Know Your Circle

It’s been a long time since I have written on here.  I began this blog after Pj was released from the NICU and the Caring Bridge site didn’t seem appropriate anymore.  I continued so that family and friends who lived far away could watch Pj and his brothers as they grew.  I continued because I was able to share the joys, triumphs and hardships that can accompany raising a child with special needs.  Maybe I should have continued and written more frequently.  Maybe if I had I wouldn’t be feeling the intolerance that I am feeling now.  Writing here used to be very cathartic for me.  Maybe it will be again.  Because I am hurting.  Families I know are hurting.

There has been a very nasty and recently public grievance going on in Pj’s school.  I won’t get into the details because frankly – I don’t know them all.  I will say that I BELIEVE that the teachers in Pj’s building love and value him.  He has been wholeheartedly included in that school since we moved here three years ago.  So – it’s not a teacher issue.  The school itself has been so supportive and inclusive.  And then this grievance was made public and as so often does when things get made public – it takes on a life of it’s own.

In my heart I don’t believe that the grievance was about segregating special needs children from the general education population.  But certain parents have perpetuated that myth and now the things that I am reading made me sick to my stomach.

I have read “What happened to the special ed classrooms? Why aren’t those kids in there” “When I was growing up those kids were never in the classroom with us.  They don’t belong there”  “Those children are taking the attention of the teacher away and now my child is behind grade level” “These children cannot function in the general education classroom and asking them to do so is unfair.”

I could go on and on.

These parents – who know absolutely NOTHING about the research behind how kids with different disabilities learn best – have all decided that they know best.  I could share dozens of research showing that having my kid in your kid’s class is not just what’s best for him but also benefits your kid.  I could share research showing that by having my kid in your kid’s class your child now gets the benefit of extra eyes, ears and help from the professionals who are coming into the room.  I actually had a parent personally tell me today that she understands what’s it’s like to have a child with special needs because she has talked to other parents.  REALLY?  Talking to other parents has allowed you  to feel what I feel?  You now can experience all of the hope and fear that I feel everyday?  You understand what it’s like to watch your child’s peers surpass him in development? That is offensive.

I’m not going to get into a Facebook war with anyone.  It’s not worth it.  Pj is my  fifth child.  I have been in the special ed world with my  kids for over 20 years.  I have led the opening of 2 Down syndrome achievement centers to change the way the world sees Down syndrome.   But Lord am I tired.

Some of these parents don’t realize that they are one accident away  from living in my world.  Or one serious infection away from living in my world.

So I’m going to pour myself a big drink of something and go look at my sweet little Pj while he is sleeping and pray for the world to get a little more kinder and to be a little more open to the wide range of differences in our world.  God help me to continue to give grace to the people who are being so hurtful.

“Make sure everybody in your boat is rowing and not drilling holes when you’re not looking.  Know your circle.” – author unknown

 

A New Day, A New Diagnosis

For years we have watched our sweet boy grow and develop.   His speech is coming along – finally!  He is getting closer to being potty trained – again Finally!!  He is sweet and affectionate.   But we have also seen him fall farther and farther behind his peers in development.  And not just his typical peers, he is also falling behind his peers with Down syndrome.  In my head I knew there was this wall there that was preventing him from moving forward.  We see snapshots all the time where Pj is fully engaged and it’s clear that there is a light on at home.  But then there are other times.  Times when he is content to just sit and flap a toy around instead of play with it.  Times when he is happy to just sit in the sun and watch his hand make shadows as he flaps it back and forth.  So I know you  are probably thinking that all little kids like to make shadows.  True.   But if we left him alone he would do this for extended periods of time – upwards of an hour.  I have had people tell me to not worry  because he is happy and content doing that.  But as he is doing these “stimming” activities he is not actively engaged in his environment.   This prevents him from developing.

It was brought up to me a few years ago that almost all kiddos with Ds exhibit these same “stimming” behaviors.  But because he is affectionate and makes eye  contact and doesn’t have any sensory issues that I really should just refocus him and not let my mind worry.  Oh the guilt I feel now.  Today was a big day for us.   I took Pj into a neuro-developmental doctor to find out what was going on?  What is this wall that is preventing Pj from catching up with his peers?  What can I do to help him?  The doctor gave  Pj a very thorough  evaluation and I got the answer that I didn’t want to hear.  Autism.  Pj has a dual diagnosis of Down syndrome and Autism.  And as I write this the guilt comes washing over me again.  Because  he had a speech therapist back in Wisconsin who gently told me to have him evaluated and I didn’t.  What if I had?  Would that wall be up as much as it is now?  Would he be farther along in his development if he had the appropriate therapy years ago?

And then of course the anger washes over me.  Seriously God??!!  He was born with no anus, had to have a colostomy, has hearing loss and now ASD?  I would be lying if I said I was fine with it.   I’m not.  I’m sure I will get there but not today.  I brought  Pj to school for the afternoon.  His paraprofessional – who is amazing – has two adult children with autism.  She was aware we were doing this evaluation today so I was sharing with her the results as we walked down the hallway.  And then I started to cry.  I ended up in one of the special ed teacher’s room crying for twenty minutes.  God bless her for giving me that safe space and telling me it was all going to be ok.  That is one of the things that I love about his school.  His IEP is set up for his specific needs – not just a diagnosis.  I debated about keeping him home all afternoon because I was scared the water works would start once I saw the familiar faces of his team.  But being in school  forces him to be more engaged.

I finally pulled myself together.  I decided I’m going to focus on the positive.  We now know what the wall is so we can address it and really help.  We are so close to getting GiGi’s Playhouse open here and the social groups will be a God send for Pj.  Yes, I’ll focus on that.  We have a Dance Party this weekend to raise money for GiGi’s.  It’s going to be an amazing experience with all of these other wonderful families on similar journeys as ours.  I wipe my tears away and pull out  my phone to look at the Dance Party numbers and what do I see?  My brother in law decided to donate enough money to put Pj in first place.  More Tears.  Everything is going to be alright. Pj is so loved and has so many people in his corner.  It’s time to pull  my big girl pants on and get  to work.

A New Adventure

It’s been so long since I wrote anything on this blog – I’m not even sure anyone still reads it!  But we have had a lot of changes in the past few months so it’s time to give some updates.  Pj is now 5 years old.  We just moved back to Michigan two months ago after living in Wisconsin for almost 7 years.  We loved both our school district in Wisconsin and our Catholic school in Wisconsin.  Pj was fully included in general education in both settings.  He had every support put in place for his success in school.  Outside of school we had GiGi’s Playhouse Milwaukee where Pj received free programming to help him read and socialize.

Coming back to Michigan and living by my parents is truly wonderful.  What we missed most when we moved to Wisconsin was the regular interaction our children had with their grandparents.  But leaving our schools and supports has been beyond difficult.  When I first found out we might be moving back to Michigan I began calling school districts.  As we were coming from the top school district in Wisconsin I began by calling the special ed director in the top school district in Michigan.  I explained that we are Michigan natives and will be moving home but now we have a child with Down syndrome.  She put me on hold and the next thing I knew I had been passed off to her assistant.  I was informed she was unable to speak to me any longer and that “those kids don’t go to school.  Those kids go to Wing Lake.  You need to look at Wing Lake”  I wanted to crawl through the phone line and backhand her for using the phrase “those kids” but instead I just explained that we wanted Pj to be in general education.  She told me “We don’t do that here.”  Conversation over.  I began calling school districts heading westward.  I received similar information (in a much kinder manner) from most of the districts I called.  Until I got hold of the special ed director here in Brighton.  She told me that Pj absolutely could go to school and that inclusion works when children are young but becomes harder as they get older.  She told me if we bought a house here in Brighton she would work with me.  So I told Dave we were moving to Brighton.

We’ve been here two months now and it’s not all smooth sailing.  I found out two weeks ago that Pj wouldn’t be going to our home school that all of the other kids in the neighborhood attend.  He would instead be going to a different school across town.  I wasn’t keen on this idea but agreed to go for a tour.  I ended up relenting because I could see why this school would be a better fit for Pj.  Although Pj would be in Junior Kindergarten, this school has three segregated special education classrooms.  Therefore, this school has more resources to help kids with special needs.  (For those wondering about Junior Kindergarten – it’s a class for children who age wise are old enough for kindergarten but they just aren’t ready.  It’s a full day program.)  So Pj would now be attending Hawkins Elementary.  Now I needed to wait to hear who would be his teacher?  his special ed teacher? his para?  The Thursday before Labor Day weekend I emailed the special ed director inquiring as I hadn’t heard anything yet.  She reached out to the principal and it was communicated to me on that Friday who would be his Junior Kindergarten teacher.  Letters had been mailed home that Monday but we never received one.  I can only guess it’s because the school was switched on us and we just didn’t get on the list in time.

So today was Pj’s first day of school.  I don’t think I slept at all last night.  I had no idea what we would be walking into today.  I didn’t know what the first day of school schedule was as we never got the letter home.  I didn’t know who his para professional would be.   I wasn’t sure who would help Pj with toileting throughout the day or who would be helping him at lunch time or out on the playground.  Thank God when I got to the school they were ready for him.  The kindergarten teachers were meeting their classes outside and we were walking around trying to figure out which one was his teacher.  But she saw us and immediately introduced herself to Pj.  She was expecting him and then pulled his para over to meet us.  Even the principal came over and said hello to me.

Pj’s first day was pretty good.  His teacher and para are going to need time to get to know him.  And he will need time to get comfortable with them and the new room.  His teacher asked all of the parents to write her a letter introducing our child to her.  She probably isn’t expecting three pages typed but that is what she is getting from me.  I went out tonight and bought a notebook for home to school communication and then I wrote two more pages in that notebook about Pj’s toileting habits and the help he needs with eating.  I wish we could have sat down last week and spent thirty  minutes where I could share this information with them.  But all I can do now is give them as much information as possible so they can work with him and he can have a successful year.

Here’s praying for another successful day tomorrow!

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!! 

 

 

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!!

Wow!!!

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!!!

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.

WE ARE ON A ROLL MILWAUKEE!!!  WATCH US GROW!!

 

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!!!