Opinions NOT needed

For the past few weeks Kaleo has had some issue with holding some one's hand. He can start off holding hands but shortly after he will snatch his hand away and insist on walking on his own. If I let this happen he either starts walking away quickly or will even start running. He will be laughing the whole time but will not listen when I tell him to stop. At that point I have to grab him and grab his hand or at least try my best to. He will get very upset, throw himself on the floor and go limp when I try to stand him up. Believe me this is NOT an easy task. Kaleo is only 4 but is a big boy. At the rate the meltdowns are going and how I physically need to pick him up, I fear my back won't make it much longer. I then have to pretty much let him stay on the floor and let him work it out on his own or try my best to get him to comply. So I have resorted to going back to the stroller in order to keep him safe and to also keep my back intact. If I'm out of commission there's no one else to care for Kaleo and Leilani.

Today we went at the post office to pick up a package. As we were walking home a lady was near us who was speaking extremely loud on her phone. I tried my best to ignore her, Kaleo couldn't so instead he covered his ears. As she is walking past us she looks at Kaleo and says "you are way too big to be in a stroller" then looks at me and says "put that boy to walk" while laughing. Well she was the only one who was laughing. I glared at her and it took everything inside me to not let her have it, although I soooo wanted to. I chose not to entertain her asinine comment with a response. 

It always amazes me when people can just make comments or give their opinion on situations they know nothing about. Does ME pushing MY child in a stroller have any effect what so ever on your life? Does it change anything within your world? I'm pretty sure it doesn't but it does have a major effect on mine. Any clue what that could be??? It's pretty darn simple really. It can be summed up in 4 words. KEEPS-MY-CHILD-SAFE......Tada!. 

 I know that I could've said to her "he has autism and likes to run. This is how I keep him safe" but in that moment I choose that it was best to just walk away. Kaleo was already covering his ears because of the volume of her voice and should that interaction have gone south it was only going to upset him more. So loud lady on the street and all the future 'loud ladies'  I'm sure we will encounter in the future. Today I let it slide....next time I won't. It is not your place to spew your opinion on others when said opinions are unsolicited. You do not know the struggles and battles my child is facing. Yes, he does look like a typical child ... but there are disabilities that can't be seen.

Kaleo - The beauty of autism

Today was Kaleo's first time ever going somewhere (besides school of course) without me. It was actually a school trip to a farm. Let me preface this by saying I had initially told the teacher he would not be attending the trip. 
When my daughter was his age I would not let her go to any school trip unless I accompanied her. Her teachers would say over and over how I could trust them, that no harm would come to her, but I would not let her go. It wasn't until she was in 5th grade that I let her attend school trips on her own.
So here comes the permission slip from Kaleo's school about this visit to the farm. Automatically my answer was NO!! my reasoning?...well he's only 4, he wears leg braces (even though with his "superhero legs" as he calls them he can run like no body's business), he might have a seizure, he might cry because he's away from mommy (ok, ok so that's more me than him), he might get bit by one of the animals, he might get lost and because.....he has autism. He likes to wander off, he doesn't always like holding hands-he likes to feel independent, he might have a meltdown but more so he might get lost!!!! I spoke to his dad and asked his opinion. He said send him, he needs to learn how to handle different situations. He was right but I still wasn't too sure.
Then it hit me....what a hypocrite I was. Here I talk about wanting him to grow up and be an independent person, someone who has learned to handle different situations, someone who has learned to function without me,someone who can continue to live his life on his own once I'm long gone but yet I was going to stop him from learning to do all that. I realized I had to let him go. I had to let him experience this. Of course, I went and spoke to his teacher in person and expressed my numerous concerns. She assured me she would hold his hand...she even promised me she would. She reassured me that Kaleo's 1:1 aide would be there with him the whole time also holding his hand.....it's her job to just watch him. I cannot lie thoughts of Avonte Oquendo quickly flooded my mind. Again, I had to stop..stop and let my child learn, I told his teacher okay he could go.
This morning I dressed him in comfortable clothes, adjusted his leg braces just right, packed his lunch-giving him a sandwich, water and goldfish crackers. I wanted to make sure his lunch wouldn't add to any anxiety he might have. I packed exactly what I knew he would love. I made sure to write in his communication notebook to his teacher how nervous and worried I was for him. I wanted to reiterate to her that someone needed to hold his hand..keep him safe..not let him wander off...watch for possible seizures.......keep him safe for me. As I watched him walk up the steps of the school bus, I wanted to cry...was I truly doing the right thing?? The trip would be from 9-1pm. At exactly 8:59am the nerves kicked in....they lasted up until I saw his school bus pull up..saw him exit and hugged my little man. He looked at me and gave me a kiss.

Do I want to say that today will be the last time I will ever feel unsure about sending him on a trip or having him be far from me? Of course I want to say that but it would be a flat out lie. 
However, what today has shown me is that as much as I want to keep both my children in a plastic bubble and protect them from the world, I cannot. I have to let them both learn and grow. Experience new situations. Trust and believe that they will be okay. Truly trust and believe that my child, my baby, my little rock star who happens to have autism will learn, will adapt, will enjoy and will conquer the adventures and situations placed before him. 

Above all, how I should never doubt his ability. Actually, that's the wrong statement. I don't doubt his ability because I see all he can do and all he has yet to do. Instead I will make sure to have the ability within myself to let him grow and learn. Remind myself that he has all the ability of the world, its just my inability of not letting all the immense love (and fear of everything that can go wrong) keep me from letting him blossom.

*****below you will find the actual note his teacher sent home*****

C'mon Mom, get it together!

Kaleo got extremely upset today because I gave him milk and cookies instead of cookies and milk. How dare I do such a thing?!

Peek a boo

An extremely young Kaleo. He would hide his eyes a lot. Thinking back I wonder if it had anything to do with his autism or just typical infant behavior.

 I do not bother trying to figure out how or what caused his autism. I can't change it. I just have to concentrate on doing all I can for him now 

April-- National Autism Awareness Month

Day 1: April is National Autism Awareness month. What I wrote in my "Dear Autism" graphic explains EXACTLY how I feel. My little man is a shining beautiful example of what a child's life with autism looks like. My hope that not only April brings about awareness but that all year round people learn more and above all learn acceptance

Day 2: Last year when we still lived in Florida we went to Lake Eola for the lighting of the fountain in blue. It was a very special event for us and we all enjoyed it. Wish we could've taken part in it again this year

Day 3: Kaleo has had a hard time speaking up in class. His teacher always comments on how he is very verbal on a one to one basis but once there's more than one person (unless it's his family) he won't speak. So today I opened his progress book and saw this! It's quite a huge achievement for him!!!
Day 4: I am BEYOND proud of Kaleo. He has come so far from where he was. He's achieved so many goals. I'm proud when he repeats "momma, momma, momma" when it was not too long ago that he didn't speak. He makes me proud when he tells me his wants and needs. My heart swells when he randomly hugs me and tells me that he loves me. When he speaks up in class or simply when he sits patiently while at one of his zillion doctor appointments. I am proud of all he has achieved and has yet to achieve.
Day 5: Kaleo is extremely proud of himself when he completes a puzzle on his own. When he's able to make us laugh with the silly things he does. When showing the artwork he creates at school. He especially likes to use the sign language he used before becoming verbal.
Day 6: Kaleo shows his emotions really well. They range from love with his sister to affection with his dad, plain silliness or feeling shy and anxious about meeting up with someone who he hadn't seen in awhile. br /> Day 7: Kaleo's view on things is very comical. It's always interesting to see what he will do next. He will wear funny glasses, wear a drum on his head, be fully engulfed in his ipad( and that's the only view he sees) or wear his sister's leggings.
Day 8: Our current goal with Kaleo is getting a 1:1 para approved for him. I have an upcoming meeting and hopeful this will happen!
Day 9: Love Kaleo's ability to share his love is what makes this ride called autism, worth every meltdown or challenge
Day 10: Kaleo was nonverbal until he was about 2 & 1/2. His first word was "cow" and it was bc he would use a animal app at speech therapy that had different animals and their sounds. The pic on the left is when he was nonverbal and shortly after he was diagnosed. The one on the right is him now and he talks/sings alllll the time now lol
Day 11: Kaleo has many sensory issues. He constantly covers his ears when the noise level is too much for him..sometimes he does it to just calm himself down. Brushing really helps him and gives him the sensory input he's seeking. Paint was something that at first he did not like touching, he loves it now. Toe walking is a constant. Seems it's a combination of a shortened Achilles' tendon and also sensory. Swinging is something he has always loved since he was a baby. When he was 4 through about 6 months old he would only sleep in his swing. Looking back now it makes sense why he did that.
Day 12: Kaleo loves to play. If I would let him he can stay in the playground all day.
Day 13: an afternoon at the park. Kaleo's favorite way to spend an afternoon.
Day 14: Kaleo used the PECS system before he really became verbal. He was introduced to it by his amazing OT. It helped us so much, we still use it!
Day 15: some of Kaleo's fave apps are "Endless Alphabet", "Garage Band", "Yo Gabba Gabba, Party in My Tummy" and " I Dig Dinosaurs
Day 16: Kaleo likes to hold hands, although lately he's been running away when someone is not holding his hand. So it's mandatory now that he holds on to someone.
Day 17: There are so many wonderful memories with Kaleo it's hard to narrow it down to one. From his first day with his drum set, swimming in the pool, experiencing his first time around snow to being "Super Kaleo " for the autism speaks walk
Day 18: Kaleo's favorite outfit involves anything dinosaur related.
Day 19: Kaleo could live happily on these foods as they're his fave. Pancakes, pizza ( while checking out the ladies ), "crema" or cream made from rice flour and of course bananas which also substitute as phones
Day 20: Kaleo loves being with his family. Whether it's playing on the park with his Nani, as he calls his sister , sitting in my lap while watching tv or spending time with his dad when we went to visit him. He thrives on family time
Day 21: what kid doesn't like playing with Legos.
Day 22: Over the past almost 4 years we have become pretty familiar with waiting rooms. Whether it's waiting around to see his primary doctor or eye specialist, getting ready to have MRIs to monitor his brain cyst or having 24-72 hour seizure monitoring. Although all this familiarity does not make the process any easier.
Day 23: when we lived in Florida the dulce de le he Cheerios were his favorite. In NYC we have yet to see them sold anywhere, so now he will eat Alpha Bits without milk. However, he will always prefer his grandma's "crema" any day
Day 24: Kaleo's obsessions include dinosaurs ( of course), his iPad , Monsters Inc and George Pig from Pepa Pig
Day 25: Laughter has never been lacking for Kaleo. He was always a happy baby and always enjoyed laughing.
Day 26: Kaleo needs his "super hero" legs in order to help him walk. Once he's not wearing them he automatically goes back to toe walking.
Day 27: Kaleo loves running. He can be off and running in a second but usually ends up on the floor..... Which is the only way I can catch up with him lol
Day 28: Kaleo loves laughing and having a fun time. He especially enjoys making funny faces.
Day 29: if it's water related Kaleo is all about it. He loves water!! It calms him down
Day 30: Kaleo's smile ALWAYS brightens up my day. No matter how much life for us has changed his beautiful smile is a constant.
I'm not an ice cream person but when I saw these blue sprinkles I had to get some. Autism awareness does not end with April, I just hope you have learned a thing or two from this post. Autism now affects 1 in 68 children and 1 in 42 boys. The prevelance of autism figures are growing. If you do not know someone with autism now soon enough you will. When you do meet that person with autism I hope some of what you have learned will help you.

Please....don't

Please don't use Aspergers as a scapegoat for Elliot Rodgers' actions. The media is quick to place blame for the atrocities this person has committed but like Adam Lanza I'm sure he had a mental disorder. Aspergers -which is on the autism spectrum is not a mental disorder it's a DEVELOPMENTAL disorder. 

Don't you dare blame this on Aspergers

Internet Footprints of Elliot Rodger

Our Journey

*CLICKING ON THE LINKS IN BLUE WILL PROVIDE YOU WITH MORE INFORMATION*

In September 2009 we found out we were having a baby. Eight years earlier we had our beautiful Leilani, so to find out I was pregnant, it was quite the surprise. After getting over the initial shock we were so excited to welcome a new member to our little three person family. Everything was going smoothly until Halloween. We had taken Leilani trick or treating at our local mall. We had been walking around collecting candy for a little less than an hour before I felt something was wrong. I went into the bathroom of a Subway restaurant and saw that I was bleeding. I immediately felt my heart race and being so scared. I was quickly taken to the emergency room, I was told everything was okay. This heavy bleeding (sometimes with clots) would continue on and off until December. Need less to say I was placed on bed rest. I was never given a reason at that point as to why I was bleeding.

Towards the end of my pregnancy, I was told a few times about seeing extra fluid in the back of the baby's head. My high risk OB wanted to perform an amniocentesis at 32 weeks gestation. We refused. The doctor mentioned hydrocephalus and how a shunt would be a possible solution. At 37 weeks I had a planned c-section. Kaleo was 6lbs 7 oz and perfect in everyway. That same day they did an ultrasound of his head and I was told he did not have extra fluid in his brain

Kaleo from the start was so immensely loved not only by myself and his dad but by his older sister who was completely over the moon with him.

Kaleo was an extremely happy baby, however, he did not sleep much. We simply chalked it up to typical newborn baby behavior. At about 2 months he started projectile vomiting after every feeding. He spent about 75% of the day crying. I took him several times to his doctor. He started him on zantac and changed his formula to Nutramigen. There was some improvement.

Kaleo pretty much reached all his milestones on time. He walked at 12 months. When we would crawl he would tuck his left leg underneath him and drag it. I took him to see his doctor and a physical therapist for an evaluation. They figured it was a sensory thing and he would grow out of it.

At 16 months, Kaleo, was not speaking. I took him to his doctor, once again. He told me he was fine, that it just took some kids a little longer to speak.

At 18 months, Kaleo was still not speaking. Once again, I took him to the doctor. Told him how he didn't speak, hardly slept, wouldn't answer to his name, didn't look me in the eye. He said to give him time and wait until he was 2. I didn't agree. I took it upon myself to take him to speech therapy.

We were SO blessed to find a simply AMAZING speech therapist. She was the angel we needed. She was more than a therapist to him/us. We voiced our concerns she referred us to a developmental pediatrican.

On May 21, 2012. Kaleo was diagnosed with autism. He had turned 2 less than a month before. Hearing the word autism come out of her mouth was more than I could handle. The thing that popped in my head was 'what will become of him when I die?' the thought of him being institutionalized felt as though the wind was knocked out of me. She explained what we needed to do, what therapies he would need and gave us information on a support group. I spent most of the day crying.

The rest of the week was not much different. I immediately started making phone calls and finding out as much as I could about autism. I knew of autism, as Kaleo's cousin also has autism, but I had not experienced it on such a personal level. Once again, his speech therapist was there. Being the amazing therapist and friend. She listened to me and helped me in ways I don't think I could ever fully express.

Kaleo did not speak, would not look people in the eye, toe walked, spun his toys, would stare at the ceiling fan endlessly, would not sleep, would start screaming in crowded places, he would stim by running back and forth. He would not sleep in his crib or play pen. He preferred to sleep in his infant car seat, if I tried taking him out once he was asleep to put him in his crib he would immediately start screaming.

Kaleo was receiving speech, occuptional, physical and ABA therapy, in addition to an early interventionist that would come to the house twice a week. Slowly, Kaleo started making animal sounds, then 'cow' which gave way to him saying mama and meaning me! (although his dad doesn't let me forget that he said 'dada' first lol). Hearing him say 'mama' for the first time made my heart soar. Although the first time he said 'juice' I think really was the quintessential moment for me as it was the first time ever that he had expressed a want or need. More and more words came along, he would look people in the eyes randomly, he started playing with his toys appropriately as opposed to spinning them but with the improvements came severe meltdowns. My heart and soul were crushed when I would see him melting down on the floor, screaming and nothing seemed to help. Through ABA I learned the way to deal with his meltdowns. It taught me how to work with him when he was having a meltdown but his meltdowns continue to this day (some are more severe than others).

A few weeks before he turned 3, Kaleo had a brain MRI. In that MRI we found out Kaleo had a cyst at the base of his brain. According to the doctors it was the result of a stroke that he must've had in utero. They assumed it happened during the time I was bleeding extensively while pregnant. Once again, my world came crashing down. Why was this happening to my baby???? was it something I did??? something I didn't do???? A few months after that Kaleo was diagnosed with epilepsy, following several EEGs. He began taking Lamictal for his seizures.

Today, Kaleo speaks non stop, although at times he will still use the sign language his speech therapist taught him. He continues to toe walk but wears AFO leg braces. He's slowly becoming more social, although the first time you meet him he will hide behind me. He loves to dance and sing. He is obsessed with dinosaurs, monsters university and his iPad. His love for his sister is just as strong as ever, their bond is simply unbelievable.

Kaleo's diagnosis has resulted in us as a family becoming more involved. Leilani writes her own blog on her experience of having a brother with autism, his dad works extensively with Autism Speaks and recently became involved with Beards for Autism
I try my best to spread as much awareness as I can and I have been lucky enough to be there for others who feel or have question about their child having autism.I simply want to be there for that person who is feeling lost about their child's behavior or diagnosis. I do not consider myself a autism advocate, I am simply an advocate for both my children, one who happens to have autism. Hopefully within this blog and my future posts it will help someone else become that advocate that child needs you so desperately to be.

Testing, testing...1-2-3

Hello! And welcome!

This is my experience "down the rabbit hole" or as it's really called autism. When we began this journey two years ago I felt incredibly alone, scared and lost. I don't want any parent or caregiver to feel that way....realize you are not alone. Others who deal with autism daily will completely understand and be that shoulder to lean on that you will need at some point

I have a 12 year beautiful princess, who sometimes morphs into a grumpy tween, and a very handsome 4 year old superhero who has autism ( in addition to other medical issues ) and is absolutely hilarious. We moved from Orlando, FL to NYC in July 2013.  You will learn more about our lives through the course of this blog. . 

Here is something I wrote on November 12, 2013...it is my open letter to autism

Dear Autism,

You hovered over my life for some years before you came crashing down. I slowly saw you rear your head in the lack of my baby's words. I saw you grab hold of his hands as he sat and spun his car instead of pushing it along. I saw you try and keep his eyes from meeting mine. I saw you wrestling with him on the floor as I tried my best to calm him down during a meltdown. I thought you won the battle on May 21,2012 when the doctor said your name.

You know what, you haven't won. My son has fought and won many battles against you. He wins every single day when he expresses his needs or wants. He wins when he's able to say "vroom,vroom car" and sends it barreling across the room. He wins every time his eyes meet mine or he looks in his teacher's eyes. At times it comes naturally, sometimes prompted but either way it's always a win. He continues to fight the wrestling match between you and him, but those battles are getting shorter.

So Dear Autism, you are part of our lives. You are welcomed to stay just know your stay will be met with a fight. As you are a part of my child, this I have accepted, but I will not let you envelop him. So hang around, take a stroll with us, even lay around our home just try not to make yourself too comfy.

This one I wrote on May 21, 2014 ....two years to the day of his diagnosis

Monday, May 21, 2012 started as any other Monday. We were used to waking up,getting dressed, taking Leilani to school and then heading out to speech therapy. It was our usual schedule. After therapy we went out to lunch, it's what we usually did. In the restaurant sat his dad at one end of the booth, I sat at the other and Kaleo  sat in a high chair. It's what we usually did.....Kaleo had his usual lunch, I ordered what I usually got..so did his dad..it's what we normally would do. We left and started to make our way to Kaleo's appointment. It was our first visit with this doctor. His dad drove through streets that I hadn't traveled before. I looked out the passenger window at all the new sights. I had never been to that side of town. We drove down streets I was completely unfamiliar with.  Some seemed to have sudden curves in the road. Looking back, the symbolism is not lost on me. I remember looking back at Kaleo in his car seat and watching him spinning the wheels on his toy car as he usually would. Finally we arrived at the doctor. We got out of the car, gathered our belongings and headed into the office. We sat in the waiting room...Kaleo played with some puzzles...Nothing unusual...it's what he would always gravitate to. They called his name. I carried him into the room...nothing unusual...it's what I always did. Who would have guessed that once we exited that room, we would be completely different. Our "usual" would be gone......We sat in that room for close to two hours answering question after question. Watching the doctor put different puzzles in front of him....watching Kaleo as he tried to stack the blocks as the doctor had shown him.  Watching him quickly toe walk from one side of the room to the other. Listening to him say mama but yet never looking at me when he said it. He  simply said the word over and over. The doctor was extremely nice. She was a NYer, had practiced medicine at the same hospital Leilani was born in. I felt a connection to her, as you do when you meet someone from back home.  Shortly there after she said the words I didn't want to hear but deep down I knew. I knew they were there all along..I knew sooner or later I'd come face to face with you.  "So your question is" she said "does Kaleo have autism? The answer is yes". My heart sank, tears instantly appeared. My baby...my child!?!?!? What would happen to him when I'm gone !? How severe is it?! Will he ever speak?! Will he ever look me in the eye ?! Is my little boy gone forever!?!?!? My world seemed to come crashing down. I couldn't look at him without instantly crying. What was going to happen now. 

Fast forward two years later to May 21,2014. Our lives have changed in countless ways. Quite honestly, we are SO far from where I thought we would be. That same little boy who I thought I had lost that day was not lost at all. He's come leaps and bounds from where he was. He now says "mama" and he means me! 😄....... It's always followed by a barrage of questions or demands. They can range from "mama, where's my dinosaur toy?" to "mama, I want to eat pizza and chocolate milk". He looks me in the eye and hugs me tight. He plays with his car by rolling it on the floor instead of just spinning it's wheels. My Kaleo isn't gone. My baby is still the same wonderful, beautiful boy he has been since birth. My world is no longer crashing down. My world has just evolved. All the hopes and dreams I had for Kaleo have not been lost forever. They have simply morphed into other hopes and dreams. Our "usual" is gone and has been replaced with exceptional.

I've accepted you in my life. I've come to terms with your constant presence. I invite your eccentricities into our world. I could definitely do without your persistent sparring with my child....in fact if you could just let him win indefinitely that would be awesome. My little fighter is only getting stronger and the all engulfing grasp you once tried to have on him will only continue to get weaker. So Autism, as I've said before you're welcome to stay and hang around my Kaleo .....just know your stay will be far from a comfortable one.