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

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??!!