Thursday, March 20, 2014

Being a parent... to kids with Down Syndrome

Tomorrow, March 21st, is World Down Syndrome Day.  The reason behind this particular date is that individuals with Down Syndrome have 3 - 21'st chromosomes.  Thus 3/21 has be designated World Down Syndrome day in their honor and to spread awareness of this disability.  Over the past eight years I have learned a whole lot about Down Syndrome (DS), not only by living with it in my identical twin boys both with DS but from online research, meeting other families and reading several books on the topic.  I would consider myself very knowledgeable but certainly still in the learning stages.

I remember when my husband and I were informed that baby B, Caleb, was confirmed to have Down Syndrome.  I was more afraid of not knowing what to do with him than I was about having a child with something wrong with him.  Long story short, twins came 9 weeks prematurely, one at 3# 3 oz and other at 2# 10oz.  We had no idea that they had DS.  Baby A (Isaac) was reason for emergency c-section as he was literally born with head trauma from being stuck in my ribs.  Due to this head trauma they were not able to identify DS in him but saw features right away in Caleb and took some blood to confirm.  I was told that having twins both with DS was very unlikely and certainly very uncommon so they would wait until Isaac (2#10oz) was bigger to draw blood to test for DS.  Two weeks later Isaac developed NEC and was taken to Children's Hospital in Pittsburgh to have surgery on his small intestine, at which time they removed enough blood to confirm that he did indeed also have DS.  In our opinion, as mom and dad, we were grateful that both boys had it versus one with and one without.



Down Syndrome is most certainly scary to brand new parents. Down Syndrome is most certainly scary to experienced parents who have children growing up into adults.  Down Syndrome is most certainly scary to think to far ahead in the future about.  Down Syndrome shapes and molds a families lifestyle differently than those without a family member with Down Syndrome.  Down Syndrome is filled with uncertainties, no doubt.




BUT.... I am going to removed the words Down Syndrome from the above statements and fill it in with the word Parenting:

Parenting is most certainly scary to brand new parents.  Parenting is most certainly scary to experienced parents who have children growing up into adults.  Parenting is most certainly scary when you think to far ahead into the future.  Parenting shapes and molds families lifestyles differently than those who have no children. Parenting is filled with  uncertainties, no doubt.




Looking back on the past eight years am I going to say that raising children with Down Syndrome is as easy as raising children without... NO WAY (I have three typical children)!!! Would I say that raising children with Down Syndrome feels fair all the time... NO WAY.  Honestly, I selfishly get sad and down sometimes when I see other families who can just pick up and go to the drive in movie theater or have fun together at an amusement park, or even just go for a walk in the woods together.  Things like going to a ball game or swimming pool are just easy fun things to do.  But my circumstances are different than those raising children with just Down Syndrome.  My twins are non-verbal and also have Autism.  Autism is a whole different story that I won't go into on this post.




What can I say that I have learned the most about raising children with Down Syndrome?  I have learned that I was (and still am in many ways) very selfish.  I did what I wanted when I wanted with my other children and I cannot do that with my twins.  I have learned that unconditional love trumps selfishness.  I have learned that people with Down Syndrome just want the same thing that you and I want.... someone to LOVE them and NOT GIVE UP on them.  I have learned that the saying "Children with Special Needs does not take a special family to raise them, it MAKES a special family" is so very true in more ways than I can mention.  I have learned that people with Down Syndrome are beautiful people who just want others to take a minute to see them for who they are and accept that they are a little different but amazing in their own way. I have learned that I will never stop learning what I means to put others needs in front of your own.  The Lord works in mysterious and wonderful ways when it comes to something one might consider a trial in life, only to come to realize that it is in fact a blessing!!

My three older children have learned a valuable lesson that I can honestly say I did not know as a youngster. My boys have opened all of our eyes to sympathy, empathy and compassion.  These boys have changed my world and might I say for the better.  I pray that what I've explained here today does not make it seem as though raising my children is a burden but in reality a true blessing.   Some days are easy, some days are hard... but WAIT, isn't that the same thing I could say about my three older children without Down Syndrome?  You betcha.



When people say to me "I don't know how do you do what you do?", I can simply just say in love and truth, because they are my beautiful children and you would certainly do the same if they were yours.  Down Syndrome is not something that scares me, people who don't take the time to understand and enjoy people with Down Syndrome does.  Through all its ups and downs, parenting a child with Down Syndrome is a gift and I find it a privilege to be Caleb and Isaac's mom.

Happy World Down Syndrome Day 2014!


Thursday, February 27, 2014

Throw Back Thursday - taking my blog back!!!!!!!!!!



Today as I searched Google for something Down Syndrome related I came across these beautiful twin boys when I searched images.  These are MY beautiful twin boys!!!  As I stared at this photo I became so sad that I have let my blog go.  The idea of sharing their beautiful faces and personalities with the world to perhaps create a sense of awareness and acceptance has been swept under the proverbial carpet.  Life has gotten in the way.

I am NOT the same person or even mom as I was 8 months ago when I last blogged.  So much has changed and yet so much has stayed the same.  Its time I start cracking my knuckles and diving back into my blog.

See ya soon!!!

Monday, August 5, 2013

Its' been a Simple Blackberry Jam Kinda Day

I have been gone from blogging for quite some time now.  My days have been so busy, heck my life has been so busy.  About a month ago I really felt that God has put something so strongly on my heart that I could not deny it any longer.  He led me to a decision that I had been putting of for a few years but could not bring myself to do.  I resigned from a job that I truly loved working as the Executive Director of our local Arc chapter.  I enjoyed getting to know so many people and gaining a better understanding of the needs in our community for people with disabilities.

What I came to realize was that I had a very important need in my own household.  Raising five children and trying to keep it all together is not something that one can do lightly, I WAS NEEDED!!  I was needed to stay home and be the best mom and wife that I could possibly be.  And thus I begin the stay at home mom routine again.  The income loss will hurt but I have faith that God has a better plan for us and He will see us through.  Already I have had more time to tend to my garden and keep the weeds from overtaking everything like it usually does by this time of year.  Already I am working hard with the kiddos to simplify things in our home.  I have said several times, I don't know if I'm losing my mind or if I'm getting smarter, but we currently have NO FURNITURE in our living room... thats right!! We have a rickety ole glider rocker that I bought when I got pregnant with Tristin (16 years ago) and an Amish wooden rocker that is not the most comfortable to sit in for a long period of time.  So a rocker for mama and a rocker for dada.  The kids can sit on the floor....and they do!!  The kids had spilled things on the furniture, jumped on it until fabric was torn, the twins had pee'd on it a few times and the odor would not fade, the dog used it more than I did and I just plum got tired of having something like that in my house... so I paid someone to come and haul it away to burn.  Honestly, felt great!!!

We are downsizing the bazillion pieces of clothing that my children have, and don't take care of.  I will wash laundry only to have them throw it on their floor and declare it dirty again and end up back in the wash before its even worn... no more!  What does not end up in the dresser goes away in some fashion or another.

Yesterday my darling husband informed me that the blackberries were ripe and huge.  He spent about an hour or so pickin for me last night.




 I didn't want to see that beautiful harvest end up as just a snack so today I took some time and made some blackberry jam.  I have made strawberry jam, I have made blueberry jam, I have made peach jam, I have even made tomato jam, but never have I had a chance to make blackberry jam... I have to boast and let you know it turned out delicious!!! Can't wait to spread it out on pancakes or eat it ontop of ice cream and enjoy it for breakfast ontop of my toast.. YUM!!



So as I start my new journey of being a stay at home mom again, I see wonderful things in my future.  I see canning, I see baking, I see crafting, I see home improvements, I see landscaping.... BOY oh BOY I guess I really was needed right here ;)

Recipe for blackberry jam:

9 cups of fresh blackberries
5 cups of sugar
1 1/2 cups of apple juice
1 box pectin

mash blackberries, add apple juice and bring to a boil adding sugar slowly.  When boiling add package of pectin and boil until thickened.  HELPFUL HINT: I always take a spoonful out and set it on some ice cubes for a minute to see if its the thickness I desire when finished.  Ladle into jelly jars, top with sterilized lid and hot pack for 10 minutes.  This recipe makes about 9 jelly jars full, with a little extra to enjoy ASAP!!

Wednesday, July 24, 2013

Elijah hits double digits


10 Years!! 10 Years Old!!!  

My first born boy, Elijah, has hit double digits   His beautiful brown eyes still melt my heart every single day and his personality keeps me on my toes from day to day.  Some days he's a comedian, some days he's an inventor, some days he tries to see who he can irritate the most, some days he's a big ole snuggle bug.  Elijah has really grown this year and he sure loves to play baseball.  His birthday present is, of course, a ball game with dad and papa on Friday.  They are going to State College Spikes because 1. its a ball game and 2. Mountain Man from Duck Dynasty will be there and that's equally exciting for the guys ;)

Love Ya Buddy!!!  Enjoy #10 and looking forward to seeing what the next 10 years bring!!

Tuesday, April 2, 2013

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!!"


 

Monday, March 25, 2013

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 

THANK YOU in advance for considering to support us!!!

Wednesday, March 6, 2013

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!!!

==>> Click image to see larger