AUTISM:THE MUSICAL

Wow. This was so touching. Aaron and I watched it tonight- of course I cried through the whole thing, but that's nothing new.

What a sad, sweet, realistic, down-to-earth, view of Autism. Aaron and I fell in love with Wyatt and we also see a lot of Nate in all the different kids they featured. I just want to run upstairs and hug my little man in his bed.

Go buy or rent this--it is an amazing documentary.

making plans for change...

This week has been crazy busy with making plans. We are about halfway through our school evaluations to creat Nate's IEP. We took Nate to what will be his new classroom so he could meet his new teacher. I think she is great. It takes more than just great teaching skills- special needs teachers have the BIGGEST hearts. I was amazed watching all that she undertakes on a daily basis. Wow. We are very comforatable sending him there- and we are prepared for the incredibly hard first few months until a routine is established. He will be going 4 days a week for appx 2.5 hours. We also got to meet a little boy who will be one of Nate's 4 classmates next year. He appeared to be at approximately the same "level" as Nate, but he was verbal and of course Nate, is not. That is going to account for 90% of the frustration I am sure...

We are trudging ahead with Nate's ABA setup....and I do mean trudging. It is slow going trying to get everything up and running. Our students are hanging in there with us so far though, so that is a plus.

We are still trying to sort out our ST and OT options for Summer and into Fall. Nate won't have a free minute, poor guy. Let's hope we are making the right decisions for our little guy.

BIG DAY!

I don't know if it is the new supplements or what--but we are having an amazing day! First, Nate started off the morning by feeding Daddy Perky-O's (Nate's version of cheerios). Nate has never fed us anything. He has never seemed interested in our mouths or the fact that we eat too.
Second, when my friend Heather was over today for playgroup, Nate held the play phone up to my ear to pretend--ok, this is a skill he lost over a year ago. He has done NOTHING even close to pretending in over a year.
Anyway, at this rate Nate will be doing algebra after his nap today. I'll keep ya posted. :)

Why Me?

God Chooses a Mom for a Disabled Child
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew." "Forrester, Marjorie; daughter; patron saint, Cecelia." "Rudledge, Carrie; twins; patron saint... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God ? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't seperate herself from the child occasionally, she'll never survive.
Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. "I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her patron saint ?" asks the angel, his pen poised in midair. God smiles. " A mirror will suffice."

Not my usual "speed", but maybe I should just slow down once in awhile..~Meg

Signs, Signs, everywhere there's signs......

Well it finally happened. After almost a year of signing to Nate, he finally picked one up. It isn't the "proper" sign, it is his version, which is more of a clap. WE ARE SO HAPPY! It is communication progress, so we will take it. Way to go, Nate!

May is here....

Things have been moving along here towards Nate's ABA program. We have hired 3 students (one male, 2 female) from Ohio Wesleyen to work with Nate appx 20 hours a week to start. Their pay is entirely out of our pocket until some other State funding potentially comes through--so we will see how long we can continue through self funding. It isn't going to be pretty- draining every last cent we have, but I don't see another way. Our parents will help eventually I suppose, for which we are so thankful, but in the end I am sure it won't be enough to cover everything. I don't know if someone that hasn't gone through this realizes the actual money spent---between specialists that insurance doesn't pay, community classes to have him interacting with other children, ALL the supplements he is currently on (13 total, one of which is $60 a bottle....), his special diet, educational books for us, ABA training for ourselves and the aides, biomedical testing, therapy toys, and, well, I suppose I could list things for days. I didn't realize how LONG the list actually was until I started typing it out...hmmm...very depressing.

We DID make it back to the allergist and Nate tested positive for a severe DOG allergy. He was tested last Fall and it didn't show up then--so that shows you how quickly allergies develop in our little guy. Not that we have a dime to travel on, but trips to family will now be out of the question since we have quite a few BIG dogs in the family.. :(

Little Gym is still going good- he enjoys playing there. We are debating about enrolling for the Summer session because Swim Lessons will now take the Saturday am spot. We are unable to attend most activities during the week when Aaron is working because we don't have anyone to watch Neve on a regular basis.

We have officially stopped all vaccinations on Neve. She is growing so strong and her strides are amazing to watch. It is all the skills and mental growth that Nate had...before it all went away. If that happens to Neve we will never forgive ourselves if immunizations play ANY part in that. So, for now, we are stopping everything. We just want to give her EVERY chance possible to come out on the other end from all of this. Nate developed PERFECTLY normal for the first year of his life too...so the true test is yet to come...we hope for this every minute of every day.

Welcome to Holland

WELCOME TO HOLLAND by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." " Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.

Reprinted with permission from Emily Perl Kinglsey. 1987 copyright by Emily Perl Kingsley. All rights reserved