finale... a word from Mike

Well, the week is coming to an end (the blogging week that is - relax, its only Wednesday!!)  My house is a disaster, laundry awaits being folded, and I am fresh out of ideas to blog about.   I have been begging my husband to do an entry all week - in which he declined because he doesn't like putting his thoughts out there.  I received a text today from my cousin saying she loved my everyday blogging.  I asked her for an idea, and she told me "Mikes point of view" ... So I guess I convinced him that people care about his thoughts - and anything he says is in his own opinion, and people can't judge!

 Mikes point of view 

"Where to start... 1st, the hardest thing was not being given the news, but it was facing everyone after the fact, and telling people.  I couldn't tell people for about a week straight without getting a lump in my throat or a tear in my eye, I played duck and hide and avoided people simply because I just couldn't say it.  I couldn't say 'Lincoln has been diagnosed with Down syndrome'.  I love him for who he is, and knowing that, didn't change anything.  Lincoln is a wonderful child who loves to watch me when I am working around the house and always wants to help out.  Whether it be picking up rocks, or chopping logs, he's a tuff kid and is always willing to lend a helping hand.  I don't research things about Down syndrome.  I take it one day at a time.  To me, it doesn't matter whats in the future.  Just that we enjoy our lives and live every moment to its fullest.  We all laugh with Lincoln, but sometimes I cant help but wonder if we may be hurting his feelings.  Sometimes I wonder if I worry too much.  Maybe I do, but that's how I feel.  I feel that I always have to watch him when he plays as he gets excited and forgets about his balance.  I also feel I have to watch him when he plays with other kids to see how they interact with each other as I am very protective over him, but I try not to get in the way.  I love that no matter where we are, even in a crowded room, as soon as I enter, and we make eye contact, He gives me a big smile and says "daddy" with a sigh of relief.  I'm sorry, but I am a man of few words and like to keep my emotions and thoughts to myself.  Just know that Linc is awesome, and is treated no different than Parker.  I only worry more about Linc and his health, getting sick, and his gross motor skills - even though they are well on their way."

Its been a challenge blogging all week - Its been a busy one! Thank you SO much to everyone who has been reading all week long.  Thank you for your wonderful words of encouragement and open hearts to accept people for who they are.  We've hit close to 800 viewers this week, and to me, that means a great deal!  There isn't much that I do for the community of Down syndrome - mostly because there isn't much around Haliburton, so the fact that a message is getting across to raise awareness-because of me, is so awwww-some and makes me feel like I'm actually getting a word out!! 

I'll end it with a poem I found today that I thought I would share with you :

Creed of Babies With Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

what it's like.....

What its like to have a child with Down syndrome…. You may not get it.  You may wonder why God picked you, or feel upset.

Then you will realize that God has a plan for everyone. He just gave you a miracle -  and you can give something that goes beyond any circumstance, any health issue, and physical need.  You can give LOVE!

What its like to have a child with Down syndrome…. You may feel like you did something wrong.

Then you will realize that this precious miracle was given to you to fill a place in your heart, and you will be so blessed to have this experience.

What its like to have a child with Down syndrome…. you may feel overwhelmed with all the signing up you have to do, for early intervention and other services available, and you may spend hours on the phone and internet researching anything and everything.

Then you realize how blessed you are to have so many helping hands to maximize potential.

What its like to have a child with Down syndrome…. you may worry that your child wont meet certain milestones at the same pace as other children their age.

Then you realize after every milestone is reached, that its such an accomplishment!  You may work really hard reaching them, but when they are reached it so much MORE rewarding!

What its like to have a child with Down syndrome…. you may feel like you're always in the Dr. office or hospital or another appointment.

Then you realize that you're being the best mom you can be for your baby.

What its like to have a child with Down syndrome…. you may always think people are muttering behind you, or pointing or starring.

Then you realize that most people are well meaning, and you cant get upset at someone for not getting it, because it wasn't too long ago that you didn't "get it" either.

What its like to have a child with Down syndrome…. you may feel like things will never be the way they used to be.

Then you realize they won't - they'll be much better!  You'll still enjoy all the same things, but with a smile on your face and a heart full of joy.

What its like to have a child with Down syndrome…. you will see the world in a different way.  Your eyes will be opened to a kind of love that brings light and sunshine to your day, and you will cherish every moment.

What its like to have a child with Down syndrome…. you will open the door to a beautiful secret, but I cant tell you or it wouldn't be a secret.  You might not see it right away, but you will know when you find it :)

no big deal

When I first started to blog, I wondered what people would think.  I wondered if people would actually be interested in reading what I had to write, my thoughts, hopes and dreams.  But as I go through my stats, there has been over 4000 people who have read my blog!  They even go into detail, and there are readers in the Netherlands, Australia and even Russia!  Its crazy to think that people around the world are reading "my story" - so... thank you!!  I started to blog as an easy way to connect friends and family with the progress Lincoln is making.  Even though Lincoln has Down syndrome, his life is a lot like yours.  He reads books, watches TV, loves music and playing with his friends.  Having a child with Down syndrome may come as a surprise, but its a good experience - researchers surveyed more than 3,000 family members and people with the chromosomal disorder across the country for what is believed to be one of the largest looks at life with Down syndrome.  The vast majority of parents said they have a more positive outlook on life because of their child with Down syndrome, and nearly 90 percent of siblings indicated that they feel they are better people because of their brother or sister with a developmental disability.  Nearly all of the survey respondents with Down syndrome said they are happy with their lives, themselves and their appearance!  So what is the big deal?  No child comes without some kind of "special needs" They may not carry the title of special needs, but they have them none the less. Lincolns special needs are taken care of through therapy sessions and extra one on one time with his parents!  Having Lincoln as a baby was a breeze made in heaven.  I can say this now because we are through the "tough" times and struggles from when he was an infant.  As I have blogged about the struggles we had - its a faint memory of Lincoln as a baby, we made it work the way it worked and everyone was happy!  He was an easy going baby, played by himself and had a healthy diet.  So what he had extra special needs in the way of doing things, I would take another baby like Lincoln (not saying it was easy because he has Down syndrome - and not putting Down syndrome on his name) any day!  Parker also has special needs (in my opinion).  His special needs include being on his mothers hip ALL DAY, always needing to know where his mother is and crying if he doesn't get his way - for HOURS.  I'm not writing this with the intention of putting him down, or insulting him, but just trying to state a fact that everyone has their own kind of special need. And though some children might bear titles like "special needs" its clear to anyone that every child is special and has unique needs - because that's the definition of a child.  I'm not one for putting labels on Lincoln, and in fact find it kind of offensive when others do.  I don't like hearing other people start their similar stories off by "I have one of those" or "my sisters cousin is like him" because everyone is different.  I look at Lincoln as Lincoln, not as a label for his chromosomes.  Yes, i agree that he is loving, caring and enjoyable to be around, but just like any other child, he gets angry, frustrated, throws tantrums and complains.  All in all, I guess its just the way you look at things. I enjoy looking at the bright side of things - and some people think the same wondering how I can always be so positive, but that's just the way I am, and it works for me!!  Only the future will tell what it holds for Lincoln, and we will do everything we can to get the best out of him!

early intervention

The first years of life are a critical time in a child's development. All young children go through the most rapid and developmentally significant changes during this time. During these early years, they achieve the basic physical, cognitive, language, social and self-help skills that lay the foundation for future progress. Children with Down syndrome typically face delays in certain areas of development, so early intervention is highly recommended. It can begin anytime after birth, but the sooner it starts, the better. Lincoln started early intervention just weeks after his diagnosis, but he was 10.5 months old when that time came. Early intervention is an organized program of therapy, exercises and activities that work to help with developmental delays that may be experienced by children with Down syndrome. The most common early intervention services for babies with Down syndrome are physical therapy, speech and language therapy, and occupational therapy. Occupational therapy helps the development of fine motor skills like feeding, dressing, grooming. We are currently working with an occupational therapist once monthly as we are working on getting Lincoln ready for school (so scary to think its coming so soon :( )  We started by encouraging Lincoln to start feeding himself, which took a while but we are there now.  We didnt work much with with the occupational therapist until recently.  Now we are working on cutting with scissors, holding a pencil/crayon properly, dressing himself and drinking out of a cup.  The early stages of occupational therapy help in developing the movements in their hands that will allow them to do many things as they get older.  They face more challenges learning fine motor skills because of low muscle tone.  Physical therapy's purpose is to help the development of gross motor skills such as good posture, proper foot alignment and a good foundation for exercise throughout life.  When we first started with our physical therapist, it was alot of work!  We would go thru certain activities to help work certain muscles.  Lincoln was not a fan of his physio therapist - simply because she made him WORK HARD!!  Our at home daily activities  to help Lincoln get closer to crawling and eventually walking would include placing blankets on the floor in bunches and encourage him to roll around in them, placing couch cusions on the floor and encourage climbing, and alot of work with a yoga ball rolling him around on it encouraging him to hold his own weight.  All fun activities that made him work hard!  He started walking just shortly after his 2nd birthday, and full time walking at 2.5!  We have just recently been released from our physical therapist (even though Lincoln is still not riding his tricycle, mostly because he doesnt want to... maybe next year) unless something of concern comes up.  Children usually get released shortly after they start to walk.  Speech and language development can be challenging for many children with Down syndrome. Although most children with Down syndrome learn to speak and will use speech as their primary means of communication, they will understand language and have the desire to communicate well before they are able to speak. They have good social interactive skills and use gestures and facial expressions effectively to help them communicate.  There are a wide range of abilities that children with Down syndrome demonstrate when using speech.  They have difficulty with the strength, timing and coordination of muscle movements for speech.  When Lincoln first started his speech, we would work on blowing bubbles, and using easy words like push and ball.  We are currently working on the letters P,B and M start and finish words, as well as 2 word combinations. We usually have speech sessions (which are called blocks) every 6 months-once a week for 6 weeks.  The last block that we had was in July, and the difference between the first week and the 6th week were quite noticable!  He is starting to talk a little bit more (using actual words - he makes alot of sounds) now that Parker is getting more vocal.  All of this help is certainly something to celebrate!  Its not like its really work at all - its all fun play and positive encouragement to maximize the future that Lincoln holds.

The "R" word

Being a mother of a child with down syndrome, i am fully aware of the politically correct lingo that should be used.  Its a child "with" down syndrome, NOT a down syndrome child. And there are words that are not supposed to be said - with "retard" topping that list.  In October, as I am sure many of you are aware of the tweet Ann Coulter put on twitter. She refused to apologize for calling President Barack Obama "the retard". When Piers Morgan tried his best to pull an apology from her, she  insisted she had nothing to apologize for since her remark was not directed at the community of mentally disabled individuals who were offended by the tweet. "I was not referring to someone with Down syndrome," said Coulter. "I was referring to the president of the United States." "I didn't call the president a Down syndrome child," continued Coulter. "I used the word retard the same way people use idiot or moron." I want to help raise awareness that using the word retard(ed) is disrespectful, dehumanizing, and very hurtful.  What is the definition of the word "retard"?  According to Merriam-Websters it is : to make slow, delayed development or progress of (an action, process, etc.); hinder or impede. Retarded is an actual medical term that has been twisted into an offensive slang term. And  because Lincoln has Trisomy 21 he automatically fits under the medical definition of “retarded”. He is however NONE of those negative things implied when you casually throw that word around. So next time you are tempted to use that word please stop and ask yourself what you are really trying to say. It might even be a good exercise to increase your vocabulary, and that’s always a good thing!  So, if you make a typo or drop a plate, perhaps you could say “oops, I’m quite clumsy today”. If you miss your turn maybe, “Oh dear, I’m so absent minded this afternoon”. If you forget a birthday, “I apologize. I’m really thoughtless and forgetful.” If you’re at a complete loss you can always fall back on “I’m such a cotton-headed ninny muggins”. When you say “I’m a complete retard” you not only risk offending or hurting someone, but frankly you sound unintelligent.  It may seem overly sensitive or maybe just something you’ve never even considered.  I know that most people mean no harm by it. You may feel its not really offensive because you are using it in a self - depreciating or humorous manner, but you're wrong.  Its offensive to say "I'm so retarded" So please, dear casual user of the "R" word, remove it from your every day vocabulary.  Picture this sweet face next time you do something stupid, and pick a different word :)

a look back

The places that medical research has gone is incredible! There's a mountain of information online about what Down Syndrome is and how it comes about, so I thought I'd cover the history. Compared to a generation ago things are certainly better.  The outlook for people with Down Syndrome has changed remarkably.  There are of course people with Down Syndrome in their 40’s and older who have had wonderful and fulfilling lives, but not many for a very simple reason; most of them died. Down Syndrome is associated with a bunch of medical complications including heart defects, a higher chance of infections, thyroid conditions, leukaemia and pneumonia.  Without modern medical treatment, many of these conditions proved to be fatal.    In the 1950s a baby born with Down Syndrome was considered lucky to live into their teens and had a life expectancy of 12 to 15 years. In the 1960s it was only 18 years.  The figure rose sharply in the 1980s as techniques to repair heart defects common in people with Down Syndrome were perfected and increasingly performed. Nearly 40% of people with Down Syndrome have a heart condition and many would die, or be severely disabled if the condition wasn’t treated. In the 1950s many of the conditions simply couldn’t be treated.  The repairs required open heart surgery and techniques which have only been practiced in recent years.  Sadly people with Down Syndrome also faced prejudice and discrimination and were  denied life saving treatment on account of their disabilities.   Today life expectancy is 50 to 60 years on average and most studies conclude that they don’t really know what will limit the life expectancy of those born today who survive infancy and receive appropriate medical care.  Lincoln had heart surgery just after his 1st birthday (about 2 months after his diagnosis), and he doesn't even have a mark!  Its so amazing and uplifting to know that anything is possible!!  He suffered from pulmonary hypertension, so they closed his septal defect (heart condition). To further briefly explain what happens in an septal defect catheter-based procedure, a cardiac catheterization involves slowly moving a catheter (a long, thin, flexible, hollow tube) into the heart. The catheter is initially inserted into a large vein through a small incision made usually in the inner thigh (groin area) and then is advanced to and into the heart. In our case, the cardiologist surgeon used an ultrasound probe passed down the esophagus to allow her to see the heart structures and blood flow as the device was being placed. In addition, a special balloon on a catheter is moved to the area of the hole and inflated across the hole in order to measure the size of the hole when it is gently stretched. A closure device is moved through the catheter to the heart and specifically to the location of the heart wall defect. Once in the correct location, the closure device is allowed to expand its shape to straddle each side of the hole. The device will remain in the heart permanently to stop the abnormal flow of blood between the two atria chambers of the heart. The catheter is then removed and the procedure is complete!! In addition to living longer, adults with Down Syndrome are now living fuller, richer lives than ever before as family members and contributors to their communities. Many even form meaningful relationships and eventually marry!!  As time has gone on, I have been approached by more people who have "noticed" Lincoln's diagnosis, mostly by those who have a story of their own to share!  Its always great to hear others positive stories about their relatives or friends who also live with Down Syndrome.  Its a great way to stay motivated, and to look at Lincolns future as a future! I'm so happy with how far things have come in the past 50-60 years, and even more excited to see what the future researchers will bring!  Obviously not a cure - but many more ways to help people who have Down Syndrome live independent or semi-independent lives!!

“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” – Maria Robinson

National Down Syndrome Awareness week

We are at that time of year again - and I have challenged myself (and a challenge it is...) to write a new post daily during this week to raise awareness!  Not only am I looking at raising awareness - but I also like to look at this week as a time to celebrate!  To celebrate the abilities of children/adults with down syndrome, to celebrate how far medical research has come which has expanded the lifespan of individuals with down syndrome, to celebrate the social and educational supports which are at our finger tips, and to celebrate Lincoln!  This past year has gone by soo quickly - as any parent would say "kids grow up too fast!!!"  We are hitting new milestones like they are going out of style!!  I have been doing a lot of thinking about this week, and things I am going write about without too much repetition. (if anyone has questions or ideas - please let me know!!!), and as I was looking back at this past year, I can't express how much more our lives have become complete!  With Parker being 18 months - hes starting to become alot more fun!  He really enjoys playing with Lincoln and challenging him at the same time! Lincolns speech is still a work - in - progress - and we hear more and more words come out of Parker.  Its important to challenge the kids to use their words, and i now find Parker challenging Lincoln to use his words too which is great!  He will bring him his milk (or whatever), and wait for his "thank-you" ... and if it doesn't come, Parker stands there, signs and says "thank-you" until Lincoln follows suit!  Lincoln is trying really hard to talk.  Being a pretty non verbal child it sounds silly to say that he talks ALOT - but he does!!  If only we could understand what he is saying.  He loves singing songs into a play microphone at the top of his lungs followed by some pretty sweet dance moves!! We bought a toy drum set (which i don't regret because its a heck of a lot quieter than pots and pans!!!), and we have our own little band - Parker with the (whatever he decides to make noise with),  either me or Lincoln working the drums or microphone, and sometimes I even bust out my trumpet and we march around!!  We rock out alot - cause the kids love it!!  For example: Lincoln has a "hand-me-down" friend.  I don't think the kids have ever met, but we get a box of clothes from them quite often!  We show him the clothes and put them into the closet.  For about 2 weeks, he was always in a new article of clothing, and when it came time for getting dressed - he would shout hurray when the new article came out, stand in front of the mirror, and do his little "happy dance." Lincoln has come quite along ways! if we think, he was just starting to walk full time this time of year last year, he was just starting "finger foods" and really didn't appreciate anything "new" or "not routine." Not to say he still doesn't appreciate things that are "new" anymore, - that being said, I'm basically referring to foods.  My picky eater is widening his variety!!  He ate A smartie!  Now he KNOWS he doesn't like them! (shocked ??  SO AM I!!) but at least he chewed it!!  He will also eat strawberries!  That took a while.  Parker gets strawberries after (mostly) every dinner (simply because he eats too fast and wants out of his chair when we are still just starting), and Lincoln has shown quite a bit of interest in a strawberry! (we're talking about the guy who only eats apple sauce, mashed bananas and yogurt for things that are sweet). He took his first strawberry, licked it, and passed it to Parker.  Then he signed "more"... so we gave him more!  He put it in his mouth, chewed very slowly with the most disgusted look on his face... so as a result, Mike and I (and Parker too) starting chanting chew chew chew chew - he swallowed it, made a face, and said hurray! and signed "more" again!  He got another one, put it in his mouth, looked at us - pointed, and demanded our fists pounding on the table while chanting chew chew chew!   He demanded that every time he got a strawberry (even when we were around other people - he would point at them - and tell them to chant as well ha ha).  But now, he'll just eat them! When there's a will - theres a way!!  And if it means chanting and fist pounding at the dinner table - we'll do it!  One step at a time - always moving forward!  I'm sure I could continue going on and on, but I've got a whole week to think of things to write, so I'll keep it short :)
Thanks for reading!!

(These are the boys Halloween costumes.  It took me a while to make them, and I love them (they are Mr. Potato heads).  Unfortunately, Lincoln was way to tired and grumpy to go out (plus it was crap weather, hes sick, and he doesnt even eat candy), so we didnt get a chance to show them off. Just had to post!!)