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

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...