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!!"

 

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!!!

Relationship Seminar at DuBois church of Christ

My family attends the DuBois church of Christ which is a very small church.  We easily make up 10% of our normal attendance.  I LOVE my church family and the fact that my children are way more educated with bible knowledge than I was at their age.  Ok Ok maybe even more educated than I even am now.  Their sponge like minds just absorb so much more than I am capable of, but my love for reading the bible and desire to be a good person drives me to continue studying as much as I can.

Somedays with a family as large as ours and the chaos that we endure with the twins special needs I find myself putting off the Word by tending to tasks that consume my day, literally. I have easily found myself sliding into a pattern of putting off today what I can do tomorrow and then end up never doing it.  I have started a many bible studies that sit unfinished and unread.  I have a daily devotion book that every year I choose as a New Years resolution, to just make sure that I start my day off reading this five minute devotion... and I find that I am five days behind all the time and have to play catch up.  I often have really good intentions of doing good works to only find myself in another unpredictable family situation that again takes over my time and energy. Its hard to get five kids ready and off to church on time for church services.  Excuses Excuses.

One thing that has always and will always be very important to me is relationships.  I love my family more than I can put into words.  I honestly only have a handful of friends, but the ones that I do have I value more than any worldly possession I could ever buy.  I love the Lord and I want to become closer to Him by gaining an understanding of how he wants a Christian to follow the example given by his son Jesus.

“A man ought to live so that everybody knows he is a Christian… and most of all, his family ought to know.”  ~ D. L. Moody

DuBois church of Christ is hosting a "Relationship Seminar" on Saturday, March 23rd from 9am to 2pm.  I am really excited to listen in on a topic that is so important to me.  I want to invite any and all of my local readers to come on out and join us as we learn how to strengthen relationships.  I am attaching the flier from church for more information.  Hope you'll join me!!!

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Tristin Funny to remember...

Conversation to remember.  Today in checkout line at grocery store:


Tristin: Mom I am kinda jealous of you
Mom: (surprised) what would you be jealous of honey?
Tristin: That I will never have kids as cool as you do.

Took me a minute but then I busted out laughing, whata girl!!

Wacky Wordless Wednesday

And so the guessing continues.. what stinks about non-verbal children

We made our way 2 1/2 hours to Pittsburgh today for an appointment for the twins in the Urology Department.  I left there honestly disappointed.  About four weeks ago I was given some hope that we might have figured out a problem that we are seeing with Isaac and have been seeing for over an year now.  You can read about that HERE...

My twin boys are now 7 1/2 years old.  They both have Down Syndrome.  They both have Autism.  They are both non-verbal.  And they both have so many things in common that when something is different between them, its REALLY different.

Isaac has been signing hurt when taken to the toilet for over a year now, therefore, potty training is not even  happening at this point.   If you read the post above you can get the whole story; so in brief, after many many months I realized that if he was signing hurt, then bye golly he is hurt.  We took him to pediatrician and she suspected meatal stenosis which is a narrowing or closure at the end of the penis that often causes pain for boys to urinate and has to be surgically repaired or opened.  Not that I was glad Isaac may have to have another surgery, but I was glad that we might have figured this whole thing out and could move onto potty training.

Get to urologist today, he looks and says that yes there is a narrowing there but not enough that he would consider surgery.  He said that "if he is eliminating in his diaper and not signing hurt, then he's not worried about it."  SERIOUSLY, I'm back to not knowing what is causing him to sign hurt.

We then go on about medical history and they ask if twins have constipation issues.. I say YES they have chronic constipation issues and they are on Miralax daily at this point... Then just like every doctor says about everything... Well, you have to get the constipation under control and then the pain will go away...

OK, here goes my rant!!!

You see that label from the MiraLAX container.. Use no more than 7 days.  We faithfully use Miralax 5 out of 7 day.  We have been for several months and before that we were using 2 to 3 days a week with no success.  Ontop of the five days a week we still end up doing full cleanses about once a month.. I am so fed up with Miralax blow outs.  I am so fed up with being afraid to send my boys to school and having them make a big mess for the aides to clean up.  Both boys have come home in a change of clothes a fair share of times.  Isaac probably more than Caleb.

We have increased their liquid intake, we have given the Miralax as directed, we have tried to give them fiber as much as we can.. I am out of ideas..

About four or five doctors have now told us "You have to get the constipation under control".  So here's where I need some reader input.

Tell me something new to try.  Is there any "Natural" things to try?  Something I should ask the pediatrician about?  A test that might be helpful to run on them?  Seriously, I know that this is a "Down Syndrome Thing" but how do you get it under control?

And to boot... the doctor said he doesn't know for sure if this is why he's signing hurt, but its as good an idea as he's got with him not being able to tell us anything else.  He did not want to get invasive and do catheters and such (which I appreciate) to test anything else, but What IF?? What IF its something else, What IF he is hurting, What IF we can not get this figured out??? I'm tired of trying to figure this out by myself..  Dang It, I'm tired of worrying about it!!!!

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