So raise a glass...have some fun...and when you have a moment....say a prayer for our angel Kelly.

So I know I haven't posted in quite a while and I've got good reason, as we all do....LIFE.
I posted that they were considering Kelly to have Donnai Barrow Syndrome...well while looking at that,
genetics was able to confirm she does have Rett's Syndrome and probably has a second syndrome, maybe Donnai or another that they might not be able to confirm.
Having a diagnosis is good in that it can make sure we are following up on areas of Kelly's health that could become a concern in the future that may not be causing her a problem now, like heart arithymias (sp), seizures and scoliosis.
The flip side of the coin is all that could go wrong and not knowing, all that other children and women are going through and visualizing these things happening to Kelly. It's easy for others to say, you can't compare or don't worry yet....please....
you can't help but worry and its only human to compare.
Its new years eve and while others are celebrating the possibilities, I'm terrified of them. Of course, this diagnosis is new to us and we are still trying to deal with it and how we are to live our lives and raise our other daughter Sabrina...Sorry for the grim
or some what negative posting. I needed to vent a little.
So raise a glass, have some fun and ...when you have a moment....say a little prayer for our angel...Kelly...

Donnai-Barrow Syndrome

I know this is not a medical blog but just wondering if any one out there has had experience with Donnai-Barrow Syndrome.
It's a very rare genetic syndrome. Only one person in 200,000 in the US is estimated to have it. My daughter might have it
and there is not much info out there. With only five people in million with this syndrome. Not too many people knocking on congress' door to fund research.
Right now it's a toss up between Donnai-Barrow Syndrome and possibly Rett's Syndrome. Either way Kelly is a happy beautiful little girl who loves to climb on chairs and tables just to keep me on my toes.

Oh and her twin sister who has no medical issues just went poo poo on the potty today......YEAH for all those moms going crazy out there eventually it will happen... Of course she made a mess in her night night diaper. Every day is an adventure. : )

Neck spasms suck

Back in February, I woke up with a sore neck...thought I slept wrong on it....this happened for a few days in a row.
My neck would get stuck in one place, like if I held my cell phone by my neck or read a story to my daughter while she sat in my lap. I would push my chin with my hand until it didn't hurt.
OK....so after six months of this..I developed a burning sensation in my shoulder...so I thought the strain was getting worse...I guess I'm not so swift.....my body telling me something for quite a while and I need it to yell at me before I do anything.
Went to the Doc.....He shot my neck with litacaine.....that did not help at all.
He told me to stretch the muscle, have my husband massage, take advil and heating pads.

THAT SO DOES NOT WORK!!!!!!!!!!!!!!!!!!!!!!

Any one have experience with accupuncture or know of a type of specialist I should see. Its hurting now as I type this and it hurts when I feed my daughter at the table. Lifting arm at weird angle up and over... or somewhat twisting causing throbbing...

owwwie sniff sniff....so sad

Life goes by....

So I know everyone is so enthralled with my blog that you've all been dying for the next installment.
My little niece Jennifer turned 19 yesterday.....I miss her lots.
Kelly is out of school for the rest of the summer. We'll be going to LBI on Wednesday for a few days.
Sabrina has some class next week, digging for dinosaurs or something like that.
I'm waiting for my final delivery of drapes from JC Penney so I can pick out a paint color for my living room.
and my husband is still asleep.

Friends of ours are on a cruise in the Caribbean this week. They flew into Puerto Rico and there's a category 4
hurricane in the area. We can't reach them by phone and I don't know exactly the name of their cruise line.
We're hoping their vacation won't be ruined.

What's up with everyone else?

Great Date

Hi everyone. Guess what? Finally my husband and I were able to go out on a date....and it was wonderful.
We went to an Italian restaurant we used to go to all the time. It's been about three years since we were last there.
The food was still great. Then we went to hang out at my friends house....Hi Sue!!!...
Hope all you other parents out there get to go out on date's with your significant other too.

ho hum

Ok today is Sunday and my husband was paged into work. I'm home with the kids and should be going to a block party in about an hour but the only people I know who were invited aren't going to be there. yuk. I hate going to parties when I don't know any one. With any luck, it'll thunder storm and we'll come home but that will be just as boring. If I have to play Barbie dolls any more I'll go bonkers. Kelly just wants to climb on me and bite or pull hair. Sabrina wants to play Barbies. I want to read a good book but I haven't had a chance to do that for a while. The only time I can is at night and the girls are getting up early so I try to go to bed early. Ah yes, the nonsensical ramblings of a bored housewife.

Last night I spend over an hour making photo copies to apply for DDD benefits for Kelly. This should help now with respite care and a small stipend to help defray some out of pocket costs. Mostly it is for when she's over 18 years of age and we need help with additional vocational training as an adult or some type of housing. Let's pray for a miracle that she learns to talk and won't need special education in the future. I know its a big stretch......but if I can't hope for it who will?

Bear with me and please read

I know I haven't posted in a while but things are busy just like everyone's life gets sometimes.
I have come across a couple of emails that were sent to me over the past few months that I would like to share with
the world. I would appreciate it if you take the time to read them and feel free to have others come and visit my blog
to read it. All comments are welcome.

Remember its much harder for them.

This article is written from the vantage point of an
individual with an ASD (Autism Spectrum
Disorder). The article is reprinted with the
permission of editor/author Viki Gayhardt.
Feel free to reprint and share with your friends and
family during this holiday season.


“Dear Friends and Family” was written for the purpose of it being sent to relatives and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism.

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, I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD). 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.

Sometimes I may seem rude and abrupt, but it is only 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 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 where to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn’t understand how the inhabitants communicated. 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 where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 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 parent’s will handle the situation the best way they know.

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 chewing and swallowing 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 are impaired.

Don’t be disappointed if mommy 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! Temple Grandin , a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.

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 in my face; flap my arms 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 partaking in an activity. The grown ups call this “perseverating”, which is kind of like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don’t want to come out of that comfortable place and join your hard-to-figure-out-world. 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, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!). 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 tippies, 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 tippy 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!"



Beautiful Music about Angels on loan from Heaven

Hi everyone. I am getting more involved with Kelly's school. The past PTA president sent these lyrics to a song written by the music director at the Mercer Junior High School. He is very dedicated and devoted director who happens to be Autistic and a Music Savant. At the graduation this song was sung. It says our special needs children are angels from God sent down to earth to teach us how to love.
Anyway.......below are the words to Alan Rosen's song
Through our Eyes

What is so, and what is not - Do you know just what you have got? Is the world what it seems to be? Or are the scenes so confusing, that you find it all amusing - Well, Maybe - but this is what we see......

Through our eyes, the world's a portrait, With bright colors, red and blue and green, Filled with thoughts that are appealing, and a calm and gentle feeling, paints the scene....... it paints the scene.....

Through our eyes, we see a people struggling, to find their way every day and night. You must learn to make good choices, let the master hear your voices, to make it right...... it will turn out all right.

We are sent to teach you, humility and tolerance, forgiveness, sensitivity, how to cope -- and take a chance. We are your Angels, sent from up above, We're here to share our love - teach unrequited love.

Through our eyes, we pass up to heaven, what we know, because we're wise. It is you who is disabled, and we who are enabled. Our place on earth will earn us wings to fly. This is our disguise, God sees you, God sees you, God sees you Through our Eyes, Through our Eyes, Through Our Eyes.

Just another day in the life...

Recently a friend said she checked my blog to see what was going on in my life. ...hey that was her on the phone just now. (Hi Sue!) Actually my whole family had a stomach virus and I was thrown up on about four times over the past five day.....wooo hooo.

They say you haven't fully experienced mother hood until you are spit up on, thrown up on and peed on. Kelly peed on me before she came home from the hospital. I was changing her diaper in the NICU and she peed up in an arch like a little boy does...she got me good. Also add sneezed, coughed and pooped. Boy oh boy...I am a fully experienced mother.

Any stories of endearing motherhood experiences any one would like to share???

The Princess

Medieval Festival

We all went to a Medieval Festival on Saturday. I can't show my daughters but how about a picture of her from the back
She was the prettiest princess there. Of course we were walking around quoting all the lines from Monty Python or any other
English type movie that would fit.
At one point I said out loud..."Bring me a shrubbery." and some one else shouted out "Neee".
Guess you had to be there.

Happy Mother's Day

A wonderful Happy Mother's Day to all you moms out there in the world.
We had a quite day and went out for a nice lunch.
I was suppose to get breakfast in bed but Lief was taping a car race and I couldn't watch TV
so he said he'd bring me the paper.
but by the time he got up I had been awake for a half hour tossing and turning because I just
could not stay in bed any longer.
So I got up and helped with the girls. He still made breakfast but I ate in the kitchen.
Such is the life of a mom.....how many of you can stay in bed in the mornings.....?

Finding a place

Well today I volunteered to be the PTA Treasurer at my daughter's school. The school is for
special needs children in preschool to kindergarten. Actually kids are there from ages 3 to age 7
depending on their abilities. There is actually an entire special needs campus. They are able to
help children from ages 3 to age 21 with school, and all therapies. There is even a school just for
kids with behavioral needs.
Each time I meet a new mom and hear about their families and their challenges, I realized how lucky and
blessed we are.

As for little Sabrina...her allergies were so bad the other night, she had a bloody nose at 3am. All over the
sheets and her stuffed animals. Luckily the bleeding was able to be stopped and the sheets, blankets and
animals were all successfully cleaned. Unfortunately, I spent the night on the couch with her. Or should I
say she slept on the couch, I was half on the couch and half on the hassock. The goal this weekend is
to clean out the fourth bedroom and buy a bed to use when the girls get sick...and as a guest room.

Next step....allergist

So Kelly is doing fantastic. She took 24 steps without her leg braces last night. Despite being autistic, developmentally delayed, no speech at all, hypotonia (low muscle tone) and as of yet an undiagnosed genetic disorder she is very happy....but her reflux came back in January. She spits up or at times, throws up after eating.
And after drinking even if it is hours after eating. The pediatrician and G/I doctor don't believe she has allergies and I don't know if she does but I'm going to go and check it out. Milk and wheat are in almost everything and nothing seems to help her.
The medicine is almost useless by the end of the day. Surgery is not being considered unless she starts to get pneumonia from swallowing food into her lungs or if she persistantly losses weight. Whereas she's not losing, she's not gaining at this point either.
Sabrina has hit the terrible threes. At the store today, a lady commented on "What a nice little girl!" Sabrina replied, "I'm not nice!" I think that says it all.
Life goes on...How is everyone else in the world doing?

Hi everyone

Nothing too exciting to report....It's my birthday and I got breakfast in bed.
Unfortunately I was already up because Kelly was crying for me but once she calmed down
I went back to bed, watched a landscaping show and ate a peaceful breakfast.
It was very nice.
Steaks on the grill for dinner...yum and what beautiful weather..
Thank you God for such a wonderful day and family....not necessary in that order.

Another test passed

Well, Kelly and I spend most of Tuesday at the hospital for an endoscopy test to check to see if she had an problems internally causing her reflux. Everything looked pink and healthy. The procedure itself took three minutes but we were there nearly six hours. She screamed everytime someone touched her, especially because she was so hungry. She hates having any one try to take her blood pressure. I told them it wouldn't work. They never listen. BUT....she is extremely happy usually and is walking all over the place now with her leg braces. She went back to school with no problems after being off for spring break. Yeah for Kelly...

The kids are still asleep....

Wow it's 8 am and both girls are still asleep. This may not seem like an event to post on a blog to the average person but to a mom of twin three year olds its heaven. I just got up..it's Saturday. No one has to be any where. LIef is off of work this week.
The sun is shining. I think I'll plant my tomatoes and herbs today.....Yeah spring.

Nothing much new

Today I took the girls to the hospital while Kelly had her six month hearing test. Everything is fine as much as you can test a three year old. They want some type of OAV test but she would have to be sedated as she has to hold still for two minutes.
What three year old can hold still that long, not considering she's autistic.
Kelly was off of school this week so we had her eye dr appointment and hearing test and Sabrina had a dentist appointment.
Let's see we have an endoscopy scheduled at the hospital on Tuesday and the new GI doctor the following Thursday. Seems like we're going to doctors twice a week again. Ah..this too shall pass.

Oh yeah Sue, I thought Thor knew quite a bit of dialogue too but I wouldn't know if he were wrong or not.
I think it's time for a Monthy Python party and this holy Grail (HE HE). Bring me a shrubbery.....

Run Away........

Epi...we miss you

Must see video

OK, I'm going to try to link this video so any one can view it.


click here

http://www.whatkindofworlddoyouwant.com/videos
The video is called....The way my brother loves me...
Ok so I don't know how to link yet....I'll get there.
If you know any one with autism, try to see this video.
Beth

My First Post

OK So I now have a blog...Sue...how do you drive this thing?
I was motivated to start this blog because of a beautiful video I saw about
two brothers, one with autism. I wanted to share this with others but didn't
want to annoy my friends by sending it to them. This way, if I can figure out how
to add it to the blog you can see it if you want.