Hodgepodge

Giving thanks

2012-02-07T21:27:00.002-05:00

We have come a very long way with Em, there was a time where her behaviors were so destructive that it was all we could do to get through a day. I think back a few years ago and I sometimes ask myself how we got through some of those days. We’ve come into an amazing place with Em, she has calmed down and tuned in. Sometimes, when you’re in the thick of situations you can’t step back and see the growth but when the dust settles, it’s amazing to see how far you have come. I don’t know what clicked, I don’t know what changed but I do know that I am so thankful for the changes.

There’s no guidebook to raising a child with both Down syndrome and Autism, it’s a bit of trial and error and A LOT of connecting with others and learning from what they did right and wrong. If there’s something that I could share with another parent it would be to keep striving for the next goal, don’t let the excuses pile up.

365:38

2012-02-07T20:09:00.003-05:00

Half day at school today so we went bowling

we had a great time :)

365:37

2012-02-06T20:06:00.002-05:00

All floors in dr's offices seem look alike!

365:36

2012-02-05T15:27:00.000-05:00

WINNING!!!!!

365:35

2012-02-04T14:20:00.005-05:00

LOVE

I took the pics from Christmas Cards

we got this year and made them into

a heart :) our pics are in the center.

Chaotic Basement

365:34

2012-02-03T19:24:00.005-05:00

Today we did stamping, I got this great Melissa & Doug Stamp set from Kids Woot.

She kept signing "help" even though she was doing just fine with it, I think sometimes she just wants me to do it for her. She did a good job with it :)

Salute!

365:33

2012-02-02T19:19:00.002-05:00

This pic cracks me up, she SO into the TV show.

We're having such a crazy winter. Usually we would have several feet of snow on the ground but as you can see we're snow free. LOVING every minute of it :)

365:32

2012-02-01T19:13:00.001-05:00

The boy and his loyal sidekick are ready to take over the world!

365:31

2012-01-31T22:13:00.001-05:00

Emily and I continued to work on our Valentine project but I ran out of glue stick, I really don't understand how since I feel like I buy those every other week.

Nicole's homework was to show where she is today and map out the next 50 years of her life, this is what she came up with :)

365:30 Starting our Valentine cards

2012-01-30T22:06:00.001-05:00

Today we started on our Valentine Day cards. I am having Emily color on construction paper and then

I am VERY proud at how well she holding the paper and marker now :) such HUGE steps.

I am taking that paper and cutting out hearts to form these cards, she will then add stickers AND stamp her name. We have to start early because there are many to do.

leaving NY

2012-01-29T10:05:00.001-05:00

there's no pics today, was really kind of down about leaving NY, I honestly miss it.

365:28 NY

2012-01-28T09:51:00.002-05:00

the biggest B&W cookie

Me, one of my besties from HS and her adorable daughter :)

My handsome son :)

365:27 Home sweet home

2012-01-27T09:22:00.000-05:00

I'm in NY for the weekend and I have to admit that I love being home. The Landmark Diner was a place we used to go after late nights out, I was shocked to see this two story fantastic restaurant. I have to say I really miss diner's living up here in NH.

365:26 Play-Doh fun

2012-01-26T09:19:00.000-05:00

Today everyone was much better in the house and Emily and I had some Play-Doh fun:)

325:25

2012-01-25T09:16:00.000-05:00

Today Joey was sick Em was still under the weather and I wasn't feeling so hot either. No pics today.

Sliding backwards

2012-01-24T09:25:00.004-05:00

Emily has always had gut issues and for some reason this always gets worse in the winter, I have no idea why. It seems unreasonable to me that the weather conditions would have anything to do with her digestion slowing down. We have tried a lot of different medicines both natural and over the counter stuff but nothing really seems to do that trick. This change in her brings out the worst in all of us because she's hurting and upset, it just puts everyone on edge.

I noticed yesterday that Em's hands are very weak when she is coloring or using a pencil, it's quite strange. I need to talk with her OT about that.

325:24

2012-01-24T09:10:00.002-05:00

Em is SO sick.

365:23 Paper flowers

2012-01-23T09:05:00.001-05:00

We did Paper flowers today, and even Daddy came to help.

Em really loved having him there to help.

Rock painting?

2012-01-22T16:22:00.005-05:00

I purchased a kit for rock painting and it was awful. The rocks were very small and painting on them kinda sucked. Billy was laughing at me for buying a kit instead of just getting rocks in the backyard, but I thought that these rocks would be smooth and flat, they weren't. No pics because it was just not a great time.

My new obsession is Pinterest, I love this site. I've learned a lot and admittedly felt a little inferior to some of the other mom's on the site. I feel so inspired.

Yesterday we took Emily to a dance and she danced the whole time, she had a great time and it was so nice to see her just having fun, really great times.

365:22

2012-01-22T09:03:00.000-05:00

a kitten and her string

365:21 A snoopy kind of happy

2012-01-21T08:51:00.000-05:00

This was taken at a dance, she's so happy it looks like she's doing the Snoopy dance.

365:20

2012-01-20T08:34:00.000-05:00

365:19

2012-01-19T13:21:00.000-05:00

♥

A rut or sticking with what you like?

2012-01-18T15:45:00.006-05:00

Emily has decided that she likes to color on these wooden pieces

She has now selected to do this 3 times in a row. Tonight I am going to take these away as a choice, I don't want to get stuck in a rut.

She has been doing SO well at school, the reports have been so good. I really hope this upswing continues. She's also making great strides towards making her own sandwich. Just so proud of her.

365:17

2012-01-17T13:18:00.000-05:00

365:15

2012-01-15T13:07:00.000-05:00

Demon dog goes to the dance

She loves to paint!

2012-01-12T22:35:00.004-05:00

Today we painted these plaster magnets and we had a lot of fun

Em loves to paint and she went right to it, she's gotten very good at dipping her brush in without making a total mess

Still a full contact sport!

This was a great project, Em was SO into it and did a great job :)

Tuesday there was no school

2012-01-12T21:56:00.011-05:00

We had no school on Tuesday so Emily crafted with Steph, when I was done with work she was all crafted out :( Emily and Steph made snowflakes and they did some coloring.

On Wednesday we did sun catchers :)

She decided that she was done at this point and started to color on herself

Finished sun catchers :

Steph stayed late and helped us and we also did some (or a lot) of paper snowflakes :)

I'm SO thankful for Steph, she's a blessing to our family.

365:10

2012-01-10T12:32:00.000-05:00

Learning to sew

2012-01-09T15:48:00.011-05:00

On Friday Emily was tired and honestly so was I so we did an interactive story on the iPad rather than a craft, it was actually quite fun.

On Saturday we did this craft

We did the bear together (why start with a small heart when you have a large bear)

Things went well with this project so long as I kept my finger as a marker.

Oooops! We got tangled a time or two.

SHE DID IT!!! :) although she wasn't near as excited as I was

We didn't do a craft on Sunday because we did some shopping and then it was football time. Emily LOVES watching football (I am not even kidding).

365:9

2012-01-09T12:30:00.000-05:00

365:8

2012-01-08T12:28:00.000-05:00

Football Sunday

365:7

2012-01-07T12:23:00.004-05:00

365:6

2012-01-06T15:33:00.000-05:00

365:5

2012-01-05T16:31:00.000-05:00

Egg carton flowers

2012-01-04T21:23:00.008-05:00

Today I had the bright idea to make flowers out of an empty egg carton.

I cut the egg cups out of the carton and then we colored the inside. As you can see, Emily colored on the table because it was a lot more fun than coloring those little cups.

Stephanie and Nicole got in on the action too.

Emily really didn't like doing this project, I don't think she got anything out of it at all :(
The finished product:

In other news Joey's trombone was finally fixed and he's a very happy boy

365:4

2012-01-04T19:00:00.000-05:00

Cupcakes!

2012-01-03T20:30:00.008-05:00

Today Emily and I did foam cupcakes :)

Emily really enjoys sticking pieces onto the foam so this was sort of a cheat ;)

The first one

The second one :)

Here are both of the cupcakes :) it was a lot of fun

Happy 2012!!

2012-01-02T20:08:00.009-05:00

HAPPY New Year! I hope you had a great NYE :)

Yesterday, after Emily's bath I had to work several knots out of her hair. Emily hates to have her hair brushed so working knots out is something she's really, really not a fan of. After I was done combing it out she walked into the kitchen, grabbed my Diet Coke and emptied it down the drain. She gave me a snotty "humph" and then put herself into time out and smiled. SUCH A BRAT!!! It was so funny. For a child that cannot verbalize her wants and needs she sure gets her point across.

A craft a day? I have this crazy idea that Emily and I are going to do a craft a day together. Yesterday we did this craft and it stunk because the peel off backing on the pieces were very difficult to peel off.

TODAY we did Shrinky Dinks and things went much better.

Emily did a pretty good job at coloring on them.

I haven't done Shrinky Dinks in a very long time and I accidentally took them out too early. Ooooops!

I put them back in and they came out so cute :)

Emily sportin her new bracelet.

This was a pretty fun project :)

Welcome summer :)

2011-06-21T16:40:00.002-04:00

WOW! Another school year has come and gone, it’s always a little bittersweet.

Joey finished his sophomore year and though we don’t know his final grades yet he should remain on honor roll; we are so proud of him. Joey also got his license and got a job, he’s doing all the things he should be right now and I am ineradicably proud of him. I sure hope the job works out and that he can find a car.

Emily finished her 3^rd grade program and is heading on to 4^th grade. This was a good year for her and now that we have her meds in check I think 4^th grade will be an even bigger success. I had been having this nagging thought that I wasn’t doing enough for her because she wasn’t in a strict ABA program for kids with Autism, after talking with the rest of the team we thought it best that we go check the Autism program out to see if it would be a better fit for her; it wasn’t, not at all. I am very happy with where Emily is, I am also very happy I went to go see the other program and erase my doubts.

I pray this summer goes well, that we have sitters that will stick with Emily and that everyone is safe.

Looking forward to a summer of fun J

I know someone wants to adopt her

2011-04-29T10:40:00.003-04:00

It was my goal to adopt her, I know she needs out of where she is and I know that Emily would do well to have a sibling that is closer in age and I know that we would love her but we just can't do it at this time and she NEEDS a family NOW. SO, I ask you to help her, adopt Delia. i know that someone out there has the money to get started and if you commit to adopting her I will do whatever I can to help you get her home.

o no she didn

2011-04-28T08:26:00.002-04:00

Every time I reprimand or raise my voice to Emily she takes her right hand and taps it to her chin. All this time I thought she was saying "shhhhh" but with 4 fingers instead of one. Well, yesterday her sitter comes over and says "do you know what sign that is?" I tell her I didn't know it was any sign and that I think she is just shushing me she says "well I am sure it's just a coincidence, but, that's the sign for bitch!" Like O-M-G no she didn!!!!! :|

Now, I know my little angel is doing no such thing but...........makes ya wonder don't it

So.......go ahead and look http://www.signingsavvy.com/sign/BITCH/6103/1

Easter and Clonidine

2011-04-27T16:42:00.006-04:00

We had a very nice Easter, it was low-key but nice. Holy Saturday Joey and I went to mass, it’s a very beautiful mass but it’s very long. I miss my siblings and their families SO MUCH, it always feels like something is missing on the holidays without seeing them.

Eggs and the basket

Easter loot :)

Actually got Emily to wear a dress :)

Clonidine update--- changes I see at this time she is falling asleep faster and she isn’t hitting herself so much. Her impulsivity is NO better.

She is dumping stuff so much it’s pretty friggin crazy how she goes through a room a tornado. HAVE. TO. MAKE. IT. STOP…..

April 22nd is a busy day

2011-04-22T08:51:00.004-04:00

Today is my anniversary, 5 years ago today I married the love of my life. This was not an easy path. We are HS sweethearts that had broken up and gotten back together more times than I can recall but we finally found our stride. It’s not always easy, we are two very stubborn people and compromise can be hard. Compromise is an essential part of any marriage and I think only now are we mature enough to really get that. Happy anniversary Billy, I can’t wait to see what tomorrow holds for us.

I had hoped that by now we would have been able to adopt Delia but it just seems there is one block or another. I keep tweeting and keep hoping and keep praying that someone out there will be able to adopt her, maybe on this day someone will see and say “that is the child for me, she doesn’t belong in an institution she belongs at home with me” Here is Delia, she is 10 and by now she has spent several years in an intuition in really bad conditions http://reecesrainbow.org/delia-8-1

Three years ago today we buried my dad. It seems like so much longer. I miss him every day there always seems like there is something I want to tell him. I am sad that he won’t be at Joey’s confirmation in a few weeks, he would be so darn proud of the young man that he has become. Dad, I miss you, you are never ever far from my thoughts or my heart.

My dad and I at my sweet 16 :)

Finally, HAPPY EARTH DAY :)

Woolite Rug Stick

2011-04-18T09:09:00.002-04:00

I've said it before but I have to say it again, the Woolite Rug Stick ROCKS. Thank you Woolite :)

Med changes

2011-04-15T18:00:00.005-04:00

It would be nice if life was boring, it would great if I could just find my footing in life; specifically where Em is concerned, but I cannot. Em had been on Medidate to help with her impulsivity and, at first it seemed to work, seemed to take the edge off, but, she stopped eating. No food led to increased irritability and increased aggression; we put her on a medication to increase appetite. This new med made her tired, cranky and more abusive to herself and others; we took her off of both meds. She’s been med free now for over a week, she is eating, impulsive, self destructive and defiant.

We were frustrated, her teacher was frustrated and we were all tired.

I took her to Boston Children’s (love them) to talk with the team there about how to stop her from beating the hell out of herself and others. We talked for a good deal of time, I love how really interested they are in what has been going on and how complete a picture they want of her; just not something you get with your typical doctors. The lead dr. suggested we put her on a new medication Clonidine, took blood to run tests for vitamin and mineral deficiencies as well as tests for thyroid and Celiac disease. We are waiting for all of that to come back until we start with the new med.

I am cautiously optimistic.

It is nice to see her eating again, when she isn’t in an aggressive mode or having a tantrum, she really is happy. It’s easy to think get caught in the negative and miss the good times. Going to Children’s always has a way of snapping you out of your pity party because the truth is things aren’t so bad, things can always be a helluva lot worse.

In cool news I had given to the 7 day blitz for Kirill and I actually won something!! I won a frame of my choice from The Organic Bloom, Generously donated by Lndsay Smith of Lindsay Smith Photographycan't wait!!!

My week off

2011-02-25T14:55:00.001-05:00

I was very happy to have this week off with the kids. Well, mostly Emily since Joey hung out mostly with his trends. I learn a great deal aboult Emily when it's just her and I. I am fortunate to have a job but I often wish I could have the luxery of being a sahm.

Today it's snowing so we're staying in. I am thankful for this past week.

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?

2011-02-15T10:15:00.003-05:00

Published with Blogger-droid v1.6.7

Droid

2011-02-15T10:15:00.001-05:00

Thanks to t-mobile and their fantastic sale, Bill and I ended up with new phones for Valentine's day :) I love this Droid phone, so intuitive unlike the blackberry which was a fight everyday.

In other news I hear warmth is coming. :)

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Grrrr just do what you are supposed to.

2011-01-26T17:44:00.003-05:00

It has been 15 months since I started the process of getting Emily a communication device. She went through all of second grade and half of 3^rd grade without her permanent communication device. I could have had a baby, open heart surgery, recovered from open heart surgery and an appendectomy in that amount of time.

My daughter cannot talk; at all. She cannot come into the kitchen and say “I want milk”, she can’t say “I want to go out and play” she can’t say “mom, my stomach hurts” so what we live with is one huge ass game of charades. We do use some PECS and have used TapToTalk (until last week) but those are just one word meanings and My daughter has A LOT to say but with no way to say it she acts out, banging her head on the ground or the wall, smacking herself or others, screaming, crying and kicking. It isn’t her fault, she doesn’t want to act out but she has no other way to get her needs met. Here’s an example, the other day she wanted popcorn…no prob she can get that herself so she got the popcorn and then opened the cabinet with the bowls but she’s too short so I got her a bowl, opened the popcorn, put it in the bowl and gave it to her. She began to cry and I said but you asked for popcorn, eat your popcorn. Then she started to sob and I became angry because I thought she was just being a damn brat crying after she had gotten what she wanted. Finally, through a series of exasperated motions I understood that she wanted the pretty bowl and I had given her just a regular plastic bowl. I gave her the pretty bowl and she was so happy, and smiled eating her popcorn….meanwhile I was standing there wondering WTF just happened.

Emily had a device, it didn’t work for her so we decided the iPad would be best so that she could have programs for both communication & ABA. This was in November, I was told it could take a few weeks. OK so there were the holidays, then we moved and yes, I should have emailed the day we got back from break but I spaced it. I email on the 11^th asking about her iPad and was told they didn’t get my case choice (I sent that to them on 11/22/2010 but she said she didn’t get and asked that I resend it, so I do and then wait. Nothing and then I call…nothing. SO comes to yesterday and I send an email asking what is going on? Radio silence. Today I call and the receptionist actually connects my call. Turns out she hasn’t ordered the iPad yet and still has no email from me. I told her to stop talking, that my daughter can’t talk and so neither could she. She was stunned, I could feel it. I told her to forget it, that I was going to the state and reporting her and her agency for violating my daughter’s rights. I get off the phone and send an email to both her and her director. The email wasn’t mean but it was certainly direct. I get a call minutes later telling me that the device will be here Friday maybe Monday depending on the weather. I thank her and she said she had to because she didn’t like getting yelled at and I said told her there was nothing, nothing at all about this process that I liked. I hung up the phone.

I will never understand why people make me bitch them out. I will never understand why things have to be so damn hard, I will never accept my daughter being treated poorly and if you treat her that way I promise you that I will fight you back.

Ahhhhhhhh releasing it all is soooooo nice.

Do they know it Christmas time at all?

2010-12-06T13:32:00.003-05:00

I haven’t blogged in a VERY LONG time but anyone that really knows me knows that when I shut up it’s cause my brain is full up to the top. There are some things I wanted to share.
Happy Holidays, whatever it is that you celebrate or don’t celebrate; I wish you a happy, healthy and sane holiday season.
I miss my dad a lot these days, I really needed to call him and talk to him and couldn’t. It sucks. I wish he was still with us, wish I could tell him some stuff, wish I could just hear him again.

So the other thing on my brain, something I am dreaming about, something never far from my front and center are the orphans posted at Reece’s Rainbow. Most of the orphans have Down syndrome, most of them are living in conditions we wouldn’t allow our dogs to live and all of them need a family. I can’t help but face the reality that my Emily with her extremely limited speech and behavior issues would be carted off to one of the many mental institutions and left to rot there. My baby girl has been given an incredible opportunity to have a full life simply because of where she was born. EVEN IF we were on welfare and had far less material goods we would still have FAR more than any child her age in one of the Easter European mental institutions. I believe the people who work at the institutions want to love and care for these children and adults the best way they can but they simply do not have the resources and even when given money, it isn’t used in some of these homes. Let’s take for example Paula, Paula is 4 years old and she’s been institutionalized already!!! At the age of 4, it was determined that her life had peeked!! That this was as far as she was gonna go. Someone needs to save her, with love she can go far, with therpy she can go further.

If you could go to the Reece's Rainbow Christmas angel tree and click ctrl+F put Paula #22-1 in the search box and donate what you can.

Thank you,

Maria

NY=family and food

2010-08-16T23:41:00.001-04:00

Last weekend my sister, the kids and I decided to take a last minute trip to NY to see my family. I miss my family very much. It had been about a year ago that I had seen my siblings but two years had gone by since I had seen many of my nieces and nephews. Two years is a long time.

The last time we had all been together in that house it was for my dad’s funeral, being there this time was awkward and kind of sad. I missed him being there, it’s sad to me that he’s missing out on his grandkid’s lives, he thoroughly enjoyed his grandchildren and they really loved him.

It was great to see all the cousins enjoying one another; it was great to visit with everyone. We had some FANTASTIC food, hates off to LIL for cookin up a feast. I miss my family all the time. I wish my other brother and his family had been there. I look forward to the day that we will all be together again.

While I was there I had taken Emily for a walk around the block. I enjoyed seeing all the homes, how they have changed and many of them have new families, young families just starting out. I had some good times in that “hood” hangin with my friends. It’s a place that feels so familiar and so foreign all at the same time now.

It was an exhausting trip, well worth. Oh and you people who remain there, you are insane for putting up with that traffic.

Remembering Blake

2010-08-10T21:38:00.003-04:00

My friend Allison lost her son Blake on Saturday. Blake was 14 and headed to High School this year, this was to be such an exciting time. In an instant the course of Allison’s life was changed.Blake fell and the fall led to a clot. Blake had Duchenne Muscular Dystrophy (this was not the cause). Allison, has been an encouragement in my life, she has been through so many changes with Gage. I cannot imagine her pain. If you pray, could you please spare a few for Allison and family as they face this unbelievably hard time.

It’s important not to take things for granted. It’s easy to get wound up with the things that aren’t going right in your life, it easier to see what’s not going your way and be negative be rather than count the blessings in your life.

Quick post about the Ds convention

2010-07-23T09:40:00.010-04:00

WOW! It’s been such a long time since I have written. I find myself wanting to write about once a day but the day gets away from me and before I know it, I’m exhausted and going to sleep.

Last weekend I went to the annual National Down Syndrome Congress convention and it was both informative and overwhelming. There were so many people and they all had so much info to give. I got to see Dr. Capone speak and let me tell you, this man did not disappoint. He had a lot of encouraging information to give about sleep disturbances (have iron checked) impulsivity being alleviated with Risperidone and how Risperidone even helped to alleviate “foggyness” and increase cognition. I have wanted to look into Risperidone but have really been hesitant to do that, until now. I have to say, it was sooooo refreshing to be in a room full of parents that are going through much of the same things that we do on a daily basis. Emily isn’t a typical child with Down syndrome. Emily’s behaviors make it hard for people to accept her. People with children who have typically developing children with Down syndrome don’t understand that just disciplining her more isn’t going to “fix her”. Billy and I have made a conscience effort to distance ourselves from most people because they just don’t get it and their comments just make us shake our heads. It was nice to be in a place where I didn’t have to explain or be looked at like I am a parenting failure.

I also went to a discussion based on the Downsed system of reading. I really think that this could help Emily, so much so that I ordered the reading kit as well as the Math kit. I am excited and hopeful that this will work.

It wasn’t all work, I did enjoy some much needed down time. I got to see one of me BFF’s and it was such a great time. I sat in the pool and absorbed the sun (read got burned) and I had a couple of drinks even. OH and of course reconnected with friends from past events and made some new ones.

Saint Raymond

2010-06-22T15:24:00.004-04:00

This past Sunday I was doing the laundry and noticed that attached to a towel was a a St. Raymond medal, it had become tangled up with a thread on one of the towels. This is peculiar for a few reasons 1) I don't own a St. Raymond medal 2) my father's name was Raymond (RIP pops) 3) It was father's day. I thought the medal must be my son's (given to him by his grandpa) but he said no, hmmmmm. My stepmother was here last week so I thought maybe she had left it behind for us, I called her but it turns out she did not leave the medal and said that my father, oddly enough, never had a St. Raymond medal (I don't believe that though since he was forever giving me medals). It's very strange and more than a little spooky to me. For those of you that don't know what a Saint medal is, here ya go.

SO I guess the question is what do I do with this chilling medal LOL

PLEASE help my friend Traci

2010-06-16T13:08:00.004-04:00

My friend Traci is working on adopting a baby and she needs your help. PLEASE

Amazed

2010-05-24T13:24:00.000-04:00

I am just amazed at how much better Emily’s behaviors are. I am just amazed. I went to the store with her on Sunday, just her and I and we had to do the week’s shopping for the house. She walked down the aisles with me and didn’t knock anything off the shelves, didn’t hit anyone and didn’t grab anyone’s glasses of their face. She did refuse to walk a couple of times, wanting to sit in the cart and just not wanting to walk but the thing is..there were other kids in the store whining about wanting to sit or wanting to be done.

Sometimes, progress can be so slow; it’s like watching the grass grow. But, like watching the grass grow, one day you wake up and the grass is now green and upright rather than the wilted brown that was there yesterday. I need to keep reminding myself of that.

It's almost IEP time

2010-05-14T11:28:00.000-04:00

So much has been happening in life that I haven’t had the time to sit down and write. Really, when there’s a lot going on I often am sik of talking about it so writing it doesn’t appeal to me.

I had a wonderful mother’s day. Joey and Billy made a wonderful brunch for my sister and me. We had an easy taco dinner and the day was very easy going and well, perfect.

The meds are helping Em. She has become a bit calmer, bit more level, bit less high strung. It’s a relief for our family. She still has periods where things are not good and the communication issues are ever present but she is overall a much more level child. Also on the Emily front, I am preparing for her IEP which will be first or second week of June. I’m not sure where to head with reading; I assume sight words are the right road but it just seems so out of reach.

Today is progress report day; let’s hope that Joey doesn’t lose his iPod due to poor grades.

Billy is going in for knee surgery today. He tore the meniscus (OUCH) and so he is finally getting that repaired today.

Promise Seen in Drug for Fragile X Syndrome - NYTimes.com

2010-04-30T14:34:00.000-04:00

Promise Seen in Drug for Fragile X Syndrome - NYTimes.com

Interesting stuff going on.

Survey says!

2010-04-28T19:10:00.002-04:00

Autism!!

Emily officially has the label Autism; as a matter of fact the psychologist stressed that the this point Autism is her primary diagnosis. They want Emily to have 25 hours of intensive discrete trial ABA therapy. It was suggested that she have ABA at home as well. They told me that an inclusive setting wasn’t the rights setting for Emily and agree that we did the right thing by putting her into a self-contained setting. We talked about Emily enrolling at a school specifically for individuals with Autism. The psychologist suggested that I try to get the school to work with her needs but that we shouldn’t waist too much time fighting if they didn’t see fit to meet her needs.

They want her to have a sleep study, neuro exam to r/o seizures and they want her to join a structured peer group.
Did I leave anything out? Probably!

Tomorrow

2010-04-27T20:55:00.001-04:00

Tomorrow is results day. I make the trip back down to the May Institute to hear what their conclusion is. I am scared to death. Part of me is scared that they won’t agree about her having Autism. If they don’t agree; what’s the next step? What if they do agree? Will she ever talk? How can she “just” have Down syndrome? How can all of this be “just” Down syndrome? Typically, kids with Ds can talk, they can learn: not to dump stuff, not to hit people, not to knock glasses off people’s faces. If this is just Ds with ADD thrown in; what’s the next step?

OR I could just stop thinking, head down tomorrow and hear them out.

ABA???

2010-04-16T17:55:00.000-04:00

I woke up this morning and it was snowing….S-N-O-W-I-N-G……………….

On Saturday we started Emily on Metadate CD. Her pediatrician disagrees with this path, but, I felt we had to at least try it and see. The first few days were rough, she was very cranky and whiney (lord I hate whining), but things seem to have evened out now and she really does seem a little more calm and focused. I am waiting a few more weeks to make a determination about effectiveness.

Had a brief meeting to see if Emily qualifies for ESY, she did (shocking!!!!!) We will be having her IEP in May or June, I’m not too worried about it this year because I adore her team and think we are all singing the same tune. What a difference a year can make. The one component I am thinking of adding in is ABA, I’m not really sure which way to go with it. Honestly, I’m not really sure what she would/would not get out of it. If anyone has any thoughts or experience with ABA I sure would love to hear about it.

WOW what a weekend

2010-04-05T12:49:00.004-04:00

The temps on Saturday hit 80degrees!!! EIGHTY degrees, early April in NH; unheard of! We spent most of the day outside playing and washing cars on Saturday. Emily was so dirty; it was nice to have that look back on her. We got to test the swings and break in a whole new bunch of sidewalk chalk J. People were so happy all weekend.

Sunday we did more playing and then had Family over for dinner. Dinner turned out great except for the bread that I tried to make, I undercooked it a bit. OH Emily got ZhuZhu pets and she’s in love. For the record, I don’t believe in large gifts for Easter, but Em doesn’t eat candy or anything like that so she got ZhuZhu pets.

Wednesday Em and I are headed to the May Institute for her testing. I can’t wait until it’s all over and we get the results. This has been an exhaustive process.

The only pic I have is this one from my crappy BlackBery camera. I really miss having a better mobile camera.

Emily with her Zhu Zhu's

Good things

2010-03-26T11:45:00.008-04:00

Happy to report, we ran into some funding for Emily to have a behavioral therapist here at home..........Can I get an AMEN! Hopefully that will start in the next week or two. I hope this puts and an to some of her more impulsive crap.

Joey's filled out his first job application (for a little ice cream place) he's well on his way to saving money and buying a car next year (GULP!!)

Now for some Yummie

You KNEW it was coming.

2010-03-24T14:40:00.003-04:00

When Obama ran, he cited health care reform as one of the first things he would do. He won. He reformed health care. He won by a majority of the votes in the USA and he did what the majority wanted him to do.

He kept his word. Now, I expect Rush to do the same and get the hell out of the U.S.A!!!!

If you don’t think the government can mandate that you have insurance, think again. Every day you do things that the government mandated. Hell, right this very minute my earnings are: funding a war that I don’t agree with, paying for the bank that made risky and careless loans, paying for the stockbroker to go to a spa. Did you bitch when you go an extra tax check in the mail? NO! You spent that check like you were ghetto fabulous! Do you really believe that that money was free?

I’ve heard a lot people shouting that congress shall make no laws that tread on us. UMMMMMM WHAT!!!! NOWEHERE does it say that. The text of the First Amendment Reads: “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.” Is healthcare against your religion? Does healthcare violate your right to gather? NO!

I wish people would take a moment and look into things themselves rather than just blindly listen to what people say on talk radio.

It sucks when your government isn't acting the way you think it should. Anyone who knows me, knows that I was not happy when we went to Iraq and I lost a few friends over it too. I get that part. I just don't understand what about health care coverage has you so bloody mad.

HAPPY WORLD DOWN SYNDROME DAY :)

2010-03-21T19:50:00.004-04:00

Today is World Down Syndrome Day. It’s on 3/21 because Trisomy 21 (Down syndrome) means that a person has 3 copies of the 21st chromosome and not the typical two. Much love to all the fantastic mom’s and beautiful mom’s I have met, all because of one extra chromosome.

Behavior issues revisited. Emily’s behaviors have become somewhat worse. We are having real problems with her: listening, teeth grinding and the dumping, ohhhhh the dumping its back bigger and badder than ever. I thought we were going to get some relief in the form of medication but my pediatrician is hesitant to do that. If we could just have SOME thing to help with her impulsivity, it’s so frustrating, not knowing which way to turn with it all.

Happy St. Patrick’s Day

2010-03-18T09:47:00.006-04:00

We had a wonderful day dinner with family and friends. It was so nice to relax and enjoy. For dinner I made Corned beef & cabbage with potatoes and carrots, Irish soda bread and for dessert Guinness cupcakes with Bailey’s frosting YUMMMMM.

For the corned beef I open a bottle of Guinness dump it into the pot and then put the corned beef in and simmer on low all day long. An hour before dinner I put in quartered potatoes and baby carrots, when the potatoes are done and take everything except the broth out of that pot and add to the boiling broth my cut up cabbage (Billy doesn’t like cabbage so I don’t mix it all together) and boil for about 10-15 min & then serve it all up.

The Irish soda Bread recipe I got from the barefoot Contessa http://www.foodnetwork.com/recipes/ina-garten/irish-soda-bread-recipe/index.html
Ingredients

• 4 cups all-purpose flour, plus extra for currants
• 4 tablespoons sugar
• 1 teaspoon baking soda
• 1 1/2 teaspoons kosher salt
• 4 tablespoons (1/2 stick) cold unsalted butter, cut into 1/2-inch dice
• 1 3/4 cups cold buttermilk, shaken
• 1 extra-large egg, lightly beaten
• 1 teaspoon grated orange zest
• 1 cup dried currants
Directions
Preheat the oven to 375 degrees F. Line a sheet pan with parchment paper.
Combine the flour, sugar, baking soda, and salt in the bowl of an electric mixer fitted with the paddle attachment. Add the butter and mix on low speed until the butter is mixed into the flour.
With a fork, lightly beat the buttermilk, egg, and orange zest together in a measuring cup. With the mixer on low speed, slowly add the buttermilk mixture to the flour mixture. Combine the currants with 1 tablespoon of flour and mix into the dough. It will be very wet.
Dump the dough onto a well-floured board and knead it a few times into a round loaf. Place the loaf on the prepared sheet pan and lightly cut an X into the top of the bread with a serrated knife. Bake for 45 to 55 minutes, or until a cake tester comes out clean. When you tap the loaf, it will have a hollow sound.
Cool on a baking rack. Serve warm or at room temperature.

**I made it the night before and stored it in a very large airtight Ziploc bag, warmed it up before dinner**

I got the recipe for the cupcakes here http://www.recipezaar.com/guinness-cupcakes-with-baileys-frosting-360499

Ingredients
Cupcakes
• 1 cup unsalted butter
• 1 cup Guinness stout
• 2/3 cup Dutch-processed cocoa powder, sifted
• 1 cup light brown sugar
• 1 teaspoon table salt
• 2 cups all-purpose flour
• 1 cup white sugar
• 1 1/4 teaspoons baking soda
• 2 eggs
• 1/2 cup sour cream
Frosting
• 1/2 cup unsalted butter
• 4 cups confectioners' sugar
• 1 pinch table salt
• 3 tablespoons irish cream (Bailey's or Carolan's)
• 1 tablespoon milk
• green sprinkles
Directions
1. Preheat oven to 350°F Grease 24-30 cupcake cups, or fill with paper liners.
2. In a saucepan, heat the butter, Guinness, cocoa and brown sugar, whisking often, until the butter is melted and the mixture is smooth. Remove from heat and allow to cool to room temperature.
3. Into the work bowl of a stand mixer (or into a large mixing bowl), sift together salt, flour, white sugar and baking soda. Add the cooled Guinness mixture and beat on medium for 1 minute. Add eggs and sour cream and beat on medium for 2 minutes or until smooth.
4. Divide the batter evenly amongst the cupcake cups. Bake in preheated oven 20-25 minutes, or until a toothpick inserted into the center of a cake comes out clean. Cool in pan 20 minutes, then remove and transfer to a cooling rack until completely cooled.
5. Meanwhile, in (cleaned) work bowl of stand mixer, cream butter until very light and fluffy. Add salt, and slowly add confectioners sugar. Do not run the mixer above low, or the sugar will spray all over your kitchen. Add a couple of spoonsful at a time until it has all been absorbed into the butter. Add Bailey's and milk until spreadable consistency is achieved.
6. Frost cupcakes with Bailey's frosting. Sprinkle with green jimmies.

***I used a little less Bailey’s and a little more milk***

Words matter

2010-03-03T09:21:00.007-05:00

I can give you so many examples of when words hurt. Think back to school or other situations where you were teased, seen kids teased OR been the one to do the teasing. It hurt, it sucks and I bet as an adult you don't use those teasing words anymore.

Add this to the list of things you no longer say or think, expand your vocabulary to come up with ways to substitute for this word.

March 3 is End the R-word Day. Help Spread the Word to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word! Pledge your support at http://www.r-word.org

Family, fun and food

2010-03-01T10:10:00.003-05:00

This past weekend we celebrated my Mother in law’s 60th birthday (everyone please say Happy Birthday Barbara). Included in the festivities was my brother in law who flew up from Florida to surprise her. It’s so nice to spend time with him because we don’t get to see him as often as we would like. The party was a lot of fun and I am thankful that Mother Nature didn’t destroy us with snow. My Sister in law and I made the food and directed the setup, nobody died and it went off very well.

The kids were off all last week for winter break and they had an additional day off today because a lot of the streets in Manchester are still closed due to downed power lines and trees. My girly is going to have a real short week this week since we have to go to Crotched Mountain on Thursday. She needs to get back into school though and we need our routine back.

Birds are chirping outside.........gives me hope that spring is near.
It’s March, so there are a few more parties in our future :)

My dream last night

2010-02-25T10:58:00.000-05:00

Last night I had a dream, Richard Simmons along with a bunch of gay men were in it. We were on a cruise and we had to walk across the water to get to an iceberg to pet the seals. We made the most of it and did a Conga line to the iceberg. There was a house in the middle of all this ice and coldness so I asked Richard why anyone would live in such a cold place, he said “some men need to do stupid things to prove to themselves and the world that they are men” WE LAUGHED. We sat and talked with the seals a while and then Richard, the men and I Congaed back to the boat (it was a Carnival cruise)

What does it all mean?

This and that

2010-02-22T10:09:00.002-05:00

I’m happy to report that since January 4, 2010 I have lost 11.5 pounds. GO ME :)

Yesterday, in our house Barney died. Barney was a happy soul with a song in his heart and much pep in his big purple step but apparently Emily had grown tired of him and decided it was time to put him out of her life, forever.

I felt like crap this past weekend, had some sort of damn nasty bug. I am feeling better today but still not 100%

The Family Guy takes on Down syndrome. Recently the Family Guy did an episode involving A young woman named Ellen who has Down syndrome. When Chris takes her out on a date and asked about her family the young woman responds that her mother is the former Governor of Alaska and her father is an Accountant. Obviously, the bit was supposed to poke fun at former Governor Palin. When asked how she felt about it Palin was of course upset, outraged, and wanted their heads on a platter. However, just a few weeks before she defended Rush Limbaugh by saying that he had used r****d as satire and NOT as an insult. Well, let’s apply the dictionary meaning of satire to the Family Guy bit and see if it works:
• satire /s'ætaɪəʳ/
Synonyms:
o noun: lampoon, squib
o satires plural
3. Satire is the use of humour or exaggeration in order to show how foolish or wicked some people's behaviour or ideas are. N-UNCOUNT
 The commercial side of the Christmas season is an easy target for satire.
4. A satire is a play, film, or novel in which humour or exaggeration is used to criticize something. N-COUNT
 ...a sharp satire on the American political process. + 'on'

You decide. I would post the transcript of what Rush said but it uses the R word over 50 times! I don’t need that sort of crap on my blog. Personally, I think that any time Palin is made a fool its fine by me. I think Palin is a fool and she has proven that over and over again. I think poking fun at her kid is a shitty thing to do and it should always be hands off. Not because her child has Down syndrome but because her kids did not choose to be part of the circus that is her life.

Why would you say that in front of me?

2010-02-03T09:35:00.001-05:00

This past Saturday I went to a workshop presented by ABLENH on advocating at the legislative level. This was a very informative and inspiring workshop that really made me feel empowered

Emily has been taking Zantac for 2 weeks now and we do notice less throat clearing and gagging, it’s GREAT. I wonder if she notices it too cause she hasn’t been fighting the meds. She did very well all last week and so far this week with circle time in the morning. This is something Em hasn’t been able to sit through yet in her life because her attention is too short and she usually acts out to get out of it. HUGE HUGE step in the right direction. We still have to schedule the sleep study and go see the psychologist.

We are going gluten free OR reducing the gluten in her life because she has tested negative toan allergy to wheat and negative to Celiac but we are gonna see for sure
So Emily has been having an LNA come over to keep an eye on her in the afternoons to make sure she is safe. To say that this hasn’t worked out well is a bit of an understatement. So far she has neglected to intervene when Em was choking, she neglected to change Em when she spilled water everywhere, she didn’t stop her from breaking dishes, she got hurt here and was more worried about the drug test they wanted her to take than anything else, she told me about her fear of cops and the pièce de résistance…….she called herself a retard for doing something wrong!!!!!!!!!!!!! Needless to say this situation isn’t working.

Pazapa

2010-01-25T11:20:00.002-05:00

It looks like there is a center that has been helping for decades named Pazapa. It seems they took a heavy hit and need help. Their site their blog their FB page

Haiti

2010-01-25T11:12:00.000-05:00

I can’t stop thinking about Haiti; more specifically I can’t stop thinking about the people of Haiti that have Down syndrome and other developmental disabilities. What has happened to these people? If this tragedy has been hard on the person without delays what must it be like for people who are? If they lived at home did everyone get out? If they lived in group homes, did the caretakers stay with them? There is NO WAY Emily could care for herself, if something huge happened like this here Emily wouldn’t know where to turn.

I would like to know how I can help the disabled of Haiti.

You're just full of it

2010-01-21T08:42:00.002-05:00

Dr. Skotko called and Em is indeed backed up. We are on the Miralax highway....jealous?

We started the Zantac this morning; she drank it down like a champ.
I am exhausted, I feel like I can’t quite get enough sleep. Maybe, it’s all of the action this week, lots of changes. The kids have done great though.

In other news we switched the kid’s rooms around earlier this week. We’ve had a few bumps but all in all we are getting everything back together. I put down a foam tile floor in Em’s room and it ROCKS. The floor has been a dream to clean up and with Em there’s always a cleanup. We need to paint Joe’s new room and complete the process of making it his.

WOOOHOOOOOO it's swing day :)

Down syndrome clinic

2010-01-19T20:03:00.007-05:00

WOW what a day!!!

Today we took Emily to the Down syndrome clinic at Boston Children’s. It was a fantastic experience all around.

We met with Dr. Brian Skotko who sat with us and went over Emily’s history in total. We spoke about the possibility of an Autism or OCD or ADHD dual diagnosis. Dr. Skotko agreed that based on history and what he was seeing, there is a strong possibility of Emily having Autism; we are meeting with a psychologist.

After we spoke about things that could lead to a dual diagnosis we spoke about communication and Emily will be going back to Boston to b evaluated for a more comprehensive augmentative communication device than the TapTotalk she is using now.
To get a clear picture of all factors that might interfere with behavior/communication we are gonna get a sleep study done (OK one is being ordered stay tuned to see how it goes). I really have no idea how in the world this study is gonna happen

Then it was on to talking about GI. Emily quite often chokes while eating so she needs a GI workup, she has had swallow studies but Dr. Skotko is interested in finding out if the acid from reflux has done lasting damage. We are starting on Zantac.

We rounded out the day with a visit from nutrition…….turns out we are good in that department…………talk about irony.

I LOVED how everyone came to our exam room and we stayed put. It was so much better for Emily (and therefore us) not to have to room/floor/building hop. We go back in 2 months to talk over the outcomes of all of the tests and appointments and to come up with a plan……………it was a great day.

SO here’s a funny…………Dr. Skotko wanted an x-ray of her stomach which meant we needed her to lay naked on the x-ray table. I got her all into position (so I thought) and thx ray tech came over to adjust her WELL she flipped cause some strange dude was touching her. She hoped off the table and starting running around the room. The X-ray tech was mortified and I was too embarrassed and stunned to be mortified. Finally got her back into position and we had great success in getting her picture :)

Welcome 2010

2010-01-03T20:09:00.000-05:00

Christmas was a nice time. Good food, good company and some great gifts. Emily and Joey were very happy with all of their gifts. It was so nice to see Emily playing with all of her new toys, she really enjoyed them all.

Emily’s behavior on Christmas night was a bit out of control. The impulsive dumping of glasses, knocking crap over and hitting really is getting old.

On New Year ’s Eve we stayed home and had a quiet evening playing games and munching. I love those types of NYE’s just hangin at home with the family, safe.
I hope 2010 is gentle to us all.

Most wonderful time of year

2009-12-14T09:09:00.003-05:00

Busy busy time of year. I'm sure that everyone is busy this time of year but it's a good kind of busy. It's fun (for me) to be able to pick out gifts for my loved ones that are going to make them smile. Christmas is my most favorite time because everyone is nice. If people kept the love in their hearts that they felt at Christmas the world would be a far better place.

The TapToTalk is going well with Emily. She is getting the hang of it and I can see this really helping us a lot. The one thing that's taking a bit for her to get the hang of are the "levels" because she is used to her book which is all one level but with the TapToTalk she has to figure out that she has to press snack to see applesauce as a choice.

It was a relaxing weekend and I got SO MUCH cleaned, I feel so good when things are tidy. It's just so hard to get the people that live in this house to help with it.

The snow

2009-12-10T11:02:00.001-05:00

has landed (hahah) and I'm so not happy. I really hate the feeling of being cold, I find it sooooooo annoying but worse than that I just can't ever seem to really warm up once the cold settles in.

TapToTalk

2009-12-07T19:30:00.003-05:00

Today I finally ordered the Taptotalk I can hardly wait to get the starter pack. I have already started setting up the images and sounds so that when the starter pack gets here I will have some things in place for Emily. I figure we can see how it goes and let her direct what words to add/subtract.

The Taptotalk guys were very helpful over the phone.

OH and if you are looking for a cheaper DS try your local Gamestop for a used one.

Last night at dinner

2009-12-03T08:53:00.001-05:00

BTW I should write a book with that title!

Joey says “what would happen to Emily if you and Billy die?” I was taken aback by this question because I really think of him a just a self concerning teen LOL. I told him that I hadn’t planned on passing any time soon and Billy then said he was never going to die! I told him that if Billy and I both died tomorrow I had no idea who in the world she could live with, that there was no right answer to that question. I told him that it’s my goal that by the time Emily is an adult I hope to have her independent enough to be able to live in a group home with assistance. I told him that he would always and forever have a say in her life and be able to put a stop to anyone being mean to Emily. I went on to tell him that the responsibility would fall on him to keep his sister safe and respected when Bill and I die.

I told him that if I should die tomorrow he should look at my facebook and see all of my friends on there that have children with Ds and feel free to ask them anything, that he knew Jackie and Tracy and he could ask them anything.

He seemed to walk away with a feeling of peace and I think he really just wanted to know that if I should die tomorrow he would have a say. But it really got me to thinking…..I really need to figure some things out.

Sweet dream?

2009-11-23T22:21:00.001-05:00

Last night I dreamt that I was pregnant, shocking to say the least. My dad was in the dream and he told me that the baby was a little boy with Down syndrome, he told me that the baby had nowhere else to go so they were giving the baby to me. My mom was sitting on the couch with him and he introduced us, such a strange dream……….so good to see them. BTW I’m not pregnant.

trouble in paradise?

2009-11-17T20:20:00.000-05:00

There have been some rough spots here, some hurt feelings and soul searching. It so easy to forget that your relationship is just as important as any one person in the house. Life gets in the way all too often it seems. I love Bill with a my heart and I believe he loves me but all to often we put one another at the bottom of the list.
We need to get back to date night.

Breast drama

2009-10-29T13:51:00.000-04:00

I recently went through some breast drama. I had found a lump about a year ago or so and they did an Ultrasound (US) but said it was nothing and that we would just keep an eye on it. I noticed not long ago though that the lump changed, got a bit bigger, got a bit harder so they sent me for a mammo and another US.

I’m in with the US tech and she excuses herself for a moment and comes back with the Dr. (I think my pulse became audible to the room). The Dr. takes the wand and looks at “the area of concern” and talks to the tech saying “hmmmmm see the shadowing there? Pretty cut and dry.” I say to the Dr. “what are you talking about?” he said “oh I’m sorry (like he just remembered I was there) we’ll need to get a needle biopsy done of that area” he said I’m pretty sure it’s nothing but I want to be 100% sure so we’ll do the biopsy next Thursday (a week away). Long week.

I walked into the biopsy scared out of my GD mind! I tried not to look at the equipment but unfortunately caught a glimpse of the biggest needle I had ever seen! It didn’t hurt when they were numbing me and it didn’t hurt when they took the samples but at the end the put a marker chip in there so that they can find the “area of concern” more easily on scan SOB that marker placement hurt.
I waited from Thursday at 3pm until Monday at 3pm to hear the most beautiful word……..BENIGN.

BTW over the weekend the husband, boy and I stripped the old wallpaper from the living room, mostly so I wouldn’t think of what might be. The men folk were all sorts of happy with me about this project.

I have the best husband in the world, I really do. Living with me isn’t easy, I can be quite the bitch and he loves me, tude and all. I love you Billy and I appreciate all that you do every day to keep our lives happy.

2009-10-21T15:35:00.000-04:00

Yummmmm

Progress

2009-10-20T10:32:00.001-04:00

My exercising isn’t going so well. I need to commit to it, need to really buckle down. I think I need to set some hard and fast goals. I want to get back in to yoga again but I feel like I have no time for it which really just means that I haven’t made it a priority.

So had the meeting at Em’s school and before I say anything else I would like to shout from the rooftop about the team that Emily is on O M G what a difference. This team respects Emily and treats her like a whole person rather than someone they are miserable to be around. They think a communication device would be a wonderful idea and really like the total communication approach. The behavioral therapist was very interested in working with Emily. I need this all to work, I need her to come down a bit and to listen a better.

Have some other things going on right now, can’t really write them down at this point but soon.

Runny nose

2009-10-10T22:40:00.002-04:00

It's October and true to form Emily has a runny nose. This time of year I have to look in the mirror at my shirt before I leave the house to make sure I have no snot on me (I live the glamorous life) but tonight she felt a wee bit warm.......hate that. When Em gets sick she can go from kinda sick to really sick in what seems like a blink of an eye.

I have made the decision NOT vaccinate against H1N1 and now I am really really doubting my decision.

Time keeps on tickin

2009-10-07T09:21:00.000-04:00

I keep trying to get in here and update and the days just seem to get away from me.
Last weekend Bill and I went to see Pink, it was quite honestly the most amazing show I have seen in a very, very, very long time. Her show was brazen, sweet and grand. She did song after song, costume change after costume change. I just can’t say enough about the show to do it justice. When she tours again you had better believe I will do whatever it takes to be there.

This month is National Ds month. The national news though is dominated with stories about Autism. LOVE our national org’s they are so on top of it…..NOT

Now that Joey is in HS we are really giving him a lot of autonomy with regard to his school work, I feel that at this point he has to know when things are due, how to get it done and doing what is expected. His dad wants us to always be looking in his binder for assignments etc. but that isn’t going to teach him how to govern himself. We need to remember that soon enough he’ll be off to college or whatever and he has to be responsible for his own person. We shall see what happens with report cards. I’m also trying to let him navigate his friends and all the drama of being a teen. It’s really hard to sit back and not tell him to do this or that.

Things are so much better in school with Em, she is so accepted in her new program and I am so thankful that this year isn’t a repeat of what we have had. We have a big meeting coming up next week (was supposed to be today) about communication devices and behavioral therapist. Her teacher is a dream and I feel so up about where this is going.

Bill and I are doing well, things feel so much less stressful now that his work schedule has changed, it feels like we can breathe again.

Buddy Walk time

2009-09-30T10:56:00.005-04:00

PHEW what a busy time. We had the Buddy Walk which went pretty well but attendance was down some. Those early morning setups are something I never like.

Along with the Buddy Walk Emily had her turn with the T21 Traveling Afghan which is a very very cool thing to be part of.

Of Course Barbie had to look into the box

Wrapped her baby in her Afghan

At the walk

Thank YOU CJ for the chance to be part of this fantastic project. I ask anyone who comes to this site to please go to CJ's Blog

Communication

2009-09-25T13:22:00.003-04:00

So.......Em's 7, her speech is just about zero and I have to get real about what to do about it. The truth is that she can communicate with us at home, we know what she wants and we try to make things go smoothly as to not frustrate her or ourselves. But, truth is nobody oustide of our cirlce knows what she wants and honestly, they just write her off as being stupid. Em's not stupid. She can't form the words and she would rather just not try than to be frustrated.

I am thinking of getting an assistive device for her, at this time we use PECS but it's just not portable enough and really, it doesn't have enough vocab to be effective. The devices though are SO MUCH MONEY.......The first step though is to meet with the school which will happen in October and have her evaluated for one of the many devices out there.

I hope I'm making the right choice........how the hell am I supposed to know what that is? Sometimes, ok more than some being a parent sucks.

As for Joe he's doing well in the band, finding his groove in HS and given me the right amount of crap along the way!

U2

2009-09-21T20:51:00.002-04:00

Last night I went to the U2 concert, it really was an amazing experience. My “seats” were more than amazing, they were phenomenal. The show was phenomenal, the energy the amazing camaraderie of 70,000 singing as ONE. I love them.

The crappy part of the night came when the concert was over and I heard someone saying that it was distracting when Bono talked about social issues during the show….who cares they said………why wont he just sing? Ignorant.

I don’t want to judge a person but why listen to a group that has always stood up for doing the right thing? If you can’t stomach the message of the music, don’t listen.

Emily's new skill

2009-09-15T21:33:00.002-04:00

Emily has proven that she can open child proof bottles. I know this is HUGE, it take a lot of skill to do BUT it also means that cleaners and medications are all within her reach.

The day to day stuff

2009-09-09T11:49:00.005-04:00

This morning Emily used her PECS schedule so well, and things went so smoothly that we had some extra time and I took some pics.

Then I get a call from Joe telling me he forgot his trombone and asking if I would bring it to him. I debated for a moment about allowing him to get into trouble for it but in the end I brought it to him I just ♥ tooo darn much.

The times they are a changin..........

Going to the fair

2009-09-06T13:26:00.002-04:00

Went to the fair yesterday and Emily had a good time, she really loves the animals at the fair AND daddy took her on a smipping ride that she totally adored (too bad here mommy and daddy hate rides) she would have loved to go on rides all day long.

I wish I would have had my camera on me.

Last night after we got home and she was playing she had an accident and went running with no clothes BUT she did have her princess magic wand in hand LOL I was laughing so hard I thought I might have my own accident.

Mimi Kirchner dolls

2009-09-04T11:33:00.003-04:00

These dolls are sooooooooooooo beautiful. Emily LOVES LOVES dolls I would LOVE one of these for Emily.

Her ETSY shop

Today is swing day

2009-09-03T14:25:00.005-04:00

In addition to having Down syndrome Emily has sensory processing disorder. In Emily’s case she needs a lot of vestibular input. Emily would spin and spin and not get dizzy like the rest of us. Every week I take her to an OT center where they work with her swinging and spinning her. She has shown amazing growth through this process and I kick myself for not doing this sooner. At the center they have her do different activities that require her attention and concentration, she does the tasks beautifully. Her reward….the helicopter swing :)

We are also doing therapeutic listeningwith her.

When I bring her home after her OT visit she is so at peace and calm.

The first day of a fresh new school year

2009-09-01T13:43:00.005-04:00

Today Joey headed off to HS, he headed out with confidence and happieness. I hope the happiness continues through the year.

I hope this year brings great changes for Emily. At her old school she wasn't valued and it showed, I hope at this school they can treat her as an equal and value her as a person.

Tomorrow is the

2009-08-31T22:52:00.001-04:00

start of a new school year. I think I'm sitting here even more nervous and excited than either of the kids.............

Get organized!

2009-08-27T14:17:00.001-04:00

There’s something about the end of August that makes me want to organize everything in the house. I can’t stand the clutter, sometimes I feel like I am drowning in it! I just want to toss everything and have clean, clear spaces! The boy and husband always have a look of fear in their eye when I get like this……..something a little evil and satisfying about seeing them that way.

Page Title

2009-08-26T17:58:00.000-04:00

A totally awesome resource NH Family Voices