So pleased...

Yesterday we went to the 1st Annual autism support group BBQ/picnic. It was at a park, the food was great and there was a lot for the kids to do--both of them painted pumpkins and enjoyed cider and donuts. David took Sophia over to play on the swings/slide/play structure. There were other kids there, and everyone was really friendly when I came up to check on them. I was glad Sophia didn't seem shy around the other children.

I bought a few things at the craft booth, and after eating an awesome BBQ plate, we took the kids home. Last night, Dave and I were talking about the day, and how much fun the girls had. He then told me that when he and Sophie went to the slide, she actually INITIATED conversation with the other kids by introducing herself and asking their names.

Doesn't sound like much, right? Well, maybe not for a neuro-typical child, but for Sophie this was huge. She tends to be very shy and close up around others. I can only credit her month in Kindergarten for the changes so far.

And, Sophia is growing so fast! Her bottom 2 baby teeth have already come out and adult teeth have grown in. Today, I noticed the top two are wiggly. Yikes! And Anneliese has a wiggly tooth on the bottom.

Where does the time go?

Growing up

I created this 2 page LO the other night, after seeing how grown-up my girl is starting to look. Anneliese is getting to be such a big girl! We are up to a few words now--Hi, Bye, Me, Yeah--and she is asking for items with signs. Where did the baby go?

Technically speaking, I know she is a four year old, and not a baby. But with all the physical and verbal delays, she is a year or two behind emotionally. All of a sudden, we have a pre-schooler asserting her independence, and seemingly in the throes of the terrible twos. Yikes!

On the flip side, she is running, jumping, dancing. Her hair is finally growing (thin hair is a Sotos trait) and she has curls and we can do fun things with it. She is cute as a button and loves to play tag with her sister, and ball with anyone she can find.

Emotional Roller Coaster

Well, I have been just up and down over the Sophia school choice. Last Monday (10th) her kindie class had a grandparents day program with singing etc. The noise crowded room etc just stressed her out. Hands over her ears, turning her back etc--my little lost sheep. As soon as the program ended, Sophia went straight for me, crawled in my lap and began to script one of her TV shows. Totally stressed out. After having a cookie, we went outside and she played on the slide. Calm settled on her then. Soon after, class resumed and all the families, including us, left.

Her aide seems very nice, but I was not aware that she is for afternoon only. My first reaction after getting home and thinking about how Sophia reacted was to wrap her in cotton wool and keep her safe. But, I was also aware that the program occurred on only her second day of school.

God was looking out for me that day. I thought to check the answering machine after a while, and there was a message from the specialist's office in Ann Arbor. A cancellation had opened up an appointment. So, I called the office and took the appointment for the following morning.

Dr Tsai was the doctor who had initially diagnosed Sophia in August 05 as PDD-NOS with emergent Asperger Syndrome. After David and I met with him last Tuesday, I was relieved. He gave us a game plan on what to request from the school, how to get OT and her psychologist involved, and a referral to a child psychiatrist locally to get her treated for anxiety. As Dr Tsai is well known as being anti-medication, I did not take his recommendation lightly. Sophia's anxiety permeates everything she does lately--school, going outside, reaction to outside stimulus. He would like her to be treated for 3-4 months, until the school day becomes second nature and she becomes accustomed to the roiutine and noise levels.

So, I now know what the school needs to be doing. I have a great team in Sophia's corner, I just need to get the wheels in motion.

Scrapping confidence

Well, last weekend I had my BFF Larisa to visit, and we stayed up to the wee hours scrapping, talking, and drinking wine (not necessarily in that order). Needless to say, it was fun. I began a theme album I have been planning since the beginning of the year--all my autumn pictures from 2006. It was a fall full of photo ops. We had taken the girls to the orchard for a hay ride and the pumpkin patch. Also, they helped decorate the yard for Halloween, and there were all my fall color pictures. Plus, trick or treating and the loot afterward.

So, I pulled out the kit I had prepared--Daisy D's Gypsy Harvest/Vintage Halloween. I also decided to try a different album size--a 8x12 landscape Baybox album. So, I started scrapping, a little nervous at first because I was still getting used to the size.

Well, I chugged along all week, and finished the scrapbook tonight. It was incredibly freeing to use one coordinated line, and be able to put things together easily. I also realized that about half way through the week, the pages got easier to do, no worries about titles or "design" and I began figuring out ways to arrange my page elements to best showcase the stories I wanted to tell.

In other words, scrapping was fun again. No thoughts filled my head about how to arrange the LO, and I didn't stop to look at an idea book once. Very freeing. Also, other than some Making Memories bling Halloween brads and some Karen Foster autumn loopy brads I bought, everything I used in the book came from my stash. I pulled out old vellum quote stacks from 4 years ago, my bins of brads and eyelets, and used up a bunch of ribbon I have been hoarding. Chipboard alphas? check. Sticker alphas going back 3 years? Check. Stuff I completely forgot I even had? Check. Cricut that is completely ignored? Check.

I need to do this more often. I am trying to go back to scrapping for ME. I noticed as I let myself scrap this book my way, I saw my linear, symmetrical style emerge. It looked GOOD. And I was able to see a few of the famous design techniques there on the pages, without me even realizing it. The one page I got a bit more "freestyle" on is my least favorite.

So, I am feeling "back in the groove." And as I love to say, Life is surely good.

Finally!

Well, today Sophia starts Kindergarten, at School D. Frankly, I am both amazed and relieved.

It has been a long haul to get here! I finally spoke to the head of Special Ed Student Services, JB, last Friday. She assured me she would get back to me Tuesday. I didn't hear a word. So, I called the Principal at School D. No one returned my call. Finally, I talked to SW on Wednesday afternoon--she is the district teacher consultant for children on the autistic spectrum. She go to work, told me she would drive to school D, make phone calls, and get back to me by Thursday morning.

Thursday comes. My MIL and I take the girls up to Anneliese's preschool open house. Get home at 1:o0. No message from SW. So, I call her on her cell. She tells me after a barrage of phone calls to schools with later start times, all the Kindergartens are filled to capacity. So, I asked her what they would do with a new child in the district? Make her stay home until there was an opening. I expressed my frustration, and anger over the lack of returned phone calls, the issues with busing (both last year and this) and my dissatisfaction with this school district in general. SW did assure me she understood, and that her supervisor, JB, was at School D again, insisting on Sophia's admittance.

Well, I cried off and on for the next 2 hours. Then, finally at 4:00, SW calls. Sophia has been admitted to School D, and her busing is arranged, with a pick-up time of 8:00am. YES!!!! Also, the teacher is staying late and would like to meet her. So, I call MIL, and at 4:45 we are pulling into the School D parking lot.

Turns out the teacher is an old family friend of my husband's family. She is great relating to Sophia, and when a fly got into the room, got to see Sophia's reaction to it. So at least she knows what we are dealing with. And Sophie saw the playground--loved it. The play structure has a huge dinosaur on it. (A dinosaur is the school mascot, which Sophie loves. Good Karma anyone?)

So, here we sit waiting for the bus. And Anneliese starts on Monday. 3.5 glorious hours alone are to be mine daily. Lovely!

Memories of my grandfather

Growing up, I lived near my grandparents--a short walk for me in the middle of the country. They owned 120 acres, living on one of the 40s, and we lived on the neighboring forty, with fields and woods in between. Great way to grow up.

I wrote this poem about my grandfather, in college. I think it sums up my memories quite well.

Legacy

I remember walking through the woods with my grandfather, his pace slow to allow my tiny legs to keep up.
I remember the acrid smell of Autumn leaves, falling around us in a multicolored blanket, as he showed me the birch, the poplar and the pine.
I remember the whiteness of Spring lilies, poking up from the denseness of the forest floor.
I remember the patience of my grandfather as he taught me the bird song of the swallow, the chickadee and the robin.
I remember the buzz of yellow bees, flying among the acres of orange Indian paintbrush, purple fireweed, and yellow buttercups.
I remember the sound of our laughter, as my cousins and I played in Nature's bounty, unaware in childhood of what would make this time and place so special to us in adulthood.
I remember the love and acceptance of my grandfather, as he taught me how to understand Nature, and in turn, know myself.

I remember adolescence, with all the tumult and rebellion it brought into my life, and into the lives of those around me.
I remember grandfather, teasing me out of moods and laughing with me about old Danish settlers, taking me into his past with grace and understanding.
I remember spending the night with my grandparents, thinking myself too old for such things, yet loving the time playing cribbage with Gramps long into the night.
I remember feeling more secure in my grandfather’s presence than I would for many years to come.

I remember being twenty-one, hearing with pain of my grandfather’s cancer, knowing he would die too soon.
I remember the cold rain on the day of his funeral, as Nature joined our family in mourning her lost son.
I remember with pain the sound of my grandmother’s voice as she told me not to cry as we drove away from the cemetery.
I remember my recognition of my grandmother’s generosity, comforting me after losing her life partner of 52 years.
I remember finally appreciating the strength of my grandmother as we both reluctantly learned to let go.
I remember a twinge of conscience as I learned to go forward with my life, without the guidance that had led me into adulthood.

I remember my childhood wistfully, seeing now that I was given much more than I had realized at the time.
I remember freedom and laughter, and a peace that sometimes escapes me now as the days fly by.
I remember being one with the woods, in a time when the best friend you could have was a sheepdog named Spike.
I remember the wonder of squirrels and deer, woodchucks and bear.
And I remember my grandfather, knowing that his wisdom and teaching has made me the woman I am today.

Round 1

So, I called the special education director's office today, as I hadn't heard back from them yet. I guess school D has no room in their kindergarten program. Helen (the director's assistant) pulled Sophia's IEP and has been on the phone to various special ed personnel. School D is having a meeting to see what can be done to work Sophia into their program. I flat out told Helen that if School D cannot accommodate my daughter, that I was not comfortable with Sophia's attendance at School H. She assured me that she would let me know as soon as there was new information re the situation. Great.

You know, I am really hating all this back and forth. There needs to be a simpler procedure for special needs education. I am aware that I pulled this on them at the last minute. However, who guessed that Sophia, who LIVED to play outside in April/May would become afraid to step out the door by mid June? Her biggest fear is butterflies. She obsesses about any flying insect landing on her, to the extent that if she sees one she will curl into a standing fetal position and become hysterical. I will not be sending her to school without an aide. If the school will not allow her to refrain from going outside for recess, then they will provide the necessary accommodation so that Sophia can attend school fear free. And I know my daughter--the dread of recess, combined with waking too early, will drain any enjoyment from the school day.

Sigh.....

Here we go again...

Well, after a fairly uneventful summer, school restarts soon: Sophia, September 4 and Anneliese, Sept 10. No worries for Anneliese. This will be the third year with this ECDD room--I know the routine, approximate bus times etc.

I called Sophia's school office the other day. Had not received a bus schedule, although I did get a welcome letter from the principal. The school she is to attend (School H) is not our assigned school, but the same one Sophie attended for preschool last year. We thought the consistency would help her. So, School H has a start time start time of 7:36 am. When I called the school re bus times, I was a little scared to find out time the bus would actually pick up my daughter. I was right to be afraid. 6:36 am???? For a 5 year old??? I heard that and thought "oh, Hell no." Sophie is NOT a morning person, and the thought of getting her out of bed at 5:40 am is not a pleasant one.

Plus, since Sophia has developed a severe flying bug phobia and won't go out side without a LOT of adult encouragement, I knew we were going to need an aide this year. The psychologist we see for Sophia's phobias agrees. I decided to look into the school closest to our home (School D), and see how their buses run. Turns out that School D starts an hour later than her current school. Plus, I already knew they have a Kindergarten special needs aide, as the school district explained to me in the spring that an aide was following to other students up from pre-school.

So, I did a little research today and placed a call to the special ed director in our school district. I spelled out the whats and whys for the director's assistant, and am awaiting a response. Let's hope this is easy to resolve. I don't want to start the school year for Sophie with the kind of big bang that will result if they mess with me. My husband and I agree on the course of action here, though. And, he is already starting to feel sorry for the school district. Gee, am I that big of a wench?

Yep, and more than that if I need to be. My girls have no voice but mine.

Summer 2007 10 Ten List

Well, with summer flying by, I haven't had time to think straight. In no particular order, I decided to compile a list of the stuff going on this summer that is even slightly memorable in my world.

1. Harry Potter!! Final book read, digested and discussed on message boards all over the web. Loved it. Of course, started re-reading the series immediately after I finished Deathly Hallows. And for cool HP essays, check out www.beyondhogwarts.com.

2. Pirates of the Caribbean III--slightly disappointing, but will hold final judgement until the DVD comes out and I can check the special features.

3. Bug Phobias--Sophia is hysterically terrified of flying insects. Starting therapy with a child psychologist next week. Hopefully we will get somewhere with therapy, because I don't think our family will survive with another caged in summer with a child afraid to leave the house.

4. Speech therapy--Anneliese had weekly speech therapy this summer--had to fight with the ISD to get it. She did amazing. More sounds, EIEIO to Old McDonald, simply saying "yeah." A total "life is good" moment.

5. Respite care--Dave and I decided to get respite care twice a month to give us a break. Yee-haw. We get an awesome worker each time--gramma type, and she does great with the kids. So nice to get away.

6. Summer of Bruce--I love Bruce Campbell, and have ever since seeing the Adventures of Brisco County Jr on TV. So, this summer, I bought the series on DVD. Perfection. Then when life couldn't get any better, he is starring in a new USA series called Burn Notice. As the slightly grizzled and washed up agent turned side kick, Bruce kicks booty. Now if I can just forget he ever did the abysmal show Jack of all Trades (nope, not even worth a link).

7. No scrapping--no urge to scrap yet, but bought the Basic Grey Infuse collection. Very nice, but really don't like the direction their designers are taking the paper lines these days. And I just dropped my last kit club. Time to use up some stash. Which leads to...

8. The Conscious Scrapper--great newer blog detailing the reality of scrapping as opposed to the trendy/ Debbi Designer / lets buy buy buy mentality that seems to be taking over the online scrapping community. Reading her posts really gives you a wake-up call if you haven't been thinking about these things. For myself, it was validation of the way I have been feeling for quite a while.

9. Renewed dedication to health--I just re-joined Weight Watchers this month. Had a scary ambulance trip in June, thinking it was my heart. After 4 hours at the ER, it turned out to be severe reflux. So, in addition to losing weight, I went to a gastroenterologist, started a regimen with a homeopathic doctor, and am trying to cut back the dosage of my anti-depressant. Already I am feeling like I have more energy. Can I hear another yee-haw?

10. Bequest--my father brought down some of my grandmother's furniture for me, as well as her wedding bands. I am wearing her anniversary band as my wedding band now. Due to my weight gain, I couldn't wear my own, and this ring fits as though it were made for me. And Dave understands, so is fine with it. The furniture I have started to clean and polish--a vanity table with bench and mirror, and the matching dresser. I loved watching Gran put on her make-up at that table since I was a little girl. Now I want to have the piece in my home where I can see it and remember what an amazing woman she was, and how much she contributed to who I am today.

That is my summer. And as I like to say, Life is surely good. And may it only get better.

So blessed

I was thinking about my girls the other night. Whenever someone hears that both of my daughters are special, I get the "wow, you must have your hands full." Well, I do. Full of laughs, love, funny comments, silly dances and bad knock knock jokes. Like most other preschoolers, I guess. Yes, I get a bit more tantrumming than some moms do--sensory integration difficulties guarantee that. But, as the girls get older, things are even improving on that front.

The real reason I feel so blessed is that my girls are so close. Their disabilities and personalities are completely opposite from each other: Anneliese is an extrovert, Sophia is shy; Anneliese is silent, Sophia is a chatterbox; Anneliese will persist in engaging her sister, Sophia likes her own world.

When Anneliese can't explain what she needs, Sophia helps. When Sophia gets too far into her world, Anneliese pulls her out. Sophia's physical daring and monkey like acrobatics push Anneliese to emulate her sister, helping to develop those gross motor muscles that need strengthening. The girls learn by each other's example. Anneliese wants to follow her sister, and Sophia wants to have fun with her. Sophia and Anneliese are both learning to cooperate and share, something even their schools aren't seeing yet.

As I listen to them laughing and giggling for a 1/2 hour each night after tuck-ins, I know my girlies are happy, love each other and have a best friend. Right now, nothing is more important.

Harry Potter

I am geeked--Harry Potter is coming!! It is like the third British invasion. First, the redcoats in 1776, then the Beatles, and now, Harry Potter, both the book and movie this summer. Unlike the other two invasions, the Americans have been forewarned and are ready and willing to be engulfed.

And yes, I am in that number. I get Yahoo updates every time the name Harry Potter hits the news. I pored over the new Deathly Hallows book covers, looking for any clue to the plot. I held my breath when it was announced that Emma Watson might not return for the last two movies (breathe easy folks--all three leads are signed). And, I haunt blogs and message boards looking for answers to the REALLY important questions--is Snape evil or good? how will Dumbledore communicate with Harry now that he is gone? will Sirius communicate through the mirror he gave Harry? is Harry a horcrux? and what does Aunt Petunia really know about the wizarding world? And lastly, is RAB REALLY Regulus Black, or is that another red herring?

OK, you know I'm obsessed. Hopefully, there are others out there anxiously counting down to the next book and movie. After all, there's just something about Harry.

Summer is here--bring on the scrapping guilt!

Well, between spring cleaning and gardening, I have been a busy woman lately. Deciding what things to toss, what to donate, what to store. Packing away winter coats, sorting little clothes to see what doesn't fit, re-organizing closets. Outside, I am planting new perennials, fertilizing all my plants, pruning bushes and trees, digging out plants that didn't come back after a sudden freeze in the spring.

So, I have not had the time to scrap. About three weeks ago, I was a scrapping dynamo! I did a LO each night for a week. They were pretty good, too (if I do say so myself!). But I have been so busy, I don't have the inclination to scrap. After a day of working, I want to veg in front of the TV.

I do have a project in mind--an autumn album of all the fun stuff the girls did in the fall--pumpkin patch, hay ride, trick or treat, decorating for Halloween. Originally, I was going to do an 8x8 book--but, considering the number of pictures, I am contemplating using an 8x12 Baybox. Sigh. I have never done an 8x12 album, so again, I hesitate to start.

And so it goes. The spirit is willing, but the planner in me is weak. This happens every summer. Let's just hope I can finish the Autumn 2006 album before August 2007 rolls around.

"I am that hero...."

Well, we have discovered Veggie Tales in our home. And, it is a HUGE hit. We all find ourselves humming silly songs, and watching each new DVD with interest. But, the biggest impact has been made by Larry Boy, with his amazing suction cup ears. Sophia is in love. We had to run out to Agape (our local Christian book store) the other night to buy the Larry Mobile for her.

The positive side of the Veggie Tales invasion has been that Sophia is beginning to get a concept of God and the Bible. I picked up the VT bible story book to read to her--after each VT story are the verses from the Bible that the story was based on. She enjoys hearing that read, and having it explained to her.

I'm not sure Anneliese is as enthralled by the biblical aspect of VT, but from the giggles and the dancing she does while watching the show, I know that it is a hit with her, too.

Orca Love

Well, my daughter Sophia is animal crazy, and always has been. Her first word at 8 months was "hitty" (her early word for the cat). At 2 years old, she knew about12 farm animals and what sound they make. Nowt 5 years old, she can tell you all about the animals of the rain forest--what they sound like, say and eat (thanks Diego!). Her favorite day trip is the zoo. She also knows all the different dinosaurs by name, and will earnestly correct you if you misname when.

So, yesterday she came home from, school with a picture collage she made of Orca whales. Mommy, daddy and baby whale she tells me. Very nice. She played with them all afternoon--the next thing you know, she had her little bug catcher cage and inside was her pet orca whale, Richard (don't ask).

She mentions next that orcas are nice fish. So, I explain that fish breathe with gills and lay eggs to make babies, but whales have a blow hole and have babies in their tummies that are born and swim around. She accepted that and ran off to play orca.

Well, I should have known that wouldn't be the end of it--never underestimate an Asperger child. They are too smart for the average sleep deprived mom. Sophia tells me that she is going to be a mommy orca. I tell her that;s great. She proceeds to tell me she has a baby orca in her tummy. At that point, she sticks her stuffed mouse under her shirt, and then pulls him out. "See mama, the baby orca is borned."

What could I say? It was cute. Squirrelly, but cute. That's my girl.

A last thought for today...

I think I have been reminded recently of something important. Be happy for today. Tomorrow will never be better if you carry your bad attitude forward. Yesterday only looks better because you have forgotten how negative things may have been as time dims memory.

Lately I had forgotten to appreciate those around me. Maybe my reminder came from my daughters' new obsession with VeggieTales, and hearing the positive messages repeatedly. And how can you argue with a talking cucumber?

So smile and be happy. It is contagious.

How does your garden grow?

Am loving the spring time this year. When we bought our house in June 2003, the garden was overgrown and dying. After ripping up EVERYTHING except a lilac tree, a weeping cherry and 2 evergreen bushes (we ripped out approximately 25 plants and trees that were crowded or dying) we had to dig up the existing beds and add a couple new ones. We now add 5-6 plants per year. This year was a 2nd lilac tree, a barberry, 2 more bog rosemary and two flowering almond trees, as well as a few perennials.

My efforts are finally paying off. My little bitty burning bushes (no more than twigs when I planted them in 2005) are now over 2 feet tall and filled out. They have grown 4 inches this year alone.

My hen and chicks (sempervivum) are my special favorites, although Dave thinks they look like an alien life form. But I love them--my grandmother always had them in her garden, and I thought it was so cool that the main plant would send out little "chicks." Kind of like a succulent spider plant. So, when we bough this house, I got a few from a lady thinning hers out. From 8 or nine plants and "chicks" I now have about 150 and still going strong. I am currently moving them from their metal planter to shady areas to use as ground cover. I love them--they are a great reminder of my childhood.

Currently I have lilacs, rosemary and sage in bloom, or on the verge. My weeping cherry just got done blooming. I have tulips to plant for next year. My goal is to eventually figure out a way to always have flowers in bloom... What could make for a more beautiful landscape?

Success!! Soto's diagnosis confirmed.

Well, much to my surprise, the doctor came through. His latest letter spelled it out. Despite normal NSD1 scan, she has Sotos Sundrome. He spells it out in his second letter that genetics are NOT conclusive, so his diagnosis stands.

Yay! Talked to her Early Intervention physical therapist, HF, today. HF said she was not at all surprised to hear that Anneliese has an overgrowth syndrome. It was awesome to talk to a professional who was conversant with the disorder. Most of our family and friends do not understand what Sotos is, and it is hard to explain. But, frankly, the diagnosis is for the medical and insurance communities, as LeeLee is still the little ray of sunshine she was before the arrival of Dr I's letter.

We are starting to head into stormier weather with her moods. Unfortunately, she is getting more frustrated at not getting her way--dressing, food choices, being read to, watching TV, etc--we get the tantrum to end all. We are beginning to wonder if this is just a three year old phase (like Sophia had as well) or if we are entering phase 2 with Anneliese, now that she is asserting her autonomy.

Who can say?

New MemoryWorks Catty--but....

Well, the release of the 2007-08 catalog is here. Every year, I get way excited to see what products will be available. I start planning what I "need" to buy. And the new catalog does not disappoint--Piggy Tales; Love, Elsie; new Autumn Leaves Acrylic Stamps; all the new Basic Grey; Crate Paper; Cosmo Cricket; 7 Gypsies. New bling, metals and brads--simply speaking, scrapper heaven.

Yet, this year the zing isn't there. I have so much going on in my personal life that this fades to the background. Which is as it should be. Tomorrow I take Anneliese to Univ of Mich hospital to the Pediatric Cardiology unit, to find out if there is a problem with her heart. Her Echocardiogram last month showed an anomaly. I also have Sophie's teacher conference to find out what steps the school is taking for Sophie to succeed next year in school. My dosage was just raised on my mood stabilizer because the stress is aggravating my bipolar.

And when I do scrapbook? I am doing more introspective pages, pages that reflect where we are in our life as a family. I think it is tiume to pull the Memory Makers idea book, Imperfect Lives, down off the shelf and give it another look through. Our lives are in transition right now, so scrapping only about the light fluffy events seems like a lie--I want our scrapbooks to reflect our real lives. I have begun a very personal book about my struggles and relationships with others. I want to really be on the page for those LOs, so that my children understand me down the road.

So, I still am excited about the MW catalog. That pales in significance, however, to how I will feel once I know my daughters are in a good place, both in the school system and in the medical community. And we will get there--I plan to guarantee it. And of course, I plan to scrap our progress, one day (and page) at a time.

Sotos..or not?

Well, after getting a letter from Anneliese's esteemed geneticist in Ann Arbor today, I had to call him. At one point, he gives a list of all her features that point to Sotos Syndrome. Sounds promising, right? At the end of the letter, he says the results of the NDS1 test is normal, and therefore, "these results do not support a diagnosis of Sotos."

So, I call him to ask about this, telling him of studies showing a 90% accuracy of this genetics test to determine Sotos. I also told him I was talking to him one last time before getting a second opinion. He assured me that he was an expert, no need to go further with another doctor, blah, blah blah. So I reiterate that I need a diagnosis, and he asks about the letter--won't it work for the insurance? I tell him that it is conflicting--at one point he says her symptomology is consistent with Soto, but three sentancers later states that the test results are not consistent with Sotos. He didn't see the problem. But, he will send another letter. (sigh....)

So, filled with confidence over my (not) reassuring discussion with the doctor, I sent in my records requests to get all the reports to forward on to a doctor who is aces in Sotos research. I feel like I never got an answer--all he would say was the genetics department liked to be conservative in their diagnosis. Conservative? How about CRYPTIC?? I need an answer about my daughter, not the runaround.

Babysteps, I guess. First step, mail the requests. Second step, wait for the records to arrive. Third step, ship it all to Nebraska.

And the fourth step? Pray.

Labels

All my life I have been fighting being labeled--only child; leftie; epileptic; brain tumor survivor; grad student; professor; manic depressive. There alway seems to be a preconceived notion associated with a label. In some cases, however, I am finding that a label can be a good thing.

How is that, you ask? Well, I am currently fighting to get a diagnosis for Anneliese (i.e., a label) in order to continue to get her the therapies and doctors she needs covered by the insurance. In the past 6 months, my 3 year old daughter has gone through an MRI, an Xray, an Echocardiogram and multiple blood draws to test for various genetic disorders and syndromes. We have heard our fill of syndrome names from geneticists and developmental pediatricians: Fragile X (blood work negative), Chromosomal abnormality (blood work negative), Marfan syndrome (echocardiogram negative).

We also were told about Sotos Syndrome. Anneliese seemed to fit 85% of the criteria for this disorder, so yet another blood test was order to check for a mutation of the NSD1 gene. Oh, and it will only take 6 weeks to come back. So, I broke down and called at the 5 week mark, and there were the results--normal. Sorry, Mrs. M, we can't help you further.

Meanwhile, I talk to the wonderful people on the Yahoo Sotos support group. Turns out that the genetic test is not infallible, and a clinical diagnosis can be made if your child displays certain traits/criteria. Guess what? She does. So, BANG! 4 days later I on the phone with another specialist at U of M, who I am told is very qualified and open to more ideas than bloodwork. And the mom that told me this had first seen the genetics specialist who was unwilling to help us further.

So, I have hope. I need to know my daughter's prognosis in order to get her more therapies, and know where we are going on this journey through special needs in the school system. I need to know that our family will be OK and get through this.

Above all, I need to know that my advocacy for my daughter will enable Anneliese to become the best person she can be. I will not stop until I know there are no more stones to turn over. This may not be how I pictured motherhood, but by heaven I will give my daughter the voice she has yet to find.