I'm excited.  I'm always interested in the possibility of meeting another family.  I already know of a few, but for depressingly random reasons, I have no real relationship with any of them.

P- Same age as Maddie (10).  His mom refuses to tell me he has Angelman Syndrome, but by off chance meetings with her neighbors, and a gossipy therapist, I know he does.

G- Same age as Cassidy (8).  I think it was too hard for the mom to compare him to Maddie. 

L- Same age as Andrew (4).  I met the mom met totally by chance in a support group meeting I was giving a presentation to.  I loaned her a book and a video, scheduled two dates for her to come over, and then never heard from her again.

I would really like to know someone else nearby.  I can't imagine my life without the love and support of the Angelman Syndrome Listserv.  Yes, it takes effort on my part too to participate, but what I get back is so much more.  To have someone locally?  That would be great.

Allting blev så himla trist nyss, för jag insåg hur kort tid jag har kvar här. Jag åker om en vecka idag. Och på den tiden ska jag se Kent+Thåström, Nanna kanske kommer ner, sightseeing med Emilie, Liseberg och sen farväl. Det är tråkigt. Men fortfarande lite skönt. Och jag tror att allting kommer gå väldigt snabbt nu. När jag kommer hem hinner jag knappt gå och lägga mig innan vi åker till Karlstad, kommer hem den 4e, den 6e kommer Amberg (alltså, den riktiga, min kusin), sen fyller vi år, firar wilma och firar att mina tänder är fria, sen blir det övik och sen börjar skolan. Och efter ett tag när jag har insett hur tråkig skolan är så kommer jag längta så mycket efter göteborg att jag inte kan hålla mig ifrån staden, så jag kommer nog ner någon gång i september. Livet är inte helt värdelöst trots allt. Nu ska jag duscha sen ska jag fly iväg från Mandolingatan.

Sam:
Breakfast: Snack Pack Sugar Free pudding, Diet Dr. Pepper
Lunch: Small chicken wrap, baked chips, Diet Coke
Dinner: 4 slices thin crust veggie pizza, Diet Coke
Nitecap: 2 glasses of wine

Jodi:
Breakfast: 1 cup raisin bran with 1 cup skim milk
Lunch: turkey on wheat sandwich
1 mozzarella cheese stick
handful of grapes
carrots dipped in low fat dressing
Dinner: 1/2 piece of b-day cake, 1/2 piece of pizza, 1 chicken fajita, stewed tomatoes

Emilie:
Breakfast: 1/2 cup of no-fat cottage cheese and small container of peaches and Diet Dr. Pepper
Lunch: Grilled Tuna salad with dressing on side
Dinner: 1/2 of a calzone with Diet Dr. Pepper

Drew:
Breakfast: Cafe Mocha
Lunch: 1/2 roast beef sandwich and Diet Coke
Dinner: 4 small slices of bacon and cheese pizza and Diet Coke

Igår var hela högen här och kollade på Zoolander, helt helt helt otrolig är den! Sen sov vi, sen ringde Linnéa och sa att vi måste upp och diska samt städa för att Sillen var en timme bort, det stämde inte, men iallafall. Sillen är för övrigt Linnéas mamma. Men det behöver jag inte berätta, för Linnéa är väl den enda som läser min blogg och hon vet nog om det. Sen skulle Erica och Lisa in till stan iallafall så jag hakade på. Köpte ett par byxor och en jättegod glass. Erica klippte sig jättefint. Och idag is the big day, hoppas jag.

Pratade också med mamma tidigare idag. Hon hade pratat med Christer som berättade att "Sofia Amberg och Linnéa Sandström står på gästlistan till Kent+Thåström på fredag". Nu kan jag andas igen. Trodde inte att jag skulle kunna gå.

På söndag och Emilie hit, roligt! Det ska bli så himla jättekul att träffa henne igen. Jag trivs jättebra här, och trots att vi inte gör någonting så har jag det kul och trevligt. Men ändå, jag saknar Emilie. Och mamma och tralalala. Vi ska gå på liseberg och sightseeing hade vi tänkt iallafall.

Nu kom Rebecka hem med godis till mig, så nu är det bäst att jag slutar blogga.

My Andrew looks up to Big Andrew, and we went to watch his ball game.  Compared to Drew's t-ball league, 12 year olds playing baseball is like the major leagues.  When we were leaving, Big Andrew waved out his window and said "Bye Maddie."

Now he could have chose to say nothing, say bye to the boys, whatever.  But it made her so happy.  The last thing I expect is for a teenage boy to put up with Maddie.  I assumed boys that age would be jerks, unaware, uncaring, simply too cool to bother. 

I was wrong.

Somebody come up with an answer to that and I'll be forever indebted.

(because smells -- good or bad, strong or mild, anticipated or novel -- make Mad puke.

I should be happy that our school agrees to provide her ESY in the Least Restrictive Environment that is closest to her regular school year placement.  For too long I had to reject ESY because the placement offered was segregated and not her LRE.  I'm also lucky that Maddie's regular school year 1:1 aide agrees to work with Maddie in the summer too.

But I am a lazy bum!  Taking Maddie to and from school at 8 and 11am is sucking the life out of my summer!  And that's bringing her home an hour early too!

I want to sleep in.

I want my (up-at-5:30-am-regardess) children to sleep in! 

I want to be able to go to the beach before noon.

I want to go grocery shopping sometime other than 10pm.

I want to let the kids stay up late and not have to say "sorry, its a school night".

And I don't want homework.  Bless that teacher for having the same expectations for classwork for Maddie, but I don't want to be doing homework!  A worksheet for Maddie means half an hour of mom prepping.

And mom is officially a lazy bum!

Rivetting Promotions and Fiend Magazine presents:
Australian tour April 2009, dates coming soon.

Source

The victorian-industrial queen herself Emilie Autumn is set to head off to australia for the first time (to the best of my knowledge) for an Australia tour in early 2009, details are so far few and far between but don't let the scarcity of fixed dates and locations get you down! As soon as they become available i'll be posting the details post haste.  I'll cross my fingers and present oblations to numerous deities to ensure her visit to Perth, you can be sure of that.

I really enjoy this blogging thing!  It's been good practice for my writing skills.  And I just plain old like to talk a lot.

Thanks to everyone who takes the time to check out my blog.  I hope its been useful to you in some way.

And double thanks to everyone who's left me a comment.  It makes it more of a conversation than me just talking to myself.

: D

Today, the kids were playing in some mud puddles ( I wrote more about it here ) and Maddie wasn't all that interested.

At the end of the day, she was the driest kid I had.  I guess she is growing up.  I guess mud puddles aren't that exciting to ten year olds.  I'm glad she's maturing, that this is some "typical" part of development for kids her age.  But I'm sad that part of her childhood is now behind her.  She found joy in the simplest things.  I hope and pray she never outgrows that.

But I've yet to mention Maddie and Angelman Syndrome.  I have a lot of guilt about this.  Its been 21 days of blogging over there, yet I haven't made mention of Angelman Syndrome.  What's the matter with me?  AS is a huge part of my life.

I haven't formally introduced any of my kids.  I've mentioned them of course, but didn't say anything specific.  Partly because of Maddie.  I don't want to be pitied.

Seriously, what is the matter with me?  Am I embarrassed to have a child with a disability?  Does it take away from me as a mom?  Does it take away from my ability to parent "normally"?  Does it make people think less of my family?  Don't I know how to just say it by now?

Every day I put off writing about Maddie, I feel like I'm making it worse.  Ugh.  I totally suck.  : (

But Maddie has a big problem going over there.  She has conditioned herself to puke at the possibility of going in.  She doesn't even make it into the house anymore.  Just go ahead and puke on the sidewalk and get it over with.  Don't pretend that we're even getting in the door.

This REALLY REALLY sucks because its hard to be a good friend to someone when you can't concentrate on the conversation because you have to keep yelling out the door for Maddie to sit on the porch.  I'm sure its insulting too, "Your house literally makes me sick."

: (

Ugh.

We took a group trip one evening to the Raging Rivers Waterpark in Grafton, Illinois.   Anyways, I thought for sure it would be flooded right now, but it looks like it might have just missed the waterpark (the road to the park is flooded, but the actual park is still operational).

Random memories of the waterpark:  It was so pretty, right next to the Mississippi River.  You could watch the barges while you swam.  It was nice seeing everyone out of the hotel setting.  I got to just sit with Tammy (conference chairperson- what a huge task) and watch Audrey swim.  The kids (of course) all had a great time in the water.  There was a family from California sitting near us on the bus ride, and the daughter just stared out the window "Everything is *so* green!"  There was a giant cyclone ride that swirls the rider down into a tunnel and then drops them in a deep pool (Cassie nicknamed it "The Toliet").  There was a downpour!  I know we were in swimsuits and wet already, but it was a hard and cold rain, and we all squeezed in under the food service tent.  I got to watch Camille for a few minutes!

This is great for raising awareness of Angelman Syndrome and demystifying disability.

It would be a great article for families new to the diagnosis of Angelman Syndrome.

Good work!

Well he was born Friday at 10:22pm and here he is now!

And here he is with his big brother Anthony...

Anyway I just had to show Benjamin Paul off b/c I'm so proud and excited!  I got to see him Sunday night when I got back from vacation and he was so cute and snuggly.  I forgot how much I love holding little babies!

Being one with nature, being away from home and commitments, being together as a family . . . it’s all great. The greatest. The best. Could not ask for more.

But one manifestation of Maddie’s Angelman Syndrome is that she gags and pukes. Often.

She pukes at smells (say for example, if a gallon of milk would happen to fall out of the camper fridge and break on the drive up and slosh into the registers, then sit in the unreachable crevices in the summer heat. . . it’s quite a noxious smell).

She pukes at disgusting-ness (take four boys, and all the boogers, snot, pee, and spit that they are either talking about or excreting, and it’s pretty much constant disgusting-ness).

Don’t get me wrong, I’m *so* used to puke. I couldn’t be more used to it. I catch puke in my bare hands. I catch puke in my own shirt so we don’t disturb where we are at. I’ve been cleaning up puke for about 10 years. From the constant projectile vomiting as an infant, to the every-mealtime puking of toddler-hood, to the every-mealtime puking because she finds her younger siblings to be messy eaters, to the lull of once every other week of a few years ago.

Puke is basically my life.

(Ok, that was a total exaggeration, but it sounded good.)

But damn is it depressing at times. Like the sixth time it happens in two days. And I step in it. Is it too much to ask that I don’t step in it? Really. That sucks.

So technically it’s not the camping that I hate, but the stepping in puke while camping. But right at this moment, my foot is still wet, and it’s hard to separate the two though.
So, when is our next trip scheduled for?
(major eye rolls)

disability

multiple disabilities

Angelman Syndrome

It hurts to have the "Angelman Syndrome" circle split even smaller.  Maddie is often called "high functioning." 

What does that mean?  I think that for most, it means she is doing better than expected per the prognosis, or that per a random pool of kids with AS, Maddie would be, skill-wise, near the top. 

It should be a good thing I guess, but if you're high, than someone else must be low.  And that's not fair.  Everyone loves to compare and contrast, and I understand that.  Each individual has many strengths and deficits. 

But to me, part of it is that "high functioning"  negates all the accomplishments and work behind them by saying "oh, she's high functioning."  Maddie has put in A LOT of work to get where she is.  So have I.  So have her siblings and friends and support staff.  She's not just doing great all by herself.  Its been work to get here and it continues to be work to maintain.  Don't dismiss it by waving it off as "high functioning".

And that doesn't mean that if your child is considered low that you are not working at it.  Not at all.

We found early on some ABA-ish training that has worked extremely well for us so far.  Its taught Maddie AND ME the basic foundation for mental focus and attention, physically calm and prepared, repetition and assessment. 

http://mcdj.wordpress.com/2007/12/31/what-worked-for-us/  (my thoughts on floortime and ABA as done by an untrained parent).
 

Best wishes to everyone.  Label yourself loving and loved.  If you have that, the rest don't really matter.

Maddie's coach is awesome.  She said if all Maddie wants to do is sit on the bench, that's fine with her. 

So Maddie will go to all of the Tuesday games to cheer on the girls on her team.  She will do the lap around the field before the game begins and the high fives with the other team when the game is over.

I'm so happy that this has worked itself out.  The coaches and girls couldnt be more welcoming and willing to adapt.  : ) 

http://mcdj.wordpress.com/2008/05/26/play-ball-2/

http://mcdj.wordpress.com/2008/05/17/play-ball-1/

They look so cute!

And so much bigger! (2006 photo)