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.