The story behind World Autism Awareness Day

I was listening to Autism Live a couple of weeks ago and Shannon explained how World Autism Awareness Day came to be. I found it really interesting that is was implemented by the United Nations who UNANIMOUSLY declared April 2 as the day. Here is the decoration from the United Nations web site:
"The United Nations General Assembly unanimously declared 2 April as World Autism Awareness Day to highlight the need to help improve the quality of life of children and adults, who are affected by autism, so they can lead full and meaningful lives."
"World Autism Awareness Day
The General Assembly Recalling the 2005 World Summit Outcome
and the United Nations Millennium Declaration, as well as the outcomes of the major United Nations conferences and summits in the economic, social and related fields, Recalling also the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, according to which children with disabilities should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community, as well as the full enjoyment of all human rights and fundamental freedoms on an equal basis with other children, Affirming that ensuring and promoting the full realization of all human rights and fundamental freedoms for all persons with disabilities is critical to achieving internationally agreed development goals, Aware that autism is a lifelong developmental disability that manifests itself during the first three years of life and results from a neurological disorder that affects the functioning of the brain, mostly affecting children in many countries irrespective of gender, race or socio-economic status, and characterized by impairments in social interaction, problems with verbal and non-verbal communication and restricted, repetitive behaviour, interests and activities, Deeply concerned by the prevalence and high rate of autism in children in all regions of the world and the consequent development challenges to long-term health care, education, training and intervention programmes undertaken by Governments,
non-governmental organizations and the private sector, as well as its tremendous impact on children, their families, communities and societies,
Recalling that early diagnosis and appropriate research and interventions are vital to the growth and development of the individual,
1. Decides to designate 2 April as World Autism Awareness Day, to be observed every year beginning in 2008;
2. Invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Autism Awareness Day in an appropriate manner, in order to raise public awareness of autism;
3. Encourages Member States to take measures to raise awareness throughout society, including at the family level, regarding children with autism;
4. Requests the Secretary-General to bring the present resolution to the attention of all Member States and United Nations organizations."

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A Note of Thanks

To the nice nurse who helped treat 'Milo in the ER last night, THANK YOU!

It all started with a call from the school that 'Milo was coughing and coughing and needed his inhaler.  His asthma was acting up again.  The second time in two weeks.  So I got to the school with his inhaler and decided to take him to his doctor.  The inhaler seemed to be doing it's job while we waited.  She saw him, checked is vitals and he seemed to be doing good.  We got him some new inhalers and went home.  Everything seemed fine. 

11:30pm came around and the coughing began again.  I could hear the wheezing, and shortness of breath.  Not again!!  My poor little guy.  I hate to see him going thru this.  I didn't want to take a chance, so off to the ER we went.  It was unusually light at the ER; only a few people were in the waiting room.  I checked him in and they wasted no time and took him in right away.  He got settled on a gurney and the doctor came in to give him a quick check.  It was clear his breathing was not well.  He ordered a breathing treatment, check for flu, X-Ray, blood work and IV then went on his way so they could get started.  It was then that our nurse came in.  She listened to his breathing and let him listen too.  He was amazed by this. She was very nice and explained everything very thoroughly.  She then came in and gave him a stethoscope of his very own.  His face lite up.  It was time to get started.  They put a mask on him to start the breathing treatment and the nurse told him, "we need to take some of your blood now".  He began to make those squealy, whimpering noises he makes when I know he's uncomfortable or scared about a situation.  She started to say to him, "come on, you're a big boy, don't be like that", but quickly realized he was not like other 10 year olds that she' probably treated before.  Her tone was stern, but quickly pulled back into a softer tone.  It was obvious he was overwhelmed.   He had this mask on blowing medication into his face and people there waiting around to take test after test.  She had all the commotion stop so she could explain to him what was going on.  She explained the blood work and how being calm and breathing normally would make it quick and painless.  He listened to her and when he was ready they took his blood.  She told him, "I am so proud of you!  You did so great!"  Next it was time for the IV.  She explained it all to him, let him touch everything before she did anything.  again he was calm and the IV was placed.  I told him he was a better patient than me!  She took the IV pouch and showed him how to start the drip and she let him do that too.  She gave him a scan gun and let him scan his wrist band and all the medications.  She told him he was her best patient that day.  I was so happy that she was able to keep him relaxed and calm.  As they finished up all of his tests, her shift was ending.  She came in to tell him she would be leaving and thanked him for being so great and how proud she was of him.  He was smiling and happy and told her to have a good night.  I'm so thankful for the care she gave 'Milo.  It certainly made things a lot less stressful, for both of us!  As we sat and waited for his test results he was wide awake, so he watched Minecraft videos to past the time.  Around 2:30 the doctor came in to check his breathing again and was pleased it was better.  He also told us that all of the tests came back normal and was ready to discharge.  We got back home at 3am.  He excitedly told Grammy how brave he was and what a big boy he was and proudly told her he didn't cry.  All because of one very special nurse :)

Halloween fun!

Another Halloween has come to an end.  The boys get more excited every new year and thankfully 'Milo can handle it.  He's always done well and we've always taken him trick-or-treating.  Some of the costume are a little scary for him, but he's he does OK.  I see him get a little frighten, but a little excited at the same time.  It's a good 'ol healthy dose without being overwhelming.  But last night, for the first time, I could see the excitement wear off his face.  He started to be come quiet, looking around in the darkness.  Staring at people.  Even the unicorn mask I wore lost it's luster to him, even though he had bee so amused by it when we left the house.  When we started off, it was still a bit light, but the overcast sky brought the night on much quicker.  And the area we walk literally had no street lights.  It was quite a busy and long day.  Both kids were pretty tired by 7:15, but 'Milo's eyes were big and on the verge of teary.  I said "are you all done son?"  He said "yes" in a very tiny voice.  "OK, let go" I said, and home we went. 

When we got to the house and it was time to go with dad, 'Milo said, "I'm gonna miss you".  I said "dad is going to protect you and keep you safe just like I would".  I think he was stressed so I'm glad we stopped when we did.  I gave him a hug and a kiss and reminded me I would see him at his soccer game the next day.  I'm glad he can enjoy the holiday like other kids...at least for a while :) 

Wins! I'll take 'em where I can :)

Busy schedule lately that I haven't had too much time to post.  Halloween is on the rise so excitement is in the air :)  Plus both boys are playing soccer again this season (both teams are undefeated so far :) yay) so we're usually out on the field 5-6 days a week.  Makes for one tired mama!  Once the kids go to bed, that's usually my time to do my research, catch up on some of my fav TV shows, prepare for the next day and just plain relax.  But even in those last few hours of the day, I'm having a hard time staying up just from being exhausted!  My mom had some surgery too recently so our household is a bit topsy-turvy lately. 
But I do have an update on 'Milo!  We had an IEP meeting on Friday.  Not a full meeting, but just an meeting to say they were going to exit 'Milo from Speech and OT.  This is something that was brought up in his last IEP, by me and 'Milo's dad.  We agreed that we felt it was time.  He has made a lot of progress over the last couple of years in both area.  Personally I feel the sports helped a lot.  So they school said they would do an assessment to be sure this was the right decision.  They said he passed with flying colors in both area and felt that he did indeed had made progress.  I'm glad that he will now have more academic time; after all Jr High is right around the corner!  Trying to get him up to speed on his multiplication table has been tough, but he's got most of them down!  I will randomly ask him throughout the day and he'll get them right 99% of the time.  And spelling words... well, now that I've found a method that works for him, he no longer come home with a spelling test where he got them all wrong!  He gets 100%s now, or at the most only 4 wrong.  This was a huge struggle, but as I've said before, find what works and go with it!  So lots of fun stuff going on and we'll continue to strive for more wins in our world with Autism.

Best quote of the day: "I want to touch everything!"

Most little boys love trains.  But there are many kids on the spectrum that have a similar fondness for them.  For my son, he use to love to watch the wheels turn.  Thomas was always the favorite.  We even had his first birthday party at Travel Town; a train museum in Los Angeles.  Was the really 10 years ago!!??  <sniff, tear> We went to visit Travel Town today and it is just as popular with kids as ever.  My kids always loved this place and that was no different today.  They were so excited that I even let them ride the train around the park all by themselves for the first time.  And they got seats right in front.  
'Milo had always been so sensitive about his hands.  He didn't like them dirty or sticky, but more so than just typical kids.  He reacted like it was burning his skin.  But over the years, with OT and therapy that he has had since the wee age of 2, it has really helped to relieve the anxiety he had about it.  So today when he exclaimed, "I want to touch everything!" I had a moment where I stopped and thought, "oh that's right!  he never did that before".  Watching him opening flaps and moving levers and not worried about the dirt on his hand and not SMELLING his hands after touching something!!  I mean wow, really.  Even as I write this I realize, he didn't smell his hands once!  This is really only in the last month and a half of ABA and he's already stopped smelling things. 

One might say, what's the big deal about smelling things.  Well, let me ask you this; as an adult, if another adult shook your hand and smelled their hand after, what would you think?  It's just not a socially acceptable behavior.  This is a life skill that most people don't have to be taught.  It's little things like this that people don't realize.  There is constant teaching when you have a child with Autism.  Today made me realize all the blood, sweat, are tears you put into helping your child it so worth it when you see what's been accomplished.  I appreciate all he has become so much.

Yesterday started off with a bang...

I was not good as you can see from the post I wrote on our FB page:

"Today I hate autism. I hate the challenging behaviors it gives my son. It's not his fault, it's the autism. I hate that I have those moments where I just need to close the door and scream! It's not my fault, it's the autism. I hate that it can ruin a moment in time for my family. It's not our fault, it's the autism. I hate that people who have not experienced autism first hand can be quick to judge. It's not their fault, it's the autism. I hate that at times I feel like I'm the only one that gets me, when there are thousands of autism parents having that same feeling. It's not our fault, it's the autism.
There are times that I love what autism has taught me. I love that other autism parents support each other. I love when I can share a suggestion that works for another parent and they are so appreciative. I love that ah-ha! moment when I figure out that one thing that helps my son "get it".
But today, I hate autism"

Autism and my Nuro-typical child

I have a son who is going to be 8 soon.  He has a brother who is Autistic.  He can be is brothers best role model and worst critic.  He is impatient at times, and that's understandable, but no one can deny how much he loves his big brother.  We started ABA a few weeks ago and have been having some good session.  But on July 3, things got rough as I described in my posts on our FB and G+ pages.  In the hour and a half that my older son was having his meltdown, D was in his room playing with the iPad and waiting for the calm.  He has seen these episodes in the past and has been in tears over it.  I feel bad for him when this happens.  Not only because he's obviously overcome with emotion but because at these times, I have all my focus on my older son.  But that is the least of his worries from what I can tell.  Aside from the gut wrenching screams that are definitely unnerving, he will say to me he was upset by what 'Milo saying (usually calling me names), or that he was hitting me or hurting himself (banging his head on walls or scratching his face)  Or he was upset that 'Milo was throwing things or knocking over furniture.  I'll admit, the older he gets, the stronger he is... and well, the older I get, not as strong as I used to be I guess, but at least for now, I can still overpower him so there isn't too much damage.  But Thursday it was evident that 'Milo had actually physically left me with some marks.  Honestly I've grown a thick skin to this.  I take none of it personally.  In fact, when every last bit of his outburst is over with, he'll sit quietly for a bit an out of nowhere he back to just being 'Milo.  He will tell me sorry for "being crazy" and give me hugs a kisses, the go on as if nothing had happened.  It's like someone flipped a switch. 

When my younger son saw this he said, "Did 'Milo do that to you!?"  I said, "yeah, but I'm OK".  He didn't respond.  The next day he saw my arms again and said "I don't like seeing these marks on you...when are they going away?"  I said, "hopefully soon".  Then today, 'Milo went over to grammy's for the night...honestly, I think she just likes to give me a "break" now and the, bit also to give me and D some one-on-one time.  Seriously, he deserves it.  I asked him what wanted for dinner and he said pizza.  I said "oh, you want to go to Pieology?", he said "no, just here".  So we went to the store, got a pizza, brought it home and sat and ate.  As we bit into our first slice, he put his hand out for mine, and held my hand...as we sat and had pizza... just the two of us :)