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.

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.