr and I both agree to keep an eye on him...but that it's probably related to learning to walk. Also, Zane has been doing this walking in a circle thing. That has me a wee concerned....but mostly no....not concerned at all. Matt and I have talked about it, and if Zane in on the spectrum....that's okay. He'll just be cool like his brother.

Winter....

Our big 2010 snow storm!!

Gabe loved the snow.

Zane watched from inside.

Milo enjoyed the snow too!

First ever Autism meeting.

I went to my first autism support group for parents meeting. It was wonderful. My mom and I went. It felt so good to be sitting in the company of others that are on the same journey as my family is. Gabe got to play while I got to sit and listen to others stories and share our own story. I can't wait to go again. This is exactly what I needed.

As far as Gabe goes. He is doing rather well. School is going well for him. He is being more social with peers. According to his TSS he still reverts back to Mario brothers during his play, but at least he is using his imagination! I am very proud of all of Gabe's hard work.

I went to the pre screening kindergarten meeting yesterday. I asked for a full psychological test to be done. I am excited for Gabe to start kindy. I think he will do just fine.

Zane is doing great too. He is an official walker and he get into EVERYTHING!!! He is sick right now. We have been battling a double ear infection for over two weeks. And to top it off he started wheezing. So now he has to do breathing treatments. Bllaaa! He goes back to the Dr. on Monday. Hopefully those ears are all cleared up...I can't wait to see if he has grown. He is such an shorty. Healthy weight...but very short.