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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Bedtime Stemming and Emotions

The clock flashed 1:11 am....

My ears had been listening to the non-stop vocal stemming for 4 hours now. My eyes could barely stay open. I had tried every trick I had up my sleeve; brushing, reiki, floor-time... This was just something we had to ride out.

1:24 am...

I was tired, I knew we had a busy day ahead of us; Music therapy, occupational therapy, physical therapy, and speech therapy. Mondays are our busy days... coming off of a 3 week bout of the kidney stones my mind and body was tired and weak. So tired! Patience has been drained from my essence... I snapped in a voice that must have seemed ferocious to her, "SAHARA, PLEASE GO TO SLEEP!!"

She started to cry. Not a tired cry, but a pissed off 'you hurt my feelings kind of cry!'. She was screaming on top of her lungs this dramatic forced angry cry!! Then she yelled, "I HATE YOU!" (pause) "I HATE YOU!"

I was stunned!!

I laid there in disbelief, not sure if I should cry or laugh. I rewound to the moment my older daughter, Emily, uttered those painful 3 words. I remembered the devastation in my heart and felt a twinge of motherly pain.

1:28 am...

I wasn't sure how to respond, so I laid there listening to the screams and cries of her processing the foreign emotion of being pissed off at her mother. I felt bad I raised my voice. I felt guilty knowing she couldn't control the stemming. And I felt helpless in the knowledge that if I interrupted her, she would have to start all over resulting in a long sleepless night.

1:30 am...

Part of me was quietly relieved as I reached over to rub her warm back. She uttered those hateful words! This had huge significance! It meant that she understood she was pissed off and she understood she was pissed off at me... not the stemming, not the autism, but at her mother for losing her patience. She had come out of her stemming and appropriately experienced her emotions.

1:34 am...

She rolled over into my motherly arms and rest her head upon my breast. She whimpered as she fiddled with my fingers. "Sahara, I love you," I gently whisper as I stroked her tears away. "I love you more than the infinite universe."

1:36 am...

All was quiet. I heard the rise and fall of her exhausted sleep. I brushed away my tears and sighed, "I am so sorry."

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Ignorance About Her 'World'

"Aren't they lucky? They get to live in their own little world. They don’t have to be bothered with what is around them like we do… It must be nice!"

WHAT!?!?!

Yep, that is the response I got during some small talk from the cashier at Star Bucks this morning, after learning I had a daughter diagnosed with autism.

I am sure she wasn’t a complete idiot, because she quickly registered the face expression I had and I am sure I was glaring at her with all the bottled up contempt I have felt for the past five years. She abruptly started talking about her autistic nephew and how he eats toilet paper and how you cannot talk loudly around him… somehow sharing her story was supposed to make the sting of her comment go away.

Was she just trying to relate? I don’t know, frankly, I don’t care. Here is my take…

Firstly, I am not going to sugar coat this… This will have graphic language! I often pride myself on being heart-centered and helping others focus on the positives on this difficult journey… sometimes I think that a small glimpse of hope is what parents on the spectrum need to hear and I made that my mission… to inspire, educate and offer hope to mothers, fathers and siblings… but today I am setting that aside to let others (on the other side of this spectrum) know the nightmare we live!!!

Like it or not this is the attitude of many people in our communities. They see our Children and they have the outer appearance of neurotypical children, so there is this misconception that these kids are well. In fact, I think that many people that are directly affected by autism have this attitude as well. (Grandparents, aunts uncles, friends, ministers, therapists, teachers, neighbors…)

Another woman once invited me to participate in a fundraiser for a local camp for kids with ‘serious illnesses’. So, I asked if they had services for kids with autism and her response knocked me off of my seat; this camp apparently was designed for kids who “suffering with serious illness”.

You know serious illnesses like asthma, arthritis, cancer, heart disease…. NOT AUTISM.

It isn’t like you’re dealing with cancer or a debilitating disease, right? Well, sometimes I think THAT would be easier… your fate is presented and there is a clear cut plan of what to do. In many of our cases, we have to go through life guessing what is going to work best of our child, because no one has a fucking clue what to do with them.

No one is doing unbiased third party research… because no money is to be made.

No one is advocating for action against the discrimination they receive from insurance companies… because it will cost too much to treat.

No one is planning for their future… because they don’t acknowledge that this is a disability and it will affect them long after the parents are gone.

The day to day challenges are dismissed as behavior problems… no one sees that it IS a serious illness; you know a medical condition….

Yes, Autism is a medical condition that prevents my child from wanting to wear clothing… no amount of coaxing is going to solve that over night!

It is a medical condition that prevents my child from having functional speech… can your child tell you if someone sexually assaulted her… mine can’t.

It is a medical condition that causes her to not have interest in what the kids outside are doing… she is not in her own world Miss Cashier she is isolated in a medical condition that won’t release its grip.

It is a medical condition that gives my child the never ending need to complete an entire cartoon episode or movie scene before she can lie down at night and sleep for a few hours before waking up because, well, I don’t know why she wakes up…. She can’t tell me!

It is a medical condition that keeps me up at night worrying about her future… will she go to kindergarten, college, get married, or have kids??

It is a medical condition that makes me call people and say don’t name my child in your will… that would really fuck up her services and treatment plan!

It is a medical condition that prevents her from sitting down with us to eat dinner… missing out on our conversations, laughter, and bonding.

It is a medical condition that makes her crave the same foods presented the same way every day… and, yes, even string, toilet paper, and dirt.

It is a medical condition that prevents me from getting a job… I have to take her to Occupational therapy, Music therapy, Speech therapy, Physical therapy… to the neurologist, geneticist, psychologist… the appointments never end.

It is a medical condition that creates fear about what will happen to her if I die… so; I have just accepted that I cannot die… I must out live my daughter so I don’t have to worry about what will happen to her, because it kills me inside to think about her future. No one in my eyes is qualified to take over.

It is a medical condition that mandates my other daughter to be put on the back burner too often…will the create anger, resentment, or rage?

It is a fucking medical condition!

No, my daughter isn’t lucky to be in her own world. I know she looks like a normal 5 year old in the cart as I push her through the rare trip to the store, but I work daily and, often, through the night at figuring out how to pull her into our world.

I want to know what she thinks, loves, knows, remembers, cherishes…

I want her to be a part of my world, her sister’s world, her father’s world, THIS WORLD!!

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NEVER Brush Face, Chest or Stomach

What would you do if you found out you were given a treatment protocol to do with your young child at home without knowing that there were specific instructions that you needed to take? And that the precautions were not addressed with you before, during or after you began treatment? In fact, you didn’t know that there were any warnings associated with a seemingly safe procedure until almost a year later!

Remember the old speech and occupational therapist that I fired… their lack of professionalism continues to haunt me. Yes, I know you thought I laid this to rest; honestly so did I… but here we go again! Only this time I am asking the question, “What do I do with this information?”

Recently, we ventured to Nationwide Children’s hospital to obtain a formal occupational therapy evaluation. During the interview I was asked about previous OT exposure. I refrained from saying what was really on my mind. Instead, I let her know that there were unprofessional circumstances that prompted her dismissal.

Somewhere during this evaluation the evaluator asked about a sensory diet.

“A Sensory What?!?!”

I responded, “The former OT never mentioned a sensory diet to me before… she mostly gave Sahara dittos and puzzles to complete coupled with jumping on a rebounder and balancing on a balance beam. In fact, when I told her I read somewhere that my OT should be able to help us with eating issues she just looked at me like a deer in head lights… that is when I started to question their ability to effectively treat Sahara. “

The evaluator said that she had seen other children with similar sensory issues as Sahara and that she thought she would highly benefit from this sensory diet. She said that we should start by teaching us how to do brushing. I responded, “Oh, well, the old OT did do that much. She gave me a little white surgical brush to use on Sahara when she felt agitated… I was instructed to stroke it on her at my own discretion and to try it on myself because it felt good.”

I didn’t understand the expression on the evaluator’s face; but it was clear something in my statement rubbed her wrong.

She continued to explain that ‘brushing’ was formally known as Deep Pressure/Porprioceptive Method Protocol for Sensory Defensiveness. I was then given a handout explaining this protocol and the instructions on how to do this which included the statement, “Only complete if you have been instructed by a trained therapist!”. It also included specific areas of the body not to use the brush on; “NEVER brush the face, chest, or stomach.”

Why was I never told this last fall when given the brush to use at home by the old OT?

As we discussed this further, I was informed that after carefully stimulating the specific deep pressure receptors of the skin you are suppose to do joint compressions (both in a set sequence) on the child to reset the nervous system. You end the session with heavy body work like carrying a backpack, sitting on a therapy ball, being hugged or anything else that stimulates the child proprioceptively and by stimulating the child orally like eating crunchy food, humming, or using a whistle. Each of these steps has a science behind it and it critical to the entire process.

“IF you rub the brush on the face, head or neck you could stimulate a seizure.”

WHAT!?!?!

Yep, and being that Sahara’s ECG showed epileptic frequencies, this was apparently a very dangerous thing to do without specific instruction. Oh, and by the way, I was informed that if you brush over the chest you could trigger heart problems and over the stomach could stimulate internal organ distress.

I was appalled that none of this was explained to me by the former OT. My only conclusion is that she does not qualify as the “instructed by a trained therapist.” Frankly, I wanted to march down there and rip her a new one, but the rational part of my essence stopped me. But, I am left with this innate pull to do something.

What do you think?

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