Twins turn TEN!!

Today was such a great day.  Today is the first time EVER that the boys understood that it was their birthday.  We had the countdown going on the calendar.  We explained to them that we were planning on a party with family and made sure to name all their cousins that were going to come.  We asked them if they wanted balloons, cake and ice cream sandwiches, to which we got a big YES for each.  As we arose this morning the first thing that Isaac showed us on his iPad was that it was "Caleb" "Isaac" "Happy Birthday"!  Caleb started running around the house signing Happy Birthday "C" and "I".  It was party time :)

 The wonderful thing about a close large family is that you really never need to invite friends to parties.  Just family who attended was about 30 people.  And Caleb and Isaac are so lucky to have two sweet girls, Sami & Rebecca, who have worked with them for several years at some summer camps they attend and have been buddies with them for the Challenger League baseball games come to their birthday party this year.

As is the case with many children with Autism, crowds are hard on them.  As is the case with many children with Autism, noise is hard on them.  Each year gets better and I am tickled with the progress these little fellas have made.  30+ people were prepped to sing the Happy Birthday song very softly and quietly.  This is the first year both boys were able to stay at the table the whole song.  Usually Caleb is so overcome with emotions he has to run away crying and ends up very hard to calm down.  Today he hid under the table and covered his ears BUT he stayed at the table!!  Isaac tried to blow out the candles and when he was unable he started swatting his hand at the candle flames so we quickly helped him blow them out.  Caleb was not interested in even trying to blow out candles this year.....again.

Caleb was really into opening presents, Isaac not so much.  Here you see Isaac taking a DVD video out of the bag.  What the camera did not catch was him throwing it across the room and giving me a look of "Leave me Alone"!

Since Isaac was not being a trooper with opening gifts Caleb got to open double!!

After gifts were all opened both boys needed some "alone time" and went their separate ways.
Caleb went to play on his iPad >

Isaac took a nap, ice cream sandwich on his face and all  >

Cleaning up after guests left a big smile crossed my face as it's also apparent that my family is truly getting to know the boys.  There are very few things they like and gift giving has been difficult.  They are not usually ones who like to play with toys.  Caleb carries his Ernie doll everywhere and does play with him daily but we have had years and years of toys gifted to them only to re-gift or give away because of no interest.  Today the gifts included several bags of Doritos (for Caleb) and several bags of pretzels (for Isaac), a couple cases of crackers for both boys and a few sensory toys that they will play with when they are in the mood.  I think we are all coming a long way!! The birthday parties for the twins may not be typical games, noise and celebration but it sure was a good time. 

TODAY IT:

*snowed for the first time this year

*was a wonderful time to gather as family to celebrate these boys

*was bittersweet to have the twins open a birthday card from their "Granny Ann" from church.  She gave us their card Tuesday evening at our Gospel Meeting at church so they could open it on their birthday.  She passed away last night after an accidental fall yesterday morning.

*was nice to see Ron and Martha Dush who were in visiting inlaws from Erie

*is wonderful to reflect on just how far we have come in 10 years and to begin imagining what the next 10 will bring us!

Common statements about special needs, my answers

For Down Syndrome Awareness month I always feel compelled to take that extra minute to provide education and tips on subjects that may or may not ever come up in daily conversation with my friends and family.  My prayer is that I may write something that helps someone looking for the "right words" when it comes to talking to a parent with a child or children with a disability.  I know that the words people use to describe my family dynamics or my identical twin boys, who both happen to have Down Syndrome and Autism, are heartfelt and well meaning. BUT....   I never seem to find the right words when certain statements like those listed below are said to me spontaneously.

1.  God knew what he was doing when he gave those boys to YOU!

So funny to see them BOTH with the same expression, unprompted

I have no doubt in my mind that God new what he was doing.  He saw me as a broken selfish woman who thought she had the whole parenting thing down.  Before the twins I was actively homeschooling my first daughter. I was a mom to three very typical very busy kids, ages 7, 3 & 1.  These three kiddos consumed my days and nights and I often felt so overwhelmed with the day to day tasks of keeping up the house and following the kids different schedules.  I looked at those with sick or misbehaved children with pity and relief that I was not enduring that in my perfect little family.  I confess that!! I remember thanking God on several occasions for my healthy happy children with the belief in my mind that I don't know how in the world I would handle something like that myself. Which leads me to my next comment.

2.  I don't know how you do it all

Honestly, neither do I!!  As we are about to celebrate the twins 10th birthday at the end of this week I truly do not know how we have gotten through all of our days during the past ten years?! Therapies, monthly doctors visits more than two hours away (often occurring more than just once a month), after school programs, and many, many team meetings with behavioral specialist, autism clinics, down syndrome clinics, etc.  I look back and realize we have come so very very far with them yet I am still to this day an impatient person.  There are many days where I have to count to ten, or walk away, regroup and come back with a smile on my face or a calmer voice when trying to get the boys to corporate with one of my demands.  It's more often than not something that has to be done on "their time and not mine".  

VitalStim, a feeding therapy we did weekly for several months to improve swallowing and feeding issues.

I reckon I can relate our journey to a moms journey who has a son excelling in a sport.  She takes him to all of his practices, she provides him with all the extra support needed to improve his skills, she attends all the team meetings and volunteers for all the fundraising activities, she travels to all the games and cheers him on, she beams with pride when her son accomplishes a great play and in the end she has high hopes that something good will come from all effort and attention she has put into her sons athletics.  I am no different.  I do what I have to for my boys to achieve life skills to the best of their abilities.  That's my answer, I do what I have to, what I need to do for my boys to be the best they can be because of an unconditional love that I have for my children.  My story may be different than yours but our hopeful outcome should be the same, we must try our best for our children so that they may become their best.

3.  He doesn't look like he has Down Syndrome to bad.  Is he mild?

When the twins were just tiny babies and toddlers I heard this all the time.  I could tell there were people who were "afraid" to ask if there was something different about my guys.  Then there were a few who said statment #3.  The answer is no you can't have a different level of Down Syndrome, meaning mild or moderate Down syndrome.  If you have it you have it, there is no cure, there is no fix and there doesn't need to be in my own humble opinion.  Down syndrome is a genetic disorder where there is an extra 21st chromosome.  People with Down syndrome have three 21st chromosomes therefore Trisomy 21.  You can certainly do your research and find all the information you need to understand the differences between Trisomy 21 vs. Mosaic Down syndrome vs. Translocation Down syndrome.  There are however, different levels of cognitive abilities just like there are for people without Down syndrome.

4.  Please tell me you take medication to get you through.  How do you cope?

First of all, I have an amazing husband, named Tom, who works very hard and long hours to provide for our family so that I can stay home to tend to our homelife.  He also makes every effort to attend every out of town doctors appointment with me and all IEP's for school.  I genuinely thank God for the man he placed in my life to raise these children with.  I also have grown so much as a Christian since having the twins.  I attended church faithfully prior to having them but not as committed as I have become since having them.  Leaning upon the love and compassion of Christ allows me to try my best to be like him.  Knowing that I cannot ever be perfect nor know what to do in all situations allows me to rely on giving it all to God, and I so often do.  As Christ endured trials and tribulations we must all realize we too are subject to the same.  Knowing that if we follow the gospel of Christ, and truly live with him in our hearts and through our actions to others, we will all be made perfect someday in heaven.  The eternal promise is the reward, and THAT is how I cope.

**I must add that I do not condone those that seek help through medications.  

I am happy that such an aid is available to those in need!**

So do I feel like these boys have made us special parents?  Absolutely!!!  I know in the past 10 years they have showed me how to be more compassionate, more understanding, more loving, more tolerant and less selfish and judgmental.  I am excited to think that there is always room for improvement and growth and I pray to continue to become a better person for them and because of them!  To God be the glory for making us who we are!

Identical Twins with Down syndrome AND Autism Statistics?

Thanks to Facebook I have met a few other families who are doubly blessed like our family is with identical twins both having Down syndrome.

Not only have I met families with identical twins but also families with fraternal twins both having Down syndrome.  To this day there are no updated published statistics of how rare these blessing are.  There is a lot of speculation and a few really good mathematical guesses but no actual numbers.  Of course in a group of parents there are some really great guesses and I loved what one parent said.  She said "We were told the odds were 1 in 80 million 20 years ago, rare yes, the number doesn't matter.  We are the lucky ones!!!"

This is the best documentation I've found thus far from a website from the UK > Click here to view page.  To summarize page read the following:


"We estimate that identical twins with Down syndrome occur at the rate of 1 or 2 in a million pregnancies and non-identical twins at the rate of 14/15 in a million."

With that statistic above now think of the 90% termination rate of those found prenatally to have Down Syndrome detected.  AND then to add Autism & ADHD to the mix makes the Hanzely twins so rare and so special.  Please Lord let me hold my boys tighter and love them harder each day knowing that you have given us a gift that so many will never know or understand.  Some may look at us and feel sorry, some may look at us and be thankful for their healthy kids but I know that my days are filled with an amazing loan from God himself. These two try my nerves more than I wish to confess, these two know all their mom's buttons, these two are so hard to figure out most days but to look back at how far they have come makes me literally have to type through tears streaming down my face.  They can't talk, they can't dress themselves or feed themselves with utensils without help, they still wear diapers and make messes I will not share information about on this post, but we are truly and absolutely blessed.  Without them we would take the world and the ease of living life for granted.  I pray that whoever is reading this would take time to get to know someone with special needs, to get to know their parents and to know that different is not a bad thing.

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!!!

Morning Photo Routine Continues

Nothing like having my twins put a smile on my face each morning with their cute little routine that has just started with this new school year.  After taking tons of photos the first day of school they figure that is how each school day should start.  I just have to budget a few extra minutes each day before bus comes but other than that this is a great part of the day that I hope lasts for awhile.

So I started with the usual:

Isaac using his skills to try to open door
(Thankfully he can't YET)

Caleb posing like the ham he is

Today they both wanted the limelight and were pretty much fighting to get close to the phone camera, actually too close>  I have to admit I like their way of taking photos better.  Anyone know how to take the glare off their glasses so bad?  I know, I know, don't stand right next to a window...LOL  got that:

My Favorite

Once the pushing and shoving to get into mommy's camera had stopped Isaac hit the record button, I love what we got with that:

How can I say I have it rough with these two little chipper boys?  Somedays they are not so chipper and more active that I am, but its these moments that bring the most joy.  Now off to an emergency dentist appointment to fix a tooth that gave me a long painful weekend.  Good Day to ya!!

Unstable Airway Plan of Action

Today we took both boys back to Children's Hospital in Pittsburgh to consult with a new ENT Dr. Mehta who specialized in subglottic stenosis and airway issues.  He was super cool with the boys and I am happy we were referred to his airway clinic. 

We were due for an ENT check up anyhow as we have not been seen since Dr. Ottesen left CHP almost two years ago.  We had more to discuss than just the airways.  Both boys have a perforated ear drum but Isaac had two are both of his are classified as large holes and may need repaired.


We have decided to go forward with another scope to determine the size of their airways so that everything is documented for future surgeries as to what size breathing tubes to use.  They will scope and biopsy their trachea.  Both boys will have their ears evaluated and fixed if need be.  Both boys with have two teeth extracted and dental work done.   Then Caleb will go forward with his hernia repair and the lump that we felt a few weeks back is going to be removed from his neck.  The doctor said we might as well get as much done under one anesthesia as we possibly can so its a lot but they felt they could handle it.

I was totally hoping for a summer surgery to keep from missing to much school but the soonest we could get them both in on the same day with the same surgeons is Friday September 19th. 

We have some answers, we have an action plan and now we move forward. 

After today's appointment we had lots of time on our hands to do nothing as we are staying in Pittsburgh overnight since we have another appointment tomorrow.  The boys favorite thing to do at Children's is to goto the Pop Shop and get some popcorn so that we did..


and then we watched a tv show in the waiting room and Isaac played Angry Birds on the iPads provided for the kids to play on... will share photos later as I am not at home to save on my computer but boys were good sports today and we enjoyed a quiet day of not having to rush around and drive a total of 5 hours back and forth... That gets old and its tiring for sure. 

Tomorrow we head to Autism Clinic for med checks. 

Mr. Caleb is Pleasantly Surprising

This morning was Caleb's ECHO procedure.  I had already had it in my head that he would not cooperate and we would have to do it at Children's on Monday during his hernia repair procedure. After posting on Facebook yesterday requesting prayers I had a fellow mom suggest to desensitize Caleb to the procedure by showing him YouTube videos of what all is done.  (Thank you Keri) I did that.  As the video was playing I was touching him and explaining that it wouldn't hurt and the little girl on the screen isn't crying so it must not be uncomfortable.  We talked about it several times telling him that we were going to so and see a doctor (we call everyone doctors, its just easier) and they would be looking at his heart on a TV.   When we asked him if he wanted to see his heart on a TV he signed "yes", so I was feeling a little confident that he was going to handle this just fine.

We get to hospital and the best distraction for my twins is the TV.  So we watched Price Is Right and we clapped along with the silly contestants and got all silly.  They called Caleb back and we headed right into the room.. It was going smoothly thus far!

There was a big comfy chair upon entering the doorway and he decided that was where he was going to plant his behind and sit.  The technician asked him to remove his shirt and lay on the bed.... That's when things started to get a little tricky.  He started to fuss and twist and turn trying to get away.  We asked her if we could go slowly and explain everything to him and she was wonderful.... she even took the doppler and the goop and put it to her chest first to explain what she was going to do to him.. He was still very hesitant and signing "no, no, no" pretty constantly but then super daddy stepped in and asked if he could hold him on the bed to help him.  The technician said she really did need him to lay down and I got that feeling right then that it wasn't going to work.  Daddy went ahead and sat on the bed and put Caleb on his lap and asked if we could at least start out that way and see what would happen once things started..

SOOOOO..... in daddy's Caleb was fine, he was still, he was interested, he was perfect!!!! He sat on daddy's lap the entire time and she was able to see all the areas of the heart that she needed to.  When Caleb was getting squirmy she would turn the colors on and he would start staring at the screen again is awe of its changing colors.  He actually sat still for about 15 minutes, perfect to get a read on everything that they needed to see for this test.

Who woulda thunk it??!!

I am so proud of the fact that he is tolerating more things and even if he doesn't understand what they are doing he trusts his mommy and daddy enough to know if we say it won't hurt, its not going to hurt... HOORAY for progress...

Now

We 

Wait....... For results

AND Surgery is set up for Monday with a 6:30 am arrival time.  Surgery will take a little better than two hours so continued prayers appreciated.

Wake Up Mom!

6:15am:        I have something dropped on my pillow right beside my head...startled I jump up to see what it is and it's Isaac with his iPad.  Then I hear the iPad say "WAKE UP MOM!".... he really is getting it, I am so elated that we are getting this kind of communication.  Best.Day.Ever!!!

S-l-o-w progress.... but PROGRESS is happening with the iPad

Our family has been blessed beyond words with help getting both boys an iPad for communication purposes. Being a larger family that always seems to have something "pop up" that uses unbudgeted money and yet still trying to find that "extra money" to purchase two iPads was not something that was about to happen easily or quickly. We were thankful that the Lord provided for us in other ways.

Caleb received his iPad from his shopping spree via Make A Wish and Isaac was awarded one through an amazing organization called Shane and Wyatt Down Syndrome Foundation.  This foundation makes it a point to provide iPads to children with Down Syndrome who are having severe communication issues.  Isaac was chosen as their first recipient, how cool is that!?  You can click here to read our blog post about receiving it.

Caleb and Isaac have now had the iPads now for a little better than two years.  I must admit I have been getting discouraged with their progress using it.  I just KNEW it was going to be our answer to better communication with the twins. They are both whizzes navigating the iPhone for apps and games and YouTube videos they want to watch.  They really are impressive!  We have chosen to use the Proloquo2Go app to try to facilitate conversation.   I had high hopes reading reviews of the software that this is the right match for the twins to use.  After downloading it and going through kindergarten with it I began to have doubts that we, the family, and the school were properly trained to teach the boys to use it.  For the past two school years the iPads have just stayed at the school each and every day and during the summer months the iPad was sent home for us to use with them.  Honestly, we didn't know how to use them.  We didn't know how the school had been using them, so how were we to replicate that and keep the boys active with it?  It didn't happen.  I was frustrated, mostly with myself for not knowing how to use them to help my boys.

We started this school year with a few tweeks to the IEP in hopes for the iPad to be our answer again for communicating with the twins.  About 3/4th the school year has passed and I still am not seeing or feeling the iPads are 100% properly being utilized.  Not that the school isn't trying with them, just that I was expecting and hoping for m-o-r-e.  So about two weeks ago I sent a letter to the teacher requesting that the iPads be sent home with them each day after school.  One concern with this is the possibility of breaking it in transit.... that would be bad!  Another concern is that we would use them differently at home than the school uses them there and perhaps confuse the boys.   The only way to find out how to use the iPad was to take the plunge and request it be brought home and use them.

This past week I have seen two different instances that are worth sharing and to get excited about.  Easter weekend was a great time to give them some alone iPad time.  Just to hammer out buttons and let them explore the different folders and talking options.  To be honest they like to push the same button over and over and over and over and over and over....get my point?  Then they laugh hysterically when they push the talk button and the iPad says the same word 25 times in a row.  Its quite comical to watch them.  BUT in doing this they are navigating their way through the program and finding new funny words to repeat over and over and over and over again. This is learning the device in my opinion, so we let them do it.  At school they really refrain from allowing them to push the button more than once as it really is a time waster and a distraction to the rest of the classroom, so this was fun for them.

Saturday afternoon Isaac was browsing around different subject and pushing random buttons all over the place.  Not really making any sense of anything but just having fun saying different words... THEN, he found the dessert button.  He pushed dessert 20 times and out of no where formed a complete sentence.  "I want ice cream sandwich dessert.... and signed Please!!!" Whaaat??  He had the biggest smile on his face and brought the iPad directly to me and said the sentence again.  "I want ice cream sandwich dessert...and signed Please".  You better believe we ran right into town to get that boy an ice cream sandwich and he was very happy that he was clearly understood with what he wanted.

Then last night we gave him his nighttime meds to make him sleepy and  gave him his iPad to pass some time and hopefully learn more of the folders and words within them.  I can already tell he is very smoothly getting around and realizing where to push to talk about family stuff or school stuff or feelings or food.. This is VERY EXCITING to watch.. THEN after about 20 minutes of playing around he found the feelings folder.  He pushed "tired" and "sleep" buttons.  He looked at me and signed sleep, put down the iPad and laid down for bedtime.... What??!!!! This may seem like a tiny progress note but to me its a big big step.

Looking back over the past eight years I can honestly say I have been discouraged with a lot of things. Thinking that this might not happen or that might not happen.  Perhaps feeling like we should give up trying a certain thing with the boys only to find when we are about at the end of our ropes trying desperately to make it work something they "get it".  It took us signing words to them for almost 10 months before we got one sign back from them.  The first word signed back to us was Cracker.. Caleb wanted a cracker.  When that happened we were all so thrilled and emotional.  Now that I am seeing some actual progress with the iPad I am having the very same emotions.  They are GETTING IT.... They are GETTING IT!!!!

By far the hardest thing about parenting children with special needs is for me to be patient and allow Caleb and Isaac to do their thing when "they" are ready, not when "I" am ready or when I know the other kids have done something by time wise.

I'm not giving up on you boys!!! Mama wants to talk with you and get to know even more than I already do.

Throw Back Thursday - taking my blog back!!!!!!!!!!

Today as I searched Google for something Down Syndrome related I came across these beautiful twin boys when I searched images.  These are MY beautiful twin boys!!!  As I stared at this photo I became so sad that I have let my blog go.  The idea of sharing their beautiful faces and personalities with the world to perhaps create a sense of awareness and acceptance has been swept under the proverbial carpet.  Life has gotten in the way.

I am NOT the same person or even mom as I was 8 months ago when I last blogged.  So much has changed and yet so much has stayed the same.  Its time I start cracking my knuckles and diving back into my blog.

See ya soon!!!

Autism AND Down Syndrome.... Times TWO

Today, April 2nd, is World Autism Day.  Today is a day to spread awareness about Autism.  Today I think everyone has at least heard of Autism if not already has a family member dealing with Autism.  Today I want to share our story...

Our identical twin boys were born in October of 2007, both with Down Syndrome.  Our world as we knew it changed from that day on.  Tom and I have five children.  The first three children were born with perfect pregnancies and near perfect deliveries.  I had only one experience with a premature baby prior to the twins.  As I held my 4 pound nephew Nathan in the NICU on March 14, 2005 I remember thinking how tiny he was and I was so thankful he was ok coming as early as he did.  I NEVER thought I would hold a 2 pound 10 oz baby or a 3 pound 2 ounce baby a short two and a half years later and call them my sons.  The NICU experience was one of many many experiences we have dealt with since October of 2007.

The diagnosis of Down Syndrome consumed what time and energy I had left after caring for my children.  I become a sponge wanting to absorb more and more about this disability and the "expected" future for my boys.  I joined online groups, I read books, I read blogs, I reached out to the Down Syndrome Clinic at Children's Hospital in Pittsburgh, I sought after local support groups and/or families raising children with Down Syndrome.  I felt like this Down Syndrome thing was taking over my life, my thoughts, and my emotions.

Then came a day of complete and utter shock.  

I was really trying to figure this Down Syndrome thing out.. things were different with them compared to their older siblings.  Early Intervention, Therapies, lots and lots of doctors and hospital visits, evaluations, people in my house, I felt like I was the one under the microscope sometimes... The boys were 22 months old, they were doing some army crawling on the floor to get around,  they were still wobbly sitting up, they were not feeding themselves at all from the table, and they did alot of humming and stimming.  Humming and Stimming were new words I was getting to know but having a hard time understanding.  It was July 2009 and we had a routine visit at the Down Syndrome Clinic.  We spent some time with my favorite (and very missed) doctor, Dr. Bill Coehn.  We did the normal assessment of the boys and things were going the same as the previous appointment, when all the sudden Dr. Coehn asked me to take a survey of behaviors for Issac.  I filled them out and he proceeded down the hallway to the Developmental Clinic.  Upon his return he confirmed what he was thinking and gave Isaac a diagnosis of PDD Autism.  My world that I thought was consumed with Down Syndrome now had to compete with a diagnosis of Autism?!

I remember that the grief I felt after the PDD Autism diagnosis was much much harder than when I had received the Down Syndrome diagnosis.  I couldn't help but fret the double whammy that was presented to me.  My boys have Down Syndrome and now your telling me one of them has Autism too??  What will this mean for his future that I still haven't even envisioned with just having Down Syndrome??  What school is going to be able to handle a dual diagnosis such as this?? What about the other twin if they are identical??  What more can I handle?  Here was my solution:  I KNOW!... I will let the Autism specialists figure the Autism part out, I can't possibly understand two things.  I will continue to concentrate on the Down Syndrome part and ignore the Autism diagnosis, afterall, how different are the two?

Autism services began for Isaac about September of 2009 and I remained in denial.  By December we were back at the DS Clinic to have Caleb evaluated as per service providers who came into our house for Isaac observing the same things going on with Caleb and recommended we have him checked out.  Sure enough by January 2010 both boys were diagnosed with PDD Autism and I really had to accept the fact that Autism was now just as big a part of our lives as Down Syndrome was.

Three years later I can say that Autism is harder to deal with and accept than Down Syndrome.  Sometimes I selfishly try to find blame for things my boys do and I blame Autism before I do Down Syndrome.  They are non-verbal, they are not toilet trained, they hum daily to the point of  frustration to siblings and people around them, they have silly stimming objects such as a sock or a toothbrush, they rewind their favorite part of a tv show 150 times (or more) until they have plum just drove me crazy, they are aggressive towards self and others on a turn of the dime, oh I could go on and on and on.

What has Autism done positively for us?  Autism is surely a stubborn gene.  The Autistic mind tends to make people to do what they want to do when they want to do them.  If there is something that my boys WANT to learn or do, they learn or do it to the fullest.  Example, Caleb loves to dance so we got him Just Dance on the Wii.. Caleb can do the dances he likes the most with his back facing the tv and do all the moves right on cue.  Isaac loves to stim on toothbrushes by dangling and swinging them (unfortunately, not by brushing his teeth!).  He finds any and every way to steal his siblings toothbrushes.  His determination is amusing and I need to seriously just buy a case of toothbrushes.  Both boys are very visual learners.  Because of this we have taught them to read by sight words, they have proven how amazing they really are by their love of learning.  

I held them out of kindergarten for a year to allow them to grow a little and continue working very hard on their speech and social skills.  I was determined to have them speaking a few words before they started school, that did not happen.  They started kindergarten this year in the Autism Support Classroom.  There are 8 students in their classroom.  I could not be more proud of how well they have adapted and how well they are doing.  They communicate via sign language and Proloque2Go on the iPad.

I can sit and brew and wonder what the future holds for the twins or I can put my faith in God that he has big plans for them. I have chosen the second route.  I know that the Lord has blessed us with these boys for a reason.  Understanding and seeing life through the eyes of my children, I may never get to do.   But just knowing that God gave them to Tom and I allows me to think less of self and more of others, to accept that which is not accepted, to love those that are unloved.  I most certainly could not do this without the cherished prayers that I know people offer to us and without my families, friends and church support.

Hug those kiddos tight,  Autism or no Autism.

I'll end with a quote from Mr. Rodgers: 

"I like you just the way your are!!"

 

OMG I just had the best laugh!!!!!!!!!!!!

OMG I just had the best laugh!!!!!!!!!!!!

I don't know about you but when I receive a text from Isaac's TSS staff from school that started like this it caught my curiosity..

Then the text ended with:

Did you notice the scarf Isaac wore to school today??? It was a bra!!!!!!!!!!!!!!

OH  YEAH.... my face was beat red and I have been hysterically laughing all day long about it

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!!!!!

Your Child by Jennifer Shaw... Beautiful!!!!

I don't often share YouTube videos on my blog that are not my own, but this song really touched me today and I thought it was a beautiful video.  One that needs spread and shared.  One that parents raising children with special needs can relate to and one that will teach those who don't have children with special needs.

Beautiful!!!  Thank you Jennifer Shaw...

Sharing My2k story with The White House

The fiscal cliff is the buzz word these days.  You hear it on the news, you read it in the paper, see it all over  social media, you hear friends and family talking about it.  I received an email today from whitehouse.gov asking for family stories to contribute to the Presidents desk.

Here is a statement from the page:

"You and your family have a lot riding on the outcome of this debate. We all do. And as citizens, we all have a say in the country we want to build… So make your voice heard."

— President Obama, December 01, 2012

One thing that I have found since having my twins is my voice.  Before them I let so many things slide.  Before them I would never question a medical professionals opinion.  Before them I would never speak up and say that I disagreed with pending decision to do something. Before them I really just watched everything happen and either complained about it under my breath and to family or I just swallowed it and sat back and pouted.

Some may say well I'm not going to speak up or do anything because I'm only one person, what does my story matter?  One thing that I have found is that if two or three people ban together and work feverishly to make a change not much happens.  The two or three people burn out before the change is ever made... BUT if 300 people make a statement on how an issue will affect their family its peaks some interest.... AND if 3000 people make a statement they are heard.  Being a single voice is as a whisper, but joining in and shouting your voice with many others becomes and insisting outcry for attention to a matter.

I have attached my story for reference and to give you a sample of a story:

Raising five beautiful children is a blessing that my husband Tom and I have been given.  My husband is a partner at a CPA firm and makes enough money that I can stay at home with our children and work a part time job from home.  Financially we are not struggling, we are not wealthy by any means but we manage and are happy.  A $2000 tax would be devastating to my family.  We will still manage to get by, but we have one really big factor that we are not willing to give up and to continue where we are with this issue we will have to majorly cut in areas of food, clothing, utilities and shelter to keep it going.  My two youngest children are 7 year old identical twin boys who both have Autism and Down Syndrome.  They have changed the definition of our family dynamics to unconditionally loving and giving no matter what.  They require a lot of therapies, specialist, medication, and supplies.  They are both doing amazing and far surpassing what I expected to see out of them when they were born.  This is due to the early intervention and the medical care and therapy they have received to this point.  If our family were to be taxed another $2000 from our poverty level income already, it would be life changing for my beautiful boys.  Their progress would slow, their independence would be compromised, their outlook for their future would be grim.  We need to stay on the path that we are on right now, its working!!  And from a family such as ours that works hard and contributes to our community as much as we can through volunteering we need to keep what we have to continue on.  Please consider families like ours who have financial obligations above and beyond what other families have.  Its not about material items or luxuries, its about human life and striving to gain abilities to be able to give back to your community.  Our hopes for our twins are high, we believe in them, we are obligated to do all we can for them.  Please don't make it any harder on us than it already is!!

Thank You for reading and considering my story.

Stacy Hanzely

And so there it is.  My voice.... now won't you add yours to mine??  CLICK HERE without delay and add your story.  No need for a long story. A few simple sentences will do.  Join my outcry!!!  Remember that "We The People" are part of the government.  May God be with our leaders and guide their decisions to be what is truly best for our country.

SLEEP, or lack thereof !!??

My 7 year old  son Isaac has me so puzzled.  I have asked the doctors, I have asked the Behavioral Specialist, I have ask the psychologist, I have ask other parents....

My son does not sleep long enough!!  I give him upto 7mg of Melatonin every night.  We usually empty a capsule onto his ice cream or into his nightly sippy cup around 9pm.  Usually asleep by 10 pm.  BUT he's up and about right now at 4 am as he is every morning.  Right now I am listening to the familiar sound of him humming over a very loud TV that usually wakes everyone else in the house up.

Giving him a slow release dose of Melatonin is not really an option because it comes in a capsule form that has to be swallowed.  He cannot do that.

I should add that Isaac does have Autism and Down Syndrome.  I do know that not sleeping is an Autism trait, but WHAT CAN I DO?  He is in kindergarten and I always feel so bad sending him to school when I know he has to be ready for a nap.

Has anyone dealt with this and is there any hope??!!

Seeking Second iPad... Because of Positive Results

Sometimes it doesn't make to get a second item of something simply because you have twins.  When they were tiny I would buy two teddy bears, two of the same books or games, two of the same toys.  Now that the boys are seven I am finally learning that sharing is a life skill that we all need to learn.  So I no longer buy the second item when it comes to things they may "want".

Now shoes, coats, and clothing... I guess I have a hard time breaking that.  I love to dress them the same.  I do not do it every single day, probably like four out of seven days, but its something that "mom" still likes to do while they are young.  Its still really fun confusing people because so many still have a very difficult time telling them apart.

So onto the topic of this post.  Caleb had a wish from Make A Wish back in August of this year, right before school started. I just realized I NEVER blogged about that yet YIKES!!    Part of his wish was to receive an iPad with Proloque2Go software to perhaps help him communicate.  Both twins are non-verbal, have Autism and Down Syndrome.  Our primary means of communication right now is sign language.  It works for us, but not so much for family, friends, and community members.   I was skeptical about using an iPad for communication.  I didn't know if they would actually be able to understand the concept and form appropriate answers or questions.  Today I learned different!!!!!!

Today their speech therapist from school called me.  She is so wonderful and also just happens to be the "Autism Expert" at our local school district.  She wanted to express how amazed she was at how well the boys are doing with the iPad.  They are requesting things from their calendar at school, they are interacting with stories, and they are asking to play specific games on the classroom iPad... Her concern is that we only have one iPad and two boys so she cannot get them to use this to their full potential.  Ideally she would like for us to have TWO iPads so that they could communication to each other.  WOW!!! I could not even envision seeing this happen right now.  They laugh together and play together but I really have never seen them sign to one another or communicate with each other.  I guess other than one throwing a toy at brothers  head and the other retaliating by scratching big tiger marks down the middle of the perpetrators back.  To me that means: "I don't like that!!"

So, its Christmas time.  We have five children.  Husband works very hard and long hours to provide.  I work very part time from home, but also do all the mommy tasks that consume my days.  Life is expensive.  How can we find a way to get a second iPad without asking for charity or waiting to be chosen from the hundreds of iPad giveaways I've entered over the past year or grants I've applied for?  Has anyone ever done a fundraiser for their child to get an iPad?  If we were to try to save up the extra money it would be nearly the end of the school year before we could probably get one.  We could skimp here and skimp there... yes, but how can we find one either used at a good price now or raise the funds ourselves....

Speech therapist recommended looking on Ebay for used ones.  New technology is out there, iPad mini's are out and people will be getting rid of their "old stuff".  I browsed Ebay for 30 minutes or more tonight and found nothing less than $300 plus shipping, which to me is not a great deal for a used item. I don't want to spend hours browsing for something I may never find....

SOOOOOO I come to you, my blog readers.  Shout out some suggestions.  

Again, I am NOT looking for a hand out.. I am not looking for charity... I am looking for a way to provide my second son with a communication device quickly.  I am hoping that the feedback I receive will also help someone down the road that may be in the same situation as we are.

Bragging Moment:

Caleb's school work papers

Needed help writing his name but glued number is correct order INDEPENDENTLY!!!