Monday, December 13, 2010

My F-A-M-I-L-Y and friends, take a moment and read this please

 **I found this today on one of the causes I take part of on Facebook, as I read it I had tears in my eyes, knowing that the girl that wrote this was speaking out for my Caleb and Isaac as well.  What we can learn from people with Autism...  I just ask that you take a minute to read this and understand WHY my boys stay in the bedroom or have to go into a corner and hummm and play while we all eat and do our thing on holiday get togethers.  This also would be a good read for my church family to try to understand what the boys are doing during service alot of times.

Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.

Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self- regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!

*Author, Viki Gayhardt

Saturday, December 11, 2010

Borrowing a blog post from a fellow mom to twin boys both with Down Syndrome...

A True Test of Acceptance

I heard an absolutely fascinating story today of a mother and a baby and Down syndrome.  It was NOT one of those ” a friend of a friend of a friend” kind of things.  The story teller relayed this story to me about her family member because I’m the Mom of 2 boys with Down syndrome.  And, honestly, this story has rocked me to the very core and changed my concept of true acceptance and advocacy.
*     *     *
A  23-year-old woman gave birth to her first child.  Shortly after birth, her newborn baby was diagnosed with Down syndrome.  Questioning the doctors about whether this might happen again, she was told that the occurrence of Down syndrome is merely an accident.  A mistake in the over replication of the 21st chromosome.  She and her husband were advised that their risk for having another child with Down syndrome was no greater than for anyone else and, because of her young age, they should not worry about the unlikely recurrence.  Shortly thereafter, they conceived their second child.
Sadly, the second pregnancy ended in a miscarriage.  After examination, it was determined that the unborn fetus also had Down syndrome.  The mother was referred to a geneticist where it was discovered that all of the cells in her womb — ovaries, uterus, fallopian tubes, eggs etc.  — carried 47 chromosomes instead of the usual 46.  At the age of 25, this mother was diagnosed with Mosaic Down syndrome.
Did I hear a collective gasp…  Or was that just me?  AMAZING story, right?  Extending it’s meaning, where there is one, there are others.  How many of us might be walking around with a little extra chromosomal material here and there?
The impact of mosaic DS on her development was obviously minor.  After the diagnosis, several of what she thought of as just her quirky little characteristics suddenly made sense.  She has the space between her big toe and the next.  She has small ears and narrow ear canals.  She has the simian crease in one hand.  These are all things that are relatively common in the DS population — but they can also occur in the non-DS population  so no one thought anything of it.  Otherwise, her development, her education and her life were  completely “typical”.
Can you imagine finding out at whatever age you are now, that YOU have Down syndrome?  How would you react?  Would you hide it from people?  Or, would you tell the world?  Would you embrace the information and make it part of you?  Or, would you mourn the loss of your typical self?  How do you think your spouse would react to your new diagnosis?  How do you think your boss might react? Would this news change the way you see yourself? Would it change the way you see others with Down syndrome?   Would it change the way others see you?  Would these mindshifts be for the better or for the worse?
Is  this one of those faulty “it’s fine if it happens to you but not if it happens to me” thought processes?  Is it OK for your child to have Down syndrome but not OK for you to have it?
I have been pondering this happenstance all day.  What an amazing thing to discover.  What an opportunity to change the way the world sees people with Down syndrome!  What an incredible epiphany for me, to imagine that I, my spouse, my mother, boss or neighbor might have Down syndrome and we just don’t know it.  To contemplate that absolutely any one of us could be carrying a little extra something in our genes without knowing it just levels the playing field for me! As an advocate for my children and for all people with Down syndrome, I not only accept whole-heartedly but I embrace the fact that my children have  Down syndrome.   I also believe that I’d be OK with finding out that I have Down syndrome.   As a matter of fact, I’d likely rush the podium and scream it out for the whole world to hear, “YES, I have Down syndrome and, TRULY, we are all more alike than different.”
Think about it…  I mean really give this some thought.  Could you accept a diagnosis of Down syndrome for yourself?

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Prayers for Caleb and Isaac

We went to the eye doctors yesterday in Murraysville.  We love that place.  We used to see Dr. Jane Hughes, but she's so busy with patients it takes weeks, if not months, to get in to see her.  We have been seeing their newest Doctor, Dr. Michelle Wertelet.  I think she's just as wonderful as Dr. Hughes.

I have to say, and I know those of you who know my boy will find this hard to believe, with my boys being VERY uncooperative with eye exams... Dr. Wertelet works wonders.

I made the phone call last week to get an appointment ASAP due to a "new stim" the boys seem to both be doing.  They are sticking their fingers in their eyes.  I mean touching their eye ball and putting their finger into their eye socket.  It began about a month ago with Caleb and then Isaac started doing it a few weeks ago too.  Its the weirdest stim so far they've done.  I had them at their weekly OT appointment last week and Caleb poked his eyeball like he does and they suggested we get them into the eye doctors immediately.  They said they had a little boy with Autism do this before and they couldn't remember what happened but that we needed to see an eye doctor.  So.....

After the exam, we were reassured that the reason they have not been wearing their glasses for the past 3 months or so is because both boys prescriptions have changed alot.  Then we were told that there was some concern about the poking because she saw some damage to the optic nerve.  There seemed to be some fluid retention there and she wanted to get a better look.  So we are waiting for the anesthesia department to call us to schedule a sedated MRI in Pittsburgh soon.  Upon further questioning from the doctor we really need to check out their brain and their eyes because not only do they poke their eyes like they do, but they also bang their heads really hard on walls, floors, furniture, etc... when they are frustrated.  This also seems to be happening daily.  So the MRI will tell us if there is fluid on their brain pushing on the optic nerve, or if their poking their eyes have damaged the optic nerve.  At any rate, we have to get them to stop this immediately or they risk losing their sight.

UGH.. these boys are always teaching us something.  They teach us so many wonderful things and they teach us so many different medical issues and they teach us that God is in control and he is working to make us be the best that we can be.   It reminds me of this bible verse:

1 Peter 1:6-7 (New International Version, ©2010)  ...taken from

6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7 These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.

Yet another trial, yet another reason to talk to God a little more.  I thank you in advance for saying a few prayers for my boys.  I will update when I know any more.   It probably sounds scarier than it is, but when its your kiddos, its always concerning.

Wednesday, December 8, 2010