Above & Beyond Expectations!

I can't put into words how exciting it is to see Liam act as if there's not a care in the world! I have waited his whole life for him to drop his anxieties and just play like children should and not be held back by his mind and emotions. It's crazy that I'm able to write a post like this at this time in our life when there's been huge changes all around us.

I am one happy mama to be able to report that Liam has settled into our new home, his new school, and my husband's new work schedule. We prepared and did social stories before but I never dreamed that it would be enough to set his overly thinking mind at ease. We've had very few (by few I mean only 2) episodes of an anxiety melt down but they lasted 5 minutes, ...what?!

We have gone to the zoo, water park, a weekend retreat into the mountains of New Mexico, the science museum, a small petting zoo with bounce houses. All these activities with very little resistance on Liam's part. Only the transitioning has been an issue but still, he BOUNCED in the bounce house with TONS of kids and smiled while doing it! He's made friends at school and wants to have play dates with them! I have tears in my eyes as I write this because never did I think my early intervention techniques would pay off as well as it is. Never crossed my mind that we too could do activities that others do without conflict and anxieties.

A BIG BIG THANK YOU to his special needs preschool teacher for 2 years, Mrs. Thompson! Liam grew so much from the first day we came into your class to now. I can't express how you've helped our family and how much we appreciate you.

Another BIG THANK YOU to Kerry & Carol for your ideas on schedules and charts. Kerry, whenever we talked you didn't make me feel like I'm a crazy mother who's overly concerned for my child. You listened, understood, and helped me out greatly when I needed it.

Of course my PARENTS I THANK every day for their support and understanding. I very lucky to have such caring and loving parents.

Well I'll wrap this up because its sounding more like an acceptance speech than an update about Liam. :) But I feel like I did win something, I won an anxiety free child and that's the best reward or gift that I could ever receive.

All in all, we are doing great!

Liam, who is turning 5 years old in August, has made so much progress! It's unbelievable to think that he would get out of the bathtub and grab his towel all by himself then proceed to pick out his own PJ's and dress himself, leaving his socks off while he ate dinner, and then went to bed forgetting to put them on...is this for real? The behavior binder is proving itself time and time again to help with his anxiety, OCD, and behaviors. I never thought that his disagreements would only last seconds and not hours. I'm so excited how far we keep climbing but I'm also nervous about all the changes we are about to face. Having to PCS (Permanent Change of Station- army lingo) to a whole new world in El Paso, TX makes me so anxious that I have been preparing with social stories and talking about our new house and his new bedroom with a new teacher in his new school. Everything will be a clean slate and it will be all new territory for us as a family. His little sister Gwyn is 2 years old and is a sassy carefree little girl who is very adaptable. Liam is not so adaptable and he requires explanation about everything all the time and needs to talk about every detail of a situation. We recently prepped him (for a month) to go see The Lorax in a movie theater, which was his very first time ever going to a theater to see a movie, and it went off without a hitch. I couldn't have been more happy with how he handled the whole thing, the previews (which were for an older crowd in my opinion) the seat, which kept closing up on him because he's so little and light and the movie was a new Lorax not the old Lorax which he has seen and knows about. All in all he was very adaptable and appreciated the movie, even though as we are leaving he is talking about how I didn't fix his broken car at home yet. I'm excited because I can see some normal family events in our future and I hope we don't regress with our big move across country. No matter what happens I know we will get through these times and I'm prepared so I know we will never be in the situation we were 2 years ago. This gives me hope!

Who, what, when, where, why and how?http://www.ncbi.nlm.nih.gov/pubmedhealth/

Autism is a physical condition linked to abnormal biology and chemistry in the brain. The exact causes of these abnormalities remain unknown, but this is a very active area of research. There are probably a combination of factors that lead to autism.

A number of possible causes have been suspected, but not proven. They involve:

Genetics
Diet
Digestive tract changes
Mercury poisoning
The body's inability to properly use vitamins and minerals
Vaccine sensitivity

SYMPTOMS

Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is age 2. Children with autism typically have difficulties in:

Pretend play
Social interactions
Verbal and nonverbal communication

Some children with autism appear normal before age 1 or 2 and then suddenly "regress" and lose language or social skills they had previously gained. This is called the regressive type of autism.

PEOPLE WITH AUTISM MAY:

Be overly sensitive in sight, hearing, touch, smell, or taste (for example, they may refuse to wear "itchy" clothes and become distressed if they are forced to wear the clothes)
Have unusual distress when routines are changed
Perform repeated body movements
Show unusual attachments to objects

The symptoms may vary from moderate to severe.

Communication problems may include:
Cannot start or maintain a social conversation
Communicates with gestures instead of words
Develops language slowly or not at all
Does not adjust gaze to look at objects that others are looking at
Does not refer to self correctly (for example, says "you want water" when the child means "I want water")
Does not point to direct others' attention to objects (occurs in the first 14 months of life)
Repeats words or memorized passages, such as commercials
Uses nonsense rhyming

SOCIAL INTERACTION:

Does not make friends
Does not play interactive games
Is withdrawn
May not respond to eye contact or smiles, or may avoid eye contact
May treat others as if they are objects
Prefers to spend time alone, rather than with others
Shows a lack of empathy

RESPONSE TO SENSORY INFORMATION:

Does not startle at loud noises
Has heightened or low senses of sight, hearing, touch, smell, or taste
May find normal noises painful and hold hands over ears
May withdraw from physical contact because it is overstimulating or overwhelming
Rubs surfaces, mouths or licks objects
Seems to have a heightened or low response to pain

PLAY:

Doesn't imitate the actions of others
Prefers solitary or ritualistic play
Shows little pretend or imaginative play

BEHAVIORS:

"Acts up" with intense tantrums
Gets stuck on a single topic or task (perseveration)
Has a short attention span
Has very narrow interests
Is overactive or very passive
Shows aggression to others or self
Shows a strong need for sameness
Uses repetitive body movements


Autism includes a broad spectrum of symptoms. Therefore, a single, brief evaluation cannot predict a child's true abilities. Ideally, a team of different specialists will evaluate the child. They might evaluate:

Communication
Language
Motor skills
Speech
Success at school
Thinking abilities

Sometimes people are reluctant to have a child diagnosed because of concerns about labeling the child. However, without a diagnosis the child may not get the necessary treatment and services.

TREATMENT

An early, intensive, appropriate treatment program will greatly improve the outlook for most young children with autism. Most programs will build on the interests of the child in a highly structured schedule of constructive activities. Visual aids are often helpful.

Treatment is most successful when it is geared toward the child's particular needs. An experienced specialist or team should design the program for the individual child. A variety of therapies are available, including:

Applied behavior analysis (ABA)
Medications
Occupational therapy
Physical therapy
Speech-language therapy
Sensory integration and vision therapy are also common, but there is little research supporting their effectiveness. The best treatment plan may use a combination of techniques.

DIET

Some children with autism appear to respond to a gluten-free or casein-free diet. Gluten is found in foods containing wheat, rye, and barley. Casein is found in milk, cheese, and other dairy products. Not all experts agree that dietary changes will make a difference, and not all studies of this method have shown positive results.

If you are considering these or other dietary changes, talk to both a doctor who specializes in the digestive system (gastroenterologist) and a registered dietitian. You want to be sure that the child is still receiving enough calories, nutrients, and a balanced diet.

OTHER APPROACHES

Beware that there are widely publicized treatments for autism that do not have scientific support, and reports of "miracle cures" that do not live up to expectations. If your child has autism, it may be helpful to talk with other parents of children with autism and autism specialists. Follow the progress of research in this area, which is rapidly developing.

At one time, there was enormous excitement about using secretin infusions. Now, after many studies have been conducted in many laboratories, it's possible that secretin is not effective after all. However, research continues.

EXPECTATIONS (prognosis)

Autism remains a challenging condition for children and their families, but the outlook today is much better than it was a generation ago. At that time, most people with autism were placed in institutions.

Today, with the right therapy, many of the symptoms of autism can be improved, though most people will have some symptoms throughout their lives. Most people with autism are able to live with their families or in the community.

The stresses of dealing with autism can lead to social and emotional complications for family and caregivers, as well as the person with autism.

Awareness still needs to be spread about ASD

A recent post on Facebook really rubbed me the wrong way, so much so that I "unfriended" them... Whoever can sit there & judge mothers with ASD children saying it's all from the lack of parenting is truly ignorant about the disorder. I was appalled that such ignorance can be posted for other ignorant people to comment and ralley with the same opinions...truly awareness still needs to be put out there.  We are the opposite of "lazy parents who just don't know how to handle their kids". We are up late at night writing in our journals about what happened today so that we can keep record of tantrums and what the triggers may be. We are the only ones that understand our children when the world refuses to look beyond their "selfishness" & "lack of empathy". We are up during every down time we have doing research and learning about ABA, visual, physical, & verbal prompting, comorbity, fading, reward systems, behavior modifications, accommodations, not to mention the MANY evaluations that are done just so another evaluator can do the same. All the therapies we attend, speech, behavior, play therapy...why would I, a "lazy parent" take up all my free time to fight for my kid if I am a "bad parent"?  I know the post wasn't written about me but it was written about ADHD, and high functioning autistic kids being "overly diagnosed" and "there's no need for them to be diagnosed if they're high functioning" but this was such a hurtful statement to make and it was clearly an ignorant statement because if you only knew that EVERY kid in the spectrum should receive services. Without services for Liam we would not be where we are today, I'd still be having to restrain him while he has his tantrum, I'd still be struggling with understanding what he's thinking and how to handle him so not to trigger a tantrum. If you think you can judge when you don't have kids or you have kids but they are "angels", you can't possibly begin to imagine the life of a child with ASD. To see your kid riddled with anxiety so much that he bruises his head out of rage, so filled with anxiety because the world and his own parents don't understand him, so filled with anxiety that his world crashes down when one single toy or furniture is out of the position that it was last in. Childhood isn't meant to have anxiety and worry about the exact way a task should be performed or it must be repeated until it's right.  There's nothing more painful for parents than to see your kid have more worries than YOU. Autism is a "hidden disability" and there is no cure. There is no miracle drug, unlike what that Facebook poster may think it isn't about being labeled with the disorder so you can drug your kid, and if there were a miracle drug that can help our children function then who is to judge but the parents making the decision of their own. No one should make judgments about anything but what is happening with themselves. Facebook is too easy and can give too much power for ignorant statements to be made and really no responsibility is taken for such uneducated opinions. The more I grow, the older my kids get, & the more life changes, the less opinions and judgments are passed and I start making educated opinions & try to come up with solutions. Nothing good comes from negativity but more negativity. If we concentrate on WHY & WHAT causes 1 in 88 of our children to be diagnosed with ASD & we start to try to UNDERSTAND & HELP our children rather than judge the parents and the children, the MORE success we will have at overcoming & dealing with this childhood epidemic.

Behavior Binders on sale from $30-$50! @ www.jenndominguez.weebly.com

I have finally finished the Behavior Binders that were inspired by Liam and our journey with ASD! I'm very excited to get these out there to help parents cope with any behavior problems they are having with their little ones. :) These are selling for $20.00 and I will hopefully have them up on the web to sell soon!

"STOP" Sign for behavior

Potty chart for Dora and Diego Fans!

Potty Chart for Thomas fans!

CALM DOWN CARDS

3 chores Star chart. Velcro any 3 icons and

these are the 40 icons that are included in the binder for the daily schedule...

I see the future!

Liam is doing really well lately and has been a little less stressed out with the world. Dare I say that it has been quite some time since any self-harming behavior. I'm excited that he makes progress everyday now. Awareness was the answer we needed to get ourselves on the right track. Getting Liam the help and understanding he needed at such an early age has set him free and is letting him experience and enjoy life a little more.

He can hold himself together for a good amount of time but there have been times that we are reminded to stay on top of the schedules and certain routines. When Liam interacts with Adrian he is usually on edge with one notch of anxiety, then Adrian will say something in the wrong order and there's another notch up the anxiety scale, by the time Adrian gets a banana out for the kids to eat, Liam, is midway on his anxiety and is starting to crumble, when Adrian breaks the banana in half for Gwyn and Liam to share then we have a complete meltdown that resulted in an alarm clock being thrown and breaking and about a 20 minute tantrum (progress on the time!). It still is stressful and we can never really let our guard down because everyday Liam wakes up anything could happen depending on his expectations.

I have started to write all of my experiences with Liam and autism and I'm trying to write a book. If anything it is a great reminder of where we started. I also am putting together a binder with all of the schedules, charts, and ideas and I'm hoping this will lead me down a new path, maybe to help Autism Awareness or help other parents out there that need it. We will see where this can lead me but I hope it leads me to learning more and spreading awareness to others who have a "Liam story".

Liam's teacher once asked me a question for his IEP "what plans do you have for Liam's future?" I was stumped because all I could think about as far as "future" was getting through the day. We laughed about it but I was shocked at how caught off guard I was. If I were asked that same question today, I would respond, "Liam's future is limitless for whatever he sets his mind to do."

The light at the end of the tunnel

We are finally experiencing 'the calm' after having a storm for 2 years. Adrian's schedule has been anything but routine and yet Liam's world is not disrupted by this anymore. Adrian can get Liam off the bus and he's greeted with a smile. Liam can walk in the house and things are not the way he left them and not get hung up on something changing in the environment. We have faded his reinforcements so that now his desired behaviors are natural and do not need as many reinforcements anymore. I believe we have found our balance and we can only grow from here. I still continue to seek out all the ABA workshops and books that I can so I can keep us on track. We did try ABA Services in the home over the last 4 months but it turns out that it was a year too late. We pretty much handled the severe maladaptive behaviors and the Self Injurious Behaviors on our own and by the time Insurance approved Services for us, it wasn't very beneficial to us. I just never thought that Liam or I had learned anything from those Services.

Here's some examples of how life has changed for us...
We started out having dinosaur cut PB&J sandwiches waiting on his table after school. Then I had them already made but waiting in the kitchen. Next I waited until he got home to make them, so he had to wait a little bit. Finally I can give him two choices of a snack after school and he doesn't have them until an hour after he's home.

We started out having 'fits' for 4 hours because Daddy was home before Liam came home off the bus. Now Daddy can go get him off the bus and Liam welcomes the surprise of Daddy being home.

We started out not being able to have Gwyn come with me to get him off the bus, or she couldn't be hanging in the living room when he got home. Gwyn had to be away from Liam for at least an hour after he came home. Now he is happy to see Gwyn and tell her about his day.

We still have some things to work on but his Self Injurious Behaviors have diminished. We still have maladaptive behaviors when something is spur of the moment or when I am not in the frame of mind to have reinforcements or social stories ready for him, but they have greatly decreased. We went out after school to McDonald's and ate it at the park and he was the happiest child and he felt special for being able to do something like this, instead of having a 'fit' and crying all the way until we all went home full of anxiety and regret for even trying to do something so out of routine. It really touches my
heart when we can experience something so little to many people but it's huge to us, we waited 4 years to be able to have McDonald's in the Park and have him run around without a care in the world.

Liam has now discovered how to live in the moment. (to some extent) and not get carried away by anxieties and emotions.

Liam's full diagnoses as of May 2011:

• PDD-NOS, r/o Asperger's Syndrome

• Obsessive Compulsive Disorder (OCD)

• Anxiety Disorder