Playing Catch Up

My grandma claims “the older you get, the faster time goes by”. Before kids I didn’t realize the truth of this statement. Now, I completely understand. Days are a blur; I can hardly recall what day of the week it is. Days turn to weeks, weeks to months and before my eyes, my baby boys are growing up. I can’t believe in 3 months, they turn 3.

I wanted to catch everyone up with what’s going on…

We transitioned from CARD to Connections(Infants & Toddlers) at the end of April. We will continue with Connections throughout the summer before entering into the school system. Also I’m still holding out hope for spots in the Achievements program at CARD. (Fingers-crossed).

Here is our new schedule (April 24th through August 24th, 2012)

Monday: Playground Group with aide 10:15am-11:45am.This group used to meet inside the library, but has moved outside for the summer.

Immediately following the group, we head to The Vines, Early Intervention Speech Therapy 12:15pm-1:15pm (both receive 30 minute individual sessions)

Tuesday: Connections Program 10am-11:30pm, afterwards we head to the playground or visit grandparents

Wednesday: Connections Program 10am-11:30pm, OT 12pm-1pm (sensory/feeding issues)

Thursday:  Connections Program 10am-11:30pm

Friday: Playdate or outing with Aide

Every other Friday, speech therapist and special educator come to the house for a 1 hour group session.

Saturday/Sunday: Family outings or one-on-one with me or my husband.

Aden and Alex continue to make great progress. With progress comes new challenges. Both can now open doors, locks, windows, refrigerators, car doors, basically anything with a handle. Alex can stick the key in the car ignition and turn on the power/radio! See video: http://youtu.be/v-76uXvkyJ8 (there are a lot of great things about this video, including words, joint attention, and imitation- when he holds up the E-Z pass for the tunnel. Sorry about the annoying beeping).

Eloping is still a major safety concern. Playgrounds and yards without fences are my worst nightmare. Climbing is also a safety issue, by this I mean climbing onto the stove or up on cabinets, in sinks, anywhere they please. I’m sure most parents with 2-3 year-olds deal with similar issues. The only difference is autism makes disciplining extremely difficult. Aden and Alex don’t understand when they’ve done something wrong, which makes bad/unsafe behavior hard to correct. Most of the time they think it’s a game; they don’t understand when I’m upset or angry. They just smile at me and keep going. Sometimes it’s hard not to smile back.

Both boys are strong, fast, and at times completely out-of-control. Or is it that I’m not in control? Either way, my stress levels have reached an all-time high. I keep hearing things get better, I sure hope so.

Okay enough about all the stuff giving me gray hair, onto progress, or things that make me smile.

As I mentioned in my last blog, Alex is starting to use 3 to 4-word sentences. It all began in the Connections classroom with “I want ____” usually chips or another snack. Aden’s words are also starting to emerge. With Aden I have to presume intellect (famous words of William Stillman). Although he may not say much, I know he is taking it in. If he would just open his mouth, I know words would come out! Our OT, Mindi, told me about this computer program called Starfall (www.starfall.com). For $35 a year, we have access to the alphabet, numbers, colors, songs, etc…it’s been an amazing resource to prepare for pre-school. Both of them can now identify letters, numbers, and colors. I know an I-Pad would be beneficial but right now our budget doesn’t allow for it. Here is a video of Aden singing his ABC’s along with Starfall: http://youtu.be/XD4LHqzk_aE (this is extremely rare, he hasn’t done it since the video was taken a few weeks ago)

Aden and Alex are starting to interact more, something I feel like I’ve waited forever for. This includes, hugging, holding hands, dancing, chasing, tickling, tackling, and jumping on each other. Unfortunately neither one understands the social cue “leave me alone”, which often leads to crying and me consoling. I’m afraid they’re going to hurt each other. I can’t take my eyes off of them for a minute, which makes housekeeping and showering impossible. Thank goodness for deodorant.

The boys have begun exit testing through Infants & Toddlers. This is done as the boys approach 3 years to determine progress, ensure eligibility for services, and set future goals. Our eligibility meeting is scheduled for July 30^th. The eligibility meeting will determine what services the boys will receive in the school system.

As time continues to fly by and the boys continue to progress, the future seems less scary. Let’s hope this holds true.

Best Gifts Ever

Happy Mother’s Day to all! I had an amazing day. It started with an early morning grocery shopping trip, kid-free. Then it was onto brunch at my grandparent’s house with the day ending with a cook-out at my in-laws. I was able to spend the day with the people who matter to me most.

In terms of gifts, I didn’t get flowers or candy, jewelry or a massage, what I got couldn’t be bought. This weekend Alex said his first four word sentence “I push the button!” Lately he’s been helping me with the laundry. I’ll hand him an article of clothing and ask him to “put in” the dryer. Then he shuts the door and I lift him up to push the button. He’s always very excited but he finally said it! Those four magical words!

Today I watched Aden break out into a full dance routine for everyone to enjoy. He was the center of attention and he loved it. His smile is contagious. I wish I had my camera. Between the two, these were the best gifts ever.

Honestly Autism Day

Jon and I recently attended Honestly Autism Day (HAD), an annual conference dedicated to informing parents and educators about autism. I can honestly say my perspective on autism has changed. It started with the keynote speaker, William Stillman, a man living with Asperger’s Syndrome or high-functioning autism. (www.williamstillman.com)

Mr. Stillman has been working with kids on the spectrum for 25 years. His experiences provide a framework for changing the definition of autism. He believes autism should be respected and appreciated.

One of Mr. Stillman’s main points was that “we are all more alike than we are different”. He then went on to discuss occurrences in our daily lives that may relate to autism. For example, “you’ve experienced an “autism” if you’ve…had to physically retrace your steps in order to remember something” or “had a song stuck in your head that absolutely will not go away!” or “calmed your anxiety by biting your nails, tapping a pen, rocking your leg, or twirling your hair”. The only difference is that all of these things are socially acceptable behaviors.

To maximize our information intake, Jon and I attended different sessions. I attended a session entitled “Motor Skill and Motor Learning Deficits in Children with Autism”. One of the early red flags for both Aden and Alex was lack of using gestures, such as pointing or waving. They are starting to make progress in the motor-planning department. But it appears they are still thinking through their actions instead of them coming naturally. While it was an interesting presentation, it was more research-based and didn’t really provide me any tips on how to help the boys through intervention.

I also attended “Potty Training for Beginners”. Oh boy. After listening to this presentation, it appears Alex is almost ready. I on the other hand am not. I did learn a lot of useful strategies. I already know potty training will be more challenging for Aden because he’s harder to motivate, but potty training one at a time should hopefully make life a little easier. HA!

Finally at the end was the teen panel, my favorite part of the day. What an extraordinary group of young people. The teens spoke candidly about their experiences and challenges they face with school, teachers, and their peers. Hearing the teens speak was eye-opening and inspirational. They were intelligent, witty, sarcastic, and well-versed. Most importantly, they do not view autism as a disability or something that needs to be “cured”. They view it as a gift, a part of who they are.

Coincidentally I recently came across an excerpt in a book I was reading called “Curing Autism- The Everyday Advocate (Standing Up for Your Child with Autism)” written by Areva Martin, ESQ.

“…At the 1994 International Conference on Autism in Toronto, autistic activist Jim Sinclair addressed himself to parents in a moving presentation entitled “Don’t Mourn for Us”:

…”Look at your grief from our perspective….autism isn’t something a person has, or “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence….It is not possible to separate the person from the autism. Therefore, when parents say “I wish my child did not have autism,” what they’re really saying is, “I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.” …This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure”.

I admit when Aden and Alex were first diagnosed, I was one of those parents who wished I didn’t have a child with autism. Of course I questioned why? And then I questioned how do I fix them? I searched for answers and read tons of research articles. If a cure existed, I would have hopped on the bandwagon immediately. I no longer pray for a cure, I pray for opportunity and awareness.

Overall, HAD was the biggest support system I’ve encountered. It is true about strength in numbers. I left there feeling stronger. I left there with a changed perspective.