Down Syndrome ~ Different does not mean less than ~

On our way to Pittsburgh this morning for Isaac's post op appointment, from his double ear drum repair surgery back in August, I realized that my twins are so very conditioned for our 2 + hour drive to Children's.  Over the past year we have averaged 2 to 3 appointments a month like this.  We drive 2+ hours most of the time to attend a 15 to 20 minute appointment and then turn around and drive back home.  These days are tiring for mom and dad, especially dad as he is the driver (mom can sneak naps with twins in car).  Yet I am thankful that we have a good Children's Hospital nearby that can take care of all of our boys needs right now.  I read blogs and stories of other families who must travel out of state or even out of the country for treatment.

Tom and I try to humble ourselves with our situation and remember that there are families out there dealing with way more than we are.  Having twins with disabilities does come with its challenges, but we are blessed with the resources, supports and ability to care for their needs. 

Last week we were in Pittsburgh for another appointment OR I should say appointments.  We were finally able to coordinate several appointments in one day.  We actually had six appointments (one each) with three different doctors in one day.  Our appointments started at 11:30 am and ran clear until 4:30 pm without a lunch break.  It was a long day but it was nice to know that we only had to remove twins from school one day instead of three separate days if we were to schedule as we usually do.

One of our visits was the boys bi-annual visit to the Down Syndrome Clinic.  These appointments always help make sure I'm not missing something and keeping up on all the required visits, follow ups and then add some suggestions to things we may be missing.  On this particular visit it was nice to speak to the Down Syndrome coordinator, Shelia, and confess that I feel like we just don't belong to the Down Syndrome group OR to the Autism group.  I see kids much younger than the twins with Down Syndrome flourishing and talking and doing great.  While I truly feel happy for these kids and their families I feel like it's hard not to compare the differences we see.  Then I have the boys in their awesome Autistic support classroom and an equally awesome after school program for children with Autism, and there, Caleb & Isaac are the only kids with Down Syndrome.  Again I find it difficult not to compare the differences in my boys with their peers in these classrooms.  Shelia at the Down Syndrome clinic said they do have parent who don't quite feel they fit in with the "traditional Down syndrome" category and for this they are trying to put together a quarterly parent meeting to help facilitate better understanding and to share ideas and outcomes.  I think this is wonderful and I plan on adding this to our frequent Pittsburgh trips.

I know that some may read this and understand where I'm coming from.  Some are going to read this and argue that all children are different and just figure it out.  And then there will be those who don't understand yet can sympathize with the unknown.  I love wearing these shirts on my twins because it reminds ME that "Different DOES NOT mean Less Than"

To end on a good note.  Today's appointment was a GOOD OUTCOME!! Isaac had just undergone his third surgery to repair two completely perforated ear drums from having several sets of tubes.  The second surgery was pretty invasive and a difficult surgery yet within three weeks he developed an infection that made them tear again.  In August he had a new surgeon and a new approach and today the doctor said they his ear drums are still in the healing process and covered with scab like wounds but both ears are closed and his no water in the ears restriction was lifted for the first time in like four years!!  We are so happy with this news and pray that he doesn't get any immediate ear infections while ears are still healing.  We will go for a hearing test in a few weeks and we should be able to remove the long distance ENT visits off the list for now.

We just want a place to fit in.... MattyBRaps new Video True Colors

I sat and watched this video on a friends Facebook wall.  I knew it was going to be good because I like MattyBRaps and I have followed his journey since I found out he has a beautiful sister with an extra special chromosome like my identical twins Caleb and Isaac have.

When I saw the song was a remix of Cyndi Laupers song True Colors I was even more excited to watch the video.  I was able to see Cyndi Lauper a few years before the twins arrived and she was a great performer and still one of my favorite "oldies but goodies".


Watch the video and then play it again and read my commentary:

The following lyrics really stood out to me....I played this song over and over again and I'll be honest I had tears flowing.  We have had the twins on the playground and the same scene happened, kids looked at them and got up and very obviously moved to a different part of the playground.  We have had children rudely tell the twins to shut up and quit making those loud noises.  We also have had one incident where a child pushed one of the twins because "he was retarded and shouldn't be allowed to play there".  So YES these words really hit the spot for me as their parent, YES these words are heartfelt towards other parents raising children with special needs, YES these are words worth sharing to help advocate for children like mine.  Down Syndrome, Autism, ADHD.... not words I ever dreamed would consume my life and world and yet create a passion to learn about these words non-stop.  I happily state that I give all Glory to God for allowing me the opportunity to open my heart and mind to learn about these words; Down Syndrome, Autism, ADHD..  I know there are so many other disabilities and diseases out there that I do not understand or know inside and out like I do my own children's disabilities but I sure know one thing for sure, the children ALL WANT LOVE, the children ALL WANT RESPECT, the children all deserve acceptance that it wasn't them that determined they would be different or sick.  Read these words and T H I N K, reflect on how you can personally open your heart and mind a little more and help out a family in some small way, even just opening up a casual conversation at the playground while your children play together.  Show them your "True Colors and How Beautiful Like a Rainbow" they are!!

We get uncomfortable when someone else is DIFFERENT

and it presses us to be open to change

mistreated not because of fashions that you've taken on or a terrible mistake but Hated on Because of your DNA.

It's never doin harm until it feels unfair and then we speak up but wonder why no one else cares

If we're honest inside.. and really wanted to right.. judging other for something they have no control of might be comical at times, but that might make me less of a man, the biggest thing I think is standing as a leader instead.

Imagine life without the boundaries we create with our pride and opportunities we lose because we judge from inside

The truth is that we are all equal and the answer is LOVE!!!

I'll admit I am still a work in progress myself, I still lose my tongue sometimes around other families with children with special needs not knowing what to say, but I can tell you a never fail conversation opener... you ready for it??!!... "Your child is so beautiful" "Tell me about him/her".

Thank you MattyBRaps for advocating for your little sister and for other children like her.  For opening up hearts and minds to at least being able to understand why they are different and how they are the same.

You don't have to go far to read terrible comments that people with Down Syndrome hear all the time.  Read the comments under the YouTube video posted above, its got to stop and it has to start somewhere.  Please share this blog if its touched you and leave a comment, I want to hear from people reading my blog!!!

GO!!!

2013 Run or Walk for Someone Special

Less than two weeks from today will be the 34th Annual Run or walk for Someone Special.  My family has been participating for the past four years.  It is so much fun for the whole family.  Character for kids, games, food, Chinese auctions, prizes and best of all a sense of giving back to our local community.  The funds raised helps The Arc of Jefferson and Clearfield Counties put on three separate summer day camp programs FREE for children with special needs.

My Boys go to camp and Love it!

My three older children participate as junior counselors and they have so much fun making new friends and seeing old friends year after year at camp.

If you made it this far through the blog, won't you consider making a donation to our team this year?  Any amount would be greatly appreciated and will stay 100% local to our community.  

Click the widget on my blog sidebar or goto 

http://www.firstgiving.com/fundraiser/stacy-hanzely/34th-annual-run-or-walk-for-someone-special

THANK YOU in advance for considering to support us!!!

Wacky Wordless Wednesday

Signing "hurt" for a year when taken to toilet?

Yep.  That's my Isaac.  My sweet little love bug who is everyone's best friend, or at least tries to be.  We have been introducing potty training to the twins for a little better than a year now.  Our twins are 7 year old identical boys.  They are both non-verbal, have Autism, Down Syndrome and Sensory Processing Disorder. Due to the assortment of diagnosis' the twins have we have not been to concerned with pushing them to toilet train. They are delayed in all areas already and we knew that potty training would be a difficult area to concentrate on when they were totally not ready.

We began introducing books and videos at about 5 1/2.  Then we taught them the sign for potty.  We showed them where their pee comes from and told them why they pee.. We let them stand by the potty before bath time and asked if they needed to go.  They watched daddy go and thought it was funny.  Caleb started to "try" a few months ago and has had some successes.  Isaac however, always seemed really resistant and didn't want to.. As the months went on and Caleb was starting to go more and more (still not trained today) we decided to push Isaac a little more.

It was at that time that Isaac began signing "hurt" when he was trying.. HURT?!! no that shouldn't hurt honey.  "Its a different feeling but you can do it" we told him.  This continued on so we talked to pediatrician and behavioral specialist.  The guess was that he was perhaps trying to push the wrong way and was pushing to have a BM.  Perhaps Isaac was associating his chronic constipation pain with standing at the potty and pushing and hurting?

We went with this theory for awhile.  They started kindergarten in the fall and part of their daily routine involves trying to go potty twice a day.  The staff documents if twins' diapers are wet, dry or dirty.  They also comment on if they went potty or refused.  On Isaac's paper, signing "hurt" was a daily report.  We began to wonder if he was just signing hurt to get out of going potty.

I basically woke up this week and thought, that's it.. Why would a child who most likely is not capable of signing a word to intentionally get out of doing something keep signing that word?? If he was signing Hurt, then doggone it... he must hurt!!!

I took him to the pediatrician again yesterday and I said I want a total work up on this child.  I want bladder, kidneys, penis, all the plumbing checked out.  I want to rule out any pain before we move forward with potty training.  Isaac is under the care of a urologist for retracting testicles but they have never really examined the structure of this man parts.  The pediatrician said she would start there and go forward if everything looked right.  

She grabbed her flashlight, we held down a screaming boy and she had a look.... Uh Huh... right away she said that we needed look no further.  She said to go ahead and call Childrens Hospital in Pittsburgh and have the urologist take a look.  She was certain that Isaac has Meatal Stenosis.  Well, that's a new word for us..

She explained that sometimes boys swell up after circumcision as an infant and it fuses the urethra together.  Its often caught around the age of two when typical children begin toileting.  UGH!!! My Isaac is 7 1/2 and we are just now finding this?? Poor bugger, he really does hurt when he tries to pee.  The doctor explained that it feels like a UTI without actually having a UTI.  The urge to pee is there but often can't go.  Its like going the the bathroom through a pinched straw.

Listen to Me...

So as I sit here typing once again feeling  regretful for not "listening" to my child who is capable of communicating through sign language, I am waiting to hear back from urology.  I am hoping that they can get Isaac in sooner than later to give this poor boy relief.  From my understanding it is a quick 5 minute surgical procedure that is followed by full recovery.  The only downfall is that anything requiring anesthesia for my twins must be done at Children's Hospital due to their moderate Subglottic Stenosis.. narrow airways..

Mama is sorry baby boy :(

Blessings from Shane and Wyatt's Down Syndrome Foundation

Isaac was blessed by a newly started foundation called The Shane and Wyatt Down Syndrome Foundation. These boys have stole a spot in my heart almost three years ago when I heard about them.  See they are twin boys both with Down Syndrome who live in Pennsylvania too.  I hope to some day get our guys together.

Dad, Eric, started the foundation last year.  Taken from their facebook page:  This Foundation will have two primary points of focus.  The first will be to recognize those in our schools and communities that are making a different in the everyday lives of those with Down Syndrome or special needs.  The second will be to assist individuals or families, who many not always ask, but could use a helping hand.  

When Eric heard that we were needing a second iPad for one of the twins, his Foundation decided that Isaac would be the first recipient to receive assistance from them.  Our family is so grateful for their consideration and their generosity.  Coming from a family traveling the same path as ours is also so humbling as they know the ins and outs of our daily lives more than any other.

We gave Isaac the iPad recently and here is some of his reactions:

He knew right away what it was :)

Isaac was signing "Computer"

Look Mom, I want this!!!

Is this for real mama??

THANK YOU Shane and Wyatt's Down Syndrome Foundation

The iPad is currently in the hands of the school speech therapist.  She is programming Isaac's iPad to match Caleb's so that they can carry on a conversation.  She said it is a bit time consuming but hopes to have it up and running very soon.  She also commented on how impressed she is at their ability to catch on to the Proloquo2go application we are using.  

I have asked the twins TSS workers to gather some video of the boys when they use them to communicate, hopefully, I will be sharing that here soon!!!  I myself could not be any more anxious to see it.

I can't wait till my boys are able to "talk" to family and friends who do not know how to interpret their sign language.  This is truly a life changing gift....

>>>If your looking for an organization to support this one is it, please LIKE them on Facebook and follow their good works!!!  We are proof that they are indeed doing good works!!!!!

SEVEN

Yesterday Caleb and Isaac turned seven years old.  SEVEN years old.  Do they look seven? NO.. Do they act seven?  NO.. Can I believe we have had seven blessed years with them already? NO!

This is how it all began:

And this is where we are now:

Caleb wanted nothing to do with his candle

Isaac tried and tried to blow out his candle, but mommy helped him.

Isaac wasn't very happy with everyone cheered for him

Daddy showing off his feeding skills

What did you get brother?

Caleb says "this is all so very much for me"

As we continue on this journey we look forward to what the next year will bring us.  This is a journey that we never thought we would be on, but now that we are traveling it, we realize how blessed we are.

Run, Walk, Roll Against Bullying

Yesterday October 6th was the first annual Run, Walk Roll Against Bullying event in Punxsutawney put on by The Mentor Parent Program.  I am a board member for this organization and bullying is an issue they want to go into the schools and tackle in the upcoming year.  The weather was not being kind to us as it was rainy and chilly, therefore the turn out was very small.  As with any fundraising event there is so much prep work involved and so many people commit their volunteer hours to trying to make something like this a success.  I am glad its over and in my opinion for the first year, it was a SUCCESS.. We did it and survived!!!

Bullying is a topic that I know about, have dealt with myself as a kid and now with my children.  But it more involved that I really knew.  I took some time online and googled What is bullying and I was really surprised at what all is involved.  One might think that only the weak or disabled are the most bullied but its just not so.  I think that all of us have been bullied at one time or another.  One term that I came across reading through information is "Bullycide", that is when the affects of Bullying cause someone to commit suicide.  How very sad that it would get to that point.

I think that as a parent I need to become more aware of the signs of bullying and make sure I teach my children to stand up for their friends if they see it happening.  How easy it is for us to see something happen to someone and be embarrassed for them or turn the other cheek to keep our noses out of it.  As the bible so plainly states in Matthew 7:12, "So in everything, do to others what you would have them do to you".  I have taught this verse time and time again to my children.  I know that its easy to forget when your friends are all acting in a manner in which you know is wrong, but this is one scripture that I hope will STICK to my kids brains and hearts.

I could get into a whole other topic of how bullying and children with Down Syndrome and Autism are affected, but I don't want to get myself worked up today.  I am glad that I took the time to become more aware of signs and symptoms of bullying.  I reflected on my childhood and I remembered harsh things that were said and/or done to me... and then I thought back to some things that I know I DID that were not kind.  Thank God I have a forgiving Father, now to be sure I find a way to forgive and be forgiven by those I was unkind to in some way or another.

Take some time today to research Bullying.