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Tuesday, December 22, 2009
Tuesday, December 15, 2009
So I ordered some items for Megan to use at home to help her with her homework.
Megan's biggest issue is with strength and grasp (Fine Motor Skills).
She tires quickly and wants to give up after just writing her first name.
We found that if her feet are on the ground and her work is raised off of the flat desk then she can work for longer periods of time.
So now we have a slanted work board.

It is clear so that you can put papers underneath so she can work on tracing.

Here is head phones so she can hear back everything she speaks. This helps with her speech issues....She said "Pennsylvania" yesterday very clearly just by hearing herself in these headphones/microphones.


The last items are: 1. wrist band to help her hold her pencil in place 2. 3 tiny u shaped pencils to help strengthen her grasp 3. Blacked strips with blocks to help her focus on reading words in her books. So far all of these products have been useful. We are hoping with reinforcing at home that she will become more confident in her work at school.



p.s. If you are wondering, we purchased these items on Therapy Shoppe.
Saturday, December 12, 2009
On Shutterfly are buy 1 get 1 50% off right now. They make GREAT gifts and they are fun to make. I just finished one myself. It is really cool and I cannot wait to get it.

Also use the code SHIP50 and get FREE Shipping on orders over $50.

Here is 2 pages out of my book.
Thursday, December 10, 2009
Dr. Randal Betz.

He is an exceptional doctor but a more extraordinary person.

I know Dr. Betz personally because he and my father are best friends. He takes really good care of my dad and makes him feel like a part of his family. They are very close. My dad has his own room at his home which he uses often.

When my daughter Megan was born 6 years ago with Down Syndrome I would never have thought that Dr. Betz would provide so much in way of exceptional care for myself and my friends. After Megan was born I joined the online community, Downsyn.com, where I also became a moderator.
I spent the first few years of Megan's life connecting with these other families on the site and becoming close with them, talked on the phone everyday and met them at the annual NDSC Conferences. We are now connected forever even if we have moved on and do not talk as regularly we would do anything for each other.

My friend Renee, she has a 5 year old daughter Kennedy and when she got neck x-rays (which is a routine check-up for our kids because they have a higher chance of having AAI) the first person I thought of was my father's best friend, Uncle Randy.
So without thought I had my dad give him a ring and he and I continued to swap emails until eventually he took over Kennedy's care. Kennedy went on to have spinal fusion surgery at Shriners in Philadelphia and today is doing amazingly well.

With Renee and Kennedy's success I have had so many people contact me to get in touch with Dr. Betz. And every time, I send on the email, and every time he reviews the case and helps in any way he can. He is my hero because he isn't looking to get anything out of it, he just wants to help. He again is an exceptional doctor but more importantly he is an extraordinary human being and I wish more doctor's were just like him. So thank you so much Dr. Betz for never saying I can't! I am sure you are a hero to more than just me!
Wednesday, December 9, 2009
Mom: "Hey Joey I want you to read my blog"

Mom: read my blog out loud to Joey.

Mom: "Joey do you know what segregation is?"

Joey: "Ummm, not sure."

Mom: "Did you know when Nana was little that blacks and whites couldn't go to school together?"

Joey: "seriously"..."that wasn't that long ago"..."Man I can't imagine that, Nigel is like my best friend, I can't imagine not being able to go to school together"

Mom: "So maybe when you are talking to your son 20 years from now, he will answer the same way about his friend with a disability....now wouldn't that be cool?"

Joey: "Now that would be awesome"
LDA? Anyone know what this stands for?

LDA= Least Dangerous Assumption
Anyone know what that means and how it is connected to inclusion?

In 1984, Anne Donnellan, a respected researcher in special education, wrote that “the criterion of least dangerous assumption holds that in the absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to function independently as adults.” From Disability Solutions Volume 6 Issue 3 Fall 2005

Case in point. I watched a film during our conference where a mother fought to get her disabled daughter included. Her daughter grew up in the 70's when it was much harder to get a child mainstreamed. The mother fought an up hill battle. She had a daughter who had limited use of her hands and was non verbal with violent behaviors. All the doctor's said she was mentally retarded and not to waste anytime trying to teach her, it would be lost. So this child went through life not being taught any general education curriculum. When this child grew into an adult she was completely dependent on her mother but with strides in Assitive Technology they were able to introduce a computer system that she could type through. What they found out through this new technology was that this child now an adult was trying to scream out to everybody without her voice that she was capable. She understood EVERYTHING everybody was saying but was incapable of speaking or writing the words. All her violent behaviors were her trying to get people's attention. Can you imagine how you would feel if this were you or your child? So now as an adult she still requires the use of a nurse and cannot care for herself. This story is a DANGEROUS ASSUMPTION....So now go re-read the definition of LDA. Make sense now?
What do we lose if we assume that EVERY CHILD is competent? Say we send a child who has the label of MR through the general education classroom and she grows up and she still cannot understand, what have we truly lost? The alternative is the case in point above. Do you want that to be your child?
"I see inclusion as the last frontier of desegregation....if you read the brief from Brown v. The Board of Education...the board of Education argued that if we let blacks be integrated that the next thing you know is that we will be letting people with disabilities be integrated"
From the Documentary Including Samuel
Joe Petner
Principal, Haggerty School


All children no matter their gender, race, nationality, religion or disability should all be afforded the same educational opportunities surrounded by their peers.


Some people fear that their child's behavioral problems are to extreme to include them in general education. Some people fear their child's medical needs are too great to have them in the general education classroom. Some people feel that since there child can't write or speak or are mentally retarded that they somehow should not be included in a regular education classroom. As a parent to 1 child with special needs whom is mentally retarded and 2 typical children I say please include your children. Challenge your system to make it work. It can be done appropriately. Not only will your kids with special needs benefit but my typical children will too.
I imagine a world where your child in a wheelchair who cannot speak is the best man at my son's wedding.
I imagine a world where your child who requires deep pressure to get his behaviors under control is settled by the touch of my daughter.
I imagine a world where all our children no matter their gender, race, nationality, religion or disability walk side by side in a world that doesn't see labels.
Am I delusional to think this is possible?
I FEARED the disabled growing up, I do not anymore.
I do not want that for my children.

Can you imagine being that parent who just wants there child included and to get it the mother must say "Just let her burn"....well then, as a mother....I will join this other mother and say it too...."Just let her burn" because all our children deserve a chance at a more accepting life and it starts with a sense of belonging.
I wanted to talk about a conference I went to back in October.
The guest speakers were husband and wife (The Theoharis's) and also professors at Syracuse University. Here is Julie's website for those interested in learning more.

When I first decided I wanted Megan included my husband and I talked about where we thought Megan needed to "be" to do it. We set 1 goal...that she needed to be fully potty trained or otherwise she would stand out in the classroom as different.
What I didn't realize was that it was ok that she was different. Her speech and her physical ability would make her stand out and that was ok. That was why we wanted her included, to make her "difference" one's others could accept.

Julie Causton-Theoharis started the conference by talking about a mom and her disabled daughter. Julie was assigned to this family as a 1 on 1 and was told she would be doomed as a para-professional because this mother was CRAZY (or so that is what the other teachers and school administration had said). Her daughter could not walk and barely spoke, she was in a wheelchair and she wanted her daughter to go to her home school. NOW THAT IS CRAZY ISN'T IT???? Julie spent a lot of time with this family. The mother started out by telling her their story. They moved into town and her daughter was assigned to go to a special school where they were prepared to deal with her extensive needs. Her mother would have to wake up extra early and put her daughter on a bus that goes 1 hour away. But her mother didn't want that. She wanted her daughter to go to the same school as the kids next door. The school was not even a mile from her home. Shouldn't her daughter get to go to that school? It saves her daughter 2 hours of riding on a bus a day...10 hours a week. So the mother wheeled her daughter right into the home school and signed her up. The school looked at her and her daughter and nicely said, "oh, your daughter needs to go to the wheel chair school, not here, we are not equipped to help her here."
So the mother was shooed away and told to send her to the other school.
The mom still did not want to go to that other school so she marched right into the school the next day and wheeled her daughter into the 1st grade classroom where she belonged. She walked out and went home. She received a phone call right away telling her to come pick up her daughter that the teacher was not equipped to handle her and didn't know what to do with her. The mother responded,"just teach her like you would teach the other kids" and hung up the phone. The phone rang again and it was the school administration telling the mother to come pick up the child. That the building had fire safety rules and that they would not be able to get her daughter out of the school in time and she would most likely die in a fire.
The mother instead researched and found that not only were there no fires ever in that school, but there were no real fires in any of the schools in that state in the past 50 years. So the mother went right into that school and said, "I give you my permission that if there is a fire in the school then you can let my daughter burn."

THINK ABOUT THIS AND I WILL BE BACK TO BLOG LATER.
Tuesday, December 8, 2009
So many people ask me, why inclusion? Why send Megan into an environment that is set up for her to fail? So many teachers have gotten used to finding the kids with the "disability" and sending them to the appropriate classroom for the right support....you sent Megan into a place that has no idea how to handle her....Well, I say....

I do it because I want what is best for MEGAN. Community and socialism is more important to me than academics. I can help and supplement at home....I cannot supplement the socialism and community she needs to build for herself.

I am going to be brutally honest here. Growing up I was SCARED of the people with special needs, they did not go to school with me and when I saw them out in the neighborhood I STAYED AWAY from them. All the kids in the neighborhood were mean to them. I remember this boy with Down Syndrome vividly, his name was Chris and people nicknamed him Purple Duck (not sure why). Chris liked one of the girls in the neighborhood and wanted to kiss her (I was in 5th or 6th grade and had no idea how old Chris was). Behind his back, this "girl" made fun of him. She told him to eat dog #$%^ and she would kiss him. It was so sad and gross and I just was not a strong enough person to get involved and I am ashamed of who I was, even being present for something like that.

My fear surfaced again when Megan was born. I was scared of her and scared I couldn't love her. Boy was I wrong. I did a lot of soul-searching and recounted my old memories the first couple of weeks after her birth. I realized people were mean to Chris because they did not know him, he was sent to a "special" school and so nobody was used to his speech and behaviors. He was not the norm. It was now my job as a parent to make it the norm. To expose Megan to all the kids who she would grow up around and be expected to work with in the future. So inclusion works for us. Megan is known in the community and treated with respect, she is not feared and she is part of the norm. So when we went to the mall on Friday and we ran in to kids from her school they did not stare and point, they did not gossip about her or make fun of her...they all walked right up to her and gave her a hug and asked her how she was doing....and so, this is why inclusion is important to me. I don't want anyone to fear Megan.
I would say...

Megan will most likely grow up...

And be on stage.

It is where she shines!
Thursday, December 3, 2009
Yesterday I went in to Megan's school to help her "shop" for presents for her brother, sister and dad. She did all the picking out herself. It was so cute to see her like something and pop it into her bag. I was very proud of her. Once we were done shopping she sat with her friends going over their purchases while I helped some other kids in her class.
She bought her sister an Angel Necklace in this cute velvet pink heart box, she picked out basketball book marks for Joey's books he is reading and she bought her daddy a ______ (sorry, daddy always reads the blog).
We had such a nice time and she gave me my hug and went back to class. She is finally getting used to seeing me at school and then going back to class w/o getting upset.

Had to share. Before the Thanksgiving holiday there were presents coming home in Megan's bookbag for her birthday. There were stuffed animals, necklace, movies and a cute note which reads like this:
Megan, Happy Birthday! You are so cool. I hope you like the stuffed animal dog. Love, Kara

OK, I had tears in my eyes reading that. How sweet! Looks like Megan is doing very well in the social department. When I spoke to one of the teachers at her school she told me Megan's new nickname was Megan the Movie Star since everyone knows her and says hello to her. I don't think I could ask for anything more!
Monday, November 30, 2009
Here is our 2009 X-mas card. Wasn't sure if I would be able to get this out this year. I did not last year...sorry! But they were ordered tonight so here is a spoiler for all of those who actually check my blog.

So I thought I would pull out the old baby book that documented her growth over the years and see how far she has come!

11/08/2003 Birth- 7lbs. 3oz 18 3/4 in.
11/17/2003 11 days old- 6lbs. 6 oz. 18 3/4 in.
11/24/2003 2 weeks old- 6lbs. 7oz. 18 3/4 in.
12/12/2003 1 month- 7 lbs. 13 oz 20 in.
01/13/2004 2 months- 10 lbs. 0 oz. 21 in.
03/17/2004 4 months- 12 lbs. 4 oz. 23 in. (height 12% weight 25% Head Cir 20 %)
05/17/2004 6 months- 14 lbs. 9 oz. 25 in.
08/19/2004 9 months- 17 lbs. 8 oz. 26 1/2 in.
11/29/2004 1 year- 19 lbs. 3 oz. 27 1/2 in.
02/10/2005 15 months- 20 lbs. 3 oz. 28 1/2 in.
05/04/2005 18 months- 20 lbs. 12 oz. 29 in.
11/09/2005 2 years- 23 lbs. 14 oz. 30 1/2 in.

And now at 6 she weighs in at 42lbs and 41 inches tall.
My how she has grown!
Friday, November 20, 2009
FINALLY got my domain name back after a year hiatus! I was paying an arm and a leg through Yahoo but once they released the name I bought it through google! So now you can go just type in Megansgot47.com to get here! I hope to get back into blogging soon. Been really busy with no time to update. Not much going on here either and having a hard time coming up with things to talk about.
Sunday, November 8, 2009

I cannot believe you are 6. It seems like such a big number for such a little girl.
You started Kindergarten this year and your 3rd year of dance.
You amaze me everyday and your spunk will get you through life with flying colors.
Everyone you meet, everyone whom you talk to, loves you forever.
You are contagious...in a good way.
You are so special that you had no issues what so ever letting everyone help you open your presents, who does that? All kids I see are very territorial but you...you smiled and invited all to join in the fun. I wish everyone had a soul like yours, the world would be a better place.
Happy Birthday my beautiful girl....you make my life enormously better!
Saturday, November 7, 2009
Thought I would share our Halloween pictures with you. Megan was sick in the pictures and we had a low key Halloween but at least we were all together. We put the camera on the tripod and got a family shot which is rare. Enjoy!



Tuesday, November 3, 2009
Is it contagious or what? LOL

I really tried NOT to look at Recee's Rainbow (I know that sounds terrible).
For me it was easier to ignore it cause when I paid attention I cried.
The more my friends started adopting the more I questioned in my head "why"...."how can they afford this"..."isn't it too stressful on their families"...so I started looking at the site wondering....reading blogs, looking at pictures.
I stared at faces wondering how each of my friends happened upon their chosen one. What drew them to a particular child? Did they decide on a child or a country, did they look domestically first? This all just seems like so much work.

I can not explain for me what changed in my head or what makes me go back to the same picture everyday wondering what this orphaned child is doing. If she is loved, kissed, played with, fed good food...if she is warm at night, if she longs for a family or if she is happy and content where she is (not knowing the looming fate that is ahead if she doesn't get adopted). So for now, we have pictures in all our rooms, we are praying hard, we are soul searching and working on things at home that need to be taken care of, I am working EXTRA hard on making my husband get to the same place I am....so for now we are just going to start raising money and getting people to pay attention. We can do that! I am hoping in the mean time God speaks to us and tells us his plan (cause sometimes I truly think that is what my husband is waiting for).
I know my thoughts are all over the place but I really wanted to get them out there, I wanted others to know it is on our hearts and minds too all of the time.
This will probably be shocking to some considering I haven't really said all this out loud to anyone yet, not even family.

Olivia asks me everyday, "Are we going on the airplane today to get my sister"....I know she already loves her! We have talked a lot about all the children who need a home and I know she would bring them all home if she could!
Friday, October 23, 2009
Thought I would post an update about school.
Megan is overall doing quite well in school. We had some days where the teacher didn't know how to respond to Megan's stubbornness but it seems as though we are getting less and less emails about Megan crossing her arms and refusing to follow. So that is good, she has either stopped or the teacher realized in the grand scheme it wasn't such a big deal.
Megan is doing great with writing. She still hates anything to do with crayons and writing but can really write her name well on her papers. The "M" "e" "g" are always visible.
Megan is doing GREAT with anything in math. She is so good with counting and patterns.
The "kid writing" is proving difficult but that has been modified a little bit to her level...although I still think Meg would benefit from sequencing or site words during this time frame.
The school and staff have just been so great in wanting this to be a successful year for Megan. I just need to stay on top of things and make my voice heard when I see things. Sometimes I don't speak up when I should and I am working on it. I need to advocate for my child all the time and so I am working on it....which reminds me, I need to go make a phone call.
I will try to update more.

HAPPY DOWN SYNDROME AWARENESS MONTH TO ALL MY FRIENDS, WE LOVE YOU!!!!!
Thursday, September 24, 2009
Megan is FINALLY writing her name or approximating which is a good start!!!!!

She did this in school today and I am not even sure if the teachers noticed!

Here is Megan's homework that we worked on...you can see she even tried writing her name here too. She is soooo smart, but soooo stubborn! I love her to pieces and am SO STINKIN' PROUD!
Sunday, August 30, 2009
Since Olivia is 4 now, it will change to the "Literal Mind of a 4 year old"

Olivia got new high heel sandals and LOVES to wear them wherever we go!
We went to Burger King the other night and played inside for a little bit because of rain.
Once it cleared up we decided to move to the outside playground and needed to get our shoes back on.
Joe sat Olivia down to help her with her shoes and said "Its gonna be hard to play with these shoes"....Olivia responded "Don't worry daddy, I am not going to play with them, I am going to wear them!"
Monday, August 24, 2009
After going over the day with the teacher, I decided I wanted to change to my 1st choice for Megan's day. Here in our district Kindy is only 1/2 day's so we were pushing to get her in both AM and PM.

So I decided since we only have the 1 on 1 1/2 day I would rather it be in the AM. So Meg will go in the AM fully included w/ a 1 on 1 with no pull outs. She will then stay for lunch to practice for 1st grade and then receive her Speech, OT and PT after lunch M-F. That way she goes from 9 to 1 and her day isn't as long and I still get my afternoons with her. That way she can still do dance class with Olivia too.

I was concerned mostly with safety. Meg would have been out on the playground with nobody watching just her and I worry that she may wonder or fall and get hurt trying to do what the other kids are doing and the last thing we want is daily runs to the nurse.

I know I could have fought for the 1 on 1 for the full day but I truly like the idea of just an extended 1/2 day for her. I don't want her getting tired and cranky and making the PM kids think she is always crabby. She will be on her "A" game in the AM since that is when she is happiest.

This was my ideal day for her and now we have it all squared away.

p.s. Meg was also approved for the Van, so she will get a car seat to go to school. We will do the bus next year when she is a little older and heavier.
Monday, August 10, 2009
Megan will be going to Full day Kindy in September. It is pretty much how I explained in my last post but opposite. Where the 1 on 1 will be there for PM....she will take her to lunch and recess and then into the PM.....She will have all her services in the AM.

I am so excited and so appreciative to her school for how much they are doing to make this all a success. We are going in Thursday to spend some time with her new teacher.
Wednesday, August 5, 2009
Our new team has put my fears of Kindergarten to rest. I was nervous that somehow she wasn't wanted there and she was going to be a burden and I would have to fight for what I wanted but that is not the case. The principal, the special ed supervisor and our case worker have made our experience so far exceptional. They have been so positive about Megan being in the right place and it has made me relax. I can now enjoy my girl growing up and moving on knowing we made the right choice.

I mentioned today in the meeting that a friend "Marlene, Aleena's mom" (I know this is not the case now) was doing AM and PM. So I mentioned that Megan would not do any pull-outs during one of the sessions and she could experience the class like the other children and then in the PM she could receive her therapies...and they all loved the idea. They are now going to work on logistics and see how they can extend the one on one for a few more hours.

So this is exactly how the day would work. Megan would take the van to school and be met by the 1 on 1. The 1 on 1 would walk her to the class room and get her settled. Meg would do the entire AM with her class w/ the 1 on 1 present. The 1 on 1 would take her to lunch at dismissal and then to another short recess w/ 1st grade and then she would do PM and have her therapists in and out of the room.
This would give Megan the chance to finish her work she started in AM which may take her longer and also have a double presentation to help her retain it better.
I hope this all works out and gets put in place soon so we can prepare.

Very excited about this!
Thursday, July 30, 2009
Video to follow.

After almost 3 years in this pre-school, Megan graduated today and is now officially a kindergartner. I have many mixed emotions. Sad she is leaving behind a great team, sad she is growing up but happy for her success! She made me so proud today as she participated in the ceremony. She was absolutely beautiful!


Here she is getting her diploma and with her teacher Ms. Barb

Thursday, July 9, 2009
Every summer I get a picture of the kids on the beach together but I am having a hard time gathering the pictures through the years. Here is the 1st pic I took back in
2004


2005


2006


2007


2008
(I know I have a matching bathing suit one somewhere)


2009


Maybe in a few years I can actually get all 3 of them to cooperate at the same time!
Monday, June 15, 2009
We have reached 100 words so far in reading. I am so shocked with how much the girls retain. All I have done is make it fun and they WANT to do it! They love showing people they can do it too.

Here are a few photos of our board.
Food


Animals


I print out pictures, laminate and apply the velcro. Every week we change the group (household, animals, food, travel, beach etc.)


I am also making them their own books with the words they learned. They love being able to read. I get them bound at Office Max.


Monday, June 8, 2009
Thursday, June 4, 2009
Friday, May 29, 2009
Here are some pics from Olivia's 1st Day of Pre-school and Last Day (yesterday).
She has grown so much this year.

Pop Pop and Olivia on the 1st day, she was so nervous!



Olivia and Pop Pop on the last day of pre-school


Olivia during their procession



Olivia jumping for joy! as they sang their songs


Olivia with her teachers that she will miss so dearly!


Thanks Woodside for an incredible year!
I was very overwhelmed last night. Dress rehearsal is a chance to get in your videotaping and pictures because you cannot do that at the actual recital.
Well 1st, the girls were at opposite ends of the stage so I could not get them both in the actual videotaping. My zoom was broken off the video camera and so I could not zoom in or out and it was slightly out of focus. So of course instead of enjoying my talented beautiful children I got stressed, flustered and upset. They truly were amazing.
My sister used my new camera to get some pictures but couldn't figure out the settings and so most pictures are blurry. BUT I'M OK today just a little upset still. I will share what I have and start trying to find others who got some better pictures. I am pretty sure my friend Paula got some good shots of my girls.

Here is before when we were waiting in line for pictures


The girls with their best friend Sophia

The girls after the certain opened




Worst of all you never call baby when you say you will
Can you tell Megan is on the phone, totally in character ;)

Olivia was checking her dance teacher and followed her lead to remember this part of the dance

Megan adding in a wave to us as she was taping....she is good at making us feel loved!


I will add the video I took soon. I am going to try and get my friend Paula's video too since her daughter was right next to Megan.