first ARD meeting ???

1-28-04

I have Abby's first ARD meeting tomorrow afternoon. I am really nervous about it. I feel totally unprepared. Especially since we are not going to enroll Abby in the Total Communication Program this year.

let the games begin...

1-22-04
Abby was evaluated for sensory development yesterday. She did really great. I mean that she was cooperative at least. I prayed that the therapist would be able to get a true evaluation, as much as she was able, and I think that was answered. Usually, Abby will not separate from me and dissolves into tears or errupts into acute tantrums when anyone places a demand on her. Granted, the therapist had really "fun" stuff for her to do, but reguardless...We will receive the full evaluation next week, but the therapist talked with me briefly afterwards. She said Abby is pretty severly impaired and is very weak. I was surprised by that. You sure wouldn't know she's weak when she's pitching a fit! A lot of her deficient scores originate from her poor receptive language, meaning her inability to understand what is being asked of her. Later while we were talking in the gym, Abby spontenously did several exercises that the OT did not think she could do, based on her performance during the evaluation. Anyway, like I said, we'll know more in a week. I feel pretty down about the outcome of yesterday. I guess I wanted just one professional to give her a good report in some area. The reality of what she is up against becomes more clear to me everyday and it isn't that great. I want to think I am not in denial, but there is definately a part of me that hopes that someone will see her and announce, "There has been a terrible mistake! She's perfectly normal. Go take a parenting class." I guess I need to count my blessings that at least her genreal health is great. We went to the ped. on Tuesday. It was wretched, poor doc., but he said she is in good health and is growing, etc. just as she should. It was the first time we'd seen him since the diagnosis and he is so kind. He gave me his personal cel. number to use anytime, even if it's just to talk. He was very sympathetic and even wrote a "perscription" for a home security system that will make it covered by our insurance because Abby is a danger to herself with her escape acts. I thought that was pretty cool. I guess we'll be getting those sensors that go "beep, beep, beep," whenever a door or window is disturbed. That's all for now. Next week: pediatric neurologist.
'Til next time....

wanna be a starting something...

1-12-04
Scheduled Some Appointments
I was able to get appointments scheduled for Abby with a Pediatric Neurologist for the end of the month and with the people we will probably use for A.B.A in February. I am waiting to hear from the OT I want to see Abby about sensory stuff. It feels good to get something started. Yay!

kaleidoscope

1-11-04
Without going too much into it, we formerly attended a wonderful church here called Watermark Community Church. We started going there when we first moved here and when my brother started looking for a new church home, they ended up there too. Anyway, since the girls were about one, we could never stay for an entire service because they would get so upset that it disrupted the whole nursery and they'd call us out. I felt, and everyone told me, that if we just kept at it, their separation anxiety would dissapate eventually so that's what we did. After a year of this things were not any better and we gave up. Before we threw in the towel, however, I volunteered in the ministry and the directors of the children's ministry met with us to try to come up with a solution, all to no avail. Often, I was getting them ready and taking them on my own because Jimmy's old job at Eatzi's required him to work many Sundays. It was so frustrating and exhausting, I cannot even tell you. Ugh. Anyway, when I called the church to let them know that we were no longer going to try to attend, thanks anyway, I mentioned that the "A" word had come up recently and the head of the program said that several members of the body had recently offered their services to that end, but nothing had been organized at that time. We moved on and I just resigned myself that going to church as a family wasn't in the cards for us. It was really disappointing to me, but I was worn out. Well, one night last week I said to Jimmy, "I wonder if Watermark ever did anything with the autism thing?" The next day I had an email from a friend of mine in Amarillo (who also is a MOT) with the contact numbers of some people at Watermark who had begun a ministry for parents of children on the autism spectrum. My friend's sister goes to Watermark and I guess she knew some of the people. So, I called this woman Saturday and we talked at some length about the ministry and Abby. Today I went, all by myself (luxury!!) and attended the early service and then checked out the program during the second service. It is SO awesome! There are 5 kids in there and as many volunteers/teachers. The adults are made up of parents of autistic spectrum kids and professionals in the field. It is like a mini group sensory intergration session during church so that parents like us can go worship! The church has bought all this great equipment just for them. I cannot believe it. You have to understand that this church is huge and they have done all of this to serve only five family members of the body. I am just blown away. I started crying while I watched them work with these children. Autism presents itself so differently in each child effected and I have never seen or read about a child whose symptoms mirrored Abby, but today there was a little girl in there that was just like her, right down to the way she holds her hands and walks. For some reason that touched me and brought me comfort. This seems like an answered prayer. One of the worst things about this disorder is how isolated families living with it become. It would be a tremendous support to have the opportunity to have fellowship every week and know that Abby is okay and that the people taking care of her can handle it and aren't going to sit in judgement speculating on why she acts the way she does. One of the ladies running the program even offered to come to our house and meet Abby a couple of times so that she'd have a somewhat familiar face when she goes the first time. While we wait to see if they have room for Abby, Jimmy is going to start taking Emma Jean so that she can get acclamated to her classroom and that way if Abby has a meltdown at least we'll only be dealing with one screaming mimi. This is one of the first rays of hope we've seen in the last year. I am so grateful.

"cozy"

1-8-04
"Cozy"
Today, Jimmy's mom came by with some fleece blankets that she had made for the girls, one is "Hello Kitty," of course. Anyway, Abby had to test them out right away and when she got all comfy under them on her bed (Beans was at school) I tucked her in and said, "Ummm. You're my cozy baby." Well hours later at dinner she was wrapping her napkin around her cup and saying, "Cozy, cozy" to her little cup. I know it sounds silly, but it was really very sweet. I love to see her play "mommy" with anything.

the last exit to normal.....

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 that 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 guide books. 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.


I remember when I first came across this poem on a message board for parents of twins three years ago (wow!). I didn't know what the forum it was posted in was about and when I found out why the forum existed, I was sad for the parents that went there and relieved that "Holland" did not apply to me. After all, I was the mother of two perfectly healthy 6 month old girls. What need did I have for "Holland?" I was touched by this poem but never thought of it again.
What a surprise to have found my own flight plans redirected to "Holland" two plus years later. Reading this poem now is completely different. I know what she means. It pretty much sums things up.I had always planned on Italy too. Anyway, I am glad to have found this poem again now and eventually I'll get used to the change in our itinerary.