April is Autism Awareness Month.......

Since today is the first day of Autism Awareness Month; I thought I would start it off with the signs and symptoms of Autism found from the CDC website: http://www.cdc.gov/ncbddd/autism/signs.html

Signs and Symptoms

Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.  People with ASDs handle information in their brain differently than other people.
ASDs are "spectrum disorders."  That means ASDs affect each person in different ways, and can range from very mild to severe.  People with ASDs share some similar symptoms, such as problems with social interaction.  But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.
 

Example of Range of Symptoms

Following the chart below - a person might have average intelligence, have little interest in other people, use limited verbal language, experience intense self-stimulatory behaviors such as hand-flapping, under-react to pain and over-react to sounds, have very good gross motor skills, and have weaknesses in fine motor skills. These syptoms may vary widely from person to person.

ASDs begin before the age of 3 and last throughout a person's life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms may not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had. Studies have shown that one third to half of parents of children with an ASD noticed a problem before their child’s first birthday, and nearly 80%–90% saw problems by 24 months of age.
It is important to note that some people without an ASD might also have some of these symptoms. But for people with an ASD, the impairments make life very challenging.

Possible "Red Flags"

A person with an ASD might:

• Not respond to their name by 12 months of age
• Not point at objects to show interest (point at an airplane flying over) by 14 months
• Not play "pretend" games (pretend to "feed" a doll) by 18 months
• Avoid eye contact and want to be alone
• Have trouble understanding other people's feelings or talking about their own feelings
• Have delayed speech and language skills
• Repeat words or phrases over and over (echolalia)
• Give unrelated answers to questions
• Get upset by minor changes
• Have obsessive interests
• Flap their hands, rock their body, or spin in circles
• Have unusual reactions to the way things sound, smell, taste, look, or feel

Social Skills

Social issues are one of the most common symptoms in all of the types of ASD.  People with an ASD do not have just social "difficulties" like shyness. The social issues they have cause serious problems in everyday life.
Examples of social issues related to ASDs:

• Does not respond to name by 12 months of age
• Avoids eye-contact 
• Prefers to play alone
• Does not share interests with others
• Only interacts to achieve a desired goal
• Has flat or inappropriate facial expressions
• Does not understand personal space boundaries
• Avoids or resists physical contact
• Is not comforted by others during distress
• Has trouble understanding other people's feelings or talking about own feelings
  
  

Typical infants are very interested in the world and people around them. By the first birthday, a typical toddler interacts with others by looking people in the eye, copying words and actions, and using simple gestures such as clapping and waving "bye bye".  Typical toddlers also show interests in social games like peek-a-boo and pat-a-cake.  But a young child with an ASD might have a very hard time learning to interact with other people.
Some people with an ASD might not be interested in other people at all. Others might want friends, but not understand how to develop friendships. Many children with an ASD have a very hard time learning to take turns and share—much more so than other children. This can make other children not want to play with them.
People with an ASD might have problems with showing or talking about their feelings. They might also have trouble understanding other people's feelings. Many people with an ASD are very sensitive to being touched and might not want to be held or cuddled. Self-stimulatory behaviors (e.g., flapping arms over and over) are common among people with an ASD.  Anxiety and depression also affect some people with an ASD. All of these symptoms can make other social problems even harder to manage.
 

Communication

Each person with an ASD has different communication skills. Some people can speak well. Others can’t speak at all or only very little. About 40% of children with an ASD do not talk at all. About 25%–30% of children with an ASD have some words at 12 to 18 months of age and then lose them.¹ Others might speak, but not until later in childhood.
Examples of communication issues related to ASDs:

• Delayed speech and language skills
• Repeats words or phrases over and over (echolalia)
• Reverses pronouns (e.g., says "me" instead of "I")
• Gives unrelated answers to questions
• Does not point or respond to pointing
• Uses few or no gestures (e.g., does not wave goodbye)
• Talks in a flat, robot-like, or sing-song voice
• Does not pretend in play (e.g., does not pretend to "feed" a doll)
• Does not understand jokes, sarcasm, or teasing
  
  

People with an ASD who do speak might use language in unusual ways. They might not be able to put words into real sentences. Some people with an ASD say only one word at a time. Others repeat the same words or phrases over and over. Some children repeat what others say, a condition called echolalia. The repeated words might be said right away or at a later time. For example, if you ask someone with an ASD, "Do you want some juice?" he or she might repeat "Do you want some juice?" instead of answering your question.  Although many children without an ASD go through a stage where they repeat what they hear, it normally passes by three years of age. Some people with an ASD can speak well but might have a hard time listening to what other people say.
People with an ASD might have a hard time using and understanding gestures, body language, or tone of voice. For example, people with an ASD might not understand what it means to wave goodbye. Facial expressions, movements, and gestures may not match what they are saying. For instance, people with an ASD might smile while saying something sad.
People with an ASD might say "I" when they mean "you," or vice versa. Their voices might sound flat, robot-like, or high-pitched. People with an ASD might stand too close to the person they are talking to, or might stick with one topic of conversation for too long. They might talk a lot about something they really like, rather than have a back-and-forth conversation with someone. Some children with fairly good language skills speak like little adults, failing to pick up on the "kid-speak" that is common with other children.

Unusual Interests and Behaviors

Many people with an ASD have unusual interest or behaviors.
Examples of unusual interests and behaviors related to ASDs:

• Lines up toys or other objects
• Plays with toys the same way every time
• Likes parts of objects (e.g., wheels)
• Is very organized
• Gets upset by minor changes
• Has obsessive interests
• Has to follow certain routines
• Flaps hands, rocks body, or spins self in circles
  
  

Repetitive motions are actions repeated over and over again. They can involve one part of the body or the entire body or even an object or toy. For instance, people with an ASD might spend a lot of time repeatedly flapping their arms or rocking from side to side. They might repeatedly turn a light on and off or spin the wheels of a toy car. These types of activities are known as self-stimulation or "stimming."
People with an ASD often thrive on routine. A change in the normal pattern of the day—like a stop on the way home from school—can be very upsetting to people with an ASD. They might "lose control" and have a "melt down" or tantrum, especially if in a strange place.
Some people with an ASD also may develop routines that might seem unusual or unnecessary. For example, a person might try to look in every window he or she walks by a building or might always want to watch a video from beginning to end, including the previews and the credits. Not being allowed to do these types of routines might cause severe frustration and tantrums.

Other Symptoms

Some people with an ASD have other symptoms. These might include:

• Hyperactivity  (very active)
• Impulsivity (acting without thinking)
• Short attention span
• Aggression
• Causing self injury
• Temper tantrums
• Unusual eating and sleeping habits
• Unusual mood or emotional reactions
• Lack of fear or more fear than expected
• Unusual reactions to the way things sound, smell, taste, look, or feel
  
  

People with an ASD might have unusual responses to touch, smell, sounds, sights, and taste, and feel.  For example, they might over- or under-react to pain or to a loud noise. They might have abnormal eating habits. For instance, some people with an ASD limit their diet to only a few foods.  Others might eat nonfood items like dirt or rocks (this is called pica). They might also have issues like chronic constipation or diarrhea. 
People with an ASD might have odd sleeping habits. They also might have abnormal moods or emotional reactions. For instance, they might laugh or cry at unusual times or show no emotional response at times you would expect one. In addition, they might not be afraid of dangerous things, and they could be fearful of harmless objects or events.

Development

Children with an ASD develop at different rates in different areas. They may have delays in language, social, and learning skills, while their ability to walk and move around are about the same as other children their age. They might be very good at putting puzzles together or solving computer problems, but they might have trouble with social activities like talking or making friends. Children with an ASD might also learn a hard skill before they learn an easy one.  For example, a child might be able to read long words but not be able to tell you what sound a "b" makes.
Children develop at their own pace, so it can be difficult to tell exactly when a child will learn a particular skill. But, there are age-specific developmental milestones used to measure a child’s social and emotional progress in the first few years of life. To learn more about developmental milestones, visit "Learn the Signs. Act Early," a campaign designed by CDC and a coalition of partners to teach parents, health care professionals, and child care providers about early childhood development, including possible "red flags" for autism spectrum disorders.

  I am also posting Nick's results from his ADOS evaluation back in 2006 HERE.It will give you an idea of what a developmental pediatrician sees, as well as what we as the parents informed them of. His evaluation took about 3 hours and we saw a team of specialists during that time.

Happy Napper......

Nana sent the boys a box full of goodies today, and they were pleasantly surprised when they came home from school. This is the end result. Nick fell in love with this "Happy Napper" and gave it a good sniff before he twirled it around and around. He figured out how to get it to play the song, so then it was flingworthy AND entertaining!

Autism Awareness.......

Are you aware of what happens in seven days? April is Autism Awareness Month. April 2nd is World Autism Awareness Day. I am not sure what things I am going to do this month regarding autism awareness, but I will try to post something related to it every week. Maybe the first week I will do signs and symptoms, second week therapies, etc. The point is we need to get awareness out there. Leaving with a song from Phil Collins that I love. It was not written for autism, but the words fit almost perfectly. I think Nick views a lot of people as "Strangers....Like Me" If you listen to the lyrics closely you will understand.

Best News of the Week!

Ever since we took the boys out of the previous school district last Friday, we have been waiting with bated breath as to where Nick would be placed. In the previous they sent him to the Elizabeth Lee Black school at the Barber National Institute; which is where we wanted him to go ever since we first saw the school on the internet. The two weeks he was there were fantastic! We got reports daily of how he was doing, what he ate, if he had any meltdowns, etc. But, since we were in a different district now, there was the chance that he would not attend that school-since he has to be referred there by the school district. I have been calling the new school district as well as Barber everyday this week to see what was going on. As of this morning at 10am they was still waiting on paperwork. I called his caseworker this morning and I am sure she could sense my frustration with the whole process being so slow. "It can take a few days for all the paperwork to get done. Just keep calling; you are doing the right things..."

I had to go to the store and get some more bread anyway, and it kind of took my mind off things for a little while. I grabbed the keys, said goodbyes, and off I went. When I got back, I started unloading everything and making Nick some lunch. Around 11:30 the phone rang. I knew who it was by the number...our caseworker.
Her first words were "I got some good news for you!" "Nick can start back here tomorrow morning!" OMG! That was a huge weight lifted off my shoulders. Mike said he never doubted Nick would stay at Barber; but until I heard the confirmation, there was always a chance they could say No. But, they have said Yes. It was a victory today. I went over to Nick; told him to give me a HI-5, and told him he was going back to school tomorrow!

Hellloooo Blogworld!!

Wow it has been quite a ride! I believe the last time I posted we were back in South Carolina visiting relatives for a couple of days before heading to our final destination. And holy cow that was one long sentence! After three days in Charleston, we headed up north. We spent one night in Virginia, and then the next day were able to make it up to Pennsylvania. We were just a few miles shy of our final destination before we stopped for the night. We spent a month and a half living in our 26ft trailer until we finally found a place. In that month a lot has happened.

First off, we got the boys enrolled in school. This will actually happen again this week since the schools they were in are in a different district than we are now. See, when we first got here the first call we made was to a realtor, who put us in touch with a campground. (Since by that time we wanted to be able to unhook our trailer from the Jeep....makes it a lot easier to get around town!). Now, mind you, this was FEBRUARY-most of the campgrounds were closed for the season. At least the ones with running water. But, the realtor managed to find us a gem of a campground that was still by some grace of the Lord, open. But, there were some obstacles. Even though this camp was open and had running water, every time the temperature dipped to below freezing it froze the water running inside our hoses to the RV. So, we had to disconnect the water when this happened. Not such a big deal when we could hook it back up the next day and just turn it off for the night times. Until we had a cold spell that lasted for days on end, and the temps remained below freezing. At that point, we were forced to buy bottled water to do things like dishes, and some cooking. We were also forced to use the camp showers. As long as you did not mind it being 19 degrees with 10" of snow outside-walking there was no problem.  Then there was the obvious fact that it was cold. Real cold. Which meant we were using the heater in the trailer. Which meant we were spending $30 every 3-4 days to refill one of our propane tanks. We tried to keep the other one as full as possible, but there were times where we had to refill them both. That is not too bad, but we also were spending about $20 in laundry a week as well. We went and bought some portable heaters and only used the propane tanks for things like cooking. That saved us a bunch! Now, one tank could last as long as two weeks! So, you get that living in the RV was not exactly easy, but we did it.

The boys were enrolled at first in the F school district-because that is where our RV happened to be parked. This district is probably the most wonderful school district I have ever been a part of.  Michael absolutely LOVED the school he was in-for the first time in his entire life. Michael was in school just days after we arrived here. Nick on the other hand, took a bit longer. We enrolled him in F school district-just like Michael. I think the best thing Nicks old school did for him was to make his IEP like 30-40 pages long. The district rep. read this and I got a call from her personally a couple of days later. They were going to recommend that he go to the Barber National Institute, and we set up a date to tour the school. We went on the tour, and Mike and I both agreed-this school is phenominal. It took about another week to get everything arranged with paperwork and transportation, and we were kept in the loop the whole time. Nick started a mere two weeks ago, and the change in him has been drastic. He hardly meltsdown. We have maybe had three minor meltdowns in the two weeks since he has been going to that school. He has his own 1:1 aide in class, the class is only 6 students. Everything in their school is adapted for handicapped kids as well as autistic kids. Autism is what they specialize in. We get daily reports of how he is doing, and he is making excellent progress. He is in what they call their Partial Hospitalization Program. In this program, everything he needs is provided by the school. Which includes the medication he is on. We are in the process of getting him an Access Card-which is what they use to get him these things in the school.  It will also get him his private therapies at home. All of this has been a whirlwind for us. We knew it would be, and it seems like an enormous undertaking getting everything we need set up. But, we are getting there. It does seem sad to think that this program is where my child really fits. But, after our experience with him in a more mainstream type of program, mainstream just isn't for him. His needs are too great. Now, we are just hoping that the new district says the same as the previous one did. See, he can't go there without the district approval. We should find out something by Monday I would think. We were "advised" to stay in the previous district as long as we could-at least 5-8 days. We held out for ten days. Friday we took all of his paperwork to the new district including his 30+ page IEP from the Barber Inst. In it, they recommended he stay there. I am crossing my fingers.

We have also been getting Michael established in the local skating rink here. He has been taking more lessons since we first arrived. He is also signed up for spring hockey. Last week he told us he does not want to figure skate anymore, he wants to be a hockey goalie. That has been his dream since he first played that position last year. He has been begging us for goalie gear ever since. So, we managed to get him some used gear and he is ecstatic. He got his new helmet in yesterday (cause honestly, a used helmet is just gross!) and now we are just waiting on a goalie cup and pants (I think....)

We just got our furniture in last week and have spent this week getting everything unpacked. We are now in a two bedroom townhouse. Fortunately for us it does have a basement-so a lot of our stuff has ended up down there as there is just no room for it all. The boys are sharing a room again-which does not seem to bother them. After all, they have been living in a 26ft trailer for quite some time now, anything else seems like a palace!

That is just about everything. It is nice to be back!

Our Long Vacation is almost coming to a close.....

Hard to believe that our stay in Florida is now over and that we are once again living life on the road. A few weeks at Nana's house gave us at least another whole suitcase full of clothes. Considering we were almost at max capacity already in the RV with clothes, finding space for the new ones has been quite a challenge. The boys got almost every Angry Birds tee shirts known to man. We had a wonderful time in Florida. We spent afternoons at the beach (who knew they would love it so much? Especially Nick?) We took a trip to the Sanford Zoo, and Michael completed his first ever zip line course! He loved it! We spent lots of time with family, and that was awesome. During our last weekend there we threw an early birthday party for Nick. We just had a small family party with presents and cake. Nick took a little while to come around as there were a few people who seemed to show up all at once. We sang Happy Birthday to him, even though he was less than impressed with our singing abilities. He promptly stood in the corner and waited for everyone else to finish their cake before he sat down and had a piece. No one cared. There were no expectations placed on him, he did things his way. Yes I had to prompt him to open his presents....but who cares. None of them did. They were all opened eventually. He knew on some deep level that this day was about him. He smiled when I told him we were going to pick up his cake (Angry Birds...of course!) He ate two whole pieces this year!

Wednesday we left Florida and headed back up to South Carolina. We are visiting with more family here for a few days before heading up north for good. Got a couple more busy days ahead, starting with tomorrow. Not sure how much of our plans will be changed due to Nicks moods at the time, but we will deal with that when it comes. We started him on Magnesium Calcium Citrate with vitamin D3 while in Florida. We have seen some pretty amazing results. He is able to tolerate going to places a little more and not as anxious. Yesterday we were shocked that he sat in a barber's chair and let them cut his hair! He saw his dad and big brother getting a haircut, and he wanted one too. The Barber has always been a source of meltdowns due to the noise of the vacuums attached to the clippers. The fact he tolerated this and was proud of himself afterwards makes me a firm believer that this is working. He DOES understand that not everyone has these issues. It is apparent when he walks away smiling and proud of himself for doing something so simple. He has been able to go ice skating again, go to stores, and the beach with no meltdowns. Now he actually wants to go places! He jumps at the chance to go "bye bye", whereas before he would have so much anxiety that he did not enjoy going anywhere, and everything would bother him. I just want to make things easier for my little man...and judging from the last three weeks, we are on the right path. Hope it continues and I did not just jinx myself :)

Craptastic....

That is the only way to describe today so far. What did I expect though coming out of a craptastic night? Last night started out just as usual. I made Nick a dinner of raviolis since our dinner was going to be a little later in the evening and he needed to stick to his routine. He had dinner around 6pm, after that was bathtime and lotion,  and then he got his nightly leg/foot massage from Nana. He had also recieved his nightly medications of risperidal and melatonin. He should have been set for the night. Apparently not so. He woke up around midnight. Wide awake. I waited for him to go back to sleep on his own. And waited. And waited. And waited. Finally, after two solid hours of hearing him laughing and stimming, I gave him another dose of melatonin. Sometime around 3am he drifted back to sleep....I think. I don't know for sure because I was asleep by that time.

He woke up today before any of us did. I know I heard the alarm on our phone go off (and that happens at 7:45am) and Nick was awake before that. Mike got up with him and got him his morning yogurt. But Nick has gotten used to me doing that. He came down the hallway saying "Time to get up!" and tried to pull the blankets off me. I did not fully wake up until after 9am after I had my much needed caffiene and shower. To say Nick was grumpy would be an understatement. Our normal day consists of getting him to practice writing(something he hates doing, but usually does not protest a whole bunch), working on his Ipad, taking a walk outside, numerous breaks in between, but we end up getting a lot done actually. Today, we managed to get two lines of the letter A, and that is it. Numerous meltdowns and whininess. He was tired. The day was getting steadily worse and he was getting more and more upset. Around 1pm I did something I don't normally do. I gave him some melatonin and forced him to take a nap. The kid does not sleep during the day, no matter if he slept the night before. I did not want to end the day with the way things were going. So, we stopped everything and just took naps. Nick and I both fell asleep along with Mike, and I think I slept three solid hours. Nick and Mike woke before me, so they maybe had two hours. Ever since waking up from his nap, Nick has been in a much happier mood. Instead of crying and whining, he has been laughing and smiling. Sleep is what he needed today. Yes it sucks that I gave him something to put him to sleep, but now he is much happier because of it. We are not ending the day screaming at him. It is a Win-Win for all of us.

Florida

We made the journey down to Florida from South Carolina last Monday. We planned to stay longer in South Carolina, but Monday two of the kids came down with poison oak and had to stay in the house. Since we could not really do anything, we decided to go ahead and come down to Florida. We will visit South Carolina again in a few weeks and hopefully will have better luck!

We are visiting with my mom and it took only one day for her to say that Nick is exhausting! We are used to him and we are still exhausted at the end of the day. Wednesday we managed to make a trip down to the beach and enjoyed an afternoon out. The boys had a great time! It was nice to just let them run and play in the sand. Nick loved it! We need to go back when it gets a little warmer-at least warm enough to go in the ocean. It was a little chilly that day, but still way warmer than what we are used to.

I have started to work with Nick on writing. That is one of his biggest goals in his IEP from his last school. We are taking it slow, and it has led to some meltdowns, but I am determined that he will write his name. I am using every tool I can think of that I have. My child WILL write. I don't care if it is just his name, he WILL write!

While we were at the beach the other day, we stopped to get some Coldstone Ice Cream(YUMMY!!). That is where Nick took his very first spoonful of ice cream. And he kept on eating! He tried some of hubby's french vanilla, but then got turned on to my Cake Batter w/chocolate chips! He kept coming back for more :)

Right now the boys are enjoying time with their nana and aunts and uncles. Tomorrow we are going to visit with two of my aunts and maybe my cousins. Nana has agreed to come along to watch Nick and give us a chance to visit. Hope she is up for it!! LOL!

Happy New Year!!!

We welcomed 2012 on the East Coast! It was a long journey and it is not totally over with yet, but we are relaxing with family for a while. We have 'parked' in South Carolina for a couple days to visit with Mike's side of the family. After that we are headed down further south to visit with my family. Will leave you all with a couple of pictures from our travels.....

Playing with his big brother

Loving the sunshine down South!

The Night Before Christmas....Autism Style

A friend of mine passed along this poem to me today and I thought it was perfect for the upcoming holiday. Which we will just try to make it through the day with no major issues. You can find that poem and more at THIS website.




Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color and style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing

You’ll be quiet and learn,
Like the years that I did
When the tables were turned...