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Showing posts from 2014

Autism Night Before Christmas

This poem was written in 2008 by Cindy Waeltermann, who is the founder of the organization Autism Link. I 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…

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…

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 …

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 …

Goodbyes and Hellos

"It's time to say goodbye, but I think goodbyes are sad and I'd much rather say hello. Hello to a new adventure."

   Tink can be very hard to work with at times and she learns how to push all your buttons. She burns you out very quickly. With that said today we made the decision to say goodbye to her BHP and move on. We could tell Tink was wearing her out and she was losing the battle of keeping her on task/schedule. This happen a year ago also. 

   As I think about it today the only thing I can "fit together" is Tink is not in school. Maybe when she's not in school she tends to"shutdown"(kinda). Maybe that's the link, maybe not. We may never know why, I dont even think Tink know's why. That's part of the mysteries with Autism. Just when you think you have found something that works, something happens.

   Next week Tink will be saying hello to the psychologist who will be evaluating her later on in August. This neuropsych testing will…

The Proprioceptive System

Proprioception is the process by which the body can vary muscle contraction in immediate response to incoming information regarding external forces, by utilizing stretch receptors in the muscles to keep track of the joint position in the body. SIGNS OF PROPRIOCEPTIVE DYSFUNCTION: 1. SENSORY SEEKING BEHAVIORS: __ seeks out jumping, bumping, and crashing activities __ stomps feet when walking __ kicks his/her feet on floor or chair while sitting at desk/table __ bites or sucks on fingers and/or frequently cracks his/her knuckles __ loves to be tightly wrapped in many or weighted blankets, especially at bedtime __ prefers clothes (and belts, hoods, shoelaces) to be as tight as possible __ loves/seeks out “squishing” activities __ enjoys bear hugs __ excessive banging on/with toys and objects 2. DIFFICULTY WITH “GRADING OF MOVEMENT” __ misjudges how much to flex and extend muscles during tasks/activities (i.e., putting arms into sleeves or climbing) __ difficulty regulating pressure when…

Really, Do You Know?

People say to me, when I'm telling my life struggles and amazements, “Oh yes, I know.” And what I want to say is “Really? Do you really know?”
Do you know expectations, like those that come home from the hospital with that beautiful babe of what her future holds? Do you know what it is to have those expectations crossed off one by one or all at once, only to have them replaced by new ones? Oh yes, you know expectations, but do you know hope?
Do you know achievements, with all their hard work and determination, big or small or somewhere in between? Do you know what it is to spend hours on each and every baby step? Oh yes, you know achievement, but do you know triumph?
Do you know teachers and aides who give their all every day for the time they are with your child as well as hours after in planning and preparation? Do you know what it is to put 6 hours of effort into 40 minutes of success? Oh yes, you know teachers, but do you know heroes?
Do you know patience, and the endurance of…

Too much of a good thing

We went to the beach for what was supposed to be relaxing and great sensory input. Doc loved it the last two times we went. Now that school is out there are more people sharing the beach. Doc was fine for the first ten mins, then she started stimming. A little voice in my head said "Repetitive movement = too much change" Thank you, Danny from Asperger Experts! I asked her if she wanted to go sit for a bit, she agreed that was a good idea. She began to fuss and then "shut-down", I could tell there was a meltdown about to happen. I asked her what was bothering her, she didn't respond. So I gave her a few minutes. "Maybe she tired?" Horsey said. I didn't think so. After some time Doc answered my question very quietly. "Everyone here is really big and I'm tiny." She said. "There are tiny kids her too, see!" Horsey said as she was pointing to little kids running with sand pails. "No, I don't want friends, I want them…

Confusion in Holland

Schools out, warmer weather, more daylight, and outdoor activities. Yahoo! Fun! Not for us.. Our family's first week of summer is the hardest due to these seasonal changes. They present challenges to the carefully orchestrated daily routines.
Today is consisting of one hiding, another pacing & reliving he's school scheduled out loud hour by hour, two throwing fits, and one bored.

Here's are some things that may help ease into summer:
1.Talk about the change ahead of time. 2. Helping your child create summer structure of his own. 3. Keep their "safe" routine as normal as you can. 4. Vacations - include your child when planning. 5. Take some time for yourself too!
Will we survive the summer? At some point, you will have to interrupt routines and change plans. If you can, the most important thing you can do is notify the child ahead of time. In the event you can’t, try to talk on a regular basis with your child about how surprises sometimes happen in life. T…

Tornado in Holland..

Anyone who loves someone with ASD knows that routines, sameness, schedules, and rituals are extremely important to them. The slightest change in something we may think to be minor could cause major meltdowns that last for days.  For the them, these things are more than a need... they are a requirement! 
Routines, schedules, rituals and habits all provides comfort and predictability in a world that is, all too often, chaotic and unpredictable. We all resist change regardless of  our mental status. It keeps chaos at bay, so we get the peace of mind that we need.  
"According to Dr. Laura Markham (Elkins, n.d.), routines offer additional advantages of reducing or eliminating power struggles, initiating cooperation, teaching/learning to manage one’s own activities, teaching/learning the concept of anticipation, help adherence to schedule, and help parents and other caregivers with “maintaining consistency in expectations.”

ASD individuals, all these benefits apply, but consequences going…

ASD, Take two!

"Parents who have a child with autism have about a 1 in 5 chance of having a second child with autism, a far greater risk than previously believed, new research shows." - New York Times

  My youngest daughter, "Doc"has always had very high levels of anxiety. Very cranky baby, crying unless she was nursing or sleeping. We assumed she was colic. She also experiences many sensory and repetitive behavior. In some ways she reminded me of Tink (her older sister), except Doc was very verbal.

9 months old
At one years old I taught her to sign, using ASL.  She would sign "bird" in excitement when she saw one. "Cracker" was her all time favorite.  Some people thought she was deaf.  It was her way to communicate till each new word became vocal, so there is less frustration. When she start to walk, we noticed a limp, We called it her hitch in her giddy-up. One ortho visit later we found out her left leg was a little shorter. She still has some leg issues.
Up…