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!

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?

Down Syndrome Awareness Day 14 - Tooth Crowding

As I sit here somewhat disappointed in myself that I was not able to make a blog every single day of the month of October I realize... I'm a BUSY WOMAN!!!  I think some of you have tried to tell me that before, and actually somedays I can sure feel it.

Yesterday, my oldest daughter Tristin got her tonsils out.  She is the last of our five children to have them removed.  As you can see in the photo below Caleb is showing you  he doesn't have tonsiles anymore.

This is a great photo for two reasons, ok make that three:

1. Caleb's mouth is open so far we can see all the way back

2. Caleb's mouth is open wide enough to show off his "shark teeth"

3. Isaac doesn't smile very often and we caught one here 

My Down Syndrome Awareness fact to share today is that often children/adults with Down Syndrome do not have enough room in their mouth to properly display all of their teeth. People with Down Syndrome often have crowding and end up with poor tooth quality.  Our guys are definatly part of that statistic.  Their baby teeth came in crowded but their adult teeth came in so super crowded there was no room so they are in double rows.  This is going to be taken care of at the end of the month during surgery.  Dental is going to give them a good cleaning, fix any cavities and extract the bottom back teeth.  Originally the dentist said they would not want to take them for fear that their mouth would grow with them and make room to pull them forward when they were older.  The sad result is that Caleb and Isaac will probably never be good candidates for orthodontics as they have to be papoosed down just to get a cleaning.  If our unfamiliar with what that means, they are strapped down and forced to lay still for three minutes while the dentist gets a look.  Any and ALL dental procedures are done under general anesthesia for a reason.  They are biters!!!!

We have a family joke that these teeth are called shark teeth.... My guys are not the only ones, their cousin Eric had teeth like these too as baby teeth.  He had them pulled and adults teeth came in just fine.

Anyone else have Shark Teeth?  How were they taken care of?

Down Syndrome Awareness Day 11 - It's about Isaac

The other day I did a post all about Caleb, its only right that Isaac gets an all about Isaac post now.

 

 

Isaac is truly my baby by 1 minute.  Isaac was Baby B.  Isaac was the reason I had to have an emergency C-section 9 1/2 weeks early.  Isaac, oh Isaac, has kept me on my toes ever since.

 

Isaac was born weighing in at 2 pounds 10 ounces.  Isaac was born with head trauma from being stuck in my ribs.  Isaac was not immediately recognized as having Down Syndrome because of his facial deformities from my ribcage.  He came out with a heart shaped head.

 

Isaac has had a rougher start than Caleb.  He was in the NICU double the time Caleb was, he's had double the surgeries Caleb has had and he tends to be the sicker of the two when illness breaks out.

 

I feel that due to his rougher start he has always been a few steps behind Caleb.  Sitting, Crawling, Walking and most recently finger spelling a bit after Caleb got the concept of it.

 

Isaac is not very social when it comes to playing with peers his age.  Cousins label him as the twin that hurts them, which breaks my heart.  He often pushes, pulls hair or hits kids smaller than him.  There is no rhyme or reason most of the time therefore we always have to keep our eyes on him when with family members and at school.  On the other hand, Isaac is very social towards adults.  At church he has been called the greeter on several occasions because he's been known to make his rounds to every pew just to say HI to each church family member.  He gives hugs, high fives and giggles to all.  In waiting rooms he's been known to approach total strangers and offer them a hug. He particularly likes very large men. Its adorable when he will approach a big ole intimidating biker dude and just give him a hug and run :)

 

Isaac was the first twin diagnosed with Autism.  He was actually diagnosed at 22 months old.  We went to the Down Syndrome Clinic with questions as to why he hummed so much and twirled things and dangled things in front of his face constantly.  At that point we were still trying to figure out the whole Down Syndrome thing and had no clue that we would leave the clinic that day with a new diagnosis of Autism.  I was honestly devastated and so emotional for several weeks not knowing how we would be about to handle and understand yet another disability.

 

 

One way you can tell Isaac from Caleb these days is by his stimming toy.   A TOOTHBRUCH:

 

 

 

He twirls it, he hits the back of his neck with it and he beats it like a drumstick on things to hear the sounds.  As I sit here typing right this minute he comes up and points to the picture of himself and signs "toothbrush".  He loves his toothbrushes.  So much so that we have ALL learned to hide our toothbrushes in weird places.  If you come to our house you might find toothbrushes  ontop of the fireplace mantle, in underwear drawers, on top shelves of bookcases, tucked in a basket under hair supplies and body creams.  Isaac can and will find you toothbrush and claim it as his own.  Grandma and Papa even know to keep their toothbrushes up when we visit.  Its quite comical and definitely something we will always associate with Isaac.  This summer we went to a local flea market and found a sheet of 12 toothbrushes for $2, we bought three of them.....LOL

 

 

 

 

As you can see below Isaac even will use is iPad to request a certain color of toothbrush for the day, he's quite particular about his toothbrushes.

 

 

Isaac is also my escape artist.  He tries and tries but still cannot open the doors at home.  In the event someone leaves a door or a gate latch open Isaac is the first person to realize it and takes off.  Unfortunately we have had strangers return him to us on two occasions.  Thankfully we had an ID bracelet on him with our contact information.

 

He doesn't smile as much as his brother does but man oh man, when he does smile you can't help but smile right along with him. 

Isaac struggles to communicate with us and often acts out with bad behavior.  Isaac has terrible chronic constipation issues that I think makes him feel miserable all the time and makes him act out.  Isaac loves pretzels and Cheerios.  Isaac loves his Papa so much that besides iPad its his only spoken word.  He loves to work and learn, he's really one tough cookie.....and he's my baby boy!!

Down Syndrome Awareness Day #10 - Why God?

I have been trying to go through and clean up photos from the past in hopes of never losing them.  Today I found a disk labeled 2008 Recovery.  This means that they already have been in jeopardy of being lost at one time.  What a better way to keep my favorites than to save them to my blog.  I seriously looked at these photos and felt as though this was my life just last month.  I look at these photos and realize how far we have all come.  I look at these photos and fear that I am not so slowly losing all my babies to a thing we all call life.  On days that I feel like throwing my hands in the air and questioning God as to how he can give me so much to handle, I really, really, need to sit and look through photos like I have done this morning.

There are days where I selfishly do ask "Why has God given ME so much to handle?"  Instead I know that I need to ask how I could have allowed so much time pass by without realizing, accepting and inviting in all the blessings and hardships that God has intended just for ME?  There are hard days, there are hard decisions, there are frustrations like I have never felt before.  Some days with the twins being non-verbal, having Down Syndrome, ADHD and Autism truly just does not feel fair to me.  Seeing other children their age (and younger) playing with one another, communicating, laughing, freely running around with the understanding of safety and not taking off into dangerous situations, and just all around being "normal kids" IS hard for me.  When thoughts like this run through my head I'm often stricken with instant regret for my feelings.  Its so easy to slide into the "oh woe is me" days.   And then..... I sit down for no apparent reason to look through photos and get the reality smack in the head.  We have five beautiful children, some are not so lucky.  We have hard times, but so does everyone else on the plant.  I know that God has chosen Tom and I to parent these five children and to do it with the understanding that He is our guide.  As the kids grow older and their likes and dislikes begin to navigate in different directions we can be assured that God has set this path for us and it is our responsibility to travel it with comfort knowing He is with us. 

My husband Tom has always been my rock when I begin to doubt.  There are times that we are at Children's Hospital about to let our children go into surgery for one thing or another and I am nervous and scared.  Then Tom will stop me with tears welled up in his eyes and say to me, we are so lucky to have these boys, we are so lucky that they are just getting this or that done.  Think of how many parents in this very same building are getting the bad news that their child was just diagnosed with this or that and may or may not be coming home.  That puts our day and situation into perspective.

Having a child with Down Syndrome is not a downer, its not a burden, its not a debt we have to pay for some previous sin, its not some sort of punishment or some freak of nature.  I read silly stuff like this all over the internet, its just nonsense.  Having a child with Down Syndrome is in so many ways just like having children without Down Syndrome.  We have three typical children who get in trouble for not obeying, who get hugs and kisses for doing something wonderful, who we love no matter what decisions they make but often remind them,  just in case, to make the good decisions.  I recently read an analogy on Facebook relating a four leaf clover and children with Down Syndrome.  They are both uniquely rare and to be cherished as such.  Having a child with Down Syndrome gives us that don't have Down Syndrome the opportunity to see how easy we have it, how instinctively we just understand things and how they work, how selfish we are and how much we really need to dig deeper for patience and understanding for that which we do not know.

As I sat down to share these photos I never thought I would type what I did, but I'm glad I did and I hope that sharing this will comfort those who have a newly diagnosed child with Down Syndrome or perhaps open the eyes of someone who looks at children like mine with sympathy or disgust.  People with Down Syndrome are people first with all the same wants and needs as us.  Love and Respect being the first things they need and deserve. 

I appreciate each and everyone of you who already does love and respect my boys for who they are and try to do what you can to communicate that to them.  Take a roll down memory lane with me to the year 2008.

Enjoy!



Down Syndrome Awareness Day #8 - Twins, how to tell them apart

One question I have been asked time and time again is how do we tell the twins apart?  I often say that they look as different from each other as Camille and Elijah do to us.  This often gets nothing more than a giggle and a "Yeah Right!"

We have service providers who have worked with the twins for years and are able to tell them apart as easy as I can.  But if they move on to another case and don't see twins for awhile they go right back to square one.  

I must admit that photographs are harder for me to determine which boy is which sometimes.. Like photo #1 here:

Guess;

Through process of elimination I know that Isaac has a much rougher start with a double length NICU stay and more surgeries than Caleb so in this photo Caleb is on the left and Isaac is on the right. I say that because Isaac was a little smaller and this photo shows a chunky monkey on the left side.

Speaking of surgeries, my family was often caught pulling up boys shirts when they were little to look for the "Cheater Bar".  Isaac had developed NEC at two weeks old and had to have surgery to remove a section of his small intestine.  He then had a colostomy bag for several weeks before a reversal to fix it.  Thus the scar has become known as the cheater bar.  Isaas also had a broviac catheter placed in his neck in the NICU so he does have a few scars on his neck you can see if you really look.

Shape;

Another way to tell them apart is something that I found out after I had identical twins myself.  I had never really known identical twins well enough to put this theory to test, but I can say its true in my boys for sure.  The trick to tell identical twins apart is that one twin will have a rounder face (Isaac) and one twin will have a more oval face (Caleb).  Can you guess the photos above who is who?

Personality;

These boys are so very the same in so many ways and yet so very different in other ways.  Medically, they are very much the same.  One gets a cold the other is a day behind.  One needs a surgery to repair something soon enough the other twin develops the same issue and needs surgery.  Caleb is my comedian as you can see in photo #1 & #2 below... BUT WAIT.. as I was looking through these photos I see Isaac in photo #3, #4 & #5 below and see he is a comedian too.. ok, well...um, I'm stuck.

Actually Caleb is a little more advanced in his sign language and communication skills than Isaac.  Isaac is a little more aggressive towards peers and therefore stays to himself a little more around children.  On the other hand, Isaac loves adults and is known as our hugger.  He loves going around each Sunday at church and handing out handshakes or hugs.  

Rainbow Eyes;

Isaac has the most gorgeous eyes.  When he smiles they turn into Rainbows, see photo #2 below.  I love the joy you can see in his eyes when he is genuinely smiling about something.  I don't get as many photos of Isaac smiling as I do with Caleb so I treasure each and everyone of them.  These photos were taken spring of this year.

If you know my boys personally and can add how you tell them apart, please share.  I love hearing how others figure it out.  Also, thank you for someone asking how do we tell them apart.. If anyone else has a question I can answer I am always looking for blog post ideas.  Comment below!