20-some years ago, my cousin was diagnosed with Autism. I remember when I first heard. I asked my mom, what's that? She said she didn't know. I don't think any of us really did. It wasn't like now where you can just Google anything. There was no research available for us to do on our own. His mom and I are the same age and at the time she was living so far away from our very large family. I can't even image what it was like going through it all that far away from home. And now here we are, 20-some years later and still no concrete known cause or cure. And it continues to grow with more and more diagnosed every year. And those of us that are caregivers continue to press through, aimlessly as it feels at times. Even with all the progress in treatments, it seems like we're still so far from seeing the end of Autism as we know it. So we keep doing what we're doing to make living with Autism "livable". ‪#‎AutismAwareness‬ ‪#‎ThisIsOurNormal‬

Middle school... bleh

A few weeks ago we had parent/teacher conference for 'Milo. Overall, the teacher had a pretty good report for him. He said he is doing well in Math and has made real improvement in his spelling words (heck yeah, we worked HARD on that one!). He did say he needs to improve his reading. He does read everyday, so we just need to get his reading speed up. He also said although 'Milo qualifies for Summer School, he didn't feel that he was in any real need for it. I'll have to admit, I agree with this one. Last year, the Summer School teach he had never sent home any homework. And the work I did see, was review of past grades and not much of his current grade. The teacher said he didn't have any concerns for 'Milo regressing over the summer. So this will be his first summer off... aside from the work sheets I'll leave for him to do during the day.
Then the dreaded topic came up: Middle School. I can't believe it's that time.
The teacher had the school 'Milo has been assigned to. The school has an all-Aut program; some school Special Ed programs consists of ALL disabilities. He explained that he would be assigned 4 classes; Math, Social Studies, History, Language Arts. Then he will have a home room, an elective and PE. That's when my stomach dropped. PE. I hadn't even thought about that. Changing in a gym locker room with other boys. Will he remember to put away his clothes/glasses/shoes in his locker? Will he remember his locker combination? Will he be picked on by other kids if he can't get the instructions down during PE? So many things go through my head that make me want to quit my job and go to the school everyday to keep him safe and protected. Obviously that is not an option. But I've had this sick pain from worry in my stomach since then. ‪#‎AutismMom‬ ‪#‎ThingsThatKeepMeUpAtNight‬

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."

32 people reached

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.

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 :)

Things about Autism you may not know

A friend of mine asked me today, "Seems that it [Autism] affects more kids than cancer, is that correct?"  My answer to her may shock you.  Did you know...
This year, more children will be diagnosed with autism spectrum disorder than AIDS, diabetes and cancer combined.
I know, right?!
**Autism now affects 1 in 88 children and 1 in 54 boys.  That means more kids on the spectrum compared to type 1 diabetes – 1 in 400; childhood cancer – 1 in 2,000; and cystic fibrosis – 1 in 3,500.  Yet Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
It 2012 the total NIH (National Institutes of Health Funds Allocation) budget was $30.86 billion.  Of this, only $169 million goes directly to autism research. This represents 0.55% of total NIH funding!!
Autism prevalence figures are growing.  

• It is the fastest-growing serious developmental disability in the U.S.  
• It costs a family $60,000 a year on average.  
• Boys are nearly five times more likely than girls to have autism.  
• There is no medical detection or cure for autism**

When asked what my thoughts are on what causes Autism, I say this; to me, the cause is irrelevant because it will not change his diagnosis.  I have my theories (vaccines is not one I believe), but something definitely needs to be done to prevent more children and families from being diagnosed.  What I need to see at this point is a cure, but with funding so low, how will we ever see the day Autism is cured or prevented.  This is why AWARENESS is so important.  And this means kids too!!  Kids need to be aware and taught tolerance, compassion, patience and understanding.  Because MY kids will grow up with neurotypical kids.  And so will many more kids on the spectrum.

**resource:  Autism Speaks website

Don't be a bully!

This appeared on my FB feed today.  It is from the Autism Speaks FB page:  "Unfortunately, 60% of children with special needs experience severe bullying. We’re proud to be part of the community promoting the new documentary film Bully to raise awareness about how bullying affects children with special needs, like autism. Check out specialneeds.thebullyproject.com to learn more, and find out what you can do to help our children live in a bully free world."

I would be lying if I said I don't worry about this.  I really do.  I've seen how other kids, even some of his own cousins, look annoyed with him.  They don't understand his way and will tell him to "shut up" or give him a look.  It breaks my heart.  But I stay calm and just remove him from the situation.  Thankfully he's not aware that their words are action are insensitive.  One day he may, and I will be there for him. But you can help!  PLEASE educate your children. We can't be with them 24/7 to protect then or to make sure they do the right thing.  All we can do is give them the tools and the guidance to make good decisions when we're not around.

Here are some more articles on this subject:

http://www.cbsnews.com/8301-204_162-57406540/survey-finds-63-of-children-with-autism-bullied/

http://www.huffingtonpost.com/2012/03/28/autism-bully-aspberger_n_1385603.html

http://www.livescience.com/19304-bullying-autism-asperger.html

http://www.disabilityscoop.com/2012/03/26/kids-autism-bullied/15242/

When it all changed..

Little E.  He was always such a happy baby.  Full of smiles all the time.  He seemed to hit his milestone right on mark, if not sooner.  Sitting up and crawling before 6 months, walking before his first birthday.  Except for talking.  At 2 he still was not talking, just using hand gesture and making sounds.  But it got to the point where we would start banging his head on the floor and having tantrums.  Inconsolable.  We didn't know what to do.  At his 2 year check up, his pediatrician referred us to Regional Center.  She said they have programs that could help.  At least we had some direction.  I am so thankful that she suggested this.  We did start teaching him Sign Language and this did help is tantrums and head banging.  I honestly think he was just frustrated that he could not communicate with us.  Couldn't say he thirsty or tell us what he wanted to drink, or that he was hungry or wanted something.  Sign Language was a turning point.  He was now at least able to communicate so that was a relief for all of us.  By this time we were able to get an evaluation going for Regional Center and that was such a blessing.  They determined that he would need Early Intervention, Speech Therapy and OT (Occupational Therapy).  This was no easy task and it was a lengthy process.  A series of tests and interviews, forms to fill out, question after question.  But you know, when it's your child, you do it.  All of it.  What could be more important than your child's future.  It is definitely a commitment that will shape the development of your child and is not to be taken lightly.  They people they have for these services are AMAZING!  I don't know how they do it.  They work for you and with you.  They come to your house morning, afternoon, night, weekends, whatever you need.  They realize that people have work and personal commitments.  They work around you and your schedule.  They are overloaded with work due to a shortage of specialist in their fields.  But they get it done without complaint.  I can't imagine what it is like now that Autism is one the rise.  It is incredible the work that are expected to do and get done.  And this has only just begun...

He's perfect!

Little E

D and E.  My loves of my life

10 fingers, 10 toes…that's all you really worry about right.  What more could a parent ask for.  He seems normal, looks normal, he's healthy.  Perfect in every way.  Sight on scene, there would be nothing to indicate to you that your child will be diagnosed with Autism.  1 in 110?  No, that number just went down to 1 in 88.  But when you think about it, who doesn't have Autistic tendencies?  Still not the same growing up in a world where you are subjected to tests, evaluations… people, including family members, asking you, "what's wrong with him?"  What the hell does that mean?  That used to make me so made… still does.  "He's Autistic; what’s your excuse?" is what I wanted to say.  People can be so mean without even knowing it.  It's called ignorance with a dash of denial.  The world hasn't changed people.  Autism has existed for many years, you just didn't realize it.  I don't have time for the how's and why's, I just need to do for my son now.  What will help him in his daily life?  How can I help him to grow into an independent person of this society?  It's what I want for both my boys.  It's a big scary world out there.  But we'll get thru it.