Autism awareness items I have created

Parent Teacher Conference

Today was Kaleo's parent teacher meeting. I was nervous and anxious a bit. Kaleo had a rough time last year. Im sure it was a combination of moving to a new place (getting used to that), missing all the people he knew back home and getting accustomed to being in school. So last year consisted of MANY meltdowns, very defiant at times, a little aggression and A LOT of crying on both our parts. With this school year I was fully expecting a repetition of all these, however, Im so happy to say that we have not experienced any of these this year (so far). He gets on his school bus very nicely. He actually runs towards the bus when last year it was the complete opposite and there were many many times where I would have to physically pick him up and try to wrestle him into his seat on the bus. Now when the doors to the bus open he says "good morning" to the driver and bus matron, walks up the steps of the bus turns and says "bye mama i love you". He's even gone as far as to wave to me happily from his seat!!!!!!!!

However, after speaking to his OT, PT, Speech therapist and teachers I am simply gleaming with pride. I got the same comment from each and every one of them "He is the highlight of my day. I look forward to meeting with him" Each and every one of them said that to me!!!! It was such an amazing thing to hear!! They all mentioned how funny, smart and hard working he is. My little man!...the same little boy who just a couple of years ago would cry and meltdown in his therapies. The same little boy who would roll on the floor screaming and who at times I was at a total and complete loss as to how to help him.

Today was a good day. It was a day that made me see that although I might sometimes feel as if I'm not doing enough for him I've been doing something right.

Super powers? Me?

I don't have super powers because my child has autism... In fact I'm just a parent trying my best to care for both my kids. Somedays  great.... Somedays I falter but through out it all I keep trying. I don't always know the best way to handle it when my tween daughter gives me attitude or when my ASD son decides he wants to hit me. In those moments I question if I'm doing the right things for them, in what aspects have I failed. 

When he does hit me ( which isn't often..he's actually only hit me twice) I find myself at a loss. I sternly tell him " don't hit me" .....does it fall on deaf ears? Is he getting what I'm saying? Is it registering ? I don't always know. I tell him " I don't hit you, don't hit me" followed by a time out. He usually talks the whole time he's on time out....sometimes even saying he's not my friend and that he's not going to talk to me anymore. 

As always it doesn't take long for him to come and try to hug me or kiss me. Always followed by "I'm sorry mama" it's especially hard to deal with these moments alone.  I don't have anyone that I can say hey just watch them for a bit I need to just lock myself in the bathroom and cry. 

So no, I do not have super powers....I'm not one of the chosen ppl God has decided deserves a special needs child..I'm just a parent....a mom. ....trying my best. 

United States of Autism

Yesterday I watched this documentary on NetFlix, called "United States of Autism". 

It was an 1hour and 25 min of crying, smiling, feeling heart broken to optimistic. It is the story of Richard Everts cross country 40 day trek to speak to different families about their experience with autism. Richard himself has a son who has autism. The families range from very high functioning to severe autism, he even interviews some adults who also have autism. Overall, I thought it was a great film. However, during the course of the film the concept of autism being linked to vaccinations is brought up several times. I've said this repeatedly but here goes .......I, for one, DO NOT care what caused my child's autism. I don't know if vaccines were involved (that theory has been debunked by the medical community) with that being said is there a slight fear when he gets new vaccinations ....Absolutely! I do not know if he has autism because of a genetic connection, I do not know if something in the environment caused it.....hell maybe I held him a little too tightly as a newborn...maybe I gave him a little too much banana baby food or peach or strawberries or whatever. All I know is that my child has autism now. That I need to deal with the now and beyond not the was. If something did cause his autism...well unfortunately I don't own a time machine ala Bill and Ted's ( like my random 80s reference?) and cannot go back in time and change anything.  So why should I invest my energy in that? When my energy is needed for so much more. It's a film I believe every parent who has a child with autism should see. Sometimes or many times as an autism parent we feel alone, just a solitary woman or man fighting against autism. This film shows how diverse and how many families are affected by it. It's also a film I think people who don't have kids with autism or don't know someone with autism should definitely watch...probably more so than those who do. It will raise awareness and you will gain knowledge to something that is becoming an all too real issue in the world. Autism rates are growing exponentially,  it's not going away .... It's time for people to educate themselves with knowledge and compassion. 

Just last week I went to see a specialist for myself. It was my first time seeing her. During the initial getting to know you process of the appointment she asked me what I did for a living. I explained to her that I'm a stay at home mom, who has a 12 yr old daughter and a 4 yr old special needs son. She then asked me what did my son have.  I explained to her he has autism, epilepsy and an arachnoid cyst. Her response was "oh, I'm sorry ". I found myself at a loss for words at that moment. I had never had anyone say that to me when talking about Kaleo. Was that an appropriate reaction from her?  Should I have been thankful for it ? Or should I have been insulted?  Is that a correct reaction and response I should expect from people? More importantly what's wrong with me for not even being sure how I should feel about it lol. 

                                 My Star shine ☀️☀️☀️

Under the waves....

It's been a really long time since I have written anything. I've just been so busy with the kids, myself and just daily running around.

Leilani finished school and is officially on summer break. She started swimming class this week and is really enjoying it.  Kaleo has year round school, so he won't be done until mid-August...then he gets a two week break. Hoping to be able to surprise the kids with a little vacation during that time...but that's still up in the air. 

Kaleo's medical appointments are still as plentiful as ever. His seizure meds were increased a couple of weeks ago. Hoping to get to the correct dosage to control his seizures. Another 24 hr EEG will be repeated in August. They are trying to figure out if his Arachnoid brain cyst is in anyway related to his seizures. 

The white area at the rear of the skull is the cyst

 Another view..it's the black area at the base of the skull. 

We did not know about this cyst up until a year ago. It's something Kaleo was born with and the doctors feel that it was caused by a stroke that he must've had in utero. It's just another thing added to his ever growing list of medical issues. 

On Monday he went to see his orthopedic doc. He decided on three more months of using the AFOs and then surgery. Luckily, wearing his leg braces as not been an issue at all..he actually really enjoys wearing his "superhero legs" as he calls them. He says they give him super powers. He says the same about his medical alert bracelet. Although sometimes he gets overwhelmed and at those times he will say to take off his superpowers because they're too strong.

As always we continue to take one day at a time and enjoy all the beautiful unpredictable moments. 

Ever felt unwanted?

Today I came across this article Child asked to leave restaurant over facial scars from dog attack

It took me back to a situation we experienced a few months prior to Kaleo's diagnosis. We had to attend a meeting at Leilani's school regarding the upcoming statewide exams. The meeting was held in her classroom and was full of parents. We took our seats and Kaleo who was about 15-16 months sat in his stroller and was babbling to himself-he was nonverbal at that point. We were there about half an hour before we were asked to leave because Kaleo was "talking" too much. I will repeat my prior statement- he was nonverbal at that point. We were confused, taken aback and frankly hurt by the actions of her teacher. That same night I wrote her an email

Her teacher did not respond to this email...I then followed up with another email telling her I wanted to have a meeting with her. She eventually did respond and we set up a date to meet. When I showed up to the meeting the assistant principal joined us. Long story short..they both apologized for what happened. I made sure to let them know that the actions of the teacher were highly unprofessional. I told her if she had the secret as to how tell a toddler to be quiet and have them fully comply then she should let the rest of us in on the secret. Again, this was prior to Kaleo's diagnosis but I already knew something was going on with him.

I continue to experience the stares and unsolicited advice from people when Kaleo is having a meltdown. I've become accustomed to it and it doesn't phase me anymore. With that being said this experience on 1/26/12 was the first and last time I have left somewhere because Kaleo was being seen as a nuisance. I refuse to ever be made to feel that way and more importantly have my child ever be made to feel that. Autism rates in the United States are now 1 in 68 children. Awareness, acceptance and compassion need to become part of the human psyche.

A couple of months before that school year ended, Leilani's teacher announced she was pregnant with her first child. I've often wondered if she ever felt what I did that night or if she has ever felt as if her child wasn't wanted.

This is an example of typical babbling Kaleo did at that time

*******Warning. This might be a controversial post******

*******Warning. This might be a controversial post******

So Kaleo was diagnosed a couple of weeks after turning 2. During that fateful visit I asked the doctor where on the spectrum he fell. She couldn't answer me. Instead she said "time will tell". Kaleo is now four and has had countless therapy sessions. He's extremely verbal now which is completely the opposite of where he was when diagnosed. Today during his neurology appointment I again found myself asking the doctor if she would be able to tell me where on the spectrum he is. Once again I heard "time will tell". She said that he's so verbal, he can sit nicely and play w a toy, he makes pretty good eye contact and interacts extremely well with her. All these signs she says are good ones. They're signs for me to be optimistic about him long term. Signs that he might possibly be able to manage his autism as he gets older. 

Now I say this is a controversial post because I see many people on autism forums claim their child has Aspergers or how they are awaiting a diagnosis but that the doc is leaning towards Aspergers. During their posts they seem to try and separate themselves from the rest of the group by using the term Aspergers. As if it is easier to accept or easier to deal with if your child is higher functioning and the rest of the poor souls who have to deal with a child who is simply "autistic" is someone they're not connected to or in the same boat shall we say.

Autism is referred to as a spectrum for simply that reason. So many different levels or degrees of autism fall within that spectrum. All under the autism umbrella.  So your child having Aspergers or potentially having Aspergers doesn't make it an easier pill to swallow.
OH you say your child doesn't really speak, stims constantly, will not interact with others, prefers to be in his/her own world, and won't look you in the eye ? But yet the doc is leaning towards an Aspergers diagnosis? And your doctor isn't saying "time will tell". 

Do I need a better doctor or do you?

A-DOR-AB-LE

A picture of Kaleo waiting for the school bus this morning. I'm sharing it simply because I find him adorable!!!

Sick, sick and more sick

Sorry I haven't been able to update the blog in awhile. I've been superrr busy with Kaleo. Last Thursday his teacher called me and said that he wasn't acting like his usual self. He was very lethargic all day and did not want to participate. When he came home from school he quickly fell asleep ....that was the flashing neon sign letting me know that he really was sick. On Friday I took him to the doctor with a fever, vomiting and diarrhea. I was told to just give him a few days. I took him to the ER Sunday night because his fever was very high and since he was hardly drinking anything, if he did it would quickly come back up and I have to dissolve his seizure meds in his drink. I was very worried about him having a breakthrough seizure. They told me that it was a stomach virus and give it a few days.

On Wednesday he was exactly the same no improvement. So I took him back to his doctor.  They immediately gave him an IV since it had been days since he had eaten or drank anything. Thankfully two bags of fluids later he was feeling better!!

       

On Saturday we went to his special needs music, dance and art classes. He had a rough time in the beginning. He kept saying " I'm scared of the gym" but I was able to coax him into the room. He grabbed his dinosaur and was able to attend the classes. He pretty much would roar whenever he was asked a question ( that's his go to move whenever he's anxious. He roars like the dinosaurs he's so obsessed with) but he participated!!!

Coincidentally that same day was the annual Make 'm Smile event hosted by Nathaniel's Hope. We would attend every year and it was always a great time. This year we are not there. I feel sad that we missed out on such a special event. Times like these I wish we hadn't left Florida but there's so many reasons why NYC is better for us. I just miss attending events such as Make 'M Smile and the Autism Speaks walk. NYC had a AS walk but it was in Queens and commuting is not as easy as it would've been for us in Orlando. I could quickly jump in our car and drive to wherever I had to go but in NYC Kaleo is not used to taking the trains. Cab service can be pretty expensive. Hopefully we will find some event similar to these in the city.

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.