Therapy Tuesday

It seems like everyday Pj is getting closer and closer to walking.  We are now at the point where he will walk into the Y while holding onto just one of my hands!  I was watching him in his Y class today and he seems like such a big boy!  One of his favorite things to do is to stand at the table where the CD player is and dance to the music!!  One of the other moms told me today that her son is asking to have Pj over to their house for a playdate.  She asked if he would like any other children to come too and his response was “No, just Pj.”



The coordinator for the ECC program for our school district came to observe him today in class.  She needs to make sure he qualifies for the program when he turns three.  Federal law mandates that every school district offer a special education preschool class for children beginning at age 3.  There is no doubt in my mind that Pj will qualify – if for no other reason than speech!  After class, the coordinator and I had a long discussion about his upcoming IEP.  The district is required by law to fill out an IEP (Individual Education Plan) within  90 days of the initial referral.  Pj is allowed to begin this class on his third birthday this April.  (I can’t believe he is going to be 3!!!)  But I have decided to wait until the fall for him to begin.  I have many reasons for this, one of them being that there is a probability of the district moving the ECC program out of the school it is housed at and relocating it to another building in the fall.  I don’t want Pj to have to adjust to a new school, only to have to readjust three months later.  He is also doing really well in his two year old preschool at the Y.  So, we will be meeting with the school district to write the goals for his IEP, only to reconvene in the fall to rewrite his goals as I am positive those will change before September.  (Not a bad problem to have!)

On Tuesdays, Pj gets a double dose of therapy.  He sees his PT followed by his OT.  Today he just wasn’t in the mood for doing too much work.  She got a little bit of walking out of him on the treadmill and he enjoys walking toward the big red bolster to knock it down.  Other than that, he really just wanted to look at himself in the mirror or swing!  I guess I can’t expect him to be perfect all the time!!



But he is still pretty perfect in my eyes!


Valentine’s Day 2014

Valentine’s Day this year has me reflecting upon all of the blessings I have in my life.  Sometimes I look at my life in total disbelief.  Am I really the mom to these five boys?  Is this handsome man walking in with a dozen red roses and a beautiful card really my husband?  It amazes me that God feels that I am deserving of all of these gifts.  My life gets so busy and hectic.  There are days that I forget to eat and I end up spending  the majority of my time driving kids around in my car.  But when I slow everything down and block out the background noise, I am overwhelmed with what I see.  Like sitting at Homestead’s JV Basketball game tonight and watching Alex take a charge and score tons of points!!  Or sitting at Noodles afterwards eating a very late dinner and I realize that Joey has his arm around Pj and they are just cuddling on the bench.  Or picking up Tommy from ski club tonight and really listening to him recount the evening.  Ben is off at his second ever sleep over tonight and now with the house quiet I just feel like something is missing :( 

Valentine’s Day is about love.  There is so much love in this house!!  And I am so blessed!!


Here are some of my favorite pictures from last summer!!  They’re a great reminder of what’s to come – WARM weather!! 

spring summer 2013 240 spring summer 2013 253 spring summer 2013 258 spring summer 2013 262 spring summer 2013 268 spring summer 2013 272



Christmas 2014

Christmas season has always been my favorite time of your and this year was no exception.  Although, I do find that as my children get older the season gets much busier.  I felt as though I had NO time to do any shopping.  For the first time ever, I did the bulk of my xmas shopping online!!  Thank God for Amazon!!  We kicked off the Christmas festivities with the Lumen Christi Christmas Concert.  Tommy was chosen to play the role of Joseph.  It was a great event which really helped you stay focused on what Christmas is all about.



We then spent the next few days decorating Christmas cookies and making Reindeer food to put on the front lawn on Christmas Eve.  Christmas Eve is a magical night.  I find going to Christmas Eve  mass to be my favorite part of Christmas.  But this year we didn’t get to the church in time.  This year we had to sit in a room off to the side and watch mass on TV.  I was hugely disappointed.  In years past, we went to the children’s mass on Christmas Eve and then went home to a beef tenderloin dinner.  Not this year.  This year I pulled out my Spode Christmas Tree China and we ate bagel bites and pigs in a blanket.  (made my kids happy)

Christmas morning was  whirlwind!!!  It began like this:


And then the kids came downstairs!!!  I’d have to say it was a perfect Christmas morning.  Everyone was happy and no one was wishing they had gotten something different.  PJ got tons of presents.  His favorite seemed to be the basketball net (that is until we got to my parents house)



He was also pretty happy with the cars and fire truck that Santa brought him!




In the end though, he liked the cardboard boxes the toys came in better than anything.  The best picture of the morning was of Joey opening his treasured gift:


Even though we were alone for Christmas, I still made a turkey dinner.  (Actually, Dave likes to remind me that with five kids we are never alone!)  This was my beautiful Christmas dinner that NONE of my children wanted to eat.  Hence, why I made bagel bites the night before.


The day after Christmas I packed up the car and headed to Michigan for a Chrysler Christmas with Tommy, Joey, Ben and PJ.  Alex had a basketball tournament so Dave stayed back with him and joined us on Sunday.  It was Christmas morning all over again and this is where PJ received his all time favorite present.  My parents (whom we call Dae and Papa) bought him a mini grand piano!!!  PJ absolutely LOVES music.  This piano even comes with a microphone!!!  He thanked them at dinner that evening by letting them hear him say their names for the first time!!




PJ had lots of fun playing with cousins and swimming at the Embassy Suites!!






The Chrysler Family:  My parents, my brother, my two sisters and myself:


Merry Christmas to everyone reading this and Happy New Year!!  I hope you are staying warm!!



A good friend and neighbor of mine recently sent me a link to a blog about adaptive mobility.  The author had a post written about the painting titled “The Adoration of the Christ Child.” The painter was Jan Joest of Kalkar and it was painted in 1515.  The interesting thing about this painting is that it is believed that an angel and a shepherd have an extra chromosome!!!  I thought this was so cool!!  I have written in the past about my belief that children with Down syndrome are chosen and blessed by God.  Someone said to me recently that Down syndrome is rooted in the fall of man through original sin.  I couldn’t DISAGREE more!!!  I almost wonder if God has spared some people by giving them  this gift of an extra chromosome.  There is an innocence there that I think more closely mirrors man before eating the forbidden apple.

Anyways,  this could be debated by many people for hours upon hours.  The debate wouldn’t matter because I know how I feel and what I believe.  But I do love this picture.  I was so excited that I zoomed in to see which angel and which shepherd had Down syndrome.  What amazed me the most was that you can clearly see the faces of Mary, Joseph and baby Jesus.   But as I examined more it looked to me as though several of the angels were extra special!!!

down syndrome in art painting large

My First Gigi’s Playhouse Conference

Yesterday was a long but inspirational day.  I left my house at 5:30 in the morning and drove over to pick up Kathleen.  We then went to pick up another friend and drove down to Chicago for the annual Gigi’s Playhouse conference.  We sat in a room filled with people from 16 different open playhouses and 3 other “emerging” playhouses.  We learned about everything from best practices in leadership, to programming, finances, communication and spreading awareness.  We listened to adults with Down syndrome get up and give beautiful speeches about what Gigi’s Playhouse has meant to them.  We heard from people who give everything of themselves to run a playhouse.

For me, one of the most touching moments of the day was meeting Richard Reilly and his wife Marilee.  Richard has a five year old grandson, Louis, with Down syndrome.  They live in New York and are a big part of the New York Playhouse.  So big, in fact, that Richard’s daughter was the one who opened that playhouse and went to him for assistance and guidance.  In their retirement, Richard and Marilee volunteer their time at the playhouse.  What was even cooler was this awesome trip they took.  Their niece was getting married in South Dakota so the couple decided to take a road trip and visit all of the Midwest Playhouses along the way.  They documented their journey and wrote a travel guide based upon their experiences.

We got back from Chicago late last night and I was asleep before my head even hit the pillow.  When I woke up this morning, after getting some quality cuddling in with PJ, I retrieved my copy of Richard’s travel guide and sat down to read.  He had me in tears.  He was so eloquent in his description of the value of each individual playhouse.  His words perfectly described what I envision here in Milwaukee and what I want for PJ.  He described meeting a grandmother who had a child with Down syndrome.  When he asked her what she wanted for her granddaughter her only word was “more.”  My feelings exactly.  More.

He writes about the concept of Future.  Future is part of the mission of Gigi’s Playhouse.  We want to “embrace expectations and possibilities for our children and our families’ future.”  Gigi’s Playhouse strives toward helping people with Down syndrome experience the value of independence.  “Parents naturally want quality of life and independence for their children.  I’m convinced, more than ever, that our efforts at  Gigi’s Playhouse will have an impact on that goal.”  So am I Richard.

A few blog posts back I wrote about the idea of inclusion.  Richard wrote about a girl named Janelle.  When Janelle heard about Gigi’s Playhouse her eyes lit up and he could “see in her eyes that she wanted to meet more people like herself.  Janelle wants to stand in, not out.  Like any girl her age she wants us to see the girl in the pretty dress.  She wants to be accepted for her qualities, her person, not separated because of Down syndrome.”

In his epilogue, Richard writes:

“Receiving the diagnosis of Down syndrome for your child is traumatic.  How do you cope, find the celebration of new birth, build a future?  Imagine further, in a time of crisis, having few to turn to.  not everyone has the support of a loving and generous family.  While Gigi’s Playhouse cannot be everything, we are first a place, a source.  We are here for information and direction, a real voice with experience and guidance.  many have been there and know the need.  The need for a listening ear, the need to feel the power of hands holding hands.  To tell you sometimes that your confusion and frustrations are normal – to reinforce that you deserve to experience celebration – that hope and trust in the future can return to your life.”

I am so excited to be a part of opening a Gigi’s Playhouse here in Milwaukee.  We are hoping to host a family event after the first of the year and plan on a gala in early April.  I can’t wait for the day when we are hosting our grand opening.  When PJ and Emily get to go learn and have get therapy through purposeful play.



Why a Gigi’s Playhouse Milwaukee???

For those of you who know me pretty well, you know that I have been hard at work trying to get a Gigi’s Playhouse to open here in the Milwaukee area.  I am surrounded by an incredible group of smart, talented people who are working right alongside me.  For me, the question of why doesn’t make much sense.  Why wouldn’t I want a place where my child can attend playgroups and classes that are therapeutic in nature?  Why wouldn’t I want him to be able to get free one on one tutoring designed for how a child with Down syndrome learns to read or do math?  Why wouldn’t I want to connect with new and veteran families who are on the same journey as myself?  I can’t think of one reason.  And then to realize that a Gigi’s Playhouse would offer all of these opportunities for PJ and all other families free of charge?  Well, that’s just icing on the cake.  But lately I have heard of a few grumblings from people who worry about mainstreaming and inclusion.  So, this post is for them.

To those who are not well versed in the educational language, mainstreaming is when a child with a disability attends school in a regular education classroom.  They don’t sit all day in a special education room.  They will, however, be pulled out for certain services if needed.  This could include speech therapy and small group reading intervention services, among other things.  The term inclusion means that the child will be mainstreamed into a regular education classroom and will only receive services in that setting.  The argument can be made for both.  In the school district that I live in, the practice focuses upon mainstreaming and pull out when needed.  This works for my son Joey and it works for me.  But I do understand that not everyone would be agreeable to this.

My first question to someone who questions whether or not a  Gigi’s would be:  Do you take your child to therapy?  Why?  I am guessing the answer would be that the therapy is designed for each individual child to help him or her be successful.  Here is my Ah ha moment.  Every program at Gigi’s Playhouse is designed for children and adults with Down syndrome so that they can be more successful.  A playhouse does not replace therapy, birth to three, or school.  A playhouse is supplemental and the programs offered will only help to ensure each child has more success in a inclusion or mainstreamed setting in school.  It also provides an avenue for children to be successful because they won’t be comparing themselves to their non-disabled peers.

I firmly believe that PJ will be able to attend school in the general education setting.  I will make sure of it.  And I know that him having programs at a Gigi’s will ensure his success throughout his entire educational career.  Gigi’s Playhouse IS coming to Milwaukee.  We plan on opening our doors in September of 2014.  We are currently seeking the best location and raising money.  We need $60,000 to open our doors.  Although this may seem like a lot, it’s really  not.  This is one really big Gala fundraiser, or a great run/walk.  Gigi’s will open here and I can’t wait until I can bring PJ!!!


Fall is Here!!

We had a jammed packed fun weekend!!!  We kicked it off Thursday night by watching Alex play football for Homestead’s JV team. Then we decided to return to the field for the varsity game on Friday night.  Saturday was spent going to watch Tommy play football, then Ben play flag football, and then Joey play football.  After all of that football, it was nice to change things up a bit and watch baseball Saturday night!!!  Now, I know that my sports filled weekend might seem a little over the top for some people.  And I will admit that by the time football season is over, I am pretty footballed out!!  But for now, I can’t imagine spending a better day than watching my boys run, block and catch passes!!  PJ seems to love it too. ( I’m not sure if it’s the fact that he gets to stuff his face full of goldfish and popcorn during games.)  But I do know there are quite a few people who seem more fond of watching PJ than the actual game!!!  And when people get excited he starts to clap.  (Sometimes for the wrong team!)  When you say “touchdown” he will throw both of his arms up like the refs do!!

Saturday night, PJ was able to see his first Brewer’s game.  Our family was lucky enough to be invited by the good people at Foley and Lardner to watch the game from their company suite!!!  He loved standing and looking out at the field.  Usually, people would walk by and try to say something to him.  (There was one security guard who stood close by and every time he so much as looked at PJ , PJ would cry.)  I got to spent the night doing what I love most, hanging out with my family and my newest obsession, talking about Gigi’s Playhouse to anyone who will listen!!!

Sunday, was much more of a laid back day.  My sister Becky drove up from Chicago with her husband Tom and their son Sean.  We played in the backyard for a little while and then we took off to Cedarburg for the Wine and Harvest Festival.  PJ slept through the first part though!!!


We got some great pictures of PJ with his brothers and cousin Sean though after he woke up!!





We left Cedarburg and decided to stop at the apple orchard on the way  home!!!  PJ and Sean were both too tired to go apple picking though.  (That’s okay because PJ gets to come back on Thursday with his YMCA class!)  But they had fun playing together!



Happy Fall everyone!!!

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