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?!