Loving Sophia

Look MOM....I got a "P"!!!

2012-01-26T07:30:00.000-06:00

This is Sophia's first middle school report card. I find it interesting that her special ed classes are non-graded..they receive a Pass/Fail. So, she got all Ps in those. She has always wanted to receive real grades like her sister. Can't blame her there...she does work hard and the least the district can do is reward kids for supporting the district vision statement: "The District 303 School Community empowers and inspires ALL to Attain excellence, Learn with passion, and Live with integrity,in a changing world." Letter grades would go a long way towards the district reaching one of their stated goals: "Improve individual student achievement and personal growth." It's hard to measure these 2 things without grades. And how do I know that it makes a difference for Sophia??? Because of the 2 "typical" classes she takes, she received an "A" in Consumer Science and an "A+" in PE. And this made her smile from ear to ear and tell everyone she knows about her A's including people on the street. Yeah...I'd say that's excellence...and it's definitely a changing world thanks to my daughter. And my guess is that it is going to help her improve personal achievement. Not that I'm expert. But I was a student. When's the last time your kid worked really hard to get a P ?

Middle School and Inclusion

2011-10-18T10:28:00.000-05:00

Had to share…..

http://www.paulakluth.com/2011/06/24/kacie’s-“ooh-la-la”-inclusion-success-story/

I loved that blog post. I think when I had Sophia signed up for Italian classes for 2 years people thought I was nuts. I could hear their silent criticism, "Why would she pay for Italian classes when her kid can barely speak English?" Anyway, our relatives visiting from Italy last summer surely got a kick out of it!

As far as Life Skills and Inclusion and Fighting the Fight….

Sophia is currently in a 6/7/8 Life Skills Class (she is a new 6th grader at local middle school). I agreed to the placement after much angst about the middle school transition in general. Plus, I was not made fully aware of what our district offered even after repeated requests for this info. Needless to say, I am mad at myself and have no problem admitting I made a mistake. I am a work in progress :)

It is not that Life Skills is bad. They offer some wonderful things for students who will obviously benefit from it. But if Sophia stays in it, I will never know what she could have, would have, should have done in a regular classroom.I go back to the quote from the mom in the blog ,"None of this would have happened if I had allowed Kacie to be sequestered in the life skills classroom."

The only time she Sophia is not with the Life Skills students is gym and an "elective" (family and consumer science) with typical kids. Other than that she is doing all of the Life Skills curriculum which the district tried to convince me is similar to the typical 6th graders. Not. I am trying to get her into the special ed classes which really are the 6th grade curriculum, just modified. I think that is a good starting point and then I can worry about conquering French in High School. As far as Sophia her favorite class is…you guessed it…Family and Consumer Science. Here is an email I got from Sophia's Family and Consumer Science teacher "Sophia is doing great in class. She is an active participant and gets along well with her class mates".

Coming across this blog post was a blessing! I hope you enjoyed it :)

Jessica

Respect Life Sunday-Down Syndrome Awareness Day 3

2010-10-03T19:19:00.003-05:00

Today is Respect Life Sunday. It takes place on the first Sunday of October and is an " annual, nationwide commemoration to help bring Catholic Church teaching on the value and dignity of human life to the Catholic community and public at large."

There are many issues relating to respecting life-embryonic research, end-of-life dignity, abortion. And while I am Pro-life and absolutely unwavering in my beliefs, for me today is a day more about LIFE than about being against ABORTION. For me, it is quite simply about celebrating life. I spent it celebrating with my 2 beautiful girls. It was a sunny, crisp Fall day and I couldn't put off the inevitable shopping for tweens that needed to get done. After church we headed to the mall to get jeans for Mira and shoes and glasses for Sophia. The girls strolled hand-in-hand through the mall and we stopped in at the Picture People to look at pictures we took back in July! We giggled at some of their expressions and each girl picked out the one they liked of themselves. We found jeans, shoes, and glasses and did it all without tears! It was a great Sunday.

I really couldn't possibly think about Respect Life Sunday without thinking about Sophia and all of the special needs children around the world. Here in America I guess I would call them The Survivors. Various studies say that between 90-98% of children diagnosed with Down syndrome in utero are aborted. Right now, 1 in every 733 babies is born with Down syndrome. 1 in every 100 children are living with autism. I would venture to say that the rate of babies born with Down syndrome would increase greatly if there were no pre-natal tests to diagnose it. There would be MANY MORE people with Down syndrome living in this world. Is that a bad thing? I often wonder what will happen when there is a prenatal test for autism. Will the incidence of autism become 1 in 733 or will it go to nil? What about the other pre-natal tests on the horizon... for addictions? depression? heart disease? cancer? Where do we draw the line? Why DO WE draw a line?

Sophia loves her life. She loves her friends and family. We love her. I feel very blessed with the miracle of her life. And that's what life is...a miracle. Every life.

Conversations with Sophia-Down Syndrome Awareness Day 2

2010-10-02T09:31:00.005-05:00

While it seems that we spend a large amount of time trying to teach special needs kid, I am most amazed by the daily life lessons Sophia teaches me. Sometimes I wonder if this is a big trick God is playing on us. Are special needs kids here to teach the whole world lessons? Sophia feels all the same emotions that we feel. The most amazing thing to witness is that there is no filter through which she analyzes them or through which she shares them. When she's feeling mad, sad, happy...she just tells me.

"Mom, I am so mad at you." "Why, Sophia?" "Because you won't let me watch my t.v. show and I really like it." I usually tell her that she can watch it when she finishes her homework and she reluctantly sits down to do her homework. And when I tell her she can now watch it I usually get a "You're the best mom!".

I never doubt Sophia's love for me and I don't think she doubts that I love her. I know this because multiple times daily, she tells me she loves me. We have also been having this conversation for a few years. "How come you love me so much?" To which I answer, "Because God gave you to me and you are my daughter." She responds by saying, "Awww. I love you,too" and encircles me with a hug. Some mornings she wakes up and says, "Do you love me because God gave me to you?" I respond yes and then she points to a picture of me holding her when she was a baby. "I was a baby and I was so cute and God gave me to you." And for me, it is never redundant. She says it with renewed energy every time...like this is a fact she has just learned and it makes her so happy and it is the only thing that matters in her life.

Occasionally I will see Sophia just sitting on the couch crying. When I ask her what is wrong she says, "I'm sad because I miss Auntie Donna". Or, she misses Granny, Mimi, Grandpa Ron, Marley or any of the people/animals in our life that have passed on. Some she has never even met or doesn't even remember. But we talk about them to her and show her pictures and she somehow senses that there is a void in this world left behind by their absence. I think about the number of times in my life that I miss someone and I may even cry. My first instinct is to hide my tears. After all it is the middle of the day and there are people around me and I don't want to explain or be embarrassed or diagnosed as unstable by strangers. How silly really that I feel that way. Am I not entitled to miss people and feel sad because of it? Sometimes I wish I could be more like Sophia.

I think my favorite emotion that I get to witness from Sophia is her joy. Some days we will just be outside playing or pulling weeds. She'll say, 'Wait mom...smell the air." She'll pause and inhale deeply and smile. Then she says, "It's a beautiful day. The sun is out, we're together...the whole family-me, you, daddy, Mira." I know that I taught her to "smell the air" when she was very young but somehow it has stuck and I am so glad because as I age and get busier I often forget to "smell the air" and breathe deeply and thank God for each day.

Tonsillectomy-Day 2

2009-04-22T11:25:00.002-05:00

I have to say that Day 2 went pretty well. I am truly amazed by Sophia's tolerance for pain. She slept good and woke up fine. As the morning wore on I could tell she wasn't herself. I asked her what was wrong and she said "My froat hurts" and a tear trickled out of her eye. She probably would never had told me if I didn't ask. I gave her regular tylenol and she perked up a bit. She was bored so we visited Kelli and Everett and they took us to McD's for french fries and Target for an icee. Sophia's "belly was starving" at this point. She ate all the mushy fried once they were cooled and seemed quite content. I could tell the tylenol was wearing off and now that she had food in her stomach, I gave her the Rx pain med. Medicine is absolutely amazing. As you will see in the photo, Sophia was quite happily playing Wii boxing and oblivious to the fact that she had her tonsils out the day before!

Tonsillectomy-Day 1

2009-04-21T08:59:00.005-05:00

Well...the best part is that it is over! Yahoo! Sophia did great. She didn't complain about anything and even was smiling when she woke up from anesthesia. I am forever grateful to God that she seems to recover quickly and uncomplainingly when she is sick. Her tonsils were gross and huge and I know that she will sleep much better now that they are gone.

GOLD!

2009-04-07T22:56:00.006-05:00

On Sunday, Sophia participated in her first Special Olympics. Her event is gymnastics. She did a floor routine, uneven bars, vault, and beam. She took a Gold Medal for her beam-so cool! Her floor routine was AWESOME. She took a bronze in that-totally deserved a gold! She got a bronzes in the other 2. The whole day was just amazing. There was no shortage of tears. Many of my family members were feeling sorry for some of the participants. As the mom of a child with DS, I have been able to move beyond that. I guess it is because I don't see their disability first. I see their ear-to-ear grin when they complete a routine, their perseverance, their joy, excitement, and pride just because they are there. These kids were all so darn cute and obviously truly loved by their families. It was a pretty cool day. In the back of my head I kept thinking I wish President Obama was here. Anyway, we are headed to the state's Special Olympics in June because Sophia won a gold!

Sophia's Growing Up!

2009-04-04T13:50:00.004-05:00

Okay...so Facebook and Twitter have monopolized my time over the past months. Oh yeah-my kids, too ;)

This has been such an amazing year for Sophia. She never ceases to surprise me. A few weeks ago, she was watching t.v. and one of her "favorite guys" came on. I heard her say, "He is so hot!" After I picked myself up off the ground, I said, "Sophia!". She said, "Whaaat?" with a coy little smile. I asked her where she learned that and she said, "Well he is." I told her not to say that word but maybe use "cute" instead. She said, "Okay, he's cute". A few days later we were driving in the car. Sophia was in the back with Mira and 2 of Mira's friends. Mira and her friends were talking about boys and when they mentioned one, Sophia joined the conversation by saying "He is so hot". Mira was absolutely mortified and I think her friends were stunned silent. Mira sounded like me with "Sophia! That's a bad word! Did you learn that at school?". Mira and her friends go to a Catholic school and Sophia goes to a public school. Mira is convinced that anything Sophia learns comes from her public school peers. I disagree so I said,"Sorry guys, I think she has been watching too much t.v.". Mira and her friends have come understand Sophia's little outbursts. The problem here is that she is using it in the right context so it is hard to scold her (or prevent myself from laughing) but obviously not appropriate for an 8 year-old to go around saying.

She really is growing up though. We watched the end of Marley and Me yesterday together (I watched the whole movie that morning and when the girls woke up the end was on otherwise parts of the movie are NOT appropriate) and she knew that Marley was sick and died. Our good friends just lost their yellow lab, also named Marley, a few weeks ago. So, the girls are very emotional about sick dogs lately. Sophia cried when the movie ended and said she was sad because "they both died". When I asked her who, she said "that one, both of them"pointing to the t.v. and meaning Marley...our friends' Marley. She said, "I miss them both". Again, the use of the word "both"...to me just amazing when I have teacher's telling me she doesn't understand pronouns, gender,etc.

Later in the day we were driving home from dress shopping for my cousin's wedding. Sophia said she wanted to see Beethoven 1, 2,3, and 4. "It's not a sad story, Marley and Me is a sad story". This may not seem Earth shattering to you, but the fact that Sophia could categorize a story and know she wasn't in the mood for it is remarkable to me. Then, we talked about Jenny and Stu getting married. Sophia said, "They love each other. When they get married they are going to kiss". I said, "yes". I think the idea of weddings is fresh in her mind because we just watched our wedding video and Sophia likes to tell us all the time that we're married and we love each other. Then she said, "Not me...I'm not 16 yet. When I am 16 I can have a boyfriend and we can kiss." I am not sure why I picked 16 out of the air when I had the conversation with Mira about dating. Sophia naturally overheard the conversation and applied it to herself. I could kick myself for not saying 21. Once Sophia sets her sights on something, watch out. We have been counting down her 9th birthday since the day after she turned 8. She'll probably have me make a calendar to count down the number of days until she can have a boyfriend. Until then, I continue to hear on a daily basis, "I wish I had a boyfriend".

A few days ago we were eating in the Target Food Court (don't tell me you've never done it!). We sat down with our Icees and pizza. There was a vendor sitting next to us crunching numbers on a little machine. Sophia announced,"Today is a great day!". We are used to this announcements because Sophia truly loves every day. The vendor looked up and laughed...and then smiled. I think we may have made he day a little brighter.

And one more little story. A few months back, Sophia had a Friday off but Mira didn't. So, we invited a few friends from Sophia's class to go bowling. She doesn't have a ton of playdates so we thought this would be fun for her and the other girls. And it was! Until it was time to leave. The 3 friends got in the back seat and then we have a 3rd row. Sophia was going to have to go back there by herself. She was already upset about leaving and now this! She would not get in the car and walked away. I went over to her and she burst into tears. She wanted to sit by a friend. I told her I wasn't going to make her friends move. She refused to go back to the car but finally gave in. I took her hand and she said, "Wait, hold on, I don;t want them to see me with tears." and proceeded to wipe her eyes. This is the first time to my recollection Sophia was "embarrassed", if you can call it that.

Tomorrow is Sophia's first Special Olympics competition. We are all very excited. I watched the full practice today and was amazed by the talent of all the athletes. It always feels good to be in a room filled with parents of special needs kids. I always watch them in amazement and wonder how they cope. Then I wonder if people look at me like that and remember that I'm the lucky one. I am sure they feel the same way too.

"Every good and perfect gift is from above" James 1:17

2008-04-24T19:50:00.004-05:00

Sophia made her Communion on Saturday. What a glorious occasion for our family to witness. Ever since her older sister made her Communion 2 years ago, Sophia could not understand why she couldn't receive Jesus like the rest of us. This was very challenging to explain so we told her she would make her Communion soon! Well, 2 years was along time to wait but Sophia only threw herself onto the floor in protest once at the foot of the priest. For the most part, she would gladly file up with her arms crossed against her chest and bow for a blessing. She would turn to me and say "not yet?". So, you can imagine the days leading up to Communion when I was able to finally say, "Only 3 more days, only 2 more days". Her glee and excitement spilled over and I have to say I felt joyous on Communion day. I thought I would cry like a baby (I left that to the rest of the relatives) but I couldn't help but smile broadly. The best part is I think she "gets it", as much as any other 2nd grader gets it. I still have that tiny bit of resentment that she should have made her Communion as a student at the Catholic school my other daughter attends (no special ed offered at the Catholic school). Instead, she made it along with her CCD class. I did love her class and her teachers were amazing. She also knew quite a few girls in the class which made it feel more special. She looked like an absolute angel. I did wind up crying the next day (Sunday) when our priest invited any First Communicants present at that mass to come up to the altar. There were about 6 altogether and he reached out and took Sophia's hand and led her to the top step next to him. The sun was streaming through the windows behind the altar making it glow, the priest's robes sparkled gold, and Sophia all in white looked like an angel. It was really moving and I was proud to see her up there, hopefully giving many parishioners something to smile and think about.

i have a voice

2008-04-11T21:05:00.000-05:00

I was at the unveiling of the above video at the Gigi's Playhouse Spread the Love Gala. This video along with some portraits will be part of a traveling gallery. This is an amazing collaboration between Gigi's Playhouse and Thomas Balsamo, who created the book Souls many years ago. Souls depicts children with autism. "i have a voice" depicts children with Down syndrome. Beautiful!

2008-04-11T21:04:00.000-05:00

Road Map to Holland by Jennifer Graf Groneberg

2008-04-11T19:29:00.000-05:00

"He's the child that I wanted, that I did not know I wanted."

-from Road Map to Holland

I have been lurking on many DS blogs for awhile now. I started my own back in September and then fell off the face of the Earth! However, I have been inspired to start posting again because of Jennifer Graf Groneberg's new book Road Map to Holland. I knew Jennifer was writing it because I had been a frequent visitor to her blog http://jennifergrafgroneberg.wordpress.com/
I ordered her book at amazon.com last week and just finished reading it. First, I want to thank Jennifer for writing it. My daughter Sophia is almost 8 and those early years seem like a lifetime ago. As I read about her delivery of Avery and Bennett and the ensuing first few months , I was catapulted back in time to Sophia's early years. This time, however, I was able to enjoy and savor the memories. That's the great thing about memories, all of the negativity and unease kind of settles to the bottom like sediment and all the best parts rise to the surface. I also want to congratulate her on an amazing book. I am impressed that she had the wherewithal to journal or somehow record the first 2 years of their life. This is a true testament to the fact that her story needed to be told.
I have to make mention of the cover. To say a picture speaks a thousand words...........the sheer joy, the giving and receiving of love, the wordless exchange of how much Jennifer and Avery rely on each other. I smiled when I first saw it because I know that unidentifiable emotion on Jennifer's face. I have lived it and felt it. It is joy, love, bliss, warmth, pride, tears, pain, disappointment, accomplishment, worry, anxiety, disbelief, awe-all rolled into one perfect moment in time. I LOVE THOSE MOMENTS!

Road Map to Holland chronicles the first 2 years after the birth of Jennifer's fraternal twin sons Avery and Bennett, along with her other son Carter and her husband Tom. Unbeknownst to Jennifer and Tom, Avery is born with Down syndrome. She truly gives the reader insight into what many couples go through when they are first told about the diagnosis. Her descriptions are so vivid and accurate, I could actually smell the NICU where my daughter spent 5 days and remembered one of the nurses (also Jennifer!) who told me I had an "angel" long before the neonatologist mentioned anything to me about DS. I have to say I felt like I was right along side Jennifer-cooking, at therapy, napping, grocery shopping, learning, hoping, realizing, growing. Just doing the "normal" things. And I guess that is the whole point-we lead very ordinary lives. Make that EXTRAordinary. Pick up the book if you're a mom, have a mom, or know a mom. If you are a mom expecting a baby with Down syndrome, throw away all those black and white statistics the doctor gave you and instead read a true account of the realities of being touched by Down syndrome. And to Jennifer, if I told you the best is yet to come, would you believe me? My cup runneth over. I continue to be amazed and inspired by both of my daughters. And while I don't "see" Down syndrome anymore, I can't help but feel it is my family's greatest gift.

Lamb's Farm Buddy Walk

2007-09-17T13:35:00.000-05:00

We attended the Lamb's Farm Buddy Walk yesterday. Lamb's Farm is a wonderful place for adults with developmental disabilities.http://www.lambsfarm.com/

They hosted the Buddy Walk which is a Down syndrome Awareness walk. They had a large tent set-up for different Down syndrome organizations to display info. We worked at the Gigi's Playhouse (www.gigisplayhouse.org) booth.

The 2 women working at the booths next to me were great. One was from NADS (www.nads.org). She was sharing stories about her son who is 20 with DS. He really wants his driver's license. He learned how to drive at 16 but hasn't taken the official test yet. I am so glad that that is at least 9 years off for Sophia. I have full plans to drive her everywhere she needs to go for th rest of her life. I am sure she won't have anything to say about that ;)

Another woman was from Ups for Downs. She was telling me about her daughter with DS, who is in 7th grade. As soon as she said 7th grade, I conjure up images in my head of Sophia in 7th grade. She's chasing boys, kissing boys. God help me. I snap back to reality. I tell the mom that Sophia sure talks about Drake and Josh a lot (Nickolodeon show)-that Drake is her boyfriend and she's going to California to see him. The mom smiles in acknowlegement and says that her daughter also likes Drake and Josh. I tell her half-jokingly that I was hoping that maybe Sophia won't be interested in boys-that somehow DS will take away all those hormones. She laughed and said, "Are you kidding?" and gave me an all-knowing smirk. I think she deicided to spare me the details of her 7th grade daughter and boys-kind of like nobody tells you about the pain of labor. Some things you just have to find out for yourself.

I also kind of have an unwritten rule in life. It's pretty simple-One Day At a Time! Who knows what the future will bring but I do have today to enjoy and I will savor every moment-even the wet marks on the t.v. left behind when Sophia kisses Drake.

September Seeds Reap October's Rewards

2007-09-17T13:10:00.001-05:00

September is always an exciting month-back to school, falling into a routine, the smell of fall in the crisp air. I look forward to September because I will have some "time for myself". I am not sure why I look forward to that because truth be told, I enjoy myself more when I am busy doing things for others. When September came along I quickly signed up for volunteer opportunities at school. I am also on the Board at Gigi's Playhouse, a Down syndrome Awareness Center. One of my favorite things about September is all of the preparion I do for October, which is Down Syndrome Awareness Month. If you want anything published about DS, one needs to send out press releases in Spetember. If you would like your child's school newspaper to print something about it, you need to submit in September. I am involved with Gigi's Playhouse Down syndrome Awareness calendar and we wrap it up and send it to the printer in... you guessed it...September. As many of you know, Sophia was a May bride in last year's calendar. You will have to buy one to see what she is for 2008! The theme again this year is "Believe". I also contact all of the local school and public libraries to make sure they display their books about Down syndrome in October. I also tell them where they can get free copies of books pertaining to DS-a local group called Ups for Downs makes them available for free! We have donated our favorites to Sophia's and Mira's schools.

There are lots of new beginnings in September, too. The girls both just started Hip Hop class. This is the FIRST dance class that allows both of their age groups so I am very excited they are together. I find myself worrying more about Mira as I watch the class. She doesn't like to let loose as much. The last time she took dance was when she was 3 and she ran off the stage at the recital. 6 years later, she was ready to try it again. Sophia, on the other hand, is the first to volunteer to show a dance step when the taecher asks. I have also glimpsed her practicing at home-doing the counts out loud like a professional! Sophia also starts CCD tomorrow. I work hard not to get upset with the Catholic Church that they can not acommodate special needs kids in their schools (at least here in the Chicago suburbs). If they did, Sophia would be in school with her sister and religion would be part of her daily schooling. Thankfully, Sophia talks about God and Jesus, says her nightly prayers, and definitely walks in Jesus' footsteps. I know she will be very excited to receive Communion. After Mira made her Communion, it got increasingly hard to prevent Sophia from throwing a fit at the altar when we all went up for Communion-especially if the priest didn't bless her. Depending on who the priest is, they will do a sign of the cross over a child who clearly is younger than 8. One time, Sophia actually laid on the floor because she was so angry that the priest didn;t even acknowledge her. Fortunately, now she walks with her arms crossed and hands on her shoulders-which seems to get the message across. She gets a blessing and sweetly smiles, triumphant.

I have a blog!

2007-09-10T13:51:00.000-05:00

Hello!

Okay...you may think I am internet savvy but the idea only recently ocuured to me that these daily rumblings in my head can actually be put on to paper. Well, virtual paper anyway! Blogs seemed like somthing for 20-somethings until I started coming across a ton of them. I really enjoy reading how Down syndrome has changed families the world over. Once I figure out how, I will put links to some of my favorite bloggers. Anyone, I don't necessarily think I have anything earth-shattering to say but I like the idea of an open dialogue and where it can lead. I have "met" many other moms online and their stories inspire me. At the very least, this will give you a little glimpse into our life-a life better than I could have ever imagined for myself. Who would have thought that a "little something extra" on Sophia's 21st chromosome would be one of our family's greatest blessings?

Jessica