One of Those Days... WTF?!?!?

So it was a rough weekend... PMS and all!!

The firework show was a bust and stimming was at an all time high in our corner of the world. We didn't make it to bed until 11:30 last night, then the new kitten woke the girls and me up at 5:00am!! It was bound to be a rough day.

The music therapist cancelled at the last minute... but, I understood... her hubby was home for the holiday and she wanted to spend the morning with him and her son. With the continued stimming and agitation this morning I am certain not much would have been accomplished anyways. So I was happy to reschedule for tomorrow morning.

All morning I reminded Sahara of the agenda of the morning that seemed to last forever... Relax, Get dressed, Brush teeth, OT, Speech, Lunch... If you don't know much about autism, routine is important to many of these kids (and adults).

So, when we pulled up to the Children's Close to home and the parking lot seemed much too empty on a Monday morning... I got a little nervous. I told Sahara to wait. Being parked right in front of the main door I was able to quickly jump out of the jeep to check the front door. It was open... whew!!

I nodded at Sahara; she took off her seat belt as I grabbed my laptop and book (Eclipse) from the passenger front seat. Sahara must have have been anticipating OT as much as I... instead of running down the sidewalk she walked right into the building and sat down in the empty lobby. I said to the subbing receptionist, "Sahara is here to see [J] for OT, then [C] for Speech."

I wasn't prepared for the response, "Oh, they aren't here today."

"What!?!?"

"I am sorry, the lab and x-rays are only seeing people today," she sheepishly replied.

"I specifically asked [C] and [J] 2 weeks ago if we had therapy today and they both said 'yes'!!"

Avoiding all eye contact she said, "I am sorry you will have to talk to them about that."

I expressed that I was upset because I not only asked one therapist, but two!! if we had therapy today and was told "yes" we did. I continued that I thought this was inappropriate for therapists who supposedly specialize in autism... certainly they should know the importance of routine for these kids on the spectrum. I didn't get a response to that...

The lobby was eerily quiet... I approach Sahara and try my best to explain why we had to leave right away. The look in her eyes said it all... no comprehension!! Instantly I am pissed, "I expect more professionalism than this from Children's Hospital!!," I snap.

I know it was not this green receptionist's fault... but I was so upset. My child was pulling away from my hand and running through the lobby clearly not comprehending why her mean mother was trying to force her to leave when we had just arrived here.

Maybe the sting was worse because we so desperately needed the platform swing today, maybe because I was looking forward to consulting with the SLP about creating a picture schedule for the summer or maybe, just maybe, because in the recess of my mind I remembered that last sting I got from the SLP.

She was explaining to me how she is going to work in the Down Syndrome Clinic, "You don't know what it is like to work with autistic children all day... "

I must not have held a good poker face because she failed miserably at saving face, "I mean, you get to go home after your appointment, I have to stay here all day, day after day. Autistic kids are hard to work with"

WTF?!?!

Where did she think I went after our appointment???? I am just really annoyed with therapists, doctors and other so-called professionals who haven't a clue what a parent of a child diagnosed with autism goes through. I can garuntee you that their degrees and experience have little comparison to the expertise us mothers and fathers on the front line have. How dare she imply that her JOB was more difficult.

I wasn't surprised when I got home to find a voice mail from the SLP on my answering machine. However, she stated that she had arrived to work and was told to go home because it is a holiday; they won't pay overtime. This doesn't add up to me as I know that she works 12 hour shifts on Mondays, so if she had arrived to work it would have been at 7:00 am not 10:30... a half hour prior to our appointment and a half hour after I reamed the receptionist.

So much for my hubby's relaxing day off with the family. After I vented, we have spent most of the day refereeing between the girls and consoling Sahara in her many many melt downs. In addition, Emily had a low grade fever and was grumpy; I was PMSing; and my dear hubby was ready to crawl under a rock.

Here's to a better day tomorrow...

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Fireworks, Ignorance and Stimming

I was all prepared to embrace our freedom and have a great time with the family. We were going to arrive a bit early, find a remote parking lot and watch the fireworks from a distance to avoid the noise, smell, people, traffic jams... if you or your loved one has autism you know why; sensory sensitivities are debilitating!!

Okay, so plans didn't go as expected... we did arrive early but the traffic was insane. Sahara kept signing for 'sparklers' and I tried to get her to understand that fireworks are like sparklers only in the sky. People were blowing their horns, playing loud music and one even yelled 'fucker' at me when I hesitated to go forward because he was looking down AND heading straight at me... I know it makes no sense to me either. My hubby told me to shake it off... I tried, but his words stung!

Of course I was already feeling on edge... we had had pizza for dinner a couple of hours earlier and prior to that Emily and I shared nachos and pop corn at the theater. I am sure my blood sugar levels were soaring; I was short and snippy... fully aware of it, but I couldn't stop. It is so frustrating to have emotions that you have no control over... really, really frustrating.

Anyways, back to the fireworks... we found a parking lot right off main street which only had 2 cars with a perfect view towards the designated show. It was close enough to have a good view and far enough away to zoom away if needed. We backed in next to one of the cars there and opened the back to my jeep. The kids forced themselves to get comfy in the blankets. Ahhh!!

Being on Main Street we were privy to the late traffic jammers... people can be so rude when the are stressed and overwhelmed. I am certain they lost sight of the whole reason we were there in the first place... to celebrate our Freedom!! But, I had too... Freedom was the farthest thing from my mind.

A few kids started throwing snaps at each other's feet; it would have been cute if it didn't make Emily wish she had brought our's. Then they pulled out the sparklers; now Sahara was even more insistent in her signing, 'sparklers?' I was almost relieved when their supply ran out, until they started to set off smoke bombs and yep, we were down wind!!

Finally, the kids settle down and in whips a blue van right next to ours. They are blaring base thumping so loud my inner core thumped with it. Sahara puts her hands on her ears as I give them a subtle look. All the kids in the van are banging their heads to this noise along with the adults. I am thinking hard how to approach them to let them know that our child has a disability that causes her to be sensitive to certain sounds... I am at a loss and certain I could find no such words. And even if I thought I had, they didn't look like the type of people to offer me compassionate understanding.

In the mean time Sahara starts to hum... I am sure she is trying to block out the base thumping. Five young kids jump out of the van and I hear them using words like "Jesus Christ" "Fuck" and "Retard"... my blood is boiling!! I try not to let it show, but I am sure everyone knows that I am pissed... especially my own family. I am certain I am ruining their good time.

I start to deep breath and ask for patience.

Suddenly a red van pulls infront of our jeep... blocking the exit path I carefully orchestrated. I am okay though.... I quickly decide if it gets much worse (and trust me it did) I could just back our jeep up onto main street and leave. My sense of relief is popped as the 7 people jump out of their van and plop a cooler full of beer and blanket five feet from the back of the jeep... they pinned us in completely!!

Not only were they blocking our view to the much anticipated (now almost dreaded) fireworks, they lit cigarettes and cracked opened beer cans... all down wind. I feel completely assulted.... thumping base on one side of me and cigarette smoke in my face... I look at my family and yearn to protect them. I can only imagine with their heightened sensitivities how they must be feeling.

Both girls found their way on the ground to play in the dirt and gravel... I presume they were seeking a sensory activity to soothe their assaulted systems... playing in dirt is always gratifying to me. It feels so calm to have the smooth grains go between my fingers and palms. They looked filthy and it made me chuckle... leave it to my daughters to find their way to the Earth to ground themselves from their environment.

When Sahara is done she is more agitated than before because now she is dirty and wants water and a towel to clean herself up, "Why didn't I better prepare?!?!" She starts to orally stim and of course our assailants of the night begin to snap looks at us... they are oblivious that it was their rude disregard that started the vocalizations. Of course they are too self absorbed to notice andmost likely ignorant of autism to comprehend the discomfort my child is experiencing. In fact, I am certain that the first van load turned up the base intentionally when the noted my obvious disapproval.

As the loud show begins Sahara's face lights up! Once again, I am feeling tender about a moment that demonstrates how far we have come... prior to this year, she had never taken note to the beautiful shimmering light in the sky... she is breathless and utters, "Wow, it's beautiful!" I well up with emotion... I note to myself that if only everyone could see this through her virgin eyes that they would experience the true meaning of Independence Day. Liberty is within her as autism loosens it's clutches.

Emily is speechless and rolls over onto her tummy. I am certain she is categorizing each design so she can recreate them in her journal over the week. My heart aches at the pain she has endured in the shadow of autism... she takes everything on. I am relieved at the moment of loosing herself into the show. I presume this is why I try to do this every year...

I want her (both of them) to have a chance at normalcy as much as possible. I presume that the notion of normalcy is over-rated and romanticized... but I try. Sometimes I think that it is the siblings that have a more difficult time. They carry burdens with them... well, at least my girl does. She worries about her sister constantly and always puts her first, but she struggles with quiet resentment too. I try my best to support her, but it is hard!

These are the things that wake up my demons inside. I see the rugrats in the van parked next to us... dis-shelved and unruly; talking worse than sailors as the parents throw out threats of physical harm and the kids retort with disrespect. I think about how hard I try to be mindful about everything I do, and how guilty I feel for being moody (probably from the sugar levels I am learning) and I become infuriated at the obvious injustice.

Then I remember, better me than them. I can handle this... I know I can!! We will get through this moment of torture just like others and be stronger and more empowered than the moment before.

The fireworks are loud even at a distance and we are blocked in; Sahara begins to run in circles while humming. I don't even try to intervene... I know this is the only way she has to soothe herself in this moment.

On the way home Sahara was stimming with intensity; rocking, hand flapping and humming. I knew she was trying to calm herself down, but nonetheless I felt helpless. I wanted to make her pain and discomfort subside. However, I know when I am upset I am about useless to her... well, that probably isn't true, but it certainly feels like it. I know I need to tend to my needs so I can be better present for both of my kids... and let's not forget for my husband as well.

I am not sure we will do this again next year or ever... As for today we have less stimming, but it is still present. I am sure her system is trying to re-regulate. I hope someday that others in our global community become aware of the sensitivities and impact they have on this generation of youth.

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