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.

Sisterly Love

Let me start by saying this girl has ALWAYS been mother hen to her twin brothers.  When I brought home Caleb at 6 weeks old and he was just over four pounds, my Camille (who was four years old), just scooped him up like a baby doll and never looked back.  She was comfortable and GOOD with handling a tiny baby and she is still just as wonderful with them both today.  She changes diapers, she gets them their sippy cups and food items they request.  She signs and dances with them.  She tickles and teases them.  She is a great big sister.

This year Camille chose to stay home and cyber school her 8th grade year.  She really is having a great year so far and seems to be enjoying all her subjects...ok all except History but what 8th grader likes History?  For her English composition class she is working on a Memoir.  It has been being discussed for a couple of weeks now but just this week its time to put the pencil to paper and begin writing.  I was not at all amazed that Camille chose the title "Growing up with Special Needs".  I am certain that her teacher thinks she may have some kind of special needs from the title.  But I know I can't wait to read what she writes.  I do know that however she writes it there will be wonderful advocacy for her brothers and all others with special needs.  Camille has compassion and understanding well beyond her years and she blesses us all with her love.

The first photo above was when Camille was five years old with Isaac.  The second photo is just this morning before I woke Isaac for school.  Still in his sister arms fast asleep and loved.  How can this not put a smile on your face?  

Having a sibling with Down Syndrome is hard at times.  I cannot speak this from experience as a sibling but as a parent I see my "typical children" finding it difficult to have mom and dads attention less often than they wish to.  I know my three older children feel as though they are missing out on things their friends do because we just can't go there or do that with the twins.  I know my three older kiddos feel like we don't do enough as a family but that is something we just can't fix right now.  Unfortunately, as the twins are getting old things are starting to get easier to do BUT the older kids are getting older and their time with us is becoming limited.  Our oldest daughter, Tristin, is 18 years old now, a senior in high school and looking forward to life after school.  I feel like I waited and waited for the right time to be able to do things with her and now I may never get the right time.  I pray that the time we have had will be seen as precious as she grows older.

Even in difficult times, even with all the many challenges we face having these beautiful twin boys in our lives there is no bitterness or hurt feelings, there is just LOVE.  What an amazing big sister Camille is and I thank the good Lord above for giving us her.  Even in these teenage years and dealing with teenager girl stuff, Camille still allows her heart to been seen by all.

Down Syndrome ~ Different does not mean less than ~

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

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

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

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

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

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

Back At It - Quirky

Today is the second day of Down Syndrome Awareness month.  I shared an old blog post from 2006 listing 21 facts about Down Syndrome on my Facebook page yesterday and realized "I MISS blogging!!"  I was fascinated to read something I wrote six years ago that still rings so very true today yet felt there is so much more that I could add to it.  Blogging has taken a back seat to Facebook with the ease of just sharing a few words and a photo without much thought going into it.  Those posts get lost and are often not even seen by very many. For this reason I am going to start recording our family journey on this blog again.

Today is our school districts annual Homecoming football game.  Today the kids show their team spirit by wearing school colors of Red, White & Black.  I had the perfect shirt for the twins to wear, their Challenger baseball jersey:

Cute and comfy right? One quirk of the boys that drives this mama crazy is refusing to wear certain clothing.  I don't think its necessarily a texture issue, its more of a strong willed boy thing.  I shall look at it as good trait because they can and will communicate very strongly to make their wishes known.  I have donated several cute pieces of clothing because they flat out refused to wear it.  No sweaters, no sweatshirts, no sports clothing.  From experience now I know that I might as well bag it up and give it away at first refusal because it will not change the next time I pull it out of their dresser.  Deep Breath in.... it will be OK!

So I went back to their dresser and pulled out shirts I knew they loved and had to get some cute twin photos for today's blog.

Our daily view of twins!

Black shirt = Isaac,   Red shirt = Caleb

Tell me this photo does not make you smile

Of course the third photo just has to be blurry.  I never, ever, get Isaac smiling and there it is!!

So what's my Down Syndrome Awareness teaching for the day?  My boys are Quirky.  They are very strong willed and sometimes as their mama I need to focus on the positive of every behavior no matter how difficult that may be.  I have learned a long time ago with these boys that its not my wants but theirs that often win over.  Looking back on the issue at hand, its really no big deal that they would not wear a shirt I picked out for them, I'm just happy they go to school everyday with a choice of clothing to wear and for that we are blessed!

So tell me, are you typical kids Quirky?  Do you feel kids with Down Syndrome tend to be more Quirky than others?  Is this an Autism behavior? Did you smile at photo #3?

Homemade Soap Product List

One of my favorite hobbies is making homemade soap.  I have bought homemade soap for years and prefer it very much so to the commercial bar soaps full of preservative chemicals.

I have been making my own laundry soap and cleaners for about four years now.  I added the homemade soap to my list a little more than a year ago, so far its my favorite ME time that I have.

I updated my soap blog with a product list after many requests so I thought I may as well share it on the family blog as well.

Take a peek:

Stacy's Soap Suds

So what are your favorite scents?  Are there any scents you would like me to try?  Still have some holiday scent ideas I will be trying soon.  Like Peppermint Swirl, Minty Vanilla, Mocha Mint, open to try anything.  I LOVE me some fresh wonderful smells!!!

Day three Post Op and feeling good

After months of waiting and praying for the twins surgery that was scheduled for October 31st, we have come out knowing that things we not as bad as anticipated, Praise the Lord!

Rewinding a few months, Caleb went in for a hernia repair and dental work back in June at Children's Hospital in Pittsburgh.  Once he was put to sleep and they were trying to pass breathing tube they noticed they were having a difficult time passing the size tube they generally used.  Both twins have subglottic stenosis, which is a narrow airway.  As they downsized the tubes a few times they called off the surgery and stated Caleb had an unstable airway that would have to be assessed before he could have these elective surgeries.

We arrived at the hospital on Friday with some anxiety as to the outcome.  The team came in and said they were going to do Isaac first.


Isaac:
He was having his airway checked out.  A Laryngoscopy, Bronchoscopy and a endoscopy to monitor GERD... Dental work with extractions and ear exam/repair.

Here was Isaac after his "happy juice" about to go back to surgery.

Isaac was due back in surgery for an hour and a half.  So we kept Caleb busy by going to a playroom and hanging out for a bit.  He loves to sit in these little red cars.  He is running out of room and soon won't even be able to get inside.  I may just have to contact the manufacturer and see if they make an adult version for my Mister Caleb.

Isaac procedure took a little longer than expected due to a bigger issue with his ear drums than they were expecting.  Dr. Mehta repaired a hole in the right ear but was unable to fix the left ear drum which is completely ruptured and needs a 2-3 hour surgery alone.  He said they could not add that to the OR schedule for the day so we will have to come back to have this done.  His airway looked pretty good, just under the normal size for children with Down Syndrome and his reflux looks managed.  As far as dental work he ended up having three teeth extracted from the bottom and the roots dug out from a tooth that broke off recently on the top.  Lots of sealants and a couple of caps on some back teeth.  He's a new boy!!

Caleb:

Caleb's team was very thorough when it came to dealing with airway issues.  They were looking at several different scenarios if they couldn't pass a breathing tube as was the case back in June.  I was very pleased with their detailed explanation of different steps they would take.

Caleb was having more procedures done under this anesthesia due to him being considered more high risk.  He was having his airway checked out.  A Laryngoscopy, Bronchoscopy and a endoscopy to monitor GERD... Dental work with extractions and ear exam/repair (all same as Isaac)... then he was also having a cyst on his neck removed and a hiatal hernia repaired.  It was not quite clear what kind of cyst was on Caleb's neck but that would be determined when they got in there to remove it.  

Calebs procedure was to take around three hours to complete.

Caleb chilling with his "happy juice "

After three hours had passed, the ENT Dr. Mehta came out to update his part of the procedure. He said that his airway was better than expected and it was indeed small but not in a terrible way.  He said it was measured and now documented in their system as to what size breathing tube to use with future operations.  He said that the cyst was not what they were expecting it to be (a thyroglossal duct cyst) and it was a much easier removal.  So from the ENT standpoint it was a good outcome for sure. An hour later the general surgeon came out and said the hernia was repaired and he was good to go, then dental came out next and said he had four teeth extracted and sealants applied.

Four and half hours later Isaac was still being a real trooper playing on his iPad, watching tv and letting time pass by.

We were pleasantly surprised when Caleb woke up in recovery and drank 8 oz of apple juice right away and then signed for more.  Usually Caleb takes hours to come out of anesthesia, not today, he wanted to drink and get outta there.  Children's had a bed space reserved for Caleb for an overnight stay and they even put in a second IV site for his stay while he was sedated.  When he woke up all of the doctors said that the surgery procedures all went better than expected and he was free for discharge if we were comfortable taking him home.  WOW!! Thank you Thank you, and we were off.

Day #3 Isaac is up and ready to tackle school again.  Doctors gave him today off school but he will return tomorrow with no gym class for a month until our follow up.  Caleb is not quite himself and slower to get around.  He is in good spirits and playful, but I can tell he is hurting a little yet. He will stay home with me all week and he too is off gym class and extra physical activity for a month.  I am so happy things went as they did.  I also wanted to thank each and everyone who kept the boys in their prayers and asked about them with genuine concern, we all felt the love.

This photo is them this morning sharing some iPad time together,

they are so adorable when they just chill together.