Wednesday, October 5, 2016

Before you judge, understand why.

I really wish there were no judgmental people in this world, but there are.  Autism is a condition which is difficult for many to understand and, once again, our family has experienced ignorance.
This post is to all of the people that have seen and judged my daughter lately - a six year old child sitting in a jogging stroller whining and crying, yelling and screaming, kicking her feet, repeatedly pulling the visor down and demanding things. This is what YOU see. You might think "What a spoiled brat!" or "She's too big for that stroller." She isn't doing it to get her way. This is Autism. Let me explain...
She rides in a stroller because it's the safest place for her. Crowded, fast-paced and noisy environments cause her anxiety, which triggers a sensory overload and she tries to flee. She also has Joint Hypermobilty Syndrome that makes her to become very tired and causes pain in her joints. 
Although she tries very hard to conform anywhere she is some days are harder than others. When her routine is changed on short notice even if it's for something fun, she will have a difficult day. When she has conform for too long or when she is hungry, thirsty or tired, she will have a difficult day. It really could be anything. It's hard enough trying to keep her comfortable and calm so we can enjoy a family outing without those little whispers behind our backs. 
April is autism awareness month and it's clear to me we need much more awareness. Not just for thirty days, but everyday! So the next time you see a family like ours trying to enjoy a fair, movie or even just food shopping remember my words, don't judge.    

From a fed up special needs mom 

Wednesday, March 4, 2015

When one door closes, you can reopen it. No seriously that’s how doors work.

 It was a Monday, one of those days where you sit down around 3pm and say to yourself "Well, that wasn't so bad.." as you knock on some wood before you jinx it! Except I must of knocked on some fiberboard or somthing plastic with grained contacted paper on it, because that's around the time everything changed. 

 It was Hulk's first Monday night wrestling practice, normally it's on Tuesday. Mr. Holland would be taking him after dinner. Everyone sat down and started eating, Doc asked her normal question "Can I have something else?" and we gave her toast with butter, her usual. Hey.. we tried, right?

 After Mr. H was done eating he started getting ready to leave. Hulk ran up and down the stairs a few time to get what he needed, because one trip is not his thing. In the middle of all of this Doc had secretly gotten ready and was waiting in the mud room. During the day I had explained to her that daddy was taking Hulk tonight so I could stay home with her, but it was obvious she had her mind set on going.

 I picked her up and brought her into the living room so the boys could get out of the house. She was already crying and beginning to turn into a puddle of goo. I held her until I heard the door shut and then let her go. She instantly ran to the door, unlocked it and fled out into the darkness. Luckily I was right behind her and caught her before she got to the bottom of the stairs. I brought her back into the house, kicking and screaming. In her mind she was going to go find daddy.

 I took her boot off so it would slow her down if she decided to flee again, it's winter here. She calmed down for a bit and asked to go count her piggy bank money, so we did. I watched her as she shook the ceramic pig, counted the few pennies that fell out and then smashed them in her new purple leopard print purse. This perpetual activity continued till the pig was empty. Then she put the purse over her shoulder and marched into her room. I went in the living room, because I thought it was over, haha boy was I wrong... She came out with another pair of boots on insisting she needed to check the porch outside. I told her it was fine and we weren't doing that. Her mood quickly changed to angry and aggressive as she ran to the door and tried to leave the house again.

We spent the next forty-five minutes standing at the door. She continued to try to escape as I held the door shut with one hand and repeatedly locked the deadbolt with the other.  Finally I picked her up and carried her away from the door as she kicked me with her boots. I sat her on the floor and explained that kicking hurts, not sure how much she comprehended as she ran to her room and slammed the door. This time I stayed in the mudroom, near the door and text Mr. Holland to explained what was going on at home. He told me that this is how she was last week when he stayed home with her. After some time all was quiet. I went and checked on her to find her snoring away with a pin-the-tail-on-the-donkey paper mask on as a sleep mask. She's such silly little girl.

A new study confirms what many parents know well: Wandering by children with autism is common, dangerous and puts tremendous stress on families. Importantly, the researchers found evidence that autism-related wandering does not stem from inattentive parenting. It also found that half of all parents had received no help or guidance on how to deal with the problem. Nearly half (49 percent) of parents reported that a child with ASD had attempted to wander or run away at least once after age 4. Over half of these wandering children (53 percent) went missing long enough to cause worry. In addition, 65 percent of these incidents involved a close call with traffic. Nearly a quarter (24 percent) involved a close call with drowning.
Dangers of Elopement The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death:
  • More than one third of children who elope are never or rarely able to communicate their name, address, or phone number verbally or by writing/typing
  • Two in three parents report their missing children had a “close call” with a traffic injury
  • 32% of parents report a “close call” with a possible drowning
Effect of Wandering on Families
  • Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
  • 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
  • 40% of parents had suffered sleep disruption due to fear of elopement
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing sibling
Resources, Support for Families 
  • Half of families with elopers report they had never received advice or guidance about elopement from a professional
  • Only 19% had received such support from a psychologist or mental health professional
  • Only 14% had received guidance from their pediatrician or another physician
Motivations for Elopement Despite speculation that summer is the peak season for elopement, 67% of parents of elopers said they saw no seasonal pattern at all; only 25% felt summer was the peak season. The top 5 reasons parents believed their children eloped included:
  • Enjoys exploring (54%)
  • Heads for a favorite place (36%)
  • Escapes demands/anxieties (33%)
  • Pursues special topic (31%)
  • Escapes sensory discomfort (27%)
The information about the facts and study on wandering is from here.

Tuesday, February 17, 2015

Why is playing so hard?

Sorry it's been a while since I did a blog entry. On Jan 14th of this year, Doc was officially diagnosed ASD level 1 (equivalent of what they used to call Asperger's). She was evaluated for speech (social) and Early Intervention, but neither of them saw anything at the time. These evals are done one-on-one with an adult in a quiet room. She works well in this situation and will mask her ASD quite well. She did receive PT for Hypermobility Syndrome for a few months. We have been working on getting a case manager and a BHP in place for home.

Tonight during wrestling practice for our boys I saw a glimpse of how hard socializing is for Doc with her peers. There were two little girls a little older than Doc. All three were playing, running around. "Let's all do this! Ok, now we're going to do this." Doc tends to come off as bossy and rude. The girls followed her "rules" till they had had enough and walked off together leaving Doc alone. There were plenty of social cues that they were getting bored and annoyed, but Doc missed them. It was heart breaking to watch. She shut down and began to pout for 10 mins on the edge of the mat. By the time we got her off the mat with the help of Mr. Magnificent, she was in a full blown meltdown and unresponsive. We left wrestling practice early with a shoeless confused little girl. I'm dreading Kindergarten. 

Tuesday, December 23, 2014

Autism Night Before Christmas

This poem was written in 2008 by Cindy Waeltermann, who is the founder of the organization Autism LinkI just discovered it today on facebook...Though many of you might like it...

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin

And gave a hot bath
But the holiday jitters
They always distract

The children were finally

All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift

The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come

But they don't understand
The pleasure she gets
Just from flapping her hands.

“They need discipline,” they say

“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod

Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like

To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know

And what they don't see
Is the joy that we feel
Over simplicity

He said “hello”

She ate something green!
He told his first lie!
She did not cause a scene!

He peed on the potty

Who cares if he’s ten,
She stopped saying the same thing
Again and again!

Others don’t realize

Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see

Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others

Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know

Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited

Over expensive things
We jump for joy
With the progress work brings

Children with autism

Try hard every day
That they make us proud
More than words can say.

They work even harder

Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it

Or can’t get a clue
Take a walk in my shoes
And I'll assure you

That even 10 minutes

Into the walk
You'll look at me
With respect, even shock.

You will realize

What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing

You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

Friday, August 22, 2014

Being an ASD parent has taught me how to be really good at waiting.

Waiting on lists for assessments, specialists and the official diagnosis.

Waiting for insurance companies to except and then waiting for the services start.

Waiting for words, just a few. 

Waiting for those amazing moments that your child presents to you as a gift, like saying "I love you!"or when they give you a hug. 

Waiting in traffic on the way home from therapies at least once a week. 

Waiting to celebrate that your home is now diaper free, our day will come. 

Waiting for your child to feel comfortable in their own environment or at least in their own skin. 

Waiting for a meltdown to subside, wishing you could fix or understand what caused it. 

Waiting for the storm to pass or better yet..learning to dance in it.

Waiting for your child to engage and make a true friend. 

Waiting for your child to try some new foods, because you're so tired of making Anne's pasta or cold oatmeal every night. 

Waiting for the day when she realize how amazing she truly is. 

Waiting to be invited into their world.  

Waiting for your child to fall asleep and hoping for a good night. 

Waiting in any drive-thru is the best (for now), because transitioning is evil!  

Waiting for them to process and understand what we are doing for the day before leaving house. 

Waiting for her favorite show to come on, because that's the only time you can comb her hair and if you're lucky maybe cut her nails. 

Waiting for the world to show awareness and much needed acceptance!  

Sunday, August 17, 2014

Preparing for the future

    For the past week I have been trying to keep my mind off the results of Doc's evaluation, still waiting for the phone call. 
    I have been working on some ideas for the new sensory/therapy room. Sensory bins are wonderful hands on fun for many ages including toddlers and preschoolers! Many skills can be learned and explored through sensory bin play including social and emotional communication, literacy, fine motor skills, and more! Sensory bins provide an outlet for children to engage in a meaningful way and also receive sensory input that their little minds and bodies crave. 
   Exploring through touch and feel can be a positive experience for most children. Sensory input from sensory bins works with your child's nervous system. Some fillers may be preferable to others, so don't give up trying! Let your child be your guide! Use a sensory bin to talk with your child about what he or she is sensing! Great communication and self-awareness activity. What do you see? How does it make you feel? What does it feel like? Help them find new words for feelings, textures, and new senses. Lots of sensory bins can also be scented with essential oils or extracts to play with the sense of smell! If your child is still very much into eating, exploring a bin full of dried cereal is still sensory play and engages the sense of taste too! 

   Our latest bin is filled with water beads. Mr. Holland can't even look at them without feeling nauseous. MVP doesn't like the feel of them (my avoiders), but the girls love running their fingers through the cold, wet, and delicate balls. This is a total sensory experience. Water beads start off as little dehydrated pebbles that expand with water. After 8 hours (we let ours sit over night) they become much bigger swishy beads. These are very calming to handle for sensory seekers. Add a string of lights under the bin and you have a very inexpensive light table for visual stimulation. To store them for a large amount of time let them dehydrate and store in an airtight container. 
(Always use under supervision and away from pets.) 

Monday, August 11, 2014

The unknowing..

Today Tink met with the neuropsych. It's such a great feeling when you find a professional that is on your side and understands. I wish we found him years ago. Her testing will begin later on this month. On the way home my emotions flooded out, I hate getting upset in front of people. I don't want their sympathy, I don't want their pity, but sometimes even adults have meltdowns! 

Last night everything finally hit me like a punch to the gut. A week of high meltdowns from Doc, waiting for her results from the eval for an official diagnosis, worrying about getting her into an appropriate preschool and Tink's neuropsych finally boiled over in head. My mind is my worse enemy! I know this. I am a little better now. The fact that I have support through all this helps, a lot!

Tomorrow we go to meet a potential preschool for Doc. Her challenges are aggression, sensory needs, and potty regression. In a regular preschool setting will she succeed? I don't know. All we can do is try.