Friday, October 30, 2009
After school today we went straight to Riley's first evaluation meeting with the school district. I have to say it went much better than planned and we'll have his IEP meeting in a couple of weeks. Its hard to believe he only has six more visits to the Guild school before he graduates. Sad and exciting changes all at the same time.
Posted by Mary at 8:01 PM
Wednesday, October 28, 2009
The test results are in and my child that has Down syndrome is delayed enough to attend the Preschool in our public school system. It boggles my mind that we have to have him evaluated to see if he qualifies. Trust me he has Down syndrome.....it hasn't gone away or anything.
Riley will be graduating from the Guild School at the end of November when he turns three. Sadly it is only a birth to three so now he is transitioning to the public school system.
Riley rocked his evaluations. He has made so much progress that shows up on these standard evaluation and so much more that they can never start to measure with a test.
Physical Therapy: Age Equiv
Stationary ( tall kneeling, standing on tiptoes) 18 months
Locomotion (walking, running) 17 months
Object Manipulation (kicking, throwing) 20 months
This all comes out to be 2.13 standard deviations below the mean and you only need a -2.0 to qualify for PT in the public school.
Occupationa Therapy: Age Equiv
Grasping 15 months
Visual - Motor Integration 23 months
This all comes out to be 1.4 standard deviations below the mean. We are hoping that though you are supposed to be 1.5 below the mean to qualify for OT in the pubic school that Riley will still be able to recieve services. He really doesn't have classroom skills and that is supposed to be the focus so I'm keeping my fingers crossed.
Riley scored at a 21 month level for both receptive and expressive lanuage skills. This surprisingly low, but apparently he was a complete stinker when they were working on a portion of the test that he would normally do great at. He had no interest in talking about the picture cards that we all know he signs and uses some words for.
Cognitive skills rated at the 24 month level and Social Emotional at thre 30 month level.
Posted by Mary at 9:35 PM
Sunday, October 25, 2009
The 31 for 21 Challenge wouldn't be complete without at least one list of 21. A year ago I wrote a list of 21 Things about Riley......so many of those fun things are still true he's just more advanced at them. You can find the orginal post HERE. Hope you enjoy!
1. Riley is using moving at high speed. He rarely slows down but you know he really wants to "run" when he throws his shoulders back and his arms pump.
2. Riley idolizes his big brother. When Rex is gone he misses him and yells for BUBBA when Rex come through the front door.
3. Idolizing Rex has helped Riley learn to do many things. He wants to sit on his trike when Rex rides his bide, he try to copy Rex jumping. Who would have thought that being a copy cat would serve him so weel.
4. Riley is starting to really love puzzels. He has a colored peg stacking toy that he puts the pieces on the matching colored shapes on the colored pegs. DON"T try to put them on the wrong colored peg......Riley will tell you about it.
5. Riley smiles the majority of the time but he sure lets you know when he doesn't like what you are doing. He'll break your heart with the silent cry or covering up his face to show you that he doesn't want to see you.
6. Riley is able to kick a soccer ball and I'm considering putting him in soccer tots. Wouldn't that be the cutest thing ever!
7. Riley will count to 3 with help. He is good at repeating but often we get two and three all by himself.
8. Riley' melts your heart with his big brown eyes and then keeps it with his laugh.
9. Riley turns 3 on November 30th but is the size of a typical 12-18th month old. The majority of clothes are 18 month... cost effective but SO boring to shop for.
10. Riley loves music. He has several songs that he signs with but Twinkle Twinkle is a favority and he sings along.
11. Riley's only interest in TV are Signing Times videos. He has a huge signing vocabulary. I bet he is around 100 signs. Now if only I new that many.
12. Riley loves people. He is one of the most amazingly social kiddos I've ever been around.
13. I think Riley will have a career in music or some type of performance. He loves all music and is often found "shakin his bootie"
14. Riley loves food. In his toddler class he now sits next to the little boy with food aversions. He is the peer model for good eating skills. Ya, my kid is the class pig.
15. Riley is learning to jump. He screams for MOOOM to watch and then yells UMP UMP while stomping one leg. He can't quite get both legs up but he knows they should come off the ground. It is hysterical. Won't be long before he is a jumping fool.
16. Riley loves books. Especially the touch and feel books.
17. Riley is going to be a Tiger for Halloween this year. Last year he was a duck. He couldn't walk yet so his super cute costume was wasted in the stroller. Watch out folks he walks this year and I think he's going to love trick er treaing.
18. When Riley gets scolded or told no if he doesn't hide his face and try to make you go away he attempts to make you laugh. He uses all the tricks and squishy faces he can muster to try to make you laugh so you'll forget why you were telling him no.
19. When we go to my mom and dads Riley walks in the house and starts yelling for PA. He's still a bit casious of my dad but he loves his Gramma and PA.
20. One of his favorite things he does at PA's house is visiting the chickens. He often stands at the fence and "talks" to the rooster. DOODLE DOO DOODLE DOO
21. Riley is an amazing lil guy that is going to change people's perception of Down syndrome. He will make them acknowledge him and tell him how cute he is even if they don't want too. He is knows to say hi to every one we see and if they don't talk back to him he just keeps talking and getting louder and louder until they have to acknowledge him. Hysterical!!!
Posted by Mary at 3:34 PM
Saturday, October 24, 2009
Success is not the result of spontaneous combustion. You must set yourself on fire. -- Reggie Leach
How do you define success? Is it a good job, or no job? No kids or lots of kids? Tonight for me success is watching my husband play Operation with the boys and giggling like he is 7 too. Riley's joining in and making the man's nose light up just for shear joy.
It seems that my idea of success changes from day to day and sometimes hour to hour. So I guess step one for me is defining success. Wow that is more difficut than in sounds. Well, I guess its not the defining it, but figuring out how far you can push the limits of comfort. I know with change come uncomfortable feelings, but how do you really know when you are following your heart and when you are just crazy and unrealistic.
My calculater and my heart are just not seeing eye to eye these days. I don't think Justin believes me when I told him today I was done with him and I was going to marry for money the second time????? Is it really to late to trade for a sugar daddy?
Posted by Mary at 7:48 PM
Friday, October 23, 2009
Changes are coming for our family. I can feel it in my heart and I am going to make them happen. Sorry, I can't share details but there will be changes. Changes that will make me SOOOOOOOOOO much happier and allow me to be a better mom, wife and person.
I've been thinking about the length of this 31 for 21 challenge and how difficult it seems each day to find something meaningful to share. As I was whining about it this evening it really made me stop and think about Riley. He has Down syndrome every single day of every single month, not just the 31 days in October. Riley doesn't complain, in fact he greats me every morning with a smile and a hug ( I'll forgive him for asking for Dad every morning) There are few complaints when I haul him off to PT, OT or Speech therapies and really who doesn't complain a bit when they are asked to do a difficult work out for 2 hours twice a week. I for one whine over the 1/2 hour I've been trying to fit into my day. So, I'll stop my complaining and finish the challenge and hopefully allow one more person to see in to the life of a child with Down syndrome and there fore make each day just a little easier for Riley as he grows.
Posted by Mary at 11:05 PM
Wednesday, October 21, 2009
I entered a fun contest over at Elasta Mom's and I'm a Winner go check me out!! While you are there check out Elasta Mom's fun blog. I promise you won't be disapointed.
Riley is still sick but improving. The fever is down and he is eating and it has all stayed in place so I think we are on the mend. Since I'm still a bit short on time for this evening I'd like to send you to a great new blog I've found a few months back. This is a beautiful family with two gorgeous boys. They remind me a lot of Rex and Riley. Stop by Living in the Moment and say hi to Heidi. You won't regret it. She has recently posted a video of her family that was produced by the church they attend. It is beautiful story about finding out their 2nd son, Joel, would have Ds. For those of you who know meal well you will see that its not sugar coated.....its their true reacation and how they have travel the journey since. I love it!!!
Posted by Mary at 8:19 PM
Tuesday, October 20, 2009
Well this week hasn't exactly gone as planned. Riley has been sick and his pediatrician says its the swine flu. There have been so many cases around our area and he is one sick lil man. His test came back negative but apparently it doesn't catch it all. Reguardless of what you call this bug it is icky.
So while we debated a little about whether we would get the kids vacinated it appears that it won't really be an option since it hit our house before the vacinations arrived at the Health District. Riley could use some prayers for a speedy recovery.
Posted by Mary at 8:46 PM
Monday, October 19, 2009
The world is your mirror and your mind is a magnet. What you perceive is in this world is largely a reflection of your own attitudes and beliefs. Life will give you what you attract with your thoughts. Think, act and talk negatively and your world will be negative. Think and act and talk with enthusiasm and you will attract positive results. -- Michael LeBeuf
Wow don't know how this quote ended up in my email box today but it couldn't be a more perfect explanation. This last year has been a struggle for me. My close friends, family and regular blog readers know that it has been a struggle to gain control over depression, hormones and my life in general. I have been trying really hard to make my life what I want it to be and think about what it can be. I'm tired of being tired and negative but it is such an easy cycle to get into. It is hard to explain to people who have never dealt with depression, but for those of you how have walked in these shoes you know how easy it is to blame others for the things in your life. Back in January I set a goal to make my self more healthy both physically and mentally and I've made some progress in these areas. Not near enough but progress. Read original post I think one of the biggest things I have learned as I have worked toward being healthy is that I'm 100% responsible for my own happiness. I make the choices that impact my happiness every single day. I choose how engaged I am in my marriage, how strict I am with diet and exercise and I choose how I spend my time and who I surround myself with. So here's to more enthusiasm and positive results
Posted by Mary at 6:04 PM
Sunday, October 18, 2009
Elasta Mom is having a giveaway from her sweet sponsor Uprinting.com. Go check her out.....you'll love her blog and want to come back everyday plus tell her I sent you and maybe I'll win.
This last week I attended a playgroup with a handful of moms that all have children with Down syndrome. We all have drasticaly different stories, personality, faith and kiddos. We were all chit chatting and sharing our stories and stories of our kiddos and one of the mom's busts out with "I wasn't disappointed that my babby has Down syndrome.... were you?" Well I immediately get deffensive and I'm not even sure why. I guess the adjective disapoinsted is one I never want to use when I speak of either of my kids. I've used a million other adjectives to describe how I felt but I guess scared and angry have topped the list. I'm not really sure why those adjectives seem any better to me, but I've been thinking a lot about this conversation, my reaction and the word disapointed.
http://www.dictionary.com/ defines the word disappointed as- To fail to satisfy the hope, desire, or expectation of.
So I guess the anwser really is Yes, I was totally and completely disappointed when I learned that my unborn son would have Down syndrome. I had a picture in my mind of a sibling for Rex that he would be friends, playmates and confidants with as he grew older. A family that he would have long after Justin and I were gone from this world. Rex was 4 when I pregnant with Riley and I pictured another little boy running, wrestling and playing catch with his dad.
I can honestly say that before Riley I new no children with Down syndrome and had very very limited experience with anyone that had disabilities. So, when i was told that Riley would have down syndrome I didn't know what to expect and with the unknown comes fear. Throw in some additional ultrasounds and a Dr with zero bed side manner or good sense and I had some huge fears of health issues way more scarey than Down syndrome. All I could think of was that while we thought Rex would be gaining a sibling really he gained a life long responsibilty.
Fast forward to Riley's birth and all of the scarey health issues were erased and we had this beautiful baby and it was so much easier to picture all of the things that Riley would be able to do. He would be able to run and play and giggle with Rex. (little did I realize just how much wrestling there would be) In that instant when he arrived into the world Riley erased my dissapointment. I do still have a healthy dose of fear but it is a different type of fear.
I have fears for both of my boys. I worry about how the world will see them, and if they will be accepted for who they are. I'm pretty sure that every mom worries about her boys. I worry that they won't listen to the lessons that we try to teach them... will they be respectful, will they behave at school, will they remember to put on clean underwear and socks if I don't tell them every single day, will they love to read or just love kicking the soccer ball......see the list goes on and on. Wow the being a mom stuff is hard work.
Posted by Mary at 1:35 PM
Saturday, October 17, 2009
God Chooses A Mom for A Disabled Child
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
Posted by Mary at 7:45 PM
Friday, October 16, 2009
I entered a picture of Riley with his girl Ella in a Halloween photo contest over at
Go check them out. There are some super cute babes but I course mine's the cutest. The top 5 photo entries will be selected and then voted on. I'll be sure to let you know when the voting starts... well only if Riley's in the top 5.
Posted by Mary at 7:43 PM
Thursday, October 15, 2009
Today I will light a candle in honor of my friend Jamie and all of the other moms who have lost a baby. While I can not comprehend your pain I am inspired by your strength.
The International Wave of Light sees participants participating from around the world starting at 1900 hours on October 15 in all time zones.
Participants begin lighting their candles at 1900 hours and burn their candle for a period of at least one hour. The Result is a continuous chain of light spanning the globe for a 24 hour period in honor and remembrance of the children who pass away during pregnancy and shortly after birth.
Candles can be lighted individually or in groups, in your home or in a community setting. Wherever you are, you will be joining an international wave of light in memory of all the children who have passed away during pregnancy and shortly after birth
Posted by Mary at 6:08 PM
Wednesday, October 14, 2009
I'm kind of surprised by the bloggy love, but totally excited in a teenage girl kinda way. I've been a moody blogger lately and not so sure that anyone was reallly reading. So, getting an award is fun and has lifted my bloggy mood.
Before you put the links below when you pass this award, you must remove the participant number 1 from the list. So that all participants up 1 level. Who was number 2 become number 1, number 3 was 2, and so on. Then insert you own links at the bottom (10).
6. Hootn’ Anni
Posted by Mary at 9:16 PM
Monday, October 12, 2009
Remember how your mom always told you "if you don't have anything nice to say then don't say anything at all" Well thats that type of day I'm having. I've made it the first 11 days of this challenge so I didn't want to skip day 12 but I have to say I'm less that motivated about the rest of the month.
Posted by Mary at 6:38 PM
Friday, October 9, 2009
I wonder what life for Riley will be like in 20 years. I wonder if he will ever find love and want to get married. If he does will it be to Ella? I wonder if he will learn to drive a car. I wonder if he will be the in the school play or the marching band? I wonder if he will belong to a sports team?
When Riley was first born I couldn't think past the day,week,month. I would be completely overcome with with sadness, anger, greif callit what you like but its always came with tears. It didn't even like to think about him being school age. As time as past and I have come to understand and know Riley it is getting easier and easier to think about the future. What seemed so far away is coming so close. We are getting ready to tranistion Riley from the Guild School's birth to three program into the public school system for preschool and therapies and we also need to figure what we will do to supplement with private therapy. This was a milestone that I couldn't picture when Riley was first born, and now it is staring us square in the eyes. Riley continues to amaze and teach us and with each day he reminds me that the possibilities are endless. I have started to allow myself to think about what the future will be like, and most days I come up with beautiful thoughts of school friends and sports teams. These daydreams seem to out number those where Riley is excluded or unable to acomplish things, but my mind does play terrible scenes of hurt and tears. I don't like to think about the possibilities of Riley not being accepted by other kids or being told that he is different but I don't think its realistic to think it won't happen. It happens to kids who don't have dissabilities so why wouldn't it happen to my kids as well.......my bigger fear is how I'll react. How will I help Riley deal with hurt feelings.....will I give Rex a high-five after he gives a kid a black eye for making fun of his brother. I have to be honest... I might.
Thursday, October 8, 2009
Today we take a look back at what Riley was up to a year ago. Its hard to belive but he wasn't walking yet, but wow was he close. Listening to Rex talk about his baby brother just melts my heart. What an amazing family I have!!
My orginal post from October 2008
This evening I thought I would take a quick video of Rex and Riley playing at the new table that I fashioned. I had this wonderful idea that if I Velcro Riley's toys down they do at school it would help him from throwing them as much. Well the idea is good in theory but you must have to use industrial strength Velcro. At least it slows him down a little. Plus the table and stool are the perfect height for him to practise. He also needs motivation to play standing up and this will help with that as well. I need to dig out the Little people farm that Rex had and get it up on the table so we can work on our pretend play with the farm animals too. Anyway, while I was taking the video of Riley, Rex decided that I need to film him too because he wanted to introduce himself and talk about Riley.