Advocating with Grace

Archive for the ‘Autism’ Category

Walt Disney World and Beyond

We here in the asylum love us some Disneyworld. Our first trip was two years ago, and unfortunately ended with Storm being expelled from school two days after we got home.

We planned the hell out of our second trip, and made the mistake of telling the kids months beforehand. It raised Storm’s anxiety levels and he had a rough time in school leading up to the trip.

Once there, though, he made some strides that were unexpected. He rode Splash Mountain (once) after some begging, and even rode Test Track. He left his 3DS on the plane (I got it back at the airport when we went home), and had a major meltdown until I promised to get him a new one of we didn’t get the old one back. The strangest thing? He greeted the characters and asked them questions, and then posed for pictures.

I am so proud of him!

He also participated in the Jedi Training Academy, and blew us away with his maturity.

Unfortunately it took a couple of weeks to get back in the swing of things, but he has made great progress from the first time.

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“I Don’t Want To Be Alive”

This is what my 6yo son told me and his vice principal two days ago. “Nobody likes me. I don’t know why I feel like this but I don’t want to be alive.” This is not the first time he has said something like this, and in the past he has exhibited self-harming behaviors. When I looked up the list of childhood mental health providers that the counselor gave me to schedule an assessment, it really struck me how serious it is.

He wrote on the whiteboard in the school conference room in red dry erase marker “No Body likes [Storm].” In black underneath he wrote “[Storm] doesnt want to de aLive!” Then he drew a broken heart over it. This is only the 3rd week of 1st grade. He wouldn’t erase it until I took a picture of it because he wanted “everyone” to see it.

When we got home from therapy that night, he told the Captain and me that he couldn’t say a sentence to explain why he felt like that.

We love this child so much it hurts. He is a blessing in so many ways. To hear him say that he wants to die tears us up inside. But honestly, we don’t think it’s a suicidal thought process, but rather a wish to escape the sensory overload and frustration from the expectations he sets for himself.

Either way, he will get help.

Yesterday he had, according to him, the greatest day ever!

This morning, he had a rough start, but when I walked back to my car, I knew everything would be alright.

These Are My Fears

Every once in a while, I read news articles that break my heart. Like this one.

I’m lucky that Storm hasn’t been violent enough (yet) or big enough (yet) to put me in the hospital with one of his more physical outbursts–although his hard as a rock skull did manage to break my nose accidently while the Captain was dressing him last year.

But he’s only six right now. What about ten years from now when he’s 16? And it’s not my nose but my arm? Because I won’t let him do something that I know is dangerous or detrimental to his health? I’m not a frail little flower by any means, but I do lack physical strength, and some day he’s going to be stronger than me.

Recently a teacher from my area was convicted and sentenced following a hit-and-run of a six year old boy who ran ahead of his mom on a crosswalk. I am not going to opine on the guilt of the teacher, but rather put myself temporarily in the shoes of the mom moments before the accident.

She was pushing a stroller, and the wheel became stuck at the curb when the walk signal became green. Her little boy ran ahead across the street, even though his mom told him to stop and wait.

I can’t tell you how many times a similar scenario has occurred with us. Usually it involves a parking lot. Fortunately for us it has always ended with a disciplined punishment of some sort instead of a tragedy. The first thing that the self-righteous parenting police would say is “Hold their hand!”

Try that while juggling two small children, a purse, diaper bag with activities for the two hour wait in the therapy lobby, and locking the car (because therapy is in one of the worst neighborhoods around)–while he’s screaming bloody murder and trying to wrench himself out of my grasp while simultaneously trying to bite me.

As the parent of an autistic child, I just have to try my best to keep my kids safe while keeping myself and everyone around me safe at the same time. I pray to God I don’t end up on the news in one of these types of tragedies, and that my kids make it to adulthood in one piece. Hopefully these fears will never become realities.

New School Year

Storm has made so much progress in the last year, and looked forward to first grade all summer long. Now that he has been in school for almost two weeks, I figured I aught to give an update.

At the end of school last year, the kinder and pre-k classes had a graduation and awards ceremony. Unfortunately, I was on the brink of death with a nasty case of chicken pox. The Captain had shingles, and infected me with the disease of pain and itching. I had never been that sick in my life, and hope to never be that sick again. During that same time period my sweet beloved Corgi passed away of lymphoma. So a bright spot was the Captain coming home with Storm after his award ceremony, and showing me the award he received for “Wonderful Singer”. Mrs. T explained that he would randomly burst out in song during class, keeping his classmates and teacher amused.

Now he is in Mrs. B’s class, and he loves it. She is a very attentive teacher, and even printed out a schedule to tape onto his desk to help with transitions. I think he’ll have an excellent year.

Stay tuned for updates from our Disney World trip in September!

Birthday Blessings

Writing his thank you cards for his birthday presents.

A Busy Year – Part 2

This summer, Storm began ABA therapy at ESNT, unfortunately in a location that was a 40 minute drive from our home.  However, before the school year started in August, an opening in a much closer location became available, so Storm was able to continue therapy.

School started up in late August.  Storm seemed to bond with his teacher almost immediately.  We met informally with Mrs. T just before school started so that we could introduce ourselves and help set her up for a successful year with him.

Two weeks after the start of the year, we sat down for an informal meeting with Mr. P, Mrs. T, Storm’s case manager from ESNT, and a couple of other teachers who interact with Storm on a daily basis.  We went over his IEP, BIP, and answered any questions they had about his quirky personality.  His PE teacher shared some amusing anecdotes of his positive behavior, and the Captain and I shared some of our concerns for the year.

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At home we instituted a “token” system.  Each family member is assigned a token color, and tokens are earned and spent in a variety of ways.  The Captain and I earn our tokens for various chores, Sunshine earns them for exhibiting good manners, using the potty, and doing chores, and Storm earns tokens based on meeting behavioral goals each day.  The Captain and I can then spend our tokens on things like going out to eat and “me time” things like his usergroup meetings or my knit nights.  Sunshine can spend hers on toys or candy, and Storm uses his for extending his bedtime, having a soda with dinner, and playing Minecraft.

Our ARD meeting was in mid-November, and Mr. P remarked that it was the smoothest and easiest ARD meeting he’s ever been to!  I am so thankful that we have been blessed with such helpful, attentive, and respectful people in regards to Storm’s educational needs.

It is now St. Nicholas day, and I am amazed at the progress Storm has made.  His violent outbursts have diminished from nearly daily to once or twice a MONTH, and he has begun self-correcting himself when he becomes upset.  He is making friends, and I am recognized with happy faces at his school by other children as “[Storm]’s mom!”

I think back on my own childhood and my sister’s struggles.  She and Storm share many of the same personality quirks and I’m certain she would be diagnosed with Asperger’s given the chance.  When she was growing up, those same quirks and stubbornness was often seen as a result of “bad parenting” or choosing to have bad behavior.  Now we know that it is more a matter of not having the ability to develop social skills and mental checks and balances to begin with.  NT children pick these up fairly easily, but autistic children need to be taught how to interact with others–how to detect and process the unspoken conversation in facial expressions, tones, and body language.

In my sister’s case, the general consensus was that good behavior just needed to be spanked into a kid.  Had Storm grown up in that era, he would not have the same support system he has now, and I am certain he would continue to struggle for the rest of his life.  I am optimistic for his future, however.  He is making incredible advances in his social skills and is learning to cope with fewer and fewer modifications as time goes by.  He will always be different, and he will always be special, but perhaps he won’t struggle as much as those who went before him.

I raise a toast to those who have tread this path in the past and paved the way for success for those who came after.  To the parents who have fought with school officials, to the autistic adults who scraped their way through life to make their own success stories, and to everyone who has stood up and advocated for a better life for those of us who see the world a little differently.  God bless you all!

A Busy Year – Part 1

Life has been so crazy since the last time I updated this blog, and so many things have happened.

We had an ARD meeting with the Powers That Be in our local ISD regarding Storm’s expulsion from St. V’s and the need for more educational support from the public school district, so in January he began Pre-K at WFAA, a “School of Choice” within our district.  One of the benefits of this school is PE every day for K-5, and the emphasis on fine arts gives him a chance to express his creativity.

Storm’s honeymoon period was very short at this new school.  He got to ride the bus (an exciting daily event), and started his day out in the PPCD classroom for breakfast (our ISD provides free breakfast in the classroom for the entire elementary population).  He would then go to a regular Pre-K classroom (24 kids, one teacher, one aide) that was made up of mostly Spanish-speaking children, and stay there for most of the morning. Then he would come back to his PPCD room for snack and dismissal and ride the bus home.

Toward the end of the year he made significant enough progress with his behavior that the ARD committee determined that a specialized autism program or SPED environment was unnecessary and he could be mostly mainstreamed into Kindergarten.